@johann77 My growth hormone(STH) was now 0.43 ng/ml where the range is 0.03-2.47 which also doesnt seem very good.
I agree that not only testosterone I will need, but maybe thyroid and Im not sure about the adrenals as well. Hope to be able to cope well with HCG as well.
Appears as if basal GH and ACTH are not sensitive enough to diagnose GH and ACTH deficiency in hypopituitarism.
Do you have a basal cortisol number?
These are two freely accessible review articles about hypopituitarism, maybe they are helpful
Maybe you can get hold of a low dose ACTH stimulation test to test for adrenal insufficiency.
Besides T substitution, cortisol substitution if needed seems the most important factor in the treatment of hypopituitarism.
And yes, potentially also T4/T3.
I guess you will need a really good endocrinologist to get a proper diagnosis and treatment.
Do you have any possibility to get referred to a good clinic (university hospital)?
@johann77 unfortunately I dont have access to a good doctor except remotely. Here in my country there are no doctors that can design such kind of treatment, all of them are in the stone age. The best available resource is online consultation with clinics like Defy.
ACTH stimulation test is also not available in my country. And to be honest I dont think cortisol is low. Some say the serum cortisol is high in relation to the testosterone levels:
466nmol/l (133-530)
The lowest I’ve tested it was 360
But saliva cortisol doesnt seem that high:
| Cortisol, morning 08:00 | sal | 13.13 | nmol/l | 0 - 24,10 | |
|---|---|---|---|---|---|
| Cortisol, noon 11:45 | sal | 9.42 | nmol/l | 0 - 9,65 | |
| Cortisol, afternoon 16:45 | sal | 2.73 | nmol/l | 0 - 9,65 | |
| Cortisol, night 23:45 | sal | 2.98 | nmol/l | 0 - 11,30 |
Im confused with the cortisol results to be honest and how can cortisol be high and ACTH low? Maybe ACTH is low due to a negative feedback loop?
Concern with hypopituitarism is ACTH deficiency leading to dangerously low cortisol levels. But your basal cortisol levels and the saliva levels seem to be fine.
The problem with ACTH and cortisol is, that basal levels don’t seem to be sensitive enough to exclude cortisol deficiency in the setting of hypopituitarism. While basal cortisol is ok, the question is how well do your kidneys respond to a stress situation mimicked by the ACTH stimulation. The aim of the test is to differentiate between ACTH deficiency caused by your pituitary (pituitary failure) and a loss of cortisol release capability by your adrenals (so to say adrenal ‚fatigue‘).
Low ACTH with adequate cortisol is not something to worry about. ACTH is secreted in pulses and ACTH Levels and cortisol do not go hand in hand typically.
I think it will be really difficult to manage this on your own. But the guidelines below gives a very good and comprehensive overview of how to diagnose and treat hypopituitarism. I highly recommend to study this in detail.
