I have Hashimoto's, am on 100mcg Levo, take all the recommended vitamins but still feeling fatigue and joint pain. I eat healthy diet and have been completely gluten free (not even oats) for over a year and this is the third time I've been gluten free for a considerable time. I'm not convinced the gluten free diet is helping - is there a way to tell in terms of blood test results? My antibodies always seem to be high whether the test is done in a gluten eating or gluten free period. I'm in a quandary as I don't want to ruin any good effects from being gluten free (can't tell if there are any) but I don't want to avoid gluten if I don't need to. Any advice?
Best way to trial reintroducing gluten? - Thyroid UK
Best way to trial reintroducing gluten?
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Farrugia
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I don't have Hashi's, but I have been consuming a strictly Gluten Free diet for about 3 years now. The Endo I see was keen I adopt this way of eating, as "folks with auto-immune conditions" tend to do well on it".
In fairness, I do feel better gluten-free than I did before, although I had no specific big warning signs or symptoms.
In your shoes, were I determined to add gluten back, I would do it somewhat gradually, as on the occasions I have messed up and inadvertently eaten gluten, I have known about it.
Here’s the reintroduction process used for the Autoimmune Paleo diet, an elimination diet tailored specify to those with autoimmune disease. I’ve taken this from the Phoenix Helix website, a wonderful resource for those with autoimmune disease:
“The first reintroduction step is a series of tiny bites which minimize the risk of intense reactions. Start with 1/2 teaspoon and wait 15 minutes. If you have no reaction, eat a full teaspoon, and wait another 15 minutes. If no reaction, eat 1-1/2 teaspoons. Then wait a few hours. If still no reaction, go ahead and eat a normal size portion of that food. Now, stop eating the food altogether, and watch your body for symptoms over the next 3 days. Reactions can happen anywhere from immediately, to a full 72 hours later. A reaction is an increase in your autoimmune disease symptoms. This might be pain, fatigue, difficulty sleeping, a skin rash, digestive distress, brain fog, moodiness, etc.
If you do have a negative reaction, you know you are intolerant and should avoid that food. Wait for the symptoms to pass before reintroducing another food, so you have a clear baseline for each reintroduction.
If you have no reaction, that food is potentially safe for you to eat. To confirm this, eat a little bit of this food every day for a week, and monitor your body again. Food intolerance seems to come in two forms. (1) A strong reaction, where there’s no doubt that your body reacts negatively to the food. (2) A cumulative inflammatory response that starts off so mild you can miss at first, but becomes noticeable after daily consumption. If after eating the food for a week, your body still feels good, then you know that food is not a problem, and you can introduce the next one.
Tip: as human beings, our bodies fluctuate from day to day; some days we feel a little better than others, and some days we feel a little worse. When you’re monitoring for a reaction, you’re looking for a clear response outside of the range of your normal fluctuations.”
Have you ever thought that you might be sensitive to something else? Many people with Hashimoto’s are sensitive to dairy products - I’m one, would never have suspected it but cutting it out then reintroducing made it very apparent! And there I’d been, eating so much yoghurt and kefir thinking I was doing myself good … removing all those lovely things was initially hard, but it’s made such a difference. Good luck with finding out what works for you 😊
Thanks for this. I find it hard to identify if something is triggering symptoms because they are so up and down anyway -I guess there's no easy answer. I have tried eliminating other things, including dairy before and it isn't obvious if something is triggering symptoms. I shall persevere.
Yes it’s hard isn’t it? Dairy was easy though as I reacted so strongly when reintroducing it but there are many other things like nuts and nightshades I’m not so sure about. In my case, part of the problem is that I’ve gone about it in quite a slapdash way … am trying to be a bit more scientific with how I go about it now … I thought Phoenix Helix’s guidelines were helpful.
SlowDragonAdministrator
Previous post shows you might be slightly under medicated
Have you had thyroid retested since these results
healthunlocked.com/thyroidu...
Ft3 likely too low in this last test
Most Hashimoto’s patients need Ft3 at least over 5-5.5
Likely to see worse conversion of Ft4 to Ft3 if restart on gluten
Yes - I think it's possible I'm not converting that well. The only test I've had since then was NHS on 23/4/21 so only TSH of course!
Serum TSH level 0.68 mu/L [0.35 - 4.94]
When I spoke to my GP after this about continuing fatigue and joint pain she said - your thyroid is fine. I said " TSH doesn't tell the whole story", she said " we'll have to disagree on that". She then said "there's nothing medically wrong with you, are you depressed or stressed?" I replied that I'm not depressed or stressed but that I'm unable to work because of energy levels and I don't get my pension for four years. She didn't offer any solution. I haven't rung back since because I'm so angry with them.
That's interesting about gluten affecting conversion - a good reason not to reintroduce! I might look back at results over a while to calculate whether conversion was worse when I'd been eating gluten.
I would get FULL thyroid and vitamin testing once year
Retest just TSH, Ft4 and Ft3 after any dose change or brand change in or any significant change (like stopping or starting gluten free diet)
Come back with new post once you get new results
Likely to need dose increase in levothyroxine or addition of T3 prescribed alongside levothyroxine
Yes, will do. Thanks
I don’t know if I have Hashimotos as my antibodies have never been checked ... however likewise fatigue joint, muscle aches along with high creatinine levels are predominantly my symptoms/problems.I have Coeliac disease so no option but serious elimination of gluten for me.
Could dairy be causing you any problems?
As far as I’m aware I’m not lactose intolerant, although they put me often on lactose free meds which I don’t think suit me.
I’m now starting to thinking it’s the brand of Levothyroxine I'm getting as I’m not like it always, but can seem like it as change brands frequently and now after having Aristo which I was slightly better on...they’ve issued this time Teva, I was dreadful last time from this one, I’m on day 2 but my review is next month so I’m asking to keep to one brand as with the new guideline advice.
So could something else be causing your inflammation spike.
Dairy maybe?
I have tried eliminating all sorts of things in the past including dairy and I haven't found any obvious difference. Good luck with the Teva, I know a lot of people struggle with that brand although I've always been ok on it, or at least as ok as on any other brand.
If you’re coeliac you’re hypothyroidism is almost certainly autoimmune
You should insist on always same brand levothyroxine at each prescription
Definitely my next step at my review. My annual blood check is due later this month whilst on Teva, then I’ll get a consultation week or two after.
I will not take my thyroid meds beforehand, but if lucky I might get T4 in this one not just TSH.
I’ve asked what’s being tested but receptionist couldn’t tell me 🙄
I have got authorisation and can at last see my results now, what little they look at.
I’ll probably have to go private for extras they don’t do.
Annoys the hell out of me, nurse blatantly told me as I’m supplementing they will not test those, as I asked Friday after my B12 jab... I could of got into a deep debate on that with her, as if that’s the case why bother looking at all of them after all.🙄
I absolutely see some logic to it, once improved and feeling well, but unless checked at some point how on earth do you know it’s working, and your own dna is blocking things, this one shoe fits all approach has to be stopped.
I just said I have a letter for my annual checks and what’s to be checked by my Gastroenterologist, if my surgery cannot fulfil this I’m to be referred back to him to do it.
He had put a very thorough list vitamins to be checked for my coeliac check ... I know my Vitamin D B12 to name a few have been left off before until I had them reinstated 🙄
I was told pointless testing antibodies for thyroid same drugs no matter what diagnosis.
Most GPs have little understanding in nutritional needs to help autoimmune conditions it’s all pharmaceutical and reliance of results not how patients feel 😞
Thanks for advice 😊
Yep….NHS testing virtually pointless
I haven’t bothered for 8 years
GP happy to accept copies of full private testing results at annual review
GP and endocrinologist, were astonished to see my TPO antibodies dropping at each private test after going strictly gluten free.
Went GF in 2016 after endoscopy confirmed severe gluten intolerance (not coeliac) despite zero gut issues…..20 years after initial diagnosis of autoimmune thyroid patients (Ord’s thyroiditis) - sky high TPO and TG antibodies remained throughout initial 20 years on levothyroxine.
Coeliac or gluten intolerance results in low vitamins and poor conversion Ft4 to Ft3, therefore likely to need T3 prescribed alongside levothyroxine
Dio2 gene test can be helpful to get T3 prescribed…..assuming you test positive
Email Thyroid UK for list of recommend thyroid specialist endocrinologists who will prescribe T3 ...NHS and Private
tukadmin@thyroiduk.org
Really helpful thanks.
That's interesting about the Dio2 gene test - I've had my DNA tested by Ancestry for genealogical purposes and sometimes you can transfer it to see health implications. I'm not sure if the Ancestry test shows up this gene, I will check it out.
My antibodies have not dropped since going gluten free, in fact they have gone up but maybe there's something else going on - like dairy.
You can get Ancestry DNA health evaluation here for approx £15
mthfr-genetics.co.uk/DNA/ab...
Like you I had already got Ancestry DNA test…..found it extremely informative - eg vitamin D, coeliac, hemochromatosis gene variations etc
But I don’t think it shows Dio2 gene ….
To get this test done ….via Regenerus
thyroiduk.org/deiodinase-2-...
You are obligated to get counselling too with this test
I might try the mthfr-genetics one first. I did the Prometheus interpretation of my Ancestry data but it didn't show much (apart from a mutation found in Japanese schoolgirls related to scoliosis - and I already know I have scoliosis). I will look into the Dio2 Regenerus one - I'm concerned though that even with this result (if positive) my GP would still refuse to budge from their position!
GP and most endocrinologist will either never have heard of Dio2, or even if heard of, will ignore it
But there are a minority who do understand it’s relevance
What a shame your GP is not interested in your opinion. When my TSH was about the same as yours, I still felt meh 😕 My GP let me have an increase. It was by 25mcg per day and that was too much. In the end the extra 25mcg x 4 days a week suited me best. Ultimately I needed a little T3 to really see a difference. Not perfect, but miles better.
Hi, I was was GF and dairy free for about 3m my atpo gone form 97 to 36, as well o was taking d3 + k2mk7. D3 2000iu + 100k2mk7. That depends on deficiency and weight. I'm not little person :). Then I did researches about iodine. Someone shere with me video on YouTube that I'm analizing: iodine conference lecture Stephanie Buist. Lots of good interesting info
