Borderline cortisol results with growth hormone deficiency - what to do next? UK-based
I've just had results from a glucagon stimulation test which showed a peak of 1.13 for growth hormone and 458 for cortisol and have lots of questions about what to do next.
The private endo I saw said he will refer me back into the NHS endocrinology as he said he has a very long waiting list for his treatment clinic and the growth hormone meds are prohibitively expensive at £300 per month.
However the waiting list for NHS first endo appointment is currently 20 weeks! I'm worried about getting worse in this time - is hypopituitarism degenerative?
I'm also worried because even though the private endo threshold for cortisol deficiency was 460, the NHS threshold is 430 - meaning they may not believe I'm deficient. My baseline 9am cortisol before the test was 132 which is below the NICE guideline for likely deficiency - so I'm not sure what these results mean?
I'm aware you can have a tumour - my symptoms have been stable for a few months but does the tumour usually grow? I don't know whether to wait for the NHS to do a scan in 5 months time or get one privately to speed up the process if its an urgent problem ?
What Else could I do in the meantime - I've already lost my job and making an appeal to get it back with reduced hours but I don't know if its a bad idea to keep trying to work with this condition not being treated... the job is quite physical as its care in the community. I've been thinking I would try and become a driving instructor as its a sitting down job and I could choose my hours, but feel like its giving up my career I've built on in social care.
I'm so bored too, I've been off work since April and have very little physical energy so I can't do much except sit around at home and I've been very down. I've got a therapist which will help but time just goes so slowly waiting for the next medical appointment. What did everyone else do while being off sick?