Thyroid and Scleroderma

Are issues with the thyroid common among scleroderma patients? I know i've read on these threads about Hasimotos disease but also wonder what else happens, if anything. I've never been check to my knowledge to see if its working right. Should this be added to the annual tests list for scleroderma?

Report post

24 replies. Join the discussion

I dont know if there are common but I have both and they were diagnosed this year. After the Slero I noticed my thyroid seemed puffy. My levels were normal but found out I had a multi nodular goiter. Had biopsy and was diagnoed with Hashis. Im not sure if this is standard Sclero procedure or just a symptom based thing. Good Luck!

Report post

My rheumy told me it was fairly common. I was diagnosed with hypothyroidism about 9 months after the scleroderma diagnosis. From what I understand thyroid issues are somewhat common with or without scleroderma.

Report post

My rheumy has never said it is common, but in the last 3 or 4 years I have been dealing with enlarged thyroid with multi nodular goiter? They keep biopsying the nodules because my mother had thyroid cancer and some nodules are follicular. I am sick of dealing with it all. I know at one time the thyroid wasn't working because I blew up and can't lose the weight. Had all sorts of symtoms from it. I have scleroderma and sarcoidosis, among other stuff that goes along with those. During the time this with the thyroid started up I had no insurance and couldn't work so never had it checked. Guess it went on for 3 years before seeing a doctor. When I was able to they thought it was cancer since I had the family history and symtoms of it. It kinda makes me mad that no doctor so far has said thyroid issues are common among us uncommon folks! Maybe I just need better doctors who open up and spend more than 5 minutes with me.

Report post

Hypo is common in women of middle age. Scleroderma or not.

Report post

8 months after being diagnosed with sy sc I was diagnosed with thyroid cancer.

Report post

Had a total thyroidectomy 11/2012 for multiple nodules.Had been having fine needle aspiration biopsies every 5-6 months for several years,the last of which was equivocal whether it was malignant or not(couldn't rule out follicular cyst).I was diagnosed with limited scleroderma 4 years ago.I must say the surgery was less uncomfortable than the fine needle biopsy!

Report post

Hi Babs - Did all this show up with the thyroid routine test or was there symptoms? I don't know much about this. Read one of DaisyDo's posts where she talked about a TSH, t3, t? I'll have to find her post. I think I had TSH long long time ago before scleroderma but don't know about the other t tests they do. Hope you feel better since surgery.

Report post

I had thryoid cancer and Hashimotos diagnosed at the same time when I was 29. Thyroid stuff is incredibly common, but my rheumy thinks that people who have one autoimmune disease are more likely to develop another. In my case, may the Hashimotos was the gateway disease!

Babs 23, are you going to have RAI to ablate the remaining thyroid tissue or did the pathology show the nodules to be benign?

Report post

Prog3-I am followed by an endocrinologist for osteoporosis and during an office visit ,during the exam he palpated my thyroid and found it to be enlarged and lumpy(the nodules).Labs were always normal.Thyroid ultrasounds were done to define the problem and then the fine needle biopsies.I feel fine,the recovery was really nothing,mostly a stiff neck and shoulders from having my neck hyperextended so they could reach the thyroid.

Report post

I have both.

Report post

the blood test to screen for thyroid disease or cancer is the thyroglobulin antibody

Report post

Hi EandMsMom-no radiation necessary,no malignancy found.I had a total thyroidectomy.

Report post

I have hashimotos and MCTD. The Hashimotos was diagnosed about 7 years before the MCTD. There is a lot of overlap with autoimmune thyroid disease(such as hashimotos and graves disease) and systemic autoimmune diseases (scleroderma, lupus, mctd, sjogrens, etc) In some studies I have read the highest prevalence of overlap is with hashimotos and MCTD and so I am not surprised that I have both.

Report post

Babs, glad it was benign and saved you one more medical procedure!

Report post

I was at my primary care doc's office today for a cbc and metabolic panel required prior my cataract surgery in February. I asked about the thyroid (TSH and the rest of the t's). The answer I got was that bloodwork done in late October 2012, reflected a normal TSH. Was there enough done here since it was normal or should the rest of the t's be done to rule out other stuff? You guys seem to know a whole lot about this.

Report post

I was going to add, I didn't realize the TSH had been checked in October.

Report post

prog3 - every doctor seems to have a different interpretation of what is normal for TSH - and when/if they advise treatment. Some will treat based on symptoms if your TSH is as low as 2, while others won't do anything unless your TSH is above 5 or 6; I even had one doctor tell me he wouldn't prescribe meds until someone has a TSH over 10. So you need to get your test results and see what your doctor is calling "normal".

With hashimoto's, your TSH levels may fluctuate, so on any given day you might test hypo, hyper or simply normal. So getting T3 and T4 levels tested is a good idea if you suspect you might have hashimoto's. There are 2 thyroid antibodies that can be tested for, although my experience is that many MD's don't run them.

If you do have hashimoto's, treating it can make a world of difference - at least it did for me.

Report post

Heres: a letter I just posted for a friend who inquired about it:

Ever since before 2002 my docs had been running tests of T3, T4, and TSH on me. I had a long list of complaints that were relevent to hypothyroidism, including loss of hair on my body, weight gain, fatigue, feeling cold, sleepiness, dry flaking skin that used to be oily etc. But nobody treated me. Finally in 2007, I had a PET/CT scan that showed a "hypermetabolic" thyroid, described as probably thyroiditis. My sleeping had become so poor that my doc also finally sent me for a sleep study. I went to the sleep study first, and they found I had SEVERE sleep apnea. Then I went to the new endocrinologist, and he found really high TSH, meaning hypothyroidism. He called me to start me on levothyroxin. At the followup, I told him that I had just also been diagnosed with sleep apnea. I said, "I've heard that hypothyroidism can cause sleep apnea. He said, "Correction... UNTREATED hypothyroidism can cause sleep apnea." I could tell he was really pissed off that my prior doctors hadn't treated me for hypothyroidism. So I went back and looked at all my prior TSH results, and found out that he was right. They were all over the amount recommended as the new upper limit of normal published by the American Association of Clinical Endocrinology in 2002. They had lowered the upper limit to 3.0 instead of 5.0. All of my results had been above 3.0 from 2002 onward. No one had done anything about it. Now I am stuck with wearing a CPAP mask every night for the rest of my life.

You need a TSH, T3, and T4. If your TSH is above 3.0 with symptoms the doc should agree to treat you. Unfortunately the labs have never changed the "normal ranges" on the lab forms and they still say that up to 5.0 is normal. But stand up for yourself! You may also need a sleep study.

Here's about the revision: http://thyroid.about.com/cs/testsforthyroid/a/newrange.htm

Report post

I was diagnosed with hypothyrodism at age 16 (now I am 33). I was treated consistently until age 24 and around the same time diagnosed with morphea/schleroderma. Between 24 and 32 I had several doctor's tell me that I didn't have hypothyroidism because my TSH was normal and recommended that I not use the medication. Nevertheless, I am back with my original doctors and of course back on medication with the doctor's being frustrated that I was told not to take it. I am recently diagnosed with Hashimoto's by the endocrinologist and I am working to learn more about it. I am grateful that I have an excellent team of doctor's (primary, endo, rheum) that listen and work together while being willing to order tests and monitor things when I request them. I read all of the above posts and learned a lot! Thank you

Report post

Srhbear, between late 2002 and 2007 (until it spiked up in 2007) my TSH was running just between 3.0 and 5.0. And yet failure to treat at that "subclinical" level resulted in severe obstructive sleep apnea for me. So I think it's very important to treat if the TSH is running above 3.0., even if it's below the old threshold of 5.0.

When my autoimmune disease flared up really bad in late 2002 is also when I gained 20 pounds in the space of about 3 months. So that's when I think it really struck my thyroid. When I was in college, I weighed 97 pounds no matter how much I ate. Now I eat almost nothing, and weigh about 170 pounds, even taking levothyroxin, with TSH values now "normalized." It's the pits.

Report post

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Things you can do

Support the Scleroderma Foundation

Help the Scleroderma Foundation reach its goals and support people like yourself by making a donation today.

Donate to the Scleroderma Foundation

Discussion topics

From the Scleroderma Foundation

Community leaders