My latest check-up with endocrinology

So I made it to the hospital on Thursday for my appointment, and it went about as well as I could have hoped for. First stop: getting weighed (58.4kg). Second stop: blood pressure, resting and standing (both totally normal - a good sign as when I'm taking propranolol it's often very slightly low). Third stop: a comfortable chair in the waiting room for an hour.

Just as I was starting to think that I might actually have been forgotten, my endocrinologist swooped in. It was a pretty quick appointment really. My blood tests look good. I had a good response to the synacthen test and can stop taking hydrodortisone (if you don't understand all this medical terminology, in short: that is good!). All my thyroid hormones are solidly in the normal range - including the alpha subunit. The alpha subunit (a.k.a. chorionic gonadotropin alpha) is a protein. People who have TSHomas/thyrotropinomas often have an unusually high level of it in their blood. The normal range of the subunit in blood tests is below 1. When my blood was first tested for the alpha subunit, I think my level was about 13. My most recent test showed it at 0.95 - not only normal, by far the lowest it's ever been for me. Even after my first surgery it was around 5 or so.

So thus far, everything looks good and they don't want to refer me for radiotherapy. I don't particularly want to have radiotherapy, so that is excellent news. My MRI shows scar tissue, but nothing that looks like residual tumour, and my pituitary gland appears to be functioning normally despite two surgeries. Of course, if a few cells or a teeny tiny bit of tumour has been left behind, there's basically no way to tell unless it grows back, so the policy is just to watch and wait.

Next appointment is in six months. I had another round of blood tests and they kept some of my blood on ice for the various studies they do on TSH-secreting pituitary adenomas. I'll have another set of blood tests before the next appointment and see how they change. In the meantime, basically I just keep on keeping on!

Six Months post surgery

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

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

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

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

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

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

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

A Day in the Life of an Irregular Blogger

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

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

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

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

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

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

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.

Post surgery update

It's coming up on a week now since my pituitary surgery last Tuesday morning. This time last week, I went out to a meal with my boyfriend and parents, then headed home for some last-minute packing.

I seem to be doing pretty well so far (touch wood). Yesterday was fun, my boyfriend's parents came to visit which was really lovely, and I even made it outside in the snow very briefly. Normally, I am a keen maker of snowcreatures (my best effort to date being a snow walrus) so it has been very sad for me to not be able to take advantage of the weather.

Today is the first day I've not had an afternoon nap, though I'm mostly still alternating between lying on my bed and lying on the sofa downstairs. I think compared to last time I had surgery I feel a bit more awake mentally, but physically I'm still super pathetic. My brain is quite happy typing this all up, but my body is protesting that it would be so much easier to just lie down. Except then I get super bored.

In terms of medication, I'm taking hydrocortisone - that's standard after pituitary surgery as there's always a risk that the pituitary gland will stop producing adrenocorticotropic hormone after surgery, which could be quite serious. I have a nose spray and also (prepare for grossness) I have to rinse out my sinuses three times a day. It basically involves putting a bottle full of saline solution against one nostril and gently squeezing; the water then goes up one nostril and out the other. It is a very disconcerting sensation but it's actually really good. Last time I had pituitary surgery, no-one suggested this, but because I had endoscopic transsphenoidal surgery this time, an Ear Nose and Throat surgeon worked alongside my neurosurgeon, and he has instructed the sinus rinsing. The result is that I can breathe through my nose less than a week after surgery, which is a huge improvement on last time.

Pituitary Awareness Quiz: Day 10

Another day missed! Apologies. I do have an exciting update but I'm not sure I'm up to typing it all this evening. Consequently, I present today's super simple question:

Pituitary Awareness Quiz

Day 10, Question 10

Q.10: What hormone does my pituitary tumour overproduce?

a) Thyroid stimulating hormone

b) Thyrotropin releasing hormone

c) Thyroid hormone

Pituitary Awareness Quiz: Day 8

I received one incredibly excellent poem in response to yesterday's question, I thoroughly encourage you all to go check it out! (And remember; it's never too late to respond!)

Today's question will be rather more staid and run-of-the-mill, however it may require a little detective work to find the right answer. Equally though, you have a fifty-fifty chance of getting it right without doing the legwork! But if you get it wrong, you'll look kind of foolish right? Hmm... tricksy.

Pituitary Awareness Quiz

Day 8, Question 8

Q.8: I'm currently receiving monthly lanreotide injections. These are somatostatin analogues - hormone injections - which counteract the effect of my pituitary adenoma producing too much thyroid hormone.
Assuming this is the only medication I'm taking, and assuming I live in England... am I allowed to donate blood?

a) Yes

b) No

Pituitary Awareness Quiz: Day 5

Aloha! Today's question is rather late, I very nearly forgot to write it at all. Nearly... but not quite! The nice thing about doing this quiz has been that I've also learned things about the pituitary and its various hormones that I never knew before. And so, ladies and gentlemen, I present:

National Pituitary Awareness Month Pituitary Awareness Quiz

Day 5, Question 5

Q.5: Beta-endorphin is used by the body to numb pain, and is found in the anterior pituitary gland, as well as the hypothalamus. From the extracts of which species' pituitary gland was beta-endorphin first discovered?

a) Dolphin

b) Guinea Pig

c) Chimp

d) Camel

e) Owlbear

Bonus Question: How do you extract an owlbear's pituitary?

Growth Hormone and Creutzfeldt-Jakob Disease

It's National Pituitary Awareness Month, and I thought I should look for an interesting pituitary-related story to tell you all. As it turned out, I didn't have to look too far.

 Most people living in Britain today will remember the 1996 scare about "mad cow disease" or BSE (in cows the disease is called Bovine Spongiform Encephalopathy; when it's passed to humans it's variant Creutzfeldt-Jakob Disease or vCJD). It’s an extremely nasty degenerative brain disease, invariably fatal, and there was huge concern that beef contaminated with the disease had been in the food chain for some time. The illness can have a latency period of up to ten years before symptoms appear (or much, much longer according to some researchers), making it very difficult to trace the cause of the illness - and meaning that no-one has any definite idea how many people could have been infected. As of October 2009, there had been 166 identified cases of the illness in the UK.

Beware! This could be a mad cow.

It was a huge scandal in the UK, and I remember as a child being disappointed that I wasn't allowed to eat roast beef for what felt like a very long time - although admittedly this was less because I loved roast beef and more because I loved the accompanying Yorkshire pudding my mum served with it. But until recently I was not aware of a similar, albeit smaller-scale scandal that had occurred several years earlier.

Between 1963 and 1985, the US Government funded a programme which provided human growth hormone to children across the US who had failed to grow as expected. Failure to grow in children is sometimes due to a deficiency in growth hormone (surprise!) and this is still a treatment for children today; the difference is that these days it's made in a lab, while at that time it was extracted directly from the pituitary glands of human cadavers.

In 1985, it came to light that three of the people treated with human growth hormone (hGH) had gone on to die of Creutzfeldt-Jakob Disease. This is not the same illness as vCJD but it is similar - and it's very, very rare. The programme was stopped immediately and an investigation launched.

To date, 29 of the people treated with hGH in the US before 1977 have been diagnosed with CJD. That's about one in 95. The rates were much higher in some other countries; in the UK, which produced its own hGH, 64 of the 1849 people treated developed CJD; and in France, which also produced its own hGH, 119 out of 1700 patients went on to develop the disease. There have been cases reported in numerous other countries; the variation in incidence is likely due to the variation in the way the hormone was extracted and processed.

 The longest latency period recorded between someone receiving human Growth Hormone and going on to develop CJD is 38 years. The shortest period before developing symptoms with these kind of diseases is usually around 2 - 3 years. The symptoms progress very quickly, within just a few months, from dizziness, difficulty balancing and clumsiness to memory loss, seizures and death.

Most disturbingly of all, however, it later came to light that far more of the patients who had been treated with hGH went on to die of adrenal crisis - an entirely treatable problem - than of CJD. This problem isn't caused by the hGH treatment, it's simply the case that people with a growth hormone deficiency are more likely to also be deficient in other pituitary hormones, such as ACTH. Without sufficient ACTH, you will die - but safe and effective hormone replacement is available for people whose bodies don't produce enough ACTH. It's simply that their doctors failed to pick up on the fact that these people were ACTH-deficient until it was too late.

Denied

My god! Apparently I haven't published a post since the 31st of August and it's now the 8th September! I am well behind schedule. In fairness, in the past week I have been to a wedding, started a new job and moved house so I feel like I have some kind of excuse for my laxness. On the other hand, excuse schmoose! Shame on me.

I do in fact have an update on my health situation, although not a particularly jolly one. Regular readers will remember that the NHS is proving remarkably loath to pay for the treatment that fixes me. I need regular injections, one every month, which normalise my hormone levels and make me feel much more chirpy, and also possibly stop the tumour growing which would be A Good Thing. They also cost about £750 a pop.

I got the first injection just over a month ago. The hospital then had a month to wrangle who was going to pay for the next one. I was booked in to go back on Wednesday morning for the next injection. Surprise, surprise, on Tuesday afternoon I got a phone call from one of the nurses informing me that they had not sorted out the funding issue and it would be "one or two weeks" before I could have the next one. Past experience would suggest that "one or two weeks" could be anything up to several months.

It's very frustrating, because the injections make such a difference to my symptoms. I massively cut down on the amount of medication I was taking for my heart, to the point where some days I didn't need it at all. I was sleeping better, my nails were better, my eyelashes got thicker (weirdly when my thyroid hormone levels are too high they tend to thin out!), everything was improving. And now I just have to wait, slowly feeling worse and worse all the time.

It's hard not to feel annoyed at my new GP for starting this whole mess by refusing to prescribe it despite letters from the hospital asking her to. I know that she was just playing by the book. But if the tumour in my head goes untreated and keeps growing and makes me more ill it's just more hassle for the NHS in the long run. I really don't care who pays for it. But can SOMEONE please get it sorted?

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.

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.

The Very Scary Case of Kane Gorny

Before going into hospital last Tuesday, I stopped off at one of my favourite cafes for a hot chocolate, as a pre-hospital treat. I wasn't allowed caffeine in the three days before going in, so I had been suffering from a woeful lack of hot drinks. I got my hot chocolate (which was delicious) and sat down by the pile of daily papers they keep at the café. Alas, all the more upmarket titles had been taken, so I had to settle for that peculiar bastion of journalistic achievement: the Daily Mail.

You can imagine my feeling of ill-omen when, immediately before going into hospital overnight for further investigations into my pituitary tumour, I saw that the Mail's headline story was about Kane Gorny, a 22-year-old with a pituitary tumour who died of dehydration in hospital after nurses denied him his medication.

You can read the Mail's story online here. According to the Mail, it seems that after his entirely routine hip replacement surgery, nurses did not give Mr Gorny medication necessary for fluid retention; he became so agitated from dehydration that he called 999 in an attempt to get some water, but was sedated and left unattended overnight, despite his mother raising concerns. Even after his death, the attitude of some members of the nursing staff appears to have been appalling.

I thought I would tackle a couple of questions raised by the reporting on this terrible story, before moving on to look at it as a whole:

What was wrong with him?

 Kane Gorny suffered from a pituitary tumour; that much is certain. The exact details of Mr Gorny's condition are still somewhat sketchy and vary depending on which paper you read, but I'm going to guess that he possibly had acromegaly or Cushing's Disease, from the statement of his endocrinologist that he had a "rare tumour", and the fact that he had joint problems.

Most papers have reported that he had a "malignant" brain tumour or "brain cancer". The tumour may well have been cancerous, but it should perhaps be noted that this extremely rare for pituitary tumours; they are sometimes misreported as malignant due to journalists misunderstanding the condition and the fact that a tumour labelled "benign" may still be very harmful. In any case, I'll be looking at the definition of malignancy/cancer with regard to pituitary tumours in a future post, hopefully within the next couple of weeks, because it's an interesting question.

Why did he need a hip replacement aged just 22?

After pituitary surgery, sometimes the healthy pituitary gland is damaged, leaving it unable to produce certain hormones, including ACTH (adrenocorticotrophic hormone), which stimulates the adrenal glands to produce the steroid hormone cortisol. Without cortisol in the body, you can die quite quickly - consequently, it is standard to give patients steroid pills after surgery until doctors are certain their pituitary gland is able to produce ACTH. If the pituitary gland has been damaged, patients will need to take these pills for life.

Most reports have stated that Mr Gorny's steroid treatment left him requiring a hip replacement; high levels of steroids in the body can lead to avascular necrosis (although not in "a couple of weeks" as one paper initially reported). Additionally, if he did indeed have Cushing's or acromegaly, both of these conditions can adversely affect joints.

How did he die of dehydration so quickly?

A healthy human can live for a couple of days without water, depending on exertion and environmental conditions. Kane Gorny could not. After his pituitary surgery, Mr Gorny was left with diabetes insipidus. This is a very different condition from what we refer to as "diabetes" (diabetes mellitus) and is caused by a deficiency in anti-diuretic hormone (ADH, or vasopressin). Anti-diuretic hormone is secreted by the pituitary gland and helps to control the body's fluid balance. In diabetes insipidus, the lack of this hormone means that the body cannot conserve much of the water which it takes in, and consequently the sufferer becomes extremely thirsty and needs to urinate frequently. Unfortunately, developing this condition is a fairly common side-effect of pituitary surgery and pituitary radiotherapy.

In order to treat his diabetes insipidus, Kane Gorny would have needed to take a drug called Desmopressin (DDAVP), which is a synthetic substitute for vasopressin. As long as he was taking this drug, his body would be able to retain a normal amount of the water he drank, and he would not become dehydrated. When the drug was witheld, his body could not remain hydrated, and he died.

How could the hospital get this so wrong?

Unfortunately this is the question that can't be answered. Kane Gorny's death appears to have been preceeded by a number of absolutely catastrophic blunders at the hospital. His endocrinologists were not informed that he was in the hospital for surgery; his surgeon was entirely unaware of his condition; nurses did not read his notes; no-one listened to his mother's concerns; the list goes on.

Diabetes insipidus is a common problem among pituitary patients, but far more rare in the general population. Endocrine and neurosurgery nurses would likely be familiar with the condition, the importance of the medication Mr Gorny was taking, and the crucial need to monitor his fluid balance. The nurses actually looking after him knew almost nothing about it.

It's a sad fact that there are a hell of a lot of medical conditions in the world. Patients with diabetes insipidus or the inability to produce steroid hormones are encouraged to wear MedicAlert jewellery to alert paramedics and medical staff to their conditions in case of emergency, yet it seems even when medical staff have access to full notes on a patient they can go unheeded. 

Sometimes it gets frustrating when you're in hospital or go to the doctors and are asked for the thousandth time to explain what's wrong with you. In the future I'll try to be more grateful that someone is checking...

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Kane Gorny's brother is fundraising for CLIC Sargent. You can donate here.

Hyperthyroid Patients, Unite!

Subtitle: You have nothing to lose but your goitres!

So here's the strange thing: I have a TSHoma - a pituitary tumour which secretes TSH (thyroid stimulating hormone). It's super rare. According to my endocrinologist there are maybe thirteen or so other people in the UK with this condition which, in a population of 63 million, is Not Very Many, although it probably does go largely underdiagnosed; I had my first symptoms when I was around 16 or 17 and didn't get a diagnosis until I was 22.

But anyway, the point is that it can sometimes almost feel like two separate conditions; I have the pituitary adenoma, and the hyperthyroidism it causes. My symptoms, apart from the odd nasty headache, are pretty much exclusively those of hyperthyroidism; my treatment is for the adenoma. Consequently, although I am in all seriousness a paid-up member of the Pituitary Foundation and can chat about transsphenoidal surgery and lanreotide injections with the best of them, I'm missing out on the chance to bitch and moan about sinus tachycardia and getting the shakes with other people whose blood has turned to delicious thyroid hormone stew. More fool me!

People with excess thyroid hormone usually get that way from either a) taking too high a dose of thyroxine medication (exogenous thyrotoxicosis), or b) something else. The former can be dealt with simply by reducing the dose. The latter is more complicated. Possible causes include:

Graves Disease - the most common cause of hyperthyroidism, Graves is an autoimmune disease which can be treated with anithyroid drugs, surgery to remove part or all of the thyroid, or a dose of radiactive iodine. After such treatment there's a substantial and ironic risk of hypothyroidism - i.e. not having enough thyroid hormone.

Tumours of the thyroid gland - thyroid adenoma is a benign tumour of the thyroid gland which may secrete large amounts of thyroid hormone, while thyroid nodules may be benign or malignant and again may or may not release thyroid hormone - in some cases they may actually inhibit its production, causing hypothyroidism.

Thyroiditis - inflammation of the thyroid gland. Although this often initially leads to high levels of thyroid hormone being released, it usually progresses to thyroid disfunction with the gland unable to produce sufficient hormones, and ultimately causes hypothyroidism. Around 7% of women experience temporary thyroiditis after giving birth (postpartum thyroiditis) which may lead to hyper- or hypothyroidism, or both; this usually resolves itself.

TSH hypersecretion - super rare, but usually caused by a pituitary adenoma (hurrah!). However, I believe there is also the possibility of a tumour in the hypothalamus causing excess Thyrotropin Releasing Hormone and hyperstimulating the pituitary gland to overproduce TSH, which in turn would hyperstimulate the thyroid gland to overproduce thyroid hormone. Again, it's very rare.

I guess really I should be grateful for this, as effectively I have two health conditions for the price of one. This blog is usually focussed mainly around the dramatic "there's a tumour in my head!" aspects of my pituitary adenoma, and poor little hyperthyroidism barely gets a look in, except for when I complain about my tachycardia/hair falling out/absurd appetite issues. But no longer! From now on I vow to go on about hyperthyroidism more. So you guys will get two lots of whingeing for the price of one!

Progress!

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

Good news!

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

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

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

A Lesson From My Former Landlady: Part 1

I was originally going to name this post something else, but in deference to my readers who have delicate constitutions, I decided against it. Anyway. While it will be something of a massive rant, it's actually a good way of illuminating a topic that I've been wanting to write about for a while.

***

So for about eight or nine months from last summer, I lived as a tenant in a house occupied by my former landlady and her two children, who split their time between her house and their dad's. My former landlady - let's call her crazy bitch June - gave me notice in January that she'd need me to move out in June because she wanted to redecorate the room I was in. This seemed a suspect excuse, as my room was the only part of the house not in need of decorating, but no matter; I didn't have the chance to discuss the issue with her because she took the rather peculiar decision not to tell me in person, but to wait until I went on a weekend away and then slip a note about this under my door. I started to look for a new place almost immediately, because I knew I would have exams in June and didn't need the stress of moving out at the same time.

In March, I found a lovely new house nearby and gave her my notice. She said that this was fine as it didn't matter to her when the room was redecorated. I tried to organise a time to go through the inventory and get my deposit back, but she was strangely cagey about it. I offered to go through it with her on the day I was moving out, having just cleaned the room with my mum, but she refused. After moving out, again I kept trying to arrange a time to go through it all with her but she continued putting me off until I suddenly received a text message ultimatum that it had to be on that Friday (a day which I had already informed her I wouldn't be able to do) because she had someone moving in the next day.*

I spoke with my manager and was able to leave work early that day in order to go and see her, despite the fact that things were super busy that week and I knew that I would have to work over the weekend to make up the time I lost by leaving early. So off I trotted to my old house.

The instant I got there, things seemed strange. I was let in, but although I had explained to June that it was an awkward time and I would be in a rush, she seemed surprised that I was in a hurry and she stomped upstairs, obviously in a bad mood.

June was always a shouty woman. When her kids were staying, there was shouting every evening - about eating dinner, about singing lessons, about baths, you name it. What I was not prepared for, however, was for her to turn her shoutyness on me practically as soon as we stepped into my former bedroom. She pointed to a laughably small build-up of scale on the bathroom tap and had a go about it - then when I pointed out that it had always been there, she claimed that if there had been scale on the tap, she would have written it down in the inventory. I pointed out that this was not the case, as there were various holes in the walls and floor, the broken curtain fitting etc. which were not in the inventory - seeing as the inventory is a list of the room's furniture, not a detailed description of every aspect of its decor. She yelled that the holes in the floor were "not the problem" and continued shouting, accusing me of allowing a terrible limescale build-up in the shower, "ruining" a bookshelf, leaving the room dusty, etc. etc.

She accused me of not cleaning the room at all before I left; I pointed out that a) not only has she actually seen me going upstairs and downstairs with mops and buckets and cleaning products on the day I moved out but I had also spoken to her about which mop she would rather I use to clean the floor, and b) because she refused to do the inventory on the day, obviously the room now had two week's worth of dust in it. Which only made her shout more. At one point, she yelled "Frankly, Emer, I don't believe you did any cleaning the whole time you were here!" Which is a bit of a bloody cheek coming from a woman whose kitchen was so permanently disgusting that a) it attracted mice** and b) my appalled yet kindly mother did some of June's washing up on the day I moved out just to make it less horrific.

By this time, all the shouting was really starting to stress me out; I was on the verge of tears. I'd been on the lanreotide injections for a few months, and the thing about them that I think I've mentioned before is that they really do make me a lot more emotional and easily upset, for some reason. I had never told June about the whole brain tumour thing or the injections or anything, because frankly I didn't think it was any of her business and it tends to make things awkward.

Anyway, I asked her (politely!) to stop shouting. She shouted "I'M NOT SHOUTING!" at me, then continued shouting. I was so stressed out by the whole thing that I was physically shaking and feeling sick, so when she told me she was going to dock me 10% of my deposit (apparently cleaning a tap costs £65 these days. I'm not sure she's doing it right) I barely even argued because I was so desperate to get out of there. I was still trying to stay calm but I was kind of furious at myself for being so easily upset, so when she continued ranting as she wrote out the cheque I said: "June, I really don't appreciate your attitude today; I made a real effort to fit in with your plans even though it was extremely inconvenient for me, I took time off work and you've been nothing but rude to me the entire time I've been here." Predictably, she started shouting again, threatened to rip up the cheque, blah blah blah.

When I left my former home (with the cheque, thank Christ), I got about four steps down the road before bursting into tears and I was still shaking by the time I got home, at which point I realised that I was probably a bit hypoglycaemic (occassional side effect of the lanreotide injections), ate a couple of biscuits and felt slightly less awful, despite the fact that I had just effectively paid £65 to run away. Fortunately my lovely boyfriend was visiting that evening and he made me feel a lot better, although the whole story made him kind of furious. I believe pissing through June's letterbox was mentioned, and to this day I slightly regret my decision to take the high ground there...

It seems pretty plain to me that June's plan right from the start - before I'd even vacated my room or she had seen it - was to get that money off me. The way she dodged my emails trying to organise it, and then suddenly demanded to have it on a day she already knew I couldn't do, indicates to me that she was hoping I would say I couldn't come, so that she could just arbitraily dock the money and send the cheque in the post without having to do it to my face. The way she avoided doing the inventory on the day I moved out when my mother was there as a witness, and her incredibly aggressive behaviour as soon as I stepped through the door all make it seem as though she was determined to get that £65 by hook or by crook.

That kind of behaviour isn't acceptable from anyone to anyone. Society might consider it rather worse for my landlady to try to intimidate me, a 23 year old girl than, say, a 46 year old bloke. Is that fair? No. Would she even try it on with a 46 year old bloke? Who knows? I certainly doubt she would have behaved in the same way if my boyfriend had been with me. And what about the fact that I'm sick? If June had known about my pituitary tumour, about the fact that I was on hormone treatment which made me feel emotionally pretty delicate and physically resulted in odd bouts of hypoglycaemia, would she have still done it? If I went up to her now, knocked on her door and said "Oh, by the way, June, just so you know - I have a benign brain tumour," would that change the way she felt about her behaviour towards me?

Because it shouldn't.

You can't always tell if someone is sick. Not every ill person has a wheelchair or a bandage or an obvious badge of their personal infirmity. Heck, even if you now them pretty well - even if you live with them - you might not know about it. Yet the default in society is to treat everyone as if they were well and make 'special allowances' for sick people - once they produce a medical certificate. There are plenty of people in the world who would probably be horrified to realise that the shop assistant they were a bit of a dick to yesterday has a brain tumour, or the slightly unhelpful telephone operator they're shouting at has just come back to work after going through chemo. We do these kind of things all the time - and I'm by no means claiming that I'm innocent of this, by the way - and yet, if we knew of the person's illness, or bereavement, or disability, we would never dream of treating them in that way. And the only way to get around this is by trying to treat everyone with as much respect as you can muster, all the time. And even when someone is behaving appallingly, you need to give them the benefit of the doubt, because you just don't know. And that is a really difficult thing to do.

Because here's the killer question: If I found out that June had just been told she had Huntington's, or MS, or cancer, would that change how I felt about her behaviour - even though it wouldn't excuse it?

Of course it would.

And that's why I'm glad we didn't go piss on her doorstep.

Well... mostly glad.

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* So much for "redecorating".

**Which June then killed, which seemed rather unfair. If she didn't leave food for them around all over the place, those poor mice would probably still be alive, frolicking happily in the compost heap.

5 Things Healthy People Miss Out On

Over at Cushie Bloggers for the month of April, some bloggers took part in the Cushing's Awareness Challenge during April; the aim was to blog about something to do with Cushing's Disease every day of April. Well, I don't have Cushing's Disease, and it's now May. But the Challenge includes a list of prompts and suggestions of topics for bloggers with Cushing's disease to write about, and it looks like a good list to me for anyone with a pituitary adenoma to co-opt.

So, my first post from the list is in honour of both Cushing's Awareness and TSHoma Cognisance. And in fairness, I strongly suspect that awareness of thyroid-stimulating-hormone-producing pituitary adenomas is even lower than awareness of Cushing's Disease...

I like to think I am a fairly optimistic and sunny person, so instead of going down the depressing route, I have decided to start with a post focusing on the awesome aspects of being sick. Presenting:

5 THINGS HEALTHY PEOPLE MISS OUT ON

Or: Why It Is Great To Be Me and Be Ill 

1. You always have an excuse.

"Excuse me, madam, but you would appear to have inadvertently stabbed this man".
"Oh, I'm so sorry officer, it must be my brain tumour playing up again. Forgive me."
"Not at all, my good woman. Please continue about your business. And get well soon!"

In fact, I never have stabbed a man, but I fondly imagine that were I to do so, this is roughly how the conversation with the policeperson would go afterwards. Having a tumour in your head is rubbish, but it's one hell of an opportunity to get away with doing what you want.

Want a seat on the bus? Mention the tumour.
Late for a deadline? Mention the tumour.
Want to freak out a stranger? Mention the tumour.
In detail.

2. Improved and terrifying knowledge of medical terminology.

You know, if I didn't have a pituitary adenoma, I would never have heard of adrenocorticotrophic hormone, let alone be able to pronounce it. And now, not only do I have an expanded vocabulary for actual words, but I know the abbreviations too. I know that my form for TFT bloods will check my TSH, FT3 and FT4 - plus usually my endocrinologist requests SHBG and alpha subunit. Because that is just how he rolls.

3. A warm and fuzzy glow about UK taxation.

You know what I don't mind? When, at the end of the month, my paycheck is shrunk by several hundred pounds thanks to paying tax and National Insurance contributions. You know why I don't mind it? Because one monthly dose of lanreotide costs more than twice what I pay in tax. And that's not including the costs of my regular visits to the doctor, the nurse, the hospital, my other prescriptions, my MRI scans, my surgery, my blood tests.

I can't imagine how horrendous it would be to have to pay for this stuff in a country without a decent national healthcare system.

4. Joie De Vivre

It sounds pretty cheesy to say that being ill gives you a newfound appreciation for life. That's because it is a cheesy thing to say. However, it is also true. The feeling of achievement when, after pituitary surgery, you manage to very slowly walk the ten minutes to the nearest pub is as satisfying as learning to play the tuba. Probably more satisfying, in fact. After all, I've never met a happy tuba player.*

5. Writing this blog

I would never in a hundred years have managed to keep up writing a blog this long (since last August… that's ten months!) if I had not been ill. No matter what topic I picked, it would surely have lapsed, just like every other diary I've ever attempted to write has lapsed, usually within about a week. But writing so often has been really good for me; it's improved my style, it's made me more comfortable with just sitting down and typing - and searching for Interesting Medical Facts of the Week has taught me a hell of a lot. And being ill is what has made me keep this up. I can't ever lapse for long, because there's always going to be something I want to complain about.

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*Disclaimer: I have never met a tuba player.

*Censored* (A Rant)

Oh god, I hate hospital administration systems.

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

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

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

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

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

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

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

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

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

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*Except obviously I was politer than that.

Ding Ding: Round Two

I had been holding off posting for a few days, not out of laziness,* but because I was waiting to find out the outcome of my hospital appointment last Thursday. And then it took me absolutely ages to type this up because, let's face it, it's dull and complex. For the last couple of months I have been largely in the dark as to the results of my blood tests and recent MRi scan, so I really had no idea what to expect.

What I did not expect was to find the television in the endocrine waiting room playing Cash In The Attic. This television has, to my knowledge, never previously displayed anything other than The Jeremy Kyle Show. I always assumed that the hospital trust had performed some kind of patient survey and determined that diabetics and people with pituitary tumours prefer their televisual experiences to involve shouting, paternity testing, and the phrase "Madam, you disgust me".

I digress.

First up, as per usual, I was weighed (lost: one kilogram since February, almost certainly due to forswearing chocolate over Lent rather than the TSH-oma) and had my blood pressure taken (standing blood pressure: 118/76 - score! It would appear that switching my heart medication back to propranolol has made a difference). Then I had a quick review with one of the endocrinologists about how my symptoms have changed since being on lanreotide injections (not much).

Then the doctor ran away and eventually returned with two other endocrinologists in tow, who all stood at the other end of the room and surveyed me like something interesting they'd found in a jar at the Hunterian Museum.**

They have been somewhat confused by the fact that my levels of various thyroid hormones have remained roughly the same since being on the lanreotide injections, despite the fact that you would expect them to drop.

Additionally, the MRI scan of my pituitary was a little tricky to interpret. Essentially, the pituitary gland is like a tiny upside-down lollipop just below your brain. The stick of the lollipop is called the infundibular stalk*** and it connects the pituitary gland to the hypothalamus. My original MRI pituitary scan showed a great big gobstopper lollipop with a dark patch of necrosis in the middle, where the tissue inside the tumour had died off a bit. To picture this, first imagine a lollipop with a liquid centre, and then imagine something a lot more disgusting. But my latest scan shows a rather more normal-sized lollipop which hasn't grown since my surgery (hurrah!). However, the stick of the lollipop is slightly bending to one side.

Given that there's limited space inside your head for these things to grow, a wonky pituitary stalk can indicate that the bulk of a tumour is pushing the rest of the pituitary gland to one side. So the area of pituitary gland on the left-hand side is now under suspicion. I have to say, looking at the scans was kind of awesome, because it's not like when people show you the ultrasound of their baby and you have to pretend you totally see what they're talking about. I actually could see what they were talking about.

But the problem with MRIs is that they can show you what's there, but not what it's doing. So although it looks like there's probably a bit of tumour left on one side of my pituitary gland and that may well be what's still causing my symptoms, it's still possible that it's not that bit at all. And it would be rubbish to have surgery, take that bit out and then discover it was actually healthy pituitary tissue.

So my doctors want me to have two combined PET/CT scans. PET (Positron Emission Tomography) scans are super colourful and pretty, but that's not the only reason they want me to have one (I hope).

PET scan of the brain

 Basically, PET scans can show those areas of the pituitary that are most metabolically active. Inactive areas are dark. So the idea is that I will have one of these scans while not on any kind of medication, which should show the whole pituitary lit up like a christmas tree, and then have another scan after three months on a higher dose of lanreotide, which should suppress the hormone production in the TSHoma. Any areas that go from being bright blue on the first scan to being dark in the second scan are probably tumour. Then, if the tumour is in an easily-accessible area of my head, I might have surgery again. If it's somewhere tricky to reach, I'll probably just continue to have regular injections of lanreotide indefinitely.

So I'm not having any more lanreotide injections for six weeks, so that it's definitely completely out of my system. And in the meantime they want to have me come in overnight one for some research tests on my metabolism and things. Essentially the hospital are collecting patients with pituitary tumours that produce TSH and studying us, so I am now officially a guinea pig.

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*How could you ever think such a thing?

**I'm joking, they were very nice.

***Or just the pituitary stalk, but you don't get to use a word like "infundibular" every day.

Top Tips for People About to Have Pituitary Surgery

Before going into hospital for your transsphenoidal pituitary surgery, you will be anxious. You will have questions. Many of them will be answered on legitimate medical sites elsewhere on the internet, so instead of regurgitating the same old advice ("Don't sneeze after surgery or your brain will shoot out of your nose", "Warning: after they've drilled through your head, it may be a little sore"), I have decided I will go down a different route, and write down the more obscure things that I wish I'd known before heading into hospital.

Consequently, I present my top tips for people about to have pituitary surgery:

1. Shave your inside elbows.
"She's gone mad," I hear you cry. "She's raving. It was probably the brain surgery that did it."
In fact, this is an entirely logical step because of all the blood tests you'll undergo after your pituitary surgery; you're basically going to be a human pincushion for a couple of days as the doctors seek to keep a very close watch on various hormone levels. This means that the post-blood-test strip of tape and cotton wool that the phlebotomist sticks over your inside elbow is going to get ripped off repeatedly, and then stuck back on. And then ripped off again, along with much of your arm hair. After the sixth time this happens in one day, you'll be wishing you looked like this.

2. Drink enough.
If this seems obvious to you, then presumably you're a normal person who gets thirsty when you haven't drunk sufficient amounts of water to keep yourself hydrated. However, I am an odd sort of person and I only really get thirsty when it's hot or I've done exercise. If neither of those conditions have been met then I can go for hours and hours without drinking and not even notice; even back when I was a teeny child, my mum would tell me off for not drinking enough.
Compounded with the fact that I don't like water, this was slightly problematic in hospital. Because of the risk of pituitary surgery inducing diabetes insipidus, your fluid balance is monitored carefully and if you're not drinking enough to keep yourself hydrated, they will put you on a drip. This is rubbish. Therefore if you don't like water, keep a supply of tastier drinks at hand. And by "tastier drinks", I mean RIBENA.

3. Always eat the custard first.
Hospital food gets a bad rep. The food at my hospital was pretty tasty really, and there was a good selection. But for some obscure reason the dessert was often served before the main. If you waited for your main meal to rock up before eating, your custard would congeal disconcertingly by the time you got to it.
So remember: you've just had brain surgery. Screw societal norms regarding the "correct" order in which to eat sweet or savory comestibles!

4. Make your visitors play musical chairs.
Again, this may initially seem nonsensical. But I was fortunate enough to have a fair few visitors in hospital (thank you guys! <3), which was lovely. However, for the most part they sat in the same chair on the left-hand side of my bed, and consequently by the end of my stay in hospital I had done my neck in from continually turning my head to the left. It was pretty painful and entirely my own fault. Make them alternate sides.

5. Get wheeled out in a wheelchair.
Because a) you'll be feeling rubbish and won't want to walk, and b) it's fun!

6. Steroids + morphine = surprisingly fun.
After waking up from surgery, initially I felt rubbish. The nurse at hand quickly gave me some morphine. By the time I was properly awake, I was pain-free, wired, and weirdly delighted that the nurse had the same first name as my mum. They took me out of the post-surgical care room and up to the main neurosurgical ward, and about half an hour after I woke up I was already texting various members of my friends and family and talking nineteen to the dozen about how unusually chirpy I felt.

7. Play your "brain surgery" card.
I regret not doing this more, in retrospect. I have no doubt that there are hours of fun to be had in pretending not to recognise household objects, friends, family, political systems and/or branches of philosophy.
I remember speaking to one friend a few weeks after my brain surgery, and I mentioned that I was always forgetting where I'd left my books. She gave me a sorrowful look and whispered, "Is that because of the surgery?"
It was disappointing to have to confess to her that no, I have in fact always been that stupid.

8. Get a free pill slicer. They are awesome.
After pituitary surgery you'll be put on steroid replacement medication in case the neurosurgeon accidentally removed your body's ability to make its own steroid hormone when required. Said pills can be broken into different-sized chunks so you can take, for example, a whole dose in the morning, half a pill at lunch, and the other half in the early afternoon. When I left hospital, I obviously looked too pathetic even to break a tiny pill in two, because they provided me with a pill slicer. You put the pill in, shut the lid, and SHAZAM! A razorblade hidden inside will slice that bad boy in twain.

I managed to lose my pill slicer after a couple of months, and I still haven't quite got over it.