New endocrinologist ?????

[saints]

Hi everyone, Just wondering if anyone has the same problem as me, my pituitary gland doesnt work at all, due to an accident when i was younger. At the moment i go to the royal hospital liverpool but am looking to change , dont know where to though, just not very happy where i am June x

[Clutter]

Saints,

email [e-mail] for a list of member recommended endos.  Bear in mind they will have been recommended for thyroid &/or adrenal expertise and may not be pituitary specialists.

[helvella Administrator]

You might find the website of headinjuryhypo of considerable interest.

headinjuryhypo.org.uk/

I have no information about where you could go. I guess you want it to be not too, too far away.

[saints in reply to helvella]

Thanks you, I will have a look at the website xx

[BadHare]

Hi June,

I found the Royal to be useless with regard to the symptoms from a pituitary adenoma.

I swapped to Aintree, where the staff are nicer & they've not lost my notes or kept me waiting for several hours because they've screwed up, but they weren't much more use with regard to my secondary hypo symptoms.

Your condition is probably a lot more serious than mine, so perhaps some advice from The Pituitary Foundation could be of help. It's their website & information in the quarterly magazine that made me realise I'd had hypothyroid symptoms since my teens.

You can go to their website for more information. Or, if you're local to Liverpool, you could attend one of the monthly meetings that are the last Saturday every month in the drill hall opposite Aintree hospital. The details are on the PF website under local groups. The meetings I've attended were a little formal, but the people are lovely & very helpful, & there's a buffet afterwards. You'll be able to have a chat & hopefully get the advice you need.

M*

[saints in reply to BadHare]

Thank you, I did once get transferred to my local hosp but they weren't used to dealing with my problem, it was like the blind leading the blind.I'll have a look on their website though.Its hard to see the consultant when my apt keeps getting cancelled, They say its due to being a consultant short and no money to employ another so doesnt look like its going to get any better. Now i have to wait til august and thats if it doesnt get cancelled again.One year it got changed that many times it was almost 2 years when i saw the endo Thanks again

[BadHare in reply to saints]

With that debacle, surely they should send you somewhere private!

The blind leading the blinded to TSH testing seems the norm, but you need to see someone soon.

Have you contacted PALS? They seem a bit more adept at sorting issues with appointments than going direct. I'm sure the Pituitary Foundation may be of help, too.

M&

[saints in reply to BadHare]

I have just emailed them so fingers crossed, Thanks again xxxx

[ladystrange13]

Professor bowen Jones who is based at arrowe Park hospital is amazing, I see him at clattetbridge  

[BadHare in reply to ladystrange13]

My friend saw a Jones at AP, who insisted RAI was safe, & the best treatment for Graves. She is now very ill with a completely dead thyroid, constant pain, & stomach damage as the radiation dose was so high. The hospital has finished wrecking her body, & she's now dealing with inadequate medication, the wrong medication & a clueless GP.

[saints in reply to BadHare]

hi, just to let you know i have got an email back from the pituitary foundation, they have sent me a list of 3 which are all centres of excelence, i now have some information when i go to my gp, thanks again xxx

[heathermr]

Saints,

I also have a faulty pituitary as the result of a head injury some 25 years ago.  I was slightly hypo before the accident - I blacked out as chicken pox took hold and split the back of my head open on a metal edge across a door way.  I now know that I had a basal skull fracture which has clearly damaged the pituitary which is bad enough but the treatment for the resulting severe hypo nearly killed me!  My TSH has dwindled to nothing and I also suspect  most of the other hormones are also giving up the ghost as I became very ill.  The Endos I saw were all totally useless insisting on giving me T4 which has just made me even more ill and I became very close to loosing my life.

Finally I came across Paul Robinson who explained to me that the TSH levels control the conversion of T4 to T3 and so it was clear that I had to change to T3 only medication. The hardest part was persuading the Endo to give me T3 but I now self medicate as he admitted he did not know anything about T3.  Its completely changed my life and I am up and about playing tennis, walking and living life as well as possible.  Sadly the lack of correct treatment has left its mark as I now have hypothyroidal dementia but its been 11 years since my diagnosis and I am still here! 

Good luck in finding the correct treatment for you.

Heather

[saints in reply to heathermr]

Thanks Heather, I was diagnosed about 30 years ago, since then my medication hasnt changed except im now on growth hormone, I am fed up of feeling so under the weather. What i would give to just feel awake and alive !!!!.Maybe i need to see about being prescribed T3. Thats quite hard when my hospital appointment with the endo keeps getting cancelled, Thats the 3rd time, should be going on tue, got sorted in my head what to say and its been cancelled last minute, Now its in august. June x