Six Months post surgery

It's been over six months now since my last bout of brain surgery. Time has certainly flown! The first two months after surgery are pretty weird really - on the one hand, at the time everything seems to go very slowly because a) doing minor things like making a cup of tea are a huge effort, and b) you get pretty bored sitting around but don't have the energy to actually do anything. But in retrospect, time seems to have sped by, because the days of recovery just turn into a vague blur of teacups and low-quality daytime TV.

So how am I doing? I haven't actually really taken the time to sit down and address that question in a blog post for quite a while. This is, happily, probably because the answer is: pretty good! Everyone who knows me is now bored of me going on and on about how much muscle I have put on in the last six months - not least because, as far as outward appearances are concerned, I have not visibly morphed into Arnold(ina) Schwartzenegger. For which I am rightly grateful.

But for years, the high levels of thyroid hormone rushing around my system have been subtly damaging my muscles and impairing my body's ability to produce new muscle. When I had a body density scan last July, the results freaked me out a little - I had a high percentage of body fat - but my endocrinologist explained this was probably due to unusually low muscle rather than high levels of fat. Since recovering from surgery, though, I have gone back to doing the same level of exercise I had been doing previously - several hours of dancing, lots of walking, and I've now started swimming and the odd cycle ride - but the difference is remarkable, because I'm finally actually seeing results from it. Things are becoming noticeably easier than they were even before I was diagnosed. I bought a new bicycle a few weeks ago and then went on a bike ride with my boyfriend, and actually got a bit teary-eyed by the end, because we'd cycled for around an hour and finished with an uphill stretch and I felt.... Totally fine. Even back in my first year of university, three years before I was actually diagnosed, I would have found that quite a push. I always blamed myself and assumed I was just really unfit but it did seem unfair that even when I played badminton regularly, walked lots and cycled, I always seemed to find exercise much harder than everyone else. Now, looking back, I finally know why.

Other positive things include an improvement with my hair - if you've read my blog before, you might remember that my hair has been falling out on and off since I was about 17 - the first symptom of my pituitary tumour. It has definitely improved since surgery. It's quite normal for your hair to fall out a bit for a couple of weeks about three months after surgery, which did happen, but overall I have noticed an improvement. It's falling out less when I wash my hair, and I have lots of short new hairs growing around my hairline (which actually just looks like a hilarious fluffy mess, but I do not care). It's not entirely linear progress - about a week ago I had quite a lot of hair come out in the shower - but it is progress. Of course, the trouble with hair is that it grows slowly, so even if the good progress continues it would still be quite a long time before I see my hair back to normal - and I guess it's probably unlikely it will ever get back to how it was before. I haven't been to a hairdressers in years because I just hate having the focus on my hair, and I've worn a hairband every day since midway through my third year at university (now three years ago - wow!) to hide just how thin and patchy it is. It would be really nice if I could feel confident to go out with my hair down again.

In other news, my heart still goes a little fast now and then but an ECG scan I had a month or two back didn't show anything strange. I'm supposed to have been referred for a 24 hour heart tape, but nothing seems to have come of it - I need to contact my GP's again I guess.

I'm resigned to the fact that my nose and sinuses are never going to be the same after two pituitary surgeries via the nasal cavities, but there you go! I take a fluticasone steroid nose spray every day which helps to minimise the irritation. Having started swimming, I've noticed that my nose and sinuses become hugely irritated by the chlorine and if I don't use my sinus rinse after swimming, I wake up the next morning sounding incredibly nasal. I love singing and occasionally if my nose is really irritated it does affect my voice, but for the most part the fluticasone spray seems to work.

So there you go! Six months down the line, overall I'm probably feeling the best I have in a very long time, albeit with some minor niggles. Fingers crossed the good progress continues.

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.


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*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.

Hypoglycaemia time!

Had my first bout of post-lanreotide hypoglycaemia today. It's silly, you'd really think I would be used to handling it by now but it still catches me unawares now and again. Fortunately I had a delicious and nutritious dried fruit bar with me to help out, although it's not quite as good as Starburst. Mmm, Starburst.*

In other news, since having my Somatuline Autogel injection last wednesday I have been feeling rather better; I've been able to take fewer beta blockers because my heartrate has been a little slower, which has been reeeally nice - and also slightly surprising, because my heart is usually extremely slow to react to hormone changes, as far as I can tell. Plus it has been noticeably easier to go to sleep and to get up in the mornings which oh my goodness is seriously appreciated.

Also I was reading a newspaper article about the Olympics and I got a little teary-eyed, so I guess the "overemotional" aspect of these injections has also jumped in to play. People who know me in real life, you have been warned! Don't show me pictures of sad animals or I might drown you in my tears.
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* No, I'm not sponsored by Starburst. I'm just hoping if I mention them enough they'll take pity on me and send me some free Starburst.
Mmm, Starburst.

Human Guinea Pig: Part 3 - Actiheart Monitor & Step Test

This is the third 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, and the second part here.

Actiheart Monitor & Step Test

Once my body composition scan was finished, there was a certain amount of fretting that I would be late for my MRI scan appointment, so I was immediately whisked off to have my step test and Actiheart monitor fitted. This meant I was still wearing giant scrubs and no bra when I was supposed to be doing mildly athletic deeds, which proved somewhat inconvenient.

The Actiheart monitor is a teeeny tiny heart monitor which attaches to your chest by means of two sticky pads coated in glue so vicious it's almost impossible to wash off without taking the top layer of skin off too. I was informed I would be wearing it until midday Friday (I had not had any kind of advanced warning about that!) and that they wanted to carry out a step test to calibrate it. Essentially, while standing in a room full of cycling machines and a giant treadmill, you have to spend eight minutes stepping alternately onto and off of a purple plastic step, in time with a computerised voice which says "Up. Up. Down. Down." and gradually gets faster. The Actiheart records your heartrate as you do so, and then this is compared to the recording of your heart over the next few days, and used to gauge your activity level against your heartrate.

It's so tiny!

This explanation seemed pretty bizarre to me, because they were recording my exercising heartrate while I was off medication and therefore had an unusually fast heartrate, and then using this to calibrate the results of the heart monitor recording my heartrate when I was back on the medication. I have not yet had a satisfactory explanation of why this isn't stupid, but I live in hope.

Anyway. The computerised voice started up, and after only a minute or so began to take on a strangely hypnotic quality as I stepped endlessly up and down. By 5 minutes 30 seconds, the voice saying "Up. Up." started to sound more like an evil "Ha. Ha." and I became convinced the computer was laughing at me. The whole time, I had to hold up the trouser legs of my giant scrubs because they were too long as well as too wide, and I was concerned I would trip and fall on my (apparently worryingly fat) arse. Pro tip for the creators of Actiheart: I have to say that the whole experience would be vastly improved if you set the "Up. Up. Down. Down." man's voice to trance music.

Having just been told that I was 36% lard, I became quite concerned that I must be hideously unfit and would utterly disgrace myself by being unable to complete the step test, but in fact it was totally fine and even when he got quite fast at the end I was still happilly stepping away.

There was no printout of results to take away with me; I have to wait until the five-day recording has been analysed and then I should get some feedback through the post. I can't believe quite how small and awesome it is, compared to the 24-hour heart monitors which I've had to wear previously, which have invariably been vast, bulky and inconvenient.

My experience of the Actiheart Monitor and Step Test:

Hassle: 5/5
Fun: 3/5
Weirdness: 4/5
Results: 2/5
Total score: 14/20

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).

My charming room

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.

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.

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...

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!

Progress!

I finally had a phone call from the hospital on Monday. I was offered a timeslot for my overnight stay and all the various tests they want to do on the 2nd-3rd of July. Alas, they can't do the PET scan on that day because the tracer they use comes in batches sufficient for two people, so they have to match you up with someone else who needs the same scan before they do it. So we're looking at doing the PET scan on the 10th July instead.

Good news!

It was a slightly disconcerting phone call; the endocrinologist asked me if I could confirm that the dates would suit me on the spot, and I said that I was pretty sure they would be fine but that I would need to check it out with work before I could be 100% certain. This seemed to genuinely confuse her. Equally strange was when she asked me if I was on any medication; I replied that I'm on propranolol, a beta blocker. She said that it could interfere with the tests and I would have to stop taking it for three days; so I said that although I was willing to give it a go, I would probably find it quite difficult to not take any for three days. This really baffled her - she asked me what I was taking it for. I said tachycardia (fast heartbeat) - but I'm pretty sure if I had said that I was taking it to keep the little green men out of my ears, she couldn't have found that more peculiar. It was strange, because this was something I had already discussed with the endocrinologist who originally asked me to have these tests - and he said that if I found it difficult to get by without it then they'd just not do some of the tests.

Ironically, my heart tends to operate on a bit of a timelag and takes a while to show any effect from my thyroid levels either increasing or decreasing, and it has only started to really go a lot faster in the last two weeks or so - which means that if they'd just organised the damn tests when they said they would, I might have been able to cautiously get by. However, I will be travelling through London on the 1st July with heavy bags and that is stressful enough even when your resting heartrate's not 120bpm.

Anyway, the long and the short of it is that she said that these dates "still need to be confirmed" with the clinical research facility place where I will be going (how exciting) and that she would call me back and let me know when they're definite and also tell me more about what exact tests they will be doing. That was on Monday. Today is Thursday. I am really hoping that doesn't mean there is a problem with the dates.

Quick Update

Hello! Here is another short post - I know, I know, I'm a reprobate. Obviously what the internet really needs is another one of my long rambly posts about injections and hand dryers. But the internet will have to wait.

So as I hinted previously, I was sick last Tuesday, having managed to pick up some kind of stomach bug that just made me throw up all the time. Any time I got out of bed, I threw up. So I made the sensible decision to stay there for the day. Admittedly, since childhood I have been notoriously prone to vomiting at the least provocation - car journeys, overexcitement, eating too many of those sweets shaped like flying saucers with sherbet in the middle. When I was about twelve, I went through a phase that lasted a couple of years where I just threw up every time I stayed around a friend's house. There was no apparent cause (I don't know if my parents thought I was just drinking  excessive quantities of alcopops, but in honesty I wasn't). Eventually I grew out of it. But even for me, I think that being sick seven times in eleven hours is some kind of record. I actually managed to pull a muscle in my stomach slightly from it. Nice.

Oh by the way, heads up - if you're grossed out by talk of me being sick, you probably shouldn't have read that last paragraph. Just a warning.

Anyway, the point is that although I was a bit pathetic for a few days given that I hadn't been able to eat or drink on Tuesday, I am now fine! Raring to go, in fact. Except obviously I have to catch up on all the work I didn't get done, and more importantly having given up chocolate for Easter I now have a whole lot of catching up to do on that front as well.

I've not yet heard from the hospital regarding my latest set of blood tests or the MRI I had, but my next appointment with my endocrinologist (well, in theory it's with him. In practice, past experience tells me it could be literally any endocrinologist) is on the 3rd of May so I'm assuming I'll get everything then.

Interestingly, I've realised that now I'm back on the lanreotide injections, which have slowed my heart down again now - there's a bit of a time lag, but after two months' worth of injections it has slowed down significantly even without medication - my heartrate has become an accurate predictor of me getting ill. It's happened before with colds that my heartrate started to go up noticeably about a day or so before I felt the symptoms, and again with this bug I had last week. So next time instead of just being annoyed when my heartrate rises for no apparent reason, I shall run around telling people that I'm psychic and I foresee that I will come down with a cold in the immediate future.... Sweet!

The Wonderful Thing About Hormones, Is - SHUT THE HELL UP I HATE YOU

Now, as you may or may not have noticed, I am of the female persuasion. And one of the irritating things about this is that, when you get annoyed, no matter how legitimate your grievance, there are a few gentlemen dotted about the place who will always respond with "LOL IT MUST BE HER TIME OF THE MONTH HAHA WOMEN EH AND THEIR MYSTERIOUS HORMONAL PROBLEMS CAN'T LIVE WITH EM CAN'T KEEP EM ON A CONTINUOUS DIAZEPAM IV TO CORRECT THEIR CRAZY LADY ISSUES".

The trouble with this reaction is not just that it is stupid, but also that there is no way of responding to it that does not justify the accusation in the minds of the accusers. If you remain silent, it implies that you agree. If you punch them in the face, this is taken as further evidence of "hormonal imbalance", when in fact it is self-evidently the correct course of action.

But anyway, my experiences over the last year or so of undergoing treatment for my pituitary macroadenoma have certainly made me appreciate The Power of Hormones. And that's what we're going to learn about today.

So what are hormones? Obviously, as we all kind of slightly know, they're like chemically things that sort of slosh around your body, and if they get imbalanced then you go mental and start shouting at people and probably have a hot flush.

On closer examination, this sounds suspiciously like the theory of the four humours, so I turned to Wikipedia for a delightfully un-technical definition: "A hormone is a chemical released by a cell or gland in one part of the body that send out messages which affect cells in other parts of the organism… In essence, it is a chemical messenger that transports a signal from one cell to another."

The pituitary gland is a little gland at the base of the brain, and it sits around all day secreting nine different types of hormone which help to regulate growth, metabolism, water balance, lactation, aspects of preganancy and childbirth, body temperature, blood pressure and more. Given the complex feedback mechanisms required to keep all these hormones in balance, it's easy to see that when you develop a pituitary adenoma which secretes hormone(s), it throws everything completely out of whack.

Pituitary adenomas may secrete growth hormone (acromegaly), adrenocorticotropic hormone (Cushing's disease), prolactin (prolactinoma), or as in my case thyroid-stimulating hormone (TSH-oma). But then it gets complicated, because each hormone may interact with and affect the levels of other hormones as well. So, for example, in my case my body was producing too much thyroid-stimulating hormone, which caused my body to produce too much thyroid hormone, which had a knock-on effect on other hormones including prolactin and SHBG (technically not a hormone itself but a glycoprotein which affects the levels of other hormones in the body). It's basically like your body has spent ages laying out a complex pattern of dominoes on the floor, in which one starter domino needs to be flicked for them all to neatly fall over, and then some buffon comes tramping in wearing giant boots and stomps right in the middle of them. Lots of the dominoes fall over, some don't, and it's a bloody nightmare trying to set it all up again.

So, this time last year, my hormones were completely messed up and I was experiencing all kinds of crazy symptoms; rapid heartrate, hair falling out, massive appetite etc etc. And then I started treatment with lanreotide injections - the same injections that I'm having at the moment - and started to see an improvement in my TSH levels, which continued for several months and has only just got worse again (damnit!).

I already knew about The Power of Hormones. When your heart's going at 140bpm it's hard to ignore. But I hadn't really been prepared for the fact that when I began treatment, my changing hormone levels would affect me in more ways than simply improving my symptoms. The same thing has happened again in the past week or so since having my first injection. The first thing to arrive, just like last year, was the Crazy Appetite Swings. On Sunday, I had no appetite. I could happily have eaten nothing all day; just having a coffee in the morning made me feel really full. On Monday, I was back to normal; by Tuesday, I was completely ravenous.* There will probably be weeks of me alternately spending days completely uninterested in food, and then making like the Very Hungry Caterpillar and eating my way through anything placed in front of me, up to and including my own desk.

But the Crazy Hunger Swings are not so crazy as the Crazy Cat Lady Mood Swings. I guess I am fortunate in that my mood swings haven't tended too much towards the angry thus far,** but rather to the excessively emotional. For example, yesterday I was walking home from work, listening to my ipod as per usual, when all of a sudden and to my intense embarassment I burst into tears at a Beyonce song. I'm not going to say which song, out of shame, but the fact that I had this sudden surge of emotion struck me as rather hilarious and I then started giggling, so I was walking home laughing and weeping like a complete maniac and generally very glad I didn't see anyone I knew en route. I'm going to try my best not to adopt hundreds of cats and live in a bin liner, but at the rate I'm going the position of local madwoman may well be within my reach very shortly.

After a few more weeks of treatment, hopefully my hormones should be more in balance, but until that happy day every time my eyes well up with tears at the sight of a cute piglet in a teacup, I shall remember The Power Of Hormones.

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*Admittedly not ravenous enough to eat the horrific curried parsnip soup I had for lunch at work, though.

**Although last year I would occasionally find myself becoming suddenly and irrationally furious if someone, say, dared to walk in front of me on the pavement. Happily, as soon as I recognised I was being silly the feeling would go away.***

***And if that didn't work, I used to just push them into the path of oncoming traffic.

My Heart Goes Sha La-La La-La

My rate of posting has dropped slightly recently, down from those heady days in November when I was continually finding out new facts about Russell Watson, and stalking unwitting commentators on the Guardian's website. This is not because I have lost interest in such matters - far from it - but because I'm taking exams at the moment and consequently dedicating my energy to revision and work, rather than obsessive tumourhead fact collection.

Incidentally, the most popular search term for my blog is currently "peoples big noses". Say what?

In any case, as well as spending my days drawing extensive mind maps, and making full use of my considerable collection of coloured pens,* I have discovered a new and interesting fact about my post surgery self; namely that my traditional mild pre-exam nerves (which previously I rather cherished for their ability to get me writing quickly) now serve to completely undermine my body's new-found ability to regulate its own heartbeat.  So, with a speedy speedy heart, the exam was a slightly more stressful experience than I had expected, and I will definitely be carrying beta blockers with me next time.

Ah, tachycardia.

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*Because that's what revision is about.

Owner of A Lonely Heart: Attempts at Diagnosis

When I was a very small child, a combination of my bad hearing and an obsession with ponies meant that I thought the classic Yes song Owner of a Lonely Heart was actually called Owner of a Lonely Horse. Ah, the folly of youth.

As the years went by, I became increasingly good at distinguishing between the hollow muscular organ which pumps blood through the circulatory system, and the large solid-hooved herbivorous ungulate mammal. No doubt this helped enormously when it came to talking to the doctors about my heart problems. Anyway. At the end of my previous post on the subject of my lengthy road to diagnosis, I had left my local hospital's A&E department with a heartrate of 140 and no explanation...

The next day, I went to my GP, who prescribed beta-blockers. Going through my symptoms (rapid heartrate, tremors, fatigue, hair loss, etc) it seemed that thyroid problems were an obvious possibility. I'd had my thyroid levels tested at A&E and they came back fine, but my GP checked again. They were still fine.

And that was the problem: in fact, my levels of thyroid hormone (free T3 and T4) were much too high. But when doctors suspect you have too much thyroid hormone - hyperthyroidism - that's not what they look at. Instead, they test your thyroid-stimulating hormone (TSH) levels. Low TSH implies hyperthyroidism (because your body is trying to lower your thyroid levels by producing less TSH) while high TSH implies hypothyroidism (because your body is trying to increase your thyroid levels).

Unfortunately, my TSH level was within normal ranges, even though the whole time I had a tumour sitting on my pituitary gland, giggling frantically to itself and oozing TSH with the enthusiasm and verve of a naughty child left unattended with a box of felt tips and a newly papered wall. It was on the high end of normal, but without measuring the T3 and T4 you'd never realise that it was too high for my body. I should point out at this stage that I don't blame my doctor for not doing the other blood tests. A pituitary adenoma producing TSH (a.k.a. TSHoma) is a one in a million illness.*

It's not my doctor's fault that he didn't recognise how incredibly special I am.**

So the next obvious possibility was that my sinus tachycardia (rapid heartrate) could be due to - gasp - a heart problem! And boy, did they ever check me out. I wore 24-hour heart monitors on several occassions - once I was wearing one when I went to a formal dinner, and had an interesting half-hour beforehand trying to find a way to conceal the bloody great thing using only a lace bolero and my native wit - and I had an ultrasound scan of my heart. Ultrasound heart scans are pretty cool to look at, but I can't help thinking that they must be more fun for men, who (in most cases) don't have boobs. Boobs are not usually a problem, but they aren't half inconvenient when someone's trying to use The Power Of Sound to examine the circulatory organ located somewhere beneath one of them.

After six months I finally got to see a cardiologist. He told me that I didn't have a heart problem, that it was almost certainly hormonal and I should have further blood tests, and that I should stop taking my beta blockers.

Two out of three of those statements were correct.

I'm still not entirely sure why he ordered me to stop taking my pills immediately, when every other doctor I've seen since has emphasized the importance of coming off beta blockers slowly to prevent rebound tachycardia. And equally, I'm not sure why I didn't protest more. Regardless: I came off the beta blockers, spent a week feeling as though walking across a room was a labour worthy of Hercules, then angrily phoned the cardiology department and insisted that I was going back on the bloody medication.

But despite this slight hiccup, progress had been made. The cardiologist had ordered the right blood tests. I was referred to endocrinology...

UPDATE: You can click here to read about how I finally got a diagnosis. Or click here to go back and read about my first trip to hospital.

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*In fact, a friend of mine who's a medical student told me that one day, when a group of med students were med studenting, a patient's symptoms were described and they were asked for possible diagnoses. One girl suggested a TSHoma. The doctor's response: "Don't be ridiculous, that never happens." I asked my friend if she stepped in to mention that she knew someone with a TSHoma. She did not, apparently because the girl who suggested it as a diagnosis was a bit of a know-it-all and was overdue a put-down. Of such fine things are doctors made.

**Interpret "special" as you will...

My Head Revisited: First Trip to Hospital

I have set this post to appear online at precisely 11.11am on the 11/11/11. If I could define it down to the second, believe me I would. Because I am lame that way. Anyhow. On to the story...

***

In January 2010, a chain of events was set in motion which led to the first of my many trips to hospital and, incidentally, the first time I tried sushi. Of the two experiences, I preferred the latter. From what I've seen, hospital visits rarely come with a side of pickled ginger.

And I love pickled ginger.

Sadly I can no longer remember the date in question, but I think it was around the 18th January; I was back at university and, being a studious and dilligent character, I had spent the entire day sitting in my room reading books about Old English poetry. Consequently, I couldn't quite work out why, ever since I'd woken up, my heart had been beating as fast as though I'd just run for the bus.

At about four o'clock, I used the excellent online stopwatch to work out that my heartrate was around 140 beats per minute. So I decided to do what any sane individual would do when their local doctor's practice is a two-minute walk away. I called NHS Direct.

NHS Direct sent me to the doctors. Feeling like a bit of an idiot, I ambled into the reception, was immediately rushed in to see the nurse (ever wanted to skip the queue? Just develop heart problems!)* and found myself wired up to an EKG, which looked rather like some kind of creepy mechanical chest octopus. I sat there for a few minutes and the nurse agreed that yes, my heart was rather speedy. Then I was sent to a doctor, who took a look at the creepy mechanical chest octopus printout and agreed that yes, my heart was indeed rather speedy.

So the doctor sent me to the hospital. My very nice college booked and paid for the taxi to take me to A&E and I grabbed my very nice friend Cherry to accompany me.

"Heart problems" is one of those magical phrases that gets you rushed through A&E much faster than, say, a mere broken bone or accidental breadknife incident - although of course it does mean that, as an entirely healthy-looking young person, you're liable to get a few evils from the folk who've been waiting there, oozing gently, for an hour.

Once I went through to see a doctor, the fun really started. Immediate assumptions were that either:

1) I must be having a panic attack.
or
2) I must have taken some kind of exciting illicit substance.

I think that option 1 was rapidly discounted due to the carefree nonchalance with which I munched my way through a packet of McCoys** and giggled as the doctor on duty made me blow through a small tube and massage my neck in an attempt to get my heartrate down. Of course, no matter how many times I insisted that option 2 was not an option, they refused to believe me.

Eventually they admitted defeat and sent me deeper into the hospital, where I got a whole bed to myself. Yay! I had a smorgasbord of blood tests and was wired up to another heartrate monitor which, annoyingly, was set to beep frantically any time my heartrate went over 140bpm. As it spent the whole time hovering around the 140 mark, this quickly got extremely irritating.

Cherry kindly volunteered to read aloud my book of translated Old English poetry to me, which resulted in her learning quite a lot of new and exciting vocabulary, like "seraphim", "fetters", and "vassal". Quite inexplicably, she lost interest only partway through a poem.

I sat in the hospital, waiting for my blood test results to come back, until about 11 o'clock at night. The doctors weren't sure whether I'd have to stay overnight, and so Cherry, as well as looking after me very well, (although I can never forgive her lack of interest in Anglo-Saxon literature) also had the fun job of phoning my parents and boyfriend, to let them know what was going on.

Finally, late at night, having had no dinner, it was announced that all my blood tests had come back fine, they had no idea what the hell was wrong with me, and that I should go home. If my heartrate was still fast in the morning, I was told to go back to the doctors.

It was good to be able to phone my parents and reassure them that I was not on death's door, but attempting to go to sleep with a heartrate of 140 is virtually impossible, and I was not reassured when, the next day, the doctor incredulously asked me "they let you go home from hospital with a heartrate of 140 and no medication?", with a look of horror on his face.

But more of that at a later date...

UPDATE: Click here to read my next post about getting a diagnosis. Or click here to go back and read more about my initial symptoms.
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*N.B. This doesn't work as well in the supermarket.

**Incidentally, I hadn't noticed until recently that McCoys advertise themselves as "man crisps". WTF. Seriously, are their marketing team like five years old? Wikipedia, my one true love, tells me that McCoys are, and I quote, 'promoted by United Biscuits*** "as the only overtly male-targeted crisp brand"'.  Don't believe anyone would say something that stupid, let alone base an ad campaign around it? Here's the website.

***Words fail me.

Health, Wealth & Happiness

In the ladies bathroom* at my place of work, a minor change was recently wrought when the former hand-drier/paper towel dispenser combo were replaced by a single hi-tech hand drier, of the new variety which seem designed not merely to blow water off your hands, but to have a crack at taking the skin off as well.

It's highly efficient, no doubt, and proudly states that by using it, you are helping to reduce landfill and thereby save the world. But today, after walking to work in a downpour, I found myself reflecting on the fact that its highly-specialised hand-drying design has come at the cost of other convenient functions of the hand-driers of old: namely, drying off wet clothes and hair and warming you up a bit. Of course, you can still use the Air Force Sandstorm Erosion™ to dry your hair. Providing you don't mind being scalped in the process.

But anyway, it got me thinking about its designers, who were no doubt given a clear spec: make the best hand-dryer possible. And they did. And everyone was delighted. It probably wasn't until monsoon season rolled its way around to Dryer Towers** that someone thought: 'Hang on a minute - the old hand drier was far less exciting and high tech, but at least it could deal with waterlogged socks.'

And, in a really obscure and slightly convoluted fashion,*** health is kind of like that, in that you don't notice what you've got til it's gone - but even then, sometimes it can take a surprisingly long time to catch your attention. I went from someone who never, ever had a headache to someone who got them regularly, but the change was so insidious over several years that it never even occurred to me that maybe I should mention this to a doctor - even after my heart had made it blindingly obvious to all and sundry that there was Something Clearly Wrong. Yes, I am just smart that way.

 Now, I find myself (thank everything) on the flip side of that because I am (thank everything again) currently slowly getting better. Yes, I'm still not quite right, my hair's still falling out and my heart gave a very brief but exciting display of acrobatics as I ate my pasta last night,**** but I am so much better than I was. And I'm still in that happy honeymoon zone of improved health, where every now and again I have to take a moment to appreciate the fact that I can run for a bus without hyperventilating, that I can dance for an hour without needing a sit-down, and that my bruising has improved to the point where most days I can wear a skirt with no tights and not look like a victim of domestic violence.

 Obviously the hope that I'm hoping ever so fervently is that I'm fixed and will continue to be fixed and, bar the odd MRI and pituitary-adenoma-related chat (for old times sake) I will darken my local hospital's doorstep much less frequently. I don't know if that will happen. But, although no doubt we'll all get used to the new hand dryer in time, I hope that - for as long as this improvement lasts - I don't lose my appreciation for feeling healthy :D

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* I say bathroom. I mean toilets. There is no bath in there. Because that would be weird.

**Just to clarify, I am making this up.

***Or, if you live in my head, a really obvious and straightforward one.

****Because the pasta was just that good. Incidentally, another side effect of this illness has been that I've completely lost all ability to appreciate lines in songs like "my heart skips a beat". I just hear them and think: Quick! To the cardiologist!

Like a pig in a china shop?

Back in the mists of a misspent youth (or rather, a misspent gap year) I used to work for a large yet mysteriously anonymous organisation in the south-east corner of our great nation. In my former workplace, we had several different ways to pass the time. Some of these hobbies were fun; some less so.* One of the least mentally-scarring pastimes involved coming up with pointlessly lengthy expressions of surprise and/or anger (for example, a phrase popularly directed at the photocopier was "jesus christ on a bike in the snow"). It's a habit that I've continued to indulge occassionally; when the printer just won't print, it's very soothing to call it an ingrate macaroon-munching shitwizard.

Anyway: today, in a very exciting move, I went to a dance class and entirely failed to drop dead in the middle of it. This may seem a paltry achievement to those of you blessed with the kind of ruddy good health featured in your nearest BUPA advert, but I was rather proud! And even more so when I stepped outside afterwards to check my heartrate** and found it running a cool 80-odd beats per minute. NICE. So much for my sinus tachycardia!

The downside was that the hall where the dancing takes place is possibly the World's Hottest Room. The windows had steamed up before I'd even arrived (and incidentally, the hall's managers - obviously keen to keep the title - have also had the windows chained shut). Consequently, I had only two-thirds of my brain free to focus on attempting not to a) fall over, or b) kick my dance partner, because the other third was busy having an existential crisis over whether or not I was actually melting. It was at this point that my mind went back to those happy days in Anonymous Office Space #1,*** and I tried to come up with as many creative permutations of the phrase "sweating like a pig" as possible.

 But I felt pretty proud/unpleasantly smug because I know that earlier this year I would never have been able to keep going through the whole class, especially in such a tropical climate. It just goes to show that things can change so quickly in a pretty short space of time, without you every noticing the baby steps along the way.


Short version of this post: Dance was fun and I feel THIS GOOD.
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*Like the time I was forced to listen as the terrifying woman opposite me explained that there was no point in buying whips from Ann Summers when - and I quote - "a tea-towel will do".

**Also, to leave.

***Which, ironically, was extremely cold after our department overspent on electricity and all the heaters were removed by grim-faced folk from Finance.