Hi Polly, gluten has a major effect on Hashimoto's because gluten proteins resemble thyroid tissue, so your immune tries to get it OUT of your bloodstream and while attacking gluten, it damages your thyroid. We've learned this recently through many of the seminars like The Broken Brain.
The problem begins because wheat gluten is damaging to the gut lining in varying degrees for each individual. It causes the junctions to open up and then allows undigested food and gluten protein to pass through to the bloodstream. Your immune system is called to action when foreign bodies have entered the blood.
Enzymes have an important function but our pancreas, gall bladder and stomach acid have to have the power to meet certain demands. It can be a vicious cycle so relieving your immune cells of the extra duty should be beneficial.
I know! I just learned today that marmite isn’t gluten free & I had it twice in last week. So I guess I haven’t been GF these last 5 weeks. So frustrating.
Personally I would never presume to leave or alter the dose of Levothyroxine without the absolute agreement of my doctors. If alternatives worked there would be no place for drugs in the first place. This is not to say that yoga and supplementary diets etc can't be helpful in any disease. Making oneself as healthy as possible while living with disease is sensible. And of course if there are elements in your diet you know you react badly to then leave them out. But whether diet alone would 'cure' thyroid problems I think is very doubtful.
Understood Amaryr- I just thought if you can help your thyroid function & reduce its burden can you lower Levo dose (in time & after testing) & increase general wellness.
I’m not intolerant to gluten but if I can reduce the workload of my immune system by cutting it out it’s got to help a bit. Im trying zinc too & in a few weeks will add selenium.
I’m perhaps not the best person to answer this because I’m not a great believer in supplements. Probably because my background is as a lecturer in anatomy and physiology and the body is pretty good at balancing the requirements for vitamins and minerals from a decently balanced diet. The vitamin industry is very good at parting us from our hard earned cash! In cases of malnutrition or disease or if a normal diet can’t be eaten then I’m sure a good nutritionist would advise. But on the whole I’d prefer to spend my money on good quality food. As to lowering your Levo dose I’m wondering why you’d want to. The dose is titrated to replace the thyroxine you’re not producing naturally. Good luck though whatever you choose.
Thank you. Thank the only reason to reduce the dose is if I can get the thyroid functioning better so it needs less help from an artificially made replacement hormone.
I presume you have a thyroid issue if you are on this forum? Or know someone who has? Thanks guess yp don’t supplement with vitamins etc but I just wondered if you follow any special diet ? Thanks again
Yes a good diet is always best - sadly we are not what we eat but what we absorb 😊 Having followed this forum for seven years it is very clear that thyroid issues result in poor absorption due to lowered stomach acid in some cases - and with the ensuing dire results ...
I for one do not have a Terminal Ileum so metabolizing B12 is not possible. The damage was done before I learned about neurological issues caused by a less than optimal B12 and I now self-inject with good results on my damaged nerves.
I was also low on VitD - very common with Crohns and other auto-immune conditions - and after several years of being here in Crete and eating a VERY healthy diet - I tested insufficient - as did hubby !
If it doesn't grow don't eat it - is my mantra - and I spend lots of time chopping and prepping food to maintain health. From reading here I am not sure Nutritionists have all the answers. We are all so individual ...
I started teaching yoga some seven years ago at 65 - so my Anatomy and Physiology knowledge is good. Understanding how balancing the chakras balances the hormonal system is golden - as is the whole practice. Again not for everyone 😊
Have read through some of your other posts and glad to read of your recovery ...
Thank you Marz. Educational and interesting as always. I am currently being treated for Lymes (I tested positive through a German lab- UK testing for Lymes is v unreliable) with doxycycline & it’s pretty hard going but I’m hoping it will do the trick to eliminate or significantly reduce the pathogen burden so I can complement with supportive therapies and get my immune system on track to kill the Lyme & co infections. Then I will hopefully improve thyroid function too.
I have learned a lot from you & many others on this group. I wish I had found you sooner.
I’m so glad you have gotten your life back after the difficult health issues you’ve had to face.
Also good quality food can be very hard to find. Even organic is sprayed here in the US.
And I believe our nutritional info food charts need to be overhauled here as so much soil is overused and depleted.
Our food and nutrition is not what it once was. And because we are so spread out here and food has to travel long distances often even our produce is sprayed to keep it at least looking fresh longer.
There are so many things done to food here that don't have to be revealed to the public I often wonder what I am eating even when I shop carefully.
I believe supplements complete food nutrition and replace basics that handling has destroyed.
Polly91 - not sure if you are still monitoring this, but I had been on 75mcg Levo for years and went gluten free to help with constipation (not aware at ALL it could help me absorp my medicine!) Within 4 months my TSH dropped from 2.7 to 1.3, my single nodule disappeared and my TPO antibodies went from 140 to 17. I have suffered terribly since going gluten free and slowing reducing my meds and am making progress slowly. I read that once you have been overmedicated it is a slow/hard road back to feeling better.
This is v encouraging. My TPOs have halved so I think it’s working. But I have cut out almost all grains & dairy. I too wonder if I might be over medicated now? My last TSH was lower about 0.34. How and when did you realise you had become over Medicated? My Levothyroxine is 100mcg 5 days/week & 2 days 75mcg. Sorry to hear you suffered a lot. I too have a few issues but not sure the cause. It might be adrenals in my case?
In April a doc upped my meds (but in hindsight I should have lowered them from going gluten free and having much better absorption) and by August I was so sick on and off but mostly on - felt fluish, head pressure, weak, rapid pulse, sweating at night, wired. At this point I was on 75 + 20 Cytomel and I had been gluten free about 6 months. My blood results turned hyper and a very observant doc in early Sept (who looked at my pulse and other symptoms that more pointed to hyper like the head pressure, sweating at night, high pulse) had me start reducing meds. With the first reduction in just 4 days I felt like a new person. So, since Sept my symptoms have been on and off and less severe as well. Since Sept I have stepped all the way down to just 44 mcg Levothyroxine (T4) a day and after 3 really good months symptom are creeping back in - which tells me I am still saturated and need to reduce further. I have learned that if you are Celiac or extremely gluten sensitive going gluten free WILL cause you to need less meds - if you google there are lots of medical reports out there. I have seen 5 docs this year and NOT ONE OF THEM picked up on this until my current doc did. When she said "look, your TSH cut in half on it's own, your only nodule disappeared and your antibodies are normal - you might not even need the meds" - I about FELL OFF MY CHAIR. It had not occurred to me my symptoms could be from better absorption/overmedicated. Blood tests during this step down phase are a bit unreliable because as your gut heals you continue to absorb more and more and your body is constantly playing catch up - so it's been a bit up and down for me. See link to a great article below - look at the 2 charts - you can see this lady's need for meds went way down within 2 months of going gluten free - but then bumped back up before leveling out. I read it can literally take 6 months to a year and I think you have to remain 100% constant on gluten free and dairy free so the absorption rate stays the same as you are trying to find the "sweet spot" with your meds. Hope this makes sense!
I too found out I have loads of food sensitivities so since 3 weeks ago have followed the “diet” no grains except quinoa & a few other changes. I went dairy free in mid October & gluten free in August. I had the stool sample test with zonulin & I was told I have a very leaky gut so I’ve been working on healing it.
I think my thyroid is reacting to all these changes. My TSH was 1.44 in October and 2 weeks ago it was 0.34 and v interestingly my T3 has gone right up. I’m a bit nervous that as I continue to focus on gut health with diet changes will I become hyper ? I get palpitations occasionally & can’t gain weight but other than that I’ve not noticed anything. How quickly did it happen to you & what did you notice first ?
Are you coeliac? I’m not according to blood tests. But food sensitivity tests came up intolerant for milk dairy grains eggs etc x
I am not Celiac but I am severely non-celiac Gluten Sensitive. The doctor who discovered it said she wished I would be Celiac so I would take it more seriously! So you may not be celiac but you could be very Gluten Sensitive.
What sort of doctor was it & which test? I had the blood test & I was told not coeliac but the leaky gut stool sample showed I was intolerant to lots of things. Is that how your doctor assessed you too?
That really helps. Thank you for sharing. When you had them done were you gluten free? I went properly gluten free in August & I had the GI map test done in early October (after 2.5 months of antibiotics) & these are my results:
IgA 630 (510-2010)
Anti glad 42 (0-157)
Calpritectin 140 (<173)
Zonulin 349 (107) I think this is a measure of leaky gut???
But I recently had a stool sample via a private gastro enterologist (not functional ) & these are my results from late November
Elastase 444 (>200)
Calprotectin 22 (0-50)
So I think the diet change has made a difference but it’s left me a stone lighter than I want to be. Also I had saliva tests & showed my cortisol was high. Might explain weight loss? Poor sleep? Did you have that test or these symptoms?
Polly - I was NOT gluten free when I had the GI map done! So that is why my numbers were SO BAD. I had the GI testing done Sept 2017 and that is when I learned I was so gluten sensitive and had severe leaky gut and immediately went gluten and dairy free. Two months later is when all my horrible thyroid symptoms started on and off - and I do believe that is when my gut was healed and I was absorbing SO MUCH MORE of my medicine. So I was overmedicated - having head pressure, rapid pulse, wired, weakness, exercise intolerance, hot flashes - all hyper symptoms.
It looks like your gut healed and was in pretty good shape after you were gluten free 2.5 months - and most likely (if you are like me) you started absorbing more of your thyroid medicine which caused symptoms for you.
I have read so many medical reports on all this! I have learned 3 things:
1) it takes roughly 2 months for your gut to heal and absorb better after going gluten free (this doesn't work for everyone! but I think people like me who are very gluten sensitive it DOES!), and
2) the average person, after healing their gut, will absorb roughly 50% more of their thyroid meds. SO, for example, if you were taking 100mcg of Levothyroxine (T4), you discover you are gluten sensitive and go gluten free, then 2 months later you (might) need roughly 50% less medicine, or 50mcg of Levothyroxine.
3) my blood test were unreliable - as I was cutting back on meds my body was constantly trying to catch up and my bloods didn't really match how I felt all the time until it got really bad.
September 2018 (A YEAR LATER!!) I FINALLY realized after going gluten free that I was overmedicated (AND NOT UNDERMEDICATED as several doctors thought!) and started stepping down my meds. Since September 1, I have gone from 75mcg Levo + 20mcg Cytomel to just 25mcg of Levo!!! Huge reduction. My routine has been to reduce 25 and wait 6 weeks for a blood test and more importantly see how I feel... slow going! But EVERY step down had made me feel MUCH better within a day or two (the last step down my waking/resting pulse went from 86 on the 1st day to 76 on the 2nd day to 61 on the 3rd day and head pressure totally GONE!!! And my routine is I will feel much better for about 6 weeks and the symptoms start again - as my body still has too much Levo.
After reading your posts it sounds like your symptoms and mine are very similar from overmedication due to gluten free!
I've been putting all my symptoms down to Lyme or viruses when many could actually be thyroid related? The symptoms are overlapping so it's confusing. I only had heard tightness - like someone pressing down on my head from late August which was when I had given up gluten (?4 weeks) but I was putting it down to Lyme disease? I also had dry mouth & dryness everywhere (eyes, ears, genital) which was new. I have never experienced these before but it could well be over medication? But I've only dropped my dose by 25mcg on 2 days per week so on those days I take 75 & on the other 5 days I take 100mcg levothyroxine. But my results in June (pre the diet and dose change) showed I was very under medicated. Think my TSH was 3.7 & my T3 about 4 if memory serves me right. My TPO were ~250 back in June. My functional endocrinologist said when he met me in August & then October that I looked ill & he commented on my hair loss (something I hadn't even noticed!!) and told me I had sick euthyroid? I guess at that time lots of changes were taking place. But I saw him 2 weeks ago & my TSH is 0.3 & T3 is above 5. My TPO was 100 so less than half what they were 6 months ago. I'm wondering if I might be creeping into over medicated again as I do get palpitations & hot hands & feet (did you ever get that?) & sometimes I feel low & tired but it seems less & less. Weight still v hard to gain - I'm trying everything but it's not coming back on. Any ideas? Dryness is also not completely gone but it could be due to menopause.
My next test will be January so I'm interested to see what it shows. You said your bloods were unreliable?
After my food intolerance test mid November I've given up most grains dairy eggs & a few strange things that came up positive like apples kiwi & garlic & ginger??! So do you think 4 or 8 weeks after changing my diet again will heal my gut? It certainly feels better.
My leaky gut was the most my practitioner has ever seen (so she said) but I think a lot of it was due to 9 weeks of antibiotic. It might not be just gluten for me so will be interesting to see what it's like after 8-12 weeks from significant diet change.
Did you ever have the coeliac blood test? My GP did it & said I wasn't coeliac. The gastroenterologist said I wasn't gluten intolerant based on looking at my insides as you would see signs even if I had given up gluten for 6 months ??
Not really sure what to do next eg drop to 75mcg for 3 days per week & 100mcg 4 days? But endo said not to change anything yet despite my recent "good" thyroid tests. He wants to wait till end January.
Any thoughts? Why are you on cytomel? Do you have recent results with TPO & T3?
Also do you supplement?
Thanks a lot & sorry for the questions but like you say I think we have lots of similar symptoms & situation.
Hi Polly - sorry for the delay! My boss has been in town and I haven't had a minute to write! So I just copied your last note here - so see my answered underlined.
I've been putting all my symptoms down to Lyme or viruses when many could actually be thyroid related? Yes I have had some standard and some weird symptoms - many of the same as yours. The symptoms are overlapping so it's confusing. I only had heard tightness - like someone pressing down on my head from late August which was when I had given up gluten (?4 weeks) but I was putting it down to Lyme disease? I read a number of medical reports and medical web sites that indicate "intracranial pressure" - pressure in your head can absolutely come from thyroid overmedication. It is one of my primary symptoms that comes and goes as I have battled to reduce my thyroid meds over the last 4 months. I also had dry mouth & dryness everywhere (eyes, ears, genital) which was new. I have never experienced these before but it could well be over medication? I cannot believe you are saying - I have had the VERY same thing - the dry mouth and head pressure and just feeling yucky are my main symptoms. I have absolutely noticed dryness in vagina too (I'm 57 so not much going on there anyway) - but yes I have read the thyroid hormones somehow affect mucus linings in your body - so I DO think it is from overmedicated as well. But I've only dropped my dose by 25mcg on 2 days per week so on those days I take 75 & on the other 5 days I take 100mcg levothyroxine. But my results in June (pre the diet and dose change) showed I was very under medicated. Think my TSH was 3.7 & my T3 about 4 if memory serves me right. My TPO were ~250 back in June. My functional endocrinologist said when he met me in August & then October that I looked ill & he commented on my hair loss (something I hadn't even noticed!!) and told me I had sick euthyroid? Honestly my blood tests during the first 6 months when I had "mostly" gone gluten free were just did NOT reflect how I felt! I have read MANY reports/blogs where people had felt awful (bad palps, head pains, anxiety, aches, etc - all hyper symptoms) for YEARS and finally talked their docs into reducing meds and had vast improvement. I think there are people whose bodies are too saturated and thus they have symptoms but bloods don't reflect it. I guess at that time lots of changes were taking place. YES!! But I saw him 2 weeks ago & my TSH is 0.3 & T3 is above 5. My TPO was 100 so less than half what they were 6 months ago That is great you are going in the right direction!! . I'm wondering if I might be creeping into over medicated again as I do get palpitations & hot hands & feet (did you ever get that?) & sometimes I feel low & tired but it seems less & less. I don't get hot hands/feet but I DO get hot/cold on and off quite often. I have read that pulse is a good indication you are overmedicated. Also had an old retired intern tell me before they even had blood tests they used the "high pulse pressure" test. That is you take your blood press pressure and subtract the bottom number from the top. For example, yesterday my blood pressure was 135/78 (135 - 78 = 57) so my pulse pressure = 57 (the normal range is 40 - 60 - higher readings mean hyperthyroid and lower readings mean hypothyroid). THEN multiply that number by your pulse. Mine pulse was 73. 57 x 73 = 4161. If the result is 3200 or over you should cut your thyroid med in half. I can't vouch for this, but if you google "high pulse pressure" you will see that it is related to hyperthyroid. Weight still v hard to gain - I'm trying everything but it's not coming back on. Any ideas? I somewhat battle with this too and when I feel the worst is usually when I have the most trouble gaining - again I think it is because I've been overmedicated. Dryness is also not completely gone but it could be due to menopause.
My next test will be January so I'm interested to see what it shows. You said your bloods were unreliable?
Yes during the first 6 months when I was about 90% gluten free my bloods mostly looked normal and didn't reflect phases where I felt really bad - but the last 4 months I have been 100% gluten free and my blood has shown a definite trend - I had a blood test in Oct when I first dropped from 75 to 50mcg Levothyroxine a day. My TSH went from 6.8 to 2.3 in 6 weeks!! But at 6 weeks my symptoms started creeping back in and that told me I needed to reduce more. So I just last week dropped form 50mcg to 25mcg. Fingers crossed I keep this does the trick! I think I told you in my last note that I read the average person who goes gluten free (and is gluten sensitive) reduced their med by 50%.
After my food intolerance test mid November I've given up most grains dairy eggs & a few strange things that came up positive like apples kiwi & garlic & ginger??! So do you think 4 or 8 weeks after changing my diet again will heal my gut? It certainly feels better.
YES! I think you will see a lot of improvement at 6 weeks but I also think you really HAVE to be 100% good diet for your body to process meds at the same rate all the time. Not good if you eat a little bad stuff here and there it simply will not do the trick.
My leaky gut was the most my practitioner has ever seen (so she said) but I think a lot of it was due to 9 weeks of antibiotic. It might not be just gluten for me so will be interesting to see what it's like after 8-12 weeks from significant diet change. Definitely! My doc said my gut was "severely" leaking so healing that up I think has had this tremendous impact on being able to absorb MUCH MORE of the Thyroid meds!!
Did you ever have the coeliac blood test? My GP did it & said I wasn't coeliac. Yes I had the test and I am not Celiac but I understand NCGS (non celiac gluten sensitive) can be just as bad causing leaky gut and thyroid problems. The gastroenterologist said I wasn't gluten intolerant based on looking at my insides as you would see signs even if I had given up gluten for 6 months ??
I don't know about this but if you are very sensitive to other foods that could be as damaging.
Not really sure what to do next eg drop to 75mcg for 3 days per week & 100mcg 4 days? But endo said not to change anything yet despite my recent "good" thyroid tests. He wants to wait till end January.
If you aren't already keep a detailed daily log of everything - and if symptoms creek back in you know you have probably reached the "saturation" point again where your body just has too much T3/T4 in it.
Any thoughts? Why are you on cytomel? Last summer a doc added Cytomel to my Levothyroxine and that was when the most horrible unbearable symptoms started in August. A month later I found a doc who told me I had been overmedicated and that is when I started the journey of stepping down slowly on my Levo. Do you have recent results with TPO & T3?
I had results from Aug and my TSH was VERY low like .07 and my FT3 was out of range high - HORRIBLE overmedication!
Also do you supplement?
Yes but my blood shows good on all that stuff like B12, D, Ferritin, etc.
Thanks a lot & sorry for the questions but like you say I think we have lots of similar symptoms & situation.
Stay in touch and keep me posted how you are doing Polly! happy holidays!!
It’s interesting about our symptoms. Other ones I get are :
Low mood, subdued, bit emotional & inability to deal with stress well.
Burning in hands & feet & sometimes heat all over.
Hot feeling when eating a meal.
I feel the cold too.
Weight loss- 5kg in 5months
Inability to burp so I feel like I’ve got upper trapped wind. Not every day but several days/week.
Dryness everywhere(even anal - sorry ! but going to the toilet I can tell there’s a difference). I’m 52 & had an early menopause (45) but the dryness is different as it’s even painful having a shower so it’s a different level of dryness. No mucus whatsoever eg underwear looks clean. I’ve noticed this since July August which is when I was 90% gluten free but as I got stricter with diet it’s got worse so I’ve now started taking an estrogen pessary & it’s helped a lot.
Waking up at 2am then 4:30 am & struggling to sleep again.
Palpitations
Large stools in morning (sometimes 3 times before 8am!) sometimes yellow stools.
The head tightness has stopped & I haven’t changed anything so not sure why/how? But I’m not complaining.
I will try out the pulse pressure and let you know but I do know that my pulse is much higher than it used to be but then I’ve not exercised for 6mths either. So it could be that?
I do keep a symptom log but I’ve not changed my dose of Levo so cant link them to anything except blood tests.
My ferritin is high (within range but on high side which is not a good thing). Is yours ok?
My HbA1c (diabetic marker) is also high & has been fluctuating. Weird since I’m thin & now don’t eat any sugar or processed food except the odd packet of crisps (potato chips).
I am not very good at analyzing blood work or understanding the vitamin end of it, but it looks to me like your numbers show your less hypo by far! As you've repaired your gut you are absorbing more medicine that's why you're TSH has gone down so much. That is exactly what happened to me. I definitely have the dryness issue as well and I am not sure if it's from fixing the leaky gut or being over-medicated or both! but it has to be related to one of the other. I am hoping as I continue to get this under control the dryness will go away.
I have not been able to exercise for many months. And I have been extremely fit and strong all my life so this has brought me to my knees not being able to work out. When you are over medicated - thyrotoxicosis - One symptom is exercise intolerance and I have absolutely not been able to exercise.
I have kept close records on my pulse pressure and pulse pressure X pulse over the last few weeks If you Google you can see many many medical sites that show a high / wide pulse pressure indicates thyrotoxicosis. Mine has been very high but as I've reduced my Levothyroxine the pulse pressure is coming down. I finally just three days ago stopped taking the levo all together so I am medicine free. Fingers crossed my pulse pressure keeps coming down and I leave all the weird symptoms behind me. I have a doctor appointment Wednesday with a top integrative thyroid specialist in St Louis where I live and I'm going to get his opinion on all of this. All I know is the last medicine I take over the last six months the better I have felt. Perhaps we are healing our leaky gut and helping our condition improved and even go into remission!!
Wow medicine free would be wonderful Sunny. I hope you get to that point long term. That would be so impressive. So much for integrative medicine & “gut” feel/intuition. People say patients know best what’s right for their bodies and you seem to have proved that.
Will you get your zonulin leaky gut test done again? Or did you use a different marker ?
It will be interesting to see what your functional doctor thinks. Also does he/she look at ferritin as I hear that’s v important (& folate & B12). Not too low but also not too high. I saw a post about low ferritin just today being bad for ?osteoporosis??
What are your bones like? I know I’m a bit osteopenic so I’ve been taking vitD.
Will you ask about the dryness & if it’s linked to healing your gut or over medication?
I’m just wondering as your gut continues to heal so it’s no longer leaky could you become hyper even if no treatment? I wouldn’t have thought so ?
I’d be very interested to hear how you get on at your appointment- plse do keep me posted.
Good luck Sunny
Polly xx
I felt my symptoms come on rather suddenly 6 to 8 weeks after going gluten-free which is just about the amount of time it takes on average to somewhat heal leaky gut. My first symptoms were hot flashes, heart palps, dry mouth and fatigue kind of felt fluish without the flu and weakness particularly in my arms. My symptoms worsened as I increased meds until my blood test finally showed quite hyper in August and I have been stepping down on medicine since then.
Looks like changing your diet has really affected your blood test! That's great! It might be tricky figuring out that sweet spot now but it's worth it to heal your leaky gut!
I know this is an old post but it was good to read. I started GF and dairy free just 10 days ago and I feel like I need to constantly reduce my meds. Doc put me on 75 levo 10 lio but I’m now doing 50 levo only on day 1 and 20 lio only day 2 (so 100 less levo over 2 days). I can’t quite believe it will be this miraculous but let’s see! Thx for all info above from other commenters.
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