CIDP and thyroid problems

    • Anonymous
      June 9, 2010 at 12:36 pm

      About six months ago I was diagnosed with CIDP. About the same time, just by coincidence, it was discovered that I had two fairly large nodules on my thyroid gland. A biopsy was done on the nodules at the time, and they were benign.

      Just a few days ago my endocrinologist ordered a new biopsy on one nodule, which had gotten noticeably larger. This time, it came back as cancerous. I am talking to a surgeon in a few days, and will probably have part or all of my thyroid removed, followed by radioactive iodine therapy.

      In browsing through this forum, it seems to me that there are a certain number of folks with both CIDP and some sort of thyroid problem, more than I would guess just by random chance.

      Has anyone heard or read of any sort of connection? Does one cause the other, or is there a common cause? And are there issues with treatment that I should be aware of?

      Thanks for any comments or feedback.

    • Anonymous
      June 9, 2010 at 1:15 pm

      That is very interesting. I had an MRI in December which showed a cyst on my thyroid. It appeared benign, so no biopsy was done. Now I am re-thinking this in light of your post.

      Another commonality among CIDP sufferers that I have noticed is a history of back problems, such as herniated disks, stenosis, spondylosis. Alice on our forum is also interested in shared precursors to CIDP.


    • Anonymous
      June 9, 2010 at 2:49 pm

      This is interesting because my neurologist had some blood work done on me and said that there was something about my thyroid, some test that came back slightly high and it wasn’t the typical blood work tests. He did have me go in for an ultrasound of my thyroid, but I have not heard yet on it. I couldn’t quite figure out what he was talking about in regards to my thyroid. He said something about me being possibly exposed to some sort of thyroid virus. ??????. What I would like to know is how would CIDP effect the thyroid. I will ask my neuro next time I see him.

    • Anonymous
      June 9, 2010 at 8:19 pm

      When my nodules were first discovered, my endocrinologist had blood work done. One reading (can’t remember which one) was slightly high, but she said it was nothing to worry about.

      One thing that strikes me about this is that a hypoactive thyroid causes lack of energy and weakness, which sounds similar to my symptoms with CIDP. At the very least, I want to make sure I don’t compound my weakness problems with further weakness caused by a lack of thyroid hormone.

    • Anonymous
      June 14, 2010 at 7:29 pm

      Well, I saw my neurologist today and he gave me the results of my blood work and my thyroid ultrasound. My blood work came back normal, but the ultrasound shows multi nodule goiters. I was really surprised because I had been tested before with the blood test and it always came back normal. My neuro could not understand why I had so many symptoms of thyroid problems, such as fatigue, sweating, craving carbs, loss of hair, dry skin, and cramping in my legs, so he went ahead and had a ultrasound done on my thyroid. He is a little like House, but not quite so rude. I have to see an endocrinologist and have a thyroid scan done.


    • Anonymous
      June 17, 2010 at 12:07 pm

      Hi Lovescats,
      This is very interesting. I had a similar experience. When they first found my thyroid nodules, I thought: “Aha! This explains a lot.” I had had a lot of the same symptoms: fatigue, dry skin and eyes, leg cramps, weight gain. I figured these must be due to the thyroid issues.

      Then, they did blood work, and it all came back normal. My doctor said the symptoms must have been caused by something else, even though they were all consistent with under-active thyroid.

      Now I’m rethinking the whole issue. The fatigue could be due to the onset of CIDP, I guess, but I have never heard of it causing the other symptoms.

    • Anonymous
      June 18, 2010 at 9:49 pm

      A basic thyroid test that just picks up the general #?s, a basic T-3 & T-4 test which sorts out the two key thyroid #’s, a more detailed Free T-3 & Free T-4 test which is even more accurate. Lastly is the Autoimmune Free T-3 & T4 test- which will tell you if you are truly functionally hypothyroid [Hashimoto’s disease] or hyperthyroid [Grave’s disease]. Both once truly diagnosed can be treated, but the process of ‘trial and error’ [yes it’s like CIDP testing] takes a while, but it’s less complicated.
      I had hypo thryroid issues long before I got the CIDP. It usually happens in women as they enter perimenopause and goes downhill from there. But, It also happens to men for unknown reasons. About 20 months after my CIDP onset I had a super hypothyroid issue and my thyroid supplement meds were adjusted a great deal. One year after that I was diagnosed w/Hashimoto’s = a dead thyroid. About 5 years before the CIDP I was checked for goiters, and they too were benign at THAT time. To confuse things further? I was going thru a breast cancer diagnosis the year before I got the Hashimoto’s diagnosis. I was fatigued on an off for a loong time! More so with the CIDP onset for sure!
      Back up a bit tho…Could they all be related? Yes, maybe. Not? Yes, maybe. There are too many variables as to what we were tested for when and to what degree and we are not hot house flowers grown in controlled environments. The two issues could also have developed on their own completly independent of each other. As long as the goiters are benign? And you’re getting treatment for the thyroid? That’s an easy fix! The CIDP is another kettle of fish as all here can tell you. Just don’t give up! Keep asking questions… and researching on your own. We all are here to help! Again? DON’T GIVE UP!