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Addison's Disease: Tired of being tired

Diabetes & Endocrine System | Last Active: Aug 13, 2023 | Replies (23)

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Hello @spice

Welcome to Mayo Connect - I see that this is your first post and we are glad that you have joined our online patient support group.

I am sorry to hear of your many health issues and the resulting pain and fatigue. Many of us here at Connect also have a mixture of health problems and medications and we understand how frustrating it is to try to go on with life in the normal fashion - sometimes the energy just isn't there and the pain can be a distraction to everyday life. I would encourage you to discuss these feelings with your doctor - there may be something that can be done to help you.

I am wondering if you have discussed these problems with your primary care doctor as well as an endocrinologist?


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Replies to "Hello @spice Welcome to Mayo Connect - I see that this is your first post and..."

3 different endocrinologists and my primary has also been involved with the treatment. Do you know of any other treatments for addisons besides prednisone. Hydrocortisone makes me violently ill. but the way to treat the disease seems to be cut and dried for me it is putting a square peg in a round hole. Its the replacement of corticoscal streroids (sp) but I have read of fleurocostal again (sp) that I may suggest. My first concern for now is with all the these things that could effect my immune system is there a possibility the lymes is causing problems or has the cortisone taken me down further? The steroids had caused a weight gain up to 250 a dietary change and I am down to 190 plus dropping all my diabetic numbers/indicators. Sometimes it is just hard to stay positive and work hard to achieve most people take for granted.

@spice Hi, My friend! I assume you have done some things I will suggest, but just in case you have not, you might try. Go to these sites, Enter Addisons in the search engine, and see if there is anything you have not learned before. And go to their contact area and try to talk with someone there. Some will talk with you, some will not. http://www.AddisonFoundation.org, Addison.org, MayoClinic.org, Alnylam.com, City of Hope.org, FredHutchinson.org, Each of these, and many more, will have portions of their sites dedicated to patient education. My own personal favorites are Mayo and Alnylam. When you go to their sites, many will have videos you can learn a lot from. Read any medicine bottles you have from meds you have used for Addison. Try to contact the maker through their site. Ask Mayo or Stanford or Alnylam or Sloan-Kettering who might be working in the area. Get into NIH.gov (National Institutes of Health) Library. Yes, some of this stuff will be very technical and advanced, but read the bibliography at the end of the article for more resources.That is where I would start if I were just starting now. But go first to the Addison('s?) Foundation. Ask your doctor or Google for their site. But for sure, talk with Alnylam.com, and ask them who might be working in the area. And tell us how things go in this matter. And don't be afraid to use my name as reference. They will think it is someone they should know. Thanks. Karl D.Min.