I am a 58 yr old female in the UK and have the Hashimotos form of low thyroid function. Due to my GP surgery not seeing patients in person for 2 years during the Covid period, I wasn't diagnosed and got to the point of having almost no memory, unable to eat anything (no appetite) and yet putting on two stone in weight, the skin of my eyelids hanging low over my eyes so I could barely see out, and when I rang the GP they put me on hormone replacement therapy without seeing me. Later, another GP did bloods for everything (without seeing me) and diagnosed low thyroid and prescribed Levothyroxine (without seeing me). I asked if this would stop my swollen eyes and she said sarcastically, 'If this was a beauty therapy, we'd be giving it to everyone!' Only a year afterwards did I get to see a GP. They said that with the 75 levothyroxine my values were all back in the normal range. They have never given me a single piece of advice or information about the disease, not even on how to take the meds, and I have never been referred to a specialist.
Initially the medication did have a miraculous effect including returning me to my normal weight, being able to eat again, and my eyes going back to normal etc. However all this time on, I am still exhausted continuously and have constant brain fog and digestive issues. Recently, my social media has been flooded with adverts for blogs and websites and supplements suggesting that Hashimotos can be managed or at least partially reduced by diet. A lot of things have rung a bell - I used to be exhausted and have brain fog for 20 years after suffering from glandular fever and was practically an invalid in my twenties, reading health articles all the time to try to find out what the root cause of my chronic fatigue was, and buying all the latest 'miracle' supplements. But when I was 38, I finally realised that I was intolerant of gluten and soya and cut them out and my life changed completely and I spent my forties and early fifties fitter than I ever was in my twenties and thirties (caving, climbing, canoeing, hill walking, mountaineering, doing a degree as a mature student etc). Also, my whole life I always craved and ate protein and barely ever ate carbohydrates - not because of some faddy diet, merely because that's all I ever wanted, which fits with these blogsite claims that low-thyroid sufferers need lots of protein because they don't process it properly.
However, some of these diets seem quite extreme (although you're supposed to be able to add things back in eventually) and the articles smack of snake-oil salesmen. When I cut out all gluten and soya I felt so well until recently that for twenty years I've never taken another supplement. I know from my own experience that excluding food items that don't suit your body can have radical positive effects, but I am suspicious because the tone of these articles is very pressurised and nearly always entails trying to sell me some 'miracle-cure' supplements.
Have any of you had any success in helping your Hashimotos low-thyroid function by following any particular diet or using any particular supplements? Reports of your experiences, whether good or bad welcome!
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Huffalump
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If they're trying to sell something - anything - ignore them. There might be a grain of truth in what they're saying but life's too short to waste time trying to find that grain. And they'll tell you anything to make money!
So, I imagine that over the years you've done a lot of genuine research and know that Hashi's is an autoimmune disease where the immune system tries to destroy the thyroid, mistaking it for the enemy. And that it is often triggered by glandular fever, and is unlikely to be 'controlled' by diet, although controlling diet is an important part of staying as well as you can.
As more and more of the thyroid is destroyed, there is less and less thyroid tissue capable of making thyroid hormones. And thyroid hormones control every part of your body. So, you become sicker and sicker in ways that do not - on the face of it - seem to have any connection. But the connection is low levels of thyroid hormone: hypothyroidism.
And one of the symptoms of hypo is low stomach acid. So digesting food and absorbing nutrients becomes very difficult, resulting in nutritional deficiencies. And each of these deficiencies causes it's own set of symptoms, on top of all the other symptoms of low thyroid hormones.
So, on this forum we always suggest initially testing the core nutrients - vit d, vit B12, folate, ferritin - and supplementing as necessary, along with cofactors (e.g. vit K2-MK7 and magnesium with vit D).
Taking supplements you don't need won't do anything to help you - and could be dangerous! More is never better. However, raising levels of nutrients in which you are deficient - or even just low - can work wonders, getting rid of a lot of debilitating symptoms. For example, raising vit D could eliminate joint pain. And low B12 will cause a whole host of symptoms very much like hypo symptoms.
But, whilst this will help with your general well-being, it will not do anything for the Hashi's itself. That will continue to take its course until your thyroid is completely destroyed and you will still need thyroid hormone replacement for life.
As for diets, well, depends on the diet. And the person. We're all different. And a lot of Hashi's people have food sensitivities such as for gluten. For some people a gluten-free diet is a life-saver. It did nothing for me. But, I - like you - cannot tolerate soy. And I found that out through an elimination diet. So that is really worth doing. But it's still not going to have much effect on the Hashi's itself. That is there for life, and all you can do is try things to make life as comfortable as you can around the disease.
All this is common knowledge - well, with patients it is, doctors know nothing about any of it! And that knowledge is out there for free. But there will always be people new to the disease that are susceptible to falling prey to bloodsuckers out to make a quick buck out of vulnerable, desperate people. So there will always be vultures out there trying their luck. But at the slightest hint of paying for anything, be it knowledge or supplements, back out quick and ignore it. May well be that the said supplements will help you, but you'll find cheaper on Amazon! And anyone that talks about controlling or reversing Hashi's, just dismiss them out of hand. If that were possible, we'd all be doing it! And now you've found this forum - well done, you! - always ask on here before buying, taking or believing anything! That's what we're here for.
Thank you for all your helpful information. I can't believe that I've never looked around for a forum or help from other people. Finding this forum was a complete fluke. But I was diagnosed during Covid (while nursing my dying mother etc!) so I just got on with it.
Huffalump, an elimination diet really helped me although as a greedy food lover I found it hard to do. It confirmed what I suspected- though hoped it wasn’t true! - that gluten was an issue. But more importantly, it showed an even bigger problem with dairy which was a surprise. I can’t say I noticed a difference in my Hashimoto’s after cutting these out but it sure made a difference to my digestive discomfort. I later came across the Autoimmune Paleo diet which I also found useful and there are lots of resources to help you with this including great recipes and clear guidelines about how to reintroduce foods because it’s important not to cut out more than you need to. I’ve moved on now but here are some of the resources that were useful to me although there are probably lots of new ones out there now too:
Hashi's and or menopause caused me to do a really deep dive into what my body did and didn't like, I became dairy intolerant, nightshades and histamine also triggering, I'm ok with gluten except barley and can't do amaranth or buckwheat... life is a whole lot better without these!
It seems that many find dairy an issue after starting Levo, there are thoughts that taking a hormone orally seems to trigger this 🤷♀️
Hashi folk tend to have low stomach acid so don't absorb well which is why many of us supplement B12, Vit D, folate and ferritin these are the key ones but many take magnesium, selenium, zinc etc
Have you any recent results you can add? (best to add to profile as makes a handy resource)
Thank you for your support. After 15 years of feeling so much better after removing gluten and soy, I know that I am going to have to bite the bullet of finding out what other items are causing me digestive issues!
I am going for my annual blood test at the end of this month, so if it is common practice to add the latest results to our profiles, then I will do that then! Thanks for the suggestion.
They said that with the 75 levothyroxine my values were all back in the normal range.
Unless you are extremely petite 75mcg is very likely too low a dose of levothyroxine
Which brand of levothyroxine are you taking
Do you always get same brand
What vitamin supplements are you taking or were you taking
yes many, many members find strictly gluten free diet beneficial or essential
And dairy often an issue too
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)
NHS only tests TG antibodies if TPO are high
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Essential to test vitamin D, folate, ferritin and B12
Lower vitamin levels more common as we get older
For good conversion of Ft4 (levothyroxine) to Ft3 (active hormone) we must maintain GOOD vitamin levels
VERY important to test TSH, Ft4 and Ft3 together
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
Thank you for all your information. I will follow up on your links and advice. I need to start studying all this. Because I am at sea from April to October every year and I was diagnosed in January, I just took the meds, had one blood test, had it upped by 25 mcg from 50 to 75, had another test, was told everything was okay now, and I just took the meds and ran... Had to be on a boat!
I am due my annual blood test at the end of this month, so I will follow your advice about dosage timing before the test and pay more attention this time to the results and learn more about what they all mean.
I think I get given whatever brand is available - it doesn't always seem to be the same one.
There is so much information out there, especially on autoimmune diseases it seams, and everyone seems to have a cure for it. In fact, a lot of it is mixing science with science fiction and there might be some truth in there, but on the whole, the conclusions are very dubious. I am always very, very suspicious of any websites that pick out a specific item that is supposed to be the culprit and then offer a supplement for it.
There is no such thing as a 'miracle' for Hashimoto's, and unless you have been mistakenly diagnosed and have not got it in the first place (unlikely here in the UK as you have to jump through hoops to even get to a diagnosis), sadly there is no reversal.
Supplements can certainly help to support you with your thyroid function (such as folate, Vitamin D, Vitamin B12 and iron) to ensure that you can convert your T4 (levothyroxine) to T3. However, they will not help if you were not prescribed the correct dose to start with. Many GPs and endocrinologists are dosing according to the almighty TSH, so patients do not get the correct amount of thyroid hormone replacement for their metabolic needs. No diet or supplements can help with this.
Food intolerances appear to have increased over the last decade and there is a lot of information out there, but a direct connection to autoimmune diseases is less clear. It is certain that as we age, we can develop intolerances, for example lactose intolerance in older adults can be caused due to a reduced production of lactase (enzyme). However only 1 in 10 adults in the UK are lactose intolerant (higher in Asian and African populations) and dairy allergies are rare. Lactose intolerance also does not involve the immune system such as a dairy allergy, so if you are lactose intolerant, you can still eat dairy products that contain little or no lactose (hard cheeses, lactose free milk etc.), so you can still enjoy some benefits of dairy without the discomfort. I would be very careful to eliminate it completely, as dairy is an important source of essential amino acids, that cannot be readily replaced by alternatives.
If people feel better on an elimination diet, then by all means. However, you need to be aware that it can lead to nutritional deficiencies over the long term so it is not as clear cut.
The lactose content of medicines is usually quite low - levothyroxine usually contains less than 65 milligrams per tablet if used as an ingredient. Below the amount that is usually thought to be tolerable even to those with proved lactose intolerance.
Yet many seem to find that levothyroxine products that contain lactose are less well tolerated than lactose-free.
I've now tried five different lactose-free levothyroxine tablets - and all but one have been a better experience than the lactose-containing ones. (The exception was Teva - which appears to cause issues in all too many.) Not sufficient difference to be entirely certain of the idea. And one case does not make a study!
I suspect that there is something specific to levothyroxine when the product contains lactose. (Not meaning there couldn't be other products which have similar issues.)
Could it be simply that we secrete lactase enzyme when we eat. But we take levothyroxine away from food. Hence, even if we can produce sufficient lactase for our usual diet, there might be none to process the lactose in the levothyroxine tablets?
This is just speculation 😅, but when we eat, we chew and this stimulates digestive enzymes in the stomach and gallbladder and they get released to deal with the incoming food.
When we take levothyroxine, we just take it with a gulp of water, so no chewing involved. So perhaps there is no stimulation of digestive enzymes to deal with it? In sensitive people who may have low levels of lactase to begin with, this could perhaps cause some issues?
I think lactase is mainly secreted by the small intestine by epithelial cells, hence when not enough is secreted, it can cause bloating and abdominal discomfort as the lactose cannot be properly digested.
You are right. But I was skipping half the description!
Production of lactase appears to require a final step which involves enzymatic removal of a part of the molecule. Pancreatic enzymes, probably trypsin do this. At least, if I have interpreted this paper correctly!
A comprehensive overview of substrate specificity of glycoside hydrolases and transporters in the small intestine
Thank you for your advice and reassurance that I may not need to completely cut out dairy which I love, even if I find that I am getting more sensitive to it with age! I eat a lot of fermented dairy products which make me feel better and is good for the gut biome. I will keep an open mind.
what are your most recent TSH, Ft4 and Ft3 plus vitamin D, folate, ferritin and B12 levels
Common for levels to go off a bit post menopause
Guidelines of dose Levo by weight
approx how much do you weigh in kilo
Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or somewhere near full replacement dose (typically 1.6mcg levothyroxine per kilo of your weight per day)
Adults usually start with a dose between 50 micrograms and 100 micrograms taken once a day. This may be increased gradually over a few weeks to between 100 micrograms and 200 micrograms taken once a day.
Some people need a bit less than guidelines, some a bit more
If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).
I’m 59 in May, Coeliac with Hashimoto’s hypothyroidism - my gluten free diet (for well over a decade) has done nothing for my thyroid TPO antibodies the only positive for me is hopefully ward of several vulnerabilities us coeliacs get along with being monitored. I have never felt the same again ever since on this diet and on Levothyroxine… but I have to be honest possible onset of perimenopause was also a thing to consider… and I have gynaecological conditions too with late menopause.
With a gluten free diet there’s the risk of deficiencies predominantly low B vitamins, fibre calcium etc so if not including these back in your diet or supplementing, this is an area to watch or get tested…as gf items by law do not have to be fortified like gluten flours cereals are… going gluten free if reliant on manufactured products, you will be eating lots of rice and corn based and umpteen emulsifiers, gums and other nasties you wouldn’t otherwise have and these have caused me gut problems ironically - I was an asymptomatic coeliac (no digestive problems) found by coincidence- see my profile.
Gluten free manufactured products are not healthy foods, in fact worse than other alternatives sometimes. I avoid wherever I can or choose higher fibre pastas which is predominantly the only free from item I buy regularly, other than variety of gf flours. There’s many naturally gluten free foods and I try to stick to those best I can but do make sure you getting all nutrients you’d otherwise be omitting as further down the line other problems can arise.
I do see that many report getting some relief from going gluten free, as it’s known to be inflammatory as newer grains are modified for yield (another entire post need on that history) but I would never suggest anyone to go gf without knowing the pros and cons and testing for coeliacs first.
I would always try to work with your GP although I know many aren’t getting their needs met in their appointments and thyroid issues do get glossed over due to lack of knowledge on medical professionals side and it’s frustrating I can only say read up on your conditions go in armed with what you want from the appointment and stick to your guns to get the right treatment- but NHS do have restrictions so it’s not a personal attack on patients their hands are tied guidelines and criteria to be met.
If your GP is adamant it’s not thyroid or menopause related and have gone down those avenues… dig deeper… if you’re still getting symptoms.
You are right to be weary of these “influencers” regardless of qualifications- it’s appalling even qualified ones push supplements and restricted diets on people , without knowing the patients history be that eating disorders or anything medically., never outline any problems that can occur…And what’s worked for one doesn’t mean it will work for another… supplements aren’t regulated like prescribed drugs and you can be buying a lot of rubbish, even if a “celebrity“ endorses it.
Thank you for your answer and advice. Luckily, I was addressing gluten issues 15 years ago when my GP surgery had more resources and they sent me to a dietician, for a coeliac endoscopy, and for a scan for osteoporosis. (They took it a lot more seriously than my diagnosis with underactive thyroid - even though it was driven by myself and they had not even suggested dietary sensitivities as a possible source for my extreme chronic fatigue and constant agonising digestive pain). Just to reassure you, I don't eat any processed foods and only eat supermarket gluten free products when I am obliged to when travelling and can't get anything else. I make all my own food including bread and the occasional sweet treat using whole foods and often grind my own flour from whole grains. I always joked that I had no intention of cutting anything else out, but now I feel it might be time to experiment a bit. I felt rather like I was drowning in all these supplement claims again after being able to ignore them for years, so support from sensible people like you is very valuable, thanks!
I use a commercial one by Dr. Westin Childs cause I got tired of buying so many bottles of vitamins and not knowing if I had the right amount and since I didn't have money to private pay for very expensive of vitamin levels . Vitamin A 450 mcg, Vitamin D3 5mcg, Iodine 75 mcg , Vitamin E 33.5 mg, Zinc 5 mg, Selenium 100mcg, Guggul Extract 500 mg, Ashwagandha 200mg, Rosemary 50mg. I showed this to my massage therapist that I go to for joint and muscle issues who is knowledgeable about Natural medicine and treats people with issues related to cancer treatment in short she is no quack and she said everything in it was good and she didn't see any problems . T4 is the thyroid hormone, but if your body is nutrient deficient it won't convert T4 to T3 which is how your body uses the hormone . Conversion is a huge problem most doctor ignore cause it is just easier to assume your thyroid is broken and replace your T4 , but the replacement is ineffectual because your body doesn't convert the added T4 and your TSH keeps going up . I think this supplement helps . I know I feel better . Been on it 2 months now and plan on continuing . Being off the "Levothyroxine Rollercoaster " now since later 2017 has been a blessing and now I am just dealing with the damage I relate to having used the stuff for 4 3/4 years , that is my story .
For anyone with Hashimoto's it is not advised to take iodine (you get iodine from the conversion of T4 to T3), so I say that this supplement you are taking will do you more harm than good in the long term. And even if the supplement is from Dr Westin Childs, it does not necessarily mean that it is any good for you or based on sound evidence!
And why would you take supplements you do not need? For example the guggul extract are plant sterols - well, if you have high cholesterol that might be okay (but will the dose then be sufficient?), but if your cholesterol is okay why take it? If hypothyroid patients are treated appropriately with thyroid hormones, there should be no need for a cholesterol lowering ingredient. Another example, 5mcg Vitamin D in this supplement is 200IU - that's one third of your RDA (which is far too low anyway), so again, you would need to take an additional Vitamin D3 supplement to raise your Vitamin D levels sufficiently, if your levels are low.
If you really want to help your conversion, you need to test your core nutrients and supplement those that are deficient with high quality ingredients. Any of these elaborate supplements (which are just fancy multivitamins) will just empty your pockets but really do not contribute much to your overall thyroid health.
Hello, I agree with the more protein and craving it to feel better. I too am having more energy, less rashes (only if eat gluten), no hot flashes, no more ringing in the ears, brain fog, constipation, etc. I plan to stay mostly protein and healthy fats (bacon, butter and meat fat) . I thought it sounded crazy goes against everything I have ever been told so I always ate lean meat (chicken) and salads. I starved my brain and body of fat and protein and ended up with Hashi's. I take 60mg NP Thyroid, baked grinded eggshells for calcium and magnesium. Good luck!
Wow, it sounds as though you have found a pathway that suits you. All my adult life I felt guilty for feeling like I would collapse unless I ate a beef steak or venison stew or other very dark red meat after a period of extreme exertion (several days of climbing or canoeing a river etc) when my husband was doing exactly the same thing and yet sitting down afterwards to a goat's cheese salad! The waitress always tried to hand him the steak and me the salad... Also I loved fats and have never been able to eat more than a small amount of carbohydrate and loathed sugar. It went against the health advice of the last three decades (apart from the sugar!). Also, the vegan agenda gets ever stronger due to carbon issues and I would dearly love to help the world by being vegan, (all my stepchildren and all their friends are vegan or vegetarian) but I need meat, dairy, and eggs to feel even marginally human. I was able to cut out three quarters of the meat immediately I passed the menopause and had my last period. I imagine the menstrual need for iron and B vitamins was driving the desperate craving. I have upped nuts and pulses to replace some of the meat, and use a lot of olive oil in my cooking and am addicted to avocados. But reading all these thyroid diet blogs has been reassuring in a way, because I know longer feel like a freak for being unable to give up meat when all the climate advocates are advising us to do so! (As an aside, I sound like a spoilt brat - olive oil - venison - avocados! But actually I am on a very restrictive budget and I eat these things to give myself a complete diet because I really cannot afford all those expensive supplements that try to persuade you that if you don't take them for years on end you will suffer a relapse.) Thanks for your answer and all the best for your own health journey!
You are very welcome! Thank you! Yeah, I tried Vegan for a bit and lost fat in my face and I am hoping with meat and fat it will come back but not sure. I didn't realize how undernourished I was until I began eating mostly red meat, bacon, butter and eggs. My husband and I would go out and he would order steak and I would order the salad. For the first time in my life, I'm 56, I feel satiated after a meal. I always ate about an avocado a day for what I thought was healthy fat and I cooked in olive oil too. Now I read cooking in olive oil isn't good because of the smoke point. If it smokes it's turning toxic. So I cook slower on little lower heat in grass-fed butter and ghee they both have a higher smoke point. Good luck on your journey. Follow your body's instincts. It sounds like yours is guiding you correctly. I had stopped listening to mine for so long I did not sense any direction.
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Am I right or am I wrong here? Little argument with someone on facebook
THYROID ANTIBODIES SHOULD YOU HAVE ANY AT ALL?
Any advice or experience of vit d supplements?
Thoughts on the underlying causes of Thyroid disease
Soya milk
