Hashimoto’s Thyroiditis – It’s a Genetics Thing

Hashimoto's Thyroiditis - It's a Genetics Thing by Holtorf Medical GroupWhen Hypothyroid Mom launched on October 1st, 2012, I hoped my blog would reach a few readers outside of my family and friends, but never did I imagine the number of people that it would reach in such a short time. I was blown away when thyroid expert Dr. Kent Holtorf, medical director of the non-profit National Academy of Hypothyroidism and medical director of the Holtorf Medical Group, included @HypothyroidMom in his recommended list of people to follow on Twitter on a Friday in early November (#FF FollowFriday).

Dr. Kent Holtorf @HoltorfMed

 #FF @HypothyroidMom @BHthyroid @crzythyroidlady @ThyroidMary @ThyroidChange @OutsmartDisease #hypothyroid #thyroid #hashimotos disease

When the Holtorf Medical Group contacted me recently about including this guest blog post at Hypothyroid Mom, I was so honored. It’s pretty obvious by how I responded to his team.

“Dr. Holtorf has been a great supporter of Hypothyroid Mom since I launched in October 2012. He shared my blog with his followers on Twitter in the very early days when no one but my family and friends had any idea I existed. Absolutely yes I would gladly include this guest blog post about Hashimoto’s disease.

Dr. Holtorf ROCKS! You let him know that.”

What is Hashimoto’s thyroiditis or Hashimoto’s disease? It is a genetically inherited disorder of the immune system in which there is chronic inflammation of the thyroid gland. It’s as though the body’s immune system is confused and turns against the thyroid gland, making antibodies that interfere with the thyroid hormones’ ability to function.

How common is it? It might be more common than you think. According to current published data, there are approximately 14 million Americans who have Hashimoto’s and women are seven times as likely to have it as men. The number one symptom of hypothyroidism, or sluggish thyroid functioning, is fatigue. This stands to reason, since the thyroid hormones help our cells absorb and utilize energy from sources such as food and other hormones.

People who have Hashimoto’s can find themselves feeling like they’ve been short-changed, but so often, they don’t know why. They think, “Why am I so tired all the time? Even if I sleep all night long, I still feel like I could sleep all day, too.” They push themselves just to make it through the day. Their routine might include caffeine in the morning in order to make it to lunch. Instead of eating, they drink a shake and take a nap until lunch is over. The short nap gives them just enough energy to get through the afternoon. They can’t wait to get home so they can crawl into bed as soon as possible. If it’s been a rough day, they may not even have enough energy to put on pajamas before going to bed. Does this sound at all familiar to you or is there someone you know that this describes? You don’t have to feel this way, and you don’t have to live this way.

The thyroid antibodies the immune system makes with Hashimoto’s are proteins that attach themselves to thyroid hormone, decreasing the amount of hormone that is available in the bloodstream. This is the primary reason it is so important to find a physician who will work with you to determine the appropriate treatment for you. The first course of treatment is determining the best thyroid replacement for you.

Once you find a Hashimoto’s disease doctor they will begin by treating you with thyroid hormone replacement therapy, but there are other medical and nutritional additions that can help.

Individuals with Hashimoto’s disease often have low levels of DHEA and testosterone. When these are supplemented, it can decrease levels of antibodies and decrease the ongoing destruction of the thyroid gland. It has also been shown that selenium deficiency can play a role in Hashimoto’s disease. Taking Selenium supplementation can often reduce antibody levels, though selenium is not a replacement for thyroid medication.

Low Dose Naltrexone has also shown to be very effective for autoimmune diseases such as Hashimoto’s disease and it can lower anti-thyroid antibodies.

Identifying and treating any chronic viral or bacterial infection that may be the underlying cause of the immune dysfunction can reverse the disease.

It might seem strange, but immune boosters can help Hashimoto’s disease. But they must boost the TH1 portion of the immune system and not the TH2 immunity. Treating with TH1 immune boosters can cause a reduction of the hyperactive TH2 immune response that is present in Hashimoto’s disease and help reverse the underlying cause. This may be especially helpful when a chronic infection is present, which is often the case (especially in chronic fatigue syndrome and fibromyalgia). The immune-modulatory properties of gamma globulin, either given intramuscularly or intravenously, can be very beneficial.

As you now know, there are a variety of treatments for Hashimoto’s and finding a hashimoto’s doctor that can assess you correctly and understand the treatment options can make all the difference in your quality of life.

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About Dana Trentini

Who knew that little butterfly-shaped thyroid gland at the base of my neck could affect my life so completely? I founded Hypothyroid Mom in memory of the unborn baby I lost to hypothyroidism. Winner of two 2014 WEGO Health Activist Awards: Health Activist Hero & Best In Show Twitter. *Hypothyroid Mom includes Affiliate links. Connect with me on Google+

Comments

  1. Rebecca B. says:

    Thank you for bringing attention to the hereditary component of Hashimoto’s. Few doctors are aware of this which leads to a delay in other family members being tested and treated. I’m a 45 year old mother of six children and was diagnosed with Hashimoto’s 2 years ago. After I understood the disease and symptoms, I immediately suspected that my 19 year old daughter and sure enough her antibodies were even higher than mine with a TSH of 10. After my 13 year old son also tested positive for Hashimoto’s I asked my husband to be tested and he has Hashimoto’s with a TSH also of 10.
    A year ago my 23 year old daughter received her diagnosis of Hashimoto’s. My 11 year old daughter shows signs of the autoimmune disease. My endocrinologist says that our all of our children will eventually have the disease. Only after my diagnosis did I find out that my father has been treated for hypothyroidism, as well as his sister, my father’s aunt, my grandmother suffered from hypothyroidism along with basically her whole side of the family. Some family members even suffered from Bipolar disorder which they believe may be linked to thyroid disease.
    I would just encourage anyone with Hashimoto’s to be open with their extended family. You may just be the key to unlock the cause of a whole lot of suffering

    • Dana Trentini says:

      Thank you for sharing your family’s story Rebecca. The hereditary component of Hashimoto’s in your family is such a powerful reminder that we need to watch our children carefully and share our diagnosis with family members in case they may suffer the same. I am struck by the fact that some of your family members suffered from Bipolar disorder. There is a link between hypothyroidism (in particular Hashimoto’s) and mental health issues such as bipolar and depression. You must read my post:
      http://hypothyroidmom.com/mental-disorder-or-undiagnosed-hypothyroidism/

    • Has anyone done much work linking HTLV-1 and the emergence of Hashimoto disease? I have it too, lost three pregnancies and can’t lose this darn 6 kgs, which Im not sure if its just flab, or odema….no one in my family has Hashimotos, ANYWHERE, we do have some coeliac disease on both sides and gut issues, thats all. I’m wondering if this all viral, and passed through maternal tissue, breastmilk, bloods etc.

  2. Great article. Thanks for sharing.
    Being adopted my parents did not know about my issues until medical records of my birth parents were released when I became sick after I was a few years old. I was diagnosed with Hashimoto’s at age 6 and found thyroid issues in my birth family history. Back in the 70s they did not have as much medical information they have now, but there were thyroid conditions that ran in the family and because they had it and I have it, we had our daughter tested after she was born and she is also monitored for signs in case she develops any thyroid issues as she gets older. She is 6 right now with no issues and I am glad we have a Pediatrician that knew what to do since I was diagnosed so young.

    • Dana Trentini says:

      Thanks for sharing your story Lisa. It’s so important to know our family histories to understand what diseases we have the potential to inherit. I can imagine the challenges of finding out family medical history when you are adopted. Thankfully thyroid conditions were included in your family’s medical history. So often people are undiagnosed and suffer their entire life not knowing the reason. I am happy you are watching your daughter. I too watch my sons very carefully.

    • Hi, my daughter is 10 years old and was diagnosed with Hashimoto’s Disease. She had an ultrasound done last week and now they found a nodule. Did you ever have a nodule at such a young age? Is it dangerous? Can it be cancer at such a young age? I am very nervous about the whole thing. Never even heard about this thyroid disease…this was the first time. Please respond at your earliest convenience. It would be much appreciated.

  3. You are so right about this! Good to get the word out.
    My paternal grandmother had a goiter. My father was undiagnosed but suffered for years from terrible fatigue and other symptoms which I now know were classic signs of hypothyroid/Hashimoto’s (he died at 60 of a heart attack) – I don’t think his doctors even bothered to test for thyroid problems. I found out I’m hypothyroid and I have Hashimoto’s; wish I’d known sooner. At least nowadays there is growing awareness, even it it’s gradual. Forums like this are great for increasing that awareness, and for helping us feel like we’re not alone in this. Thank you very much.

  4. Dana Trentini says:

    Thank you for commenting Kay. I appreciate it very much because it shows the power of genetics. I was particularly struck by the death of your father from a heart attack at age 60. I uncovered 300 recent articles linking hypothyroidism to heart disease. The threat is real yet few people are aware of it.

    http://hypothyroidmom.com/is-your-thyroid-killing-you-heart-disease/

  5. I believe I might have Hashimoto’s but when I had the blood test done to check for the antibioties, it came back as normal. Is it possible that you can have Hashimoto’s without a positive test for the antibioties? My mother had severe Hashimoto’s confirmed when she had her thyroid removed a year ago. The surgeon said he had a hard time getting it out because it had so much scar tissue around it from the body attacking it. But her levels were never elevated. If that happens to me, how can I get an accurate diagnosis and treatment if it doesn’t show up on the blood test? Is there another way to test for it or is there another condition that might be covering up the test results and making it look normal?

    • Dana Trentini says:

      Great question. Welcome to Hypothyroid Mom. There are a percentage of Hashimoto’s sufferers who show up negative for antibodies yet they have Hashimoto’s. Given your family history, it is very possible for you to have Hashimoto’s yet have negative antibody levels on blood tests. Hashimoto’s disease is typically diagnosed by one or more of the following:

      -Enlargement of the thyroid at the base of the neck (called a goiter)
      -High levels of antibodies
      -Fine needle aspiration of the thyroid (known as biopsy)
      -Ultrasound

      • Yes, please get diagnosed! My goiter was huge and first noticed by a doctor at the age of 18. It then took TWENTY YEARS to get a correct diagnosis when I thought I was having a heart attack (I could not breathe the goiter was so large). Sadly, I have had years of goiter growth and weight issues due to this and am only now finally being treated properly with 1.25 of synthroid. You have to push! So many doctors just done know or dont care!

  6. Jennifer Carroll says:

    Hi Dana,

    My story is I didn’t know I was Hypo until a physician I worked for (An ob/gyn), just LOOKED at me and said “Why are you so pale? You’ve got a thyroid problem, go to the lab and get tested now.” And he was right. I had my son 2 years earlier, and since he was born, I struggled with energy, feeling good, coldness, and body aches. After this diagnosis, and not knowing I was pregnant, I had a miscarriage, I’m guessing because my thyroid medication should have been adjusted, had I known. A couple years later, I was pregnant again! This time I moved quickly to get my physician to adjust my medication and found out I was having twins. During my second ultrasound, I was heartbroken to find out that one of the babies didn’t have a heartbeat. I went onto have a beautiful baby girl and discovered after a month after her birth she was born with a CHD (congenital heart defect). She had surgery to fix this at age 1. About 6 months after her surgery, I was pregnant again. Trying to nurse her and keep one growing in my belly was wearing me down, even though I had my thyroid adjusted again. The fetus had no heart beat at the second ultrasound. I was to devastated to even think about trying again. I’ve lost three unborn children, I couldn’t bear to lose another.

    A few years after I was diagnosed with hypothyroidism, my sister, who has never had children, was also diagnosed. She is 5 years older than me. She has struggled with her weight, but has never had any other issues except dry skin. About 2 years ago, my dad’s doctor discovered a nodule on his thyroid and my dad and his doctor decided it would be best to remove it. Things kinda went backwards in my family. I am the youngest, it all started with me finding out and helping my sister and dad along the way. My sister had done a lot more research than I had done, but she’s so busy now, I’ve been doing more research myself. There is still so much to learn! We are just learning about the foods not to eat, the best supplements to take, etc… I thank you, Mary Shoman, and Gina “Thyroid sexy” Nolan, for giving me the insight and the webites to go to. Keep on living and giving! There is such a huge community out there that needs your help!

    • Hi, I couldn’t help but notice your post. I am having a fine biopsy done on a nodule on my thyroid to determine what it is as we’ll as follow up blood work yet again. I have never been tested for hashimotos because my thyroid levels are apparently fine. My second daughter also had a CHD and surgery at 11 months. Is there a link between the two? I am finding it hard to get answers online. Any insight you have would be helpful. Thank you. J

      • Dana Trentini says:

        Hi JP, I am very sorry to hear about you and your daughter. Thyroid hormone is needed for the baby’s proper growth and development so any abnormality in thyroid levels can negatively affect their development including resulting in birth defects. I found several articles on the connection between hypothyroidism and congenital heart defects. This recent article attached for example shows that there is a possibility that your daughter’s CHD is due to hypothyroidism, although of course it may have happened for other reasons besides abnormal thyroid levels. Has she been tested? Have you too been properly tested? While TSH is the thyroid test normally used to diagnose and treat hypothyroidism, it often times does not provide a full picture of the issue. One, what is considered “normal” is actually a very broad range and may not be normal for you. There are also additional tests that should be done including Free T4, Free T3, Reverse T3 and thyroid antibodies. Ask for a copy of your lab results and check if they have all been done, ask for them. The same for your daughter. Absolutely there is a genetic tendency in thyroid conditions and so many of my readers have family history of thyroid conditions. However because there is so little awareness about these conditions it is possible to have a family history and yet you don’t realize it because family members have never been diagnosed but they still suffer. Do you suffer symptoms? Does your daughter? Take a look at these posts here. Best of luck to you both and let me know how everything goes for you both.

        http://jcem.endojournals.org/content/96/7/E1115.full.pdf

        http://hypothyroidmom.com/300-hypothyroidism-symptoms-yes-really/

        http://hypothyroidmom.com/top-5-reasons-doctors-fail-to-diagnose-hypothyroidism/

    • My daughter was diagnosed recently she is 27 and had all the symptoms. I feel so bad I didn’t notice them! We are Looking for dietary advice is there any foods she should eat or not eat with this hashimoto disease? Thanks

      • Dana Trentini says:

        Hi Kath,

        Sorry to hear about your daughter. Food intolerances are a big deal with Hashimoto’s in particular gluten. I’ve had several readers go gluten-free and their thyroid antibodies have reduced to normal so well worth going gluten-free. Two great books to read about Hashimoto’s that address dietary changes and supplements:

        http://www.thyroidbook.com/

        http://www.thyroidlifestyle.com/

  7. Dana Trentini says:

    Hi Jennifer, Thank you so much for sharing your story. I am sorry about the losses of your 3 unborn babies and that your daughter was born with congenital heart defect. Thank goodness the physician you worked for noticed your physical symptoms and recommended you get thyroid testing, otherwise imagine how much worse your story may have been for you and your children. I wish we could clone that doctor so we would have more doctors like that looking out for thyroid conditions. Your story also speaks to the genetics component of thyroid conditions. When I was first diagnosed my doctor asked me if any family members had thyroid conditions and I replied No. Turned out shortly after my brother started struggling with extreme fatigue and other hypothyroidism symptoms and he was soon diagnosed and more recently my mother was found to have hypothyroidism. I encourage everyone reading this to share their diagnoses with their family members including extended family members so they get their thyroid tested too just in case.

    To be included in the same sentence with the greatest thyroid advocates Mary Shomon and Gena Lee Nolin is an honor to me. Thank you. I appreciate it very much. Welcome to Hypothyroid Mom.

    • Jennifer Carroll says:

      I was just looking at your facebook page and see where you launched your site during October and the reason why. I guess there are more of us out there struggling with this issue of pregnancy and thyroid than I realize. You are amazing for starting this site and for sharing your story with the world. I think it’s hard for us to share these stories sometimes, but it can help the next mom-to-be to be aware and understand what they have to do, and to push their doctor to understand. The doctor who “discovered” mine, was an awesome man and person to work for. He passed away from an aneurysm about 2 years after he self-diagnosed me. He was one of the best doctors, all his patients loved him, and wonderful to work for. I am so glad I discovered your website!

      • Dana Trentini says:

        I appreciate your comment very much Jennifer. I created Hypothyroid Mom to be sure the baby I miscarried to hypothyroidism did not die in vain. There is so much lack of awareness about thyroid conditions that I had to stand up. I love hearing stories of great doctors. There are gems out there. I found one too and she is a true gem. I wish there were more of them for all the Hypothyroid Mom readers to each find on in their city. I’m sorry you lost your great doctor. Great to hear from you Jennifer.

  8. Hi Dana,
    Came across your post on my hunt for more info on the TH1 & TH2 issue with Hashimotos, which I have. Could you check out the link below by Marina Gutner, which seems to imply that when Th1 is dominant, which is usually the case with hashimotos, it is the Th2 that needs treatment. Whereas you indicate that “they must boost the TH1 portion of the immune system and not the TH2 immunity” . So now I’m confused and wonder if you could clarify. Thanks! http://outsmartdisease.com/how-to-stop-autoimmune-attack-on-your-thyroid-and-recover-from-hashimotos-disease/

    • Dana Trentini says:

      Hi Jane, Thanks for commenting. Great question. I reached out to the Holtorf Medical Group about your question on their guest blog post here. I would love to share their response with you when they respond to me. In the meantime, my understanding is that testing should be done first to determine whether you have an imbalance and to determine whether you are TH1 or TH2 dominant. In my case, my doctor tested me to determine which one was dominant first. Then, provide immune boosters for the weaker portion. I do see the discrepancy between the Holtorf Medical Group and Marina Gutner’s description of the dominance particular to Hashimoto’s as you’ve described. My feeling is that they both would recommend testing first to ensure they know whether there is a TH1 or TH2 dominance before treating with immune boosters. I’ll let you know as soon as I hear back from Dr. Holtorf’s team. I love Marina’s site by the way! Great information.

  9. Hey Dana, just checking in with you, I had my thyroid levels checked yesterday so I’m anxiously awaiting the results. I recently found out that my biological mother has thyroid disease. I wish I had the opportunity to talk with and find out what other health issues I might need to be aware of. At any rate, I’ll keep you posted when I get my results.

    • Dana Trentini says:

      WOW Jason! Your comment shows just how important family history is to our own health. Do you have any other information on your biological mother’s health history such as autoimmune diseases? I ask because Hashimoto’s is one of the leading causes of hypothyroidism, which can be inherited (and confirmed with thyroid antibodies testing), and when you have one auto-immune disease you are more vulnerable to other auto-immune diseases such as Type 1 Diabetes, MS, Celiac Disease, Addison’s Disease, Dushing’s Disease, Sjogren’s Syndrome, Chronic Fatigue Syndrome, Fibromyalgia, Rheumatoid Arthritis, Lupus, psoriasis, etc. It would be helpful to have all the details of her health history and that of her family members. In mainstream medicine, TSH is often the one test that is relied on to diagnose hypothyroidism. Please be sure to also have Free T4, Free T3, and Thyroid Antibodies tested to give you a better picture of your thyroid condition. Keep in touch.

      http://hypothyroidmom.com/top-5-reasons-doctors-fail-to-diagnose-hypothyroidism/

  10. Is there any truth to Digesta Cure?

    • Dana Trentini says:

      Hi Marlene, I wish I was familiar with Digesta Cure to comment. Happy to have you on Hypothyroid Mom. Welcome.

  11. I meant to say, is there any truth to Digesta Cure to help or even cure Hashimoto’s? I was recently diagnosed with Hypothyroid and after being on Armour Tyroid for 2 weeks, my Natropath did another blood test and found that although the Armour Thyroid seemed to be working I also had antibodies working against my Thyroid. I have excess water retention in my arms, and around my upper waist and sometimes in my ankles. My joints are sore sometimes and my brain gets foggy a bit and my vision somtimes struggles. After reading up on Hypothryoid and Hashimoto’s it was pretty depressing to think that I might have to deal with this for the rest of my life and if that wasn’t bad enough, it is pretty tough trying to find the right Endocrinologist to help me understand it all and then reading a couple more articles I came across one that talked about Digesta Cure to address Hashimoto’s, can you help me understand these diseases a bit more and what steps I might need to take?

    • Dana Trentini says:

      Hi Marlene, So you’ve tested positive for thyroid antibodies for Hashimoto’s yet your Armour is not helping to relieve symptoms. First, have you had your Free T4 and Free T3 levels tested? It may be a matter of dosage. Also many people do great on Armour while others do not. We are all different in how our bodies react to the ingredients in the different medications. For example, speak with your doctor about trying Nature-throid which is another form of natural desiccated thyroid. First step however is to first make sure your Free T4 and Free T3 levels are optimal because it may just be a matter of dosage. For example, I feel terrible when my Free T3 is in the low half of the normal range, I feel better when it is in the top half of the normal range.

      I haven’t heard of Digesta Cure so I cannot comment on it.

      There are many potential underlying issues that could be worsening your Hashimoto’s and need to be tested for you including sex hormone levels, vitamin D3 levels, B12, selenium, zinc, magnesium.

      Also gluten intolerance has been linked to Hashimoto’s and many people do better on gluten free diets. Also food sensitivities in general are common in Hashimoto’s so it’s important to figure out what foods make you feel sick, by eliminating food groups and reintroducing them one at a time to see what feels best for you.

      Best of luck to you.

  12. Sherry says:

    I was dignosed with stage 2 adrenal fatigue and then tested for autoimmune disease. I just found out yesterday that I have thyroiditis hasimoto and that both the adrenal fatigue and hasimoto have to be treated. Also iodine defiency showed up. Seems like everything is off balance, virtually no GABA or taurine and excitatory NT are very excited. Pregnenolene level also extremely low. I manage to function but slowly. I’m tired but can’t sleep at night, do what I call the flip/flop. My doctor said my thyroid is both hypo and hyper, I understand none of this. Can anyone explain on a grade school level what all this means. The doctor has started me on several supplements Gaba, Kavinace, calm cp, coral legends and others. Thanks for any help.

    • Dana Trentini says:

      Hi Sherry,

      It is common for Hashimoto’s sufferer to swing up and down between hypothyroid and hyperthyroid symptoms with TSH fluctuating. Also adrenal and thyroid function and closely connected so absolutely adrenal fatigue must be addressed. Poor adrenals are a common reason why some people react poorly to thyroid medications so it’s important to address. There is a great book called Stop The Thyroid Madness by Janie Bowthorpe that covers adrenal fatigue, testing and treatment in depth.

      http://www.stopthethyroidmadness.com/adrenal-info/

      There are other potential underlying issues with Hashimoto’s that should also be tested including Free T4, Free T3, Reverse T3, full iron panel (ferritin, serum iron, TIBC, and % saturation), sex hormones including testosterone, B12, D3, magnesium, zinc, and selenium.

      http://hypothyroidmom.com/hypo-like-a-rock-star-hashimotos/

      • Sherry says:

        Thank you so much for your fast reply. I am happy to say that my doctor has tested all the t’s and they are out of wack also. However, my D3 is good. My cholesterol also went up to 278. I just made a list of my pills and supplements 26 is the count, of what they have me taking. Iodine defiency also so putting iodine directly on my arm at night so body can absorb. There is sure a lot to learn. I am puzzled how the body got so out of wack. I am doing different phases to try to get the Neurotransmitters working properly. Phase 1 as me adding Kavinace and Calm PRT this goes on for 2 weeks then I move on to phase 102. Thanks for your site…..it helps putting it down. My husband just doesn’t get it, thinks I should be able to take a pill and be ready to be my perky self again.

        • Dana Trentini says:

          Hi Sherry, I agree that it’s a very complicated condition and the idea of “one pill” solving it all is not necessarily true for many of us. Interestingly I had high cholesterol when first diagnosed and once started taking natural desiccated thyroid which contains both T4 and T3 hormones and got my levels optimal for me, my cholesterol numbers reduced too.

          http://hypothyroidmom.com/is-your-thyroid-killing-you-heart-disease/

  13. Hi Dana,

    I came across your blog about Hashimoto’s being a genetics thing, and I wanted to recommend a book – don’t know if you’ve read it, but it’s quite informative. It’s called “Why do I still have thyroid symptoms if my tests are all normal?” I came across it a few months ago, and while reading it, discovered that it was possible that I had Hashimoto’s myself, but also that it was possible my children had it, because of all things, my husband also has it. The book says something to the effect that there are 7 types of Hashimoto’s thyroiditis, and that 6 of the 7 forms of it will go into complete remission by going completely gluten free. The 7th form requires going gluten free AND going on a thyroid supplement, though they recommend the all natural ones, such as armour thyroid or naturethroid, rather than the synthetic ones. I thought that was an interesting concept, simply because I try to live my life as naturally as possible, so changes in diet and supplementation are more my approach than adding more meds to the pharmaceutical hamster wheel. Apparently, I fall into the 7th category, but being gluten free has changed my daughters too, who I am fairly certain have hashimoto’s. My 5 year old’s teachers kept telling me that they thought she had ADD, because it was so hard to get her to focus on work, and that she is slow moving and it’s like pulling teeth to get her to write in her journal. 2 weeks after going 100% gluten free, they asked me if we had put her on ritalin or something, because she had made such a dramatic turnaround in the classroom. Since this blog is about Hashimoto’s, I thought it might be a good idea to share. If you have hashimoto’s, and haven’t tried going gluten free, try it for 90 days – it’s much harder than it looks initially, simply because the food manufacturers put gluten in everything – think Malt Extract, Soy Sauce, Ketchup, “Natural Flavorings” – you name it. BUT, once you get used to it, it’s really not as hard as you think, unless you are trying to eat out. Then it becomes a challenge, but there are apps for smart phones out there that can help you find gluten free/friendly restaurants. If it works, you will have more energy, your bowels will normalize and become regular (2-4 times a day), the quality of your sleep will improve, and your intolerance to cold will improve, among other things.

    Thanks for having the blog for information for people. Hashimoto’s and adrenal fatigue for that matter are some of the most underdiagnosed conditions in this country. Because of the gluten link to it, there is research going on that it may be the GMOs and pesticides and herbicides that are causing the inflammation in our bodies, leading to increasing numbers of people having this disease.

    Anyway, thank you again for having helped people find out they are not crazy, they are not stupid for listening to their intuition, and they are indeed absolutely correct in trying to seek help. If they think they have Hashimoto’s and their docs say no – find another doc, and listen to your instincts. I was misdiagnosed for almost my entire life. Nobody should have to go through that.

    Sincerely,

    Teresa

  14. I was diagnossed with Hashimoto in 2006. I have been through hell and back. What i didn’t know was that i was suffering long before that, or should i say i knew something was wrong i just didn’t know what. I had tremors, lost weight, i was freezing when everyone else was normal. Then everything reversed. My face and hands swelled like balloons and yet no one noticed but me. My doctor finally noticed my thyroid looked enlarged and sent me for a sonogram which showed nodules which lead me to fine needle biopsy. when i received the paper from my results they were in a enevolpe that they didn’t seal and i was told to take it to my doctor. of course i looked at the results. the results said there was no cancer present but my thyroid was bloody and that it was a sign of hashimoto disease. My doctor never mentioned it when i saw her. Thats when i told her i looked at my results and i wanted to be tested for the antibodies. I had read EVERY thing about hashimoto. She wasn’t happy and sent me for the test. When i saw her again, i was told there is no doubt about it i have hashimoto as my antibody numbers were off the charts. Well i am still miserable, my thyroid is huge and drives me crazy my neck is so swollen. I am tired, tired, tired. I can’t take it anymore and telling my doctor on my next visit that i want this thing ripped out of my neck. I am sick of NO ONE knowing how to treat this disease, just put a bandaid on it with thyroid meds and call it a day. I am sick of NO ONE not even DOCTORS understanding what Hashimoto patients go through. IT IS NOT A JOKE. WE SUFFER ON A DAILY BASIS AND NO ONE CAN HELP.

  15. P.S. In regards to genetics playing a part in getting Hashimoto. Not in my case. No one on either side of my family (mothers or fathers side) no one has ever had hashimoto in the families. I was the lucky first. HAHA. From what i read, stress is the worst thing for your thyroid and seems to play a part in hashimoto. Now that i can say must have been the deciding factor on me getting the disease not genetics.

    • Dana Trentini says:

      Eileen,

      I am certain stress is a major contributing factor to Hashimoto’s as well as hypothyroidism in general. I also worry about the toxicity in our environment, food and water. There are many potential factors at play besides heredity absolutely.

  16. Hi, Dana,

    I am loving your blog! (The more info, the better, to get the word out!) In my family, both grandmothers, a maternal and a paternal aunt have hypothyroidism. I am feeling very frustrated, as far as finding a doctor who will do more than prescribe Synthroid for my Hashimoto’s. I was finally diagnosed after having a TSH of over 150, with antibodies reading 149. (I had reached the point of having hallucinations, deep depression and anxiety attacks.) The endo that diagnosed it and put me on Synthroid said that my thyroid is “dead as a doornail” and I don’t have to worry about it fluctuating anymore. Does that sound right? (I take .88 mcg of Synthroid.) I am on a gluten-free diet, take extra Vit. D, and eat brazil nuts daily for selenium. I definitely don’t want to end up getting other anti-immune diseases due to ineffective treatment! Thanks…

    • Dana Trentini says:

      Hi Gregg,

      Have you found a difference going gluten free in terms of your symptoms and antibody levels? There is a great deal of research on it and I’m happy you’ve gone gluten-free.

      Vitamin D and selenium are also important. Be sure to also have testing for your vitamin D and selenium to be sure the dosages you are taking bring you to optimal. Full testing should include Free T4, Free T3, Reverse T3, adrenals, ferritin, sex hormones, D3, magnesium, zinc, selenium, food sensitivities.

      While Synthroid works for some, it doesn’t work for all of us. For many of us our bodies don’t convert the T4 hormone in it to the active T3 hormone our bodies need so that’s why it’s so important to test your Free T3 levels to see if you would benefit from adding T3 medication or switching to natural desiccated thyroid.

      http://hypothyroidmom.com/which-is-the-best-thyroid-drug-for-hypothyroidism/

  17. My daughter at age 28 has been diagnosed with Hashimoto Disease. I had myself and my husband tested. We both came out fine in the blood tests. I have some symptoms (no hair on arms & mostly none on legs, receeding hairline) I have hypoglasemia which may attribute to that. My aunt and sister has thyroid problems. Can it still be heriditory when I nor her father has been diagnosed with it? Can it skip a generation?

    • Dana Trentini says:

      Hi Kathy,

      There is absolutely a genetic factor for thyroid conditions. I don’t know if it is dominant or recessive but I do know readers tell me about it skipping generations so yes it’s possible. You may also want to have a closer look at yourself and your husband too. Thyroid peroxidase antibodies are often the only test done for Hashimoto’s but there is also thyroglobulin antibodies that should be tested. Also there are people who show up with negative thyroid antibodies but then have a thyroid ultrasound that confirms Hashimoto’s. A great book is Dr. Datis Kharrazian “Why Do I Still Have Symptoms? When My Lab Tests Are Normal”. On his blog he writes:

      Overall immune weakness

      Some people with Hashimoto’s test negative because their overall immune health is weak and they do not produce enough antibodies. Their immune systems have been so stressed for so long that their total white blood cells and B-cells are too low to be able to make antibodies. You have to have some degree of immune fitness to produce antibodies. Many times these people will not test positive for Hashimoto’s or start to feel better until their compromised immune system improves in health.

      These are the people who, after several weeks on a gluten-free diet or on a protocol from their practitioner start feeling great, yet are dismayed when a follow-up antibody panel shows antibodies are significantly higher, or are positive when they were initially negative. In some cases this is a sign that immune health has been restored to the point where antibody production kicks back into action.
      http://thyroidbook.com/blog/page/15/

  18. Rebecca B. says:

    Kathy, Did your doctor test you and your husband for antibodies? They believe that Hashimoto’s is often a combination of heredity and an evironmental trigger. Auto Immune diseases are very complicated. There isn’t a true genetic test for Hashimoto’s so it’s not even known if it would be dominant or recessive. If your aunt and sister have thryoid problems it sounds like there is a hereditary component in your family.

  19. I am the only person in my family with Hashimoto’s. It’s not all genetic. I think mine was triggered by stress and menopause.

    • Dana Trentini says:

      True Linda. I wonder if stress is behind many people’s illnesses. I know that stressful events worsen my thyroid condition every time.

  20. I have had hypothyriodism for 20 years. M thyriod levels where always within normal (tsh, t3 and t4) until 5 years ago when the insurance company insisted I change to generic synthroid. At that time, I was feeling great and all levels where optimal. Since I’ve been in the generic, all my symptoms are back. My TSH was 210.3 last week. T4 was non exsistant….can you suggest anything PLEASE….

  21. I have had hypothyriodism for 20 years. M thyriod levels where always within normal (tsh, t3 and t4) until 5 years ago when the insurance company insisted I change to generic synthroid. At that time, I was feeling great and all levels where optimal. Since I’ve been in the generic, all my symptoms are back. My TSH was 210.3 last week. T4 was non exsistant….can you suggest anything PLEASE…. BTW now taking 375mcg 2x a day if generic synthriod

  22. Kim Jarvis says:

    Hello -
    Here is my story. I am 50 year old female and was diagnosed some 20 years ago with Hypothyroidism. My dad and daughter both were also diagnosed as being Hypo. It was just recently my mom recalled when I was little that my dad had to have his thyroid out. He has since passed away with heart disease.
    Over the years my medication has been adjusted a few times but for the most part my levels have been stable until recently. My levels have been fluctuating so bad that some days I honestly don’t know if I am coming and going. Finally my endocrinologist ordered an uptake scan and has also taken me off of my thyroid medication completely except for the beta block he put me on because of my heart rate is up. (trying to get my levels to drop) He has also said, that I do have Hashimoto’s but really didn’t tell me how to treat it. After going on the web and reading alot – I find most people change their diets completely. I read alot about folk going gluten free and the interesting thing is that our daughter was diagnosed before being diagnosed with hypothyroidism with celiac disease and was put on a gluten free diet for a year before being told by a different doctor she didn’t have celiacs she has a thyroid disorder and put on medication. She actually did very well and all of the “celiac” symptoms disappeared. I guess I am at a lost with several things, I really don’t know why all of sudden my levels just went nuts, two why my doctor didn’t mention anything about a diet change why it took him 2 months to order a scan. What is exactly is that going to show anyway. I know those are questions I need to ask the doctor but just thought I would ask you all. The information I have read can be very overwhelming. I didn’t work all last week because I truly thought I was loosing my mind and my body hurt to bad at times to even take one step. My doctor did finally say after my latest blood test he understand now why I don’t feel well. UGH…Sorry just venting.

  23. Hello…I was 25 when I fount out I had hashimoto. That was the worst feeling in my life. I’ve been to 5 endocrinologist and they were any help. The first doctor I went to was a complete dummy. Never took the time out to explain what the damn disease was. I basically on my own was trying to find out for myself. I was doing all my homework on my own about myself. The second doctor I went to school look like she was fresh out of med school which means clueless..I was explaining to her all symptoms she look at me like I spoke another language. I was tired, weak, sluggishness,joint pain, muscles pain, brain fog, heart racing..everything. I had a very large goiter in my neck. I couldn’t breath couldn’t swallow. It was horrible..The doctor I was going to wasn’t any help. She did an ultrasound on my neck and she was like you have a very large goiter. My mom had to me to go to a great surgeon. He told me that I needed to get it removed. I had it removed and it was cancerous. I’m still looking for a good doctors that’s trying to help me never stick with someone that is not trying to help you.

  24. I have hashi, and I know you use should not have soy, but I think I read somewhere that
    certian types of soy is ok. am I wrong?

  25. PS, I would like to know about this certian kind of soy
    the bars Iam looking at buying are think thin and they say they are gluten free, but I don’t know about the soy. it says soy protein isolate.
    can anyone advise?

    • Dana Trentini says:

      Hi Karen,

      I wish I knew more about the topic of soy and thyroid. I avoid all soy products to be safe, however whether there are certain forms that are okay is possible although I don’t know for certain. Here is an article by thyroid advocate Mary Shomon on soy and thyroid that you’ll find interesting.

      http://thyroid.about.com/cs/soyinfo/a/soy.htm

  26. Hi Dana, after many months of various test confirming I have 2nd stage Adrenal Fatigue, Hashimoto Disease, toxicity to copper, nickel and other things, hormones including IGF1 totally out of whack my endocrinologist decided to do a growth hormone test in August. It came back 74 low, waited 3 months and was retested, had dropped to 40. Went to the hospital for the growth hormone stimulation test. Took about 6 hours of injections to try to stimulate pituatory gland, drew blood every 30 minutes. Results came back last week. I failed it badly. Next step was on Monday, an MRI to rule out tumor. Wednesday I found out no tumor. Next week a nurse is coming to my home to train me how to give myself growth hormone shots. It’s been a long slow process ( started in April) but thanks to a top endocrinologist and his nutritionist they did not think I was crazy and kept plugging away. Neuroscience labs even involved with supplements and following process. I feel blessed to have a professional who listened and finally came up with all of the above. I am hopeful I can start feeling better.

    My advise to others…….just keep trying various tests, saliva test, (24 hour test) urine test (24 hour test) for toxicity problems, and blood work checking hormones and IGF 1.

    • Dana Trentini says:

      Hi Sherry, I’m so happy to hear you have a doctor who looks at every possibility. So great. I’m sorry all you’ve been through. Best wishes.

  27. Hey guys.
    I just got the news today, I have been diagnosed with Hashimoto Thyroiditis. It apparently is a pretty bad case? I dont know to phrase it, I am not a doctor lol.
    I have been on medicine for the past 7 months and my TSH levels went from a 75 to a 18. They will not get any lower. I will have an ultrasound on my thyroid next week to check for nodules. She mentioned that surgery for my case will probably be the best outcome for me, I am just so nervous.
    Here are my questions:
    What are the lifetime side affects of removing your thyroid gland?
    I want more children, how does that affect?
    Does it help with this extra weight I CAN NOT LOSE?
    what does the scar look like?
    does it hurt?
    How long will I be out of work?
    I dont want to miss out on anything in my babies life and I dont want this to affect it. If you cant tell I am pretty nervous about all this, especially since the disease is hereditary. I dont want my child to go through the same things as me.

    HELP!!!

    • I’m not a doctor either but would get another opinion, ask for additional tests. If you are very comfortable with your doctor then you have your answer…..trust her…….make a list of the questions you have and ask her to go over each one. It has taken me a long time but my endocrinologist never gave up and kept doing other test to find out why hormones and other things out of whack, along with having Hashimoto disease and 2nd stage Adrenal Fatigue. Someone will have the answer for you……just trust yourself and do what’s best for you

    • Dana Trentini says:

      Hi C.C, there is hope to have beautiful healthy babies despite Hashimoto’s even without a thyroid. However before deciding on surgery, get a second medical opinion about your case. Here are resources to help you locate a doctor.

      http://hypothyroidmom.com/top-10-resources-to-find-a-great-thyroid-doctor-in-2013/

  28. Lynn Purvis says:

    I was diagnosed with Hasimoto Thyroiditis 23 years ago. On May 26 1991 I quit smoking, on June 2nd 1991 I weighed 140 lbs. and felt great. On July 20th 1991 I weighed 194 lbs. and had gone from a size 10 dress (I still have it) to a size 18 dress, I was cold all the time, I was severely depressed, my hair was like straw, and I was tired all the time. The last 23 years have been a struggle, and I cannot lose weight. Do you have any suggestions?

  29. Hi, I randomly came upon your site when I was searching for information about a gluten free diet and thyroid problems. When I was 15 I was diagnosed with both HASHIMOTOS and Thyroid cancer. I had my entire thyroid removed and it has now been 16 years since that. Although I take synthroid daily, I still have major fatigue and weight fluctuations! I have really never given much thought to it, but even if I don’t have a thyroid anymore is hashimotos still a part of my body? Would going on a gluten free diet help? I have had major issues with infertility because of my thyroid so I am willing to try anything if it will help!

  30. Always when I read about ultrasounds I am really convinced of their importance. There are so many applications – boosting brain, treatments diagnosing. About these last I’ve read great paper. It is very scientific but if someone know little about analizing images it could be interesting: http://www.biomedical-engineering-online.com/content/11/1/48

  31. I was diagnosed with Hashimoto’s disease and Hypothyroidism in November. I am having my 8 year old tested on Wednesday. I will be shocked if she doesn’t have it as well. She has so many of the symptoms. Has anyone put a child on Natural Thyroid medication? I take a compounded form of Armour Thyroid replacement. I am interested in your input…

  32. After a brother inlaw was diagnosed with hashy a few months ago, it prompted my hubby to get tested. He was negative but our 37 yr old daughter was not so lucky. She has it. Our doctor has told us that it is only the female that passes on this disease and now they want me to get tested. Is this true. And can it skip generations.

    • Rebecca says:

      Georgie,
      It is certainly not true that only females pass on thyroid disease. I inherited Hashimoto’s from my father. While it could skip a generation, I have never read anything about it being only passed on by mothers. Since your daughter tested positive, it would be a good idea to have yourself tested.

  33. HI, I have been treated for joint, pain, stiffness, lethargy, menstrual irregularities etc over the last 4 years since my last child was born. My mother describes me as always having been exhausted.
    I am awaiting an ultrasound of my larynx and thyroid as I have a lump.
    I have recently discovered my two half sisters have thyroid problems, one diagnosed with hypothyroidism and the other hashimotos. I cant find evidence of thyroid problems on either side of the family before that, wither the parent that we share or the ones we don’t.
    I have been tested for hypothyroidism several times, e.g. thyroxine levels, but am not aware of any tests for antibodies. What are the chances of having Hashimotos if a half sibling has it? Could my tests so far be clear but I have the antibodies? What, if anything should I be asking my doc to test for?
    I am totally clueless, and very tired :)

  34. What us the benefit of seeing a geneticist fir hashimotos disease? Instead of an endocrinologist.

  35. Hi,

    My sister was just diagnosed with Hashimoto’s at 26- I am 19 and wondering if I should get tested? I haven’t displayed the same symptoms as her, yet have always and many intolerances to foods.

    Thank you y’all help.

  36. michael says:

    I was diagnosed with hashimotos and hypothyroidism a little under two years now. after being missed diagnosed as having ptsd, depression and insomnia for at least 2 years. It took a mental health provider to suggest that I have my thyroid tested. Now that I am on levothyroxin(synthroid) I now can function most days. The issue I am having and am wondering if there are others like me is I find there are moments that feel like it did before I was being treated. I am in a job that stress fluctuates and physical fitness is a must. Most days I’m great but have had days where my muscles have stoped working and I’ve collapsed until they worked again. Usually minutes but up to 45min. My doc says it can’t be the hashimoto because my levels are normal but doesn’t have a clue. Any suggestions?

    • Rebecca says:

      Hi Michael,
      You aren’t alone when thyroid meds fail to make us well. I started Synthroid 3 years ago but continued to have muscle pain and weakness. My endocrinologist also told me it wasn’t my thyroid but allowed me to try Naturethroid. While I continued to improve, I still failed to be free of weakness and pain. Then, two years ago my mother was diagnosed with muscular dystrophy and when I had genetic testing done, my results were also positive. Now, I see a neurologist and receive help for pain relief.

      I certainly am not suggesting that you have anything similar. However, many of us have discovered great improvement with a product containing T3. My father is also hypothyroid and with my suggestions started Armour (Similar to Naturethroid) a year ago. My mom says he has so much energy, he seems like a new man! He is always on the go. This seems to be more of the norm with most people struggling with thyroid disease. When T3 fails to help or all labs are normal, we have to remember that there can be other causes for our symptoms. I hope your doctor is testing your Free T3 to see if your body is converting your Synthroid (T4) into the active form, T3, that our bodies need. If not, please ask your doctor to order more lab work.

  37. Indeed re genetics. My great grandmother, grandmother, mother, aunt , and I all have hashimotos. I was diagnosed at about 8. Surprisingly, my mother was not diagnosed for another 18 years. I have done very well for many many years. However about 4 years ago a doctor mistakenly wrote a script for 1/3 my dose. Bc it was changing I didn’t think much of the pill color change. It was another year before my levels were checked again., since then I cannot get stable again and my symptoms are there even when the tests say normal. Any suggestions for alternate treatments than synthroid?

  38. Kelly sowinski says:

    I had thyroid removed 25 yrs ago due to tumor in gland it was benign now I have positive genetic test for celiac, my mom was diagnosed 1 yr ago with celiac and Colon cancer. Was wondering is it’s been hashimotos all along

  39. Darla ng says:

    This article is interesting. Everyone in my family has thyroid disease because our water source was contaminated by Lockheed rocket fuel. I struggle daily from the effects of Hashimoto’s disease. Do the best you can, there is no simple cure.

  40. Hi. I have a question. I have been tested several times for the Hashimoto’s antibodies. The first two times, I came back “normal”. I never saw those lab and I regret that. I was young and didn’t know any better, at the time. But my question is, the last time I was tested, my antibodies came back elevated. My Antithyroglobulin Ab, Thyroglobulin, Antibody came in at 12.1 with the lab range (0.0 − 0.9). And my Thyroid Peroxidase (TPO) Ab came back at 64 with a range of (0-34). Would this make mean that I do have Hashimototo’s? Most people that I know that have Hashimoto’s have way higher antibody counts. But, I also only have 1/4 of my thyroid gland, so could my numbers be lower just due to the fact that I don’t have a full thyroid gland? I’m waiting to hear back from my doctor. I’m just confused and want answers before my doctor calls. Most people are telling me yes but then I have a few who are saying no.

    Thanks,
    Very confused thyroid patient.

    • Hi Dawn, The Thyroid Peroxidase Antibodies (TPO-Ab) and Thyroglobulin Antibodies (TgAb) are used to diagnose Hashimoto’s. So any value above the normal reference range is used as diagnosis. With Hashimoto’s the immune system mistakenly attacks itself. Given that your antibodies are not far off the normal levels, you should take steps to see if you can treat the underlying immune condition and see if you can reduce those antibodies to normal. There is an excellent book you should read by Dr. Wentz on treating Hashimoto’s. This book is included in this list of my favorite thyroid books if you scroll down the Hashimoto’s section you’ll see the books I recommend on this topic:

      http://hypothyroidmom.com/hypothyroid-moms-favorite-thyroid-books/

  41. The article says that people with Hashimoto’s might have low levels of testosterone and DHEA. Are there optimal levels of sex hormones, similar to how there are optimal levels of TSH, FT3, FT4 as opposed to “normal” levels? If so, what are these levels? I ask because I’m a woman with thyroid issues and my free testosterone is 0.2. Lab range is 0.0-2.2, so that seems a bit low. Thanks!

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