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Irishgirl76

Hashimoto's Testing While Gluten-Free?

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 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!  ;)

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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.

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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.

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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.

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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.

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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.

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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.

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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?

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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. :)

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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!

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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. :(

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(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.

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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. :)

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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?

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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

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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.

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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! 

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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?

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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

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    1. Toft M, Dietrichs E. Aggravated stuttering following subthalamic deep brain stimulation in Parkinson’s disease--two cases. BMC Neurol. 2011 Apr 8;11:44.
    2. Tani T, Sakai Y. Stuttering after right cerebellar infarction: a case study. J Fluency Disord. 2010 Jun;35(2):141-5. Epub 2010 Mar 15.
    3. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    4. Jäncke L, Hänggi J, Steinmetz H. Morphological brain differences between adult stutterers and non-stutterers. BMC Neurol. 2004 Dec 10;4(1):23.
    5. Kell CA, Neumann K, von Kriegstein K, Posenenske C, von Gudenberg AW, Euler H, Giraud AL. How the brain repairs stuttering. Brain. 2009 Oct;132(Pt 10):2747-60. Epub 2009 Aug 26.
    6. Galantucci S, Tartaglia MC, Wilson SM, Henry ML, Filippi M, Agosta F, Dronkers NF, Henry RG, Ogar JM, Miller BL, Gorno-Tempini ML. White matter damage in primary progressive aphasias: a diffusion tensor tractography study. Brain. 2011 Jun 11.
    7. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    8. [No authors listed] Case records of the Massachusetts General Hospital. Weekly clinicopathological exercises. Case 43-1988. A 52-year-old man with persistent watery diarrhea and aphasia. N Engl J Med. 1988 Oct 27;319(17):1139-48
    9. Molteni N, Bardella MT, Baldassarri AR, Bianchi PA. Celiac disease associated with epilepsy and intracranial calcifications: report of two patients. Am J Gastroenterol. 1988 Sep;83(9):992-4.
    10. http://ezinearticles.com/?Food-Allergy-and-Stuttering-Link&id=1235725 
    11. http://www.craig.copperleife.com/health/stuttering_allergies.htm 
    12. https://www.celiac.com/forums/topic/73362-any-help-is-appreciated/
    13. Ford RP. The gluten syndrome: a neurological disease. Med Hypotheses. 2009 Sep;73(3):438-40. Epub 2009 Apr 29.
    14. Hadjivassiliou M, Gibson A, Davies-Jones GA, Lobo AJ, Stephenson TJ, Milford-Ward A. Does cryptic gluten sensitivity play a part in neurological illness? Lancet. 1996 Feb 10;347(8998):369-71.

    Jefferson Adams
    Celiac.com 06/14/2018 - Refractory celiac disease type II (RCDII) is a rare complication of celiac disease that has high death rates. To diagnose RCDII, doctors identify a clonal population of phenotypically aberrant intraepithelial lymphocytes (IELs). 
    However, researchers really don’t have much data regarding the frequency and significance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. Such data could provide useful comparison information for patients with RCDII, among other things.
    To that end, a research team recently set out to try to get some information about the frequency and importance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. The research team included Shafinaz Hussein, Tatyana Gindin, Stephen M Lagana, Carolina Arguelles-Grande, Suneeta Krishnareddy, Bachir Alobeid, Suzanne K Lewis, Mahesh M Mansukhani, Peter H R Green, and Govind Bhagat.
    They are variously affiliated with the Department of Pathology and Cell Biology, and the Department of Medicine at the Celiac Disease Center, New York Presbyterian Hospital/Columbia University Medical Center, New York, USA. Their team analyzed results of TCR-GR analyses performed on SB biopsies at our institution over a 3-year period, which were obtained from eight active celiac disease, 172 celiac disease on gluten-free diet, 33 RCDI, and three RCDII patients and 14 patients without celiac disease. 
    Clonal TCR-GRs are not infrequent in cases lacking features of RCDII, while PCPs are frequent in all disease phases. TCR-GR results should be assessed in conjunction with immunophenotypic, histological and clinical findings for appropriate diagnosis and classification of RCD.
    The team divided the TCR-GR patterns into clonal, polyclonal and prominent clonal peaks (PCPs), and correlated these patterns with clinical and pathological features. In all, they detected clonal TCR-GR products in biopsies from 67% of patients with RCDII, 17% of patients with RCDI and 6% of patients with gluten-free diet. They found PCPs in all disease phases, but saw no significant difference in the TCR-GR patterns between the non-RCDII disease categories (p=0.39). 
    They also noted a higher frequency of surface CD3(−) IELs in cases with clonal TCR-GR, but the PCP pattern showed no associations with any clinical or pathological feature. 
    Repeat biopsy showed that the clonal or PCP pattern persisted for up to 2 years with no evidence of RCDII. The study indicates that better understanding of clonal T cell receptor gene rearrangements may help researchers improve refractory celiac diagnosis. 
    Source:
    Journal of Clinical Pathologyhttp://dx.doi.org/10.1136/jclinpath-2018-205023