Sometimes, it seems like thyroid disease is medicine's best-kept secret. Thyroid problems are rarely talked about, and laughed at when they are mentioned. You say "thyroid" and people don't think life-changing, chronic disease, they think overweight, middle-aged women. Have you experienced the "stigma" of thyroid disease with family, friends or even medical professionals? What do you think needs to happen for thyroid disease to be as easily discussed as diabetes or breast cancer, for example? What needs to happen to get the word out about thyroid problems, and how common - yet overlooked - they are? Share your ideas! Share Your Ideas
All Hormones Get Neglected
- Thyroid issues get ignored because all your hormones are generally ignored. Everyone needs a panel of baseline hormone tests done; if one is off, probably others are off. All kinds of stress cause physical problems. US medicine only recognizes extreme hormone conditions, ignoring others until extreme. The system is run by money; docs are encouraged to just run tests and dx by them (like a computer program). Let's educate everyone, everywhere we can. I like calling this disease a slow killer, because it truly is. Without thyroid hormone, every cell in your body is slowly dying. That is why there are so many symptoms. Instead, docs tell us we have depression, fibromyalgia, fork in mouth disease, or are just getting older (my favorite–aren't all old people fat, forgetful and lazy?). Also, natural hormones. T4-only lacks all of what your thyroid makes. Other synthetics differ chemically from natural and give side effects, i.e. cancer from synthetic estrogens, etc. Your body knows.
- —Joan4U
Thyroid Awareness
- I recently discovered I had nodules on my thyroid. Only the largest was tested. It was non-cancerous. However, there were many more smaller nodules that were not tested and my doctor admitted that they could be cancerous. I will be gettting my thyroid cut out of my throat, even though there is a large risk because of a large nerve running through the thryroid. I have no choice, but perhaps a death or disability.
- —Guest JEAN
Television
- Why do programs on the TV like Dr. Oz not address this issue? I do not understand why medical professionals do not take this disease or malfunction of the thyroid as a serious health issue. If you get on the wrong medication it can cause you many issues with your health! Yet, insurance pharmacies want everyone on generics to save them money even if it makes the patient nonfunctional. They would never do this with a diabetic.
- —Guest sharirose78
Thyroid Awareness
- I think sticking up posters in a doctor's offices might have start people asking what it is. Question why they have never heard of thyroid issues and whether they may have the disease or wonder if they should get tested. I am living in Ireland and I have came across people that have said they have never heard of thyroid disease. When I was told by my doctor that I had this problem, I was not sick. I went for a blood test and asked the doctor to test me for every thing. My friend did the same. We had seen someone on the street collapse and I said we could have anything wrong with us that we would not know unless we were proactive. My test results came back with thyroid. My friend was diabetic. Neither one of us knew we had these complaints. Something will have to be done. I just never hear of it in Ireland.
- —Guest wyn
Diet, Nutrients and Interconnections
- I find gluten to be an energy drain even if initially it gives me a boost. It may just be raising blood sugar or stimulating adrenal immune alarm response. Potatoes contain a lot of gluten and coat the small intestine upper third, which affects the iron absorption located there as well as destroys villi (I am told by my MD). This activates inflammation in the whole body and can add to weight gain. Nutrient wise, L-tyrosine amino acid (or its pre-nutrient L-phenylalanine) is needed for the T3/T4 conversion and also is needed for Dopamine and Norepinephrine manufacture in the brain. Kelp seaweed in large quantities adds cal-mag & other nutrients as well the iodine. Adds L Glutamine for the muscles, intestinal repair, digestion, brain GABA neurotransmitter, and has anti-fngal anti-bacterial sodium alginate, and 15%+ protein levels. Bread contains bromine that attaches to thyroid iodine receptors and also phytates that block calcium function.
- —louisryoshin
Thyroid Awareness
- People like Oprah and Jillian Michaels don't want to bring attention to this disease because they don't want the public to focus on their disease. They want to be sucessful on what they promote. They don't want to report how debilitating this disease has or is causing in their daily life. I commend Michael J Fox for bringing awareness and all that he has done. There will be no other like him who can bring awareness to the Government and to Science AND promote the amount of dollars he has raised.
- —Monarch59
An Honest Medical Society Is Needed
- If a medical society were formed by doctors who have genuine concern for hypothyroidism and all that that entails, then I believe that that medical society could get noticed. Then it wouldn't be individuals up against the media in the US--it would be an organization--an actual medical society. That would give us some heft. And clout. Then the press would be more likely to pay attention--because it would be an actual medical society. The society can't sell anything-- Not if the medical society is to be taken seriously. Those research papers that get buried in other thyroid medical societies ... could get promoted by a genuine hypothyroidism medical society! Right now ... it's also individuals speaking up to industry thyroid medical societies. But with "our own" medical society we'd be a medical society speaking to another medical society.
- —Guest Diane J Marie
Educate Correctly
- I remember seeing a talk show with a doctor on it when I was a kid. He was talking about thyroid diseases and fat women. He said they learned in med school that you only gain 20 pounds, and it is all water weight. He continued saying Thyroid diseases can't cause overweight. He went on to say if you take hormones for it all the symptoms go away. Med schools have taught the fallacy for eons. I was told the same thing by a doctor when I was forced to switch due to insurance. I high tailed it out of that office! So med schools started it, but we WILL end it with education of the public.
- —Guest Pamala
Guest
- Right now, we have you, Mary. There are also some thyroid patient advocates.Hopefully the doctors who recognize what thyroid problems truly are, get interviewed by you. That's great! However, I think it's time for the thyroid community to move-up to forming a nationwide organization. If it's formed by doctors, then it could be a medical society. It's the bogus medical society that hold-back honest medical facts and promote scams. An honest medical society representing the thyroid community, I think, would get more attention in the media. The doctors forming the organization could, for example, take turns being president for a year. You'd get my support at being the official patient advocate of the organization and an officer! In the Lyme community that's what we have--a medical society formed by doctors who are sincere in their concern: www.ilads.org It functions as an advocate group and a medical society.
- —Guest Diane J Marie
Call it the 'slow killer'
- Maybe if we start calling it 'the slow killer', which it is in my opinion, people would start to pay attention? Most people have to be 'shocked' into acknowledging something like this. Maybe Mary Shomon could start a global petition? I am from Belgium, a small country in Europe, and I found her site in search of more information on my thyroid condition. Other non-Americans need this information too. So Mary, if you read this, what do you think? Could we get enough worldwide response to take it to the media and politicians? You have my vote!
- —Guest Carla Belgium
Secondary hypothroidism
- Even the doctors who do treat hypothyroidism rarely recognize secondary hypothyroidism, which is a lack of TSH from the pituitary gland. My problem is finding doctors who use anything other than TSH level to prescribe thyroid medication. I need thyroid medication because I produce very little TSH, not because the thyroid gland itself is a problem. Unfortunately, the gland eventually dies from a lack of stimulation by TSH. My current endocrinologist tests both TSH and Free T4, the latter being the key. Many prior doctors would not test for the Free T4.
- —YvonneArdith
Underactive thyroid
- I have had an underactive thyroid for the last two years and despite medication I suffer from extreme tiredness, weight gain and joint pain. Endocrinologists here don't inform you enough about your condition. Unfortunately, my condition is hereditary. Every day is a battle to face the tiredness and hold down a job and then there is the self esteem issues with the weight gain. Luckily, so far I have lost a stone in weight since my thyroid has been regulated which has taken six months. I am hoping I can lose another two stone.
- —Guest maureen
Change Thyroid Stigma
- I tell everyone I know about my hypothyroidism (Hashimoto's) and all the symptoms, etc. A few have decided to be tested themselves. So get out and talk to everyone and the available help. The Mary Shomon books are a Godsend!
- —Guest aefmbr
Male Poster Child
- I think we need a male poster child! My brother almost died because his hypothyroidism was mistaken for fatigue following OT on a new shift. He was put on a heart transplant list after he asked his wife to take him to the doctor. The doctor examined him and called an ambulance to take him to the ER because his organs were shutting down. He had the typical moon face, extreme fatigue, boils, and very prone to infections. If he had been my sister instead, I am sure he also would have had the menstrual problems no one wants to hear about, and then I would have TOLD him what was wrong. But because he's male, none of us recognized his predicament. (Mother and us 4 girls are all on thyroid hormone replacements.) Surely there is a man out there somewhere who is confident enough of his maleness that he would be willing to shout from the rooftops: "MY THYROID DOESN'T WORK RIGHT, AND I WANT SOMEONE TO TREAT ME SERIOUSLY!" Maybe someone would hear HIM.
- —Guest Marilyn
Media Attention
- The media -- The media is responsible for getting things out into the open or for awareness. It will take a popular show host that has the disease or a family member has it in order to bring awareness! It could also take a man who has it to bring media attention. As long as this is a women's issue, you can't count on it getting out to science. Why isn't there a Walk-for-the-Cure or a 10K run, run for the cure, $100 a plate meal, thyroid expo to donate to science! The news media needs to cover this to bring attention to it on a health segment or something Somebody needs to tell the media about this epidemic so they can give air time to this on a health segment. Why was thyroid month kept so quiet! They interviewed a lady on TV that had a weight problem. That's all they compare to this disease is being overweight.
- —Guest Monarch59
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