Thanks to Trystan

So i have read blogs but really havent ever thought of writing one myself. Well that is until i was diagnosed with Pituitary Gland Macroadenoma and came across a cracking on-line diary written by Trystan. Please do take a look at his diary and give him the credit for getting me going :)

THANKS TRYSTAN! In the first 24 hours of being diagnosed with the tumour and symptoms of Acromegaly (yes there i said it yes i have those symptoms too) it proved a massive help and cheered me up!

12 Comments

  1. Hey Richard,
    Thanks for the thanks! Your blog looks great by the way – and I’m looking forward to reading your postings too. I’m delighted that you’ve now met the man with the red socks (Prof T) – you’ll be in excellent hands. You know that already though, and I’m sure you felt that as soon as you were there.

    Good man Richard!
    Trystan

    • Yes you are so right!

      Just a few mins with Prof and Nurse M made me feel a whole lot better.

      By the way my igf1 was 151 and apparently should be 40. I can’t see any ranges where 40 is normal for me 35 yrs old. Any ideas?

      • It looks like the units of your IGF-1 are in nmol/L (“nano mole per litre”). In my book, for somebody male between 25-39 years the range is 14.8 to 64 nmol/L. It’s a bit academic though as the range is dependent on the assay (test) that they do which varies from centre to centre.

        So as far as that it should be 40. This is what I reckon -it’s the mod point of the range. If you subtract 14.8 from 64 you get 49.2. So 49.2 is the range from the two extremes. Halve that, you get 24.6. That’s half the range. Add that to the bottom of the range to bump it up to average and it’s 39 (but let’s call it 40!).

        My IGF-1 was some four times more than what it should have been, but yous is a fair bit less that that.

        A positive way of looking at it is that if the adenoma is having a jolly good time at pumping out stuff, then surgery is going to have one heck of a big impact on lowering that stuff.

        • Thanks for that. Yes I didn’t quite get it. Prof said that my igf 1 was five times where it should have been but the numbers just don’t make sense. I’m going in to see my Endocrinologist at The Royal Albert Edward tomorrow for a catch up and am going to use that as an opportunity to get a better understanding of the blood tests. Will also get the blood stress test results too. Will take a note book too

          • Yep thought that. For my next appointment with Prof I’m going to rock up I’m bright pink socks with a copy of my new book under my arm

  2. I meant “mid point” not “mod point” by the way! My book is Greenspan’s Basic & Clinincal Endocrinology, 8th Edition. It’s bright orange, and it’s brill.
    Trys

    • Cool will look for that. How do you go with joint pain. My left knee has been giving me serious pain for the last 3 months and I’ve stopped running. Is it better to wait until after the op to see my gp ? Bet it’s linked.

      • My left hip give be jip now and again. It’s almost non-existent since my pituitary op though.

        You’re right I reckon. Your knee problem is probably linked – it could just be excess fluid (which will go down really quick after your op). You may as well see your GP, there’s no harm in it, and it gives him another opportunity to learn about the symptoms of acromegaly. You’re a scarce type of patient – the stuff your GP learns will mean he’s more likely to spot others.

        Try and get your GP’s email address and send him updates.