Personal Blogs

Hello!  No, there's been nothing interesting to say in the last year.  But now there is!

Irradiating the brain doesn’t come risk-free, you know.  One of the half-expected things was an element of pituitary failure.  The pituitary gland is a little thing at the base of your brain, which produces eight different hormones.  The odds of one of the eight failing is 60-70% after general brain radiotherapy. So you know something is likely to happen, the mystery is which one of the eight it’s going to be (depending on which one, it can be inconsequential or it can be life-threatening).

The research study I signed up for is all about this sort of collateral damage.  Because the radiotherapy was image-guided and intensity-modulated, the super-snazzy computer will know exactly how much radiation landed in which parts of my pituitary – combine that in with data from a load of other people, and you find out what the risks are, and whether it’s possible to design the radiation dosing better.

So what’s happened?  Well, I’m not making any growth hormone (GH).  “But you’re already grown up!” I hear you say.  I’m kind of ready for the fact I’ll be explaining this for the rest of my life…but growth hormone isn’t just for growing.  Adults need it too – a lot less then children need it, but still very necessary.  It takes care of lots of physical and psychological things.  The last study visit I had, various tests showed the physical effects, and the questionnaires I filled in showed the psychological ones.

 Here’s a formal list of what GH deficiency does to an adult:

• increase in adipose (fatty) tissue (especially around the waist)
• decrease in lean body mass (muscle)
• decrease in strength and stamina, reduction in exercise capacity
• decrease in bone density, increase in rate of fracture in middle age and beyond
• changes in blood cholesterol concentrations (increase in LDL and decrease in HDL)
• excessive tiredness
• anxiety and depression
• feelings of social isolation
• reduction in 'quality of life'
• increased sensitivity to cold or heat

In more day-to-day terms: I can sleep at an Olympic level.  I can’t be bothered with an awful lot else.  I know a walk out in the sunshine will cheer me up and make me feel like I’ve achieved something, but I’ll just nap instead.  Actually, the one thing I do seem to be able to motivate myself to do is walk – only so long as it’s via somewhere that’ll sell me a larger-than-individual portion of chocolate

I’ve bailed out on the current OU module – just couldn’t keep anything in my head.  I’m reading a bit less than usual, and almost exclusively lightweight fiction (normally it’s 20-25% fiction).  And I’m only reading one book at a time (usually I have 3-5 books on the go at once; though only one will be fiction).

Nothing life threatening, but definitely far from life enhancing.

So what can be done about it?  Well, fortunately something can be done about it – it’s only relatively recently that growth hormone has been given to deficient adults.  I think the reason it used to be reserved only for children was that it used to have to be harvested from the pituitaries of dead humans or dead cows; there was therefore a limit to supply.  Nowadays, it’s produced by some lovely little genetically engineered bacteria, which make perfect human growth hormone.  No ick factor, no mad cow risk.

It doesn’t work from everybody, so the first thing they do is a 9-month trial of it.  The pharma companies who make GH fall over one another to pay for your 9 month trial – because if it does work, they’ve got your custom for the rest of your life.  But, they’ll only fund this if you’ve got someone already guaranteeing to pay the £3-4000 per year that it’ll cost after the 9-month trial (assuming it works).  The hospital have filled in all the forms to ask my GP to pay for it; my GP may say no, but the nurse has assured me that if they do say no, the money can be found elsewhere.  It’d be coming from the same pot of NHS money, just via a different route…

It can take 3-6 months to see an improvement; I get a bunch of baseline measures, and then the same done again at 1 month (to see if dose needs changing), 3 months, 6 months and 9 months.  I have to show a certain improvement in the questionnaire scores to be allowed to keep taking it.

So I’m waiting for the funding decision, and then we can make a start.  It’s a nightly injection, with an auto-injector pen (like insulin or an epi-pen), which I’m not in the slightest bit bothered about.  I’m sure I’ll let you all know when I get started, and then again if it makes me start feeling human again