Living with Adrenal Insufficiency: Understanding Your Condition is Empowering
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- เผยแพร่เมื่อ 15 พ.ค. 2022
- NADF April Live Webinar:
Erin A. Foley-Moudry, MPH, Co-President
National Adrenal Diseases Foundation (NADF)
Smita B. Abraham, MD
NADF Board Member and Endocrinologist at Montefiore Medical Center
Sponsored by
The National Adrenal Diseases Foundation (NADF)
I live in a Canadian Province where essentially you can’t get diagnosed with anything until you are dead. I have been having episodes for the past three or four years and my morning cortisol is dangerously low. I can’t get any further testing done because my doctor is too busy to follow up, so I took this into my own hands. I take L-tyrosine, B5 and large doses of vitamin C along with a ton of rest. Pray for me!
We are sorry to hear you are unable to receive a proper diagnosis. You should reach out to the Canadian Addison Society to see if they can help offer any resources for find an Endocrinologist who can help:
www.addisonsociety.ca/
@@nadf_adrenal wow, that’s actually really good advice. I’ll call tomorrow 🥳
So true 😢 I’m in Canada, and in the same boat. Feel like I’m dying slowly, and my internist will not order further tests, or answer any of my questions. It is so frustrating!! I’m going to try what you’re doing. With Addison’s we have to advocate for ourselves, but it is so difficult when you have zero energy, nor the ability to handle the stress of it.
You are being prayed for😊.🙏🏻🙏🏻🙏🏻
God be with you and I hope you are getting better. Love from another sufferer
Thank you, this was very informative. I have SAI and was diagnosed in 2009. My ACTH was very low. Although it is said that with SAI your sodium levels don't drop and you don't get a tan, well for some reason my sodium and potassium levels drop dangerously, I must take electrolytes and potassium tablets, and I have a tan which especially gets darker when low on cortisol or pre crisis. This has been a puzzle for my doctors. I wonder if anyone else is like me? 🤔
Hello Homa, here's a response from NADF's Medical Advisor: The hyperpigmentation seen in primary adrenal insufficiency is due to the overproduction of melanocyte stimulating hormone in association with the overproduction of ACTH in the pituitary. The MSH stimulates the melanocytes in the skin, causing a darkening. It is not really a tan, which would be pronounced in sun exposed areas. The hyperpigmentation of PAI is all over, including areas not exposed to the sun, and includes the gums in the mouth. If a person with SAI gets a tan, it is due to something else, perhaps other medications that can cause photosensitivity. There are many medications that do that. The tendency to have both low sodium and potassium suggests water overload, medication side effects, or hypothyroidism.
My tan gets darker with stress levels going up, it’s like being the hulk😂
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Also for those of us cannot even run down the garden path who wants to run 3 miles ? Also what is with the hair loss?
I am currently living with Addison’s. I am 80 years old and have been battling this for quite a few years, but did not know what it was. I have also been having issues with the hydrocortisone to the point that I feel like I am smothering day and night. I definitely know that I’m having a lot of side effects from this and I definitely cannot take it. It’s a battle with my Endo chronologist. I have been to the hospital emergency I have seen so many doctors and had to give blood everywhere. I’ll do much better on prednisone and there seems to be a problem with them giving that to me a little bit, I have said I would rather have quality of life than quantity since I will be 81 pretty soon.
We are sorry to hear that you have been experiencing side effects. If you'd like to explore finding another Endocrinologist who can offer you support and perhaps help you make the switch to Prednisone, you can check out the NADF Patient Recommended Dr map: www.nadf.us/patient-recommended-doctors.html . If you have any questions, please reach out to nadfsupport@nadf.us
Great !! Ty!!
Did you ever take hydrocortisone?
What about vitamins?
Wow, how is this for a start?: “NADF does not engage in the practice of medicine, is not a medical authority, and does not claim medical knowledge”. I utterly detest these statements, always passing the hot potato to the so called “experts”. Which is to mean the medical establishment in charge of controlling current medical dogma. Thanks but no thanks.