Hashimoto's. But doctors say to not treat. Why?

Hi there. I was recently diagnosed with pernicious anaemia causing a b12 deficiency as well as hashimoto's. They say I have an inflammation of the thyroid but that it should settle on it's own and that I should check my thyroid regularly to make sure it doesn't go hypo. At the moment I'm slightly hyper.

Can any of you explain why it shouldn't be treated?

Also it seems that with hashimoto's one has to eat a gluten free diet.

Which seems like a very daunting prospect.

Does any of you have any knowledge about that? Does that also count when I'm not actually being treated for anything?

Is it only if I also have celiac disease? (Something I'm considering getting tested for as well)

Any experience and advice would be greatly appreciated!

41 Replies

  • Nadpa, most doctors don't treat the autoimmune disease (Hashimoto's) but treat the resulting hypothyroidism when the thyroid gland eventually fails and can't produce sufficient hormone. In the early days Hashimoto's attacks the thyroid gland causing inflammation and swelling. As the attacked cells die off they dump hormone into the blood. Eventually the attacks will atrophy your thyroid gland and it won't produce hormone. Your thyroid levels must be a little high if you've been told you are hyper. They can't treat you with anti-thyroid drugs because they will make you hypothyroid and because your thyroid levels are high Levothyroxine will increase levels and make you more hyper.

    Gluten-free diet helps many people to reduce frequency of Hashi flares and to reduce antibodies. It doesn't work for everyone but may be worth trying for a few months to see whether symptoms improve. If you intend having a coeliac screen you should continue eating gluten until after your test otherwise you will skew results and may get a false negative result. Even if you are coeliac negative you may benefit from gluten-free but the only way to tell is to try it for 3 or 4 months.


  • With Hashimotos it is possible to swing from being Hypo to Hyper. Do you have your thyroid blood test results with ranges ? If so post them in a new post for people to comment. How high are your anti-bodies ?

    When I was diagnosed with Hashimotos back in 2005 - here in Crete - my antibodies were high but the TSH - FT4 - FT3 were all in range. I started T4 treatment as my GP said it would help to support the thyroid whilst under attack.

    You can have false negatives for coeliac. Just being gluten sensitive can cause problems. You have a lot to cope with - so do hope you soon feel stronger.

    How are you being treated for your PA ?

  • Thanks for your reply and kind thoughts. I actually don't know the exact numbers - but will ask my doctor for them now. I only know that I have anti-bodies and that the T4 was slightly raised and the thyroid inflamed and leaking.

    It's weird - some doctors give meds and others don't. It sure is a confusing thing to have to deal with.

    Was given two b12 injections for the b12 deficiency and due the next one with a three month interval.

  • You may need to have your injections more than three monthly. Many do. Back in the 70's they were monthly - then later bi-monthly and now every three months. If it is a cost cutting exercise it is criminal. I am fortunate to be able to buy them OTC here in Crete for so little money - and the syringes - so I have injections weekly. There is a campaign going on for this to happen in the UK which you can find on b12d.org

    Have you joined the PA Forum here on HU. So many very knowledgeable people with all the right links for info ! Lots of us here are on there too ! They will give you good support in dealing with your GP should you need injections more often.

  • Thanks for this info!

  • Hi, I don't know very much but what I do know has been gleaned from a USA site for ladies who have hypo and also Hashi's. From what I understand Hashi's is NOT thyroid therefore Hypo meds don't work. What does work is GF and Clean Eating which is basically Paleo diet. You are more at risk of developing Hypo and other auto immune illnesses if you have Hashi's tho.

    Sorry I'm not very informative but I'm quite new to all this too :'(

  • Its called hashimoto thyroditis. I am from USA. It means that you swing from overactive thyroid to underactive. Medication does work! It only should be started when your thyroid calms down (if necessary). I think she should follow her MD's advice and monitor. That is what I did with excellent results. I agree that Levothyroxine can agitate the thyroid. That is what happened to me! When I took natural desiccated hormone (Armour) it worked perfectly. I believe following a doctor approach of monitoring is very wise. Your advice to "eat clean" paleo/gluten free is excellent. It helps the health in general.

  • Please know as far as celiac disease / food allergies - they can come and go.....Mine keeps changing....a menopausal issue. To get the system back on track its wise not to worry if you are or aren't celiac... just good to eliminate inflammatory causing items for awhile and reset your system. gradually adding one at a time to see what happens...

  • Celiac disease does not come and go, so far as I know. Unless you have a peer-reviewed research reference which proves otherwise, of course - if so, please cite it. Once it has come, it is there. For life. A failure to worry will not improve celiac disease either, which is an autoimmune disease, like Hashis. Nor will dealing with inflammation help it.

  • You treat right away. You treat in order to stop the destruction of the thyroid. Treatment stops the swings from high to low. ndt can make some people worse. Celiac doesn't come and go. Your information is off. Please recheck.

  • The internet can be very confusing, Lesley. Hashimotos is in fact an autoimmune condition in which the body attacks its own thyroid. It is a thyroid disease. "Clean eating" will, unfortunately not cure it.

  • I didn't for one minute intend to imply it would? I know it's auto immune and that clean eating is better for it because it avoids inflammatory foods.

  • Will be tough to avoid gluten forever. Argh!

  • As Marz says the coeliac test may not show a problem. My coeliac tests have been negative, but I have had food intolerance testing which shows that I am sensitive to wheat and oats. Giving up these (following a mainly gluten free diet) sorted out swollen joints and lifelong indigestion. Later I tracked down my intolerance to potatoes which make the inside of my mouth swell.

    What I'm trying to say is that the gluten free diet is worth trying regardless of coeliac test results.

  • Thank you. Yes that seems to be the overall thought. Avoid gluten. Sigh

  • If you do want to do celiac testing don't go gluten free until afterwards as you need to eat sufficient gluten for the tests. If you come off it of your own volition and find out you are celiac or intolerant, then you'll not want to go back to eating gluten for testing (as I found out) because symptoms are so bad. ;-)

    There's a group on here called Gluten Free Guerillas that's worth joining.

    Some people use low dose naltrexone for auto immune diseases. You could look into that. The hyper to hypo swinging is no fun - it makes one feel so ill and in my case I also felt mentally all over the place as I found hyper made me feel one way with a sort of nervous 'wired but tired' energy, and hypo or heading hypo made me feel very low and apathetic.

    If you find the hyper state is unbearable, you could talk to your doctor about whether a short term beta blocker might be suitable - they help control the high heart rate and calm the system down (less anxious, speedy, on edge feeling).

  • Thank you. Yes I've been affected mentally as well. A lot of anxiety. Like a total breakdown. So now on antidepressants and been off work for a few months. I normally have a high profile job and work many hours, so not a common thing for me. But it seems my low b12, the hyper condition, as well as some post traumatic stress, not eating well, not sleeping well, and not doing any exercise, resulted in a breakdown. I never assumed that the mental thing had anything to do with something physical and it is only when being tested for fertility (have tried for a baby for 5 years) that they found these two autoimmune conditions. Now I can't hep but think there's a link as symptoms of both are the same as an anxiety disorder.

  • Ah I'm sorry to hear you are suffering so much.

    I have read of people being misdiagnosed with severe psychiatric problems - being sectioned with bi-polar even, only to later find out it was thyroid related!

    I never had anxiety until I started to develop this autoimmune condition. I find it frustrating as it feels terribly out of character and it is so unpleasant & impractical when trying to advocate for oneself. It feels as if I can't cope with stress (can also be linked with adrenals) at all really. I've been working on a lot of coping techniques!

  • With Hashimoto's, the thyroid going hypo and hyper (back and forth, typically) is a SYMPTOM of the auto immune disorder. Treating the thyroid doesn't do anything to stop the auto immune attack. While taking specific nutrients to support thyroid function is warranted, it's the immune system that needs to be treated with Hashimoto's. Otherwise, the immune system will continue to attack the thyroid tissue and hormones in the body, and no amount of thyroid hormone in the world will make it stop.

    The reason why a gluten free diet is recommended for Hashimoto's is because the gluten molecule resembles the thyroid tissue and hormone molecules. Other molecules that are similar in structure also include lactose, coffee, and a few others. When the immune system is compromised, it will attack everything that resembles its enemy, which makes the thyroid attack even worse. So going gluten/wheat free, and sometimes even dairy free, coffee free, can substantially stop the attack on the thyroid.

    Bottom line: you've got to address the immune system, while supporting thyroid function. This means healing the gut and assisting the liver detoxification pathways. This is the only way the attack on your thyroid will stop. The attack on thyroid initially results in inflammation in the thyroid, which can present as hyperthyroidism, as the thyroid works harder to save itself. After a time, the thyroid tuckers out a bit, and this presents as hypothyroidism - but in truth, it's not really the thyroid's fault. This is why it's important to give support to the thyroid with specific nutrients while it's under attack by the immune system, while simultaneously working on healing the gut and liver.


    -wheat and gluten



    -iodine - including iodized salt - use Himalayan or Celtic sea salt instead

    -stress, as much as possible

    -starvation and calorie reduction - your body needs fuel to heal!

    -carb deprivation - your brain needs glucose, at least 120 grams a day!


    -inflammatory oils, particularly PUFAs, like canola, soybean, safflower oils, margarine

    -excessive exercise, particularly cardio - very inflammatory and catabolizing to your body, which is already being catabolized by your immune system!

    -staying up too late/getting up too early - lack of sleep

    Consume and/or increase:

    -high quality protein, including glycine (found in bone broths, organ meats, and gelatine - you can also take it supplementally in capsule or powder form)

    -vegetables - especially the "goitrogenic" ones - the cruciferous veggies - your liver needs the nutrients found in broccoli, cauliflower, kale, etc - just cook them in butter to negate the goitrogenic properties, and don't eat them in extreme excess

    -rest and sleep

    - stress relieving activities, such as meditation, leisurely walks, and playing

    -fresh fruits

    -high quality SATURATED fats, like butter, ghee, and coconut oil

    -monounsaturated fats like olive oil

    -turmeric/curcumin, as it helps the liver detox pathways and also assists with cortisol regulation

    -fermented foods like sauerkraut - great for the gut!


    -sunshine exposure - try for 30 minutes a day, if possible

    -B vitamins, especially B12 and folate

    -breathing exercises - gentle breathing, just 5 minutes a day is adequate

    -antioxidants, especially vitamins ACE and selenium

    -N-Acetyl Cysteine (glutathione precursor)

    -undenatured whey protein powder (glutathione precursor)

    -Superoxide Dismutase (S.O.D.) - excellent antioxidant

    Have cortisol levels checked, as well as estrogen and progesterone levels, as progesterone deficiency/estrogen dominance often causes a huge autoimmune response that can trigger Hashimoto's. (This is why so many women get diagnosed with Hashi's after giving birth - once the baby is born, there is no longer a placenta producing mass quantities of progesterone, while estrogen levels remain quite elevated.) In some cases, bioidentical progesterone supplementation is recommended to help stop the estrogen based autoimmune attack.

    There's a whole lot more - but these are a few of the basics. I hope you find this helpful, and wish you a happy recovery.

  • Thank you so so much for this very insightful and detailed text. I know you're right, but a life without diary and bread, especially rye bread of which I eat a lot, is just such a sad thought. But you're right, gotta help my body. That's the least I can do. I will do the coeliac test, if the doctor agrees, and then whether testing positive or negative, I'll start on the diet... sigh

  • I went gluten free as I am recently diagnosed coeliac and hashis. It's not easy but as soon as you realise that gluten equals poison for some of us it soon switches your way of thinking. I am already feeling so much better. Good luck

  • Wow, l know this was a year ago but Thankyou so much 1133 for such detailed info. I have Hashis and horrendous struggle to keep going and your info is so helpful. I really didn't know coffee in moderation was not ok but will look into it. Hope you are getting well. thank-you again, holly333

  • I left my hashimoto thyroid untreated until I had very noticeable symptoms. This was per doctors GREAT advice. I am on a sublinguial dosage and feel great. Once you start these meds your body gets lazy and it needs more every couple of years. Please know there is minimum weight loss from this item. I was told until it was 8.0 plus consistently not to mess with it. At that point I had super chills, some lightheadness and major constipation and yeast infections.

  • Are you saying don't treat Hashis until the TSH is over 8???!!! Perhaps I am misunderstanding you.

  • Noooo. Some people have to treat at 4.0 TSH. It depends on your t3 and t4 and your antibody count. My antibody count was not too high. Also my t3 and t4 were normal until my tsh hit 8. Again, an endocronologist should make the call when treatment begins.

  • Yes. The more we can stay off meds the better I guess. thanks

  • Follow your doctor's advice.

  • Hi Nadpa, there are so many underlying reasons for your thyroid gland to act up. If they know it is Hashimoto's they must have taken some tests. Do you know if they found antibodies? There are several to look for. Do you have cysts or nodules? This can be complicated and often they would like to wait it out rather than determine what is going on. This is an example or two of autoimmune thyroid problems. Very short videos.

  • Thanks for this. Yes they found anti-bodies. Not sure which though. But it was a very good endocrinologist in London who did the tests on me.

  • If gluten causes leaky gut, the immune system gets confused and attacks some part of the thyroid gland (as the videos explained). Other issues also cause leaky gut like too many antobiotics, too many refined products, etc. It's a real lifestyle change to correct this and usually they just prescribe hormone. Some feel it helps stop the attack.

    I see 1133's good explanation for leaky gut. I will say that not all bread is made from grains that have gluten.

    Can you get your results and post them?

  • Nadpa, I would only say - definitely do the celiac test. And eat gluten till you do it, as everyone says. You need to rule it out. I assume tests have shown thyroid antibodies. Have they also shown antibodies to intrinsic factor and/or parietal cells? Sounds like you probably have been found to have at least one of these, and this is common, Hashis and autoimmune gastritis overlap by about 35 per cent. The overlap with celiac is much smaller, maybe 5 - 10 per cent. You would be very unlucky to have that too, but it is possible. Many people on this forum have PA and Hashis and they will support you here. Have you joined the PA forum too? It is also very good.

    Your body finds absorbing nutrients difficult and you need to work to supply the ones which support the thyroid, (but not iodine, or at least not iodine until you have done a lot of homework on iodine, it can make things worse). There is a lot of good advice on this above, and elsewhere if you search through this forum.

    Once you have the celiac result you should then trial gluten free to see if you are gluten sensitive. My guess is that if you have PA and Hashis you will have a gluten problem. It's not that bad. I've been gluten free for 10 years and lived. Again, you will get a lot of support here.

    On the plus side - this is fantastic. You have two clear diagnoses that will give you the thread to find your way through the Minotaur's maze to recovery, to escape to better health.

  • Thanks! Yes had anti-bodies to intrinsic factor and the thyroid antibodies. Lovely to hear that you have been happy - and survived ;) - on a gluten free diet. And thanks for the statistics. Encouraging to hear. I guess it's just a big change I need to deal with. I'm naturally a very skinny person and eat a lot of bread and diary to get weight on me. Also I'm not a great cook, do more work than cooking, so I guess it's just about doing some major life changes. But like you say at least they've found something I can now deal with.

  • You can eat all the fish and meat and eggs and vegetables and Really Good Soups and nuts and rice dishes and usually oats and fruit - and gluten free cakes are usually almond flour based and therefore much more nutritious and much much yummier.

    So you have a Very Nice Time ahead.

    Plus chocolate.

  • Haha! Ok! doesn't sound too bad :)

  • It should not be treated because:

    1) The doctors don't know how.

    2) The doctors don't want to spend the time to learn how.

    3) The doctors don't want to spend time treating it.

    Pardon the sarcasm!

  • See a good doctor. What is happening in the UK? There are a ton of great endocronologists in USA.

  • Sorry for my run on sentence. Celiac Disease doesn't come and go! My food allergies did . Celiac Disease is very serious. According to my doctor and medical reference, truly 15% of the world populations have it. They may be slightly gluten sensitive. If you have celiac disease you are gravely ill extreme fatigue, digestive issues.

  • Perhaps the worst thing about celiac is that the digestive issues can come on slowly, so you don't really notice how bad things have gotten. After I got off gluten, it took about 9 years to get all the autoimmune/hormonal stuff fixed, before my digestion returned to what I now recognize as normal.

  • WOW - At least you got there!

  • Going gluten free is not as hard as it sounds. There is a lot of info on the internet, many recipe books and most supermarkets now have an isle devoted to gluten free. I am now both gluten free and dairy free. I have substituted milk with sugar free coconut milk available on the UHT (long life milk) shelf of all supermarkets. I make my own bread (less expensive) and my own yoghurt using coconut cream (carton is better than canned). Being gluten free is said to reduce antibodies...This has worked in my case. You should also eliminate added sugar as that is an inflammatory. You can find loaf/cake recipes that use mashed bananas and natural orange juice as a sweetener. You may also need to take necessary vitamin and mineral supplements as hashimotos can decrease the gut's ability to absorb nutrients. Selenium, zinc and magnesium are 'musts'. Vitamin B complex may be beneficial, plus vitamin B5 and B12... the latter taken in sublingual form (under the tongue) for maximum absorption.

  • Thanks for the encouraging words and tips!

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