AlyssaWinegardenAlyssaWinegarden New Life Outlook
Paula asks: 'How many of us fibromites also have thyroid issues and have those been tested for low iodine?'


  • Yes, I had been tested in the past as a routine for thyroid issues but almost at the same time I was diagnosed with fibro I was also diagnosed with hypothyroidism.
  • I was diagnosed with Hypothyroidism many years before my Fibromyalgia diagnosis.
    I remember asking my Endocrinologist about using Iodized Salt......due to my living in Michigan......part of the "The Goiter Belt". He told me using Iodized Salt was not recommended due to the fact that iodine is fed to all it's in the milk and dairy products, as well as the meat we consume. I don't think my doctor has ever tested my iodine level.
  • @AlyssaWinegarden i was diagnosed with thyroid problems way before i was diagnosed with fibro. been taking synthroid for many many years
  • I found out I have Multi nodule goiter, after I found out about fibromyalsia. Iodine levels were fine. Also have Renaud's disease as well. Amount a multitude of other Heath issues...
  • dejaybdejayb Member
    @AlyssaWinegarden I've had thyroid problems for the last 25 yrs. I have been on synthoid most of the time. I saw a Integrated health Dr who put me on alot of supplements and I was getting sicker and sicker. One was kelp, which is iodine
    I looked at the other supplements and 5 of them had iodine in them. I was so sick, it took me a couple of months to get her to look at them and see that I was right. She told me to stop taking them, but I already had. My blood test showed that I was more than 15x what the level should be for my age. She thought that the lab made a mistake and sent me to another one and the results were the same. It took 4 months to get her to believe me. By that time I had gone to a different Dr who had gotten me at the right level.
    But I now have Hashimotos disease and I am much sicker overall.
  • I discovered I had hypothyroidism in 1999 after my 3rd child was born, way before fibro (2007).
  • I have had thyroid issues for years! Keep getting it tested for T3 and T4 levels
  • I had hyper issues when I was young but for the past 20 years I am hypo. I am also a type 1 diabetic.
  • @Marilyn3 That's the same that happened to me in Iowa,not using iodine salt.I was 11 when I was diagnosed and had a goiter,many years before fibro.
  • dstdst Member
    I have had hypo for 47 years. I have a t3/t4 conversion issue (genetic defect).The females in my family have it going back 5 generations. one hyper/one hypo. my mom was a twin, she was hypo, her sister hyper. I find it interesting that up until 3 years ago had synthroid daily, and now have nothing despite constant weight gain. They say my levels are fine, but I know the dr. here are not very knowledgeable regarding this- even the one endocrinologist in the entire area. I have several other autoimmune diseases concurrent with the fibro which was not dx till 3 years ago.
  • My thyriod test just came out high. But I am on humira for psoriatic arthritis. So is it my med or what causing this
  • I've been told I'm probably dealing with Fibromyalgia as one of my many issues. I've had hypothyroid since 1996. However, recently I've developed a mass on my thyroid. I'm actually slightly hyperthyroid at the moment. I've had difficulty with weight for about 15 years. Fatigue has plagued me since 2013
  • I was hyperthyroid for many years. After they nuked my thyroid gland I needed Levothyroxine. Then the fibromyalgia started, it caused me a great deal of debilitating pain for 2 1/2 years. I switched to Armour thyroid meds and 2 months later, the fibro pain was completely gone. I have no idea if it was the synthetic thyroid med doing this to me or just the absence of T-3's. I do know that statin drugs also gave me a similar condition...I didn't stay on them long enough to figure it out or complain of fibromyalgia. So, in my opinion Fibromyalgia may be a condition that is caused by certain meds we take that our body doesn't do well with.
  • I am on synthroid, and I take a thyroid supplement for iodine. I had asked my Dr about iodine supplement in the past and he was not a fan of them, but recently I asked him again, ,I was having more problems with slin dryness, rash and swelling in legs. I use sea salt as its been so popular recent years, so he sounded like it would be something to try. It does seem to have helped with the swelling and rashy itching on my legs ,for that I am thankful. I do wonder about a natural thyroid, but he is not on board with theat . Any one else have any experience with natural thyroid?
  • @AlyssaWinegarden hypothyroid regulated by Armour thyroid long after fibro diagnosis.
  • @AlyssaWinegarden
    I have recently been diagnosed with Hypoparathyroidism. I haven't seen the doctor yet, so I am very worried about this. I also have low iron, high calcium, and extreme weight gain. I've had 2 blood tests and a 24 hr urine test. I see the Endocrinologist on the 15th. My pharmacist is the one who actually told me something was seriously wrong with me. I seen an Obgyn who told me my Fibromyalgia wasn't under control either because my abdominal wall was seriously inflamed! I've been looking for answers for 3 yrs and I've finally found out WHAT is causing all of my problems, well some of them anyway.
    I have Lumbar Scoliosis, where my lumbar spine is curved like a C right above my sacrum. This has caused me pain for over 30 yrs! I've had Fibromyalgia in my lower back since 1993, when I slipped on ice and broke a spinal fusion I had in 1992.
    So ANY help you can provide on this topic would be greatly appreciated!
  • My sister, who is 10 mths older than me was just diagnosed with a goiter on her thyroid. I wonder if she may have hypo/Hypaparthroidism issues as well? She has always had weight gain issues. My weight gain was extreme over 60 lbs in 6 mths. My doctor has tested for thyroid problems before, but NO one thought this was a concern since they put me in menopause a yr ago. sigh
  • @jo_baird I had gained 70 pounds in 7 months and the Dr I was seeing at the time was telling me it was probably stress, yeah sorry im not a big eater to begin with and 10 pounds a month is not normal this is what i told him, he then called me back for blood work up and at 40 i went from 120 pounds to 190. Been dealing with it for over 10 years now and have been on medication since finally the last t3 t4 test showed my thyroid had did a flop and i started losing, lost over 40 pounds slowly and now i feel as if i am gaining it back. Your weight gain could be a number of reason but Thyroid is the leading cause I know people look at me and think i could eat the side of a cow when i only eat one time a day usually a lower in fat hamburger but i am also a low sugar diabetic and I am suppose to eat 6 small meals a day and 3 snacks guess I'll die a diabetic because i can not eat like they want me too. And yes I would think your sister has Thyroid problems as well. Best wishes
  • Issues with fibro way before thyroid issues.
  • @KLester78 I've had hypothyroidism since I was 11 years old.I had a goiter.I weighed 200 pounds and was 5'2.I've taken Synthroid ever since.I still watch what I eat.I tend to gain all my weight up front.With the fibro pain, that is the last thing I want pulling on my neck and back.
  • I am currently being tested for Hashimoto Disease. I have had Fibromyalgia for 13 years, and am 47 years old.
  • @AlyssaWinegarden I have had Hypothyroidism for almost 30 years and honestly I think I had fibro around the same time, way before it became an actual diagnosis that is taken serious. My thyroid levels go up and down every three months, changing my medication all of the time. I also have diabetes..I have more then I admitting here but let me tell you, it is no joke. We need to love ourselves and rest, eat right and listen to our bodies each and every day!
  • I had a low thyroid years ago and then Dr took me off Synthroid and my blood tests have been ok BUT I have nodules on it. Had a recent biopsy of the larger one but haven't heard results yet. Often I'm forgotten. Wah! I was supposed to be referred to a pain clinic but haven't heard from them.
  • @AlyssaWinegarden I am forever forgetting to take my levothyroxine first thing in the morning. The best I do is 3-5 times per week. I have done this for years but this past summer I had to change drugstores from a small pharmacy to RiteAid. I have become more and more tired, depress, increase pain and increased problems with blood pressure and chest pain. I really believe the RiteAid are inert. I have changed to OPtUM RX and will get rechecked in 6 weeks. I am now journaling on my Dr.'s web site daily levo and B/P along with pain level, stressors and meds taken.
  • I had Graves' Disease (hyperthyroidism) and took radioactive iodine. I now have hypothyroidism. I never got better and 17 years ago I was diagnosed with fibro. I stopped taking my meds one year and gained over 80 pounds, also suffered from severe depression. My doctor told me that having low T3 and T4 levels can cause depression and suicidal tendencies. I'm back on levothyroxine but still haven't lost that weight.
  • DandylinDandylin Member
    edited July 2016
    Paula asks: 'How many of us fibromites also have thyroid issues and have those been tested for low iodine?'
    I have had hypothyroidism for 19 years. I had been doing well with the same prescription for levothyroxine for that same amount of time. While being diagnosed with Fibro, I also had blood work done to rule out other issues. At that time my tsh was 18. I was placed on a higher dose of levo, but I have always wondered if the change in the thyroid was part of what caused the fibro
  • @AlyssaWinegarden I just found out I have an enlarged throid with multiple, I'm in the process of getting more tests done. Sooooo, tired of going to Dr. Also have fibro, and lupus, chronic fatigue. But, I keep moving...
  • @AlyssaWinegarden

    I found out I had hypothyroidism approximately 25 years ago. I didn't get diagnosed with fibromyalgia until around 2006 - 2007.
  • @AlyssaWinegarden I've been diagnosed hypothyroid since 2010 - in 2012 had my thyroid removed due to large goiter. They have never been able to get my medications correct to get my Thyroid hormones to a normal level. I was on synthroid for years and synthroid/cytomel combination - i am now on 240 mg of Armour thyroid and still my levels are too low. I've had so many tests done and been to Mayo Clinic with diagnosis of chronic sensitization syndrome - combining Chronic Fatigue and Fibromyalgia, Hypothyroidism as well as Diabetes Insipidus(water diabetes due to small tumors on my pituitary gland.) I'm just trying to live my life one day at a time.
  • Yes, I was diagnosed with hypothyroidism years ago. Wow, after reading your responses, this all is making so much sense!
  • @AlyssaWinegarden

    I have a multi nodular growth on my thyroid and am borderline hypothyroid but could not take levothyroxine or armour due to causing me to have tachycardia symptoms so doctors don't want to treat me for it since I am so sensitive. I have not been tested for iodine but believe it is likely okay since it is in so much of the food we eat.
  • You are telling my story, @Mamacatt . I was diagnosed with papillary cancer of the thyroid in September 2006. I went in for a total thyroidectomy that November and my body has never been the same. My hospital stay was extended two days because during surgery, they had to relocate one of my parathyroids. My body completely freaked out because of it. So, I don't know if the thyroid removal, the parathyroid problem, or hypothyroidism caused my fibro, but one of them definitely did. They told me that I'd just have to take a pill the rest of my life to replace the gland and life would be golden. It's been anything but. They can't get my thyroid levels to regulate either, so I feel like crud for awhile hoping it will go away and then go in for a test just to find out it's off again and then it's at least four weeks before I feel better. It's been over 10 years now and I'm considering disability because I'm no longer a reliable, efficient full time employee. It's only been in the past couple of years that my doctor has finally started using the word "fibromyalgia" to describe my condition. I don't know when he officially diagnosed me, but it took too long.
  • @AlyssaWinegarden Hi Fibro Sister, Yup I was diagnosed with Hypo and Fibro at the same time I was being treated for Hep C , Hep C also triggers Hypothyroidism now I wish my Doc had waited until the really harsh Hep C treatment was over and I was in remission for a few months (Cured was not a word we dared use for the HepC treatment back in 2005 but I am cured!!) If my tests improved over time then perhaps I wouldn't need to be on Levothyroxine for the rest of my life! Who knows but routine tests by Liver Specialists for Thyroid should be monitored closely for those who have the dreaded disease of Hep C.
  • Diagnosed with Hashimoto's Thyroiditis (autoimmune thyroid issues) 3 years after being diagnosed with Fibromyalgia. These conditions are pretty commonly comorbid, but not always.
  • I am interested n statistics. I wonder what percentage of Fibromyalgia sufferers have Thyroid Problems?? I also have Hypothyroidism and take synthroid since they removed my thyroid.... I had also had a parathyroid removed prior to both diagnosis.

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