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Autoimmune disease
Low cortisol
RedPanda25 · 01/08/2017 09:46
Hi all. Just wanted to ask if anyone knew much about low cortisol? I'm due to see the endocrinologist at the hospital for my hypothyroidism and he asked for some tests to be done before I went in. One was for cortisol and it's come back as low, 169 nmol at 9am in the morning. Because of that they now want me to have a short synacthen test to check for addisons but I'm on a waiting list for that now. In the meantime I've been feeling worse day by day, fatigue, weakness, dizziness, abdominal pain and weight loss. I wondered if my level is particularly low or just borederline as the GP didn't really tell me much about it. I guess I just want to know what's wrong with me now as I'm sick of feeling poorly. Sorry for the moan! Any experiences or advice would really be appreciated.
woosey35 · 03/08/2017 00:29
Hi. My daughter has low cortisol. It was diagnosed when she was 2. She's 8 now. The first level she had was 16 when it came back. It should be around 600-700 first thing in the morning. But I think 200 or thereabouts is acceptable but needs monitoring.
My daughters level is now undetectable. She was born with hypothyroidism but that corrected at 13 weeks. Despite this, they are putting the low cortisol (secondary addisons) down to steroid use for asthma!
She takes hydrocortisone 4 x daily plus carries an emergency injection with her in case of crisis
Feel free to contact me to ask anything. I think with your symptoms you need to go back to your GP soon. The symptoms you describe are that of low cortisol which can be dangerous if not acted upon.
I hope you get answers soon. Take care.
RedPanda25 · 03/08/2017 09:05
Thank you so much for replying to me @woosey35 I'm on the waiting list to see the consultant but I think it's a long wait so have enquired about going private so I can get myself sorted. Hope your daughter is doing well xx
woosey35 · 03/08/2017 09:19
If you're showing those symptoms it's deffo worth a trip to GP and pushing. Adrenal crisis isn't nice at all. Take extra care of yourself between now and seeing consultant. Let me know how it goes. Good luck x
RedPanda25 · 03/08/2017 11:29
Thank you so much for your kind words. I've now found out that there is a waiting list for the private consultant too. I'll make a GP appointment I think and push them to see if there is anything they can do. Thank you, I'll keep you posted!
Surfingwhippet · 05/08/2017 22:45
Do you crave salt or salty foods? If you don't it may be secondary adrenal failure and the short synacthen test may come back normal if there's something wrong with your pituitary gland and not your adrenals
For what it's worth i have primary Addison's and they did the long synacthen test although gave up after 2 hours as my levels were 0 before the injection, 0 at 30 minutes and 0 at 90 minutes
WLAH · 03/12/2017 22:05
Redpanda...any update? New to this. I had the synathen test and told my cortisol levels are borderline. Waiting apt see endocrinologist
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