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Help with understanding test results
Autoimmune Diseases | Last Active: Jun 29 6:13pm | Replies (79)Comment receiving replies
@rebaba
I wish you the best getting answers. I have a new rheumatologist appointment early July and searching for answers for 8 years. I have been through a couple rheumatologists that were not very helpful. I had autoantibodies show up 2 separate times 2 years apart for Hashimoto’s thyroiditis, SLE and Antiphospolipin Syndrome (APS) which is tied to blood clotting risk. The first Rheumatologist said nothing to me about these autoantibodies and I only noticed them more recently. My second rheumatologist didn’t do really extensive testing like the first and sent me away with nothing (was a waste of time and money). My new neurologist seemed very concerned about my untreated APS and referred me to a new rheumatologist. I am being treated for Hashimoto’s hypothyroidism now but took removal of thyroid lobe /nodule and pathology to finally get officially diagnosed.
I also have chronic fatigue plus many other issues including lung. Have you ever had COVID vaccines or the viral infection? I had both and ever since, I have worsening breathing problems. It is hard to take in deep breaths and now have sleep apnea. My sinuses also seem constantly inflamed so it is hard to get enough oxygen only breathing through my nose. My APS plus COVID makes me think I am dealing with micro vascular/endothelial cell damage from micro blood clotting which is affecting my oxygen exchange from lungs to heart/cardiovascular system and muscles which makes me extremely fatigued.
Replies to "@rebaba I wish you the best getting answers. I have a new rheumatologist appointment early July..."
How about seeing a hepatologist?
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@dlydailyhope
Yes, I *suspect* I had Covid months before it became publicly known. My breathing problems first began late in 2019, when I began having trouble breathing especially at night and it seemed no one could help me. Finally, an urgent care doc prescribed prednisone (I think) and an antibiotic-it took months to bet better- but have never been "my normal" again. I believe this was just months before covid was made public. After that experience, I have gotten every covid vaccine -and keep an oxygen meter handy.
In the few years following, I saw a nurse practitioner in a pulmonology office was given different sorts of tests and prescribed more prednisone and Breo inhaler.
I also got help from an ENT (in shining armor) and have been sleeping like a babe ever since. In addition to removing nasal polyps, he also surgically widened my nasal passages for me. I tried to find the medical term for the widening and couldn't, but the widening procedure lasts a lifetime, and I am ever so grateful to him. I had no idea that such a procedure even existed! So, since then, I can get a lung and sinus flare up. which is currently the case, and still sleep at night (along with my Breo inhaler). The surgery, and this particular ENT, made a world of difference for me. A different ENT I saw earlier didn't want to do surgery to remove my polyps because he "didn't want to put me through that". Instead, he loaded me up on beaucoup amounts of steroids with devastating side effects. (makes me want to cry still)
Earlier, in desperation, I tried to get a sleep study done but was put-off by the "fly by night" mannerisms of the outfit (no pun intended)-but no longer need it because of the nasal surgery.
Like yours, my lung and sinus problems also seem to be "inflammatory".
I'm not sure how fatigue "connects" to oxygen levels though. I had an 8 month period of routinely 98% oxygen levels (without the Breo), but still had loads of fatigue and no stamina.
Your breathing problems (that keep you from sleeping) sound a lot like mine did. Have you sought any treatment for the breathing problems? I got no help from my prim care doc and had to take myself to a pulmonologist and Ent. For sure not being able to sleep makes everything even worse. I think at one point I had to focus on solving that alone and may have succeeded with that, anyway. (stay hopeful)
It could be that Covid is responsible for ending my decades of relative wellness and the start of my breathing problems (and I suppose the "flags" on my recent blood tests). Maybe the Rheumatologist can help with that theory.