New blog at Mermaid & Ink!

Hi y'all! it's been a crazy long time since I last wrote on this blog. I've not given up on blogging completely though - I've recently started writing again, only this time I'm not just exclusively focusing on my health issues. You can find my new blog at www.mermaidandink.com, where I write about my work as a professional mermaid and performer, art, baking... and, of course, the magical world of pituitary tumours and weird medical oddities. I would love to see you there!

Acromegaly Community

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

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

The Sound of Striped Hooves

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

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

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

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

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

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

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

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

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

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

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

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

Lyrically Sick

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

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

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

First up we have:

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

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

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

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

Lady Gaga - Poker Face - Prosopagnosia

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

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

Katy Perry - E.T. - Capgras Delusion

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

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

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

Belated: Cushing's Disease Awareness Day

So it turns out that the 8th of April was Cushing's Disease Awareness Day, and I completely missed it. Not least because it was Easter Sunday, i.e. the first day I could eat chocolate again having given it up for Lent. It does seem cruelly ironic that the awareness day for a terrible disease, a key symptom of which is central obesity, should fall on a day that the rest of the world dedicates to filling their faces with fatty treats.*

Anyway, dedicated readers of my blog already know what Cushing's Disease is, but for everyone else: Cushing's Disease is caused by a tumour, known as an adenoma, on the pituitary gland. The tumour produces high levels of adrenocorticotropic hormone (ACTH) which can result in obesity, high sweating, hair loss, hypertension, diabetes, headaches, painful joints, and other not-so-fun symptoms. Treatment is chiefly through surgery and radiotherapy, as Cushing's is difficult to treat with medication.

There's a group of bloggers who suffer from Cushing's Disease who've been doing the "Cushing's Awareness Challenge", blogging on a different topic about their illness for every day of April. You can find out more about the challenge and read some of their blog posts by clicking here.

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*Well, I do anyway.

What Should I Blog About?

This is a question I frequently ask myself. Recently it occurred to me to use the Google AdWords Keywords search - which shows you the number of searches for particular keywords globally - to see how many searches are made every month for the different topics I write about on this blog. As you hopefully have noticed, I blog chiefly about my experiences with my rare tumour of the pituitary gland, which secretes too much thyroid stimulating hormone (TSH). This kind of pituitary adenoma is sometimes referred to as a thyrotropinoma, or a TSH-oma. But they're very rare, so I wondered - how many people are even looking for information about this online?

It's not looking good:

Thyrotropinoma: 28 searches per month.
TSH-oma: 480 searches per month.
TSH secreting pituitary adenoma: 170 searches per month.
Grand Total: 678 searches per month across the entire world.

So although no-one could deny that this blog has certainly found a niche in the market, it looks like my target audience is pretty minute. Hearteningly, searches for "pituitary adenoma" are much higher, so that may help. Plus, Blogger gives you a breakdown of the search terms that people used to find your blog, so you can see what searches are the most popular. It's an eclectic bunch; my favourites from the past week include "extreme fat men", "barber with no legs" and "can you get nigeri fowleri from picking your nose".

So in future I'm afraid those are the topics I'll be focusing on.

Anyway, this evening I'm off to the hospital for my latest MRI scan! Note that I use "latest" both in the sense of "most recent" and "overdue", as I was supposed to originally have it in February and they failed to book me in. Again. Nevermind! There's nothing I enjoy more than going for an MRI at 7pm at night. I didn't even know hospitals had outpatient appointments for scans that late in the evening!

Anyway, I shall be reporting back tomorrow...

Rare Disease Day 2012

It's Rare Disease Day 2012 on Wednesday 29th February, and I am almost as excited as I was for National Pituitary Awareness Month in October. The Pituitary Foundation is supporting Rare Disease UK, and you can find out more about the events on offer and how to get involved by clicking here.

Also, check out this list of 21 rare diseases compiled by the Huffington Post to mark last year's Rare Disease Day. Ok, so some of the conditions they list are really symptoms rather than illnesses in and of themselves, but clearly they've gone for the most sensationalist conditions out there, and more power to them. First illness on the list? Acromegaly/gigantism. Whoop whoop!

Health Update

My poor little blog is really looking quite neglected! Fortunately I had a trip to the hospital yesterday. To see a doctor, I mean, not just for fun.

After being weighed and having my blood pressure done, I was called in to see.... a doctor who is not my endocrinologist. My endocrinologist seems to be displaying classic signs of pathological demand avoidance syndrome, in that every time someone arranges an appointment for him to see me, he disappears. He's been my endocrinologist for seven months now and I've only met him once, in passing, while I was having some blood tests. Perhaps he's put off by the possessive way in which I refer to him as "my" endocrinologist, but if so then he really needs to address the problem, or how can our relationship progress to the next level?*

Anyhow, we went through my latest blood test results and, being the marvel of medical science that I undoubtedly am,** my body appears to have pulled off the neat trick of producing higher levels of thyroid hormone during treatment with a thyroid-stimulating-hormone suppressing drug than before treatment. Apparently they're not concerned, because the tumour does produce quite low levels of TSH anyway and all my thyroid hormone results are within the upper normal range, so the only way they can tell what's going on is to look at the alpha subunit, a particular protein which tends to be over-produced by TSH-producing pituitary adenomas. The test result takes 4 weeks to come through, so we have to wait to find out where I am at the moment. Over the last year or so, though, they were:

Before surgery last April: 13.00
After surgery: 8.40
This January: 5.90

What it's meant to be: 1.00 or less.

So it could be worse, could be better! Fingers crossed that the lanreotide injections are doing the trick. I get to have another MRI sometime soon (they forgot to book it in for me, apparently I was supposed to have one in February) and to go back in 2 months. Oh, and they recommended I be referred to the Ear Nose and Throat team for my stupid malingering post-surgery sinusitis. You know. The sinusistis my GP told me couldn't be related at all to the surgery... oh well. I get to explore another hospital department. Whoop whoop!

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*i.e. the level at which he is actually in the room when I am supposed to be meeting him.

**Shut up, I so am.

I Want Acromegaly

As many of you are no doubt aware, I'm the kind of sad and tragic person who has enough time in her life to trawl the internet for other blogs about pituitary adenomas. Due to a weird and extremely irritating Blogger glitch, I'm unable to follow anyone anymore, but I still seek them out.

And two separate sites I found today, both about acromegaly, got me thinking. They got me thinking so much that I suspect I'll have to split my thoughts out across a couple of posts, or risk literally boring my readers to death.

The first was this: a conversation on a forum begun by a guy who claims to want to have acromegaly.

Quick recap: Acromegaly is a serious illness caused by a rare brain tumour on the pituitary gland which releases growth hormone into the blood. It can cause uncontrolled growth throughout the body, especially the hands, feet, chin, nose, tongue and forehead. It can also cause impotence, congestive heart failure, kidney failure, diabetes, loss of vision, and death. It is a devastating diagnosis for those unlucky enough to have it.

I quote:

"I really want to have this condition. I want it because I have a "babyish" face and my facial bones are not as developed as they should be. I'd rather not get cosmetic surgeries such as chin impants and jaw implants. When my face becomes as masculine as I want it to be I'll just get treatment for it.

Also my hands are small for a mans and I'd like to have bigger hands.

[...] How can I induce acromegaly in my body? Is it even possible?"

This guy may be a genuine idiot, or he may be a troll, but the fact is that there really are people fuckwits out there who inject themselves with growth hormone because they think it will make them better at sports/bodybuilding.* These people are effectively giving themselves mild acromegaly, despite the fact that there is really very little evidence that it could improve sporting performance, and it may actually decrease stamina despite increasing muscle mass.

Those of us cursed with epic fail bodies that go haywire at the slightest provocation tend to strongly resent it when fit and healthy people take risks with their health and fitness for the purpose of vanity. When I was having the packing removed from my nose after my brain surgery, and it was incredibly painful and there was blood everywhere,** the first thought that went through my head was: "Why would anyone ever have a nose job by choice?" (Plus, as a person who regularly has health professionals sticking needles in me, I can't get my head around someone actually volunteering for human pincushion duty).

Going around saying that you want to have acromegaly to gain a better jawline is like saying you want to get cancer so you can lose weight. Not only is it incredibly disrespectful to those people who seriously suffer with a horrible illness, it's just incredibly stupid. Injecting yourself with growth hormone so you can stand on a stage with a bunch of other people and flex your muscles impressively... words fail me. Not only are you putting your body and your health at risk, but you're cheating. All the other hard work you did to get those muscles is wiped out. You didn't win because you happen to be the muscly guy who worked the hardest and had the best muscly genetics out of all the hardworking muscly guys with muscly genes; you won because YOU'RE A DUMBASS.

Actually got surprisingly angry writing this! My next post on the topic of acromegaly, Cushing's disease, and physical appearance is coming soon...

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*I recommend clicking on that link and scrolling down to the photo of the incredibly muscular man cuddling his pillow with his giant melon-packed arms, it's hilarious.

**In fairness, apparently it's not usually as bad as that, I just have a particularly objectionable nose. If you're squeamish, don't continue reading: The first time the nurse tried to pull the packing out, I asked "How badly will it hurt?" and the nurse replied "A bit." I am fairly good at dealing with pain usually, so I braced myself. She gave the packing a firm nug and it felt like my nose had exploded. I shrieked and she gave me a slightly unsympathetic look and told me I had to "get it over with". On the second attempt, she got the packing out, along with really quite a surprising gush of blood that went all over the floor. It hurt so much I was physically shaking and the nurse was forced to admit that it wasn't usually quite so horrendous.

Picture Me This

I have decided that what this blog is reallly lacking is pictures. As a graduate of the five-year-old-child school of picture-book thinking, I am pretty much certain that the ratio of writing to ANYTHING ELSE is skewed. This blog is VISUALLY DULL, and randomly writing phrases in capital letters will not help that.

I don't really have any exciting pituitary-adenoma-relevant pictures, other than maybe one of me in hospital with a big fat bloody nose right after surgery, and honestly that's a picture-book which the five-year-old child does not need to see. I don't even have a copy of one of my MRIs. But I am going to the zoo this weekend, so I guess I can always bring back a picture of a tiger...

Obviously I didn't take this picture, because it's actually good. Damn you, B_cool on Flickr!

Famous People with Cushing's Disease?

Being a blogger with a TSHoma (a.k.a. TSH-oma,* a.k.a. thyrotropinoma, a.k.a. a freak) has its pros and cons. On the plus side, as far as I can tell I have definitely found a niche in the market - no mean feat, given the number of enthusiastic and generally excellent blogs written by people with everything from diabetes to acromegaly. On the down side, there's none of that nice cosy caring and chit-chat over tea and lanreotide injections that you get from support groups with other people. People who understand how rubbish it is that your heart's going too fast/your hands have grown enormously/your nose just fell off. So being me, I have been ambling around the internet, happily barging into other people's support groups and demanding to be paid attention because I have a tumour on my pituitary gland too.

A little while ago I found the lovely Acromegaly Bloggers, and more recently bumbled across a blogging group for people with Cushing's disease, called Cushie Bloggers. People with Cushing's disease can at least console themselves with the fact that referring to themselves as "cushies" makes them sound incredibly cute and fluffy and generally charming.

But anyway, finding the blog and reading the experiences of some of the bloggers got me thinking: in an earlier post, I went on a hunt for famous people with pituitary adenomas. Obviously there were no cases of TSHoma/thyrotropinoma - that would be too much to hope for. But there's Russell Watson with his unspecified adenoma, and numerous celebs with acromegaly - even more than I included in my post, in fact: acromegalovelies are all over the shop, from Andre the Giant to Pio Pico.

But where are all the famous Cushing's sufferers?

I've found it difficult to find information specifically on the incidence** of Cushing's Disease, probably due in part to the fact that it's a subtype, as it were, of Cushing's Syndrome, accounting for about 70% of endogenous Cushing's syndrome cases. I have found the incidence of such new cases quoted as about 13 cases per million, so we're talking 9 new cases per million per year, compared to an incidence of 3 - 4 new cases of acromegaly per million, per year. So it is seemingly rather more common than acomegaly, although the massive tendency towards underdiagnosis of both illnesses (and TSH-omas as well) makes these rather shaky figures.

Given that it's relatively easy to find well-known figures suffering from acromegaly (even outside the field of sports, where young sufferers' large frames could be considered to give them an attractive advantage in sports like basketball or wrestling) and given that Cushing's is more common, you'd think it would be easier to find a celebrity with Cushing's. (You'd also expect to find people with prolactinomas, but I suspect that (particularly male) celebrities might prefer to generalise prolactinomas as "tumours" rather than publicly imply that they're leaking milk from their manboobs.) Celebrities diagnosed with Cushing's, on the other hand, are (I would have thought) surely be more likely to publicise their condition, to explain that any excess weight gain was not due to greed or laziness but a medical condition.

So where are they all? I've looked around the place and all I can find is a vague hint that Elvis may have had Cushing's syndrome (as distinct from the disease, Cushing's syndrome does not necessarily imply a pituitary tumour, but could be caused by steroid overdose or adrenal tumours etc). If true it would certainly be something of a PR coup for cushies, but one article in the Daily Mail is not much to go on. The Daily Mail seems to have a little bit of a penchant for Cushing's Disease (is there a sufferer amongst the editorial staff?) and I've also found an article suggesting that King Henry VIII may have had Cushing's Disease. Who knows? When it comes to historical figures, it's fun to speculate, but speculation is all it can remain.

The only - literally the only - modern-day sufferer I've found who comes close to the designation of "celebrity" is J. Jordan Bruns, an artist featured in this article - but he's not exactly a household name, lovely though his art is.

Come on cushies, come out from the woodwork!

UPDATE: If you're interested in reading about famous people who suffer from pituitary tumours, see my other posts looking at famous pituitary ademoaners here and here; my post about Russell Watson, the opera singer who had a pituitary tumour; or check out my post looking at famous women with acromegaly.
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*Never doubt the power of punctuation. If you search for the wrong one, Google will offer you Tshoki Tshoma's naked photos. Nice.

** I would prefer to write about prevalance but I've found it harder to find figures for that.

IMFW: The Burzinski Saga

Less an interesting medical fact today, more an interesting medical story. Are we sitting comfortably?

Then let's begin.

I was reading the Guardian today, as is my wont, and I came across this article about the interesting story of Rhys Morgan, a 17 year-old Welsh blogger. Rhys wrote a blog post about the Burzynski Clinic, a US cancer treatment centre. Keeping it brief, the Burzynski Clinic runs (non-randomised) clinical trials of a therapy for cancer, and it charges very sick people thousands of dollars for the privelege of taking part in these trials.

So far, so US healthcare.

But Morgan and other bloggers have pointed out that although these trials have been going on for decades, the National Cancer Institute website notes that no randomised controlled trials of Burzynski's treatment have been published, nor have other investigators been able to duplicate the results found by Dr Burzynski and his colleagues in earlier trials. The treatment is not approved by the FDA for the treatment or prevention of any disease, but people from the UK are raising hundreds of thousands of pounds to travel to the US to try this treatment, and these bloggers questioned that.

Unsurprisingly, the Burzynski Clinic repudiated these claims of unethical behaviour. For their trouble, Morgan and others were ineptly threatened with legal action by the Burzynski Clinic's former PR man (nice work), threats which they responded to in a dignified and thoughtful way. You can read Morgan's very interesting correspondence with the clinic here.

Why, God, Why?

Good morning world! Welcome to my new blog. I intend to use it to further the cause of all extreme right-wing politics, and particularly that modern-day angel Michelle Bachmann, who (I've been reliably informed) is probably sane.

I kid, I kid. It's actually about the tumour in my head (much more palatable now, huh?). There are five main reasons why I started this blog, and I quickly realised that an easy way to get out of writing a proper first post is to list them in full:


1. The pun in the title was too good to pass up.

2. I like talking too much.

3. I may have recently developed some kind of horrible blogging addiction.*

4. People often want to ask me questions about how I'm doing/what actually is wrong with me and I tend to confuse them with the answers.

5. To be a vaguely useful repository of information about pituitary adenomas.


So there you have it. I guess the best thing to do would be to give a chronological account of the various things that have happened; diagnosis, initial treatment, surgery etc. etc. But I seriously doubt I have the attention span for it. I shall strain every sinew to give a fairly detailed account of my experience of surgery (well, not the actual gross pass-me-the-chainsaw-nurse part, but certainly the bits I was awake for) because before I had my surgery I wanted to know what to expect, and wished that other bloggers with pituitary adenomas had gone into more detail about it. But other than that, who knows? If you have any questions, feel free to ask.


* I also have a blog dedicated largely to nice photographs which I've taken and a blog of vaguely amusing cupcake pictures I've drawn. Oh, and in my capacity as volunteer marketing lady I am developing a secret blog in secret, like some kind of sinister top-grade weapons manufacturer. Possibly at some point I may need to stop in order to sleep.