Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Hashimoto's Testing While Gluten-Free?
0

44 posts in this topic

 Thanks.  :)  You are right. I should say that your TPO Ab should be very low and closer to a zero than the upper end of the range. It really is the bigger picture when it comes to thyroid testing isn't it... I guess it's the same with celiac.

 

My TPO Ab was only tested once and it was considered "normal" at 33.8 with a range of 0-34. I just assumed it was "normal" because my thyroid was pretty burned out after untreated hypo symptoms for 15 years. My TSH was my only abnormal test at the time (14something?) and my T's were considered normal too although they had almost bottomed out. 7 months later I'm on 112mcg of synthroid, and I'm still hypo with low T's and a TSH that is "within range" at about a 5. I don't think my thyroid works much since I'm getting close to full replacement amounts of T4 (synthroid) for my size.

 

I too hope that as i get my celiac undercontrol, I'll have less inflammation and maybe my TPO ab will come down further and the attack on my thyroid will stop before my thyroid is completely killed off.

You are never going to get your thyroid in good range taking Synthroid.  I am sure you have already heard that but just taking T4 is not helpful with Hashi's.  A TSH of 5 has me struggling to get out of bed in the morning.  I suppress my TSH to almost nothing and just go buy my T3/T4.  No wonder you still feel off!  So many doctors do not treat elevated antibodies and it's criminal.  Is there any way of getting a script for Nature-throid or something similar with T3 thrown in?

 

Going gluten free definitely helps but it does take a long while....at least for me it did.  It's been 8 years gluten-free and my TPO is still slowly going down into a lower normal range.  Either that, or my thyoid is caput and I don't know it!  ;)

0

Share this post


Link to post
Share on other sites


Ads by Google:

You are never going to get your thyroid in good range taking Synthroid.  I am sure you have already heard that but just taking T4 is not helpful with Hashi's.  A TSH of 5 has me struggling to get out of bed in the morning.  I suppress my TSH to almost nothing and just go buy my T3/T4.  No wonder you still feel off!  So many doctors do not treat elevated antibodies and it's criminal.  Is there any way of getting a script for Nature-throid or something similar with T3 thrown in?

 

Going gluten free definitely helps but it does take a long while....at least for me it did.  It's been 8 years gluten-free and my TPO is still slowly going down into a lower normal range.  Either that, or my thyoid is caput and I don't know it!  ;)

 

Thanks for the advice.  :)  I have an appointment in May with a doctor I know is willing to give Armour... or at least T3. When I asked my doctor about natural desicated thyroid he said that his "scientific mind could not allow him to prescribe that".  LOL He really said that to me.  I wanted to slap the man - I used to teach physics and I think I can handle a bit of science.  LOL :rolleyes:

 

I am still slowly upping my synthroid (until May anyways). My doctor doesn't agree with me but he knows I'm doing it. I''ll get labs in another week and I'll probably be upping it to 125mcg. I do have relief of some symptoms (hairloss has slowed, etc) but not enough to be satisfied yet.

0

Share this post


Link to post
Share on other sites

Thanks for the advice. :) I have an appointment in May with a doctor I know is willing to give Armour... or at least T3. When I asked my doctor about natural desicated thyroid he said that his "scientific mind could not allow him to prescribe that". LOL He really said that to me. I wanted to slap the man - I used to teach physics and I think I can handle a bit of science. LOL :rolleyes:

I am still slowly upping my synthroid (until May anyways). My doctor doesn't agree with me but he knows I'm doing it. I''ll get labs in another week and I'll probably be upping it to 125mcg. I do have relief of some symptoms (hairloss has slowed, etc) but not enough to be satisfied yet.

I haven't attempted to backtrack...but is your reverse t3 high?

I cut my meds in half without negative effect...my rt3 was high. I could have tripled my NatureThroid and had no change.

My doc says it proved at the moment my symptoms were not thyroid but adrenals (what I feel). I never feel up/down like some people talk about re:Hashis. She again says its because my adrenal symptoms are dominating.

I asked about rt3 blocking and she said it may be a factor, time would tell. I have improved by reducing thyroid meds and increasing adrenal support. Jury is out.

0

Share this post


Link to post
Share on other sites

I've had several tpo tests after going gluten-free. They are all over the place. Once almost normal, once out of the ballpark, once somewhere in between.

Levels vary. If you come up negative perhaps ask to be retested later to be sure. I've never tested "normal", but it may not be impossible. Someday :)?

 

This also depends on the time of day you get tested. From what my endo told me (she also has them antibodies, and never developed the disease, ie. she has always been symptomless for the past 25 years she has been positive), once they are high they tend to remain in the body, but their quantity will not be stable, so that, with the exception of dramatic drops/increases, changes in the range are only relatively indicative.

 

I will have new results coming in soon, and will see if there's a difference after a few months gluten-free.

0

Share this post


Link to post
Share on other sites

This also depends on the time of day you get tested. From what my endo told me (she also has them antibodies, and never developed the disease, ie. she has always been symptomless for the past 25 years she has been positive), once they are high they tend to remain in the body, but their quantity will not be stable, so that, with the exception of dramatic drops/increases, changes in the range are only relatively indicative.

I will have new results coming in soon, and will see if there's a difference after a few months gluten-free.

I always test fasting, first thing in the am, with a zillion other tests demanded by docs...and am well bled by various vampires.

Variance is variance. The number always varies.

I tested once during an AI flare (I'd been glutened, exhausted, allergies, headaches, had recently had the flu...). Sky high. Inflammation markers were also high.

Tested when I felt "ok", elevated about 20 pts above normal...

My first tpo when I was dx'ed with Hashis was 200+? Tsh was 5.6, my t3/t4 was slightly off....but lots of symptoms.

As I said, I've never tested "normal". On or off gluten.

0

Share this post


Link to post
Share on other sites




I haven't attempted to backtrack...but is your reverse t3 high?

I cut my meds in half without negative effect...my rt3 was high. I could have tripled my NatureThroid and had no change.

My doc says it proved at the moment my symptoms were not thyroid but adrenals (what I feel). I never feel up/down like some people talk about re:Hashis. She again says its because my adrenal symptoms are dominating.

I asked about rt3 blocking and she said it may be a factor, time would tell. I have improved by reducing thyroid meds and increasing adrenal support. Jury is out.

I have no idea if my rt3 is high. My doctor has never brought it up, and to be honest I doubt he knows about it.  He is very old school... I "doctor" his lab requests myself so my Free's get tested and not my Totals and he has never noticed!  LOL   :rolleyes:

 

I doubt my tr3 is high because my FT4 and FT3 are both staying low as I get treated. I wouldn't doubt my adrenals are having a rough go (after decades of untreated autoimmune diseases) and I was planning on requesting testing for it on my next visit. That would explain why my Free's are barely improving.

0

Share this post


Link to post
Share on other sites

I have no idea if my rt3 is high. My doctor has never brought it up, and to be honest I doubt he knows about it. He is very old school... I "doctor" his lab requests myself so my Free's get tested and not my Totals and he has never noticed! LOL :rolleyes:

I doubt my tr3 is high because my FT4 and FT3 are both staying low as I get treated. I wouldn't doubt my adrenals are having a rough go (after decades of untreated autoimmune diseases) and I was planning on requesting testing for it on my next visit. That would explain why my Free's are barely improving.

Again, haven't backtracked....

Your rt3 is more likely to be higher the longer you're on replacement therapy. That said, I have no studies etc. about that - just by reading about rt3 resistance and anecdotal statements . And that to reduce rt3 you stop t4 or lower it - taking only t3 or less t3/t4. And you get your vit d and iron up, and straighten out your adrenals.

It's kind of a mess?

Anyway, treating rt3 seems to be as controversial as the debate over synthroid v. natural or t4 v. Combo.

0

Share this post


Link to post
Share on other sites

Thanks for the advice.   :)  I have an appointment in May with a doctor I know is willing to give Armour... or at least T3. When I asked my doctor about natural desicated thyroid he said that his "scientific mind could not allow him to prescribe that".  LOL He really said that to me.  I wanted to slap the man - I used to teach physics and I think I can handle a bit of science.  LOL :rolleyes:

 

I am still slowly upping my synthroid (until May anyways). My doctor doesn't agree with me but he knows I'm doing it. I''ll get labs in another week and I'll probably be upping it to 125mcg. I do have relief of some symptoms (hairloss has slowed, etc) but not enough to be satisfied yet.

 

The doctor I had who first ran the thyroid testing on me after I asked for them to do so absolutely bristled when I told her I was not interested in taking Synthroid but would rather have a natural supplement.  "You would rather have dessicated thyroid from a PIG rather than have pure, clean hormone made in a lab"??????   :o   She insisted the dosing was not stable and I would run into problems.  She also only did the TSH and refused to do a full panel.  I found another doctor, pronto, before she did harm.  How do these people get a medical diploma?

0

Share this post


Link to post
Share on other sites

So I had my bloodwork done today. Not sure how long it takes to get results back but I would like to be prepared when they do come back. What if she tells me I do indeed have antibodies but my TSH is "normal" so I don't require treatment?

Also, I requested Free t3 and free t4 but what she wrote down was t3 and t4. Is this the same thing? I also asked for TSI (for Graves) but she didn't put that. I do suspect my symptoms are hypo rather than hyper but I seem to have symptoms of both.

Any thoughts welcome!

Thanks. :)

0

Share this post


Link to post
Share on other sites

So I had my bloodwork done today. Not sure how long it takes to get results back but I would like to be prepared when they do come back. What if she tells me I do indeed have antibodies but my TSH is "normal" so I don't require treatment?

Also, I requested Free t3 and free t4 but what she wrote down was t3 and t4. Is this the same thing? I also asked for TSI (for Graves) but she didn't put that. I do suspect my symptoms are hypo rather than hyper but I seem to have symptoms of both.

Any thoughts welcome!

Thanks. :)

If TSH is "normal" but you have antibodies along with hypo symptoms, I would push to try a low dose of treatment. Some doctors believe if you start on a low dose of T4 and T3 before too much damage is done to your thyroid, that the progression of the disease can be slowed... I don't think this is widely accepted or proven though.

 

In this situation, I think a trial of hormones would be called for, especially if your T's are low (bottom 50% of normal range).  You already know you don't feel well without them, and as long as the doctor doesn't start you on a ridiculously high dose, I don't know of any harm it can do.

 

And unfortunately no, T4 is usually tested as total T4, and T3 is usually tested as total T3. Some labs just do what ever the heck they want: my labs first did Free T4 with a T4 request, and then they switched to total T4... I started doctoring my lab requests by adding a F infront of the T4 so I would get the better test.  Free T's test the amount of the hormone available in the blood and is currently recognized as giving a more reliable picture of what is going on in your body. Total T's aren't quite as clear.

 

Good luck!  I hope you get some clear cut lab results!

0

Share this post


Link to post
Share on other sites

Thanks. :) To confuse matters, I also asked to be tested for pernicious anemia (symptoms are similar to hypo thyroid), but she only put B12 and CBC to check for that... Although from what I understand you have to look for antibodies (PA is another autoimmune condition). We'll see what comes back. The bloodwork I had done a year ago showed my B12 at 167 (normal range 198-615), and she failed to even mention it. That could also explain my crazy fatigue, heart palpitations, etc. I just want answers so I can start feeling well! I'm sure you all can relate. I'm a single mom to 3 small children and I don't feel like I am giving them my best because I am so darned tired and foggy. :(

0

Share this post


Link to post
Share on other sites

(hugs) to you, you busy mom.

 

With a B12 that low, are you supplementing with B12? A sublingual B12 would be best: methylcolbuman (spelling?) is a really good one. Take a couple a day. Eating quality meats helps too (as far as I know). PA is not uncommon amoung celiacs (as I'm sure you already know :) ).  I hope you find answers soon.

0

Share this post


Link to post
Share on other sites

I was negative for celiac, but tried the gluten-free diet anyway since October 2012. My new blood tests show that my aTPO was half as much as it used to be. Stil raised, but not as much. :)

0

Share this post


Link to post
Share on other sites

A few years ago I had a goiter in my right thyroid.  After I had a thyroidectomy (right side only),  I was diagnosed with hashimoto's.  I am wondering if, since the damaged/diseased part of my thyroid was removed, does that mean the hashimoto's is gone?  My thyroid has tested fine since then and I have not had to be put on thyroid meds.  My main concern in this question is that even though I am not exhausted ALL the time, my energy level is still not where I feel that it should be.  Is this the hashimoto's or something else?

0

Share this post


Link to post
Share on other sites

A few years ago I had a goiter in my right thyroid.  After I had a thyroidectomy (right side only),  I was diagnosed with hashimoto's.  I am wondering if, since the damaged/diseased part of my thyroid was removed, does that mean the hashimoto's is gone?  My thyroid has tested fine since then and I have not had to be put on thyroid meds.  My main concern in this question is that even though I am not exhausted ALL the time, my energy level is still not where I feel that it should be.  Is this the hashimoto's or something else?

Maybe you would get a more informed answer from the endocrinologist? He/ she could look at your records and tell you what really was going on and why they had your thyroid section removed

0

Share this post


Link to post
Share on other sites

Often when parts of you thyroid are missing a person will not produce enough hormones and will be hypothyroid. There are very very few people with hashi's who have it resolve.

1

Share this post


Link to post
Share on other sites

Often when parts of you thyroid are missing a person will not produce enough hormones and will be hypothyroid. There are very very few people with hashi's who have it resolve.

 

I was going to echo this. If your thyroid is removed (completely) the autoimmune disease, Hashimoto's, will be gone as there is no thyroid left for it to attack. However, the hypothyroidism will not resolve since your body has no thyroid gland to produce thyroid hormone. Usually, the small subset of people that are able to reverse their Hashi's - it is very early on during the disease when they are subclinical... and most of it is based on anecdotal evidence, such as radically changing diet/stress levels/exercise. Hope that answers your question! 

0

Share this post


Link to post
Share on other sites

I have seen it suggested but fail to  find any evidence to support the suggestion.that going gluten free will control hashimotos.

 

I have been STRICTLY gluten free for 3 1/2 years and my hashimotos still progresses.

 

The suggestion may come about  because so many celiacs ( an autoimmune disease )  also have hashimotos ( an autoimmune disease ) just as many of us also develop  diabetes (an autoimmune disease ) and other autoimmune diseases .

 

 

 ** on a side note ** I have found being grain free does help me manage my blood sugar levels.

Where do you get your information that many with one autoimmune disease will develop another?  Do you know what could prevent this, other than balancing the Th 1 and TH 2?

0

Share this post


Link to post
Share on other sites

Where do you get your information that many with one autoimmune disease will develop another?  Do you know what could prevent this, other than balancing the Th 1 and TH 2?

There are lots of references to this by reputable sites.

http://www.cureceliacdisease.org/archives/faq/what-other-autoimmune-disorders-are-typically-associated-with-those-who-have-celiac-disease

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,644
    • Total Posts
      921,583
  • Topics

  • Posts

    • The first two tests (at least in the US and most of the EU) have been replaced by the DGP tests (at the bottom) of GFinDC's list of celiac tests.  Not all celiacs test positive to the common Screening TTG.   The TTg is good and catches most and it was cheaper to run the best one (it is all about the money), but researchers realized they were not catching all celiacs.  Here is a link to the University of Chicago's celiac website.  When I was diagnosed three years ago, this site recommended just the TTg (as did the American GI Association).  Now they have expanded the list of celiac tests.   http://www.cureceliacdisease.org/screening/ Luckily, my GI must have just attended a GI conference and he ordered the complete panel for me.  ($400). It paid off.  Only my DGP IGA was positive and the rest of the blood panel (including the popular TTG test) was negative.  My biopsies revealed some severe intestinal damage.  My new health provider only allows PCP/GP doctors to only order the TTG.  So, if I want the follow-up testing to see if I have improved or had a gluten exposure, I must go to my New GI.  Yep, it is all about the money!   Keep eating gluten and make sure your  GI takes four to six samples during the endoscopy.  Maintain copies of all your results.   Your symptoms?  Yes, there are over 300 celiac disease symptoms.  celiac disease does not just affect the gut, but mis-informed and those who do not keep up with the latest in medical, do not seem to know that!   Do not give up!  
    • It's great to hear from you, Nightsky.  Glad to also hear of your steady progress.  Living gluten free is definitely a learning process, and even the baby steps are times to celebrate.  Wish you all the luck in the world as you continue to heal for the glutenization.  
    • Hi Nicky, When you first go gluten-free your symptoms often do change.  Feeling better or worse is possible.  The healing process is a major change in our gut and that means a big change in the gut flora is likely,  which can cause symptoms by itself.  Additionally the immune system doesn't stop making antibodies on a dime.  the immune system keeps working  to defeat the gluten invaders until it is darn good and ready to take a break. You really shouldn't start the gluten-free diet until all testing is completed.  That includes a full celiac disease panel and an endoscopy with biopsy samples.  It's much easier to complete testing while still a gluten eater than it is to stop gluten and go  back on it for testing later.
    • Hi Kircket, Welcome to the forum! Yes, he could be wrong.  Not everyone passes the blood tests.  And they are just one part of the diagnostic process anyway, although an important one.   Did you have the complete celiac antibodies panel? Anti-Gliadin (AGA) IgA
      Anti-Gliadin (AGA) IgG
      Anti-Endomysial (EMA) IgA
      Anti-Tissue Transglutaminase (tTG) IgA
      Deamidated Gliadin Peptide (DGP) IgA and IgG
      Total Serum IgA If you didn't have the full celiac disease antibodies test panel, I'd insist on getting it done.  There have been numerous people on the forum who tested positive on one antibody but not on others.
    • Three years ago I lost about 40kgs (Aussie lol) by better diet & exercise. All was going great til I stopped losing. I upped my exercise but bizarrely started gaining weight. One night a week of not being able to sleep soon became two, then virtually every night with either 1-2hrs tops or none at all. These weird symptoms started about two years ago, becoming worse in say, the last 9mnths. Then I started to get diarrhea. Occasionally then weirdly 2-3 days with multiple occurences then a day or two with nothing, then back to loose & offensive. My GP ran tests, including the TTga (hope that's  right) antibody blood test. Negative so he tells me that's not it. After 9mnths of this he shrugs and says, "I don't know what it is I've run out of ideas what ideas do you have?" Finally refers me to a gastrointerogist.  Private, of course and can't really afford it but we (my fiance and I) go. Stools and blood samples are ordered, basically bye, see you in a month. I have looked my symptoms up and they seem to point to Celiac. Today we went back. I have been having bloated stomach, sore back and limbs,  lovely burps, constant urination and crushing anxiety attacks folowed by depression (which I have never had before in my life). Admitted over the last weekend I didn't sleep for two and a half days and found myself hallucinating and crying to just be able to sleep. Mr fancy pants gastrointerogist says," Hey great news, the stools samples rule out parasites and Crohns!" I tell him how excrutiating the last month has been to which he replies, "It's not Celiac disease, (points at negative blood test results). Celiac doesnt present with diarrhea, anxiety and frquent urination all together." I also had a fecal occult blood test which showed positive & notes say are maybe due to a lower gi bleed, and a ct scan that says shows some damage which, in their words, could be due to a condition such as Celiac disease. He has booked me for a double scope as the next step, has a few ideas what it could be (won't tell me because he doesn't want me to be 'anxious'). Told me to consider that all these symptoms could be me just worrying and being anxious. Told him when this started I was not worried about anything, shrugged and said, It could stil have happened, hey, sometimes we never find out what causes it and your just stuck with diarrhea forever." Then as I was leaving he slapped me on the back and said, "Don't worry so much, see you soon." I need to have the scopes done but is it me or are the things I was told today not true?  I would honestly love it not to be Celiac disease but could he be wrong?
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,651
    • Most Online
      3,093

    Newest Member
    Kricket73
    Joined