High ANA / Sed Rate

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Firefly20
New Member


Date Joined Jul 2015
Total Posts : 12
   Posted 1/14/2016 3:24 PM (GMT -6)   
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)


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 1/14/2016 3:39 PM (GMT -6)   
Sigh. I get so tired of rheumies that diagnose based on the absence of a single symptom. Of course you can have Lupus without nose/mouth sores -- and besides, now you have a tongue sore, which in my mind qualifies as a mouth sore!!!

And a positive ANA just means you probably have an autoimmune disease, and more evaluation of your symptoms is necessary to determine which one.

Lupus is diagnosed by having 4 of 11 specific symptoms - see www.lupus.org for more information on the symptoms. One way to make sure the rheumy you use is well-versed in Lupus (and other auto-immune diseases) is to find the local chapter of the Lupus Org. Then contact the local chapter and get a list of the local Drs who are active on the advisory board. These are the Drs most interested in helping you.

Since you can't take steroids, what do they use for the inflammation from the Episclerities? Do the steroids give you the feeling of a racing heart (happens to a lot of us), or does your heart rate actually increase?

There are other treatments -- Plaquenil inhibits disease progression, Cellcept/Imuran/MTX help control disease. Then there are bigger guns, Benlysta and IVIG.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Firefly20
New Member


Date Joined Jul 2015
Total Posts : 12
   Posted 1/14/2016 3:52 PM (GMT -6)   
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

Jake'sMom
Veteran Member


Date Joined Jan 2015
Total Posts : 1066
   Posted 1/15/2016 8:51 AM (GMT -6)   
Hi Firefly. I'm sorry you're going through so much.

I'm sort of in the same position. I have shown my rheumy pics of my nose sores, and have actually had mouth sores when in her office. After looking in my mouth, she looked at my paperwork, and said, well your last ANA was negative.

Well, the one before that was positive. Even though I have all of the symptoms, she is really only looking at blood work. It's frustrating to say the least. I'm so exhausted that I don't even know if I can keep fighting for answers.

I hope you find the answers you need. This forum has been such a great help to me. I've been told my members here that they had to fight for years before they were diagnosed. I just wanted you to know you're not alone in your fight for answers.
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