Acromegaly Community

I am a little overexcited that the piece I wrote recently about Kate Woodward, the girl with acromegaly who sued the NHS, has been posted on the Acromegaly Community blog. It's an excellent website that I have frequently read in the past so I was delighted to hear from them when they asked to post the article! (Thanks, guys). It's definitely highly recommended if you have acromegaly. If you live in the US, it also has some very useful information on financial support for your prescriptions, information on discrimination in the workplace, and medical studies which are currently recruiting.

Plus, if you're passing by you can click 'like' on my post >.>

The Sound of Striped Hooves

Around a year or so ago, an interesting thing happened to me. I was in the car with my mother, we were driving down the motorway, and there was a car pulling a horsebox in front of us. We were going rather faster than the horsebox, and as we passed it, I looked inside and saw… a zebra. It was only a glimpse and it confused the hell out of me for a moment, but I am still sure it was a zebra, not a horse, inside that horsebox.* At first I was slightly worried I might be going mad, but my mother pointed out that there are plenty of zoos and animal parks around the place and presumably they must transport their zebras somehow.

Folk of a medical persuasion will probably see where I am going with this, but I promise it is an entirely true story, the proof of which is that it took months and months for it to occur to me that I could use it on this blog. What can I say? I am slow.

Healthy people are probably wondering why I am blathering about hoofed african mammals instead of my usual cheery chat about tumours, but fret not. All shall be revealed.

A zebra is, as Wikipedia (and, I believe, Scrubs) so nobly tells us, the medical term for a surprising diagnosis, which rather begs the question of what we should call those stripey ponies running around in nature documentaries. It comes from the aphorism that when you hear hoofbeats behind you, you don't expect to see a zebra. This is a wise observation which is totally inapplicable to anyone who lives in the African plains, but as it was coined by an American doctor in the 1940s, this oversight may perhaps be forgiven. The point is that when a doctor is presented with a set of symptoms which may be caused by a common illness or an uncommon one, the logical assumption should be that the patient most likely has the more common illness - even though there may be a temptation to go with the more dramatic diagnosis.

I have noticed this idea of being a medical zebra popping up in a few blogs by other people with rare pituitary tumours, particularly in those with Cushing's disease - possibly this is related to the fact that one of the symptoms of Cushing's is the development of dramatic stretchmarks of a stripey and thus zebra-like nature. A few further examples - here, here and here.

A group of Cushing's sufferers at a recent conference.

I guess I count as a medical zebra myself; my symptoms of hyperthyroidism such as tachycardia, hair loss and frenzied blogging** would normally be considered as indicating Graves disease or something - and even when the more common thyroid malfunctions were ruled out, it was considered more likely that I had a condition called Resistance to Thyroid Hormone than thyrotropinoma. But no, my body had picked the most unusual way it could think of to break down, and I was neither a horse, nor a pony, deer, mule, donkey, nor any one of a number of hoofed creatures which are more common in the UK than zebras.

Neighbours of Lord Rothschild may not only have expected to see zebras when they heard the sound of hoofbeats, but also had to leap out of their way.

Medical zebras are a tricky subject, on the whole, and there's obviously a balance to be struck. While it can be frustrating for those of us with unusual conditions to think that we waited a long time for a diagnosis, it would be far worse if doctors went around ignoring common diagnoses in favour of the weird ones. Equally though, doctors should be aware that just because something's weird and unusual doesn't mean it's not sitting in front of you - as anyone who's come face-to-face with Boris Johnson could tell you.

It's enough to make you wonder how rare your condition would have to be before you were considered a medical okapi...

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*Unless someone had painted a horse to look like a zebra. Which would be a pretty weird thing to do.

**Hint: one of these is not actually a symptom.

IMFW: Thyrotoxic Period Paralysis

Today's Interesting Medical Fact of the Week is about thyrotoxic periodic paralysis, a curious malady occurring mainly in men of Japanese, Vietnamese, Chinese, Korean Thai and Filipino descent - and Native Americans are also at greater risk, as they share a genetic background with East Asian people. The condition causes attacks of muscle weakness and paralysis and usually occurs in the presence of high thyroid hormone levels (hyperthyroidism) and low potassium levels (hypokalemia).

The attacks of paralysis can be brought on by exercise, drinking alcohol and eating food high in carbohydrates or salt, and they can be dangerous if they lead to respiratory failure or irregular heartbeat. This condition can be treated by first correcting the hypokalemia, then the hyperthyroidism; once treatment has achieved normal thyroid levels, this usually leads to a complete resolution of the problem.

Thyrotoxic period paralysis is commonly associated with Graves Disease, although other illnesses which lead to high thyroid levels (including TSH-producing pituitary adenoma... yay!) can also cause the condition. It's not fully understood and there is still confusion over why males are predominantly affected despite the fact that overactive thyroid problems are more common in women.

Lyrically Sick

Apologies for the lack of blogging of late, I have been on holiday! I cunningly set my Interesting Medical Fact of the Week to automatically post on Monday, having written it last week, but don't be fooled. I spent the weekend at the Edinburgh Festival, which was amazing, and this week I'm at my boyfriend's house many miles away, so although technically I have had access to a computer, my impetus to blog has not really been there and also, nothing that exciting and medical has happened.

But no more! I have decided to get cracking on a post I intended to write some time ago, in which I will look at the lyrics of popular songs and attempt to diagnose the singer on the basis of the symptoms they describe experiencing when viewing their beloved.

Before you judge me, perhaps I should clarify that the song selection should in no way be held as representative of my own musical preferences and was chosen purely on the basis of medically interpretable lyrics. 

First up we have:

Olly Murs - Heart Skips A Beat - Postural Orthostatic Tachycardia Syndrome

So come on, spin me around 
I don’t wanna go home 
Cause when you hold me like this 
You know my heart skips, skips a beat

Olly Murs describes experiencing ectopic beats, or the sensation of a skipped or missed heartbeat - not to be confused with ectopic beets, which is when a beetroot grows in your fallopian tube. This is a very common form of cardiac arryhthmia, and indeed is really nothing to be concerned about in a healthy adult.

However, Mr Murs indicates that his palpitations occur only when the object of his affection spins him around and holds him in a particular way. This could indicate that he is suffering from postural orthostatic tachycardia syndrome, a condition in which the body struggles to deal with the changes in blood pressure occasioned by a change from a lying-down to an upright posture, or even by more minor changes in posture, and the heartrate increases dramatically as a result. Olly Murs may find his symptoms improved by increasing his fluid intake, taking regular exercise and wearing strong support tights.

Lady Gaga - Poker Face - Prosopagnosia

Can't read my, 
Can't read my,
No he can't read my poker face.

Ms Gaga reports that the apple of her eye is unable to read her poker face. Sad to say, he may well be suffering from a condition called prosopagnosia, also known as 'face blindness', in which the ability to recognise faces is affected. Sufferers may be unable to recognise even their own face, and are forced to rely on other qualities such as voice, gait, and clothing to tell people apart from one another. Ms Gaga would be able to help her friend to recognise her by, for example, picking a distinctive piece of clothing and always wearing it around him. Perhaps a hat made out of a telephone would suffice.

Katy Perry - E.T. - Capgras Delusion

Boy, you're an alien 
Your touch so foreign 
It's supernatural 
Extraterrestrial

In this song, Katy Perry appears to be under the impression that her significant other is from another planet. In this, it would seem likely that she is suffering from Capgras syndrome, in which the sufferer has the delusion that a close friend or relative has been replaced by an identical imposter. It may occur in cases of schizophrenia, dementia and brain injury, and it has been suggested that the Capgras delusion is in a sense the opposite of prosopagnosia, in that the person's ability to consciously recognise someone's face is intact, but they are lacking the unconscious emotional response to seeing the person's face.

Alas, that is all for now as I am totally out of inspiration. I may continue at some later date. Suggestions for songs/medical conditions greatly appreciated!

IMFW: Harvey Cushing

This week's IMFW is really more like an IMPW - an Interesting Medical Person of the Week. Harvey Williams Cushing is often regarded as the "father of modern neurosurgery".

An American descended from a long line of doctors, he was born in Ohio in 1869. After studying medicine, he went on to study surgery at the famous Johns Hopkins Hospital just after it had opened, then spent time in Europe before returning to Johns Hopkins as an associate professor in surgery. As well as writing about medicine, he was a talented medical illustrator and several of his drawings were published in textbooks - and as if that wasn't enough, he received the Pulitzer Prize for Biography for his biography of his mentor, William Osler.

Cushing's first monograph was on the subject of the pituitary, and on this blog, you'll have heard Cushing's name from one of his most famous discoveries, the disease named after him - Cushing's Disease; a tumour of the pituitary gland which secretes ACTH (adrenocorticotrophic hormone) and causes a range of symptoms including weight gain, bruising, sweating, high blood pressure and diabetes. Being a modest chap, he had originally named it "polyglandular syndrome", but his name stuck. However, this was far from his only contribution to medicine:

- He introduced blood pressure measurement to America

- He used x-rays to diagnose brain tumours

- He developed medical instruments which are still in use today, including the Cushing Forcep which is used during cranial surgery, the Cushing clip - a small clip for blood vessels to stop bleeding during surgery, which dramatically decreased mortality rates - and the use of electrocautery which he developed with W.T. Bovie, a physicist

- Along with a colleague, Ernest Codman, Cushing devised the first anaesthetic chart to help surgeons and anaesthetists monitor pulse, temperature and breathing - an innovation which was widely adoped

- Cushing pioneered many new surgical techniques including the use of saline for irrigation during surgery

- He developed a surgical cure for trigeminal neuralgia

- His mortality rate was around 10% - which doesn't sound hugely impressive until you realise that before he came along, mortality rates from neurosurgery were 50 - 90% depending on which source you believe

- He developed the transsphenoidal approach for surgery of the pituitary gland

- He invented the macarena (just checking you're paying attention...)

- He identified and named the phenomena of hypopituitarism and hyperpituitarism


Yes... yes, that is a skull.

 So Mr Harvey Williams Cushing deserves our gratitude and respect. He has thoroughly earned the bewildering array of unpleasant medical things named after him, which include: Cushing's Syndrome, Cushing's Disease, Cushing's symphalangism (a.k.a. proximal symphalangism), Cushing's Reflex resulting in Cushing's Triad (a nervous system response to increase intracranial pressure), Cushing ulcer a.k.a. Rokitansky-Cushing Syndrome, Bailey-Cushing Syndrome (he had to share that one), the Cushing forcep and Cushing clip.

Girl with Acromegaly Sues NHS

A story broke some time ago about a young lady with acromegaly who sued the NHS, and won. I've been meaning to write about her for a while but I wanted to take the time to create an interesting and informative post contrasting her case with that of Kane Gorny. Alas, I have not had the time, so you'll just have to deal with a dull and uninformative post instead. Hurrah!

The story is this: Kate Woodward, an aspiring actress, developed acromegaly (i.e. a pituitary tumour secreting growth hormone, which lead to uncontrolled growth of her body) as a child, which went untreated between 2001 and 2005 as medics failed to spot the condition. She attained a final height of 6'5" aged 20, and sued the NHS for £2 million. She was awarded compensation of £1.3m.

Incidentally, the award for "least sensitive headline about this story" goes to Healthcare Today UK, which went with "Freak Growth Woman Sues NHS".*

Nice.

Her case for being awarded this level of compensation was that, as a result of her condition being untreated for so long:

- Her height and "ugliness" meant that she could no longer go into a career as an actress.
- She has psychological difficulties and feels like a "freak" because of her condition.
- She has significant problems with her bones, knees and teeth, and cannot buy normal-sized clothes.
- The condition affected her childhood, schooling and friendships.

And, most significantly:

- She wishes to receive all future treatment in the private sector.

Now, not long after this story was first brought to my attention (by a colleague, thank you!) I noticed that it had also popped up as a topic of discussion on the Pituitary Foundation's forum. For those of you who don't subscribe, one member created a poll entited something like "Should Kate Woodward be ashamed of herself?" The results of the poll were overwhelmingly that she should (although in fairness by "overwhelmingly", I mean "there were four votes in total").

Why the anger? Surely she has a fairly good case, right? Undoubtedly, when a doctor is presented with a girl who measured 5'9" at just eleven years old and keeps growing, you'd hope that it wouldn't take four years to just Google it and think "hmm, maybe we should rule out acromegaly". Although we can't know that faster treatment would have effected a cure, it might have controlled or reduced the symptoms. She will have to live with injections and monitoring and joint problems and feeling self-conscious for her whole life.

BUT.

The problem is that this is not, actually, an unusual case - at least, not within the magical world of pituitary tumours. If every person with acromegaly decided to sue the NHS for delayed diagnosis, it would be one hell of a bonus day for lawyers. If you threw in people with other often-missed pituitary conditions like Cushing's Disease and TSHoma, it would probably result in a sudden UK lawyer shortage as they all retired to small Caribbean islands. If you based the level of compensation awarded on the number of years the condition went undiagnosed, the small Caribbean islands would probably reinvent themselves as world financial hubs.

I exagerate. But the mean length of time from onset of symptoms to diagnosis of acromegaly is, according to this MedScape article, around 12 years. Even if that estimate is too high, the point is that pituitary tumour conditions can be hard to diagnose, and they are often missed because they're rare enough that doctors don't see them often, and often don't expect to see them either. Four years to diagnose a patient with acromegaly is, sadly, not uncommon. I first showed symptoms of my TSH-secreting pituitary tumour aged 17, and I didn't get a diagnosis until I was 22. (In case you're bad at maths, that's five years). Even after my superfast heartrate made it clear that Something Was Wrong, it took a year to work out what that something was.

So if there's a slight lack of sympathy from other acromegalomaniacs,** it could be because they're thinking "Damn, £2m! Wish I'd thought of that."

 But I doubt it.  And I'm not just saying that because they're bigger than me.***

Now I want to note right off the bat that where there is evidence of medical negligence or it takes a long time to get a diagnosis, you should complain. Vociferously. You should complain in the hope that procedures can be improved. Otherwise there's nothing to stop future patients from suffering through the same tortuous process to find out what's wrong with them. But there's a difference between seeing a problem, taking a complaint as far as necessary to fix that problem for future patients, and just suing to get as much as you can out of them. Through the normal complaints process, the hospital in question offered Miss Woodward compensation of £700k, no court appearance required. If she lives to the age of 90, that would be £10,000 medical expenses covered every year. Additionally, according to the Daily Mail, which I personally take with a pinch of salt and under the supervision of a doctor, the hospital trust had already spent £288,000 on Miss Woodward for "treatment, dental care, holidays and special footwear".

Even the £500k difference between what she was offered and what the court awarded is a big chunk of money. £500k that could have gone towards treating other patients. I need somatostatin analogue injections (probably much like those Miss Woodward takes), and if you've been reading this blog lately, you'll know that it is proving slightly tricky to persuade someone to fund them. £500k could pay for 666-and-a-bit doses of those injections. Which doesn't sound like that much, until you realise that each dose lasts for a month, so £500k worth of injections would last me for fifty-five years. And six months. Assuming I needed them continuously. And of course by that point I would be 79-and-a-half, so chances are I could be dead by then anyway.

 And here's the thing. If the NHS messes up and, as a result, you end up incurring further costs in your daily life (eg. you're a professional tap dancer going into hospital for an appendectomy, and you wake up with a leg missing) then yep, you should get compensation and if they won't agree to pay it, sue them with my blessing and encouragement. If the clinical negligence of your child at birth leads to brain damage which will affect that child for their entire life, then sue for the money needed to support them. And if/when the NHS messes up so badly that it becomes a danger to other patients, and you follow through that complaints process and nothing changes, sue them until they sit up and pay attention and mend their ways.

 But I am somewhat uncomfortable with suing the NHS for the loss of a career that did not yet exist, and for the costs of having exactly the same treatment as the NHS provides, but done privately. (I'm also intrigued by the concept, since she presumably did not have private health insurance before diagnosis and consequently insurers would be unlikely to cover her pre-existing condition?).  I've had an MRI scan done by a private provider and done by the NHS and the experience was almost exactly the same - except the private hospital was a lot harder to get to on public transport.

I guess in some way I think that when the NHS messes up, part of the compensation is the NHS. The very fact that you live in a country where you don't have to worry about the cost of healthcare means that when the NHS makes a mistake, it - not you - ends up bearing any increased costs of your care as a result of its mistake. Perhaps in some countries when a patient gets a hospital-acquired infection, their bill from the hospital is increased - but in the UK, if a hospital gives you an infection, it has to foot the bill to try and fix it.

But it also means that when you sue an NHS hospital in the UK, you're not taking lobster off the table of a fat cat investor (well... not yet... comments about Mr Lansley on a postcard, please). You are taking money away from that hospital. Any sensible hospital trust will have a big old stash of contingency fund to cover the cost of lawsuits, but I still confess I'm uncomfortable with the idea of suing the NHS for anything less than an ironclad reason, because that money could be put to better use. It could be used to help treat someone just like you.

I don't think Kate Woodward is a bad person, and I don't think she should be ashamed of herself. I simply don't have sufficient details to form an opinion on this case, and she may well be entirely justified. But she sparks off an interesting debate. That's my opinion. What's yours?

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*I noticed Jon Danzig, a journalist with acromegaly, took them to task for this in the comments section of the article, good on him!

** I don't know what the collective noun for "a group of people with acromegaly" is, but it should really be this.

***Common misconception: people with acromegaly only become very tall if the condition develops during childhood/adolescence. If it develops in adulthood, it will lead to bone and soft tissue growth but usually won't increase height much, if at all.

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.

IMFW: Skinny Minnie or Stressy Bessie?

My favourite medical fact of the past week has been that a study has indicated that men in stressful conditions are more likely to find larger women attractive. Presumably this should prove useful to husband-hunters everywhere - the more slender ladies can go on the prowl at yoga centres and juice bars while their heavier sisters can target office blocks and traffic jams... In less jolly news about things that are definitely true, a man with Parkinson's was arrested at the Olympic men's cycling road race. His illness meant that he did not "visibly appear to be enjoying the event", and this coupled with his proximity to a group of protestors apparently was enough for him to be arrested for breach of the peace.

The Power of Negative Thinking

I like to think of myself as a reasonably positive person. I try not to let all my medical bother get in the way of having fun, and I also try, on the whole, not to continually go on about my bloody pituitary tumour to other people (unless they are foolish enough to ask, of course). That's one of the nice things about having this blog. As well as a place to vent after my third phone call to the hospital in a day, and a lovely way to get into contact with people going through similar medical fun times, it provides the option for those of my friends who give a shit about the details of what's going on inside my head to keep up-to-date, and enables those of my friends who don't to… not.

Not that I judge those guys, but if you're reading this, you're one of my favourites. SHH DON'T TELL ANYONE.

One of the things that gets my goat* a little is being told to "stay positive". This only happens very occassionally, but when it does it kind of grates. A) I am trying and B) the nature of reverse psychology gives me an uncontrollable urge to shout "screw you, I can wallow if I damn well want to!" Everyone needs to be allowed to feel blue without being made to feel guilty, and for the most part a hug is all that is required to cheer me up. I should point out that I know the people who say "stay positive" mean well and I do not hold it against them, because it can be hard to know what to say to a persistant offender of the unhealthy variety. But it gets me pondering.

Indeed, I was pondering about this the other day and realised that actually, I would argue that when you're sick, negativity has a useful part to play (as long as you're sensible about it and don't just end up depressing yourself). Take my current situation, for example. I knew that even back last winter when my thyroid blood tests were coming back within the normal range and my endocrinologists were excited that I might be cured, I still felt a bit symptomatic. I could have stayed positive and said "I'm sure it's probably just a bit of a hangover from spending a year and a half ravaged by thyroid hormone. The blood tests say I'm fine so I probably am. Hurrah, I can forget all about this horrible tumour business!"

However if I had done that, then the news that I am not cured and that the tumour has grown back and that I need more surgery and possibly radiotherapy would have been even more crushing. Instead I always tried to keep in mind that more surgery was a possibility because I knew I didn't feel 100% right. And consequently when I got the news, it was less of a shock because I had already prepared myself for it.

Equally I think always taking into account the worst case scenario can not only make the negatives less unpleasant if they finally do hit, but also makes the positives more uplifting. If you go around staying positive all the time, then when you get good news it's not so much of a hurrah-moment, because you're really just getting confirmation of something that you were trying to convince yourself was true. If you're prepared for the worst, on the other hand, even slighty-bad news can seem like an improvement.

I actually think it's really sad when you read articles in magazines (usually in doctor's waiting rooms…) that extol the powers of positive thinking to heal. It really does just pile on the guilt. Feeling sad or worried is a perfectly normal response to illness and to me it just seems healthier to accept that and deal with it and move on. Being constantly instructed to feel positive all the time is only going to make the person feel guilty when they can't manage it. (And please, show me the healthy person who manages to be positive 100% of the time. If moments of negativity caused illness, we would all be sick). When you then compound that by saying that positivity will heal, it creates even more guilt. If the person doesn't get better, it's their fault for not being positive enough. But they're not better so they find it harder to be positive. And so on.

So acting like Eeyore all the time has its benefits.

As long as you don't turn into such an unrepentant cloud of gloom that no-one can stand to be around you.
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*N.B. if you find my goat, please return him immediately.

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.

Film of transphennoidal endoscopic surgery to remove a TSHoma

So while I don't wish to make everyone feel as nauseated as these injections sometimes make me, I found a film of transphennoidal endoscopic surgery to remove a TSHoma! How exciting! This is the type of surgery I will be having soon, probably around November time. The person whose head this was filmed inside is one of my fellow TSH-producing pituitary tumour brethren.

Don't be fooled, it doesn't actually just take six minutes. There's a whole lot of drilling down your nose required first.

Looks pretty simple to me. Well, I mean, it's not rocket science, is it?

The above is a) more suitable for an audience of a delicate disposition and b) one of my favourite Mitchell & Webb moments!

Head = achy

I have had such a pituitary headache today! Right in the middle of my face. I'm hoping that's because the tumour is being battered mercilessly by the lanreotide zooming around in my system.

The Problem WIth Biliary Sludge

Good news at last! The lovely endocrine nurse at the hospital got it sorted and I had my Somatuline Autogel injection this afternoon. Hurrah! They still haven't worked out exactly how my next injection will be funded, but they've got four weeks to do so, and I'm already booked in for the next appointment so I will be turning up expecting it to be very much All Sorted Out by then.

The lanreotide injections do have a bunch of possible side effects, my nurse gave me the list. It is a long list so I just picked a few of my favourites:

- biliary dilatation (don't know what that is but it sounds unpleasant)
- alopecia (because so far my hair just hasn't been falling out enough)
- sinus bradycardia a.k.a. slow heartbeat (YES PLEASE)
- general physical weakness (as compared to my usual muscular state)

I've had these lanreotide injections before, so I know that for me they usually make me nauseous for the first couple of days. Then after that they tend to make me quite prone to bouts of hypoglycaemia so I have to carry around sugary things (usually I'm bad and carry sweets but this time I have invested in some tasty dried fruit). Some people get gallstones and diarrhoea and headaches and all sorts so I guess I am fairly lucky.

I was chatting to my endocrinologist about going back on the injections and he asked if I had any bad side effects so I explained the above and said that the last time I went on the injections I read online that eating an extremely low fat diet for the first few days after having an injection can help reduce side effects, and that since doing so I found I didn't get so nauseated.

I also mentioned how the first time I had them, I was led to expect they would be so awful that it was actually kind of a pleasant surprise just to feel sick for a few days. But obviously they had to tell everyone it might be as bad as the worst case scenario, just in case.

He nodded sagely and said, "Ah yes, the old biliary sludge problem."

I had no idea what he was talking about, although it did occur to me that Biliary Sludge sounds like the name of a character from Dickens.*

Maybe that's just me.

As it goes, it turns out that biliary sludge is the precursor to developing gallstones if you're on this medication, it's like lots of teeny gallstones which build up and slosh around in the pancreas. It's caused by a low turnover of bile in the pancreas (which this medication can cause) and it can be improved by eating a low fat diet. But you're much more at risk if you're overweight or obese, so hopefully I should be fine.

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*He would have many jowls, and a faded red velvet coat, and his whiskers would be full of yesterday's dinner.

Please Sir, Can I Have My Medication?

Regular readers will remember that earlier in the year I was lamenting the fact that my stupid GP's forced me to change GP surgery after I moved a few minutes down the road, due to their weird practice boundaries. At first I thought this was just Massively Inconvenient And Stupid, but in fact it's gone on to have far more serious ramifications.

At present I am thyrotoxic; I have way too much thyroid hormone sloshing around my body, because my pituitary tumour is producing a hormone which is overstimulating my thyroid gland. It has been getting noticeably worse recently; over the past few weeks I have had to up my dose of the beta blockers I take to control my excessively fast heartbeat from 1 - 2 per day to 2 or more frequently 3 per day. I'm noticeably more jittery, I get shaky hands sometimes, I'm getting much more tired more easily. I feel pretty rubbish right now.

The medical universe strongly agree that I need to go on lanreotide injections to stop the tumour producing thyroid stimulating hormone immediately. Like right now. Like actually we should probably have put you back on them at the start of July.

They do not agree on who should pay for it.

My injections are expensive; they cost about £750 a pop (one injection lasts for four weeks, so they cost about £27 a day). My old GP noted that they were more expensive than uranium, but he went on and prescribed them anyway.

My new GP noted that they were more expensive than uranium, and that they are now on our PCT Red List.

The Red List is a list of drugs that should only be prescribed by a specialist, not a general practitioner. It has been suggested that more PCTs are red-listing more drugs to make savings cuts. I could not possibly comment on that. What I do know is that despite the fact that my specialist endocrinologist requested my new GP prescribe them, this is apparently not enough, and after consulting with the PCT (primary care trust) she was unable to do so. The problem is complicated by the fact that the long-acting form of the drug I need (Somatuline Autogel) is not technically licensed for my condition (TSHoma). The older, short-acting form is licensed, but it only lasts ten days, and who wants injections every ten days? Essentially this is just wrangling, but my GP doesn't want to be held responsible for prescribing an unlicensed drug for me, should anything go wrong. She is playing by the book, which is a stance I can sympathise with.

Fortunately the day after I first found out about this issue, I went into the hospital for an appointment and informed my various endocrinologists of the problem. They immediately requested that the specialist nurses order in the first dose of the drug for me so that I could have it administered as soon as possible.

The nurses already have the syringe full of delicious lanreotide. It came in yesterday.

I could have had the injection yesterday. I could have had it today. I could even have it tomorrow, but I don't know if I will - because even though the first dose has been bought and paid for and is SITTING IN A FRIDGE WAITING FOR ME, they are wrangling about who should pay for the next dose.

The next dose.

WHICH I DON'T NEED TO HAVE FOR FOUR WEEKS.

The nurse was super apologetic when I called up to find out what the heck was going on (as I had been told I would probably have it yesterday or today but hadn't heard anything) and she's basically spent the whole afternoon trying to find out if she can just give me the damn injection already and work out where the next one is coming from afterwards.

There is no question that the NHS wants me to have this drug. It's the drug I need, I've had it before, plenty of other patients with my condition have had it before, it works, the licensing issue is really just a wrangle and they reckon the drug company is hoping to get it licensed for TSHoma soon anyway. All the people actually involved in my care want me to have this drug as soon as possible because being this thyrotoxic is Not A Good Thing. But no-one wants to pay for it. Which is ridiculous because it's public damn money. If the hospital pays for it, if my GP's pay for it, it doesn't matter - the net effect on the public purse is exactly the same.*

So please can I just have the damn injection already?

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*Although in fact, it would probably be cheaper to the NHS overall for me to have it administered by a nurse at my GP's practice rather than an expensive and specialist endocrine nurse at the hospital whose time is probably more valuable.**

** And more expensive if my thyroid gland goes into overdrive while I'm hanging around waiting and sends me into a coma.***

***Very unlikely but actually not entirely impossible.