High ANA / Sed Rate

Hello All,

First off, I really appreciate you taking the time to read this. I am in a stage where I just wanted to hear your thoughts/experiences, here is my story in the shortest form I could say.

about 15 years ago, I was diagnosed with Hashimoto's Thyroiditis through an FNA. Years later, I had half of the thyroid removed due to it's size (the other side was normal). about 5 years later, the other side increased too large and I had it removed and it was found that I had a 1 cm tumor / Papillary Thyroid Cancer. I have been cancer free since surgery.

I have dealt with swelling of the feet/ankle (especially the right one) off and on for years. I have dealt with joint pain, which I always attributed to my thyroid disease. Approximately 3.5 years ago, I dealt with severe digestion issues (pain/running to the bathroom/lost almost 60 pounds), which in fact were so horrible, that I could only digest chicken/potatoes/bread/crackers for one year. During this time, I was tested for Crohn's (colonoscopy) and Celiac (2 upper gi's) and both were negative. I then went gluten free, and I seemed to improve however I could not tolerate alcohol or spicy foods. Note: the digestion issues started after having Mono. I have had mono 5 times in my life, I am 41, but tested negative for EBV. I also experienced a lot of hair loss at this time.

Last year, I had Episclerities 5-7 times (my first time dealing with it). When I have Episclerities, I feel my whole body in a flare. I am so fatigued, joint pain, headaches, foggy head, etc. Along with this my monthly periods are SO heavy with a lot of clotting (I have never had that). I am currently on disability because I cannot get a break from these flares, they are just hitting me one after another and lasting awhile. I have also had an MRI of the brain last year, which was clear.

My bloodwork in December 2015 showed a positive ANA of 1:1280 Diffuse and a sed rate 35 (have been between 28 - 47 last year). DNA & ENA negative. To my knowledge, I have never had a positive ANA in my life. My primary care & eye pathologist feels that this may be Lupus. My Rheum said my positive ANA was caused by Hashimoto's, and said it is not Lupus because I do not get sores in my nose/mouth. My Endocrinologist said he doesn't think that my Hashi's caused the positive ANA. Long story short, I am getting a second opinion from another Rheum doctor.

Oh, last but not least I am dealing with a red sore on my tongue this week and today it feels swollen. I have had a butterfly rash on my face for many years. Don't get me wrong, I welcome negative results, but am feeling frustrated by all of these symptoms and no clear answers or medications. I cannot tolerate steroids with my thyroid for some reason, they make my heart race. I have been taking Advil and a NSAID drop for my eyes to relieve inflammation. On top of all of this, I have been dealing with some really bad anxiety attacks, which I have never dealt with previously.

I am sure that I have left things out, please let me know your thoughts and if you have any questions!

Post Edited (Firefly20) : 1/14/2016 2:30:28 PM (GMT-7)

Thanks, Lynnwood! I thought that was pretty ridiculous, too. Oh, and the Rheumy said that my ANA was not "that" high. My primary care and eye doctor said it was "very high". When the sore on my tongue showed up this week, I almost just laughed to myself. God must be working in some odd and mysterious way. Besides, from my experience with auto-immune diseases, my impression is that they never completely fit into a "check-mark" symptom list, because symptoms always can very from person to person. But, I completely understand it's like fishing in a large auto-immune pool to find the correct diagnosis. I feel like the Rheumy totally brushed off my symptoms as I sat in her office with barely enough energy to get there and an eye that looked like it was out of a scary movie.

We are trying to control the Episclerities with Ketorolac Tromethamine Ophthalmic Solution, I believe it's a generic for Acular, a non-steroidal anti-inflammatory drug. It does actually help with the inflammation/irritation. Of course, it never heals overnight, it takes awhile. It doesn't help that the rest of my body is flaring, as well. My heart rate increases to the 140's when I previously took steroids. Although, that was before my last thyroid surgery, but I am honestly afraid to take them again.

My PCP talked about Plaquenil, but wanted me to be evaluated by Rheum. I just emailed him and told him that I will be seeking a second opinion.

Oh and I took a photo of my tongue sore. I feel like emailing it to that Rheumy, lol! :D