Hashimoto's Testing While Gluten Free?

[cassP]

wondering if some of you that are experienced in this, could advise me->

i just got dx with Hypothyroid.. going for my 1st follow up in December. my question is: by then, i will have been 100% Gluten Free for almost 6 months- when i get a test for Hashimoto's antibodies- will it be inconclusive or false negative?? (because of being gluten free??)

(i am asking you because i know when i ask my PCP & Endocrinologist- they're gonna just look at me like im crazy)

thankyou

[burdee]

wondering if some of you that are experienced in this, could advise me->

i just got dx with Hypothyroid.. going for my 1st follow up in December. my question is: by then, i will have been 100% Gluten Free for almost 6 months- when i get a test for Hashimoto's antibodies- will it be inconclusive or false negative?? (because of being gluten free??)

I had that same question. So I requested a TPOab (thyroid peroxidase antibody) test along with my 2 month thyroid function tests. Because I've been gluten free for over 5 years, I didn't expect a significant amount of antibodies. I tested on Monday and am still receiving my results.

My TPOab results were 53 in a normal range of 0.0 to 60. My doc also ordered the thyroglobulin antibody test (TAb) which was <0.9 in a normal range of 0.0 to 4.0. Those results are essentially negative for thyroid (Hashimoto's) antibodies. You may still have some antibodies after only abstaining from gluten for 6 months. However I encourage you to request those tests to encourage you to stay gluten free and prevent further thyroid damage.

Lemmeno what your thyroid function results are after your followup test. My thyroid function tests reflected improvement after taking Levoxyl for 2 months. My TSH went down from 3.71 to 0.797. My free T4 went up slightly from 1.09 to 1.19, but the normal scale is only 0.9 to 1.8. My doc also checked my total T3 and free T3. Total was lower than the standard range (66 in a normal range of 70 to 170). I haven't yet received my free T3 result. So I don't know what the low total T3 means.

[georgie]

The Hashimotos Antibodies should decrease and go dormant once you are on the correct Thyroid medications. You know there are several different kinds... well some work better at this than others. The gluten-free diet also helps. But once you are dxed with Hashimotos - then the dx should still be there despite what the next test says.

[Skylark]

The Hashimotos Antibodies should decrease and go dormant once you are on the correct Thyroid medications. You know there are several different kinds... well some work better at this than others. The gluten-free diet also helps. But once you are dxed with Hashimotos - then the dx should still be there despite what the next test says.

This must not be true for everyone. My Hashimoto's antibodies came up after I was gluten-free for a few years, and while I was on a correct amount of thyroid medicine. What does go dormant on thyroxine is the inflammation and swelling.

Gluten-free diet status does not affect the Hashimoto's tests at all.

By the way, are you starting to feel better, Cass?

[cassP]

. My TSH went down from 3.71 to 0.797.

so WAIT- your TSH was 3.71, and your doc was progressive & openminded enough to know that that was too high???

now im pissed.

in 2006- my TSH was 4.65 (but within THEIR range- with 5.00 being the upper limit number).

in october this year- my TSH was 11.39 (this time their upper limit number is 4.5)

im a little worried- i want to feel better and i do not want to be stuck with a doc thinking that 4.5 is "OK"

anyways- it looks like you responded quickly to your meds- that's great

[cassP]

This must not be true for everyone. My Hashimoto's antibodies came up after I was gluten-free for a few years, and while I was on a correct amount of thyroid medicine. What does go dormant on thyroxine is the inflammation and swelling.

Gluten-free diet status does not affect the Hashimoto's tests at all.

By the way, are you starting to feel better, Cass?

thanks for asking Skylark

no, im not feeling better... somedays i feel worse

im a little worried- because my PCP wants to treat me- but i want to see an Endocrinologist who will get me on the RIGHT meds & doses.. my mom has Hashimoto's and has been on Synthroid since 1992.. and she's never felt any improvement. they've never put her on anything higher than 80 something!!! plus she still eats gluten (in her defense- she never knew the connection- and i didnt know the connection till i met all of you on this board)

i just cant wrap my brain around all the thyroid test numbers... t3... free t3 .. total, etc, etc, uptake... and now, one of the members on here (jason) is talking about REVERSE T3

Thankyou everyone for all your advice - it helps me a lot- i will definitely be asking to test for Hashimoto's at my next visit

[burdee]

so WAIT- your TSH was 3.71, and your doc was progressive & openminded enough to know that that was too high???

now im pissed.

in 2006- my TSH was 4.65 (but within THEIR range- with 5.00 being the upper limit number).

in october this year- my TSH was 11.39 (this time their upper limit number is 4.5)

im a little worried- i want to feel better and i do not want to be stuck with a doc thinking that 4.5 is "OK"

anyways- it looks like you responded quickly to your meds- that's great

In 2003 the American Academy of Endocrinologists recommended that all labs (and docs) change their 'normal' TSH range from a previous 0.5-5.0 to a more realistic 0.3-3.0. So results above 3 are considered hypothyroid by docs who have revised their 'normal' ranges. However, my HMO only lowered their 'normal range' by .5 (from 5.0 to 4.5). So my HMO PCP ignored my test results over the past 10 years as my TSH increased every year and I suffered all the classic hypothyroid symptoms.

I found a new naturopath after my old naturopath just kept testing me for gut bugs and prescribing treatments, rather than considering why I kept getting those infections. My new naturopath ordered blood tests and a Heidelberg capsule test (for stomach acid production) and found 4 reasons that I kept getting gastro infections (and frequent colds):

(1) hypochlorida (low stomach acid production) which allowed food-born bacteria to go straight to my intestines and proliferate (overgrowth);

(2) low Vitamin D level (Vitamin D is necessary to make the body's antimicrobial proteins which fight all kinds of infections);

(3) low white blood cells (probably depleted by 4 years of infections or B12 deficiency caused by long undiagnosed celiac disease);

(4) hypothyroidism (high TSH and low T4, which were considered 'normal' according to my HMO's outdated 'normal' reference range for both parameters).

If I would not have seen naturopaths who were not affiliated with my HMO, I might still be suffering celiac symptoms and be told I just have 'IBS' and suffering hypothyroid symptoms and be told I was cold and tired because I was underweight.

SUE

[cassP]

Ah ok Sue- if my docs cant help me in the future- i will look for a Naturopath.. cause this is IMPORTANT.

annoying

[Skylark]

thanks for asking Skylark

no, im not feeling better... somedays i feel worse

im a little worried- because my PCP wants to treat me- but i want to see an Endocrinologist who will get me on the RIGHT meds & doses.. my mom has Hashimoto's and has been on Synthroid since 1992.. and she's never felt any improvement. they've never put her on anything higher than 80 something!!! plus she still eats gluten (in her defense- she never knew the connection- and i didnt know the connection till i met all of you on this board)

i just cant wrap my brain around all the thyroid test numbers... t3... free t3 .. total, etc, etc, uptake... and now, one of the members on here (jason) is talking about REVERSE T3

Thankyou everyone for all your advice - it helps me a lot- i will definitely be asking to test for Hashimoto's at my next visit

Sorry to hear you're not feeling better yet. It can take a while. Usually it takes 6-8 weeks for a new dose of thyroid to stabilize, and if you go up too fast you can get heart palpitations, tremors, and other side effects. You may have to go through a couple rounds of dose increases.

Don't panic about a PCP treating you for thyroid. Thyroid disease is really common so it's one of the things doctors manage all the time. My PCP is treating me, and he was open-minded enough to put me on the little bit of T3 that has me feeling a lot better. Also, don't sweat the numbers too much. Make sure your TSH falls below 2.0 or lower and that any other tests are within the reference ranges. Also, Hashimoto's is not that big a deal. It's treated with the thyroid hormones you're already getting. Doctors watch people who are hypothyroid for nodules and benign tumors anyway.

Most of the stuff on the Internet about reverse T3 is bunk. Here are fact sheets from the Endocrine Society and the American Thyroid Association.

Open Original Shared Link

Open Original Shared Link

[cassP]

thanku skylark-

that's why im stressing- because i dont think my PCP is open to T3, nor open to getting my levels below 4.5

but i should think positive probably-

thankyou for all of your advice- it will help me so much to create the right journey with my doctors

[Skylark]

thanku skylark-

that's why im stressing- because i dont think my PCP is open to T3, nor open to getting my levels below 4.5

but i should think positive probably-

thankyou for all of your advice- it will help me so much to create the right journey with my doctors

Most people don't need T3. I didn't for 20 years and I'm only taking a small amount now. If your PCP won't push your TSH below 2.0 and you still feel ill, you should ask for an endocrinologist referral. Just remember that thyroxine takes about six weeks to work, so be patient right now.

[Gemini]

wondering if some of you that are experienced in this, could advise me->

i just got dx with Hypothyroid.. going for my 1st follow up in December. my question is: by then, i will have been 100% Gluten Free for almost 6 months- when i get a test for Hashimoto's antibodies- will it be inconclusive or false negative?? (because of being gluten free??)

(i am asking you because i know when i ask my PCP & Endocrinologist- they're gonna just look at me like im crazy)

thankyou

The gluten free diet will not impact testing for thyroid antibodies....it's not the same as testing for Celiac, where the gluten-free diet will affect testing. However, if you are being treated with the correct dosage of thyroid hormone (this may mean suppressing your TSH to accomplish)and you follow a strict gluten-free diet, it should bring your antibody levels down into the normal range.

My thyroid antibodies were 1200, when the normal range was under 40. It took almost 5 years gluten-free before I got that number down into the normal range. Using the correct dosage is not enough...you need to be strictly gluten free also, to avoid all the inflammation which will affect your thyroid. It can be done but it takes time and the right doctor, because I have found in my experience that endocrinologists are the worst people to go to for a thyroid problem. I go to a holistic/naturopathic doctor myself and that's when things got better. Even my PCP, who is a pretty good doctor, looked at me like I was loopy when I mentioned suppressing the TSH to bring my antibodies down. They just have no clue....

[avivai]

 i was diagnosed with hashimotos more than 10 years ago, but i was only informed about the connection between gluten and hashimotos last october. i am being treated privately by a doctor who specializes in bio-identical women's hormones. he told me that i have to cut out gluten after i told him i have hashimotos. the doctor at the health clinic was skeptical. so we agreed to do a test. i had anti-TPO and thyroglubulin Ab taken before i started on a gluten free diet. the Anti-TPO was 178 IU/mL (where normal values are <35 IU/mL) and the Thyroglobulin Ab was <20 IU/mL (where normal values are < 40 IU/mL).

after a good two months on a gluten free diet, my Anti-TPO was 115 IU/mL and my Thyroglobulin Ab was the same.

can anyone tell me if this is a significant improvement? and can i expect a continued lowering of the Anti-TPO level?

[Gemini]

avivai.......yes, Hashi's is very closely connected to Celiac Disease, as is Type 1 diabetes.  I have Hashi's and was diagnosed with that about 15 years before the Celiac diagnosis. After 8 years gluten-free, my antibodies have gone back to normal and my TPO count was 1200, where normal was anything under 40.  I think what helps are a couple of things......going gluten free calms down the inflammation from the systemic problem of Celiac and this in turn calms down the attack on other organs. Also, if you are taking thyroid hormone (supplemental), you would now be absorbing your meds correctly, once your gut has healed.

 

Tell me...why did they not do a Celiac panel on you?  Were you actually tested for Celiac at all?  I think for many, going gluten free if they do indeed have a gluten problem, is going to improve thyroid function.  There are those who noticed no difference at all, with regards to their TPO.  I think it depends on many factors but you have noticed a difference, which is excellent.  Actually, it's pretty damn fast that the reduction took place and yes, I think you may be surprised to find that your TPO continues to go down as time passes.  It may take quite awhile for some and not so long for others but I think this is a good sign.  Both of my thyroid antibodies are normal now and I take 20 mcg. less dosage than I did before I was gluten-free.  This took 8 years though as I may be older than you.  One more question...was the testing done by the same lab?

[avivai]

avivai.......yes, Hashi's is very closely connected to Celiac Disease, as is Type 1 diabetes.  I have Hashi's and was diagnosed with that about 15 years before the Celiac diagnosis. After 8 years gluten-free, my antibodies have gone back to normal and my TPO count was 1200, where normal was anything under 40.  I think what helps are a couple of things......going gluten free calms down the inflammation from the systemic problem of Celiac and this in turn calms down the attack on other organs. Also, if you are taking thyroid hormone (supplemental), you would now be absorbing your meds correctly, once your gut has healed.

 

Tell me...why did they not do a Celiac panel on you?  Were you actually tested for Celiac at all?  I think for many, going gluten free if they do indeed have a gluten problem, is going to improve thyroid function.  There are those who noticed no difference at all, with regards to their TPO.  I think it depends on many factors but you have noticed a difference, which is excellent.  Actually, it's pretty damn fast that the reduction took place and yes, I think you may be surprised to find that your TPO continues to go down as time passes.  It may take quite awhile for some and not so long for others but I think this is a good sign.  Both of my thyroid antibodies are normal now and I take 20 mcg. less dosage than I did before I was gluten-free.  This took 8 years though as I may be older than you.  One more question...was the testing done by the same lab?

hi gemini....thanks for responding. i'm glad to hear that the reduction in antibodies IS significant. so i now know i'm on the right path and not just driving myself crazy trying to be gluten free. yea, i do take thyroid supplement for, oh, i don't remember how many years since i had my TSH tested among other things and it was thru the roof. i've been taking 1 100mcg tablet of eltroxin a day, 6 days a week for quite some time and the T3,T4 levels have been stable. it was at least a couple of years, if not 3 or 4 years after i started on eltroxin that one of the doctors thought to test me for anti bodies and when the results came back, informed me that i have hashimotos. but this did not lead to any change in treatment at that time. it's only because i went to this doctor privately for other problems that i was notified about the implications of gluten in my diet. even when i told the clinic doctor, as i said before, he was skeptical.

i guess i never got tested for celiac because i don't have any clinical  symptoms. if i ingest gluten, i don't feel any physical results to let me know that i've stepped off the straight and narrow. besides going gluten free, my dr. also told me to stay away from dairy and all sugar, even fruits. sigh....not easy. but i am trying!

[avivai]

i am very happy to report that my latest lab results show further improvement. my latest lab results show the Anti-TPO down to 108 IU/mL. the blood was taken Dec. 24. the previous result (taken July 22) was 115 IU/mL, as noted above. not as dramatic a decrease as previously, but still, going in the right direction.

[pricklypear1971]

That's great news!

I do want to add, that for many, tpo antibody levels are not related to a gluten-free diet.

Thyroid is complicated and nuanced. My tpo bounces all over the place after 2 1/2 years gluten-free. What it is indicative of is how much your hashis is flaring at the moment. If you are fortunate to respond to your treatment, the antibodies should be low. If you don't....well, they'll be high.

One reason going gluten-free and healing your gut helps is because not only do you absorb your meds, but your nutrients. Iron and d and other nutrients/minerals/vitamins must be high enough for you to utilize the meds.

It sounds like things are going well for you and that's great news!

[cyclinglady]

Besides having Hashi's, my only symptom was anemia. I did not have digestive issues. I have been gluten-free for 9 months and my next physical is scheduled this month. My thyroid antibodies were over 2000 (yes, that is right!) and I am curious to see I'd they have come down dramatically. So, do not dismiss celiac disease yet!

[avivai]

That's great news!

I do want to add, that for many, tpo antibody levels are not related to a gluten-free diet.

Thyroid is complicated and nuanced. My tpo bounces all over the place after 2 1/2 years gluten-free. What it is indicative of is how much your hashis is flaring at the moment. If you are fortunate to respond to your treatment, the antibodies should be low. If you don't....well, they'll be high.

One reason going gluten-free and healing your gut helps is because not only do you absorb your meds, but your nutrients. Iron and d and other nutrients/minerals/vitamins must be high enough for you to utilize the meds.

It sounds like things are going well for you and that's great news!

hmmmm, now you've got me confused. i understood from my doctor that there is a DIRECT correlation between my gluten intake and my antibody level. he told me that if i go gluten-free it will take about a month for the gluten to flush out of my system. and that if i stay gluten free, the anti-bodies that are attacking my thyroid will...well, i don't recall if he said they will reduce to zero or just reduce, but definitely one of those. i have to check back with him about the details of what he told me.

soooo, you're saying this is not quite accurate? the only related medication i take is Eltroxin, as i have since i was first diagnosed with hypothyroidism.

thanks for sharing the info with me. i've still got alot to learn....

[pricklypear1971]

hmmmm, now you've got me confused. i understood from my doctor that there is a DIRECT correlation between my gluten intake and my antibody level. he told me that if i go gluten-free it will take about a month for the gluten to flush out of my system. and that if i stay gluten free, the anti-bodies that are attacking my thyroid will...well, i don't recall if he said they will reduce to zero or just reduce, but definitely one of those. i have to check back with him about the details of what he told me.

soooo, you're saying this is not quite accurate? the only related medication i take is Eltroxin, as i have since i was first diagnosed with hypothyroidism.

thanks for sharing the info with me. i've still got alot to learn....

I heard this, too. Though it was *should*, not would....and it didn't.

Bottom line is this....if your thyroid is undertreated and thyroid disease is raging, and significant damage has been done then your antibodies will probably be up because of your thyroid.

If your thyroid was well treated, and disease was early going gluten-free will be more likely to lower antibodies - if your thyroid was angry simply because gluten was irritating it.

What you're about to find out is if your thyroid is/was well controlled by meds. And, if you have thyroid resistance, etc.

And I would think a month is a bit optimistic....it takes some people a year for thyroid antibodies to fall into normal range. I'd assume thyroid antibodies will fall at the same rate as gluten, if gluten is the cause.

[nvsmom]

I'm another whose TPO Ab levels don't seem to have a strong correlation to being gluten-free. Before going gluten-free my TPO Ab was 33 something with a range that goes from 0-34; my TSH was in the teens and my free T3 was in the bottom of the normal range. After being gluten-free for a year, my TPO Ab was somewhere around a 24 I think.  Because my TPO Ab was not above range, I was not given an official Hashimoto's diagnosis; I do have a lumpy and bumpy thyroid that is typically seen in those with Hashi's but I suppose my thyroiditis could have been caused by something else.

 

I am now on a full replacement dose of natural desiccated thyroid. Even though, according to my labs, it appears my thyroid was NOT being attacked, my thyroid barely functions. I have not reduced thyroid meds since going gluten-free, but I started on them around the same time I went gluten-free so it's hard to say if going gluten-free helped at all.

[Gemini]

hmmmm, now you've got me confused. i understood from my doctor that there is a DIRECT correlation between my gluten intake and my antibody level. he told me that if i go gluten-free it will take about a month for the gluten to flush out of my system. and that if i stay gluten free, the anti-bodies that are attacking my thyroid will...well, i don't recall if he said they will reduce to zero or just reduce, but definitely one of those. i have to check back with him about the details of what he told me.

soooo, you're saying this is not quite accurate? the only related medication i take is Eltroxin, as i have since i was first diagnosed with hypothyroidism.

thanks for sharing the info with me. i've still got alot to learn....

avivai.......it all depends on the person but from my experience with both Celiac and Hashi's, it does make a difference with antibody levels after being gluten-free for awhile....especially the TPO.  Going gluten-free calms down all that inflammation, which in turn will stop or downgrade the autoimmune attack on your thyroid.

 

I have had thyroid disease for well over 20 years and was diagnosed with Celiac 9 years ago this April.  My TPO was 1200 at the time of my Celiac diagnosis and I could not get control of my thyroid function.  I was up to 150mcg per day of thyroid hormone. Fast forward almost 9 years and my TPO is now under 40, which is the normal range for the lab I use.  It was actually 32.  I should stress that it took 8 years for this to happen but I do not give up easily.  I now take a dose of 113mcg one day and 130 the next day....alternating between the two.  I am in the process of tweaking my dose to try and lower it more and this is the next step in that tweak period.    So, my experience is that, over time, you can have a lower TPO with the help of the gluten-free diet but I also take a T3/T4 combo, which is a more active form of thyroid hormone.  In fact, I have read medical journals that state the position that even if you do not have Celiac but have Hashi's thyroid disease, the gluten-free diet is beneficial for driving down inflammation in the body.  Not sure how true that is because if you do not have Celiac, there should be no inflammation but who knows?  The gluten-free diet is easy enough to follow, after the learning curve is mastered, so I would give anything, within reason, a try.

 

Good luck to you!

[avivai]

well, it's just over 3 years since i posted here, but i thought i'd just take time to post an update on my progress. at last report here, my   Anti-TPO level was down to 108 IU/ml (dec. 2013). since then, in February 2015 the level was down to 58.4 IU/ml.  Finally, the test from December 2015 showed the level down to 46.4 IU/ml. not only that, but the TSH level was so low (0.30mIU/L) that my doctor called in a panic that I must immediately LOWER my dose of Eltroxin (from 100 mcg 6 times/week to 5 times/week) and get tested again in six weeks to see if the amount she told me to lower it to is low enough. since then i have been on the lower Eltroxin dose and my TSH has remained in normal range. i really think the gluten free diet works for me. 

[cyclinglady]

9 hours ago, avivai said:

well, it's just over 3 years since i posted here, but i thought i'd just take time to post an update on my progress. at last report here, my   Anti-TPO level was down to 108 IU/ml (dec. 2013). since then, in February 2015 the level was down to 58.4 IU/ml.  Finally, the test from December 2015 showed the level down to 46.4 IU/ml. not only that, but the TSH level was so low (0.30mIU/L) that my doctor called in a panic that I must immediately LOWER my dose of Eltroxin (from 100 mcg 6 times/week to 5 times/week) and get tested again in six weeks to see if the amount she told me to lower it to is low enough. since then i have been on the lower Eltroxin dose and my TSH has remained in normal range. i really think the gluten free diet works for me. 

 

Thanks for the update.  I have not had my TPO antibodies checked in years, but I can report that my thyroid is no longer enlarged, I no longer have nodules, and it has been stable.  By treating my celiac disease, I have in turn,  treated my thyroid -- at least that is my theory!  ?

[avivai]

9 hours ago, cyclinglady said:

Thanks for the update.  I have not had my TPO antibodies checked in years, but I can report that my thyroid is no longer enlarged, I no longer have nodules, and it has been stable.  By treating my celiac disease, I have in turn,  treated my thyroid -- at least that is my theory!  ?

i'm glad your thyroid is better. i never had an enlarged thyroid nor nodules. but i do believe the gluten free diet is good for the thryroid if you have Hashimoto's. i always ask to have my TPO included in my annual blood test when i check my thyroid levels, so that i have an idea where i'm holding. best of luck to you!