CIDP and Thyroid Issues
AnonymousSeptember 28, 2011 at 8:33 am
I went for a cervical MRI recently because of some ongoing neck pain. It didn’t show much except some arthritic changes in the neck, but it did show a nodule on my thyroid. A follow-up ultrasound showed two tumors, a rather small one on the left lobe, and a rather large one on the right lobe. I am scheduled to see an endocronologist in November.
Has anyone here noticed any connection between your CIDP and thyroid issues? Somewhere along the line I read something that indicated a greater incidence of thyroid issues in people with auto-immune diseases. :confused:
September 28, 2011 at 8:42 am
I know Graves Disease (high thyroid) is actually an autoimmune disease. I was diagnosed with Graves Disease at age 9 and had treatment for about two years to put my Graves into remission. Now I am 46 and I am still in remission but I am told that now that I have CIDP which is autoimmune my Graves could also reactivate and start to cause me problems. So far it has not and my thyroid is still normal. But I am on the look out for any symptoms that might show that I am starting to have hyperthyroidism again. Treatment would be different as an adult. They would probably remove the thyroid and start me on supplements. When I was 9 they wanted to preserve the thyroid since I was so young. I am not sure if all thyroid disease is autoimmune but I know the form of hyperthyroidism called Graves Disease is autoimmune related.
AnonymousSeptember 28, 2011 at 10:36 am
I had much the same question. In fact, I started a thread on this blog, see this URL:
I also had thyroid nodules, identified at about the same time as my CIDP. In reading through this forum, it struck me that a number of folks also mentioned thyroid issues. So, I raised the question in the forum. Not too many responses, but a couple of them were interesting.
I have talked to my neurologist, endocrinologist, and family doctor. The only semi-explanation I have gotten is that immune system problems can sometimes affect the thyroid. So, maybe they both have the same cause. That is, maybe CIDP does not cause thyroid problems, and vice versa. I have no way of knowing if that is the case and this is just a coincidence, or not.
Incidentally, I had half my thyroid removed, and the nodules turned out to be benign, not cancerous. As I have learned, biopsies are ‘indicative,’ not conclusive. But, the surgery has caused another significant problem, because now my vocal cords do not work properly. I have a raspy, monotone voice (pitch inflexibility, as my speech pathologist calls it). But, the worst side effect is that they do not open properly, so I have difficulty breathing. On top of the CIDP, this makes any exercise very difficult.
So, my recommendation is to think twice, or three times, before any thyroid surgery.
AnonymousSeptember 28, 2011 at 10:36 am
My thyroid is out of sorts and it’s my belief that it may have been caused by GBS. I recently had an uptake scan and ultrasound and was advised that I tend to fluctuate between hypo and hyperactive thyroid functions, which matched the bloodwork I’d had for the past few years. Unfortunately, that makes treatment difficult until/unless the thyroid is removed. I’m not moving forward with radiation or removal of the thyroid unless it’s medically necessary as there were no nodules and the thryoid issue hasn’t yet affected anything except my weight (lately in a positive way if you think of any medical issues as positive). 🙂
AnonymousSeptember 28, 2011 at 5:10 pm
I was diagnosed with an underactive thyroid and the dr found a small thyroid tumor several years prior to my dx of CIDP. After the CIDP, and when I was on pred, the thyroid tumor began to grow and rub against my vocal cords. I had a partial thyroidectomy (left side). Tumor was benign.
My HUGE advice to you is this: if you do end up having to get surgery, get a plastic surgeon to do it. I learned my lesson after a hack sewed up my leg with dissolvable stitches after a nerve and muscle biopsy. I got a very bad staph infection and my leg is scarred up from that. My thyroid scar? You can’t see that at all.
AnonymousJuly 27, 2012 at 1:12 am
Hi, I am newly diagnosed (this week) with CIDP. They found multiple nodules on my thyroid during a c-spine MRI, and now i am told that I must have a consult and biopsy based on yesterday’s ultrasound. This is my third biopsy in a month (benign breast tumor, precancerous colon polyp), so i am concerned about these multiple masses growing in my body. i realize that the odds of a problem are low, and a recent TSH test was well within range. The suggestion about plastic surgery is a good one, since it is right on my neck. I have noticed some symptoms that coincide with hyperactive thyroid, but a recent TSH test was well within range. I just scheduled IVIg treatment for next week, and now have to put that on hold until after the biopsy is done. I guess it makes sense; I’m still trying to learn about these things. How much does the thyroid function affect response to treatment? Or progression of symptoms? Do people tend to have different or worse side effects if they have thyroid issues? Just curious about others’ experiences, as I have a family history of thyroid problems.
Thanks, and hello!
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