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GriffyGirl70 07-13-2014 06:15 PM

Low Cortisol. Is it the Culprit?
My neck is very swollen as well as my face, I have a choking sensation and sometimes it is hard to swallow and breathe. I have 5 nodules the largest of which is 1 cm. I had my thyroid checked last year and these are my numbers. I am finding out that my PCP knows NOTHING about any of this.

2013/11/08 thyroxine, serum, total 7.7 ug/dL 4.9-11.7
2013/11/08 triiodothyronine resin uptake 23.8 % 22.0-35.0
2013/11/08 thyroid stimulating hormone, serum 0.88 u[iU]/mL 0.35-4.94

My PCP tested me for Cushing's she thought my cortisol was high but when I researched the test turned out my ACTH is high - 3.8 and my Cortisol came back low 2.8 mcg/24 h range is 4.0-50.0 I'm very confused about all of this and I feel awful. I am so tired at times just raising my arm or keeping my head up takes too much energy. I have crazy dry skin and a rash/eczema on my legs that will not go away. I am nauseous, light headed, I have no tolerance for stress of any kind. I'm so grumpy and I don't notice it until I have become insane which is not like me at all. I've felt so out of it at times I really thought about going to the ER.

I just don't know what to do. I have an appt with an Endo on the 21st.

Thanks for any help

nf1234 07-14-2014 10:53 PM

Re: Low Cortisol. Is it the Culprit?
There are some people on this forum that can give you some great info but I will try to share the little that I know right now.

If you have 2.8 mcg/24 h urine free cortisol that is not good at all. That is ridiculously low. From what im told less than 40 is suspect. So it sounds to me like your suffering from extremely low cortisol levels. You said your ACTH is high but didn't list the range.

This link is packed with good info.

Apparently I can't post links so just google search diseases-of-the-adrenal-gland. Its from the Cleveland clinic.

Sounds like you have primary adrenal insufficiency. Could be Addison's. An endo will be able to sort it all out for you. Especially with levels that low. Not sure on the thyroid stuff but I can guarantee that low cortisol is making you feel like hell.

Just hang tight until the 21st and try to rest as much as possible. I hope this what somewhat helpful.

GriffyGirl70 07-15-2014 01:24 AM

Re: Low Cortisol. Is it the Culprit?
Thank you so much for your reply I am happy to get any help at all. This has been quite an adventure since my PCP has no clue about any of this. In her defense the more research I do the more I find out that most PCP's don't know much about this rare condition.

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