Anyone else have multiple autoimmune diseases?

I am in awe of the strength of you who posted here. I have Long COVID, which has mimicked several other autoimmune diseases. It has been 3 years and as you all know, the symptoms of these can turn your life upside down. I struggle daily with different symptoms, but the worst is in the morning when I wake up and feel terrible, poisoned actually. Meds are the only thing that seem to help the physical symptoms. I am just trying to take today and do what I can. I am grateful for all of you who posted!

I have a long history of Hashimoto's disease (hypo), and just recently diagnosed with: Autoimmune Metaplastic Atrophic Gastritis (AMAG), Primary Biliary Cholangitis (PBC), Rheumatoid Arthritis (RA) and Sjogrens. As a side note they also diagnosed Chronic Rhino Sinusitis with Nasal Polyps (CRSw/NP) with Eosinophilia and fibromyalgia. It took almost 4 years to get to this point… sooo many different doctors/tests but finally the Mayo Clinic’s program to evaluate undiagnosed problems gave me my answers. They also told me certain autoimmune diseases run in packs. I too was a “lucky” one and have started a larger pack than I wanted :-/
I’m just starting treatments, so still feel like I’m dying inside and the pain, fatigue and brain fog make life very difficult right now. Trying very hard to stay positive but also knowing my old life is gone. I now get to start something new that’s gentler, calmer and more centered on moments instead of stressful, worrisome with constant activities. I will miss my old life but look forward to the new adventures ahead!

@segreene65
So very sorry to hear of your struggles but thankful to hear that you found Mayo Clinic helpful in providing current treatment. Know very well how discouraging it can be as I know and feel your pain, but please continue to be strong, and also know how debilitating fatigue and BRAIN FOG can be challenging daily. Praying for you this treatment will be successful, you will be feeling better, less fatigue, and able to enjoy this beautiful fall season.

rheumatoid and fibro

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

Hi,
Been a minute since ive been on here and realized I do need to get back involved. Nothing like talking to other who "get it". I've had such a journey these past few years healthwise, and not the fun kind of journey I love to take (love to travel).

Diagnosed with Polycythemia vera in 2023, one of my worst health years ever (besides the one before finally diagnosed properly with SIBO, now manage it appropriately). However, I was Jak2neg and the 1st 2 oncologists both insisted I had PV. I had a gut feeling I didn't, the 2nd Hemo/Onc doc would NOT listen to me. BP going haywire,high to way low, took my hemoglobin down to 11 and I could not get up one flight of stairs without multiple rests (I was in a 3 story townhouse). Got a 3rd opinion, this oncologist listened to me, we scheduled the BMBX (nasty test but its over pretty quickly) and low and behold, I've got no sign of any blood cancer.

Very happy of course but still to this day we dont know why my hemoglobin tics up, its back up to 14.9 (high end of normal) and my hands and feet are hurting a lot again, which is one of my earlier symptoms. However, I was also diagnosed with Hashimotos which caused Hypothyroidism, which was apparently causing my fatigue, pain etc. I had previously been diagnosed with ocular rosacea, not pleasant when it fairs up.

Autoimmune definitely runs in packs, ive read and heard, often comes in a 3 pack.

The more I read about the help Mayo has provided many of you, makes me think if I continue to not get answers for my secondary Polycythemia and possibly undiagnosed Autoimmune, I should seek their help.

My dear friend always tells me, you need a Dr. House. I've started to chart/graph test results out to see if I see patterns, I journal most weeks to document what I ate, how I felt etc. to watch for patterns of I get a flare up.

My challenge is, I'm never sure if a flair up is the Hashimotos or higher hemoglobin or maybe long covid which not one doc has brought up. If I have a SIBO flair up, I know exactly what that is and it ain't fun...but I always say, it could be so much worse.

Is there anyone else that gets tired of hearing, well you don't look sick? When you live with chronic pain, its unfortunate, but you get used to it. I'm a queen of masking, did it so well I was not diagnosed with ADHD until I was in my late 50's. My entire childhood and life really, made so much more sense to me learning how nuerodivergent minds work. I always felt broken, different, kind of wierd which honestly I'm proud of to this day and will never change. I've always said since I was a kid, let your freak flag fly and who cares if people don't like it.

Be well everyone, we're all in this journey together 💪 ❤️

Wendy

PS, come hell or high water, I will be on the slopes this winter. Maybe not 40mph anymore but I'll enjoy the slower glide either way ⛷️

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 Welcome to Mayo Clinic Connect! Members with similar issues should come to assistance soon. Were you with the military in Germany? You’ve had many diagnoses since your first one! I’ll let the members come to your aid with their experiences.

Thank you Becky, for your response. No, I am not affiliated with the military. I immigrated to the United States in 1991 at the age of 42 without knowing anyone, and later became a U.S. citizen—something I’ve never regretted.

Due to a complex (just 544 pages from UNMH alone) medical history, I now regret returning to Germany in 2019. I've found that accurate diagnoses are often limited, and there seems to be a lack of comprehensive information regarding pharmaceutical cross-interactions—particularly involving fluoroquinolones like ciprofloxacin, which unfortunately led to anaphylaxis in my case. This has been further complicated by pre-existing conditions and inconsistent medical support.

While reading about your CLIPPERS diagnosis and its symptoms, I couldn’t help but wonder whether involvement of the cerebellum and midbrain orbital cortex (linked to vision impairment) might also be relevant in cases of Chiari Malformation Type I. An MRI with contrast revealed Chiari in 2008, which led to decompression surgery in 2009, though unfortunately, it brought no improvement.

Diagnosed MS 40+ yrs ago Mayo Clinic. Since then, added Lupus, Sjogrens, RA, fibro. Battling bronchiectasis for past 10 yrs. Have remained very active all these yrs when I can. Mayo has terrific teams working with my care