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Re: Panhypopituitarism - Do we need GH????

PostPosted: Sat Feb 13, 2021 10:51 am
by Pat
Our GH Fact sheet is here to download free, and has Quality of Life questionnaire towards end https://www.pituitary.org.uk/media/603673/GHfact-sheet-2018_HI-RES.pdf

Pat

Re: Panhypopituitarism - Do we need GH????

PostPosted: Tue Feb 16, 2021 3:47 pm
by Carl
Thanks ever so much for this Pat! I've missed this leaflet completely and I will definitely be taking this forward with my Endo, although perhaps not for a while until the NHS calms down a little. The more I think about it, the more I feel I need to investigate the GH issue. I reckon I'm around 12 to 14 score on that questionnaire, I'll see what score my wife gives me :-)

Re: Panhypopituitarism - Do we need GH????

PostPosted: Tue Feb 16, 2021 3:50 pm
by MikeDCross
My consultant is clear, there is no blood test results which will get her to recommend GH. It costs £6000-7000 / year and she is clear, she will not fund.

Sorry, to say, that treatment is based on cost not need.

Re: Panhypopituitarism - Do we need GH????

PostPosted: Thu Feb 18, 2021 11:53 am
by Carl
Hi Mike, I tend to agree. My Endo has never even mentioned GH, although he does test my IGF-1 regularly which he says is "in range" and that is that. So although I will progress the issue in due course, I am prepared for a battle. I've seen it suggested that the IGF-1 isn't actually a definitive measure of whether you need GH, it is the questionnaire and then the Insulin Tolerance Test that define it. I didn't realise that it only came onto the NICE schedule as recently as 2003.

Re: Panhypopituitarism - Do we need GH????

PostPosted: Thu Feb 25, 2021 2:52 pm
by MikeDCross
The gold standard for testing GH varies between countries

Most of Europe seem to treat IGF-1 tests as good enough; the UK seems to like Insulin Tolerance Test.

Within the UK, it seems to depend on where you are, and the views of your PCT.

The UK seems to like the Insulin Tolerance Test, because they can point out the dangers of taking the test, to convince people that they do not really want to risk the test... last time it was mentioned, they listed, coma, death, long term health changes as consequences.. pretty clear they did not want to run the test.

I think one of the problems is the lack of standard process for dealing with patients, I keep hearing that they are working on standards of care and processes, but they have been saying that for the last 4 years; one day, they will have common practices for every UK hospital.

In the meantime, I think it comes down to what you can convince your consultant to do.

M