Autoimmune - Advice?
So my therapist recently suggested that I (23f) attempt to connect with fellow people dealing with chronic illness (particularly in the realm of autoimmune diseases/disorders) because of the frustration that I'm currently dealing with pertaining to my symptoms, potential diagnoses, etc.
Anyway - here's the situation. After almost four years of experiencing a sudden onset of symptoms - such as tachycardia, dyspnea on exertion/feeling like I can't get a deep enough breath, unexplained weight gain, excessive sweating/inability to regulate temperature, more recently some upper back pain and cracking joints, general fatigue, etc. - I'm finally in a place where I have a decent enough job and health insurance that I was able to get a rheumatology referral.
I went to the rheumatologist, and, after speaking with her for all of ten minutes, she told me she didn't have a very high suspicion of any autoimmune disorders. And as the blood tests that we did that day started coming back normal one at a time, that initially seemed like a fair assessment. Totally in-range thyroid, rheumatoid factor, CMP (except for ever-so-slightly low Carbon Dioxide, but I was told not to worry about that since it was barely out of range), C Reactive Protein, Sed Rate, and CBC+PLT+DIFF. But then my AntiCCP came back through the roof. For reference, a negative AntiCCP would be less than 20 units, and a "strong positive" would be anything greater than 59 or so. Mine was 133. In short, we're now looking at Rheumatoid Arthritis.
Honestly, at first, I was actually rather relieved that we at least had a lead. I'd been diagnosed with dysautonomia and IST at my cardiologist a little over a year ago, and my pulmonologist and I discovered about nine months ago that my windpipe is very narrow; but we couldn't really determine a reason why for any of these things. So I thought that maybe RA could be an explanation. But now I have all my specialists telling me that they don't really know if RA would be causing my specific symptoms or not, since RA is more about joint inflammation (from my current understanding).
In terms of testing I've already done, all my EKGs/ECGs always come back clear. My latest exercise stress test was technically fine (even though I felt like I was dying the whole time) - I just had diminished exercise capacity, increased wall motion, and my left ventricular wall segments showed thickening. A chest x-ray I had a while ago showed clear lungs. I just recently did x-rays of my hands and wrists, and there's no joint erosion so far. I did a PFT with pulmonology last year, which is how we found out about my airway being narrow; and I just did a repeat PFT that I'm currently waiting on results for. I'm also waiting on results for a sleep apnea study (if this is relevant, my left leg has been Charlie-horsing quite frequently lately, especially in the middle of the night). I've had a tilt table test done and it was normal, so this probably isn't POTS.
Also, I don't know if this is important, but I run out of breath/sweat very easily even when doing mundane tasks like dishes. Going up stairs is especially difficult, even just a single flight. Movement makes me feel overheated, even in the winter. I'm currently on a beta blocker, but my heart rate still gets higher than I would like when I'm moving at all.
Since I'm already in the thick of medical things, I want to ask my rheumatologist for some follow-up tests to rule out any other possible autoimmune disorders, because I want to make sure we're covering all our bases, since the ways in which my body is malfunctioning on a daily basis still don't make total sense to me. I've been doing some research and thought about asking about myositis, but I'm just not completely confident in advocating for myself at this point, since I feel like I still don't really know anything. I'm also wondering if y'all have any other suggestions for other possible problems I could pursue asking about? I'm just confused and stressed out and a little sad.
If you stayed this far - thanks for listening.
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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