10 Medical New Year's Resolutions

2011 has been an exceedingly medical year for me. I had brain surgery, you know. So I have decided to make a list of my New Year's Resolutions for 2012, focusing not on the traditional "follow a diet quit smoking stop chewing your toenails" nonsense that is the bread and meat of new year's resolutions in general, but on solid and occasionally revolting medical matters of note.

And so. In the year 2012, I resolve:

1. Not to be in need of brain surgery or radiotherapy

2. To aim for a minimum of a 50% reduction in the amount of blood tests I have compared to 2011 (without a corresponding 50% increase in blood volume... that would be gross)

3. Not to get schistosomiasis

4. To learn how to pronounce schistosomiasis

5. To laugh at a homeopath (I am homeophobic)

6. To maintain an entirely appropriate heartrate at all times

7. To visit the Hunterian Museum and be suitably traumatised - and specifically, to see the skeleton of Charles Byrne, the "Irish Giant", a 7 1/2 foot tall man who suffered from acromegaly.

8. To disconcert my endocrinologist at least once by asking a lengthy and pointlessly technical question and then pretending to understand the answer.

9. To persuade my friend, a medical student who runs a Dermatology Society, that she should hold a dermatology quiz and pizza night, in which prospective dermatologists must diagnose which skin condition is represented in each pizza's toppings (eg. a pizza with olives hidden under the cheese could represent buboes. Yum.)*

10. To win the lottery (not technically a medical resolution, but that's no reason not to try)


Here's hoping 2012 will be an excellent year of few medical problems and many revolting pizzas. Happy new year!

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* Seriously, this is an awesome idea. You should do it.

IMFW: Beware Boxing Day

It's Boxing Day and all, so I'm keeping today's Interesting Medical Fact of the Week short, snappy, and slightly concerning; science informs us that you're more likely to have a heart attack on a Monday. Apparently, this is ascribed to the twin horrors of overindulgence at the weekend and the shock of returning to work. Given today's date, hopefully you're not back at work - but the "overindulgence" issue may well apply...

IMFW: Blood, Blood, Blood; or, Don't Move to Hong Kong

Today's interesting medical fact of the week is all about blood groups! Anyone who's done GCSE biology, or has donated blood (which you should do, incidentally) is probably aware that there are two most commonly used blood group systems. You're likely to be classed as Rhesus positive or negative - i.e. you either have, or do not have, a particular antigen on the surface of your blood cells - and then into one of the groups A, B, AB and O. People of blood type A react to blood with B antigens in, people with blood type B react to A antigens, people with blood type AB react to neither, and people with blood type O react all over the place, the whiners. Here is a handy chart from Wikipedia which explains it all clearly.

Apparently Back In The Day, kids used to routinely test their own blood group in school, thus gaining useful scientific understanding and practical skills. Unfortunately this practice was stopped, probably due to the dreaded Health and Safety, but (according to urban legend) also due to the fact that childrens' paternity kept being called into question by it.

Having given blood myself (after which I had a Funny Turn and was tragically forced to lie down eating biscuits for half an hour), I happen to know that my own blood type is A negative, which means that, were I to suffer significant blood loss, I could have a blood transfusion of either A negative or O negative blood. About 7% of the UK population is A negative- and about the same number have O- blood, so there's maybe 14% of blood stocks which would be available to me - probably a little less, because O- blood can be used for all blood types so it's used in emergencies where the recipient needs blood urgently and their blood group is unknown. So that's fine.

My parents admitted to me several years ago that there was a possibility we as a family could have moved to Hong Kong at one point in my childhood, which they mysteriously neglected to mention AT ALL at the time. Had we ended up moving to Hong Kong, our family's main concerns at the time would have been leaving behind all our family and friends, and not speaking the language. I doubt it would have occurred to anyone to even vaguely consider the fact that two of our family members have Rh negative blood. And in Hong Kong, and elsewhere in Asia, that is very, very rare. Only 0.69% of the population of Hong Kong are Rh negative. When your transfusion opportunities are restricted to A- and O-, only 0.5% of the population of possible blood donors are compatible.

I had no idea that this is actually a very real problem in Asia. There are numerous cases of people being unable to have treatment until donors of the right type are found, and if you suddenly lose blood in an emergency situation, things really don't look good. Because Caucasians have a much higher proportion of Rh negative people, foreigners often need to be targeted in blood drives.

It's also not something that I ever remember being informed about by anyone before travelling. The risk of needing a blood transfusion in other countries, if it's ever been mentioned to me, was framed as a risk of dirty or infected needles. One of the articles linked above, from a website for expats in Bali, notes that it's irresponsible for people to not know their blood type, and that all Rh negative expats should register to be put on a list of potential blood donors for emergency situations. It doesn't surprise me that people who travel out there aren't aware of this issue though, because I had never heard of it! And the problem is made worse by the fact that, due to vCJD ("mad cow disease") fears, many countries do not allow anyone who has lived in the UK or elsewhere in Europe to donate blood, further depleting the pool of possible donors.

So: be aware. And if you live in, or travel to Asia for an extended period of time, check out your blood type.

On a more lighthearted note: my favourite article from researching this post was a suggestion that people with RH negative blood are descended from aliens. Oh, and in Japan, blood types are used as we use star signs in the West, to categorise personality types.

My MRI Experience: Stuck In A Moment. And Also A Tube.

Today I thought I'd continue my story of diagnosis and treatment, admittedly with a slight gap in continuity from my last post, by talking about the first MRI (Magnetic Resonance Imaging) scan I had. Brain MRI scans are pretty cool; it seems very weird to be able to look at a picture of the internal apparatus with which you are looking at the picture of the internal apparatus that you're using to - well, you know what I mean. Brain MRIs get recursive fast!

Around this time last year, having had my introduction to my local endocrinology department, blood tests had decreed that I did not suffer from Resistance to Thyroid Hormone and therefore the doctors knew that I almost certainly had a pituitary adenoma producing Thyroid Stimulating Hormone (TSH-oma).

Endocrinologists tend to leave off MRI scanning of the pituitary gland when diagnosing these conditions until they've ruled out all other options. This isn't a Daily Mail-worthy example of NHS cutbacks; it's because small, harmless pituitary tumours are quite common. Finding one on an MRI scan might lead doctors to wrongly diagnose a pituitary condition like TSH-oma or Cushing's disease, when in fact the tumor is not what's causing the problem.*

I knew that things must be reasonably serious when my endocrinologists allowed me to jump the queue for MRIs at the hospital. In fact, I jumped it so completely that the NHS paid for me to have my MRI done immediately at a nearby private hospital, because there were no scanners available at the NHS hospital for a few weeks. It was slightly disconcerting, not just for the speed at which it all happened, but also because I had to travel to the mystery hospital on my own, by bus, to the middle of the countryside. The bus driver dropped me off with another girl who was fortunately also headed for the private hospital, and we were left in a random village with no signposts or map. Eventually we got there, and I heartily thanked the paranoia which had led me to leave home an hour earlier than I needed to.

Before my MRI, I didn't know much about them, apart from the fact that, as the scans work through big old magnets - hence "magnetic resonance imaging" - you have to remove all metal from your body or risk it moving around in the magnetic field; consequently, no pacemakers allowed. I wanted to know what to expect, so I scoured the NHS website and interrogated family members who had already had one. They said: you take off your watch, you lie in a tube, it's loud, you have to stay still, the technician shouts "stay still, damn you!", you leave.

NOW JUST HOLD YOUR HORSES.

An account such as the one above leaves out some crucial information for folk like me. For one thing, I didn't realise that, as it was my general cranial area being scanned, they would trap my head in a box stuffed with cushions to prevent it from wiggling. Then, head duly caged, you slowly roll backwards into the MRI scanner. Anyone who is claustrophobic would not be a fan, although they gave me a panic button which I could beep if I needed rescuing.

In fairness, the staff know that this is a freaky experience and repeatedly asked "Are you ok?". Towards the end of the scan, I also realised that the machine had a reassuring mirror placed just above my eyes, which means that patients can see the MRI technicians at work through a window at the back of the room. Or at least, patients who aren't stupidly and entirely blind without their glasses, like me. I am wildly shortsighted and consequently, even once I had realised that it was a mirror, and even though it was really pretty close to my face, all I could see was pinkish blurs.

The radiography folk gave me some sexy earplugs to wear, to block out the noise of the MRI scanner going mental with magnets. Unfortunately, these kept falling out and, because my head was wedged in with cushions, there was no way of putting them back in. MRI scanners really are incredibly loud, and it's not just the loudness that's the issue - the noises they make are weird and erratic, much like a young Kate Bush. When it all goes quiet, you find yourself tensing in anticipation of the next staccato burst of noise, and when it suddenly starts shrieking in your ears it's pretty tricky not to jump out of your skin, especially if you're pumped up with thyroid hormone and thus pretty jumpy anyway.

The technicians do not like this.

Partway through (the MRI took about 40 minutes, I think) I was pulled out of the machine. My heart leapt - time goes a bit screwy when you're in a weird screaming machine - perhaps it was finished? But no, they just wanted to inject contrast dye into my arm and bung me back in.

I whiled away the time by trying to remember and recite poems in my head. I did "The Jabberwocky" a couple of times, the prologue to Romeo and Juliet, my favourite speech from Macbeth, a couple of poems and odd verses from Siegfried Sassoon, and pretty much anything else I could remember. I was very bored. Pro-tip: learn some new poetry before having an MRI and then take advantage of the time to test your memory.

Anyhow, I realise I may have made my MRI scan sound like a horrific experience** but actually it was totally fine, and I much preferred it to having endless blood tests at the hospital. I admit I was irrationally afraid that there would be a previously unknown bit of metal embedded somewhere in my body that would rip out in a bloody mess.

Fortunately, this did not occur.

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*Such tumours are known as "incidentalomas".

**Or I may have just made myself sound like a massive whinger...

Addisonian Crisis... or stressful football match?

I found an article on BBC News about how a woman was recently diagnosed with Addison's Disease, and one of the key clues to her underlying condition was her extreme response to the stress of watching particularly close and high profile football matches. They think that treatment for her condition may have cured her extreme reaction to tense games of football... but they can't be sure because her treatment and diagnosis has happened at the same time as a run of easy matches for her favourite team!

Addison's Disease is a medical condition which occurs when the body does not produce enough cortisol, a steroid hormone - basically it's the opposite of Cushing's Disease. Some people who suffer from pituitary problems due to a pituitary tumour, or after surgical removal of a tumour, are unable to produce ACTH, the pituitary hormone which stimulates the body's production of cortisol, and consequently they need to take steroids to make up for the lack of cortisol. The tricky part is that the body needs more steroid hormone when it's under stress, so when people who take steroids are sick or injured, they need to double their dosage.

After pituitary surgery, most people including me, go onto steroid replacement pills just in case there's been any damage to the part of the pituitary that produces ACTH, and take them until doctors are sure that the body is producing steroids naturally.

The aim of this is to make sure they don't suffer an Addisonian crisis, which is an acute medical emergency where there is a severe shortage of cortisol, usually in a high-stress situation. If untreated it can lead to death or coma, so people whose bodies don't produce cortisol on their own usually have some form of medical ID in case they're in an accident, to inform paramedics that they will need steroids immediately.

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.

Let's Get Technical, Baby

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

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

Don't cry.

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

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

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

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

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

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

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

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

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

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

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

****Somatostatin.Lol.

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.

IMFW: Arms for A Leper?

Leprosy. As no doubt you already know, it's primarily a granulomatous disease of the peripheral nerves and mucosa of the upper respiratory tract...

Ok, no. There are two things everyone knows about leprosy:

1. It's highly contagious.

2. Your bits fall off.

Interestingly, as it turns out, neither of these facts are actually true. Whilst it used to be thought that it was highly contagious, and sufferers were banished to live out the rest of their days in leper colonies, around 95% of people are naturally immune to the disease - it's possible that in the earlier days of medicine, it was sometimes confused with syphilis, hence the fear of infectiousness. Oddly enough, you can, however, catch it from armadillos.

Leprosy doesn't cause people to lose limbs or digits, but it does affect the nerve endings and impairs peoples' ability to feel pain. This means that people with leprosy tend to injure themselves easily, not realise, and then the wounds become infected, resulting in tissue loss. Fingers and toes can also become shortened due to loss of cartilage in joints.

To this day, despite high natural immunity and the availability of effective treatments, many sufferers around the world are forced to live in leper colonies even after they've been cured, because of the fear and misconceptions surrounding the disease.

Headache? Brain Tumour!

So I thought maybe I should write a post about the pituitary tumour headaches that I get. As I have almost certainly complained previously, for many years I never got headaches and then, gradually, I started having them more frequently. Every now and again, right after taking a couple of ibuprofen,* I would entertain the vague thought that maybe I should go to the doctor and get it checked out... and then laugh at myself for being melodramatic. Oops.

Because the thing is, they never happened that frequently. Maybe once every few weeks. I was under the vague soap opera impression that tumours in your head  gave you headaches continously, but apparently this is not necessarily the case! After my operation, I had headaches more frequently for a month or two (not particularly surprising given that surgeons had been rummaging around in there with sharpened implements), maybe a couple of times a week.**

My pituitary adenoma headaches are actually usually pretty similar. Previously, I would get pain all around the edge of my right eye socket, and right at the back of my eye - and it is somewhat disconcerting to feel where your eyeball must be - although since the surgery, it has improved (yay!) - I only really get it in the upper left-hand corner of my eye, which is where the pain used to be worst. I always feel slightly better if I massage that corner of my eyebrow; this has now turned into a habit which I catch myself doing even when my head is not hurting.

But ladies and gents of the internet - fret not if your headache sounds similar, for you probably do not have a tumour in your head (though that does not mean that your headache could not be seriously unfortunate). The Power of The Internet informs me that there are all sorts of different types of headaches even amongst pituitary tumour patients, so pfft, who knows. Just go hassle your doctor about it.

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* Paracetemol makes me cough. Apparently this is odd.

** I wasn't allowed to take ibuprofen due to being on steroids, and I wasn't supposed to cough lots, which ruled out paracetemol. This put me in something of a quandry for painkillers, but as they didn't tend to last too long I am INCREDIBLY BRAVE, I just did without.

My Heart Goes Sha La-La La-La

My rate of posting has dropped slightly recently, down from those heady days in November when I was continually finding out new facts about Russell Watson, and stalking unwitting commentators on the Guardian's website. This is not because I have lost interest in such matters - far from it - but because I'm taking exams at the moment and consequently dedicating my energy to revision and work, rather than obsessive tumourhead fact collection.

Incidentally, the most popular search term for my blog is currently "peoples big noses". Say what?

In any case, as well as spending my days drawing extensive mind maps, and making full use of my considerable collection of coloured pens,* I have discovered a new and interesting fact about my post surgery self; namely that my traditional mild pre-exam nerves (which previously I rather cherished for their ability to get me writing quickly) now serve to completely undermine my body's new-found ability to regulate its own heartbeat.  So, with a speedy speedy heart, the exam was a slightly more stressful experience than I had expected, and I will definitely be carrying beta blockers with me next time.

Ah, tachycardia.

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*Because that's what revision is about.