I've been out of the world for a little while thanks to my surgery, so I was saddened to find out only today that Tanya Angus, an acromegaly sufferer, passed away on the 14th January. She was aged just 34, and died from heart failure and transient ischaemic attack (a "mini-stroke").
Tanya Angus had one of the most severe cases of acromegaly (a.k.a. gigantism) ever seen; it was not until her pituitary adenoma (tumour) grew to the size of a grapefruit that she was finally diagnosed. By this time, the tumour wrapped around her pituitary gland proved extremely resistant to surgical and radiotherapy treatment. Her condition caused her to grow from 5'8" at the age of 21 to 7ft tall by the time of her death, and to go from 130 to 400lbs. Just last August it seemed that injections to inhibit her growth hormone production had been successful, but by October sadly her levels of growth hormone were rising once again.
She was a well-known figure in the acromegaly community for her efforts to raise awareness of the condition, and to encourage education about and early detection of gigantism among the medical profession. Anyone reading her website, or the comments sections of the various news websites which reported her death, can't fail to notice how many of her fellow acromegaly sufferers viewed her as an inspiration.
Showing posts with label pituitary adenoma. Show all posts
Showing posts with label pituitary adenoma. Show all posts
Wednesday, 6 February 2013
Tuesday, 29 January 2013
Back on the ward
Once I woke up after my endoscopic transsphenoidal pituitary adenoma resection surgery (that's what they called it on the forms!) I had half an hour or so in the post-surgical recovery area to rehydrate and have regular neurological checks. I had these throughout my time in hospital, with decreasing regularity. They ask you where you are, what year it is etc (it usually takes me until at least February to readjust to a new year so I had to concentrate for that one), then there are physical tests; squeezing hands, pulling and pushing with your hands and feet etc. to check that nothing weird's going on in your head.
The last time I had pituitary surgery, I was pretty perky afterwards, probably because I had a whole bunch of morphine when I woke up. This time however, my head barely hurt when I woke up, so no morphine, so I was rather more subdued... Which I think everyone else was probably thankful for. I was taken onto the ward and my parents arrived not long after. A nurse brought me a yoghurt to eat and then a tuna sandwich - I only managed about a quarter of it, but it was really nice to have some food, and when the tea trolley came around I was practically in heaven.
At first I had to have observations taken every half an hour for the first six hours, then once an hour for six hours, then every two hours, and so on. Observations involved measuring blood pressure, blood oxygen levels, heart rate, breathing rate, pupil response to having bright light shone in them (usual response: argh, get that light out of my face), and the aforementioned neurological tests.
I was really not in much pain at all, I had some paracetemol and that was all I needed with regards to painkillers - I was up and walking to the loo within two hours of waking up, so I did pretty well I think. They start you on hydrocortisone, a steroid medication, immediately after surgery (via IV drip initially) because there's always a risk that your body will stop producing steroid hormone after the operation, which may be temporary or permanent.
The most exciting thing to happen was a ninja nosebleed, which suddenly appeared from out of the blue. A nurse ran up to the neurosurgical theatres to grab a selection of bandages wrapped up in bandages, to tie around my face like an attractive surgical moustache and catch any unexpected oozing.
The last time I had pituitary surgery, I was pretty perky afterwards, probably because I had a whole bunch of morphine when I woke up. This time however, my head barely hurt when I woke up, so no morphine, so I was rather more subdued... Which I think everyone else was probably thankful for. I was taken onto the ward and my parents arrived not long after. A nurse brought me a yoghurt to eat and then a tuna sandwich - I only managed about a quarter of it, but it was really nice to have some food, and when the tea trolley came around I was practically in heaven.
At first I had to have observations taken every half an hour for the first six hours, then once an hour for six hours, then every two hours, and so on. Observations involved measuring blood pressure, blood oxygen levels, heart rate, breathing rate, pupil response to having bright light shone in them (usual response: argh, get that light out of my face), and the aforementioned neurological tests.
I was really not in much pain at all, I had some paracetemol and that was all I needed with regards to painkillers - I was up and walking to the loo within two hours of waking up, so I did pretty well I think. They start you on hydrocortisone, a steroid medication, immediately after surgery (via IV drip initially) because there's always a risk that your body will stop producing steroid hormone after the operation, which may be temporary or permanent.
The most exciting thing to happen was a ninja nosebleed, which suddenly appeared from out of the blue. A nurse ran up to the neurosurgical theatres to grab a selection of bandages wrapped up in bandages, to tie around my face like an attractive surgical moustache and catch any unexpected oozing.
Saturday, 22 December 2012
Pituitary Awareness Quiz: The Results
I was so impressed by how many of you took part in my little quiz - apologies for the long delay in coming out and praising you for it! Some people dipped in and out for the odd question, while others were with us for the long haul.
Bearing in mind that double points were awarded for witty answers rather than merely correct ones, I present... The Results!
The winner is... Clare! With the close runner-up Davey D. Congratulations guys, you may officially brag wildly about your knowledge of the pituitary gland and its inhabitants.
And as I did promise a praise poem for the winner:
There was a young lady named Clare
As wise (and fierce) as an owlbear.
She was a quiz queen
- quite the answer machine -
she made other contestants despair!
Bearing in mind that double points were awarded for witty answers rather than merely correct ones, I present... The Results!
THE RESULTS
The winner is... Clare! With the close runner-up Davey D. Congratulations guys, you may officially brag wildly about your knowledge of the pituitary gland and its inhabitants.
And as I did promise a praise poem for the winner:
There was a young lady named Clare
As wise (and fierce) as an owlbear.
She was a quiz queen
- quite the answer machine -
she made other contestants despair!
Monday, 29 October 2012
Pituitary Awareness Quiz: Day 10
Another day missed! Apologies. I do have an exciting update but I'm not sure I'm up to typing it all this evening. Consequently, I present today's super simple question:
Q.10: What hormone does my pituitary tumour overproduce?
a) Thyroid stimulating hormone
b) Thyrotropin releasing hormone
c) Thyroid hormone
Pituitary Awareness Quiz
Day 10, Question 10
Q.10: What hormone does my pituitary tumour overproduce?
a) Thyroid stimulating hormone
b) Thyrotropin releasing hormone
c) Thyroid hormone
Friday, 19 October 2012
Pituitary Awareness Quiz: Day 2
Welcome to today's question about the pituitary gland! Yesterday's question was relatively easy to Google, so I thought I'd throw in a slightly more tricky one for you (and my boyfriend did the calculations!).
Q.2: Approximately how many (normal-sized) human pituitary glands could you fit in an Olympic-sized swimming pool?
a) 4 billion
b) 20 billion
c) 50 billion
d) 100 million
e) 100 billion
Anyone who provides workings to back up their answer will receive great respect. Good luck!
National Awareness Month Pituitary Awareness Quiz
Day 2 - Question 2
Q.2: Approximately how many (normal-sized) human pituitary glands could you fit in an Olympic-sized swimming pool?
a) 4 billion
b) 20 billion
c) 50 billion
d) 100 million
e) 100 billion
Anyone who provides workings to back up their answer will receive great respect. Good luck!
Thursday, 18 October 2012
Nationary Pituitary Awareness Month Pituitary Awareness Quiz
Even the most ardent readers of my blog will probably have forgotten that October is National Pituitary Awareness Month. Oh yes, ladies and gentlemen - that happy time is here again! Try to contain your excitement, please.
Last year, I looked at some of the other National Months that are held in October; this year, I felt like doing something different. But pituitary glands are tricky things to raise awareness for, especially considering that approximately eighty percent of Britons can't even spell the word "pituitary", let alone point to its location in the body.*
And then it hit me.
Fortunately, I wasn't seriously injured.
Dear readers, it's been over a year since I started this blog. Some of you have been here from the start, some of you have joined me along the way, and some of you typed "piglets in a teacup" into Google and arewondering how the hell you ended up here.** Believe me, I'm wondering too. But I feel quite strongly that all of you should have increased, improved and frankly incredible knowledge of the pituitary gland as a result of reading this blog, and now you will finally have the chance to prove it. And so, I present: The National Pituitary Awareness Month Pituitary Awareness Quiz! It's not sanctioned by any healthcare professionals, and it's not recognised as a professional medical qualification anywhere, ever - but the winner will gain both bragging points, a delightful poem about how wise they are, and my eternal respect.
Here's how it's going to work: For the remainder of the month, I will post one (probably multiple-choice) question about the pituitary gland every day.*** To be in with a chance of winning, simply post your answer in the comments section. Correct answers gain you one point. At the end of the month, I will leave a day or so for anyone who wants to join in to answer all the questions, then I'll tot up the points and announce the winner and write a short praise poem about how awesome they are.
Here's the twist: correct answers gain one point. Answers (however wildly incorrect) which include something that amuses me - a pun, rhyming couplet, accompanying picture or just shameless flattery - will get two points. Because life's not fair, and neither is my pituitary gland.
If I get more than five comments before the end of the month, I will count this quiz as a wild success, so please join in!
Q.1: Acromegaly is a rare disease caused by a growth-hormone-secreting pituitary tumour, which can lead to gigantism and excessive growth of the body's tissues. But what language is the word "acromegaly" derived from, and what does it literally mean?
Is it:
a) from the Latin acro "extremity; member of the body" and magnus "large"
b) from the Greek arka "repository; hidden place" and megaras "growth".
c) from the Greek akros "highest; extremity" and megalos "large".
It's an easy-to-Google one to start you off. Fly, my pretties, fly!
_____________________________________
* Warning: spurious fact alert.
** This is actually a genuine search that somehow resulted in my blog
coming up. I have no idea why
***In theory.
Last year, I looked at some of the other National Months that are held in October; this year, I felt like doing something different. But pituitary glands are tricky things to raise awareness for, especially considering that approximately eighty percent of Britons can't even spell the word "pituitary", let alone point to its location in the body.*
And then it hit me.
Fortunately, I wasn't seriously injured.
Dear readers, it's been over a year since I started this blog. Some of you have been here from the start, some of you have joined me along the way, and some of you typed "piglets in a teacup" into Google and arewondering how the hell you ended up here.** Believe me, I'm wondering too. But I feel quite strongly that all of you should have increased, improved and frankly incredible knowledge of the pituitary gland as a result of reading this blog, and now you will finally have the chance to prove it. And so, I present: The National Pituitary Awareness Month Pituitary Awareness Quiz! It's not sanctioned by any healthcare professionals, and it's not recognised as a professional medical qualification anywhere, ever - but the winner will gain both bragging points, a delightful poem about how wise they are, and my eternal respect.
Here's how it's going to work: For the remainder of the month, I will post one (probably multiple-choice) question about the pituitary gland every day.*** To be in with a chance of winning, simply post your answer in the comments section. Correct answers gain you one point. At the end of the month, I will leave a day or so for anyone who wants to join in to answer all the questions, then I'll tot up the points and announce the winner and write a short praise poem about how awesome they are.
Here's the twist: correct answers gain one point. Answers (however wildly incorrect) which include something that amuses me - a pun, rhyming couplet, accompanying picture or just shameless flattery - will get two points. Because life's not fair, and neither is my pituitary gland.
If I get more than five comments before the end of the month, I will count this quiz as a wild success, so please join in!
National Pituitary Awareness Month Pituitary Awareness Quiz
Day 1 - Question 1
Q.1: Acromegaly is a rare disease caused by a growth-hormone-secreting pituitary tumour, which can lead to gigantism and excessive growth of the body's tissues. But what language is the word "acromegaly" derived from, and what does it literally mean?
Is it:
a) from the Latin acro "extremity; member of the body" and magnus "large"
b) from the Greek arka "repository; hidden place" and megaras "growth".
c) from the Greek akros "highest; extremity" and megalos "large".
It's an easy-to-Google one to start you off. Fly, my pretties, fly!
_____________________________________
* Warning: spurious fact alert.
** This is actually a genuine search that somehow resulted in my blog
coming up. I have no idea why
***In theory.
Thursday, 20 September 2012
The (Im)Patient Patient
I've always had a problem with the phrase "caught like a rat in a trap". I feel it could be improved upon. Rats are smart. Rats, once caught, sometimes make it out of traps.
But they never make it out of cats.
I currently feel much like a rat in a cat. It has now been six weeks since I had an injection of lanreotide. They only last for a month. During that month I did feel much better. At one point I ran upstairs and my heartrate barely increased, even though I hadn't taken my medication that day. For me, that is a medial coup indeed.
Alas, those halcyon days are gone. I'm back to taking two or three propranolol tablets a day to keep my heartrate as normal as possible. My moments of hypoglycaemia (brought on by the lanreotide injections) have been replaced by finding the six flights of stairs to my desk much more challenging in the morning.*
As you can imagine, I am chafing under this new and irritating regime, rendered all the more irritating by the fact that if my stupid former GP's surgery didn't have such nonsensical rules then I would have had my second injection by now and all would be hunky dory. Consequently, I'm calling the hospital every week to find out what's going on. I contact one of the nurses in the endocrine department, who is lovely, and then we have a mutual guilt festival, whereby she feels guilty for not being able to give me good news and I feel guilty for making her feel guilty considering that it's not her fault in the slightest.
I called last Wednesday, at the five-weeks-since-last-injection mark, and the nurse said that she could confirm all the paperwork had finally been submitted, and she seemed optimistic that it would get approved quickly and I'd get the injection soon. I called again today but the atmosphere of optimism had sadly been replaced with uncertainty over exactly how long this would take. Apparently, if your life is not immediately threatened by the lack of medication, then it doesn’t matter that you're symptomatic and the tumour in your head could well be growing happily like an evil, greedy mushroom.** You just have to be patient.
If ever I had wondered how the word "patient" had come to have two such different meanings - meaning in the first instance, a calm endurance of difficulty, and in the second, a person receiving medical treatment - I stopped wondering some time ago, because it seems that extreme feats of patience are required pretty much as soon as you become a patient.
_________________________________________________
*I should point out that my desk is in an office which is accessed by climbing six flights of stairs and then walking along a corridor. I don't just have a desk sitting atop a massive staircase, although that would be quite awesome.
** I don't like mushrooms.
But they never make it out of cats.
I currently feel much like a rat in a cat. It has now been six weeks since I had an injection of lanreotide. They only last for a month. During that month I did feel much better. At one point I ran upstairs and my heartrate barely increased, even though I hadn't taken my medication that day. For me, that is a medial coup indeed.
Alas, those halcyon days are gone. I'm back to taking two or three propranolol tablets a day to keep my heartrate as normal as possible. My moments of hypoglycaemia (brought on by the lanreotide injections) have been replaced by finding the six flights of stairs to my desk much more challenging in the morning.*
As you can imagine, I am chafing under this new and irritating regime, rendered all the more irritating by the fact that if my stupid former GP's surgery didn't have such nonsensical rules then I would have had my second injection by now and all would be hunky dory. Consequently, I'm calling the hospital every week to find out what's going on. I contact one of the nurses in the endocrine department, who is lovely, and then we have a mutual guilt festival, whereby she feels guilty for not being able to give me good news and I feel guilty for making her feel guilty considering that it's not her fault in the slightest.
I called last Wednesday, at the five-weeks-since-last-injection mark, and the nurse said that she could confirm all the paperwork had finally been submitted, and she seemed optimistic that it would get approved quickly and I'd get the injection soon. I called again today but the atmosphere of optimism had sadly been replaced with uncertainty over exactly how long this would take. Apparently, if your life is not immediately threatened by the lack of medication, then it doesn’t matter that you're symptomatic and the tumour in your head could well be growing happily like an evil, greedy mushroom.** You just have to be patient.
If ever I had wondered how the word "patient" had come to have two such different meanings - meaning in the first instance, a calm endurance of difficulty, and in the second, a person receiving medical treatment - I stopped wondering some time ago, because it seems that extreme feats of patience are required pretty much as soon as you become a patient.
_________________________________________________
*I should point out that my desk is in an office which is accessed by climbing six flights of stairs and then walking along a corridor. I don't just have a desk sitting atop a massive staircase, although that would be quite awesome.
** I don't like mushrooms.
Labels:
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Wednesday, 11 July 2012
The Very Scary Case of Kane Gorny
Before going into hospital last Tuesday, I stopped off at one of my favourite cafes for a hot chocolate, as a pre-hospital treat. I wasn't allowed caffeine in the three days before going in, so I had been suffering from a woeful lack of hot drinks. I got my hot chocolate (which was delicious) and sat down by the pile of daily papers they keep at the café. Alas, all the more upmarket titles had been taken, so I had to settle for that peculiar bastion of journalistic achievement: the Daily Mail.
You can imagine my feeling of ill-omen when, immediately before going into hospital overnight for further investigations into my pituitary tumour, I saw that the Mail's headline story was about Kane Gorny, a 22-year-old with a pituitary tumour who died of dehydration in hospital after nurses denied him his medication.
You can read the Mail's story online here. According to the Mail, it seems that after his entirely routine hip replacement surgery, nurses did not give Mr Gorny medication necessary for fluid retention; he became so agitated from dehydration that he called 999 in an attempt to get some water, but was sedated and left unattended overnight, despite his mother raising concerns. Even after his death, the attitude of some members of the nursing staff appears to have been appalling.
I thought I would tackle a couple of questions raised by the reporting on this terrible story, before moving on to look at it as a whole:
You can imagine my feeling of ill-omen when, immediately before going into hospital overnight for further investigations into my pituitary tumour, I saw that the Mail's headline story was about Kane Gorny, a 22-year-old with a pituitary tumour who died of dehydration in hospital after nurses denied him his medication.
You can read the Mail's story online here. According to the Mail, it seems that after his entirely routine hip replacement surgery, nurses did not give Mr Gorny medication necessary for fluid retention; he became so agitated from dehydration that he called 999 in an attempt to get some water, but was sedated and left unattended overnight, despite his mother raising concerns. Even after his death, the attitude of some members of the nursing staff appears to have been appalling.
I thought I would tackle a couple of questions raised by the reporting on this terrible story, before moving on to look at it as a whole:
What was wrong with him?
Kane Gorny suffered from a pituitary tumour; that much is certain. The exact details of Mr Gorny's condition are still somewhat sketchy and vary depending on which paper you read, but I'm going to guess that he possibly had acromegaly or Cushing's Disease, from the statement of his endocrinologist that he had a "rare tumour", and the fact that he had joint problems.
Most papers have reported that he had a "malignant" brain tumour or "brain cancer". The tumour may well have been cancerous, but it should perhaps be noted that this extremely rare for pituitary tumours; they are sometimes misreported as malignant due to journalists misunderstanding the condition and the fact that a tumour labelled "benign" may still be very harmful. In any case, I'll be looking at the definition of malignancy/cancer with regard to pituitary tumours in a future post, hopefully within the next couple of weeks, because it's an interesting question.
Why did he need a hip replacement aged just 22?
After pituitary surgery, sometimes the healthy pituitary gland is damaged, leaving it unable to produce certain hormones, including ACTH (adrenocorticotrophic hormone), which stimulates the adrenal glands to produce the steroid hormone cortisol. Without cortisol in the body, you can die quite quickly - consequently, it is standard to give patients steroid pills after surgery until doctors are certain their pituitary gland is able to produce ACTH. If the pituitary gland has been damaged, patients will need to take these pills for life.
Most reports have stated that Mr Gorny's steroid treatment left him requiring a hip replacement; high levels of steroids in the body can lead to avascular necrosis (although not in "a couple of weeks" as one paper initially reported). Additionally, if he did indeed have Cushing's or acromegaly, both of these conditions can adversely affect joints.
How did he die of dehydration so quickly?
A healthy human can live for a couple of days without water, depending on exertion and environmental conditions. Kane Gorny could not. After his pituitary surgery, Mr Gorny was left with diabetes insipidus. This is a very different condition from what we refer to as "diabetes" (diabetes mellitus) and is caused by a deficiency in anti-diuretic hormone (ADH, or vasopressin). Anti-diuretic hormone is secreted by the pituitary gland and helps to control the body's fluid balance. In diabetes insipidus, the lack of this hormone means that the body cannot conserve much of the water which it takes in, and consequently the sufferer becomes extremely thirsty and needs to urinate frequently. Unfortunately, developing this condition is a fairly common side-effect of pituitary surgery and pituitary radiotherapy.
In order to treat his diabetes insipidus, Kane Gorny would have needed to take a drug called Desmopressin (DDAVP), which is a synthetic substitute for vasopressin. As long as he was taking this drug, his body would be able to retain a normal amount of the water he drank, and he would not become dehydrated. When the drug was witheld, his body could not remain hydrated, and he died.
How could the hospital get this so wrong?
Unfortunately this is the question that can't be answered. Kane Gorny's death appears to have been preceeded by a number of absolutely catastrophic blunders at the hospital. His endocrinologists were not informed that he was in the hospital for surgery; his surgeon was entirely unaware of his condition; nurses did not read his notes; no-one listened to his mother's concerns; the list goes on.
Diabetes insipidus is a common problem among pituitary patients, but far more rare in the general population. Endocrine and neurosurgery nurses would likely be familiar with the condition, the importance of the medication Mr Gorny was taking, and the crucial need to monitor his fluid balance. The nurses actually looking after him knew almost nothing about it.
It's a sad fact that there are a hell of a lot of medical conditions in the world. Patients with diabetes insipidus or the inability to produce steroid hormones are encouraged to wear MedicAlert jewellery to alert paramedics and medical staff to their conditions in case of emergency, yet it seems even when medical staff have access to full notes on a patient they can go unheeded.
Sometimes it gets frustrating when you're in hospital or go to the doctors and are asked for the thousandth time to explain what's wrong with you. In the future I'll try to be more grateful that someone is checking...
_____________________________________________________________________
Kane Gorny's brother is fundraising for CLIC Sargent. You can donate here.
Tuesday, 10 July 2012
Human Guinea Pig: Part 4 - Pituitary MRI Scan
This is the fourth part of the story about my overnight stay in the hospital's research department, having lots of tests to look at the effect my pituitary tumour is having on my body and metabolism. You can read the first part here, the second part here and the third part here.
Pituitary MRI Scan
After my Actiheart was fitted, they had to take it right off again as I went straight down to have my pituitary MRI, another scan where no metal is allowed. I was strangely comforted by the fact that the MRI receptionist was fairly rude to Dr Olive when she asked to speak to the technicians - not because I dislike Dr Olive, who is lovely, but just because it's nice to know it's not only patients that bear the brunt of receptionists' bad days. I have a theory that in every hospital the receptionist recruitment protocol calls for exactly 50% completely lovely, can't-do-enough-to-help-you staff, and 50% short-tempered and angry people. That or they slip some kind of Jekyll-and-Hyde potion into their coffees.
"Have you come from Norway today?" the technician asked me.
I think she was quite disappointed that I had not, though I've no idea why.
I was still dressed in the giant scrubs and they keep scanning rooms pretty cool, as the equipment needs low temperatures. Fortunately the technician was both lovely and observant, and she gave me a blanket to keep me warm in the scanner. The usual ritual of ear plugs and glasses removal was observed, and packing was duly stuffed into the strange helmet thing you have to put your head in. Then I was drawn backwards into the machine.
| I didn't get a photo, so here's a cheesy stock image of some people smiling through an MRI scanner |
Then came the contrast injection, at which point I was given my panic button - usually they give you one at the start of the scan, but I was so happy under my blanket I hadn't even noticed I didn't have it - in case you have a reaction to the contrast dye (unlikely unless you have undiagnosed kidney failure, but still). Then another set of scans - each set took about ten minutes, I would guess - and then freedom! Easy as pre-packaged pie.
The strangest part of the scan actually happened after it was all over. There was another patient with the same condition as me who was having the tests at the same time - this meant we could both have our PET scans on the same day, as the hospital prefers doing two of the same type at once to save money. We'll call him Bob. I hadn't met him at that point, but he was having his pituitary MRI immediately after me, and so I stayed in the waiting room with a very sweet Filipino nurse waiting for his scan to be finished so we could all go back to the research department together.
I was, as I have mentioned before, still wearing scrubs. I was however wearing a pair of exclusive "I'M A PATIENT" bracelets detailing my name, age, hospital no. etc. and my allergies (trimethoprim = brings me out in an attractive full-body rash). The waiting room was pretty full, so I was sitting off to one side, flipping through an elderly magazine,* when a woman came up to me and asked me how much longer the current scan would take.
Well initially, I admit, I gave her a "woman, you crazy!" look, until I suddenly realised that in my current garb I probably looked like a member of staff.
"Sorry, I'm not a doctor, I'm a patient," I said.
"So how long will it take?" she asked.
I got out my "woman, you crazy!" face again. "Er, I don't know…"
"Well, I think it's really bad that we're not being given any information," she told me. "How long do you think it will take?"
"It probably depends on the type of scan?" I suggested.
And with that, she stamped off, muttering angrily to herself.
On the way back to the research department, I got to meet Bob! He is the first ever person I have met who also has a TSHoma, which is not surprising as there's only about 20 of us across the whole of the UK, Ireland and, apparently, Norway (this may explain the MRI technician's cryptic question). Bob was a bit of a legend and had sensibly rejected the scrubs they had suggested he wear, in favour of pyjamas with Animal from the Muppets on; obviously the preferable sartorial choice.
You might think that, on finally meeting someone else with the same incredibly rare pituitary tumour, we would discuss symptoms, or treatment. But no! People with TSH secreting pituitary adenomas are nothing if not polite, and of course we would not want the lovely Filipino nurse feeling left out of the conversation. So, as she most likely had no brain tumours of any sort, we instead discussed the best way to travel to Cardiff by public transport.
And a very educational conversation it was too.
My pituitary MRI scan experience:
Hassle: 2/5
Fun: 2/5 (extra point for meeting Bob!)
Weirdness: 3/5
Results: 2/5
Total Score: 9/20
I fear I've just had too many MRIs to find them exciting any more!
________________________________________________
*The magazine was old... it wasn't a magazine for old people.
Labels:
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Friday, 6 July 2012
Human Guinea Pig: Part 1 - The Research Facility
I turned up at the hospital at 2pm on Tuesday and met up with the endocrinologist who's been in charge of arranging the series of tests which I was due to undergo (she needs a top secret blogging name; we'll call her Dr Olive). We went to the research department where the tests would be carried out, and I was delighted to be introduced to my private room - complete with en-suite bathroom and free TV (and sharps bin, and cardiac arrest instructions).
I think I've mentioned this before, but just in case - the tests which I had done over the past few days were done partly as general research into my condition and partly as a guide on what kind of treatment I should be given next. Firstly, a nurse was called in to do my initial tests; height (5'7"), weight (57.9 kgs), blood pressure (105 over 77), blood oxygen (97%) and resting heartrate (116 beats per minute - normal rate is 70-100 bpm). She had obviously not been informed about my tachycardia, because when she saw how fast my heart was going she looked at me askance and said "Did you come here running?" I assured her I had not, and that 116 bpm was perfectly normal for me. Later when Dr Olive looked at the results I think she was quite surprised; I had explained to her that I had tachycardia but she was surprised that my resting heartrate could be so high; of course, at that point when she took my pulse it was a perfectly standard 79 bpm.
I also had my breathing rate observed which was deeply disconcerting, as it essentially involves a nurse staring at your boobs for a solid minute while you attempt to "breathe normally". It is strangely difficult to breathe normally when you know someone is counting every inhalation.
Next came my ECG (electrocardiogram, a.k.a. EKG), where they put a bunch of incredibly sticky pads on your wrists, ankles, and across your chest around the heart. Then they attach a bunch of wires to the pads, which feed into a machine, which then prints out a trace of your heartbeat. It doesn't take very long but it is a bit of a hassle - the worst part is peeling the sticky pads off afterwards, although as the very nice nurse - let's call her Carla - pointed out afterwards, it's definitely a lot worse for blokes with hairy chests!
After that, I had to give my consent to the various tests that they wanted to do, and answer a few questions about my medication, my pituitary adenoma and any other medical conditions. It wasn't particularly exciting, although when Carla asked me if I ever suffered from any kind of recurrent pain, I said no. It was only after she'd asked me two further questions about pain that I finally remembered the fact that I have hypermobility syndrome and consequently have fairly regular bouts of joint pain, and have done since I was a child. I apologised for apparently being a massive idiot and she laughed and said people often forget these things when it becomes normal for them.
Some people with hypermobility/Ehlers Dahnlos Syndrome are incredibly flexible - later, Dr Olive came to ask me another set of questions, and when I mentioned the hypermobility again I think she was faintly disappointed at my lack of hilariously bendy joints. My little fingers do bend backwards alarmingly, but the joints that are most affected are in my legs and feet so they're not very impressive - and at the moment I can't even get vaguely close to touching my toes thanks to damaging a muscle in my left leg dancing.
Once I had been thoroughly questioned, I was left alone to contemplate my crimes - or at least, someone else's crimes, thanks to Arthur Conan Doyle, Sherlock Holmes and my Kobo e-reader, a birthday present from my parents and an excellent device for anyone planning to spend time in hospital.
You can read the next post about my time in the hospital, and my DEXA body density scan, by clicking here.
| My charming room |
I also had my breathing rate observed which was deeply disconcerting, as it essentially involves a nurse staring at your boobs for a solid minute while you attempt to "breathe normally". It is strangely difficult to breathe normally when you know someone is counting every inhalation.
Next came my ECG (electrocardiogram, a.k.a. EKG), where they put a bunch of incredibly sticky pads on your wrists, ankles, and across your chest around the heart. Then they attach a bunch of wires to the pads, which feed into a machine, which then prints out a trace of your heartbeat. It doesn't take very long but it is a bit of a hassle - the worst part is peeling the sticky pads off afterwards, although as the very nice nurse - let's call her Carla - pointed out afterwards, it's definitely a lot worse for blokes with hairy chests!
After that, I had to give my consent to the various tests that they wanted to do, and answer a few questions about my medication, my pituitary adenoma and any other medical conditions. It wasn't particularly exciting, although when Carla asked me if I ever suffered from any kind of recurrent pain, I said no. It was only after she'd asked me two further questions about pain that I finally remembered the fact that I have hypermobility syndrome and consequently have fairly regular bouts of joint pain, and have done since I was a child. I apologised for apparently being a massive idiot and she laughed and said people often forget these things when it becomes normal for them.
Some people with hypermobility/Ehlers Dahnlos Syndrome are incredibly flexible - later, Dr Olive came to ask me another set of questions, and when I mentioned the hypermobility again I think she was faintly disappointed at my lack of hilariously bendy joints. My little fingers do bend backwards alarmingly, but the joints that are most affected are in my legs and feet so they're not very impressive - and at the moment I can't even get vaguely close to touching my toes thanks to damaging a muscle in my left leg dancing.
Once I had been thoroughly questioned, I was left alone to contemplate my crimes - or at least, someone else's crimes, thanks to Arthur Conan Doyle, Sherlock Holmes and my Kobo e-reader, a birthday present from my parents and an excellent device for anyone planning to spend time in hospital.
| Not quite an ocean view... |
You can read the next post about my time in the hospital, and my DEXA body density scan, by clicking here.
Thursday, 5 July 2012
Medical Test Top Trumps
In relation to last night's post: Panic over! Turns out the darn thing is completely waterproof after all and I should have just left it on. Another example of my excellent sievebrain: good at draining pasta, not so good at retaining pertinent information about medical devices.
I am back from l'hôpital and I did indeed have an interesting time of it. While I did not appreciate waking up to an array of 23 blood tests yesterday morning, I can't deny that they hospital have been pretty darn thorough in their endeavours to understand what my pituitary tumour is doing to my metabolism! They also thoughtfully froze some spare blood - in case they later think of other blood tests they wish they'd done at the time. The tests were partly for research purposes into TSHoma and other rare thyroid conditions, and partly to decide how they want to move forward with my own treatment.
Here is a list of the tests and scans they did:
MRI Scan
CT Scan
PET Scan
DEXA Scans:
- body composition
- bone density (spine and hip/femur)
ECG heart trace
Step test
Actiheart 5-day heart rate and activity monitor
12 hour urine collection
Glucose tolerance test
GEM resting metabolic rate testing
TFT bloods
Blood pressure, blood oxygen, etc.
Symptoms/Quality of life questionnaire
Don't know what half of those acronyms stand for? Never fear, neither did I. All will become clear shortly. I had so many tests that there's no way on earth I could describe them all in one post, unless it was the longest and most terrifying blog post in the world, so I figure I'll go through what happened chronologically. In order to introduce an element of competition to the proceedings, I have decided to rate each medical test against a set of four criteria: Hassle (how much hassle the test was to undergo), Fun (how fun the test was. I may have to introduce minus scores), Weirdness (self explanatory) and Results (does the test produce a pretty picture/interesting information once completed).
Each type of test will be scored on a range of 0-5, and by the time I have finished it should be possible to play Emer's Medical Test Top Trumps. Just what you've always wanted!
_____________________________________________
p.s. - forgot to mention, I took my camera with me as promised so I actually finally have a few photos to show you!
ANYWAY.
I am back from l'hôpital and I did indeed have an interesting time of it. While I did not appreciate waking up to an array of 23 blood tests yesterday morning, I can't deny that they hospital have been pretty darn thorough in their endeavours to understand what my pituitary tumour is doing to my metabolism! They also thoughtfully froze some spare blood - in case they later think of other blood tests they wish they'd done at the time. The tests were partly for research purposes into TSHoma and other rare thyroid conditions, and partly to decide how they want to move forward with my own treatment.
Here is a list of the tests and scans they did:
MRI Scan
CT Scan
PET Scan
DEXA Scans:
- body composition
- bone density (spine and hip/femur)
ECG heart trace
Step test
Actiheart 5-day heart rate and activity monitor
12 hour urine collection
Glucose tolerance test
GEM resting metabolic rate testing
TFT bloods
Blood pressure, blood oxygen, etc.
Symptoms/Quality of life questionnaire
Don't know what half of those acronyms stand for? Never fear, neither did I. All will become clear shortly. I had so many tests that there's no way on earth I could describe them all in one post, unless it was the longest and most terrifying blog post in the world, so I figure I'll go through what happened chronologically. In order to introduce an element of competition to the proceedings, I have decided to rate each medical test against a set of four criteria: Hassle (how much hassle the test was to undergo), Fun (how fun the test was. I may have to introduce minus scores), Weirdness (self explanatory) and Results (does the test produce a pretty picture/interesting information once completed).
Each type of test will be scored on a range of 0-5, and by the time I have finished it should be possible to play Emer's Medical Test Top Trumps. Just what you've always wanted!
_____________________________________________
p.s. - forgot to mention, I took my camera with me as promised so I actually finally have a few photos to show you!
Thursday, 28 June 2012
My Transsphenoidal Pituitary Surgery: Part 1
And so, the day of my pituitary surgery dawned!
Or rather, it didn't. It was still dark when I got up that morning; I had to report to the hospital at 7am and I needed to get up early enough to allow time for paranoid checking and re-checking of my bag. Thank god for the internet - I packed in a rush the night before, but all I had to do was Google "what to pack for hospital" and I was supplied with numerous checklists that helped ensure I did not forget my toothbrush.
I reported in, accompanied by my mum and dad, and was duly supplied with my attractive compression stockings and various leaflets. I was assigned a waiting bed in the neuro day ward, and another lady who was having the same surgery was there as well. One of the nurses ran through the pre-operative assessment form again and I was swabbed for MRSA - apparently if you come up positive they don't cancel your operation but you do get moved to the end of the queue for that day, in case you end up contaminating the patients after you.
It was at this point that I started meeting anaesthetists. A woman walked into the room and introduced herself as my anaesthetist, asked me some questions, and let me ask her any questions I had. Shortly after she left, a man walked into the room, introduced himself as my anaesthetist, seemed surprised when I said I had already met someone claiming to be my anaesthetist, asked if I had any questions, and then left. These two certainly looked and dressed like anaesthetists, but I have to say that the third man to introduce himself as my anaesthetist was the most convincing, as he was sticking a needle into my arm at the time.
There was a lot of sitting around informing people that I wasn't pregnant that morning, plus the signing of various consent forms allowing them to keep slices of tumour for research purposes and promising them not to haunt them if I died. As hospitals are really an ideal setting for poltergeist activity, I for one felt this was pretty harsh.
At some point a nurse asked me to get changed into one of their haute couture hospital gowns, so I did. The lady in the next bed was wheeled off to her surgery. Somewhat later, two young men arrived and announced they had come to take me for a CT scan of my pituitary.* No-one had told me that I was going to have a scan, so this was something of a surprise.
The porters went out to confer with the nurses. There was a considerable amount of to-ing and fro-ing, mind-changing, phonecalls and confusion, but eventually it was decided that yes, I was indeed due to have a CT scan before the surgery. I was told it could take up to an hour, so I cheerily waved my parents goodbye and was wheeled away in my bed by the porters, whose social lives I learned quite a lot about on the way to the distant CT scanner.
I was taken into the scanning waiting room, in the bowels of the hospital, and my bed was parked up. It was not a cheery place; everyone else in there was really not well. I felt strangely fraudulent, sitting up in my wheely bed like a perfectly healthy person, waiting.
And waiting.
There was a bit of a backlog at the scanner, as per usual. I have no idea how long I had been waiting, when all of a sudden, Mr Pout (one of my surgeons - I wrote about him in this post) appeared by the side of my bed, all scrubbed up and out of breath.
"Miss Grey, we've been looking for you!" he cried, in what I felt was an unreasonably reproachful manner given that I had quite clearly not wheeled myself down there. "Everyone's waiting for you in theatre right now!"
Of all the WTF moments that the hospital has given me in our association, that was certainly the strangest to date. Mr Pout grabbed the bed and attempted to wheel me to the operating theatre; not an easy task, plus it was quite a long way away. Hospital beds are like larger, more dangerous supermarket trolleys and require two people for optimum maneouverability. Fortunately we (quite literally) bumped into one of Mr Pout's colleagues along the way, and she lent a hand wheeling me into a lift.
Along the way, Mr Pout breathlessly explained that they had originally been intending to do my pituitary surgery with teeny instruments and the aid of an ENT team (Ear, Norse & Throat; Treebeard doesn't do transsphenoidal surgery), due to my "narrow nasal passages".** In order for this to happen, the ENT people neeed a CT scan. However, when my surgery had been cancelled, they had cancelled the ENT team and had been unable to un-cancel them; consequently they would be doing the surgery the normal way, assuming the instruments would fit up my nose. There was a slight risk, Mr Pout informed me, that they would not.
At this point, Mr Hamstercheeks, the head surgeon appeared. I had never met him before. "
I was just explaining that the surgery might not be able to go ahead if her nose is too small," said Mr Pout.
Mr Hamstercheeks looked at my nose. "No, it'll be fine," he said.
HARSH.
"Can someone please make sure that my parents know I've gone into surgery?" I asked. A nurse asked for their details, picked a phone off the wall and dialled the ward where I had been to request that my parents were told. As I found out later however, somehow the receptionist on the ward managed to get epically confused and my parents were never told, despite asking where I was. They weren't bothered though, they went into town for lunch.
At this point I was still wearing my glasses, hairband, and slippers, which I had to take off; I was super nervous, but in a way the complete muddle over my surgery was kind of good - because it meant I was laughing as they wheeled me into the prep room. I met the third anaesthetist and various people starting sticking needles in my arms. It turns out the third anaesthetist used to live in the same road as me, so we got chatting about the local takeaways. At one point I thought I should just lie back and relax, let the various medical professionals do their thing - but then I suddenly became deeply paranoid that they'd think I was asleep when I wasn't (stupid I know) so I decided to keep talking as long as I was awake.
As this is what I usually do anyway, it was not a problem.
_______________________
*Possibly I should note that they were hospital porters, not kidnappers.
**If you haven't worked it out, transsphenoidal pituitary surgery involves sticking surgical instruments up your nose and drilling through the back of it to gain access to the inside of your skull.
Or rather, it didn't. It was still dark when I got up that morning; I had to report to the hospital at 7am and I needed to get up early enough to allow time for paranoid checking and re-checking of my bag. Thank god for the internet - I packed in a rush the night before, but all I had to do was Google "what to pack for hospital" and I was supplied with numerous checklists that helped ensure I did not forget my toothbrush.
I reported in, accompanied by my mum and dad, and was duly supplied with my attractive compression stockings and various leaflets. I was assigned a waiting bed in the neuro day ward, and another lady who was having the same surgery was there as well. One of the nurses ran through the pre-operative assessment form again and I was swabbed for MRSA - apparently if you come up positive they don't cancel your operation but you do get moved to the end of the queue for that day, in case you end up contaminating the patients after you.
It was at this point that I started meeting anaesthetists. A woman walked into the room and introduced herself as my anaesthetist, asked me some questions, and let me ask her any questions I had. Shortly after she left, a man walked into the room, introduced himself as my anaesthetist, seemed surprised when I said I had already met someone claiming to be my anaesthetist, asked if I had any questions, and then left. These two certainly looked and dressed like anaesthetists, but I have to say that the third man to introduce himself as my anaesthetist was the most convincing, as he was sticking a needle into my arm at the time.
There was a lot of sitting around informing people that I wasn't pregnant that morning, plus the signing of various consent forms allowing them to keep slices of tumour for research purposes and promising them not to haunt them if I died. As hospitals are really an ideal setting for poltergeist activity, I for one felt this was pretty harsh.
At some point a nurse asked me to get changed into one of their haute couture hospital gowns, so I did. The lady in the next bed was wheeled off to her surgery. Somewhat later, two young men arrived and announced they had come to take me for a CT scan of my pituitary.* No-one had told me that I was going to have a scan, so this was something of a surprise.
The porters went out to confer with the nurses. There was a considerable amount of to-ing and fro-ing, mind-changing, phonecalls and confusion, but eventually it was decided that yes, I was indeed due to have a CT scan before the surgery. I was told it could take up to an hour, so I cheerily waved my parents goodbye and was wheeled away in my bed by the porters, whose social lives I learned quite a lot about on the way to the distant CT scanner.
I was taken into the scanning waiting room, in the bowels of the hospital, and my bed was parked up. It was not a cheery place; everyone else in there was really not well. I felt strangely fraudulent, sitting up in my wheely bed like a perfectly healthy person, waiting.
And waiting.
There was a bit of a backlog at the scanner, as per usual. I have no idea how long I had been waiting, when all of a sudden, Mr Pout (one of my surgeons - I wrote about him in this post) appeared by the side of my bed, all scrubbed up and out of breath.
"Miss Grey, we've been looking for you!" he cried, in what I felt was an unreasonably reproachful manner given that I had quite clearly not wheeled myself down there. "Everyone's waiting for you in theatre right now!"
Of all the WTF moments that the hospital has given me in our association, that was certainly the strangest to date. Mr Pout grabbed the bed and attempted to wheel me to the operating theatre; not an easy task, plus it was quite a long way away. Hospital beds are like larger, more dangerous supermarket trolleys and require two people for optimum maneouverability. Fortunately we (quite literally) bumped into one of Mr Pout's colleagues along the way, and she lent a hand wheeling me into a lift.
Along the way, Mr Pout breathlessly explained that they had originally been intending to do my pituitary surgery with teeny instruments and the aid of an ENT team (Ear, Norse & Throat; Treebeard doesn't do transsphenoidal surgery), due to my "narrow nasal passages".** In order for this to happen, the ENT people neeed a CT scan. However, when my surgery had been cancelled, they had cancelled the ENT team and had been unable to un-cancel them; consequently they would be doing the surgery the normal way, assuming the instruments would fit up my nose. There was a slight risk, Mr Pout informed me, that they would not.
At this point, Mr Hamstercheeks, the head surgeon appeared. I had never met him before. "
I was just explaining that the surgery might not be able to go ahead if her nose is too small," said Mr Pout.
Mr Hamstercheeks looked at my nose. "No, it'll be fine," he said.
HARSH.
"Can someone please make sure that my parents know I've gone into surgery?" I asked. A nurse asked for their details, picked a phone off the wall and dialled the ward where I had been to request that my parents were told. As I found out later however, somehow the receptionist on the ward managed to get epically confused and my parents were never told, despite asking where I was. They weren't bothered though, they went into town for lunch.
At this point I was still wearing my glasses, hairband, and slippers, which I had to take off; I was super nervous, but in a way the complete muddle over my surgery was kind of good - because it meant I was laughing as they wheeled me into the prep room. I met the third anaesthetist and various people starting sticking needles in my arms. It turns out the third anaesthetist used to live in the same road as me, so we got chatting about the local takeaways. At one point I thought I should just lie back and relax, let the various medical professionals do their thing - but then I suddenly became deeply paranoid that they'd think I was asleep when I wasn't (stupid I know) so I decided to keep talking as long as I was awake.
As this is what I usually do anyway, it was not a problem.
_______________________
*Possibly I should note that they were hospital porters, not kidnappers.
**If you haven't worked it out, transsphenoidal pituitary surgery involves sticking surgical instruments up your nose and drilling through the back of it to gain access to the inside of your skull.
Saturday, 23 June 2012
Hyperthyroid Patients, Unite!
Subtitle: You have nothing to lose but your goitres!
So here's the strange thing: I have a TSHoma - a pituitary tumour which secretes TSH (thyroid stimulating hormone). It's super rare. According to my endocrinologist there are maybe thirteen or so other people in the UK with this condition which, in a population of 63 million, is Not Very Many, although it probably does go largely underdiagnosed; I had my first symptoms when I was around 16 or 17 and didn't get a diagnosis until I was 22.
But anyway, the point is that it can sometimes almost feel like two separate conditions; I have the pituitary adenoma, and the hyperthyroidism it causes. My symptoms, apart from the odd nasty headache, are pretty much exclusively those of hyperthyroidism; my treatment is for the adenoma. Consequently, although I am in all seriousness a paid-up member of the Pituitary Foundation and can chat about transsphenoidal surgery and lanreotide injections with the best of them, I'm missing out on the chance to bitch and moan about sinus tachycardia and getting the shakes with other people whose blood has turned to delicious thyroid hormone stew. More fool me!
People with excess thyroid hormone usually get that way from either a) taking too high a dose of thyroxine medication (exogenous thyrotoxicosis), or b) something else. The former can be dealt with simply by reducing the dose. The latter is more complicated. Possible causes include:
Graves Disease - the most common cause of hyperthyroidism, Graves is an autoimmune disease which can be treated with anithyroid drugs, surgery to remove part or all of the thyroid, or a dose of radiactive iodine. After such treatment there's a substantial and ironic risk of hypothyroidism - i.e. not having enough thyroid hormone.
Tumours of the thyroid gland - thyroid adenoma is a benign tumour of the thyroid gland which may secrete large amounts of thyroid hormone, while thyroid nodules may be benign or malignant and again may or may not release thyroid hormone - in some cases they may actually inhibit its production, causing hypothyroidism.
Thyroiditis - inflammation of the thyroid gland. Although this often initially leads to high levels of thyroid hormone being released, it usually progresses to thyroid disfunction with the gland unable to produce sufficient hormones, and ultimately causes hypothyroidism. Around 7% of women experience temporary thyroiditis after giving birth (postpartum thyroiditis) which may lead to hyper- or hypothyroidism, or both; this usually resolves itself.
TSH hypersecretion - super rare, but usually caused by a pituitary adenoma (hurrah!). However, I believe there is also the possibility of a tumour in the hypothalamus causing excess Thyrotropin Releasing Hormone and hyperstimulating the pituitary gland to overproduce TSH, which in turn would hyperstimulate the thyroid gland to overproduce thyroid hormone. Again, it's very rare.
I guess really I should be grateful for this, as effectively I have two health conditions for the price of one. This blog is usually focussed mainly around the dramatic "there's a tumour in my head!" aspects of my pituitary adenoma, and poor little hyperthyroidism barely gets a look in, except for when I complain about my tachycardia/hair falling out/absurd appetite issues. But no longer! From now on I vow to go on about hyperthyroidism more. So you guys will get two lots of whingeing for the price of one!
So here's the strange thing: I have a TSHoma - a pituitary tumour which secretes TSH (thyroid stimulating hormone). It's super rare. According to my endocrinologist there are maybe thirteen or so other people in the UK with this condition which, in a population of 63 million, is Not Very Many, although it probably does go largely underdiagnosed; I had my first symptoms when I was around 16 or 17 and didn't get a diagnosis until I was 22.
But anyway, the point is that it can sometimes almost feel like two separate conditions; I have the pituitary adenoma, and the hyperthyroidism it causes. My symptoms, apart from the odd nasty headache, are pretty much exclusively those of hyperthyroidism; my treatment is for the adenoma. Consequently, although I am in all seriousness a paid-up member of the Pituitary Foundation and can chat about transsphenoidal surgery and lanreotide injections with the best of them, I'm missing out on the chance to bitch and moan about sinus tachycardia and getting the shakes with other people whose blood has turned to delicious thyroid hormone stew. More fool me!
People with excess thyroid hormone usually get that way from either a) taking too high a dose of thyroxine medication (exogenous thyrotoxicosis), or b) something else. The former can be dealt with simply by reducing the dose. The latter is more complicated. Possible causes include:
Graves Disease - the most common cause of hyperthyroidism, Graves is an autoimmune disease which can be treated with anithyroid drugs, surgery to remove part or all of the thyroid, or a dose of radiactive iodine. After such treatment there's a substantial and ironic risk of hypothyroidism - i.e. not having enough thyroid hormone.
Tumours of the thyroid gland - thyroid adenoma is a benign tumour of the thyroid gland which may secrete large amounts of thyroid hormone, while thyroid nodules may be benign or malignant and again may or may not release thyroid hormone - in some cases they may actually inhibit its production, causing hypothyroidism.
Thyroiditis - inflammation of the thyroid gland. Although this often initially leads to high levels of thyroid hormone being released, it usually progresses to thyroid disfunction with the gland unable to produce sufficient hormones, and ultimately causes hypothyroidism. Around 7% of women experience temporary thyroiditis after giving birth (postpartum thyroiditis) which may lead to hyper- or hypothyroidism, or both; this usually resolves itself.
TSH hypersecretion - super rare, but usually caused by a pituitary adenoma (hurrah!). However, I believe there is also the possibility of a tumour in the hypothalamus causing excess Thyrotropin Releasing Hormone and hyperstimulating the pituitary gland to overproduce TSH, which in turn would hyperstimulate the thyroid gland to overproduce thyroid hormone. Again, it's very rare.
I guess really I should be grateful for this, as effectively I have two health conditions for the price of one. This blog is usually focussed mainly around the dramatic "there's a tumour in my head!" aspects of my pituitary adenoma, and poor little hyperthyroidism barely gets a look in, except for when I complain about my tachycardia/hair falling out/absurd appetite issues. But no longer! From now on I vow to go on about hyperthyroidism more. So you guys will get two lots of whingeing for the price of one!
Saturday, 16 June 2012
A Lesson From My Former Landlady: Part 1
I was originally going to name this post something else, but in deference to my readers who have delicate constitutions, I decided against it. Anyway. While it will be something of a massive rant, it's actually a good way of illuminating a topic that I've been wanting to write about for a while.
crazy bitch June - gave me notice in January that she'd need me to move out in June because she wanted to redecorate the room I was in. This seemed a suspect excuse, as my room was the only part of the house not in need of decorating, but no matter; I didn't have the chance to discuss the issue with her because she took the rather peculiar decision not to tell me in person, but to wait until I went on a weekend away and then slip a note about this under my door. I started to look for a new place almost immediately, because I knew I would have exams in June and didn't need the stress of moving out at the same time.
In March, I found a lovely new house nearby and gave her my notice. She said that this was fine as it didn't matter to her when the room was redecorated. I tried to organise a time to go through the inventory and get my deposit back, but she was strangely cagey about it. I offered to go through it with her on the day I was moving out, having just cleaned the room with my mum, but she refused. After moving out, again I kept trying to arrange a time to go through it all with her but she continued putting me off until I suddenly received a text message ultimatum that it had to be on that Friday (a day which I had already informed her I wouldn't be able to do) because she had someone moving in the next day.*
I spoke with my manager and was able to leave work early that day in order to go and see her, despite the fact that things were super busy that week and I knew that I would have to work over the weekend to make up the time I lost by leaving early. So off I trotted to my old house.
The instant I got there, things seemed strange. I was let in, but although I had explained to June that it was an awkward time and I would be in a rush, she seemed surprised that I was in a hurry and she stomped upstairs, obviously in a bad mood.
June was always a shouty woman. When her kids were staying, there was shouting every evening - about eating dinner, about singing lessons, about baths, you name it. What I was not prepared for, however, was for her to turn her shoutyness on me practically as soon as we stepped into my former bedroom. She pointed to a laughably small build-up of scale on the bathroom tap and had a go about it - then when I pointed out that it had always been there, she claimed that if there had been scale on the tap, she would have written it down in the inventory. I pointed out that this was not the case, as there were various holes in the walls and floor, the broken curtain fitting etc. which were not in the inventory - seeing as the inventory is a list of the room's furniture, not a detailed description of every aspect of its decor. She yelled that the holes in the floor were "not the problem" and continued shouting, accusing me of allowing a terrible limescale build-up in the shower, "ruining" a bookshelf, leaving the room dusty, etc. etc.
She accused me of not cleaning the room at all before I left; I pointed out that a) not only has she actually seen me going upstairs and downstairs with mops and buckets and cleaning products on the day I moved out but I had also spoken to her about which mop she would rather I use to clean the floor, and b) because she refused to do the inventory on the day, obviously the room now had two week's worth of dust in it. Which only made her shout more. At one point, she yelled "Frankly, Emer, I don't believe you did any cleaning the whole time you were here!" Which is a bit of a bloody cheek coming from a woman whose kitchen was so permanently disgusting that a) it attracted mice** and b) my appalled yet kindly mother did some of June's washing up on the day I moved out just to make it less horrific.
By this time, all the shouting was really starting to stress me out; I was on the verge of tears. I'd been on the lanreotide injections for a few months, and the thing about them that I think I've mentioned before is that they really do make me a lot more emotional and easily upset, for some reason. I had never told June about the whole brain tumour thing or the injections or anything, because frankly I didn't think it was any of her business and it tends to make things awkward.
Anyway, I asked her (politely!) to stop shouting. She shouted "I'M NOT SHOUTING!" at me, then continued shouting. I was so stressed out by the whole thing that I was physically shaking and feeling sick, so when she told me she was going to dock me 10% of my deposit (apparently cleaning a tap costs £65 these days. I'm not sure she's doing it right) I barely even argued because I was so desperate to get out of there. I was still trying to stay calm but I was kind of furious at myself for being so easily upset, so when she continued ranting as she wrote out the cheque I said: "June, I really don't appreciate your attitude today; I made a real effort to fit in with your plans even though it was extremely inconvenient for me, I took time off work and you've been nothing but rude to me the entire time I've been here." Predictably, she started shouting again, threatened to rip up the cheque, blah blah blah.
When I left my former home (with the cheque, thank Christ), I got about four steps down the road before bursting into tears and I was still shaking by the time I got home, at which point I realised that I was probably a bit hypoglycaemic (occassional side effect of the lanreotide injections), ate a couple of biscuits and felt slightly less awful, despite the fact that I had just effectively paid £65 to run away. Fortunately my lovely boyfriend was visiting that evening and he made me feel a lot better, although the whole story made him kind of furious. I believe pissing through June's letterbox was mentioned, and to this day I slightly regret my decision to take the high ground there...
It seems pretty plain to me that June's plan right from the start - before I'd even vacated my room or she had seen it - was to get that money off me. The way she dodged my emails trying to organise it, and then suddenly demanded to have it on a day she already knew I couldn't do, indicates to me that she was hoping I would say I couldn't come, so that she could just arbitraily dock the money and send the cheque in the post without having to do it to my face. The way she avoided doing the inventory on the day I moved out when my mother was there as a witness, and her incredibly aggressive behaviour as soon as I stepped through the door all make it seem as though she was determined to get that £65 by hook or by crook.
That kind of behaviour isn't acceptable from anyone to anyone. Society might consider it rather worse for my landlady to try to intimidate me, a 23 year old girl than, say, a 46 year old bloke. Is that fair? No. Would she even try it on with a 46 year old bloke? Who knows? I certainly doubt she would have behaved in the same way if my boyfriend had been with me. And what about the fact that I'm sick? If June had known about my pituitary tumour, about the fact that I was on hormone treatment which made me feel emotionally pretty delicate and physically resulted in odd bouts of hypoglycaemia, would she have still done it? If I went up to her now, knocked on her door and said "Oh, by the way, June, just so you know - I have a benign brain tumour," would that change the way she felt about her behaviour towards me?
Because it shouldn't.
You can't always tell if someone is sick. Not every ill person has a wheelchair or a bandage or an obvious badge of their personal infirmity. Heck, even if you now them pretty well - even if you live with them - you might not know about it. Yet the default in society is to treat everyone as if they were well and make 'special allowances' for sick people - once they produce a medical certificate. There are plenty of people in the world who would probably be horrified to realise that the shop assistant they were a bit of a dick to yesterday has a brain tumour, or the slightly unhelpful telephone operator they're shouting at has just come back to work after going through chemo. We do these kind of things all the time - and I'm by no means claiming that I'm innocent of this, by the way - and yet, if we knew of the person's illness, or bereavement, or disability, we would never dream of treating them in that way. And the only way to get around this is by trying to treat everyone with as much respect as you can muster, all the time. And even when someone is behaving appallingly, you need to give them the benefit of the doubt, because you just don't know. And that is a really difficult thing to do.
Because here's the killer question: If I found out that June had just been told she had Huntington's, or MS, or cancer, would that change how I felt about her behaviour - even though it wouldn't excuse it?
Of course it would.
And that's why I'm glad we didn't go piss on her doorstep.
Well... mostly glad.
____________________________________________________
* So much for "redecorating".
**Which June then killed, which seemed rather unfair. If she didn't leave food for them around all over the place, those poor mice would probably still be alive, frolicking happily in the compost heap.
***
So for about eight or nine months from last summer, I lived as a tenant in a house occupied by my former landlady and her two children, who split their time between her house and their dad's. My former landlady - let's call her In March, I found a lovely new house nearby and gave her my notice. She said that this was fine as it didn't matter to her when the room was redecorated. I tried to organise a time to go through the inventory and get my deposit back, but she was strangely cagey about it. I offered to go through it with her on the day I was moving out, having just cleaned the room with my mum, but she refused. After moving out, again I kept trying to arrange a time to go through it all with her but she continued putting me off until I suddenly received a text message ultimatum that it had to be on that Friday (a day which I had already informed her I wouldn't be able to do) because she had someone moving in the next day.*
I spoke with my manager and was able to leave work early that day in order to go and see her, despite the fact that things were super busy that week and I knew that I would have to work over the weekend to make up the time I lost by leaving early. So off I trotted to my old house.
The instant I got there, things seemed strange. I was let in, but although I had explained to June that it was an awkward time and I would be in a rush, she seemed surprised that I was in a hurry and she stomped upstairs, obviously in a bad mood.
June was always a shouty woman. When her kids were staying, there was shouting every evening - about eating dinner, about singing lessons, about baths, you name it. What I was not prepared for, however, was for her to turn her shoutyness on me practically as soon as we stepped into my former bedroom. She pointed to a laughably small build-up of scale on the bathroom tap and had a go about it - then when I pointed out that it had always been there, she claimed that if there had been scale on the tap, she would have written it down in the inventory. I pointed out that this was not the case, as there were various holes in the walls and floor, the broken curtain fitting etc. which were not in the inventory - seeing as the inventory is a list of the room's furniture, not a detailed description of every aspect of its decor. She yelled that the holes in the floor were "not the problem" and continued shouting, accusing me of allowing a terrible limescale build-up in the shower, "ruining" a bookshelf, leaving the room dusty, etc. etc.
She accused me of not cleaning the room at all before I left; I pointed out that a) not only has she actually seen me going upstairs and downstairs with mops and buckets and cleaning products on the day I moved out but I had also spoken to her about which mop she would rather I use to clean the floor, and b) because she refused to do the inventory on the day, obviously the room now had two week's worth of dust in it. Which only made her shout more. At one point, she yelled "Frankly, Emer, I don't believe you did any cleaning the whole time you were here!" Which is a bit of a bloody cheek coming from a woman whose kitchen was so permanently disgusting that a) it attracted mice** and b) my appalled yet kindly mother did some of June's washing up on the day I moved out just to make it less horrific.
By this time, all the shouting was really starting to stress me out; I was on the verge of tears. I'd been on the lanreotide injections for a few months, and the thing about them that I think I've mentioned before is that they really do make me a lot more emotional and easily upset, for some reason. I had never told June about the whole brain tumour thing or the injections or anything, because frankly I didn't think it was any of her business and it tends to make things awkward.
Anyway, I asked her (politely!) to stop shouting. She shouted "I'M NOT SHOUTING!" at me, then continued shouting. I was so stressed out by the whole thing that I was physically shaking and feeling sick, so when she told me she was going to dock me 10% of my deposit (apparently cleaning a tap costs £65 these days. I'm not sure she's doing it right) I barely even argued because I was so desperate to get out of there. I was still trying to stay calm but I was kind of furious at myself for being so easily upset, so when she continued ranting as she wrote out the cheque I said: "June, I really don't appreciate your attitude today; I made a real effort to fit in with your plans even though it was extremely inconvenient for me, I took time off work and you've been nothing but rude to me the entire time I've been here." Predictably, she started shouting again, threatened to rip up the cheque, blah blah blah.
When I left my former home (with the cheque, thank Christ), I got about four steps down the road before bursting into tears and I was still shaking by the time I got home, at which point I realised that I was probably a bit hypoglycaemic (occassional side effect of the lanreotide injections), ate a couple of biscuits and felt slightly less awful, despite the fact that I had just effectively paid £65 to run away. Fortunately my lovely boyfriend was visiting that evening and he made me feel a lot better, although the whole story made him kind of furious. I believe pissing through June's letterbox was mentioned, and to this day I slightly regret my decision to take the high ground there...
It seems pretty plain to me that June's plan right from the start - before I'd even vacated my room or she had seen it - was to get that money off me. The way she dodged my emails trying to organise it, and then suddenly demanded to have it on a day she already knew I couldn't do, indicates to me that she was hoping I would say I couldn't come, so that she could just arbitraily dock the money and send the cheque in the post without having to do it to my face. The way she avoided doing the inventory on the day I moved out when my mother was there as a witness, and her incredibly aggressive behaviour as soon as I stepped through the door all make it seem as though she was determined to get that £65 by hook or by crook.
That kind of behaviour isn't acceptable from anyone to anyone. Society might consider it rather worse for my landlady to try to intimidate me, a 23 year old girl than, say, a 46 year old bloke. Is that fair? No. Would she even try it on with a 46 year old bloke? Who knows? I certainly doubt she would have behaved in the same way if my boyfriend had been with me. And what about the fact that I'm sick? If June had known about my pituitary tumour, about the fact that I was on hormone treatment which made me feel emotionally pretty delicate and physically resulted in odd bouts of hypoglycaemia, would she have still done it? If I went up to her now, knocked on her door and said "Oh, by the way, June, just so you know - I have a benign brain tumour," would that change the way she felt about her behaviour towards me?
Because it shouldn't.
You can't always tell if someone is sick. Not every ill person has a wheelchair or a bandage or an obvious badge of their personal infirmity. Heck, even if you now them pretty well - even if you live with them - you might not know about it. Yet the default in society is to treat everyone as if they were well and make 'special allowances' for sick people - once they produce a medical certificate. There are plenty of people in the world who would probably be horrified to realise that the shop assistant they were a bit of a dick to yesterday has a brain tumour, or the slightly unhelpful telephone operator they're shouting at has just come back to work after going through chemo. We do these kind of things all the time - and I'm by no means claiming that I'm innocent of this, by the way - and yet, if we knew of the person's illness, or bereavement, or disability, we would never dream of treating them in that way. And the only way to get around this is by trying to treat everyone with as much respect as you can muster, all the time. And even when someone is behaving appallingly, you need to give them the benefit of the doubt, because you just don't know. And that is a really difficult thing to do.
Because here's the killer question: If I found out that June had just been told she had Huntington's, or MS, or cancer, would that change how I felt about her behaviour - even though it wouldn't excuse it?
Of course it would.
And that's why I'm glad we didn't go piss on her doorstep.
Well... mostly glad.
____________________________________________________
* So much for "redecorating".
**Which June then killed, which seemed rather unfair. If she didn't leave food for them around all over the place, those poor mice would probably still be alive, frolicking happily in the compost heap.
Saturday, 19 May 2012
5 Things Healthy People Miss Out On
Over at Cushie Bloggers for the month of April, some bloggers took part in the Cushing's Awareness Challenge during April; the aim was to blog about something to do with Cushing's Disease every day of April. Well, I don't have Cushing's Disease, and it's now May. But the Challenge includes a list of prompts and suggestions of topics for bloggers with Cushing's disease to write about, and it looks like a good list to me for anyone with a pituitary adenoma to co-opt.
So, my first post from the list is in honour of both Cushing's Awareness and TSHoma Cognisance. And in fairness, I strongly suspect that awareness of thyroid-stimulating-hormone-producing pituitary adenomas is even lower than awareness of Cushing's Disease...
I like to think I am a fairly optimistic and sunny person, so instead of going down the depressing route, I have decided to start with a post focusing on the awesome aspects of being sick. Presenting:
1. You always have an excuse.
"Excuse me, madam, but you would appear to have inadvertently stabbed this man".
"Oh, I'm so sorry officer, it must be my brain tumour playing up again. Forgive me."
"Not at all, my good woman. Please continue about your business. And get well soon!"
In fact, I never have stabbed a man, but I fondly imagine that were I to do so, this is roughly how the conversation with the policeperson would go afterwards. Having a tumour in your head is rubbish, but it's one hell of an opportunity to get away with doing what you want.
Want a seat on the bus? Mention the tumour.
Late for a deadline? Mention the tumour.
Want to freak out a stranger? Mention the tumour.
In detail.
2. Improved and terrifying knowledge of medical terminology.
You know, if I didn't have a pituitary adenoma, I would never have heard of adrenocorticotrophic hormone, let alone be able to pronounce it. And now, not only do I have an expanded vocabulary for actual words, but I know the abbreviations too. I know that my form for TFT bloods will check my TSH, FT3 and FT4 - plus usually my endocrinologist requests SHBG and alpha subunit. Because that is just how he rolls.
3. A warm and fuzzy glow about UK taxation.
You know what I don't mind? When, at the end of the month, my paycheck is shrunk by several hundred pounds thanks to paying tax and National Insurance contributions. You know why I don't mind it? Because one monthly dose of lanreotide costs more than twice what I pay in tax. And that's not including the costs of my regular visits to the doctor, the nurse, the hospital, my other prescriptions, my MRI scans, my surgery, my blood tests.
I can't imagine how horrendous it would be to have to pay for this stuff in a country without a decent national healthcare system.
4. Joie De Vivre
It sounds pretty cheesy to say that being ill gives you a newfound appreciation for life. That's because it is a cheesy thing to say. However, it is also true. The feeling of achievement when, after pituitary surgery, you manage to very slowly walk the ten minutes to the nearest pub is as satisfying as learning to play the tuba. Probably more satisfying, in fact. After all, I've never met a happy tuba player.*
5. Writing this blog
I would never in a hundred years have managed to keep up writing a blog this long (since last August… that's ten months!) if I had not been ill. No matter what topic I picked, it would surely have lapsed, just like every other diary I've ever attempted to write has lapsed, usually within about a week. But writing so often has been really good for me; it's improved my style, it's made me more comfortable with just sitting down and typing - and searching for Interesting Medical Facts of the Week has taught me a hell of a lot. And being ill is what has made me keep this up. I can't ever lapse for long, because there's always going to be something I want to complain about.
_____________________________________________
*Disclaimer: I have never met a tuba player.
So, my first post from the list is in honour of both Cushing's Awareness and TSHoma Cognisance. And in fairness, I strongly suspect that awareness of thyroid-stimulating-hormone-producing pituitary adenomas is even lower than awareness of Cushing's Disease...
I like to think I am a fairly optimistic and sunny person, so instead of going down the depressing route, I have decided to start with a post focusing on the awesome aspects of being sick. Presenting:
5 THINGS HEALTHY PEOPLE MISS OUT ON
Or: Why It Is Great To Be Me and Be Ill
1. You always have an excuse.
"Excuse me, madam, but you would appear to have inadvertently stabbed this man".
"Oh, I'm so sorry officer, it must be my brain tumour playing up again. Forgive me."
"Not at all, my good woman. Please continue about your business. And get well soon!"
In fact, I never have stabbed a man, but I fondly imagine that were I to do so, this is roughly how the conversation with the policeperson would go afterwards. Having a tumour in your head is rubbish, but it's one hell of an opportunity to get away with doing what you want.
Want a seat on the bus? Mention the tumour.
Late for a deadline? Mention the tumour.
Want to freak out a stranger? Mention the tumour.
In detail.
2. Improved and terrifying knowledge of medical terminology.
You know, if I didn't have a pituitary adenoma, I would never have heard of adrenocorticotrophic hormone, let alone be able to pronounce it. And now, not only do I have an expanded vocabulary for actual words, but I know the abbreviations too. I know that my form for TFT bloods will check my TSH, FT3 and FT4 - plus usually my endocrinologist requests SHBG and alpha subunit. Because that is just how he rolls.
3. A warm and fuzzy glow about UK taxation.
You know what I don't mind? When, at the end of the month, my paycheck is shrunk by several hundred pounds thanks to paying tax and National Insurance contributions. You know why I don't mind it? Because one monthly dose of lanreotide costs more than twice what I pay in tax. And that's not including the costs of my regular visits to the doctor, the nurse, the hospital, my other prescriptions, my MRI scans, my surgery, my blood tests.
I can't imagine how horrendous it would be to have to pay for this stuff in a country without a decent national healthcare system.
4. Joie De Vivre
It sounds pretty cheesy to say that being ill gives you a newfound appreciation for life. That's because it is a cheesy thing to say. However, it is also true. The feeling of achievement when, after pituitary surgery, you manage to very slowly walk the ten minutes to the nearest pub is as satisfying as learning to play the tuba. Probably more satisfying, in fact. After all, I've never met a happy tuba player.*
5. Writing this blog
I would never in a hundred years have managed to keep up writing a blog this long (since last August… that's ten months!) if I had not been ill. No matter what topic I picked, it would surely have lapsed, just like every other diary I've ever attempted to write has lapsed, usually within about a week. But writing so often has been really good for me; it's improved my style, it's made me more comfortable with just sitting down and typing - and searching for Interesting Medical Facts of the Week has taught me a hell of a lot. And being ill is what has made me keep this up. I can't ever lapse for long, because there's always going to be something I want to complain about.
_____________________________________________
*Disclaimer: I have never met a tuba player.
Friday, 11 May 2012
Ding Ding: Round Two
I had been holding off posting for a few days, not out of laziness,* but because I was waiting to find out the outcome of my hospital appointment last Thursday. And then it took me absolutely ages to type this up because, let's face it, it's dull and complex. For the last couple of months I have been largely in the dark as to the results of my blood tests and recent MRi scan, so I really had no idea what to expect.
What I did not expect was to find the television in the endocrine waiting room playing Cash In The Attic. This television has, to my knowledge, never previously displayed anything other than The Jeremy Kyle Show. I always assumed that the hospital trust had performed some kind of patient survey and determined that diabetics and people with pituitary tumours prefer their televisual experiences to involve shouting, paternity testing, and the phrase "Madam, you disgust me".
I digress.
First up, as per usual, I was weighed (lost: one kilogram since February, almost certainly due to forswearing chocolate over Lent rather than the TSH-oma) and had my blood pressure taken (standing blood pressure: 118/76 - score! It would appear that switching my heart medication back to propranolol has made a difference). Then I had a quick review with one of the endocrinologists about how my symptoms have changed since being on lanreotide injections (not much).
Then the doctor ran away and eventually returned with two other endocrinologists in tow, who all stood at the other end of the room and surveyed me like something interesting they'd found in a jar at the Hunterian Museum.**
They have been somewhat confused by the fact that my levels of various thyroid hormones have remained roughly the same since being on the lanreotide injections, despite the fact that you would expect them to drop.
Additionally, the MRI scan of my pituitary was a little tricky to interpret. Essentially, the pituitary gland is like a tiny upside-down lollipop just below your brain. The stick of the lollipop is called the infundibular stalk*** and it connects the pituitary gland to the hypothalamus. My original MRI pituitary scan showed a great big gobstopper lollipop with a dark patch of necrosis in the middle, where the tissue inside the tumour had died off a bit. To picture this, first imagine a lollipop with a liquid centre, and then imagine something a lot more disgusting. But my latest scan shows a rather more normal-sized lollipop which hasn't grown since my surgery (hurrah!). However, the stick of the lollipop is slightly bending to one side.
Given that there's limited space inside your head for these things to grow, a wonky pituitary stalk can indicate that the bulk of a tumour is pushing the rest of the pituitary gland to one side. So the area of pituitary gland on the left-hand side is now under suspicion. I have to say, looking at the scans was kind of awesome, because it's not like when people show you the ultrasound of their baby and you have to pretend you totally see what they're talking about. I actually could see what they were talking about.
But the problem with MRIs is that they can show you what's there, but not what it's doing. So although it looks like there's probably a bit of tumour left on one side of my pituitary gland and that may well be what's still causing my symptoms, it's still possible that it's not that bit at all. And it would be rubbish to have surgery, take that bit out and then discover it was actually healthy pituitary tissue.
So my doctors want me to have two combined PET/CT scans. PET (Positron Emission Tomography) scans are super colourful and pretty, but that's not the only reason they want me to have one (I hope).
Basically, PET scans can show those areas of the pituitary that are most metabolically active. Inactive areas are dark. So the idea is that I will have one of these scans while not on any kind of medication, which should show the whole pituitary lit up like a christmas tree, and then have another scan after three months on a higher dose of lanreotide, which should suppress the hormone production in the TSHoma. Any areas that go from being bright blue on the first scan to being dark in the second scan are probably tumour. Then, if the tumour is in an easily-accessible area of my head, I might have surgery again. If it's somewhere tricky to reach, I'll probably just continue to have regular injections of lanreotide indefinitely.
So I'm not having any more lanreotide injections for six weeks, so that it's definitely completely out of my system. And in the meantime they want to have me come in overnight one for some research tests on my metabolism and things. Essentially the hospital are collecting patients with pituitary tumours that produce TSH and studying us, so I am now officially a guinea pig.
_______________________________________________
*How could you ever think such a thing?
**I'm joking, they were very nice.
***Or just the pituitary stalk, but you don't get to use a word like "infundibular" every day.
What I did not expect was to find the television in the endocrine waiting room playing Cash In The Attic. This television has, to my knowledge, never previously displayed anything other than The Jeremy Kyle Show. I always assumed that the hospital trust had performed some kind of patient survey and determined that diabetics and people with pituitary tumours prefer their televisual experiences to involve shouting, paternity testing, and the phrase "Madam, you disgust me".
I digress.
First up, as per usual, I was weighed (lost: one kilogram since February, almost certainly due to forswearing chocolate over Lent rather than the TSH-oma) and had my blood pressure taken (standing blood pressure: 118/76 - score! It would appear that switching my heart medication back to propranolol has made a difference). Then I had a quick review with one of the endocrinologists about how my symptoms have changed since being on lanreotide injections (not much).
Then the doctor ran away and eventually returned with two other endocrinologists in tow, who all stood at the other end of the room and surveyed me like something interesting they'd found in a jar at the Hunterian Museum.**
They have been somewhat confused by the fact that my levels of various thyroid hormones have remained roughly the same since being on the lanreotide injections, despite the fact that you would expect them to drop.
Additionally, the MRI scan of my pituitary was a little tricky to interpret. Essentially, the pituitary gland is like a tiny upside-down lollipop just below your brain. The stick of the lollipop is called the infundibular stalk*** and it connects the pituitary gland to the hypothalamus. My original MRI pituitary scan showed a great big gobstopper lollipop with a dark patch of necrosis in the middle, where the tissue inside the tumour had died off a bit. To picture this, first imagine a lollipop with a liquid centre, and then imagine something a lot more disgusting. But my latest scan shows a rather more normal-sized lollipop which hasn't grown since my surgery (hurrah!). However, the stick of the lollipop is slightly bending to one side.
Given that there's limited space inside your head for these things to grow, a wonky pituitary stalk can indicate that the bulk of a tumour is pushing the rest of the pituitary gland to one side. So the area of pituitary gland on the left-hand side is now under suspicion. I have to say, looking at the scans was kind of awesome, because it's not like when people show you the ultrasound of their baby and you have to pretend you totally see what they're talking about. I actually could see what they were talking about.
But the problem with MRIs is that they can show you what's there, but not what it's doing. So although it looks like there's probably a bit of tumour left on one side of my pituitary gland and that may well be what's still causing my symptoms, it's still possible that it's not that bit at all. And it would be rubbish to have surgery, take that bit out and then discover it was actually healthy pituitary tissue.
So my doctors want me to have two combined PET/CT scans. PET (Positron Emission Tomography) scans are super colourful and pretty, but that's not the only reason they want me to have one (I hope).
| PET scan of the brain |
Basically, PET scans can show those areas of the pituitary that are most metabolically active. Inactive areas are dark. So the idea is that I will have one of these scans while not on any kind of medication, which should show the whole pituitary lit up like a christmas tree, and then have another scan after three months on a higher dose of lanreotide, which should suppress the hormone production in the TSHoma. Any areas that go from being bright blue on the first scan to being dark in the second scan are probably tumour. Then, if the tumour is in an easily-accessible area of my head, I might have surgery again. If it's somewhere tricky to reach, I'll probably just continue to have regular injections of lanreotide indefinitely.
So I'm not having any more lanreotide injections for six weeks, so that it's definitely completely out of my system. And in the meantime they want to have me come in overnight one for some research tests on my metabolism and things. Essentially the hospital are collecting patients with pituitary tumours that produce TSH and studying us, so I am now officially a guinea pig.
_______________________________________________
*How could you ever think such a thing?
**I'm joking, they were very nice.
***Or just the pituitary stalk, but you don't get to use a word like "infundibular" every day.
Monday, 30 April 2012
Characteristics of Thyrotropinoma
I found an article on a website which lists the characteristics of thyrotropinoma (a.k.a TSH-oma, a.k.a the kind of pituitary tumour I have, which secretes thyroid-stimulating hormone) as follows:
"Thyrotropin secretion by thyrotropinomas is characterized by increased pulse frequency, delayed diurnal rhythm, enhanced basal secretion, spikiness, and disorderliness."
I deeply resent this. In fact, I am a very orderly person.
"Thyrotropin secretion by thyrotropinomas is characterized by increased pulse frequency, delayed diurnal rhythm, enhanced basal secretion, spikiness, and disorderliness."
I deeply resent this. In fact, I am a very orderly person.
Thursday, 26 April 2012
Top Tips for People About to Have Pituitary Surgery
Before going into hospital for your transsphenoidal pituitary surgery, you will be anxious. You will have questions. Many of them will be answered on legitimate medical sites elsewhere on the internet, so instead of regurgitating the same old advice ("Don't sneeze after surgery or your brain will shoot out of your nose", "Warning: after they've drilled through your head, it may be a little sore"), I have decided I will go down a different route, and write down the more obscure things that I wish I'd known before heading into hospital.
Consequently, I present my top tips for people about to have pituitary surgery:
1. Shave your inside elbows.
"She's gone mad," I hear you cry. "She's raving. It was probably the brain surgery that did it."
In fact, this is an entirely logical step because of all the blood tests you'll undergo after your pituitary surgery; you're basically going to be a human pincushion for a couple of days as the doctors seek to keep a very close watch on various hormone levels. This means that the post-blood-test strip of tape and cotton wool that the phlebotomist sticks over your inside elbow is going to get ripped off repeatedly, and then stuck back on. And then ripped off again, along with much of your arm hair. After the sixth time this happens in one day, you'll be wishing you looked like this.
2. Drink enough.
If this seems obvious to you, then presumably you're a normal person who gets thirsty when you haven't drunk sufficient amounts of water to keep yourself hydrated. However, I am an odd sort of person and I only really get thirsty when it's hot or I've done exercise. If neither of those conditions have been met then I can go for hours and hours without drinking and not even notice; even back when I was a teeny child, my mum would tell me off for not drinking enough.
Compounded with the fact that I don't like water, this was slightly problematic in hospital. Because of the risk of pituitary surgery inducing diabetes insipidus, your fluid balance is monitored carefully and if you're not drinking enough to keep yourself hydrated, they will put you on a drip. This is rubbish. Therefore if you don't like water, keep a supply of tastier drinks at hand. And by "tastier drinks", I mean RIBENA.
3. Always eat the custard first.
Hospital food gets a bad rep. The food at my hospital was pretty tasty really, and there was a good selection. But for some obscure reason the dessert was often served before the main. If you waited for your main meal to rock up before eating, your custard would congeal disconcertingly by the time you got to it.
So remember: you've just had brain surgery. Screw societal norms regarding the "correct" order in which to eat sweet or savory comestibles!
4. Make your visitors play musical chairs.
Again, this may initially seem nonsensical. But I was fortunate enough to have a fair few visitors in hospital (thank you guys! <3), which was lovely. However, for the most part they sat in the same chair on the left-hand side of my bed, and consequently by the end of my stay in hospital I had done my neck in from continually turning my head to the left. It was pretty painful and entirely my own fault. Make them alternate sides.
5. Get wheeled out in a wheelchair.
Because a) you'll be feeling rubbish and won't want to walk, and b) it's fun!
6. Steroids + morphine = surprisingly fun.
After waking up from surgery, initially I felt rubbish. The nurse at hand quickly gave me some morphine. By the time I was properly awake, I was pain-free, wired, and weirdly delighted that the nurse had the same first name as my mum. They took me out of the post-surgical care room and up to the main neurosurgical ward, and about half an hour after I woke up I was already texting various members of my friends and family and talking nineteen to the dozen about how unusually chirpy I felt.
7. Play your "brain surgery" card.
I regret not doing this more, in retrospect. I have no doubt that there are hours of fun to be had in pretending not to recognise household objects, friends, family, political systems and/or branches of philosophy.
I remember speaking to one friend a few weeks after my brain surgery, and I mentioned that I was always forgetting where I'd left my books. She gave me a sorrowful look and whispered, "Is that because of the surgery?"
It was disappointing to have to confess to her that no, I have in fact always been that stupid.
8. Get a free pill slicer. They are awesome.
After pituitary surgery you'll be put on steroid replacement medication in case the neurosurgeon accidentally removed your body's ability to make its own steroid hormone when required. Said pills can be broken into different-sized chunks so you can take, for example, a whole dose in the morning, half a pill at lunch, and the other half in the early afternoon. When I left hospital, I obviously looked too pathetic even to break a tiny pill in two, because they provided me with a pill slicer. You put the pill in, shut the lid, and SHAZAM! A razorblade hidden inside will slice that bad boy in twain.
I managed to lose my pill slicer after a couple of months, and I still haven't quite got over it.
Consequently, I present my top tips for people about to have pituitary surgery:
1. Shave your inside elbows.
"She's gone mad," I hear you cry. "She's raving. It was probably the brain surgery that did it."
In fact, this is an entirely logical step because of all the blood tests you'll undergo after your pituitary surgery; you're basically going to be a human pincushion for a couple of days as the doctors seek to keep a very close watch on various hormone levels. This means that the post-blood-test strip of tape and cotton wool that the phlebotomist sticks over your inside elbow is going to get ripped off repeatedly, and then stuck back on. And then ripped off again, along with much of your arm hair. After the sixth time this happens in one day, you'll be wishing you looked like this.
2. Drink enough.
If this seems obvious to you, then presumably you're a normal person who gets thirsty when you haven't drunk sufficient amounts of water to keep yourself hydrated. However, I am an odd sort of person and I only really get thirsty when it's hot or I've done exercise. If neither of those conditions have been met then I can go for hours and hours without drinking and not even notice; even back when I was a teeny child, my mum would tell me off for not drinking enough.
Compounded with the fact that I don't like water, this was slightly problematic in hospital. Because of the risk of pituitary surgery inducing diabetes insipidus, your fluid balance is monitored carefully and if you're not drinking enough to keep yourself hydrated, they will put you on a drip. This is rubbish. Therefore if you don't like water, keep a supply of tastier drinks at hand. And by "tastier drinks", I mean RIBENA.
3. Always eat the custard first.
Hospital food gets a bad rep. The food at my hospital was pretty tasty really, and there was a good selection. But for some obscure reason the dessert was often served before the main. If you waited for your main meal to rock up before eating, your custard would congeal disconcertingly by the time you got to it.
So remember: you've just had brain surgery. Screw societal norms regarding the "correct" order in which to eat sweet or savory comestibles!
4. Make your visitors play musical chairs.
Again, this may initially seem nonsensical. But I was fortunate enough to have a fair few visitors in hospital (thank you guys! <3), which was lovely. However, for the most part they sat in the same chair on the left-hand side of my bed, and consequently by the end of my stay in hospital I had done my neck in from continually turning my head to the left. It was pretty painful and entirely my own fault. Make them alternate sides.
5. Get wheeled out in a wheelchair.
Because a) you'll be feeling rubbish and won't want to walk, and b) it's fun!
6. Steroids + morphine = surprisingly fun.
After waking up from surgery, initially I felt rubbish. The nurse at hand quickly gave me some morphine. By the time I was properly awake, I was pain-free, wired, and weirdly delighted that the nurse had the same first name as my mum. They took me out of the post-surgical care room and up to the main neurosurgical ward, and about half an hour after I woke up I was already texting various members of my friends and family and talking nineteen to the dozen about how unusually chirpy I felt.
7. Play your "brain surgery" card.
I regret not doing this more, in retrospect. I have no doubt that there are hours of fun to be had in pretending not to recognise household objects, friends, family, political systems and/or branches of philosophy.
I remember speaking to one friend a few weeks after my brain surgery, and I mentioned that I was always forgetting where I'd left my books. She gave me a sorrowful look and whispered, "Is that because of the surgery?"
It was disappointing to have to confess to her that no, I have in fact always been that stupid.
8. Get a free pill slicer. They are awesome.
After pituitary surgery you'll be put on steroid replacement medication in case the neurosurgeon accidentally removed your body's ability to make its own steroid hormone when required. Said pills can be broken into different-sized chunks so you can take, for example, a whole dose in the morning, half a pill at lunch, and the other half in the early afternoon. When I left hospital, I obviously looked too pathetic even to break a tiny pill in two, because they provided me with a pill slicer. You put the pill in, shut the lid, and SHAZAM! A razorblade hidden inside will slice that bad boy in twain.
I managed to lose my pill slicer after a couple of months, and I still haven't quite got over it.
Thursday, 12 April 2012
One Year Post Brain Surgery!
This is just a very quick post in case I don't have the time to write something more extensive today (quite possible, I am super busy!) to say - today is the one year anniversary of my transphennoidal pituitary surgery! A year ago right now, I was waking up in the hospital. At first it was pretty painful but I don't really remember that - I just remember being asked to rate the pain on a scale of 1-10 and spending several moments agonising (literally) about exactly what the range should constitute, then deciding on a five. Which was the right decision, because I got a whole bunch of morphine for my troubles. After that for the most part I didn't need much pain relief beyond paracetemol.
They wheeled me up to the ward after a while and I was outraged not to find my parents waiting for me, so I sent them a demanding text message insisting they come and see me (turns out they were not ever actually told that I had gone for surgery... that's another story) and was generally surprisingly perky for the rest of the evening thanks to a combination of steroids and morphine. Whoop! Also incredibly thirsty.
But anyhow that was a YEAR ago, which really is pretty hard to believe! My pituitary adenoma was significantly diminished after its encounter with my neurosurgeons... and now I'm waiting to find out how it looks one year on.
They wheeled me up to the ward after a while and I was outraged not to find my parents waiting for me, so I sent them a demanding text message insisting they come and see me (turns out they were not ever actually told that I had gone for surgery... that's another story) and was generally surprisingly perky for the rest of the evening thanks to a combination of steroids and morphine. Whoop! Also incredibly thirsty.
But anyhow that was a YEAR ago, which really is pretty hard to believe! My pituitary adenoma was significantly diminished after its encounter with my neurosurgeons... and now I'm waiting to find out how it looks one year on.
Friday, 23 March 2012
Double-Edged Sword
I've written a fair bit about acromegaly in the past - caused by a pituitary tumour secreting high levels of growth hormone, it can lead to gigantism if it occurs in childhood. But you may not have heard of pituitary dwarfism, which is effectively the opposite of acromegaly - although there's usually no tumour involved - in which the pituitary gland fails to secrete enough growth hormone. If a child with pituitary dwarfism is left untreated, this can lead to permanently stunted growth.
Recently the world's tallest man, Sultan Kosen, has been in the news; his growth, caused by a pituitary adenoma, has finally been brought under control after surgery and medical treatment. Even so, he stands over 8 feet tall. In contrast, Special Olympics athlete Mackenzie MacDonald who has also been in the news was successfully treated for her childhood pituitary dwarfism, attaining a height of 5'4".
Recently the world's tallest man, Sultan Kosen, has been in the news; his growth, caused by a pituitary adenoma, has finally been brought under control after surgery and medical treatment. Even so, he stands over 8 feet tall. In contrast, Special Olympics athlete Mackenzie MacDonald who has also been in the news was successfully treated for her childhood pituitary dwarfism, attaining a height of 5'4".
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