glucogon test

Re: glucogon test

Postby MikeDCross » Fri Feb 02, 2018 4:15 pm

My consultant called

She has reviewed my GH questionnaire, and I scored 21/25, anything over 11 is considered a problem.

The glucogon tests are in, they were just reached borderline.

But, there is always a but
- the questionnaire is deemed to be an indicator of something, not necessarily a GH issue; so she will ignore this.
- the glucogon tests are an indication of a problem, but not the gold standard test. so I have to ask why do a test which does not count? It was cheap. And again, it is an indicator, not a defining point.

So, now I have to have an Insulin Stress test, which sounds most unpleasant and means being referred to UCLH; which is a major pain to get to.

Given that the blood tests and the questionnaire indicate a problem – can we start treatment? No, it is expensive, so they will only approve it after the Insulin Stress tests

Overall, I am annoyed that she was wasted months doing tests which she ignores, and now more delays; and I really dislike cost being the deciding factor on treatment.
MikeDCross
 
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Re: glucogon test

Postby member_41389 » Fri Feb 02, 2018 9:24 pm

Hi
The Insulin Tolerance Test is not used as a first line test because it is expensive in resources and can cause significant issues; see for example pages 3 and 4 ( http://www.bartsendocrinology.co.uk/resources/PITUITARY_Barts_protocol_$5Bfinal$5D.pdf ). You have to give consent, ideally informed, for any test and I would suggest that you ask your consultant for a detailed description of the potential hazards to you, his reasons for suggesting that it might be appropriate for you to undergo it and what benefits will you gain if you do take the test.
I, happily, would be excluded on the basis of having fitted on one occasion, having heart disease, long-term hypoadrenalism and an abnormal ECG. I was particularly impressed by the first line in the procedure requiring the presence at all times of either a doctor or nurse, which is very expensive to do and in the current NHS chaos may not be possible.
Take care and stay safe
Tim
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Re: glucogon test

Postby MikeDCross » Sat Feb 03, 2018 3:15 pm

Tim,

The more I think about it the less appealing the whole thing is:
- Thank you for the URL, the description of the test sounds very unpleasant, and yes, very expensive.
- I am now more worried about the side effects during, immediately after and longer term - none of them sound like something I would willing volunteer for.
- Due to unrelated physical issues getting to a central London hospital will not be without considerable pain and inconvenience, and that ignores the cost

I am convinced that this has nothing to do with being a good clinician, and all about delaying or avoiding having to pay for GH treatment.

I wonder what she will do if I decline the test on the basis that the risks are to high – something to talk to the consultant I’m referred to.

Thanks
MikeDCross
 
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Re: glucogon test

Postby steve » Tue Feb 06, 2018 10:20 am

Hi again,
After I had a glucagon test my consultant also wanted a second test, but in my case it was an arginine test (Page 11 of http://www.bartsendocrinology.co.uk/res ... nal$5D.pdf ) This was a very similar experience to the glucagon test (i.e. reasonably pleasant) and as it says "CONTRAINDICATIONS None PRECAUTIONS None"
Best wishes, Steve
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Re: glucogon test

Postby MikeDCross » Thu Feb 08, 2018 5:59 am

Hi Steve,

Thanks for the info.

I've been reading, it seems that the insulin test is about 60% accurate, and people end up with other tests (all of which are less unpleasant) to check the results - this makes no sense to me, there are clearly less unpleasant test which give the same details.

I guess I have to wait for my consultant to refer me, and then the hospital to send me paperwork - this feels like a long process.

Mike
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Re: glucagon test

Postby MikeDCross » Sat Feb 10, 2018 3:09 pm

Finally a copy of the report from my test

"He has also had a glucagon which was equivocal is that is serum growth hormone level at 3 hours rose to 4.86 ug/l which is below the threshold of more than 6 ug/l"

I have no idea if that is good or bad, and the report does not explain what it is. Any ideas what these numbers are showing?

Thanks
MikeDCross
 
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Re: glucogon test

Postby steve » Mon Feb 12, 2018 10:51 am

Hi,
I believe this means that you are definitely suffering from Growth Hormone deficiency.
Regards, Steve
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Re: glucogon test

Postby MikeDCross » Thu Feb 15, 2018 11:40 am

Steve

I agree everything I read says that, so I do not understand why the consultant wants another test; other than to delay things. She seems quite intent on delaying treatment to save money.

Thanks

Mike
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Re: glucogon test

Postby member_41389 » Thu Feb 15, 2018 9:20 pm

Hi
I wondered if the extra testing was to tick a bureaucrats check list.
NICE gives some information at https://www.nice.org.uk/guidance/ta64/chapter/1-Guidance. The bit I found of note was that prescription of GH is limited initially to a trial period based on both biochemical levels (below 3 microg/L) and Quality of Life and can only be done as follows: "Initiation of GH treatment, dose titration and assessment of response during trial periods should be undertaken by a consultant endocrinologist with a special interest in the management of GH disorders."
So the comment about equivocal result is that pass mark wasn't reached but was above NICE trigger level. The additional testing may be to see if a clearer result can be found.
It's definitely complicated and the bureaucracy sounds difficult too.
Tim
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Re: glucogon test

Postby MikeDCross » Fri Feb 16, 2018 4:46 pm

Tim,

Boy do these people know how to write complex English

Recombinant human growth hormone (somatropin) treatment is recommended for the treatment of adults with growth hormone (GH) deficiency only if they fulfil all three of the following criteria.

    They have severe GH deficiency, defined as a peak GH response of less than 9 mU/litre (3 ng/ml) during an insulin tolerance test or a cross-validated GH threshold in an equivalent test.
    They have a perceived impairment of quality of life (QoL), as demonstrated by a reported score of at least 11 in the disease-specific 'Quality of life assessment of growth hormone deficiency in adults' (QoL-AGHDA) questionnaire.
    They are already receiving treatment for any other pituitary hormone deficiencies as required.

So, I passed 2+3 with ease, and I'm borderline on 1 - I guess I have to wait for the next test.
MikeDCross
 
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