Can anyone help ?

My daughter is now one year on from having a pituitary tumour removed.

The problem is she has been left high and dry in the endocrine aftercare department. Her thyroid isn't functioning properly and after six months of insisting we get T3 T4 checked, they found that the surgery had affected her thyrotrophin production. She was grudgingly put on Levo by her endo in South West Wales in June, but she has conversion issues so consequently her T3 is very low. Is there any doctor who will prescribe Armour, as she doesn't tolerate T4 well.

She has been on Hydrocortisone 3 x daily since the surgery and is really struggling with tiredness, apathy and depression. Last December we nearly lost her. Her surgeon at the QE in Birmingham now acknowledges that some damage had occurred to part of the pituitary gland, (either through the growth of the tumour, or the surgery itself), but the other crucial areas of the pituitary gland have never even been tested for function. She is suffering with terrible hormonal issues and her monthly cycle is non existent and her overall recovery just isn't happening.

Does anyone know of a good endo within a hundred miles or so of Pembrokeshire. Either NHS or private. Nothing could have prepared us for this. She has tried everything possible herself with diet and supplements but we really need someone who knows what they're doing to help us now. Thanks for any advice you can give.

4 Replies

oldestnewest
  • I've sent you a PM

  • Hi, I also live in Wales. Originally from South West Wales but now live in Mid Wales, and there aren't any Endo's in Wales who specialise in thyroid, I have looked. I have an Endo (NHS) but have asked my gp practice to refer me to one in England who's also NHS. Gp is making the referral and has said they need to justify why it is out of area and also, could take around 6 months. For me, its worth the wait, if Endo turns out to be really good

  • Good luck with that then. We came to south Wales from the West Midlands to help Claire (in theory) to recover from major surgery. We didn't realize at the time that the docs down here are very stuck in the old ways, (regarding T3 etc). The docs in the Midlands weren't much better tho. It just seems to be luck more than judgement if you get a good doctor wherever you live.

  • Concernedwales, email louise.warvill@thyroiduk.org.uk for a list of recommended endos. When you get the list you could contact those within travelling distance to see whether any are pituitary specialists which is what I think you probably need.

You may also like...