Phone Calls Galore

Yesterday I went into the hospital to have some blood tests done - sodium levels and thyroid-stimulating hormone levels. I got the results this morning in a phone call from my endocrinologist - speedy service! - and the good news is that they're both normal and, indeed middle-of-the-normal-range. Hurrah!

My endocrinologist suggested that one of the reasons I might still be getting so tired is that my body could be effectively "crashing"; having been used to fairly high levels of thyroid hormone coursing through its veins, suddenly having lower (if more normal levels) might come as a bit of a shock. Having too much thyroid hormone (hyperthyroidism) gives symptoms similar to an excess of adrenaline, all the body's systems speed up - heartbeat, metabolism etc - while having too little thyroid hormone (hypothyroidism) is characterised by more of a "slowing down", with symptoms like fatigue being common. Happily it seems that I'm not hypothyroid, but after having been hyperthyroid for a fair while, my body may still be struggling slightly to adjust to the lower thyroid hormone levels.

I also have been back to my old tricks of chasing the bloody hospital up for appointments. I was expecting an appointment with ENT four weeks post surgery - as today is my four-week anniversary and I'd not heard anything, I called them. Apparently they were "never notified of my discharge" and consequently no appointment was booked. So I won't be seeing them until the 7th March. Endocrinology have booked me in for a clinic appointment to see the doctors, but appear to have neglected to book me in for the various blood tests I'm supposed to have before then; unfortunately they don't like having humans answer their phone, so I've finally had to leave them a message asking what's going on.

Opthalmology have gotten involved now and want to check my eyesight is ok, as pituitary surgery is carried out very close to the optic nerve and there is a risk of damage to the vision, but I've yet to arrange a date with them because, having made all these other phone calls, I am tired. And it's almost lunchtime.

More Blood Tests

Had a phone call from my endocrinologist today. On the 22nd January, I had blood tests done to check out my serum osmolality, which basically looked at the sodium levels in my blood. Getting the results was not so simple; I was registered as a temporary resident at my old GP's where my parents live, and the GP was not confident about interpreting the results of the test, as he does so few of them, so he faxed the results for my endocrinologist to interpret.

I never heard back from my endocrinologist, and although I thought about calling frankly I couldn't be bothered because trying to get a hold of them is always such a ridiculous faff. So I assumed no news was good news. Then they called today, to say that when the blood tests were taken, my sodium levels were a bit low. So I need to get that checked out with another blood test. It's fairly common for sodium levels to drop a bit right after this kind of surgery and then self-correct, and I don't really have any symptoms of low sodium levels, so I guess we'll have to wait and see.

The endocrinologist asked how I was feeling and whether I was "back to normal", which kind of surprised me as it's only been three weeks and two days since the surgery. I said no, which seemed to surprise her - she asked in what way, so I explained that I get tired, I'm still kind of slow and I get worn out quite easily (I occassionally get a little headache and my nose is definitely not back to normal but the tiredness is definitely the key point!). All of which seemed perfectly normal to me shortly after a major operation, and in fact I'm considerably less tired and slow than I was after my last surgery (although that is mainly because I was super pathetic last time). But she wants to check out my thyroid levels as well, in case my tiredness is a symptom of hypothyroidism; there's always a risk that, having removed the pituitary tumour producing thyroid-stimulating hormone, they've removed some of the healthy pituitary tissue as well and that therefore I've gone in the other direction and now have low, rather than high, thyroid levels.

I was a bit worried about that immediately after the phonecall, but then my boyfriend pointed out that she could well have been mixed up as to how long ago my surgery was, or that they could just be being very cautious. Because I had an injection of lanreotide (which lowers your TSH levels) just a week and a bit before the surgery, there's also the possibility that the drug is still in my system and is now lowering them too much.

So the long and short of it is: more blood tests, wait and see!

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!

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!

IMFW: "Excited Delirium"?

Today's Interesting Medical Fact of the week is about a medical condition that may or may not, in fact, exist. Wikipedia defines "excited delirium" as "a condition that manifests as a combination of delirium, psychomotor agitation, anxiety, hallucinations, speech disturbances, disorientation, violent and bizarre behavior, insensitivity to pain, elevated body temperature, and superhuman strength." Never heard of it? Neither had I.

Excited delirium is not  recognised as a cause of death by the Department of Health or the World Heath Organisation. It has become an extremely controversial topic in the UK recently, due to the death of Jacob Michael, a 25 year old man who died last year in police custody. The Home Office pathologist found that he died of excited delirium; Michael's parents disagree, arguing that the pathologist ignored the effects of heavy police restraint on their son.

Excited delirium has been cited as a cause of death in a number of death-in-custody cases in the UK, and more in the US; it started turning up in pathology reports in the 1980s. Many of the people who are reported to have died of excited delirium have cocaine or other drugs in their system, and it's been variously suggested that their death is due to excessive adrenaline or organ failure due to a massive spike in body temperature, with the risk of death being increased by pre-existing conditions.  But  Eric Balaban of the American Civil Liberties Union suggested that the diagnosis of excited delirium is used "as a means of white-washing what may be excessive use of force and inappropriate use of control techniques by officers during an arrest", with most reported cases of the disorder found in people who have died in custody.

There may be an explanation for this; Dr Vincent Di Maio, a former chief medical examiner in Texas, suggested that it is the very act of resisting or fighting with police which tips sufferers over the edge, and that police then wrongly get the blame. Some doctors have said that deaths from police brutality are clearly distinguishable from those due to excited delirium, with the physical marks of brutality obvious; others have accused taser manufacturers of using the diagnosis to explain away the deaths of people who have been hit with tasers. It's pretty much a minefield of conflicting opinions.

But Balaban argues that the symptoms of excited delirium are simply the symptoms of mental illness, possibly exacerbated by drug use; and this article looks at other medical conditions which can look like excited delirium, listing delirium tremens (alcohol withdrawal), hyperthermia (severe overheating), severe low blood sugar in diabetes, traumatic brain injury, viral encephalitis and thyroid storm (massive hyperthyroidism often caused by very high stress). The article does not mention epilepsy, but in some cases epileptic fits can lead sufferers to become extremely disoriented and confused, and there are probably several other disorders which could give rise to symptoms similar to those of "excited delirium".

It's an interesting debate to follow, although as someone with little knowledge of either medicine or police work, I'm hardly qualified to draw any conclusions. There's also the issue that the question of excited delirium is twofold; some question whether it is a medical condition at all, whereas others merely question whether it's a medical condition which in itself would actually lead to death. I will follow the debate with interest.

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...

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...