A Day in the Life of an Irregular Blogger

Aloha! It's been another age since I've written in here! My apologies. I thought I'd pop by to give you a quick update.

Way back on the 15th April I had an MRI scan at the hospital (so long ago that I had to look up the dates in my diary at work...). I didn't get the results until the 20th May, when I had an appointment with a very nice nurse in Neurosurgery. My lovely boyfriend came with me to the hospital and saw the scan images, so I guess now he is in the enviable position of having seen exactly what's going on inside his girlfriend's head!

The scans look pretty good - it's always hard to tell just from an MRI, but the surgeons were optimistic that they managed to remove the whole tumour, and there's nothing obviously wrong in the images. The trouble is that the pituitary gland is so tiny - about the size of your little fingernail - so even with the contrast injections, at best an MRI is only an indication of what's going on in there - blood tests are very important as well. But the surgeons are very happy with me, and as far as they're concerned, I don't have to have another MRI for a year. Hurrah!

On the 27th June I went to see the endocrine nurses for a synacthen test. This test evaluates how well the pituitary is producing adrenocorticotropic hormone (ACTH). This hormone is really crucial for your body, and because there's always a risk that surgery can damage the pituitary gland, patients who have transsphenoidal surgery are put on replacement steroid medication as a matter of course. The doctors will only let you come off the medication if a synacthen test shows your pituitary gland is now able to produce ACTH on demand.

I already had one of these tests back in March and my pituitary had a fairly good response, but not quite good enough to come off the medication totally. The endocrinologists halved my dose of hydrocortisone, but I'm still taking 5mg in the morning and 5mg at midday. I'm hoping that the results of my test last week will be good enough for me to come off the steroids totally. It would be in line with what happened after my last operation, when it took about six months before I was able to come off medication. Certainly immediately after the operation I was in need of the steroids - about a month after surgery, I forgot my 4 o'clock 5mg dose, and was a complete emotional wreck all evening until I remembered I hadn't taken it at about 7pm. I took it - and half an hour later I was already feeling immensely better. More recently I have forgotten to take my hydrocortisone on time once or twice and not had any ill effects at all, which hopefully is a good sign.

I don't know yet what date I'm due back at the hospital for my next proper follow-up with endocrinology. I had thought it would be the end of June, but apparently it's actually going to be the end of July, four months after my last clinic appointment. Then I should get the results of the synacthen test, and the other blood tests they did at the same time to check my thyroid levels.

I'm Still Here!

 Aloha! Long time no blog I know, profuse apologies all round. Partially I have been lazy, partially I have been working on other projects and partially I have been enjoying my recovery!

I went back to work around the beginning of March. I did a phased return, which I really recommend - the first couple of days back I felt pretty much exhausted by lunchtime, but by the end of my first week I was almost back to normal. So I've been back for two months now (how time flies!) and doing good.

I had a series of blood tests done in March by my endocrinologists and they came back looking good. My ACTH response wasn't quite back to normal, so I'm still taking hydrocortisone (albeit at a low dose), but my endocrinologists were optimistic that hopefully I'll be able to come off it in a few months. The same thing happened after my first surgery, so fingers crossed! The rest of my pituitary hormones are all fine - my TSH and free T3 and T4 came back the lowest they have ever been.

I'm back up to my pre-surgery level of fitness now too, and hopefully going to surpass it! I dance for 3 hours a week, swim for an hour, do lots of walking, the odd run, and yesterday I bought a bicycle so now I'll start doing some cycling too. I'm only taking propranolol very occassionally - I still get the odd bout of a fast resting heartrate, particularly after eating, but it's not often. I'm off to the doctors for an ECG to check that out tomorrow, although chances are it won't show anything and they'll need to do a 24-hour heart tape.

So all in all things are looking good so far. I've had an MRI scan now but I don't get the results til the 20th May when I go to meet with the neurosurgeon. Fingers crossed!

Schrödinger's MRI Scan (A Hallowe'en Special)

Some time ago, I received an appointment from the hospital for an MRI scan on the 31st October. I immediately - and diligently - phoned them up to ask whether or not this was a mistake. I had been due to have a scan after three continuous months on my current medication, and due to delays in getting funding for my lanreotide injections, I'd not had one for two months at that point. I was told not to cancel the appointment, and that I would be informed of whether or not to go.

I've reminded them about this twice since, and both times been informed that I almost certainly won't need to have the scan on the 31st - because it would be wildly pointless - but that I shouldn't cancel it, and it will be rearranged.

Well, the scan is next Wednesday (on Hallowe'en, no less!) and I've still heard bugger all. I don't know what the cost of an MRI scan is to the NHS, but I do know that the scanners at my local hospital can sometimes be booked up months in advance, and for me to be hanging on to an appointment I don't need, or to have a scan that won't be particularly useful to my doctors, is stupid.

I was going to attempt to call and remind them about this at lunchtime today, but I was hit by a sudden feeling of futility and hopelessness, so I composed a poem about it instead.

***

My MRI on Wednesday is sure to be a blast
I'll have more scans in future; I've had some in the past.
But this one will be special, for there's something I don't know -
Nobody has informed me whether or not I should go!

I can't say if they're expecting me to turn up on the day,
Or whether they'll be angry if instead I stay away.
I'm caught in a Catch-22, for I've no way of knowing
if I should go (or not) until I am already going.

It's Schrödinger's MRI scan, with my head inside the box
I'm quantumly entangled like a cat (or like a fox.
The fox is very prone to being used in paradoxes
For it's fairly cute and docile, and it wears such tiny sockses.)

My scan is not alive, yet its brain function has not ended
In terms of animation, it is currently suspended.
Like Dracula, there's still a chance it may rise from the grave;
EEG scans indicate disrupted delta waves.

Perhaps, for Hallowe'en, the MRI team has decided
that they're sick of being left out, and cruelly derided
(The other hospital staff tend to laugh and call them names
because, you see, they claim all MRI scans look the same).

And consequently they've now all come up with this little caper
(Which I find about as funny as a piece of plain white paper)
They won't click "confirm appointment", neither will they click "delete"
And when I show up for my scan, they'll all shout: "Trick or treat!"

Getting Aggressive

Last Thursday was my latest trip to hospital. My mum came with me, which was nice - she often tries to make it over for the more "important" hospital visits (and the ones where I would be bored out of my skull if I went alone, thankfully!). We got there in ok time, I registered at the reception and we grabbed a seat in the endocrine waiting room. Mum went and got me a coffee (she is a hero) and just as I was raising it to my lips I was called in for the weighing and blood pressure tests.

Weight: 57kg fully clothed and shoe-ed, so I've lost 2kg since the beginning of May and possibly even lost a little since the beginning of July, when I weighed 57kg with no shoes on. That's probably down to the hyperthyroidism. When I first started losing weight, it was because I was on treatment that made me not hyperthyroid anymore, and my appetite dropped massively. Then after my pituitary surgery I lost a bit more weight initially and then was fairly stable for a while. So the fact that it's going down again is now probably a bad thing and due to my crazy thyroid levels. It's strange - I never expected to be one of those people whose doctors want them to stop losing weight, haha!

Resting blood pressure: good; standing blood pressure: a bit low, but fairly standard for me whilst on beta blockers. Then I was finally allowed to return to my delicious coffee.

I actually saw four endocrinologists in total, which was a personal best for me. Although I don't know whether to count one as she didn't speak. I would refer to her as the Silent Endocrinologist, but as she didn't say anything I really have no reason to mention her again.

So first we sat down with Dr Nightcap (shh, I'm stuck for ideas on what to call him) and the Silent Endocrinologist (damnit!) and he went through the basics of symptoms etc. and asked how much I'd been told about what to expect from further treatment. Then Dr Olive and The Main Endocrinologist joined the party. I am so popular!

The short of it is, the tumour has grown and they are going to do more surgery. I had previously been told it had grown "slightly" and this word was repeated. I took this to mean "It has grown a tiny bit, such that a non-medical person like yourself would likely be unable to perceive it at first glance". Then I was shown the latest MRI of my head. It has grown what I would describe as "a slightly alarming amount". You can no longer see the separate pituitary stalk. It's still a fair bit smaller than it was before my original surgery, but at that point the tumour was cystic (ie. had a lot of liquid gunk in the middle, yum) and now it looks probably solid. The good news is that it is not yet encroaching on my optic nerve and it looks like it has remained fairly central so far. You really don't want it growing off to the sides because it becomes impossible to target with surgery if it starts growing around major blood vessels. However, because it has grown a fair bit, they started to bandy around the word "aggressive". I now have an aggressive benign tumour in my head, and if that's not an oxymoron then I don't know what is.*

The Main Endocrinologist described it as "a beautiful surgical target", which I am adding to my list of Weird Compliments I Have Received From The Medical Profession (one day I will publish a book).

The sad news is that it's looking much more likely I might have to have radiotherapy. Previously radiotherapy was mentioned as an option that they would try to avoid if possible. Now it is an option edging its way onto the table. I am super not keen. Obviously I am infinitely more keen on having radiotherapy than on having my head slowly fill up with tumour, but pituitary radiotherapy is really not fun. It basically usually ends up killing off quite a bit of healthy pituitary as well as the tumour, and in the years after treatment you will almost certainly end up needing a selection of fun hormone replacements, which you're then on for life. Plus, with girls (not sure about the boys?) there's a fairly high risk of infertility. I may do a more in-depth post on pituitary radiotherapy later.

So that was a bit sad. Essentially I am back on the lanreotide injections for three months, then surgery. Surgery is a little bit complicated by the fact that I have a persistant sinus/nose infection ever since my last operation, so I will need to be checked out and possibly treated by the Ear Nose Throat team before they let me have surgery. This may apparently involve sticking a camera up my nose. Obviously if that happens you will be the first to get the disgusting details, dear reader! At the moment, surgery may be in November-time, but obviously that depends on appointments getting booked and ENT giving me the all clear and things.

The good news is they're doing fancy endoscopic surgery on me this time which does have higher success rates. The surgery is still a possibility of cure, but success rates are quite a bit lower for a second surgery. And the fact that the tumour has clearly grown in quite a short time (it was stable at my previous scan in March) is not a good sign. Consequently they're already planning how to treat me if/when it does turn out that they don't manage to get the whole bloody thing out.

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*Pituitary tumours are only considered cancerous if they metastasize, which is extremely rare. The majority of pituitary tumours are very slow growing, however mine has grown back quickly so they are treating it as "aggressive". These tumours are also treated as aggressive if they invade the areas surrounding the pituitary fossa.

I Need More Surgery

I just had a phone call from the hospital and it's official: I'm going to be having more pituitary surgery. The results of the tests I had at the beginning of the month show that I'm still "thyrotoxic" as they call it (my thyroid hormone levels are too high) - which to be honest I could have told them myself, as I'm still having symptoms aplenty. The sad news though is that they think the pituitary tumour has grown since my previous MRI scan. My last scan was in March. For it to have noticeably grown in just three months is kind of worrying to me (and also makes me slightly more pissed off that they stopped my injections for four months when I was told it would be half that time - the tumour had been stable while I was on the injections...).

So, that sucks. I am reeeeeally not looking forward to more surgery. Last time I didn't know what to expect; this time I know exactly how many blood tests and needles and rubbish things will be involved, plus oh god when they take out the bandages from your nose! I believe it's slightly more risky the second time around, plus I'm going up against the same odds of ending up with diabetes inspidus/hypothyroidism/addisons disease/other pituitary fail.

I am also slightly concerned because I have had a slight sinus infection since last August thanks to the surgery and it just occurred to me that I don't know if they will even be able to operate unless they get rid of that first?

Here are the bright sides:
- Surgery at least carries with it the possibility of cure.
- I am marginally more in shape than I was last time around, so you never know - my crappy muscles might recover a little faster
- More time off work? (Admittedly, it's just time off to lie on the sofa complaining, but still)
- This time I will remember to ask about painkillers that I am not allergic to and am able to take.
- This time I will take photos in hospital and show them to YOU, dear reader.

So, here we go. Brain Surgery, Round 2!

Human Guinea Pig: Part 5 - Dinner at the Hospital

This is the fifth 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. Here are links to: part one, part two, part three and part four (I do go on).

Dinner at the Hospital

After a hurried trot back from the MRI department, I was dropped off at my room, ten minutes late for my dinner. The timing of this dinner was apparently important because it had been prepared just for me, and was apparently perfectly calibrated to contain exactly the right amount of calories for someone of my height and weight. I was allowed to eat the prepared meal only, nothing else, because they planned to monitor my metabolism and blood sugar levels in the morning and needed these to be unaffected by what I had eaten the night before.

I had barely had time to change out of my ridiculous scrubs and re-attach my Actiheart monitor when the night nurse's head appeared around the doorframe. "We're just heating your meal," she said, in a firm, no-nonsense voice. "You will be expected to eat all of it, you understand?"

And, with a stern look at me, she left. A few minutes later, she reappeared, tray in hand.

 Every dish had a label to show who it was for and when I should eat it, even to the extent that the milk for my evening (decaff) coffee had been measured out in advance, and I was not permitted any more. The main meal was, happily, spaghetti bolognese, one of my favourites.

But when I saw the dessert, my heart sank.

Close friends and family are aware that when it comes to desserts, I am usually more than enthusiastic in my appreciation of the culinary arts (unless it's cheesecake. Eurgh). However, I have a few basic rules. I don't eat jelly with sponge cake. I don't eat sponge cake with fruit.* And I don't eat fruit with jelly.

Here is a picture of the dessert:

In case you can't tell, it's strawberry jelly with tinned mandarin slices. NOOOOOO!

In fairness, it was partly my fault: the hospital did ask me whether I had any dietary requirements or dislikes, and I said no, because it would be strange and embarassing to have to explain my dessert law triad to a doctor. At least it wasn't cheesecake.

And so, I settled down to sup with good grace and managed to eat the entire thing. I did my utmost to separate the jelly from the mandarin segments wherever possible; where it was not possible, I adopted the approach to eating which has been popularised by the Burmese python, and gulped it down in one bite.

I don't know if the night nurse noticed my face fall when I saw the dessert, or whether she just thought I looked like an untrustworthy character, but she kept sticking her head around the door at unexpected moments while I was eating.

"Take your time," she said, smiling. "But you do have to eat it all."
"Ok, thanks," I replied.

My special tray!

Two minutes later, she popped up again. "You can take your time," she said. "Take as long as you want. But make sure you eat it all."

 And so on. It was very disconcerting. The constant visits created a weird kind of feedback loop where I found myself choking down the mouthfuls as quickly as possible in the hopes that she would finally stop telling me I could eat as slowly as I liked.

Eventually, I was done, and I had the evening to myself. I harassed my parents and boyfriend with text messages about jelly and fruit, read about the exploits of Mr Sherlock Holmes on my Kobo e-reader (which I LOVE), and flicked through TV channels. Eleven o'clock was lights-out and the terrifying night nurse came back again to confiscate my water and order me to pee in a jug overnight,** which was probably the moment I most felt like I was in prison.

Adding to this impression was the fact that my door had a small square window in it which opened onto the corridor and let an annoying amount of light in overnight, and the absurdly thin blanket on the bed. I often get chilly at night and hospitals are not cosy places, so I had brought my warmest hoody to wear in bed over my pyjamas, but I still woke up in the night absolutely freezing and had to ask for another blanket. This is extra annoying considering that hyperthyroidism is supposed to make you too hot, not too cold. In fact, I was given a questionaire about my symptoms, and one of the questions asked me to score my "heat intolerance" on a scale of 0-5, where 0 is no intolerance to heat and 5 is getting easily overheated. I wanted to add a -1 to the scale.

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*For those of you who really care about my pudding pickiness, I should note here that this rule only applies where the fruit makes the sponge cake all damp and hideous. I like fruit baked into cakes just fine. Fruit placed on top of a waterproof layer of icing is also acceptable. Trifle is the devil's pie.

**Not just for her own amusement; they did a 12 hour urine collection to monitor various hormone levels overnight.

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

MRIs can be quite claustrophobic, even if you're not normally bothered by confined spaces. I guess it is partly down to the fact that you don't have any control over it, partly down to the fact that your head is in a box and you're not allowed to move, and partly down to the weird and incredibly loud noises exploding into existence around you. However, if you do suffer from claustrophobia and you need to have an MRI, I can strongly recommend asking for a blanket. It makes the whole experience seem much more cosy. You can almost believe you're lying in bed on fireworks night. With your head in a box.

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!

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*The magazine was old... it wasn't a magazine for old people.

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.

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!

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p.s. - forgot to mention, I took my camera with me as promised so I actually finally have a few photos to show you!

Further Phonecall Funtimes With The Hospital

Another hilarious hospital moment: so on Friday I was heading to London for a friend's wedding (congratulations Mrs X!). The wedding wasn't until four, but I was doing the bride's hair and makeup and consequently heading down there nice and early. I felt almost certain that the hospital would attempt to phone me during the ceremony, because their phone call timing is always so hilariously dire. I am happy to report that they did not! Hurrah! Instead they called me just as I was trying to get onto a train, juggling three bags, one of which had to be kept upright at all times, and a cup of hot coffee.

Anyway, I made it to a seat without dropping the phone or spilling hot coffee all over my dress, and very proud I was too. The best part of the phone call was the beginning, which went like this:

ME: Hello?
ENDOCRINOLOGIST: Hiya, is this an OK time to talk?
ME: Yes, now is fine! (I am quite the liar)
ENDOCRINOLOGIST: SO I was just calling to let you know that I've confirmed the date for you to come in for your overnight testing on the 3rd to the 4th July-
ME: I'm sorry, did you say the 3rd to the 4th?
ENDOCRINOLOGIST: Yes, the 3rd to the 4th July, as we agreed on Monday?
ME: On Monday you told me it would be the 2nd to the 3rd...
ENDOCRINOLOGIST: Oh, did I? Sorry, it's actually the 3rd to the 4th. I'm always doing things like that, haha!

FACEPALM

Fortunately I could do the 3rd-4th as well, although I had to cancel plans to have dinner with a couple of my friends on the evening of the 3rd (sorry guys!). But I have to admit I was slightly taken aback at the fact that the endocrinologist didn't even inquire whether the new date suited me, despite the fact I would obviously have to re-clear it with work etc. She just assumed there would be no problems.

Perhaps at this point I should reiterate the fact that the hospital I'm treated at is in the main very good, with regards to treatment, explaining things, liaising across different departments, making sure I'm seen by multiple members of the endocrinology team etc. The nurses there are absolutely lovely, and when I had my surgery they really did look after me well. It's only in the administrative context that they fall down so abysmally, and I guess if it's a choice between a hospital providing very good treatment but being rubbish at arranging appointments, or vice versa, we all know which we'd prefer.

But anyway. The long and the short of it is that I will be going into hospital next Tuesday afternoon and staying in til around four o'clock on Wednesday. They've managed to arrange it so I will have my first PET scan on Wednesday so I won't have to come in again on a different day, which is good news. As for precisely what tests they are going to do, they've been kind of vague on the details but have said they'll send me leaflets on them; it's going to include a further pituitary MRI, some kind of body composition scan (I am now slightly afraid they'll tell me I'm composed of 90% fat), along with another bone density scan I think, and what I believe is technically referred to as a "shitload" of bloodtests.

I'm supposed to come off the beta blockers from the 31st and not take them at all until after my last set of blood tests on the 4th, which is going to SUCK. I have to travel through London on the 31st and I am really not looking forward to it now. I'm frequently finding I have a resting heartrate of about 120bpm at the moment and I've had to double my daily dose of beta blockers compared to what I was taking when I was on the lanreotide. Erk. I have expressed my annoyance on here previously at the fact that doctors really don't understand how rubbish tachycardia can make you feel; it just makes absolutely everything feel like really hard work. I'm also slightly suspicious that when I get there they might try and make me run on a treadmill or something (someone I work with had metabolic testing at the same hospital in the same facility and that's what they made her do) which without beta blockers would beeven less fun than usual!

So I'm going to try to remember to take my camera along with me to the hospital and take some pictures while I'm there, if they'll let me! Other people with medical type blogs always post pictures of their scans or having tests done or whatever and I never do, so I am determined to have a bash at it. If worst comes to worst I shall at least endeavour to get some exciting shots of my hospital bed...

*Censored* (A Rant)

Oh god, I hate hospital administration systems.

Two weeks ago, I went to the hospital. My doctors wanted to keep me off my medication for 6 weeks, despite the fact that this would worsen my symptoms, so that they could run some tests and do some scans while it was out of my system. They said they would arrange for one of their research people to call me and arrange the tests. I pointed out whilst I was standing right there with them that as I have exams and a holiday coming up, there would be some dates I couldn't do, but that I could write these dates down and hand them over immediately so as not to waste time.

No, they said, that's fine. I would get a telephone call in the next couple of days, no worries.

Two weeks later, no bloody telephone call, and I'm going on holiday for a week tomorrow. I don't have a number I can speak to any of them on directly, the best I can do is call one of the doctors' receptionist, who is only in for three mornings a week. So I called her yesterday morning and left a message pointing out that if they wanted to arrange these tests before I left, they would need to get their freaking act together.*

Today at lunchtime I managed to miss the receptionist returning my call. There were no apologies for the massive delay; she left a message saying there was no prospect of getting me booked in today and that I should call back on my return from holiday. There was also no explanation of how this went from being the hospital's responsibility to call me to being my responsibility to call the hospital.

Sadly, I am incapable of shouting swearwords at my phone loudly enough to make myself feel better.

It is so unbelievably frustrating that this seems to happen almost every time anything hospitacular has to be arranged. Oh, your surgery's postponed at the last minute. Oh, your surgery's now back on with less than 24 hours notice. Oh, your letter got lost in the mail. Oh, didn't I mention that you're going to be booked in for an overnight stay? Oh, your MRi appointment never got booked? Well there's no point in you sitting here in this neurosurgical aftercare appointment then! Bye!

This means that three weeks will have gone by before I get booked in for ANY of these arsemongering tests and scans. On my return from holiday, I have exams. Essentially, this "six week period off medication" just got extended to an "indefinite period until we can be bothered to get back to you, lol." They really have no clue how shitty it is to seesaw on and off taking this stuff. Every time I start/stop taking it, there's a bunch of side effects - it messes up my skin and appetite and stuff - on top of the symptoms I get anyway when I'm not on it (heart too fast, hair falling out, etc. etc).

In my now-lengthly experience, it seems that hospital doctors are completely clueless about the barrage of administration that patients have to maneuver through in order to ever actually see them. Once, a letter that was sent to me giving a time and date for an MRi scan was lost in the post. I knew I was expecting an appointment, so when I didn't get a letter, I called the endocrine department, the MRi department, the main hospital switchboard and even I think neurosurgery for good measure, to try to find out if an appointment had been booked. Everyone told me they had no idea, had no means of finding out, and no clue who I should speak to - except the MRI department, who told me that I definitely didn't have an MRi booked. About two months later, the letter eventually turned up, by which time I'd obviously missed it. At my next appointment with my endocrinologist, he actually attempted to give me a telling off for missing an appointment, and then clearly refused to believe me when I explained what happened.

Well, this has been a massive rant. I do feel slightly better. But I am still pissed off.

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*Except obviously I was politer than that.

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).

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.

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*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.

The Mysterious MRIs

So last night I headed back to the hospital for an MRI scan. As my appointment was at 7pm at night, I was unimpressed - not only because I didn't particularly want to spend my evening at the hospital, but also because I feared that if delays accumulated during the day, there would be an epic backlog of people waiting to be scanned.  Happily, my fears proved to be little more than paranoid ravings. Firstly my good friend Havana, who is a medical student, stayed late at the hospital to meet me and cooked a delicious chilli for us to share. And secondly, the entire MRI department was eerily deserted and I was ushered straight through for my scan.

Locating the department was the first problem, even though I have been there once before. Fortunately the signage was fairly good - although I was amused to discover that, despite having been a student at the hospital for a couple of years, Havana hadn't realised that the signs referred to the MRI department and not a mysterious organisation known only by the acronym M.R.I.S.

As we went along I realised that I had unwittingly committed a terrible libel against the hospital on this blog by accusing them in a previous post of keeping their MRI scanning service tucked away in a terrifying basement full of doors with signs saying things like "DO NOT ENTER: DANGER OF DEATH" and "COWER NOW, BRIEF MORTALS". This is not in fact the case. The MRI department is located in a pleasant and airy wing on the ground floor. It's actually the bone density unit that's in the terrifying basement.

But you can see how I might get confused; in the past two years I've been to quite a startling variety of different departments at the hospital, including:

Accident & Emergency (Good crisps in the vending machine)
Bone Density Unit (Terrifying basement)
Cardiology (I was the youngest patient by about half a century)
Endocrinology (TVs in the waiting area are always playing The Jeremy Kyle Show)
MRI Dept. (Easily confused with Bone Density Unit)
MRI/CT Dept. (Never actually had my CT scan in the end, so it was more of a day trip)
Neurosurgery (Why do they assume everyone having brain surgery wants to read Country Life?)
Opthalmology (Seething with human life; not enough seating)
Phlebotomy (Offer you tea if you nearly pass out)

So you can see how I get confused. Anyway: I was called in, took off all my metal and bundled it into a locker, then had to answer a set of questions designed to flag up any random bits of metal that might feasibly in my body. Almost a year after my operation, it still feels weird that the answer to the question "Have you had any form of brain or head surgery" is actually now "yes". I signed the consent form indicating that I'd not lied about my non-bionic status, and we went in.

I went in, took my shoes off and realised I'd made a terrible mistake. I was wearing slightly aged socks with holes in them.* Ladies and gentlemen, when you are going for an MRI scan it is imperative to wear good socks. They are the only part of you that is visible outside the machine. When the nurse comes in to give you an injection of contrast dye, they will judge you not on the content of your character, but by the colour of your socks. So wear nice ones.

Anyhow, I put in my earplugs, lay on the table and had the padding put in the MRI helmet and rolled backwards into the machine. I didn't feel at all claustrophobic this time, and I found it a lot easier to lie still, probably because I now have (hopefully) much lower levels of thyroid hormone sloshing around my body; previously I couldn't even keep my hands steady normally and was ultra jumpy, so expecting me to be able to lie completely still while sudden loud noises went off all around me was a vain hope indeed. That's probably one of the reasons that the scan went so quickly, it was over in about twenty minutes or even less.

The injection of the contrast dye is really weird, it feels really cold as it's going into your arm, which is pretty freaky - add to that the fact that your head is trapped in a cage while they're giving you the inkection and you're worried that the nurse is judging your poor choice of socks, and it's a disconcerting experience.

One of the things that occurred to me in there was - what the hell does the back of an MRI machine look like? I've had three scans and seen plenty of classic hospital drama, but I only know what they look like from the front. For all I know, behind each machine is a large gnome smashing bits of metal together to make the noises.

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*Although admittedly pretty much all my socks have holes in them.

What Should I Blog About?

This is a question I frequently ask myself. Recently it occurred to me to use the Google AdWords Keywords search - which shows you the number of searches for particular keywords globally - to see how many searches are made every month for the different topics I write about on this blog. As you hopefully have noticed, I blog chiefly about my experiences with my rare tumour of the pituitary gland, which secretes too much thyroid stimulating hormone (TSH). This kind of pituitary adenoma is sometimes referred to as a thyrotropinoma, or a TSH-oma. But they're very rare, so I wondered - how many people are even looking for information about this online?

It's not looking good:

Thyrotropinoma: 28 searches per month.
TSH-oma: 480 searches per month.
TSH secreting pituitary adenoma: 170 searches per month.
Grand Total: 678 searches per month across the entire world.

So although no-one could deny that this blog has certainly found a niche in the market, it looks like my target audience is pretty minute. Hearteningly, searches for "pituitary adenoma" are much higher, so that may help. Plus, Blogger gives you a breakdown of the search terms that people used to find your blog, so you can see what searches are the most popular. It's an eclectic bunch; my favourites from the past week include "extreme fat men", "barber with no legs" and "can you get nigeri fowleri from picking your nose".

So in future I'm afraid those are the topics I'll be focusing on.

Anyway, this evening I'm off to the hospital for my latest MRI scan! Note that I use "latest" both in the sense of "most recent" and "overdue", as I was supposed to originally have it in February and they failed to book me in. Again. Nevermind! There's nothing I enjoy more than going for an MRI at 7pm at night. I didn't even know hospitals had outpatient appointments for scans that late in the evening!

Anyway, I shall be reporting back tomorrow...

IMFW: Out Of Gas

Only a brief Interesting Medical Fact of the Week this time - and indeed it's only tenuously medical. Did you know that MRI scanners use helium to run? So does the Large Hadron Collider. Liquid helium is used to cool the super-conducting magnets sitting inside these machines and working hard at being magnetic.

Now I'm the first to acknowledge that's not a particularly interesting fact. But it leads on to the actual interesting fact, which is that the world is running out of helium; the US Government decided to sell off its federal helium reserve in the 1990s, which lead to extremely low helium prices. And that could have concerning consequences for medical imaging in the future. This would not be good; MRI scans are great because they don't use ionizing radiation, and they give good images of soft tissues compared with CT scans.

And as a bonus fact; MRI scanning rooms are usually equipped with oxygen monitors in case of unintentional shutdown, in which the liquid helium inside the scanner would boil. If it's not able to escape through a vent, the helium gas could escape into the scanning room and suffocate everyone. Whoop whoop!

Travel to Mars, deform your pituitary gland...

Todays papers have been awash with the news that astronauts may suffer side effects from spending long periods of time in space; specifically, their eyesight may be damaged due to effects which appear similar to intracranial hypertension; i.e. increased pressure in the head. Their eyeballs have literally changed shape, making them more longsighted - which, in the case of those astronauts who started off with short sight, has actually improved their vision.

In pituitary-relevant news (which this blog is always excited about), doctors examined 27 astronauts who each had a cumulative total of at least 30 days in space, and of those 27, three were found to have slightly deformed pituitary glands. I have struggled to find any more details on exactly how their pituitaries were "slightly deformed"; I presume that their pituitary glands may have become somewhat flattened along the interior walls of the sella turcica cavity. And although that sounds suspiciously precise coming from me, I promise I'm not making shit up; that's what happens in primary empty sella syndrome, which can be a sign of intracranial hypertension.

Shit, where'd I leave my glasses?

The Silence of the Gland: Diagnosed

It's been a while since I wrote the last post about my previous attempts at diagnosis, so I decided to man up and get the heck on with it. Yeah! USA! USA!*

Obviously my tales of pituitary surgery will be the most enthralling/gross, but who knows, maybe the events leading up to surgery will also be of interest to someone. If worst comes to the worst and I develop dementia in my old age, I guess I can read all about my exciting earlier life!

LAST TIME ON PITUITARY ADEMOANER:

It had been determined that there was nothing wrong with my heart. My cardiologist ordered several blood tests and referred me to endocrinology.

This is where it gets dull and technical.

What I didn't know was that, up until that point, although I showed symptoms of hyperthyroidism, my doctors had only ordered blood tests which looked at my levels of thyroid-stimulating hormone, rather than the thyroid hormones themselves. TSH is produced by the pituitary, then it travels through the blood and spurs the thyroid gland to produce thyroid hormones. Usually, when hyperthyroidism is caused by a problem with the thyroid gland, you would expect the pituitary gland to produce only very low level of thyroid-stimulating hormone (TSH), as the body is trying to suppress the overproduction of thyroid hormones. However, my TSH tests had always come back within the "normal range", so it was assumed that hyperthyroidism was not the problem.

Then a letter dropped through my door from one of the consultant endocrinologists at the hospital. It informed me that my blood test results were "very unusual", and that they suspected I may have a rare condition called resistance to thyroid hormone (RTH). I was called into the hospital for further tests.

At the hospital, I met the consultant who had written the letter. To this day, he possesses one of the finest moustaches I have ever seen. Whilst I sat wondering what kind of scissors he used to trim it so neatly across his upper lip, he informed me that resistance to thyroid hormone is a rare genetic condition, in which most or all of the body's tissues do not respond normally to thyroid hormone. In some people, there are few symptoms as the whole body is equally resistant to the hormone, resulting in high levels of thyroid hormone in the blood but few issues associated with this; in others, the pituitary is more resistant than other tissues to thyroid hormone, leading to some symptoms of hyperthyroidism.

My blood tests showed that I had normal levels of thyroid stimulating hormone, but high levels of thyroid hormones T3 and T4 in my blood - indicating that my pituitary was not responding normally to the high thyroid levels. I was told that the only other possibility was that I might have a tumour on my pituitary which was producing TSH, a.k.a. a TSH-oma, but that this was even more absurdly rare than resistance to thyroid hormone and it was much more likely to be RTH.

I had more complex blood tests at the hospital, and they even took DNA samples to look for the particular mutation. Everything came back negative. The moustachioed doctor's main area of interest was resistance to thyroid hormone, so he passed my case to a colleague specialising in pituitary issues; it was pretty much certain by then that I had a pituitary adenoma, they just needed an MRI to show the tumour. Which they did - and I've already written a post about the MRI, which you can read here.

I don't really remember the phone call from my endocrinologist informing me that I did indeed have a pituitary macroadenoma, measuring 23mm by 19mm by some other measurement which I've forgotten. By that point I had had a chance to get used to the idea that I had a pituitary tumour, so the phone call was really just official confirmation with additional details. But I do remember calling my mum to tell her the news; I walked home from work the long way, through one of the big parks nearby.

After that it was a bit of a whirl of activity. I got the news just before Christmas 2010 and as soon as I arrived back in town after New Year's, I had to arrange to start lanreotide injections to reduce the amount of TSH the tumour was producing. They wanted me to have injections for three months, then a transsphenoidal hypophysectomy (that's pituitary surgery to you and me) immediately afterwards. I had to spend a day in hospital so that they could check that my pituitary was still producing other hormones at a normal level and wasn't about to collapse due to a lack of adrenocorticotropic hormone or something. It all passed in a bit of a blur; the idea of surgery was definitely what most occupied my mind in the intervening months...

UPDATE: You can click here to read about my experience having an MRI scan, or click here to go back and read about my earlier experiences trying to get a diagnosis.
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*Or something...

My MRI Experience: Stuck In A Moment. And Also A Tube.

Today I thought I'd continue my story of diagnosis and treatment, admittedly with a slight gap in continuity from my last post, by talking about the first MRI (Magnetic Resonance Imaging) scan I had. Brain MRI scans are pretty cool; it seems very weird to be able to look at a picture of the internal apparatus with which you are looking at the picture of the internal apparatus that you're using to - well, you know what I mean. Brain MRIs get recursive fast!

Around this time last year, having had my introduction to my local endocrinology department, blood tests had decreed that I did not suffer from Resistance to Thyroid Hormone and therefore the doctors knew that I almost certainly had a pituitary adenoma producing Thyroid Stimulating Hormone (TSH-oma).

Endocrinologists tend to leave off MRI scanning of the pituitary gland when diagnosing these conditions until they've ruled out all other options. This isn't a Daily Mail-worthy example of NHS cutbacks; it's because small, harmless pituitary tumours are quite common. Finding one on an MRI scan might lead doctors to wrongly diagnose a pituitary condition like TSH-oma or Cushing's disease, when in fact the tumor is not what's causing the problem.*

I knew that things must be reasonably serious when my endocrinologists allowed me to jump the queue for MRIs at the hospital. In fact, I jumped it so completely that the NHS paid for me to have my MRI done immediately at a nearby private hospital, because there were no scanners available at the NHS hospital for a few weeks. It was slightly disconcerting, not just for the speed at which it all happened, but also because I had to travel to the mystery hospital on my own, by bus, to the middle of the countryside. The bus driver dropped me off with another girl who was fortunately also headed for the private hospital, and we were left in a random village with no signposts or map. Eventually we got there, and I heartily thanked the paranoia which had led me to leave home an hour earlier than I needed to.

Before my MRI, I didn't know much about them, apart from the fact that, as the scans work through big old magnets - hence "magnetic resonance imaging" - you have to remove all metal from your body or risk it moving around in the magnetic field; consequently, no pacemakers allowed. I wanted to know what to expect, so I scoured the NHS website and interrogated family members who had already had one. They said: you take off your watch, you lie in a tube, it's loud, you have to stay still, the technician shouts "stay still, damn you!", you leave.

NOW JUST HOLD YOUR HORSES.

An account such as the one above leaves out some crucial information for folk like me. For one thing, I didn't realise that, as it was my general cranial area being scanned, they would trap my head in a box stuffed with cushions to prevent it from wiggling. Then, head duly caged, you slowly roll backwards into the MRI scanner. Anyone who is claustrophobic would not be a fan, although they gave me a panic button which I could beep if I needed rescuing.

In fairness, the staff know that this is a freaky experience and repeatedly asked "Are you ok?". Towards the end of the scan, I also realised that the machine had a reassuring mirror placed just above my eyes, which means that patients can see the MRI technicians at work through a window at the back of the room. Or at least, patients who aren't stupidly and entirely blind without their glasses, like me. I am wildly shortsighted and consequently, even once I had realised that it was a mirror, and even though it was really pretty close to my face, all I could see was pinkish blurs.

The radiography folk gave me some sexy earplugs to wear, to block out the noise of the MRI scanner going mental with magnets. Unfortunately, these kept falling out and, because my head was wedged in with cushions, there was no way of putting them back in. MRI scanners really are incredibly loud, and it's not just the loudness that's the issue - the noises they make are weird and erratic, much like a young Kate Bush. When it all goes quiet, you find yourself tensing in anticipation of the next staccato burst of noise, and when it suddenly starts shrieking in your ears it's pretty tricky not to jump out of your skin, especially if you're pumped up with thyroid hormone and thus pretty jumpy anyway.

The technicians do not like this.

Partway through (the MRI took about 40 minutes, I think) I was pulled out of the machine. My heart leapt - time goes a bit screwy when you're in a weird screaming machine - perhaps it was finished? But no, they just wanted to inject contrast dye into my arm and bung me back in.

I whiled away the time by trying to remember and recite poems in my head. I did "The Jabberwocky" a couple of times, the prologue to Romeo and Juliet, my favourite speech from Macbeth, a couple of poems and odd verses from Siegfried Sassoon, and pretty much anything else I could remember. I was very bored. Pro-tip: learn some new poetry before having an MRI and then take advantage of the time to test your memory.

Anyhow, I realise I may have made my MRI scan sound like a horrific experience** but actually it was totally fine, and I much preferred it to having endless blood tests at the hospital. I admit I was irrationally afraid that there would be a previously unknown bit of metal embedded somewhere in my body that would rip out in a bloody mess.

Fortunately, this did not occur.

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*Such tumours are known as "incidentalomas".

**Or I may have just made myself sound like a massive whinger...