Appointment Time Tombola

Well hello there! Another pause in my updates, but this time a legitimate one - I was on holiday! The lovely boyfriend and I went glamping in Cornwall. We stayed in a yurt, it was pretty epic.

I had an appointment with the endocrinologists last Thursday. That sentence makes it sound so simple - but of course, before I could get to see a doctor I had to first negotiate the administrative no-man's land that encircles my endocrinologists as though they were a small patch of strategically valuable land just south of Ypres. Their administrative systems certainly appear to be about a hundred years old.

On my return from my holiday, I was expecting a letter from the hospital informing me that I had an appointment at the end of July. What I got was a letter from the hospital informing me that I had an appointment at the end of October. As I had just had a full round of blood tests in preparation for the putative end-of-July appointment, this seemed even more stupid than usual.

So, of course, I telephoned them. And discovered that the usual method of getting hold of anyone at the hospital (dial number; doggedly hold onto receiver while it rings 40~ times; hang up and try again later) had been changed to an even more infuriating system, whereby the phone will only ring three times before you are transferred back to an automated message informing you that "This extension does not answer" and requesting that you dial 1 to try again, or 2 to leave a message. After three doses of this eerily robotic speech, I gave up and left a message. Like some kind of naïve idiot.

Obviously I didn't hear back from them, so I called again and again and after dialling 1 so repeatedly that I feared breaking the button, I reached a human. I introduced myself and mentioned that I had left a message. She said "Oh yes, Emer, I have your message right here actually." I said, "Ok, great."

Then there was a long pause.

Eventually she said "So, how can I help you?"

"How about by DEALING WITH THE ISSUE I CLEARLY EXPLAINED IN MY MESSAGE?" was what I did not shout at her, because I am used to this by now and understand that the endocrine admin staff believe that actually responding to messages dilutes the soul.

Anyway, I repeated everything I'd said and she informed me that a number of appointments for July and August had been pushed back to October (no, no-one deigned to explain why), and I could not possibly get another appointment before that date. It took quite a bit of arguing, and pointing out that I was currently taking a medication (hydrocortisone) which was quite possibly medically unnecessary but which I would have to continue to take until I saw an endocrinologist to get the results of my latest synacthen test, to get passed to the booking manager. Then I had to go through it all again but eventually she offered me a cancelled appointment in two days time.

I had intended this post to be about the results of that appointment, but it looks like we'll have to save that joy for another day. I do feel a great sense of post-rant relief however! Phew!

October's Injection

I went to the hospital on the first of October to have my latest lanreotide injection. It feels like ages ago now! They're a long-acting formulation, so they last for about four weeks in your system, meaning that the next one is due on or around the 29th October. Of course, I don't have a date or an appointment to get the next one. That would make life far too easy!

I have slightly begun to wonder whether the hospital has enrolled me in some kind of secret government trial without my knowledge and against my will, where they gradually increase their level of administrative incompetence every month, and see how long it takes before I start frothing at the mouth.

Anyway, I went for the injection and dragged my boyfriend along to the hospital with me, to keep me company during the (usually fairly lengthy) wait. Of course, this was the one time that there was virtually no hanging around, and I was whisked away into the endocrine nurses' lair almost as soon as I arrived. I did request that he get me a coffee while he waited - but as he is not a drinker of hot caffeinated beverages, he became overwhelmed by the variety of -accinos on offer, and consequently I had to buy it myself afterwards. So I decided to publicly shame him on this blog. Friends and family, be warned.

The injection itself wasn't too bad, I'm not going to repeat my usual "sweet jesus guys it's a MASSIVE FREAKING NEEDLE" post (oh wait; yes I am. It's HUGE). The nurse giving me the injection was very apologetic and really somewhat incensed by the delays that I'd had in trying to get it - apparently not only had it taken longer than usual to garner various signatures because everyone had been on holiday, but they also managed to lose the paperwork at some point. Ah, the NHS at its finest.

The long and the short of it is that I'm pretty well determined to write a letter of complaint to the hospital, finally. I don't enjoy writing letters and I've kind of been putting it off, but I really should do it. As anyone who reads this blog regularly must be aware, I spend a frankly alarming amount of time chasing the hospital up about things they've promised to arrange and then entirely failed or forgotten to deliver - and aside from anything else, even ignoring their track history, it really can't be acceptable that patients' treatment is delayed by a month because a doctor goes on holiday. If I go on holiday from my [insert mystery job here] and something needs to get signed off, my colleagues can sign it off for me after checking my notes. I appreciate that medicine is a rather more high-risk calling than [insert lowly job here] but I refuse to believe that in hospitals across the country no-one gets treatment in August because half the doctors are sunning themselves in the south of France.

Post-hospital (and post-coffee) we trudged back to my house, limping slightly (well, I was limping). Unfortunately, having to go all the way to the hospital for these injections means much more walking immediately afterwards, and my leg is quite sore for a few hours. By the evening though, I was fully recovered and even went dancing, which was excellent!

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.

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.

Acromegaly Drug Trial - Oral Octreolin

I noticed on the Pituitary Foundation's website that a drug trial is recruiting for acromegaly patients. It's the phase 3 testing of oral octreolin, taking place at centres across the UK, including Oxford, Manchester and London.

This trial is a pretty exciting prospect! Currently, the somatostatin analogues which are used to treat acromegaly are only available in an injectable form, both as daily injections and in a long-lasting preparation that's injected once a month. This means regular visits to the nurse, plus all the hassle of ordering and storing the prescription, as the drug has to be kept refrigerated. Being able to simply take two pills every day would be so much more convenient (not to mention less painful... those needles are huge), especially for patients who travel or move around a lot.

The biopharma company carrying out the trial is Chiasma, a company specialising in turning injectable drugs into oral formulations. Octreolin is their lead product, but their website indicates they're also working on a drug to treat complications of chronic kidney disease.

It appears Chiasma are conducting clinical trials on the use of octreolin to treat neuroendocrine tumours. In addition to this and acromegaly, octreotide (the injectable somatostatin analogue that octreolin emulates) is used to treat carcinoid syndrome, TSHomas/thyrotropinomas and an extremely rare tumour called a VIPoma. VIP actually stands for vasoactive intestinal peptide, a hormone which the tumour produces in excess, but these tumours are so rare - estimated annual incidence of one per ten million people - that the other meaning of VIP is strangely apposite. A press release from Chiasma also suggested that octreolin was being investigated as a treatment for portal hypertension. So if octreolin is found to be as safe and effective as octreotide, it could benefit people suffering from a whole range of conditions.

A New Treatment for Cushing's Disease?

I've just been reading about a drug called Pasireotide. It's been around for a while, but on January 23rd this year, the European Medicines Agency's Committee for Medicinal Products for Human Use recommended that pasireotide be approved for use in the treatment of Cushing's Disease. This is exciting, because Cushing's Disease - in which a benign tumour of the pituitary gland causes the body to release excess steroid hormone - has long been very difficult to treat medically, with surgery and radiotherapy being the main treatments. But they're not always appropriate or successful for every patient.

Pasireotide (brand name Signifor, developed by Novartis) is a somatostatin analogue - like the medication lanreotide, which I take at the moment to prevent my own pituitary tumour from releasing thyroid-stimulating hormone. Like lanreotide and octreotide, the two somatostatin medications currently on the market, pasireotide looks likely to be effective in treating acromegaly and neuroendocrine tumours; unlike them, it appears to be much more effective at blocking tumours from producing adrenocorticotrophic hormone.

At the moment, there are no approved medicines in Europe for the treatment of Cushing's. Other drugs are used in practise, off-label, but with less data about their safety and effectiveness against the disease, so for Signifor to be approved would be a very significant step. The European Commission looks set to make its decision in the next few months.

Making The Drop

My Somatuline injection has been collected from the pharmacy (eventually; the poor pharmacist couldn't work out where it was for ages, because of course I forgot to mention that it would be in the fridge) and dropped off at the GP's surgery.

I have a great and enduring respect for medical receptionists, not least because two of my closest friends have worked as medical receptionists for some years, and there's no-one I'd rather have access to my private medical records. Nonetheless, every now and again one of the receptionists at my local GP's does cause me a certain amount of difficulty, which, I must emphasize, is no doubt due to her innate personality traits and not to her profession.

Disclaimer aside, the short story is that, despite my protestations that there was only one nurse at the GP's surgery who was trained to give me the injections and that therefore I should have the appointment with her, the receptionist booked me in to have the injection with another nurse because the first nurse was "away all week", insisting it would be fine because all the nurses are medically trained.* Against my better judgement, and despite saying that I would be happy to wait for the first nurse to return, I eventually gave in, knowing that if worst came to the worse, there are instructions inside the packet.

Fast forward to yesterday,when I went to drop off the lanreotide syringe at the GP's surgery; the first nurse happened to be in the reception when I arrived. On hearing that I was to have the injection with another nurse, she said she would have to explain the injection to her but more significantly was confused as to why I hadn't booked to have the injection with her in the first place seeing as she was only away for two days.

I was going to write up the long story, but I'm afraid it was even more boring.

In any case, the point is that next week my pituitary adenoma will receive a sudden shock when I have my first lanreotide injection, and I'm hoping that the symptoms caused by my pituitary tumor will finally subside. Here's hoping!
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*Of corse, this was news to me. I thought they were just people with a needle fetish who wandered in off the street.

Lies and Calumny

I am ashamed to say that, after my previous rant about the lengthy process I will have to undertake each month before getting my lanreotide injections, the pharmacy has wildly surpassed my expectations (and, to be fair, my previous experiences) at Step 4 of the spotter's guide to Somatuline injections, and got the syringe delivered one single day after I ordered it. That is pretty impressive! So I felt I should set the record straight.

Sadly, I will not be taking advantage of this to have my first injection early, as I'm already booked in to have it on Monday the 23rd; I've arranged to work from home for that day and the next so if I get horribly nauseous like last time I can continually munch on ginger biscuits. Plus, I'm going to a formal dinner on the 21st, it was expensive, they are serving DUCK (my favourite), and I have no intention of wasting good money and better food by feeling ill throughout! Hurrah!

A Weighty Matter

Traditionally there are two things you're not supposed to ask a woman: her age and her weight. This fact has led me to conclude that the staff at my local hospital are ill-mannered oiks, because every time I visit they demand to know my date of birth and promptly stick me on some giant hospital scales (I once had a go in a hospital weighing chair. It's just like a normal chair… except that when you sit in it, it weighs you. Surprise!). I am led to understand that they do this to everyone at the pituitary clinic, presumably because so many pituitary problems can affect your weight. Cushing's disease can lead to significant weight gain; acromegaly can as well, and thyroid hormone disturbances can have disturbing consequences for the waistline.

Before beginning treatment with lanreotide last January, I had presumably been hyperthyroid (ie. had too much thyroid hormone) for at least a year, given my symptoms. Hyperthyroidism is "supposed" to lead to weight loss, by affecting the metabolism; hypothyroidism (having too little thyroid hormone) leads to weight gain. In my case, though, this didn't hold true; I'd been hyperthyroid for a long time without weight loss, and in fact it was when treatment began to reduce my thyroid hormone levels that I started to lose weight, because I found that it reduced my appetite from "extremely peckish" to "normal person". It had never occurred to me previously that my appetite was unusually high* - but as it turns out, the hyperthyroidism caused by my pituitary adenoma was giving me an appetite which more than matched my raised metabolism. When I did begin to lose weight, the lanreotide injections may also have nudged things along, because they effectively turn off your gall bladder for a few days after each injection - the gall bladder stores bile, which aids in the digestion of dietary fats, so the lanreotide leaves the body less able to digest fats for a few days each month. Effectively it's an imbalance of the humors.

But anyway, the short story is that I've lost just about a stone over the last year, pretty slowly but steadily. A stone might not sound much compared to the stories of vast weightloss that WeightWatchers et al may peddle you, but it's over 10% of my bodyweight. That's quite a bit.

The pros of losing weight:
1. Being thinner!
2. More piggyback rides may be demanded from boyfriend
3. Getting to buy a bunch of new clothes

The cons of losing weight:
1. Having to spend a load of money on a bunch of new clothes
2. It worries my mother
3. Newfound paranoia about getting really chubby

Previously, I had never really worried about putting on gallons of weight,** but unfortunately the whole experience has underlined for me the fact that, if I can suddenly lose so much weight without trying, I could just as easily gain it, should my hormones decide they want to screw me over in a whole new way. That is a scary thought. Everyone always tells you that as long as you eat right and exercise you've nothing to worry about, and the cruel common wisdom is that everyone who's fat brought it upon themselves - but the fact is that's not always true; as I mentioned earlier, the symptoms of pituitary tumours often involve weight gain. People with Cushing's disease can eat incredibly strict rations and still put on a lot of weight; over the last year, I've experienced for myself how much even relatively small changes in thyroid hormone levels affect appetite, as well as weight and metabolism. Even right at the beginning of my lanreotide treatment, when my thyroid levels had only dropped slightly, my appetite suddenly crashed back to earth, and throughout the year it has noticeably fluctuated from month to month.

I'm really lucky that my weight change has, so far (and fingers crossed) been in an ok direction, but I can't help but worry that, should I need more treatment in the future, that might change; surgery and radiotherapy both have the potential to knock out my body's ability to produce various pituitary hormones and leave me hypothyroid rather than hyperthyroid

I now have a nightmare where I have to use the extra-large doors they have installed in the hospital for obesity clinic patients. I'm hoping that will only happen if 80's style shoulder-pads come back into vogue.

God forbid.

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*Well ok, it had, but I thought I was just extremely greedy.

**Well ok, I had, but only after watching the BBC's classic (and unspeakably horrific) programme Super Size Ambulance.

More Expensive Than Uranium

I have two GPs who I see on a semi-regular basis; both excellent medical men in their way, but both with certain personal quirks that turn my regular visits from dull routine into amusing interludes. The first,* Dr. Ken, has a curious habit of continually saying "mmhm, mmhm, mmhm, mmhm" whilst you speak to him (I have actually discussed this with another patient, so I know it's not just me).

Initially, I assumed he must have gorged on peanut butter before letting me in to his office, and the curious masticating noise was the sound of him trying to detach it from the roof of his mouth. I have since been forced to revise this view, however, and now my best guess is that at some point as a medical student he must have gone on some kind of "relating to patients" course and believes that frequent low-level humming noises are a soothing way of indicating his interest and concern, and not just extremely irritating.

My other GP, Boris, has never made any unexpected murmurs, susurrations, sighs, soughs or rumbles - which is to his credit. However, he does have a somewhat quirky sense of humour; last year, when receiving my regular blood test results, he gravely informed me I was pregnant and then burst into hysterical peals of laughter. Fortunately, due to a) being used to him and b) being extremely sure I was not, I did actually find it funny, but I imagine he needs to be careful precisely who he pulls that joke on.

Today I visited Dr. Boris to get my prescription for Somatuline Autogel injections, as agreed with my endocrinologist. He looked it up in his little dictionary of medicines, looked up at me and said, "Did you know this is more expensive than uranium?"***

Never having previously considered the price of uranium (as I am neither a nuclear scientist nor intent on causing mass terror) - and slightly concerned that my GP knew the exact cost of uranium yet had to look up my medication in a book - I asked him how he knew. Apparently the food critic, Giles Coren, recently wrote a bit of a rant about Pizza Express, in which he calculated that the price they charge for extra olives makes the olives, gram for gram, more expensive than uranium - which, I imagine, means that my lanreotide injections are significantly more expensive than uranium.

I can't guarantee that this story is true, and I foolishly didn't think to ask whether this valuation applied to enriched, depleted or farm-fresh newly-mined uranium. I can't look it up now, of course; I imagine that researching current uranium prices may well attract The Wrong Kind Of Attention. Probably just using the word "uranium" six times in one blog post is bad enough.

Anyway, I got my prescription and Dr. Boris instructed me that, should I be mugged whilst transferring the lanreotide injection from the pharmacy to the GP's surgery, I may hand over my purse and phone - but I have to fight them for the syringe.

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*I won't name them, obviously, as I have no wish to get sued. Let's call them Ken and Boris, for no reason other than that they are excellent names and that both my doctors have extreme political views at opposing ends of the spectrum.**

**N.B. this is a lie.

***I have cost the NHS an awful lot more than I've ever paid in taxes >.>

The Future's Orange...

...and not just because I've applied the wrong shade of fake tan.*

Yesterday, while working hard at work/deleting all the pointless emails I got over Christmas/eating the leftover Christmas chocolates brought in by a coworker, I received a phone call from the hospital.

This happens about once a month, and I have developed a clear routine on such ocassions, as follows:

1. Almost choke on my cup of tea in surprise
   i. Search for somewhere to put my mug amongst all the paperwork on my desk***
2. Scrabble frantically through my handbag to find my phone, whilst cursing either:
   i. my annoyingly raucous ringtone
OR
   ii. the piles of crap and receipts filling my bag and obstructing my progress.
3. Sprint out of the room into the corridor whilst both:
   i. answering the phone
AND
   ii. apologising to my coworkers for disrupting them
4. My endocrinologist says: "Hiya, is now an ok time to talk?"
and
5. I LIE THROUGH MY TEETH and respond "Yes, now is fine, no problem."

Anyhow, the phone duly answered, my endocrinologist informed me that he was calling because, having consulted with his colleagues about me, they have decided that I should start having injections of somatostatin analogue this month - specifically lanreotide (brand name, Somatuline Autogel). They will be at a lower dose than the injections I had previously (I was on 90mg, now I will be on 60mg), which hopefully means fewer side effects. I wasn't too badly affected last time, just had some stomach cramps and nausea for a couple days after each injection - but lanreotide's side effects can be pretty nasty, and I saw on the Pituitary Foundation's forums that some people on these injections have to go on a fat-free diet for the first week after each dose. I am hoping this will not happen, although perhaps I'm more likely to get side effects this time as my thyroid hormones are only slightly above normal, whereas previously they were decidedly eccentric. Interestingly, my endocrinologist mentioned that there's another somatostatin analogue formulation which tends to give people fewer side effects, so if I react badly to it there's the option of switching.

Of course, it all sounds so simple on the phone. "I will call your doctor," my endocrinologist said merrily, "then you can go for blood tests next week and have the injection."

Easy, I hear you cry!

WRONG

These injections are great because they fix me, but they sure are a hassle. Just as with answering my phone, there is an excessively complex procedure to follow before they can begin:

A Spotter's Guide to Somatuline Autogel Injections:

1. I go to my local GP's to get the initial prescription.
2. My doctor looks at me darkly and writes out the lanreotide prescription, muttering "oh my god, it's so expensive... so expensive..." and weeping gently into his rather ugly tie.
3. I take the prescription to the pharmacy and hand it over to the pharmacist, saying "I imagine you'll have to order this one in."
   i. The pharmacist gives me a patronising smile and says "No, no, I'll see if we have it in stock first".
   ii. The pharmacist looks at the prescription.
   iii. The pharacist's brow wrinkles deeply.
   iv. The pharmacist orders it in, saying "it'll probably be here in a week. I'll give you a call when we have it."
4. A week and a half later, the pharmacy calls.
5. I go to collect the lanreotide from the pharmacy (it comes in a pre-filled syringe, which I guess is handy).
6. I take the injection straight to the GP's, because it has to be kept refrigerated
   i. I explain twice to the receptionist why I'm trying to give it to her
   ii. Eventually, she accepts it and puts it in the practice fridge
   iii. The receptionist then stops me as I'm walking out of the door, crying, "Have you written your name on it?"
   iv. I point to the giant pharmacy sticker on the front of the box, listing my name, age, gender, address, GP's name, GP's address, bank details, sexual preferences and preferred pizza toppings
7. I am finally able to book myself an appointment to actually have the injection
8. Several days later, I return to have the injection, and several blood tests beforehand
   i. It is a GIANT needle, I mean literally, even the nurses comment on how giant it is
   ii. The nurse has forgotten to leave it out of the fridge to warm it up a bit, and consequently it's like having a stinging-nettle frappe injected into your hip
9. I go home and feel ill for two days
10. REPEAT PROCESS  

I realise this is the most whiney post ever about a treatment which hopefully should leave me feeling much better.**** In actual fact, I am genuinely quite looking forward to going on lanreotide again; hopefully it might finally stop my hair falling out, sort out my heartrate and generally leave me feeling both pinky and perky. I just wish the process of getting hold of it didn't involve three trips to the doctors and two to the pharmacy each month.

Interestingly, Wikipedia tells me that in the US, lanreotide is only indicated for the treatment of acromegaly; it seems to imply that it is only used against thyrotropic adenomas/TSHomas in the UK, although I don't know whether that's actually true; it's obviously a logical treatment choice, as somatostatins inhibit the production of thyroid stimulating hormone as well as growth hormone. As well as pituitary adenomas, lanreotide is also used to treat symptoms of neuroendocrine tumours; the kind of tumour that Steve Jobs suffered from.
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*Incidentally, I don't use fake tan. I am pale and interesting.**

**Well. One out of two isn't bad.

*** I have NO IDEA what most of the paperwork on my desk is. I inherited it from my predecessor and it was never explained to me. Consequently, I don't know if it's too important to throw away.

****Fun fact: when first typing this sentence something broke in my brain and it read "...an injection which should leave me stealing much better". Because at the moment, I am a rubbish pickpocket.

Let's Get Technical, Baby

Apologies for my lack of posting lately! I have been doing exams. They are now over, and my new excuse is that it's Christmas (in case you hadn't noticed). But, as of a phone call from the hospital on Wednesday last week, I have been meaning to give an update on my health. In short: my thyroid stimulating hormone levels are still normal, but I will have to start new treatment shortly... because I have high levels of the TSH alpha subunit.

"The what-now? What in god's name is that?" I hear you cry.

Don't cry.

My endocrinologists have always been cagey whenever I've tried to get them to explain what the alpha subunit actually is,* although in fairness, my shrewd personal judgement leads me to believe that this is probably less because it's a dark and terrible secret and more because they're not paid to teach biochemistry.

Anyway, the combined powers of Wikipedia and Google have provided me with the answer: it turns out that thyroid-stimulating hormone (TSH) is a dimer; a chemical compound of two identical or similar monomers: in this case, the alpha subunit, and the beta subunit. No-one wants to get bogged down in the detail, so at this point I promise not to use the word "glycoprotein" without extreme provocation.**

So: TSH is made of two kinds of stuff. And as it turns out, TSHomas (pituitary tumours which produce TSH) have a bit of a habit of producing more of the alpha subunit than would normally be expected. Normally you would expect the ratio of free alpha subunit to TSH to be less than 1. Before my surgery in April, my ratio of alpha subunit to TSH was 14:1. Currently, it's 7:1.

Obviously, 7:1 is better than 14:1. However, it is equally obviously Not Quite Right.*** Consequently it seems likely that the TSHoma is still active, and even though my total thyroid-stimulating hormone levels are within normal limits, it may still be secreting some TSH as well. Active tumour = growing tumour.

So I'm going to start having injections of some kind of somatostatin analogue again. I haven't really written about this up to now (it's on my list, promise) but for three months before my operation last year I was having monthly injections of Somatuline, the brand name for lanreotide. It's a synthetic form of a hormone naturally released by the hypothalamus,**** which inhibits the production of TSH and growth hormone, and which is used to treat pituitary adenomas which are releasing either one of those hormones. If you're lucky, it can shrink the tumours a bit - at the least, it should check their growth and can also help to make their structure less fibrous, which makes it easier for surgeons to chop them up.

It's also super expensive. When my GP first looked up how much it cost after my endocrinologist had requested a prescription, he laughed in a slightly manic way for about five minutes at the price. Awkward.

I'm going to start the injections again, probably in January, for three months, to assess whether they shrink the tumour at all and whether they bring down the high levels of alpha subunit in my blood. I'm not massively looking forward to starting again - the injections mess with your body a bit, last time I felt nauseous for three days after the first one, and they're a bit of a hassle because you have to order the injections a week in advance from the pharmacy, then drop them off at your GP's because they have to be kept in the fridge. The injections sting, they have to use a massive needle because the stuff is so thick, and you end up with a lump in your hip - basically it's injected under the skin where it sits and slowly decreases in size over the month as it gets absorbed into your system.

On the plus side, having these injections should (in theory) get rid of the last of my symptoms. And that would be very nice. I am really quite bored now of my hair falling out/heart randomly getting overexcited/headaches. As for what happens after three months, who knows. The injections are a possible long term treatment option although they are an expensive hassle and they're quite likely to give you gallstones sooner or later. So that brings you back to surgery/radiotherapy. Oi vey.

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*Apart from an excellent title for some kind of spy film.

**Incidentally, the α subunit is thought to be the effector region responsible for stimulation of adenylate cyclase

***I must stop using these technical medical phrases.

****Somatostatin.Lol.