I'm new here, and an American, so I hope you don't mind me posting here.
I believe I've had hypothyroidism for about 13 years. I've always been a low energy person who gained weight easily, even as a kid. However, I did not get symptoms until my late 30s. My symptoms were extreme fatigue, oversleeping, and heavy and erratic menstruation. I was diagnosed three years ago (when I got health insurance for the first time - thank you Mr. President!) I was put on 0.5 mcg and later 0.7 mcg of levothyroxine. It took about a year to stabilize but I feel pretty good now. No symptoms. I was tested for hashimoto's and the test came back negative. I've asked the nurse practitioner that I see several times what the root cause of my hypothyroidism is, but she just brushes the question off. How can I find out what causes this condition?
About the same time the hypothyroid symptoms started, I had another issue. My skin would sometimes become extremely sensitive. This happened when I ate certain foods (junk foods and grains, mostly), when I was under extreme stress, and even when a took too hot of a shower. My skin would turn bright red, mostly on my face, arms and legs, and would get so sensitive that I could not wear clothes. My theory is that this condition was caused by an overactive immune system.
About five years ago I changed my diet radically. I dropped all sugar and white flour and started eating high antioxidant fruits and vegetables. It seemed to help, but not cure my skin condition. Then about two years ago I started taking a teaspoon of Amla powder (Indian gooseberry) every day. To my amazement, that seemed to cure my condition. I've since added daily turmeric and other herbs and spices. My skin is completely normal now (although if I fall off the wagon and eat junk food for long enough I start feeling tingles in my skin). I also have allergies in the spring and summer and have to take an antihistamine.
I've read that over 90 percent of hypothyroidism is caused by hashimoto's, which I've been told I don't have. I'm wondering if my overactive immune system could be in some other way responsible for my hypothyroidism? Or was I born with an under active thyroid? My family has no history of hypothyroidism at all. Is there any way to find out for sure what causes hypothyroidism?
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isolda_r
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You can edit your post and remove the tags if you want - few people pay any attention to them anyway, as far as I know. If you look under your post you'll see a little square with a v in it. Click on the v and several options come up. Click on Edit.
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I think it could still be hashi's, I have hashi's and get a flare up if I eat gluten or dairy, if my antibodies were tested now they would prob be low. If I was having a flare up they would then be higher. For some people they only need to eliminate grains some need dairy some need both and many other things to keep the immune system stable. If you were to start eating your "junk food" you would prob start to feel quite poorly and if your antibodies were then tested, I reckon they would be high enough to get the hashi's diagnosis. But the why's and where's are not so important as keeping yourself healthy and keeping your immune system stable........
That really makes sense. I wasn't having a flair up when I was tested for hashi's, so I guess my immune system wasn't producing antibodies. I wonder if my thyroid gland was permanently damaged? I'll have to read up on hashimoto's now. Thank you!
I don't think anyone looks at the tags, anyway. lol
It is very, very difficult to find out why you are hypo. Most people never manage to find out. And, even if you have Hashi's, the question then is : how did I get Hashi's? Most of the time, we just don't know.
But, I have to say, one negative test does not completely rule it out, because antibodies fluctuate all the time. Did you actually see the numbers? Because doctors sometimes say it's negative when it isn't. They are reluctant to diagnose Hashi's, because they don't know what to do about it. Plus, they don't even call it Hashi's half the time, they call it 'autoimmune thyroiditis'. Plus, there are two tests, and most of the time they only do one. So, many, many reasons for wanting to see the actual numbers.
They just sent me a letter saying that I did not have hashi's. I don't have any symptoms right now and I'm told all my numbers are within range, so would it do any good to get tested again?
No point in getting re tested, you would prob have to make yourself feel quite ill in order to hopefully get a positive hashi's diagnosis, an by doing so would damage your thyroid further. The autoimmune flare up would attack the thyroid and do more harm than good. I would try to get a copy of your blood tests and do a new post with your numbers and reference ranges. It is always helpfull to have some of the more knowledgable take a look. But to be honest if you are now feeling well and your flare ups have stopped I would keep doing what your doing as it seems to be working.....
If I eat stuff that causes a flare up it makes me feel very ill sometime for days or weeks. I just assume that would be the same for everyone. Isolda has said she had terrible skin flare ups that she feels were connected to her thyroid then she changed her diet and all the skin flare ups stopped. My reasoning was in order to get her antibodies high enough she would have to start the flare ups again.......So my deepest apologies if that information is incorrect. I would never knowingly give people incorrect advice so if I have done so I'm very sorry!!
No worries. I'm going to talk to the nurse practitioner again and see if she can explain hashi's and if I could have it even with a negative test result. I'm grateful for your input.
Pixielula , well, that sounds more like her diet was at fault than her antibodies, she was eating something that didn't agree with her. And you don't always feel bad when your antibodies are high - although I doubt any research has been done on that.
isolda_r , it is worth testing again if you can, but best to get both types of antibody done - TPOab and TgAB. Some people do have Hashi's without ever having high antibodies, though. They are diagnosed when their thyroid is scanned.
But, it won't make any difference to the way your doctor treats you, because there is no treatment for autoimmune. And, I very much doubt if your nurse will know very much about it. You'd probably be better off googling it, than asking her.
But, whatever she tells you, do check up on it, because I've heard of nurses giving out the most horrendously false info/advice. They're often less well informed than doctors - and that's saying something!
I think it's more like stress and what I was eating was causing my immune system to react and pump out histamines that caused my skin to act up. A doctor once told me that my sensitive skin was immune related and hereditary. My mother has allergies and trouble with itchy skin as well. Whether that is related to my thyroid troubles, I don't know.
Doesn't what you eat impact your antibodies that then In turn attack your thyroid? I have this very loosely explained understanding in my head that goes along these lines....... I eat wheat, my gut can't break down the proteins and those proteins then get though (leaky gut!) into my blood stream whereby an auto immune response is set in motion. As these proteins are so similar to the thyroid proteins my body attacks itself.....It makes me feel like I'm going down with some horrible virus all my glands swell up and it can take a day or a few weeks till I start feeling better. So am I wrong in this and if so why can't I have dairy or gluten. I was diagnosed 20 years ago and told I had autoimmune thyroiditis. I only found out it was hashi's very recently but have been gluten /dairy free for 10 years as It just made me feel so ill to eat it. Every time I think I have some kind of understanding on this turns out I'm wrong!!!
Just found this in another post sorry it's long but I don't know how to attach a link .....
This article is part of a special report on Thyroid Disorders. To see the other articles in this series, click here.
In the first article in this series, I showed that hypothyroidism is an autoimmune disease in 90% of cases. In this article we’re going to discuss the connection between autoimmune thyroid disease (AITD) and gluten intolerance.
Several studies show a strong link between AITD (both Hashimoto’s and Graves’) and gluten intolerance. [1, 2, 3, 4, 5] The link is so well-established that researchers suggest all people with AITD be screened for gluten intolerance, and vice versa.
What explains the connection? It’s a case of mistaken identity. The molecular structure of gliadin, the protein portion of gluten, closely resembles that of the thyroid gland. When gliadin breaches the protective barrier of the gut, and enters the bloodstream, the immune system tags it for destruction. These antibodies to gliadin also cause the body to attack thyroid tissue. This means if you have AITD and you eat foods containing gluten, your immune system will attack your thyroid.
Even worse, the immune response to gluten can last up to 6 months each time you eat it. This explains why it is critical to eliminate gluten completely from your diet if you have AITD. There’s no “80/20” rule when it comes to gluten. Being “mostly” gluten-free isn’t going to cut it. If you’re gluten intolerant, you have to be 100% gluten-free to prevent immune destruction of your thyroid.
So how do you find out if you’re gluten intolerant? Unfortunately, standard lab tests aren’t very accurate. They test for antibodies to gluten in the bloodstream. But antibodies in the blood will only be found in cases where the gut has become so permeable that gluten can pass through. This is a relatively advanced stage of disease. Blood tests will miss the many milder cases of gluten intolerance that haven’t yet progressed to that stage.
Stool analysis is far more sensitive, because it detects antibodies produced in the digestive tract that aren’t yet escaping into the bloodstream. Using this method at Entero Lab, Dr. Kenneth Fine, a pioneer in the field, has found that up to 35% of Americans are gluten intolerant.
In addition to the stool analysis, Dr. Fine’s lab uses a cheek swab to test for the genes connected with gluten intolerance and celiac disease. People with HLA DQ genes are more likely than the general population to have autoimmune disease, celiac disease and gluten intolerance. Dr. Fine’s research shows that more than 80% of Americans have one of these gene types.
When I first read Dr. Fine’s research, I was astounded by the implications. It suggests that 1 in 3 Americans are gluten intolerant, and that 8 in 10 are genetically predisposed to gluten intolerance. This is nothing short of a public health catastrophe in a nation where the #1 source of calories is refined flour. But while most are at least aware of the dangers of sugar, trans-fat and other unhealthy foods, fewer than 1 in 8 people with celiac disease are aware of their condition. I would guess that an even lower proportion of people are aware they are gluten intolerant.
One reason gluten intolerance goes undetected in so many cases is that both doctors and patients mistakenly believe it only causes digestive problems. But gluten intolerance can also present with inflammation in the joints, skin, respiratory tract and brain – without any obvious gut symptoms.
As much improved as Dr. Fine’s methods are, they aren’t perfect. In some patients with autoimmune disease, their immune system is so worn out they can no longer produce many antibodies.
Hashmioto’s, the most common autoimmune thyroid condition, is primarily a Th1 dominant condition. I’ll explain what this means in further detail in a future article. For now, what you need to understand is that in Th1-dominant conditions, the Th2 system is suppressed. The Th2 system is the part of the immune system responsible for producing antibodies. When the Th2 system is severely depressed, the body’s ability to produce antibodies is impaired. The levels may be so low that they won’t show up on a test. So, even if you have gluten intolerance, your test for gluten antibodies may be falsely negative if you have Th1-dominant Hashimoto’s.
This is why I recommend that you avoid gluten if you have AITD, regardless of whether tests show an active antibody response. This is especially true if you have one of the genes (HLA DQ1,2, or 3) that predisposes you to developing gluten intolerance. In my opinion continuing to eat gluten when you have a confirmed autoimmune condition simply isn’t worth risking the immune destruction it could cause.
In fact, the more I learn about gluten and its effects on the body, the more I think we’d all probably be better off not eating it. Mark Sisson has written extensively about the dangers of gluten and gluten-containing grains, so head over there and have a look if this is new to you. The short version: foods that contain gluten (both whole grains and flours) contain substances that inhibit nutrient absorption, damage our intestinal lining, and – as I’ve described in this article – activate a potentially destructive autoimmune response. What’s more, there are no nutrients in gluten-containing foods that you can’t get more easily and efficiently from foods that don’t contain gluten.
The good news is that if you have AITD and are gluten intolerant removing gluten completely from your diet will dramatically improve your health. It’s not easy, but it’s worth it.
Oh, wow, I had no idea gluten intolerance was so widespread. I'm pretty sure that I tolerate gluten well. I dropped all wheat and gluten out of my diet for almost two years when my skin was really bad, and it made no difference what so ever. I added whole wheat and rye back in to my diet with no problem, but some other grains I can't eat. I can eat seitan, which is pure gluten (vegan meat substitute), with no problem. However, corn bread and corn chips make react and some of the multiple grain breads do as well. Amaranth, a grain which is supposedly gluten free, makes me react. Cotton seed oil, often found in processed food, also makes me react. It's weird because I've had multiple allergy tests and the docs say I am not allergic to anything. The immune system is very complicated and I wish I understood how it worked better. Thanks so much for the enlightening article.
It wasn't my arrival I found it on someone else's post but I'm glad I did as that is what I was explaining earlier. I know I react to wheat and dairy. I had to see a consultant earlier this year and he wanted to test me for Coaliac disease but I would have to eat gluten for six weeks prior to the test. Now I know eating gluten makes me ill on top of the bloating and diarrhoea the pain and discomfort I get in my gut, it also makes me feel like I have a virus, aching muscles, joints, swollen glands ect. I just couldn't make myself feel that unwell in order to get a diagnosis that I kinda knew anyhow. Whatever the result I'm still gluten and dairy free, so knowing would not make a difference to my lifestyle! Hopefully you will get some answers and not more questions.........
Food allergies go along with hypo, could your extreme sensitivity be caused by monosodiumglutamate which goes along with junk food? I have a particular sensitivity to salicylates which are the natural preservatives in food, a salicylate free diet is unhealthy and extremely restrictive. Hope you find your answers.
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