Autoimmune - Advice?

Your situation is extremely complex. Have you heard about functional or holistic medicine? This is a healthcare practice that looks for the root cause of the symptoms you are having. The functional doctor will get a very detailed health history from you. You will receive test that medical doctors don't routinely order . The goal is to get your body into a healthy state so your symptoms are reduced. Functional doctors are in addition to medical doctors. Typically insurance wont reimburse you for the care they provide because functional doctor usually are not in any PPO list. I have 3 chronic illnesses. an autoimmune disease, osteoporosis and cancer. Both my GI and Oncologist support my work with my holistic doctor. I have followed all the recommendations of the holistic doctor. Its difficult because my holistic doctor although he is also a medical doctor prefers to use lifestyle changes over prescribing medicine. That means I have to do all the work. I have found this to be a game changer in my overall health and with dealing with my diseases.
Here is the good new about holistic medicine. It is designed to teach you how to be and stay healthy. My holistic doctor says that eventually I won't need him. so while the upfront cost my be steep the long term results have been amazing. I he is right. I am at a point that I'm just checking in with him on my progress. The cost of his care is minimal at this time.

I’m not a doctor, let me start there, but it sounds to me with weight gain that you could possibly have Hashimoto’s. I suffer from it and also Hypothyroidism for which I take Synthroid 75 mcg. I would ask your doctor to run a Thyroid Panel and include testing of TSH, T3-free, T4-free and TPO Antibodies (which is where Hashimoto’s shows up). My husband and I were doing the Weight Watchers Diet and I was gaining a pound a day and he was loosing! That’s how I knew something was drastically wrong. I am feeling so much better and I also have eliminated eating gluten, dairy and soy which are big no no’s with Hashimoto’s. I wish you well and good luck!

I have Sjogren’s Disease, RA, and lupus. Have had many weird symptoms which were finally diagnosed (by my 4th rheumatologist!) as Sjogren’s.
Check out the Smart Patients and Sjogren’s Advocate sites for information and support
Sjogren’s is always systematic but many doctors don’t know that.
Good luck

How did you get diagnosed with dysautonomia? For my diagnosis I had three small punch biopsies in my leg. My EMG/ nerve conduction test showed autoimmune severe axonal sensorimotor dysautonomia peripheral polyneuropathy. Since the small fiber was positive I was tested for cardiac autonomic neuropathy a one month holter monitor test that showed I go between bradycardia/tachycardia and I had to take blood pressure three times a day. Normal 120/70 high 160/110 for two weeks dropped 96/60. I kept passing out. No treatment for it.
Small fiber neuropathy affects the autonomic nervous system.
I stay cold my body doesn’t regulate my body temperature so I stay cold.
It took the rheumatologist over 20 years to diagnose my autoimmune symptoms lupus Hashimotos sojourns and connective tissue disease.

https://my.clevelandclinic.org/health/diseases/6004-dysautonomia#overview

06/16/2025 Hi again all! Thank you again for all your suggestions and support. I'm sorry that I haven't been able to reply/react to everyone.

So the rest of my panels, imaging, etc. that I was waiting on came back normal. Chest CT looks good, no indicators of sleep apnea or any type of myositis, and I also just had Lyme ruled out. I'm glad to be ruling things out, because that affirms my original suspicion that dismissing the high indicators for RA as "red herrings" is not a good idea. Also, as I have been keeping better track of my symptoms as of late, I have noticed more joint pain/cracking/weakness (especially pain in my back and weakness in my knees).

My cardiologist did a deep dive into some literature for me, and he said that even though there isn't a ton of research right now, it IS possible that RA could cause my heart and lung symptoms and/or make them worse. He just referred me to an electric specialist that he knows so that we can see about getting on a better medication for my Inappropriate Sinus Tachycardia, as the beta blocker I'm currently on isn't helping as much as we'd like. I did another heart monitor recently, and although my average heart rate was 95, my highest was 193. I'm not doing any intense exercise (it's hard enough just trying to get through an average day - forget working out), so that is definitely not normal and we're going to see if the new medication will help. I was luckily able to get an appointment for later this afternoon.

I read that if the heart and lungs look clear but symptoms like tachycardia and dyspnea are still present, it also might be worth checking out my circulatory system. I'm not sure what specialist I would need to see for that, but I'm planning to ask my PCP about it next time I see her.

I'll try to update when I can!

I've also considered Hashimoto's, but every time I have a TSH on my blood panels, it comes back normal. I'm not sure my doctors would want to order more tests since that one always looks good (and it's a bit of a pain trying to push for more tests when doctors don't think it's necessary - I'm already a little burnt out from advocating for the blood tests I've had so far).

Hashimoto’s is not your Thyroid, it’s an autoimmune disease. Have your TPO Antibodies tested and T3-Free and T4-Free. Your TSH numbers can be normal, but an antibody shows up in testing TPO Antibodies. The TPO Antibodies should be 0, mine were 600! I’m sure yours are high too, which is why you have body inflammation. Pretty easy to fix if you really want to.

Have you had reverse T3 and. T4?
Hashimotos is positive thyroid peroxidase labs not TSH..

So sorry you are dealing with this. I was just recently diagnosed last year. I’m 44 although I suspect I’ve been dealing with this since my 20’s, no dr has ever tested me for anything shamefully. I also deal with high heart rate and being winded after hardly doing anything. However other than my ANA being positive everything is else was negative. My X-rays were a dead giveaway however as well as all of my other symptoms. So I am seronegative RA patient which is harder to diagnose. Also I have lupus symptoms currently but again testing negative but am being treated for both. As well as sjrogens, systemic sclerosis, Hashimotos. Two years ago I had a low back fusion and that failed. The bone graft failed to take due to the RA. That was when I was first diagnosed, when they were looking into the causes of why it failed. And my life has been upside down ever since. It’s scary. Everyday is different. The flares are horrid. The brain fog is crippling some days. You are not alone. I’ve learned that chat gpt is actually a great help with learning how to deal with this, how to talk to drs, how to get answers, reminds me I’m not nuts, my pain is real even when the drs gaslight me, I know it sounds silly but it’s true. Also I use bearable the app to keep track of symptoms everyday and it connects the dots on what trends are happening in your life, based on good you eat, how much sleep you get, meds you take, exercise, stress, you name it. Just thought I would tell you about some tools that I use that help anyways.