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Adrienne Dellwo

Fibromyalgia & Hashimoto's Thyroiditis

By December 21, 2009

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Pain in the neck, hips, knees, hands and feet. Getting cold a lot. Being tired all day. Brain fog. Problems swallowing. These symptoms are just par for the course when you have fibromyalgia. But what does it mean when those symptoms get worse and worse while other fibromyalgia symptoms are well controlled?

My rheumatologist wanted an answer to that question a few weeks ago, because it just didn't make sense. She ordered blood tests for several forms of arthritis and also Hashimoto's thyroiditis. I tested positive for anti-thyroid antibodies, so Hashimoto's was the lucky winner. Thyroid disease tends to be more common in fibromites, so this isn't a big surprise.

In Hashimoto's, the immune system has malfunctioned and decided a particular protein in the thyroid gland is a foreign invader. It then forms antibodies that begin to attack the gland and destroy it. Typically, people don't know this is going on until their thyroid is so damaged that it impacts thyroid-hormone levels, and typical treatment means taking thyroid hormone to normalize levels.

I have fibromyalgia, though, which means I'm never "typical." I've been treated for under-active thyroid for about 8 years now (with Hashimoto's ruled out a couple of times) and my levels have stayed in the normal range. The symptoms that have been bothering me aren't related to underactive thyroid, they're related to the autoimmune activity. My doctor, being a specialist in autoimmune diseases that cause pain, is taking a non-typical approach to my treatment -- she has me on a drug called Plaquenil (hydroxychloroquine), which is normally used to treat lupus and rheumatoid arthritis. She told me she's used Plaquenil in other patients with Hashimoto's with good results.

Plaquenil changes the way the immune system works but doesn't suppress it, like many autoimmune treatments do. I started on it about a week ago and so far I'm tolerating it well (surprise, surprise!) I think I'm feeling a little better, but the drug doesn't take full effect for up to 2 months, so it'll be awhile before I know for sure.

If you're diagnosed with fibromyalgia or chronic fatigue syndrome and you've never had your thyroid hormone tested, you should. The symptoms are so similar that when my fibro symptoms first started up, I had my doctor check my thyroid and was stunned when it was fine.

Another lesson here is to pay attention to your symptoms. The pain I've had for the past few months has been different from my fibro pain. I usually get burning, stabbing pains that move around. The Hashimoto's pain is deep in the joints and really achy. I've also been extra tired during the day, and brain fog symptoms that I haven't had in months were creeping back -- however, without that packed-in-cotton feeling in my head.

All of us should be familiar with the symptoms of thyroid disease. Don't get paranoid about them -- remember that most of these symptoms are normal in us -- but have them tucked away in your mind in case you start having new symptoms or a cluster of symptoms that's getting worse while your others are stable. Here's a great article by Mary Shomon, the About.com Guide to Thyroid Disease, that gives you the basics of several thyroid problems:

Do you have a thyroid problem? What symptoms does it cause? Is it well controlled? What medications have you taken for it? Leave your comments below!

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Comments
December 23, 2009 at 7:40 am
(1) Greybeh says:

Adrienne,
Glad you’re getting answers. I have an appointment today for troubles I’m having that I feel are neuro-muscular and don’t seem to be related to fibro (too predictable and clearly progressive over time). It’s a relief to get a diagnosis but still there’s that sense of having plenty on your plate to begin with. I am glad to hear your illnesses are being well-managed!

Heather

December 23, 2009 at 10:24 am
(2) jean says:

I have had antibodies to my thyroid gland for years and there hasnt been any doctors nor specialists that want to treat it…my normal lab tests for thyroid are within the normal range but I persistently have antibodies positive…which I think means auto-immune thyroiditis. What type of doctor would treat me since none so far have…I have plenty of symptoms for this disorder.

December 23, 2009 at 3:15 pm
(3) OzarksUSA says:

I was diagnosed with Fibro at 15 and Hashimotos at 23. My sister was also diagnosed at 23 with hypothyroid. Right now (I’m 28) I see and endocrinologist for my thyroid. My mom had to have hers removed, and by the time of the surgery the surgeon said it was three times it’s size on the right and twice it’s size on the left and was covered in nodules. My endo I see has already noticed swelling in my right side and two nodules on my thyroid and one on my parathyroid. I really recommend getting an endocrinologist if you have thyroid problems. Your GP may say that you doing need one, but that happened to my mom for years. I pushed her to finally get a referrel and the day she saw her endo for the first time he sent her straight over to a surgeon to schedule a thyroidectomy for the next week. Don’t take any little bit of your health for granted, we especially can’t afford to when we already have FMS and/or CFS.

December 23, 2009 at 8:12 pm
(4) Barb says:

I have had fibro for 6 years. About that same time, my daughter was diagnosed with Hashimotos. The only reason they discovered it was because 2 weeks before her wedding they found out she would never be able to have children. Imagine my shock when I got your announcement today! Now I am wondering if the 2 are related. My daughter has been seen by 2 endos, but has never received any treatment. I hope she takes this to her doctor. I will be most interested in following your progress. Thank you so much for your newsletter!! It is my sanity and contact with the outside world as I am mostly housebound. Merry Christmas to you and yours.
Thanks, Barb

December 23, 2009 at 8:30 pm
(5) Sierra says:

I’ve had CFIDS, FM, and Hashimoto’s for 23 years. Between the 3, it’s often hard to tell “which witch is which”, with all the overlapping symptoms.

I do know that it IS possible to have a “normal” TSH and still be hypo and have Hashimoto’s. Right now I’m having a bad relapse of fatigue and FM symptoms. My TSH is 2.24 which the average dr would say, looks just great! Not for me. My TSH needs to be around 1 for me to feel half way decent. Fortunately, my internal medicine doc is terrific and understands this so he upped my T4 meds.

Hopefully, when the increased Synthroid kicks in (another few weeks) it will send my tingly numb arms and feet, pain in my shoulders, ringing ears and extreme fatigue packing.

TSH measurment is not a surefire diagnositic tool. Hashimoto’s patients also need to have both their Free T3 and Free T4 checked every 8-12 weeks. Both of those ranges should be midrange or above. I had to add T3 (Cytomel) to the T4 (Synthroid). Check out Mary Shoman’s Thyroid site here at About.com for detailed info on Hashimoto’s.

December 26, 2009 at 4:47 am
(6) Julia Rachel says:

Before I was diagnosed with Endometriosos, genetic pabcreatitis, psoriatic arthritis with anklosing spondylitis and fibro, interstitial cystitis, HHV-6A, EBV,CMV,Micoplasma, CFIDS and XMRV (probably the unerlying culprit)…I was diagnosed with Hashimotos Thyroiditis. I was tested for about 15 years by various MD’s and always told I did not have a thyroid problem. BUT….I was gaining weight (I am 5’10″, weigh 145-160 lbs) and at one time ballooned to 230 lbs and had extreme swelling and lethargy. My neck grew 4″ in diameter and I began to choke even when not eating. The seat bealt straps in my car hurt my neck when I put them on and all of my turtle nexks felt like i was being strangled in them. My thyroid tests were within NORMAL RANGE! Turns out….I do not process T-3 ans sometimes he only way to diagnose Hashimotos is by neck ultrasound to measure goiter sizes and amounts of goiters. Also, a short fifth digit (pinky) is an easy physical marker/identifier of Hashimotos. I wish more MD’sknew ofd this simple physical examination of the hands. My doctor who teaches at Oxford and USC discovered the 5th short digit link through studying thousdands of patients. Auto immune deficiencies go hand in hand with CFS/CFIDS/ME/FIBRO/XMRV. Just my Story….Blessings…..Julia!….http://vlgonvalcyte.wordpress.com/

December 29, 2009 at 7:16 pm
(7) Anita Dengler says:

I found your article about Hashimoto’s very interesting. I’ve been diagnosed with FM and CFS, plus hypothyroidism. I’ve been tested a few times for Hashimoto’s, all negative results. Are people with FM/CFS more prone to autoimmune diseases? During the summer I had a rash that looked like pityriasis rosea, but wasn’t showing typical patterns. In fact, I had lesions on my head, which PR is not known to do. Since then, my hair has fallen out where the rash was and my fingernails are so brittle and soft, and I have ulcers on my tongue and inside my nose. This is in addition to the usual symptoms of FM/CFS. I was wondering if it could be Lupus? I also have symptoms of Sjorn (sp?) Disorder with chronic dry eyes and mouth. It’s really hard to tell what you are ailing from, because everything blends together after awhile.

Anita

September 27, 2010 at 3:58 am
(8) Vizeet says:

This is interesting because my Ayurveda doctor prescribed me medicine for rheumatoid arthritis for Hashimoto. It seems I need to take his treatment seriously.

October 29, 2010 at 5:13 pm
(9) Jo Moore says:

I have just been reading your artical on thyroid,well i have a unusall thyroid as my isnt stable at all first it goes overactive then all of a suddon it goes underactive.my doctor has said she hasnt seen anything like this before .i had my blood test done in july and it was dangarously over then my doctor said to have another one done and it went dangarously under so now i have been referred as my thyroid has done this again with my last 3 blood tests,(i have not had medication for this as it make my thyroid alot worse)so now just got to wait and see what the speicalist has to say.

November 27, 2010 at 12:52 am
(10) Leigh says:

Anita, I am hoping that by the time you read this you have already seen the doctor and you have gotten a better diagnosis…but I have had several autoimmune diseases and have been very sick with all of them…the ulcers in your mouth and on your tongue sounds exactly like my daughter right before she was diagnosed with Lupus…she was home on a college break and I read one of her perscriptions and it was for tonsilitis….I was livid since she hasn’t had tonsils since she was two years old. she really sufferend with the sores in her mouth. I am so sorry to hear that you are having so many problems getting a good diagnosis. I hope you find someone soon. I know that all this runs in families and most of my family has one form or another of an autoimmune disorder. I have 3 of them at least and I just need to learn to pace myself, which has been hard. It was my older daughter who took care of me until she went to college. I sure understand why she never came home. She was suffering too…Jo Moore, what you are describing is exactly what I had in 2004 and my doctor said it was a “rare” thyroid disease, but after following Mary Shamon on the throid website here I don’t think it is so rare…I am now in the hashimoto’s stage and have been for about 2 years…I hope you can find some relief soon….please get a good endo; you really need one that will treat you. Good Luck and I hope by the time you read this you are on the road to health. Hugs to all!!! I wish I had some magic words to tell all of you and me…I just don’t…been in a flare for almost two years now. I have never been so bad.

November 27, 2010 at 9:27 am
(11) Jo Moore says:

I have seen a specialist for my thyroid but because my thyroid blood readings are so over boarder line and the so under boarder line they said i got to have another blood test in 2 mths then again in 4 mths but then when they the results back i will get some help but till then ,they are just going to watch and wait.

September 17, 2011 at 11:17 pm
(12) Wendy says:

I have been diagnosed with fibro too and am wondering if I have hashimoto’s. I can’t tolerate many foods, including saltwater fish and seafood, iodized salt, nuts, broccoli. If I eat around 1 granule of iodized salt per day, I feel like I’m having a thyroid storm. If I have no iodized salt, I get very lethargic and cold. I had my thyroid tested a few years ago and my TSH level was .52. My doc said that was in the normal range. Do you think I should see an endocronologist? I really appreciate your article!

August 8, 2012 at 9:59 pm
(13) Noel says:

Hi! Thanks for your informative postings! I was diagnosed with Lupus (SLE) the summer of 2010. Six months later, I was diagnosed with Fibromyalgia and Obstructive Sleep Apnea. I was still reeling from the Lupus diagnosis! Even so, with the myriad of medicines that were supposed to ease my suffering, I still had issues with deep pain in my hip joints (not usually associated with Lupus,) feeling cold constantly, and difficulty swallowing. My rheumy decided that I probably needed to be tested for thyroid antibodies, and I am ever so thankful that he did. As it turns out, I was more recently diagnosed with Hashimoto’s disease and started hormone replacement therapy. One not of caution to anyone who is tested… With a abnormal TPO and thyroglobulin antibodies, my TSH was high average. Fortunately, my endocrinologist is very knowledgable. He told me that the pituitary gland still produces TSH to try and stimulate my damaged thyroid to produce hormones. Therefore, my TSH level could still be normal. What matters most in the diagnosis from his point of view is the antithyroid antibody results and the symptoms. From posts I’ve read on other sites, some people who have abnormal thyroid antibodies and a normal TSH level, their doctors prefer the “wait and see” method.

December 12, 2012 at 3:48 pm
(14) www.svd.se says:

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