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Discussion Starter · #1 ·
Hi all,

After going gluten free some months ago (yes I was off the charts gluten sensitive) and developing hyper symptoms due to better absorption (rapid pulse, high pulse pressure, loose bowels, etc) I've "stepped down" from 120 mcg Levothyroxine to 50 mcg Levothyroxine. Oct 15 I dropped from 75 mcg to 50 mcg. Four weeks later on Nov 15 my TSH was 6.4 (as expected, a bit high as my body was adjusting to less meds). However, staying on 50 mcg my next blood test 2 weeks later showed TSH at 3.2 and then again two weeks later TSH is down to 2.1. Doc thinks I am absorbing Levothyroxine much better and I am going to step down again to 25 mcg. I continue to have the hyper symptoms (loose bowels, high pulse pressure, racing heart, sweating at night, weakness) on and off but mostly on. Also my antibodies prior to gluten free was 140 but since gluten free have been in normal range with quarterly checks. Also my only nodule has disappeared. Vitamins/nutrients all good and excellent health other than my thyroid.

Any thoughts/comments?
 

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I think that's a good sign quite frankly. I have heard some people have very good luck when going gluten free. And some even not having to have medicine.

Another possibility is, have you lost any weight or are you having low calories per day. I think that happened to me as I lost a lot of weight when I first went on Levo. I had changed my diet and I assume my metabolism started to work again. This may have caused some of the hyper symptoms I was having on 100 levo.

Sounds to me like you may just need to keep lowing the amount. Hyper symptoms are no fun! I suppose it's possible you wouldn't need any if this keeps trending.

I've also heard that sometimes people go back and forth between hypo and hyper with Hashimotos.I think I'm fairly steady and I believe a good amount of my thyroid is likely damaged. But maybe in your case it's not.

I will say 120 is a pretty high amount and going to 50 is a huge drop. But then you say you went from 75 to 50. Either way, seems like you may have found your root cause (gluten).
 

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Discussion Starter · #3 ·
Thank you so much for the reply! I thought it was a good sign too! I see the doc week after next and we'll figure out what to do next for sure.

I have lost a few pounds but not enough to matter - and honestly I think it is from being revved up/overmedicated.

Blood tests aside (we all know they don't always show how we feel)... I recently learned about this thing called "pulse pressure" - you can google and find info on major medical/hospital sites... anyway, pulse pressure is the top number minus the bottom number. If you're blood pressure is 120/80 the pulse pressure is 40. So, a high (also called wide) pulse pressure is considered over 50 (some sites say over 60) and that indicates hyperthyroid. I definitely fall into this category as my pulse pressure is usually around 50 to 55 - even after reducing down to 25mcg - so that tells me I am still hyper (and I feel it as well with rapid pulse, palpitations, exercise intolerant - all hyper symptoms).

Also found a few medical reports that explain why/how gluten damages intestines and that on average a Celiac or non celiac gluten sensitive person (like me) will reduce meds up to 50% maybe more due to better absorption.

I have truly suffered with symptoms since going gluten free because it took some months to figure out what was going on - and I still have bad days on and off as my body is trying to adjust to less and less med.

Again, so good to hear your thoughts. Thank you.
 

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It'd be nice if they could run FT4 and FT3 numbers on your next tests. Just to see how those are looking in comparison to your TSH. With so drastic of changes happening, I'm wondering if going on how you are feeling maybe more important though.
 

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Discussion Starter · #5 ·
I agree and yes next week I get a full panel to check other numbers. It has been a roller coaster as I've stepped down - some days I feel normal and others totally dreadful as my body as adjusting. I REALLY want to see what my numbers are with NO Levothyroxine and increase slightly from there as needed. I'd rather be hypo than hyper any day. Hyper has been absolutely horrible all the way around!
 

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TSH can lag up to 6 weeks - is completely not a viable test to have as many adjustments as you have had recently.

If you are still having symptoms - have a FT-4 and FT-3 run prior to changing any medication. You can order yourself a lab slip in many states. https://www.healthonelabs.com/tests_offer/buytest/220/ they charge $64.95 for TSH, FT-4 and FT-3

Sometimes when we go hyper - skipping a few doses of medication and giving it a few days to take effect is the best way to react to hyper symptoms.

You seem to be having continues hyper symptoms despite dose reduction. Testing TSH only is ridiculous - it's a pituitary hormone and while helpful in diagnosing thyroid dysfunction is not accurate nor immediate enough to use in dosing adjustments.
 

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I wouldn't take any thyroid replacment hormone if I felt speedy hyper....like you.....

It might have just been a one time spike in yor thyroid....caused by whatever.....

The gluten thing is just a coincident.

If you have true thyroid disease cutting out anything from your diet will do nothing at all for your symptoms.

"wish I didn't have to take this medication anymore"
 

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Are they testing anything other than TSH? What is your exact diagnosis?
 
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I wouldn't take any thyroid replacment hormone if I felt speedy hyper....like you.....

It might have just been a one time spike in yor thyroid....caused by whatever.....

The gluten thing is just a coincident.

If you have true thyroid disease cutting out anything from your diet will do nothing at all for your symptoms.

"wish I didn't have to take this medication anymore"
If the original poster was truly gluten sensitive by testing, it's possible that the gluten was a cause. I wouldn't rule it out for sure.

While I know this website is someone who makes a living off of this issue, it still should be considered: https://thyroidpharmacist.com/articles/gluten-root-cause-thyroid-condition/

From her post:

"As the gluten free diet is indicated for people with celiac disease, the diet was helpful for the study participants' intestinal symptoms and helped them recover the health of their intestines. There were also improvements in thyroid function! The study found that when most of those with subclinical hypothyroidism were placed on a gluten free diet, their thyroid function normalized! 71 percent of people who had subclinical hypothyroidism (a mildly underactive thyroid) and who had strictly followed a one-year gluten withdrawal (as confirmed by intestinal mucosa recovery) saw a return to normal thyroid function."

I know for me going gluten and dairy free has seemed to fix digestive issues I've had for multiple years. However, I cannot 100% confirm this was the fix as I was put on thyroid medicine and it's possible my thyroid working better had something to do with it. I personally think dairy was the culprit for me as I directly react to it. My whole family has sensitivity to dairy and my mother is very allergic to it. I used to have stools that would just stop half way (every darn time!). Which meant wiping and wiping. Now I'm having normal stools again. I've almost always been regular each day. I had one week of constipation when I wasn't feeling well (insomnia during that timeframe also). I was all over the place for a little bit.

Sorry to rant a bit. I still think there appears to be a gluten connection in many cases with Hashimotos patients. My sister has been trying it out lately (who used to have major dairy issues). She said going off the gluten seems to help her more than dairy now. But she has a hard time sticking to it.
 

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Discussion Starter · #12 ·
I was diagnosed with hypothyroid 5 years ago. Sept 2017 I found out my TPO antibodies were elevated so that means Hashimoto's.

Sep 2017 functional testing also showed severe gluten sensitivity - I DID NOT have any symptoms but doc said I should go gluten free so I did. Two months later the on and off hyper symptoms started (it takes average 2 months for gut to heal when going GF). That doctor should have told me to watch for symptoms of over medication due to better absorption but she didn't. My blood tests showed normal for about 9 months and then finally they started showing hyper. Horrible symptoms through this time. So by September 2018 (A YEAR LATER) I started reducing meds. I felt INSTANTLY better (like night/day difference) on the first reduction. I am today 18 days with zero meds. There have been ok days and bad days as I've been stepping down and my body has had to adjust (I was on 75 Levothyroxine and 20 Cytomel). But overall I am much, much better. I read it takes a long time to adjust if you have been over-medicated.

A very smart older doc told me this trick - before the days of blood tests docs used a simple pulse trick to figure out if a patient was overmedicated on thyroid meds. You take your blood pressure and subtract the bottom number from the top. So, example - 130 - 72 gives you 58. 58 is called the PULSE PRESSURE. You can google and find everywhere that a high pulse pressure (over 50) = hyperthyroidism or in my case over medicated.

So next you take your pulse pressure (58) x your pulse rate (72). 58 x 72 = 4176. If the resulting number is 3200 or over, he said they would have patients cut the meds in half. I am not a doctor simply repeating this. My number has ranged anywhere from 3500 - 7000 as I have been stepping down off meds (MUCH overmedicated) - but just this week after 18 days no meds I am finally seeing the number in the upper 2900s. Again, I am not a doc but this has showed me I was terribly overmedicated when bloods tests did not show it!

Here are a few medical reports that show going gluten free can results in a need to reduce thyroid meds.

unsuspected celiac disease severely affects levothy

Prevalence of coeliac disease in patients with thyroid autoimmunity.

atypical celiac disease as cause of increased need
 

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I think it's quite possible...especially if gluten is the root cause of your issue. Not everyone will benefit from it...but it's usually the first thing people try.

In my case, I'm guessing my thyroid is damaged enough I'll have to continue to take meds. However, I'm hoping to avoid further damage.

I do think things calmed down for me after changing my diet. But I was (and still am) adjusting my medication so it's not possible to know what improved what.

What I can say is I'm doing better so I'm going with my current efforts.
 

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If you have true thyroid disease cutting out anything from your diet will do nothing at all for your symptoms.
Changes in diet would impact absorption of thyroid hormone replacement.
 
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