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 Treatment
0

21 posts in this topic

For those of you who were diagnosed with Hashimoto's thyroiditis AFTER you had been gluten free for awhile: Did your Hashimoto's antibodies (TPOab test) increase over time even though you were gluten free and took thyroid supplements??

I was diagnosed with celiac disease in 2004 and immediately began abstaining from gluten. However, I had hypothyroid symptoms for many years (maybe 40) before I was finally diagnosed with Hashimoto's in 2010. So I had abstained from gluten for 6 years before my Hashi's dx. Nevertheless, I've needed more and more thyroid supplement to prevent hypothyroid symptoms (esp. constipation, fatigue and low body temperature). I don't easily convert T4 to T3 (verified by blood tests). So I take both T4 and T3 supplements. I initially need 5 mcg of T3 to prevent symptoms. Now I'm taking 30mcg of T3 (plus 50 mcg of T4) to stay 'normal' (regularity, temperature, energy).

Has anyone else had similar experience with needing higher T3 (and/or T4) dosage while abstaining from gluten? Did your Hashimoto's antibodies (verified by TPOab test) also rise during that time?

0

Share this post


Link to post
Share on other sites


Ads by Google:

We'll find out, though it will be muddled. Last TPO I had was when I was dx'ed with Hashis. They ran another one last week-2.5 months gluten-free and after being on thyroid meds for years.

In 6 months I will have it run again and we'll see if they've fallen and if I can reduce meds.

0

Share this post


Link to post
Share on other sites

We'll find out, though it will be muddled. Last TPO I had was when I was dx'ed with Hashis. They ran another one last week-2.5 months gluten-free and after being on thyroid meds for years.

In 6 months I will have it run again and we'll see if they've fallen and if I can reduce meds.

Being gluten free didn't decrease my need for thyroid supplements. I knew years of undiagnosed celiac could damage my thyroid enough that I'd need a 'maintenance' dose the rest of my life. However, after 2 months of thyroid supplements, I began taking low dose naltrexone to increase my white blood cell level (neutropenia). LDN also positively affects Hashimoto's thyroiditis. So I needed only a small amount of thyroid (10 mcg of T3, 25 mcg T4 daily) while taking LDN. 3 months after ending LDN treatment, I needed 25 mcg of T3 and 50mcg T4). Now I need even more. So I wonder whether my Hashi's antibody level increased when I stopped the LDN.

0

Share this post


Link to post
Share on other sites

Being gluten free didn't decrease my need for thyroid supplements. I knew years of undiagnosed celiac could damage my thyroid enough that I'd need a 'maintenance' dose the rest of my life. However, after 2 months of thyroid supplements, I began taking low dose naltrexone to increase my white blood cell level (neutropenia). LDN also positively affects Hashimoto's thyroiditis. So I needed only a small amount of thyroid (10 mcg of T3, 25 mcg T4 daily) while taking LDN. 3 months after ending LDN treatment, I needed 25 mcg of T3 and 50mcg T4). Now I need even more. So I wonder whether my Hashi's antibody level

increased when I stopped the LDN.

That's interesting. My ND told me I will probably always be on meds since I have ALREADY been on them so long...even if my antibodies drop. It may reduce, who knows. I'm at a high-normal dose now.

0

Share this post


Link to post
Share on other sites

Yes, yes, yes.

I had no Hashi's antibodies when I went gluten free in 2005, although I was hypothyroid with a history of elevated TSH and nodules. 2008 I had TPOab around 200. This year my TPOab was over 400 plus I had thyroglobulin Ab appear. I just had TSI done as well because my Dr. suspects Graves' on top of the Hashi's.

I have been on gradually increasing doses of thyroid hormone pretty much all my adult life but it's really jumped the past year. I also went from 125 mcg T4 to 137 T4 because TSH was >5, then we added 12.5 T3, then that went to 25 of T3. I'm back to feeling hypo yet again and have a Dr. appt Monday.

I'm going on MSM and glutathione cream to see if it helps the inflammation and autoimmunity. :unsure:

0

Share this post


Link to post
Share on other sites




That's interesting. My ND told me I will probably always be on meds since I have ALREADY been on them so long...even if my antibodies drop. It may reduce, who knows. I'm at a high-normal dose now.

Yup...that is pretty much how it is for many people. My antibodies went from 1200 in 2004 to "no antibodies detected" in 2011, yet I still take only

20 mcg less than I did before the Celiac diagnosis. I was diagnosed with Hashi's about 20 years ago and Celiac 6 years ago.

I think after so many years of assault, even if your antibodies come into the normal range, supplementation will remain. Your thyroid tends to slow down as we age anyway so that may account for some of it. I don't really mind because supplementation is not medicine...it's just hormone replacement. It's no different than taking birth control pills, except that with those, you are manipulating your hormone levels to prevent pregnancy. The trick is finding the right hormone which works well for you and keeping on top of it because dosage may have to be tweaked now and again.

0

Share this post


Link to post
Share on other sites

Yup...that is pretty much how it is for many people. My antibodies went from 1200 in 2004 to "no antibodies detected" in 2011, yet I still take only

20 mcg less than I did before the Celiac diagnosis. I was diagnosed with Hashi's about 20 years ago and Celiac 6 years ago.

I think after so many years of assault, even if your antibodies come into the normal range, supplementation will remain. Your thyroid tends to slow down as we age anyway so that may account for some of it. I don't really mind because supplementation is not medicine...it's just hormone replacement. It's no different than taking birth control pills, except that with those, you are manipulating your hormone levels to prevent pregnancy. The trick is finding the right hormone which works well for you and keeping on top of it because dosage may have to be tweaked now and again.

Thyroid problems run in my family (yeah, could be celiac/gluten intolerance runs in my family). A lot of females are on thyroid meds in our tree. I'm the only one dx'd so far with gluten issues. I'm also the youngest to go on thyroid meds - my aunt was dx'd with goiter and had half of hers removed about 30 years ago, now she's on low meds.

We're a thyroid mess.

0

Share this post


Link to post
Share on other sites

Thanks for all your comments. However, I just received my latest blood tests, which make me more confused than ever. My TSH was very low, but my free T4 was low normal and my free T3 was mid normal range. Furthermore my TPOab (Hashi's antibodies) were lower than my last test after completing 3 months of LDN. So I really don't know why I've had hypo symptoms and needed slightly higher doses of thyroid lately.

The only significant test result was my WBC (white blood count) which was lower than it was last April. It's still in the normal range, but near the low end of that range. That explains my recent chronic cold symptoms. (A year ago I had neutropenia or abnormally low neutrophils, before I took low dose naltrexone, which raised my WBC back to mid normal range.)

I intend to see my doc next week. I hope she can explain the 'big picture' for my thyroid test results. (She's very good at finding and treating 'causes' of symptoms, rather than just treating symptoms.)

0

Share this post


Link to post
Share on other sites

Are you hyper??? Hmm.

Have you tried different types of thyroid meds? Some people respond better to natural (Armour, etc), and some respond better to synthetics.

The other thing to wonder - are you getting glutened somehow? My gluten symptoms were Tge same as hypo symptoms - brain fog, tired, major c.

0

Share this post


Link to post
Share on other sites

Are you hyper??? Hmm.

Have you tried different types of thyroid meds? Some people respond better to natural (Armour, etc), and some respond better to synthetics.

The other thing to wonder - are you getting glutened somehow? My gluten symptoms were Tge same as hypo symptoms - brain fog, tired, major c.

My T3 supplement could be a little higher than necessary. However, my blood test showed my T3 level was mid normal. I'm rather limited by my food allergies to thyroid meds. Some contain lactose. Others contain cane sugar. I can't use Armour, because I need a different proportion of T3 to T4 than Armour provides. I don't easily convert T4 to T3. So I need 2 separate supplements.

No, I'm not getting any gluten. My usual reaction is intense gut pain, bloating and gas, which lasts at least 2 weeks. I have none of those. So I suspect my low TSH is caused by my higher T3 dose. We'll see what my doc advises. With lower T3, I get more fatigue, constipation and low body temperature. (I never got fatigue and low body temp with gluten consumption.)

0

Share this post


Link to post
Share on other sites

If changing ratios doesn't help, you may consider trying a different med combo. I know you are limited due to intolerances but some people respond better to one over the other.

http://thyroid.about.com/od/thyroiddrugstreatments/tp/Thyroid-Hormone-Replacement.htm

I used to respond to Armour, but didn't after the reformulation. I did better on Naturethroid. Then I went to thyroid usp (remember the supply issue a few years ago????). Now I'm back on synthetic t3/t4 because my t4 was low. It may all have to be reworked again after 6 months gluten-free.

Anyhow, you may want to try another combo if you can find one without lactose or cane sugar.

Perhaps you are needing supplementation - vitamins, minerals. It makes a huge difference for me. Almost as much as gluten-free or thyroid meds.

0

Share this post


Link to post
Share on other sites

If changing ratios doesn't help, you may consider trying a different med combo. I know you are limited due to intolerances but some people respond better to one over the other.

http://thyroid.about.com/od/thyroiddrugstreatments/tp/Thyroid-Hormone-Replacement.htm

I used to respond to Armour, but didn't after the reformulation. I did better on Naturethroid. Then I went to thyroid usp (remember the supply issue a few years ago????). Now I'm back on synthetic t3/t4 because my t4 was low. It may all have to be reworked again after 6 months gluten-free.

Anyhow, you may want to try another combo if you can find one without lactose or cane sugar.

Perhaps you are needing supplementation - vitamins, minerals. It makes a huge difference for me. Almost as much as gluten-free or thyroid meds.

Thanks for the suggestions. However, I already take loads of supplements, vitamins, minerals, probiotics, etc. I can easily reduce my T3, which should raise my TSH. I have the only T4 and T3 brands which don't contain my allergens. No other choices. Now that I have my blood test results, I'll see what my doc says.

0

Share this post


Link to post
Share on other sites

I saw my doc yesterday and wanted to share her reaction to my recent tests. She was not at all alarmed by my low TSH result, because my T4 and T3 results were normal. She also gave me some info supporting TSH-suppressive dosages of thyroid supplements. Rather than prescribe thyroid dosages that keep the TSH within a 'standard' range, my doc (and the studies she gave me) prefer to give the patient enough thyroid supplement to eliminate their hypothyroid symptoms. So she encouraged me to stay on the T3/T4 doses that keep me free of hypothyroid symptoms. She also noticed that my core body temperature was the highest I've ever had (although I was in a cold exam room when that was measured). My improved body temp, regularity and energy level suggest that my current thyroid supplement doses are exactly what I need, despite my TSH result.

I've read so many posts on this board and on a thyroid support group from patients who are taking thyroid and still have hypothyroid symptoms. So I wonder how many docs insist that patients can only use T4 therapy or that they must maintain their TSH level within a certain range no matter no they feel.

0

Share this post


Link to post
Share on other sites

I've read so many posts on this board and on a thyroid support group from patients who are taking thyroid and still have hypothyroid symptoms. So I wonder how many docs insist that patients can only use T4 therapy or that they must maintain their TSH level within a certain range no matter no they feel.

Thousands and thousands. There is an osteoporosis risk with over-suppression of TSH, but that has made doctors too conservative. Apparently people who were using thyroid for weight loss had spectacular osteoporosis and it really scared doctors. Even worse, the American Endocrinology Society promotes treatment with only T4 for almost everyone because of the steadier blood levels of hormone and some side effects of T3 treatment on heart. You have to fight tooth and nail to get onto T3 or natural thyroid, and to get enough to feel well. Maybe we are risking osteoporosis and heart disease, but I can't live my life hypothyroid to "save" my body for the future. That's insane!

I got good news yesterday too. My cholesterol has dropped 35 points since I started the 25 mcg of T3. Apparently my high-ish cholesterol was yet another symptom of hypothyroidsm and I needed some T3 to get down to normal cholesterol.

0

Share this post


Link to post
Share on other sites

My doctors have always gone by the "how you feel" approach - which was why they were my doctors.

I didn't waste time on the others.

0

Share this post


Link to post
Share on other sites

Thousands and thousands. There is an osteoporosis risk with over-suppression of TSH, but that has made doctors too conservative. Apparently people who were using thyroid for weight loss had spectacular osteoporosis and it really scared doctors. Even worse, the American Endocrinology Society promotes treatment with only T4 for almost everyone because of the steadier blood levels of hormone and some side effects of T3 treatment on heart. You have to fight tooth and nail to get onto T3 or natural thyroid, and to get enough to feel well. Maybe we are risking osteoporosis and heart disease, but I can't live my life hypothyroid to "save" my body for the future. That's insane!

I got good news yesterday too. My cholesterol has dropped 35 points since I started the 25 mcg of T3. Apparently my high-ish cholesterol was yet another symptom of hypothyroidsm and I needed some T3 to get down to normal cholesterol.

You should read what my doc gave me yesterday (written by Dr. John C. Lowe) about why docs ASSUME TSH-suppressant thyroid supplement doses cause osteoporosis and heart problems. The study on TSH-suppression and heart problems was done on elderly, bed-ridden patients (who were already heart challenged). There was no control study done on healthy heart patients to support the heart disease conclusion.

I would like to read that study about people using thyroid for weight loss and getting osteoporosis. So many irrational conclusions have been made from studies about thyroid treatment. Doctors tend to only read the 'headlines' of studies and not read all the information and make their own conclusions.

Fortunately I didn't have to fight my doc to get on T3. I merely asked her to do a free T3 test after I'd taken T4 supplement for months and still had hypo symptoms. My low free T3 results convinced her that I don't easily convert T3 to T4. I started at 5 mcg 2x daily. I now take between 25-30mcg daily to prevent hypo symptoms. However my 'doc' is a naturopath, not an endocrinologist. I've noticed that naturopaths tend to respect their patients' reported symptoms more than test results.

0

Share this post


Link to post
Share on other sites

You should read what my doc gave me yesterday (written by Dr. John C. Lowe) about why docs ASSUME TSH-suppressant thyroid supplement doses cause osteoporosis and heart problems. The study on TSH-suppression and heart problems was done on elderly, bed-ridden patients (who were already heart challenged). There was no control study done on healthy heart patients to support the heart disease conclusion.

I would like to read that study about people using thyroid for weight loss and getting osteoporosis. So many irrational conclusions have been made from studies about thyroid treatment. Doctors tend to only read the 'headlines' of studies and not read all the information and make their own conclusions.

Fortunately I didn't have to fight my doc to get on T3. I merely asked her to do a free T3 test after I'd taken T4 supplement for months and still had hypo symptoms. My low free T3 results convinced her that I don't easily convert T3 to T4. I started at 5 mcg 2x daily. I now take between 25-30mcg daily to prevent hypo symptoms. However my 'doc' is a naturopath, not an endocrinologist. I've noticed that naturopaths tend to respect their patients' reported symptoms more than test results.

Thank you for this information! I go to a functional medicine doctor for thyroid

treatment for the same reason. I go by my T3 and T4 levels, plus symptoms because if I go by my TSH alone, I end up anemic and pop with shingles. Endocrinologists who know what they are doing are few and far between.

Both my sisters have thyroid issues also BUT they see mainstream physicians who have refused to treat them for it because they "are not bad enough yet"! WTF?

I also have osteoporosis but assume it's because of my 25 years of undiagnosed Celiac and resultant malabsorption. I started weight training over a year ago and just went for my repeat bone density to see if things have improved. I cannot wait to get the results. I don't have any heart problems that I know of either and I have been supplementing like this for years.

This is all interesting stuff....

0

Share this post


Link to post
Share on other sites

Osteoporosis articles are all over PubMed. You shouldn't have any trouble finding a bunch to read. The most interesting recent discovery is that TSH may have a direct affect on osteoblasts. It's clear and reasonably reproducible that extreme suppression of TSH to below 0.3 or 0.1 (depends on the study) causes osteoporosis. I haven't read as much on T3 and heart disease.

What doctors forget is that hypothyroidism also causes osteoporosis.

0

Share this post


Link to post
Share on other sites

My endo will go by how I feel also. I never knew about T3 meds until she put me on them! I was there last month and told her of my worsening symptoms. She upped my T3 to 25 mcg from 10 mcg without seeing my labs. However about 1 1/2 weeks into the increase I started having tachy issues and palpatations. I called to have it lowered. I'm now going to take 1/2 so it will be 12.5 mcg. I also take 112 mcg of T4. I go back in Dec. and I will see if she will play around with my doses of my meds some more. Other than the tachy symptoms I really felt great so it really sucked having to decrease. However, other things can overstimulate my heart also like sudafed and caffeine. I do feel that I need more T3 but need an appropriate decrease in the T4 at the same time. I also think because my iron and ferritin have dropped since June that is contributing to the fatigue. It technically is not deficient "yet" and I don't want it to be. I've went back and eliminated some more things and will start on iron again for awhile. I hear the same thing about keeping my TSH suppressed will cause osteoporosis by my gyn doc. I told him that I felt the endo was the right person to trust with that issue and that was that!

0

Share this post


Link to post
Share on other sites

I had to divide my dose of T3 for a while or I noticed palpitations and a little tremor a couple hours after taking the pill. Like you, I dropped it to 12.5 but it wasn't enough. I found I could take the second half of the pill in the evening to get up to 25 mcg/day and avoid the side effects. The other thing you can do is look into having a compounding pharmacy make you a timed release T3.

I got a little more hypo lately and kept forgetting the evening dose but I've found I can tolerate the 25 mcg in the morning now. It's actually better to divide T3 because your blood levels are more stable, but only if you can remember to consistently take it at the same time twice a day.

0

Share this post


Link to post
Share on other sites

I had to divide my dose of T3 for a while or I noticed palpitations and a little tremor a couple hours after taking the pill. Like you, I dropped it to 12.5 but it wasn't enough. I found I could take the second half of the pill in the evening to get up to 25 mcg/day and avoid the side effects. The other thing you can do is look into having a compounding pharmacy make you a timed release T3.

I got a little more hypo lately and kept forgetting the evening dose but I've found I can tolerate the 25 mcg in the morning now. It's actually better to divide T3 because your blood levels are more stable, but only if you can remember to consistently take it at the same time twice a day.

I originally was to take 5 mcg of T3 twice a day for that very reason. However, I was having a hard time remembering to take the second dose, so it wasn't being any benefit to me. That is why I started just taking both pills in the morning before breakfast with the T4. I work night shift on average 3 days one week and 4 the next. I have found that on the mornings I need to sleep I take my meds after I wake up around 3pm. I don't want to take them and try to fall asleep in the morning. On my mornings I don't have to sleep/nights off I take the meds in the morning so I'm not taking them too close to bed time at night. This could be an issues, but I don't know how else to manage taking it right now with my shedule. I really believe I need more T3 than T4. Other than the tach, I felt great! I am going to start the 12.5 mcg tommorow and see how it goes. I may try to add the other 12.5 mcg at a later date and see how that goes if I can come up with times to take it with my wierd schedule.

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
      104,643
    • Total Posts
      921,569
  • Topics

  • Posts

    • Hey there! Welcome to the club you never wanted to be a part of. Boy, you are certainly throwing yourself one heck of a bang up pity party aren't you? PLEASE do not take that as a put down! I don't think there is a single solitary one of us who hasn't thrown ourselves at least 1 pity party. I know I've thrown at least 3. Oh, & crying meltdowns in the grocery store? Every one has been there, done that one too. It's all part of the process just like cyclinglady said. Ravenwoodglass is right on too about how it can mess with your head. Boy! Can it ever mess with your head! You really have been given excellent info. by all who have answered. I want to touch on something that hasn't been addressed yet but you mentioned it and that is kissing. You might call me an old lady as I'm just shy of 60 but I'm also a child of the 60's so remember that when you read what I'm going to tell you. BTW, I'm married to the same person, my only marriage, for 43 years. Anyone who cuts & runs because they have to brush their teeth before kissing you is not worth 2 minutes of your time and you are well rid of them! Be thankful that you have this "screening tool" because it will save you a lot of wasted time. If they won't even give you a chance when they hear about the precautions you have to take then they aren't worth a damn! Imagine someone like that standing by your side when times get tough. You can't can you? That's because they won't and you want a true partner who will support you and hang in there through the challenges we face in life & believe me, you will both face many life challenges.  Cooking. You don't have to be a gourmet. Cook simple. You know how to boil & scramble & fry eggs right? Only takes a couple minutes. Veggies? Aw heck, nuke 'em OR throw them on a baking pan spritz them with olive oil & spices of your choice & stick them in the oven. Smoothies are easy. Fresh fruit is well, fresh fruit - easy - peel it & eat it or just pop it in your mouth. Sweet potatoes can be nuked too & are wonderful for you. Salads are easy. Nut butters are a great source of protein. Karen had some great examples in her post too. Her "attitude adjustment" tips are great as well.  
    • Hi I'm still being tested. Got some blood drawn recently. My rheumatologist suspects celiac. I've been sick for a while with all sorts of symptoms. I've started a gluten free diet as my doctor told me try for 1-2 months to see if it helps. I've already had the blood drawn while I was eating gluten. My question is. Is it normal to have painful digestion and fishers when just recently quitong gluten? I've been gluten free only a mere two days. I know it takes time. But seems a bit worse? Is that normal?
    • I was only asking because when ferritin is low that you can experience hair loss/fatigue etc. even if your other iron levels are in range. This just happened to me so I thought I would share just in case it helps you. Ferritin should be above 50 to be optimal, not just "in range."  I've been on iron supplements and much better now. This may not be your problem at all, but I would have them check your ferritin levels. Low iron or anemia is common with celiac. The ferritin test is measuring how much iron is stored in your body. FYi: Iron binding capacity is really telling you how much protein your liver is making in order to carry that iron around. Usually, iron binding capacity will be higher in the range when iron is low. Edit: Also my blood pressure was low when my ferritin level got very low.
    • Hello I'm happy to join, any help is greatly appreciated as it can be difficult by times for sure. Unfortunately, I have been told my doctor has definitely not been doing anything correctly and very backwards about Alot of things. I live in canada, and there are celiac support groups I have found but I am about 2 hours away from any. I live in a pretty rural area. Although,  I have still received some help from them , they prefer a diagnosis before helping out to much. My doctor has me on a waiting list to see a gastrointestinal specialist but whenever I called her office to inquire about an appointment time I was told there was a very long wait and that I was considered to be a non emergency. So I am waiting to get an appointment. I have seen a dermatoligist for some of my rashes and she said it was dermatitis and gave me different creams for them.  It is frustrating because I don't know how to go about getting a actual diagnosis besides this biopsy. I was told to request a different specialist, but supposedly there is a waiting period for most in our area. 
    • Thanks for all of the replies. I've just found out I'm not getting to see a dietician because of not having a definite diagnosis which is another blow. I've had loads of bloods done but they just say they're all normal. I did have low vitamin D and high parathyroid but it's sorted itself out after a course of high dose vitamin D and they're not checking it again for a year. No chance of getting referred to endocrinology, gastro won't do it and neither will my gp. I've tried giving up coffee and all fizzy juice and it hasn't made a difference. I'm exhausted and scared and still have no clue what to do next. My gp has zero experience dealing with this type of thing - last time I was there she said it could be because I've restricted my diet too much and I should eat more gluten-free replacement products - everything I've read online says this is the worst thing to do! I'm asking for a copy of the last blood results this week so I can go through them myself but other than that I'm pretty stuck. 
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,648
    • Most Online
      3,093

    Newest Member
    Mileenabug
    Joined