Anyone else have multiple autoimmune diseases?

Thank you for providing this platform.

I am a patient with adrenal insufficiency, initially diagnosed in 1979 in Germany, where cortisol levels were already showing irregular patterns. In 2007, after relocating to the United States, I was re-evaluated and diagnosed with a cortisol level of 1.0 µg/dL following an ACTH stimulation test. I was subsequently placed on a maintenance dose of 5 mg Prednisone.

After returning to Germany in 2019, and during the COVID-19 pandemic, I underwent another ACTH stimulation test in 2021. This led to a change in treatment, switching from Prednisolone to Hydrocortisone.

Since this adjustment, I’ve experienced new and fluctuating symptoms. Most notably, I now show elevated morning cortisol levels (up to 18.5 µg/dL), followed by profound fatigue approximately three hours after waking.

I’m wondering whether variations in the timing or method of Hydrocortisone administration could be contributing to these symptoms. Additionally, after receiving the mRNA COVID-19 vaccine in mid-2021, I was diagnosed with Rheumatoid Arthritis, Lupus, and Antiphospholipid Syndrome (APS). Could these autoimmune conditions also be playing a role?

Further thyroid testing has shown multiple dark nodules, and both T3 and T4 levels are elevated.

I would be grateful for any insights, shared experiences, or guidance from others who may have faced similar situations.

Kindly,
SWA

I was diagnosed with Cogans syndrome a form of vasculitis about 22 years ago, now also have autoimmune hepatitis and primary biliary cholangitis. I had a very big scare one year ago with a bout of C-diff followed by ruptured bowel, 5 abdominal surgeries, 4 months in the hospital, had 6 months of TPN, still getting better everyday. These autoimmune diseases are not for the weak. I am blessed with supportive spouse and family. I have not worked for over a year still trying to get financially straight. Feel like that will never happen.

@swalex Autoimmune Diseases: I have 4 autoimmune conditions. No one else in my family has any, going back 2 generations on both sides of my family. They include MS, Grave’s disease ( thyroid), Sjogren’s Syndrome, Addison’s Disease of the Adrenal gland. In answer to your question for adrenal gland insufficiency, I take Hydrocortisone three times spread out in the day. 10mg in the morning, 5mg @2 pm and 5 mg@ 5 pm. Yes, I still get extremely tired mid afternoon, which can only be helped with an afternoon nap.
They also prescribe Fludrocortisone..
Also have severe osteoarthritis which makes it painful to walk.
I hope they get more understanding of Autoimmune Disorders.

@lmpa65 oh CDiff! I’ve had it 5 times! It’s awful. Once, it was so bad, I was in ICU and almost didn’t make it. I did get the fecal transplant and had it once after that. I have 4 autoimmune diseases and so, balancing it all is a full time activity!

I've heard many others who are living with multiple autoimmune diagnoses. I'm glad you still golf even if it's not as much as before. I live with 6 autoimmune illnesses now. They started 30 years ago so that is about half of my life. If I put off finding what brings me joy I would have never gotten to it! Like you, I find I can be involved in my life and joy if i don't expect myself to be the same as I was before becoming disabled. I think if I had just one autoimmune illness, I might have been able to continue my life with work, travel, some kind of sports. But when there are competing illnesses! I am always coping with pain and fatigue. I like that you say "good news is..." because for me there have been many good outcomes in my life because of illness. I've learned to be in the world and accept who I am: I've had the time and focus to become a published poet, I really enjoy following baseball and never miss a game during the season (there's one just about every day!).

I'm wishing you well with your breathing , your "biggest problem." That sounds very challenging. I'm glad you posted!

Raynaud's, Limited Scleroderma, Mixed Connective Tissue Disease, Lupus, and Fibromyalgia. On top of that, Chronic Kidney Disease (starting GFR was 39 yet with dietary changes I've gotten it to high 60's). Biggest issue is fatigue. I am chronically tired. And sleep is not restorative. You said your breathing interferes with golf. Have you had a breathing test? I get one every 5 years or so just in case.

@jw9 what autoimmune diseases do you have?

@noelcs
RA, Psoriatic Arthritis, Sjogren's Syndrome, Lichen Sclerosis, Hashimoto's Thyroiditis, Undifferentiated Connective Tissue Disease, Hypermobile Ehlers Danlos....what I've learned to live with. First onset in mid-twenties thru currently in my mid-60's