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!

Pituitary Awareness Quiz: Day 9

Eagle-eyed readers will have noted that this is in fact Day 10, but I abjectly failed to write a question yesterday (though I did write a poem, which is nearly as good) so it's only question nine. I could have called this Day 10, Question 9, but that just seems confusing so I'm working on the basis that yesterday was just a small aberration in time and space, and the quiz will continue from here!

Pituitary Awareness Quiz

Day 9, Question 9

Q.9: Which of the below is the correct spelling of the full name of the pituitary hormone ACTH? (no cheating!)

a) adrenalcortecotropic hormone

b) adrenecorticotropic hormone

c) adrenalcorticotropic hormone

d) adrenocorticotropic hormone

Pituitary Awareness Quiz: Day 6

Yesterday's animal-based question proved wildly unpopular. So I thought I'd leave animal-based questions behind and go for a classic history lesson set-up!

National Pituitary Awareness Month Pituitary Awareness Quiz

Day 6, Question 6

Q.6: Only one of the following pituitary-related conditions was first identified by a woman named Cindy. But which one was it?

a) Sheehan Syndrome

b) Cushing's Syndrome

c) Addison's Disease

d) Pituitary apoplexy

Pituitary Awareness Quiz: Day 3

I have to say, I have been delighted almost beyond reason by the responses I have received so far! Today I seemed to spend a lot of my time making pies (apple crumble and puff pastry chicken pie with peppers), and playing boardgames (I don't even remember their names), it was excellent. But it left an unfortunately small amount of time for writing today's question. Nevertheless, allow me to present:

National Pituitary Awareness Month Pituitary Awareness Quiz

Day 3, Question 3

Q.3: Which of these is an alternative name for the pituitary stalk?

a) The fungible branch

b) The expungable peduncle

c) The infundibular stem

d) The peduncular pedicle

Nationary Pituitary Awareness Month Pituitary Awareness Quiz

Even the most ardent readers of my blog will probably have forgotten that October is National Pituitary Awareness Month. Oh yes, ladies and gentlemen - that happy time is here again! Try to contain your excitement, please.

Last year, I looked at some of the other National Months that are held in October; this year, I felt like doing something different. But pituitary glands are tricky things to raise awareness for, especially considering that approximately eighty percent of Britons can't even spell the word "pituitary", let alone point to its location in the body.*

And then it hit me.

Fortunately, I wasn't seriously injured.

Dear readers, it's been over a year since I started this blog. Some of you have been here from the start, some of you have joined me along the way, and some of you typed "piglets in a teacup" into Google and arewondering how the hell you ended up here.** Believe me, I'm wondering too. But I feel quite strongly that all of you should have increased, improved and frankly incredible knowledge of the pituitary gland as a result of reading this blog, and now you will finally have the chance to prove it. And so, I present: The National Pituitary Awareness Month Pituitary Awareness Quiz! It's not sanctioned by any healthcare professionals, and it's not recognised as a professional medical qualification anywhere, ever - but the winner will gain both bragging points, a delightful poem about how wise they are, and my eternal respect.

Here's how it's going to work: For the remainder of the month, I will post one (probably multiple-choice) question about the pituitary gland every day.*** To be in with a chance of winning, simply post your answer in the comments section. Correct answers gain you one point. At the end of the month, I will leave a day or so for anyone who wants to join in to answer all the questions, then I'll tot up the points and announce the winner and write a short praise poem about how awesome they are.

Here's the twist: correct answers gain one point. Answers (however wildly incorrect) which include something that amuses me - a pun, rhyming couplet, accompanying picture or just shameless flattery - will get two points. Because life's not fair, and neither is my pituitary gland.

If I get more than five comments before the end of the month, I will count this quiz as a wild success, so please join in!

National Pituitary Awareness Month Pituitary Awareness Quiz

Day 1 - Question 1

Q.1:  Acromegaly is a rare disease caused by a growth-hormone-secreting pituitary tumour, which can lead to gigantism and excessive growth of the body's tissues. But what language is the word "acromegaly" derived from, and what does it literally mean?

Is it:

a) from the Latin acro "extremity; member of the body" and magnus "large"

b) from the Greek arka "repository; hidden place" and megaras "growth".

c) from the Greek akros "highest; extremity" and megalos "large".

It's an easy-to-Google one to start you off. Fly, my pretties, fly!


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* Warning: spurious fact alert.

** This is actually a genuine search that somehow resulted in my blog
coming up. I have no idea why

***In theory.

IMFW: Scintillating Scotoma

Up until recently, I had never heard of scintillating scotoma, but my boyfriend is an occasional sufferer - and although that is not so fun for him, it's certainly a handy suggestion for an Interesting Medical Fact of the Week!

The word scintillating comes from the Latin scintillare - to sparkle, glitter, gleam or flash. The word scotoma comes from the Greek for darkness. So at first etymological glance, it would appear that a scintillating scotoma is something of an oxymoron.

Medically speaking, a scintillating scotoma is a symptom which often precedes the onset of migraine, although it can also appear as an isolated symptom without headache. Wikipedia describes it as follows:

Scintillating scotoma usually begins as a spot of flickering light near or in the center of the visual fields, which prevents vision within the scotoma. The scotoma area flickers, but is not dark. The scotoma then expands into one or more shimmering arcs of white or colored flashing lights. An arc of light may gradually enlarge, become more obvious, and may take the form of a definite zigzag pattern, sometimes called a fortification spectrum, because of its resemblance to the fortifications of a castle or fort seen from above. 

The visual anomaly results from abnormal functioning of portions of the occipital cortex, at the back of the brain, not in the eyes. Symptoms typically appear gradually over 5 to 20 minutes and generally last fewer than 60 minutes, leading to the headache in classic migraine with aura, or resolving without consequence in acephalgic migraine.

Sounds kind of pretty, right? Unfortunately, even if you don't get a headache or other symptoms, it does massively mess with your vision until it resolves. If you search online, you can see a selection of artist's impressions of what scintillating scotoma can look like to sufferers:

The Sound of Striped Hooves

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

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

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

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

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

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

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

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

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

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

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

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

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.