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Hi, my energy is particularly low at the moment but once I start going into things I usually can't stop, so I'm going to deliberately keep this short and sweet.
I have researched thoroughly and believe the reason I have felt so much more ill since taking levothyroxine is because I also have secondary/tertiary AI and even the warnings in the patient leaflets for levothyroxine say that adrenal issues may need to be addressed before starting on thyroxine.
I have been fighting to try and get the NHS to listen to me for 2 years, it's been a complete nightmare and i am just about at the stage of giving up altogether and going for self treatment.
I have no quality of life, in bed most of the time and cannot do anything any more.
My ACTH and cortisol levels have been low and getting lower since I first saw the first endo, in February last year.
I had an insulin tolerance test that showed an 8 am starting cortisol level of 43nmol (1.56 ug/dl), and did not increase at all in response to induced hypoglycaemia; in fact in went down to 26 nmol (0.94 ug/dl), hopefully that will mean something to someone. From my research and with my other blood results through the year it supports secondary/tertiary AI.
I was in hospital for a week and a cortisol\ACTH test taken at midnight, that was supposed to have been done at 8am (it's been a hell of a struggle to get the results and as yet I still only have a few) showed the highest cortisol/ACTH I have ever had at 453nmol (16.42ug/dl), which is a perfectly healthy result for an 8 am reading, but quite alarming for a midnight reading. In my report this was listed as an 8am reading, which I obviously found highly unlikely as I felt no different to 3 days before, when my morning reading was 63nmol (2.28 ug/dl) and my ACTH was undetectable at <5. When I found out it had been taken at midnight, they had to wake me up to take it, I realised I had to look into it.
I have found absolutely nothing in all the medical sites I have searched that references low cortisol in am rising throughout the day. When I look back on my results, all my highest cortisol levels, although still way under the reference range have been later on in the morning or around midday.
I'm desperately trying to find a reason for this so I can bring it up with my last chance endocrinologist.
That's my version of short and sweet, my apologies. I would be so grateful if anyone can point me in the right direction or has any knowledge of these strange results. Thank you in advance.
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