Can anyone offer some advice about Cortisol levels as I am fed up with living a quarter of a life. I had a head injury 30 years ago, and lost my TSH well over 10 years ago. After a long and hard fight I am taking T3 only as its the only thing that seems to work for me. Currently I am down to struggling with dreadful fatigue, nausea 24 hours a day, dizziness, confusion, really bad cramps and my asthma has become chronic. I am wheezing and rattling like an old steam train. I have had cortisol blood tests done over the years and always been told that they are fine, but recently I started asking for the figures and was amazed to find the levels rather low. I was referred to an Endo who ran a SST which he says is fine at 235 initially rising to 437. As this was done at 9am my research tells me that these figures should be nearer 400 plus initially but the Endo refused to even discuss the figures. Since then I have slid down the slope and become really unwell and I am on the verge of having to visit A&E as the breathing is so bad. My latest cortisol test taken at 10 am some 5 months after the last one shows a drop down to 170. This is at the bottom of the range, but apparently still regarded as "normal". How can it be normal as I feel like I'm only living a shell of life? Why is the bottom of the range Ok?
Heather
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heathermr
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Okay many Endo's don't have experience of pituitary/adrenal issues so it's important to go to a centre of excellence. Your levels are low & even your SST did not reach the recommended level of 450nmol/Ls. Your symptoms all point to low cortisol which can be dangerous for you. Cortisol varies throughout the day being at it's highest first thing in the morning when it should be between 45-550nmol/Ls, Anything under 450nmol/Ls should be investigated further. Often with the SST the doctors don't do an ACTH blood test (it should go on ice) this will show if it is a pituitary issue. The fact that you have had a head injury could be the cause of your low cortisol symptoms & should have been further investigated to see if the pituitary gland was damaged. If you would like me to recommend a Centre of Excellence then let me know which area you live in as I can point you in the right direction.
I live in Derby and I think pituitary experts are very thin on the ground here. I have just been referred back to the Endos here for a second opinion having argued extensively with the first one. So I would be very interested in your advice. Thanks,
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