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Synthroid


wowzer

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wowzer Community Regular

When I saw the post that Synthroid may no longer be gluten free, I wondered if I am getting glutened from it. I started this prescription bottle Dec. 1. I know with all the holidays and so forth that I may have got glutened that way. I just feel like I'm going back to 3 years ago. It took me almost a year to figure it out. Of course my glutening symptoms hit the mucous tissues, so not fun. They aren't as bad but so aggravating. When I talked to Abbott today, they told me how they send out surveys to check with their suppliers if they use gluten. Because they are taking their word that there is no gluten, they aren't saying that synthroid is or isn't gluten free. That isn't so reassuring to me. I also called my pharmacist and she told me that Abbott told her that they are making synthroid the same way they always have. I'm not sure what to make of this. I just want to know is it gluten free or not. Abbott did admit they were flooded with calls today although I didn't wait too long. Just wonder what do you think about this?

Wendy


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disneyfan Apprentice
When I saw the post that Synthroid may no longer be gluten free, I wondered if I am getting glutened from it. I started this prescription bottle Dec. 1. I know with all the holidays and so forth that I may have got glutened that way. I just feel like I'm going back to 3 years ago. It took me almost a year to figure it out. Of course my glutening symptoms hit the mucous tissues, so not fun. They aren't as bad but so aggravating. When I talked to Abbott today, they told me how they send out surveys to check with their suppliers if they use gluten. Because they are taking their word that there is no gluten, they aren't saying that synthroid is or isn't gluten free. That isn't so reassuring to me. I also called my pharmacist and she told me that Abbott told her that they are making synthroid the same way they always have. I'm not sure what to make of this. I just want to know is it gluten free or not. Abbott did admit they were flooded with calls today although I didn't wait too long. Just wonder what do you think about this?

Wendy

I just read your post after reading others on this site and online. I am very concerned about this so I just called Abbott Labs also. The gentleman I spoke to was very helpful. He said they have had MANY calls regarding whether synthroid is gluten free or not. According to him, Abbott has never claimed their synthroid was gluten free. They DO NOT evaluate their product for gluten. They receive information from the supplier that indicates there is no wheat, barley, oats, rye, malt or spelt in the synthroid but it is not evaluated for gluten. There is no way of knowing if any of those listed contain any gluten. He was not able to refer to any other manufacturers of synthroid as each could be different.

This is very scary. I looked at the ingredients listed on their website and it does list corn starch. I know for a fact I cannot digest corn.

I am going to ask my doctor about this because for the last several months I have been on this prescription, I have felt like something was not right and I couldn't figure out what it was. Could it be my synthroid?? I will be very upset if it is because I have been gluten free for about two years and was really making some progress. Lately, I have had a few unexplained reactions that I cannot pinpoint to anything specific.

What do we do?? I googled Levoxyl and it had the name "levothyroxine sodium" right under it. The only thing he said was that it may have different ingredients or a different manufacturer may specifically test for gluten.

ANY SUGGESTIONS???

Gemini Experienced
I just read your post after reading others on this site and online. I am very concerned about this so I just called Abbott Labs also. The gentleman I spoke to was very helpful. He said they have had MANY calls regarding whether synthroid is gluten free or not. According to him, Abbott has never claimed their synthroid was gluten free. They DO NOT evaluate their product for gluten. They receive information from the supplier that indicates there is no wheat, barley, oats, rye, malt or spelt in the synthroid but it is not evaluated for gluten. There is no way of knowing if any of those listed contain any gluten. He was not able to refer to any other manufacturers of synthroid as each could be different.

This is very scary. I looked at the ingredients listed on their website and it does list corn starch. I know for a fact I cannot digest corn.

I am going to ask my doctor about this because for the last several months I have been on this prescription, I have felt like something was not right and I couldn't figure out what it was. Could it be my synthroid?? I will be very upset if it is because I have been gluten free for about two years and was really making some progress. Lately, I have had a few unexplained reactions that I cannot pinpoint to anything specific.

What do we do?? I googled Levoxyl and it had the name "levothyroxine sodium" right under it. The only thing he said was that it may have different ingredients or a different manufacturer may specifically test for gluten.

ANY SUGGESTIONS???

I was the one who posted about Synthroid not being able to guarantee gluten-free status. I got my information from glutenfreedrugs.com, as this is the site that I use to check for gluten-free status in meds. I personally use Levoxyl myself, which is the generic form of Synthroid. It works beautifully for me and costs very little....about $20.00 for a 2 month supply through my insurance. Even if you bought it out of pocket, it is much, much cheaper than Synthroid.....which is the same med.

I called to verify that Levoxyl is gluten-free and it is. I would suggest switching meds and maybe if they lose enough business, they will start testing for gluten-free status. I doubt if you take Synthroid you will have any problems with Levoxyl, although I have no idea if it contains corn.

Annoying, isn't it? Seeing as how many people with celiac disease also have low thyroid, you'd think they would smarten up about the gluten thing!

wowzer Community Regular

Gemini, Thanks so much for bringing up the information about the synthroid. I have been taking it for over 20 years. I was told that once you take the name brand, they don't want you to take anything else. I am glad to know that the generic is gluten free. I did talk to the pharmacist about it and she said that it could be done but have never talked about it with my doctor. I will now.

disneyfan, I am in the same boat as you. I've been gluten free a little over 2 years now. I have to say that since December 1st, I haven't felt quite right. I did chalk it up to the holidays. I was careful, but I'm not so sure my family was if you know what I mean. I haven't taken my synthroid since I read Gemini's post. I know that isn't the right answer, but I did get a pretty good nights sleep last night. I will say Abbott has a nice thing on their site, by symptoms it tells if you are getting too much or not enough synthroid. Of course I have a couple on both sides, so I am sure that has to do with how I absorb it. I do aborb many medications strangely, so I'm not sure how to deal with this. I also have an antibiotic to take, which I am dragging my feet because I am still trying to find out it if it is gluten free. I have had so many bad reactions to medication that I would rather suffer than take a chance at what the medication might do to me. I am frustrated and just wonder what I should do. I am glad to hear that Abbott is getting flooded with calls. It would be nice if they do something about it, but then hearing they never said it was gluten free to begin with is very comforting either.

Wendy

curiousgeorge Rookie

I happily take armour thyroid and feel 100% better on it than I ever did on synthroid. Most people who try it.

disneyfan Apprentice
Gemini, Thanks so much for bringing up the information about the synthroid. I have been taking it for over 20 years. I was told that once you take the name brand, they don't want you to take anything else. I am glad to know that the generic is gluten free. I did talk to the pharmacist about it and she said that it could be done but have never talked about it with my doctor. I will now.

disneyfan, I am in the same boat as you. I've been gluten free a little over 2 years now. I have to say that since December 1st, I haven't felt quite right. I did chalk it up to the holidays. I was careful, but I'm not so sure my family was if you know what I mean. I haven't taken my synthroid since I read Gemini's post. I know that isn't the right answer, but I did get a pretty good nights sleep last night. I will say Abbott has a nice thing on their site, by symptoms it tells if you are getting too much or not enough synthroid. Of course I have a couple on both sides, so I am sure that has to do with how I absorb it. I do aborb many medications strangely, so I'm not sure how to deal with this. I also have an antibiotic to take, which I am dragging my feet because I am still trying to find out it if it is gluten free. I have had so many bad reactions to medication that I would rather suffer than take a chance at what the medication might do to me. I am frustrated and just wonder what I should do. I am glad to hear that Abbott is getting flooded with calls. It would be nice if they do something about it, but then hearing they never said it was gluten free to begin with is very comforting either.

Wendy

I have been thinking about this all day! It's driving me nuts! First, please don't stop taking the synthroid as that could create more problems for you. I have been on thyroid meds for about 16 years. I have taken both generic and synthroid. Most of my docs over the years prefer the brand and I seem to do better on that. The only time my thyroid was off the charts was when I discovered I had a gluten problem. Once I went gluten free, I was absorbing my synthroid much better and had to lower my dose. My labs have been stable since and my thyroid levels have been in balance (tweeked a bit to lower the dose) while staying gluten free. So my thought is that synthroid must be ok to take because if not, my levels would still be off as I would be getting glutened. Make sense? I do know that I was switched from the generic a while ago but I can't remember if it was prior to gluten free.

I agree with wowzer in saying that once you take the brand, you should not take anything else. My doctors have always tried to be consistent and I always asked for the brand thinking that's what I was supposed to take.

The ingredient in levoxyl that would be questionable is the corn starch and the dyes. But most postings say its gluten free. I'm getting more confused with everything I read. Does corn contain gluten or not or is it just that corn is not digested well by some people?

I'm tempted to stay with my synthroid if my levels this time are ok. Something must be working and its getting absorbed.

I also know over the holidays I probably ate something I should not have so it's hard to pinpoint any problems I may be having. As for your absorption, you may want to watch when you take your synthroid and make sure you are not taking it with or close to any foods that may prevent absorption. I was reading online a few weeks ago that some people chew their synthroid tablet and that helps.

Good luck!

wowzer Community Regular

Hi, I am wrestiling with calling my doctor on this. I have to say, I have the same calm feeling since not taking it as when I went gluten free. My thyroid levels haven't changed since going gluten free. I also stopped HRT cold turkey when they couldn't guarantee that was gluten free. It was when I first went gluten free 2 years ago. I had no side affects from that so I probably wasn't absorbing it to begin with. Thank you for your concern. Wendy


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Gemini Experienced
Gemini, Thanks so much for bringing up the information about the synthroid. I have been taking it for over 20 years. I was told that once you take the name brand, they don't want you to take anything else. I am glad to know that the generic is gluten free. I did talk to the pharmacist about it and she said that it could be done but have never talked about it with my doctor. I will now.

disneyfan, I am in the same boat as you. I've been gluten free a little over 2 years now. I have to say that since December 1st, I haven't felt quite right. I did chalk it up to the holidays. I was careful, but I'm not so sure my family was if you know what I mean. I haven't taken my synthroid since I read Gemini's post. I know that isn't the right answer, but I did get a pretty good nights sleep last night. I will say Abbott has a nice thing on their site, by symptoms it tells if you are getting too much or not enough synthroid. Of course I have a couple on both sides, so I am sure that has to do with how I absorb it. I do aborb many medications strangely, so I'm not sure how to deal with this. I also have an antibiotic to take, which I am dragging my feet because I am still trying to find out it if it is gluten free. I have had so many bad reactions to medication that I would rather suffer than take a chance at what the medication might do to me. I am frustrated and just wonder what I should do. I am glad to hear that Abbott is getting flooded with calls. It would be nice if they do something about it, but then hearing they never said it was gluten free to begin with is very comforting either.

Wendy

I think the problem with Synthroid is that they claim they can no longer guarantee their product is gluten-free. They may be afraid of liability considering they do not test for gluten content. They shouldn't have to test if they use decent, gluten-free fillers instead of crappy cheap ones! Anything to save a buck and increase profit. I am just guessing on that one but at one time, Synthroid was listed as gluten-free so why the change?

As for switching brands, there is no truth to the idea that you shouldn't switch brands. I switched from Armour to Levoxyl because Armour wasn't doing it for me.

I have nothing against Armour but it does not work for everyone and there is no difference between the natural and synthetic forms of thyroid hormone as far as function is concerned. One is not better than the other. Funny enough, my doctor said the reason she switched me was also because there is a trick that seems to work in many people when your autoimmune reaction is difficult to bring down. By switching brands, very often that alone is enough to knock the autoimmune reaction down.....they do not know why but it works well in some people. Has nothing to do with the T3 and T4 levels......my antibody levels were through the roof and she was very worried about that. With Armour, nothing moved. By switching to Levoxyl, I had a sharp drop in my autoimmune reaction and I am almost into the normal range now. That particular brand has worked extremely well for me so do not be hesitant about trying Levoxyl if you have been on Synthroid. It's the generic form and totally gluten-free.

If you need to take an antibiotic for something, take it! Check the drug list and call the manufacturer to verify but make sure you take it. Infection is nothing to fool around with! I recently went through this with a sinus infection. My doctor always prescribes a Z pack (azithromycin) and only a couple of brands are gluten-free. CVS called around the city where I live to see who stocked the TEVA brand and we found it, funny enough, at a non-chain pharmacy. The other brand that everyone seems to have is from Pfizer and it is not gluten-free......which figures! The brand I took is made in Israel and is one of the few that are gluten-free so that shows you how backwards we are here in the States! How hard can it be to make an antibiotic gluten-free? <_<

Gemini Experienced
Hi, I am wrestiling with calling my doctor on this. I have to say, I have the same calm feeling since not taking it as when I went gluten free. My thyroid levels haven't changed since going gluten free. I also stopped HRT cold turkey when they couldn't guarantee that was gluten free. It was when I first went gluten free 2 years ago. I had no side affects from that so I probably wasn't absorbing it to begin with. Thank you for your concern. Wendy

Wowzer...I use bio-identical hormones, which are rubbed into your forearm and they are gluten-free. They are formulated to be absorbed through the skin so I double checked and the compounding pharmacy was great about it. Not sure if you are still interested in using them but it's a great, and safer, I think, alternative!

  • 6 months later...
blistovmhz Newbie

I have been on Synthroid for 2 years, and even with a TSH of 0.5 and "normal" T4 levels (they don't check for T3...), I've never felt well since being diagnosed with Hashimotos (AutoImmune Hypothyroidism).

I was diagnosed with Celiac disease 10 months ago, and went gluten free immediately, with 2 or 3 slip ups since... Despite that, my condition has gotten progressively worse.

I have been historically, very healthy and active.

Since the Celiac diagnoses, I have not been able to eat more than half what I normally would, I've been chronically dizzy/nauseous, had massive cognitive impairment, heart palpitations, anaemia, and its gotten so bad several times, that I've had to take myself to the ER before I start passing out. Last time I was in ER, I couldn't remember my name, couldn't write, and I passed out and collapsed in Triage several times before seeing a doctor 8 hours later, at which point I felt fine.

Because nothing has gotten better, and there's no way to tell which symptoms belong to which disease, after much research, I decided to switch from Synthroid, to a combination T3/T4 replacement. Took me several months to convince my doc to write the prescription, and because I have no faith in humans, I checked with the maker of the replacement dessicated thyroid he'd given me, for gluten. Sure enough, it has gluten added. I followed up by checking Synthroid, and again, added gluten. I've since discovered, that there is no gluten free thyroid replacement legally available in Canada as far as I can tell. I've checked with 10 chain pharmacies, 2 university med labs, and 4 doctors, and of the 16 people I spoke to, only 1 understood why a Celiac sufferer, would require a gluten free thyroid replacement... even after explaining to them, the relationship between Celiac and Gluten. Grrrrrr and Sigh....

What do I do here? Anyone know of any thyroid replacement at all, that is gluten free? Of those available, are any legally available in Canadia?

My TSH is now up to 85, and I'm about 24 hours from moving to the US.

UPDATE: My doctor's office just called me back, and told me they are aware that both thyroid replacements they've prescribed, contain an unknown amount of gluten, but that I shouldn't worry about it. I told them I AM concerned, as I have gotten progressively worse with neurological and physical symptoms of both hypothyroidism as well as gluten ingestion. I've tracked down a pharmacist who carries Armour. The pharmacist actually chuckled as I explained my predicament, and he confirmed that many people have called with the same story, switched to Armour, and were better a week later.

I've called my Doctor and sorta cornered him into taking me seriously for once, and he's supposedly faxing a prescription over to the pharmacist now.

Gemini Experienced
I have been on Synthroid for 2 years, and even with a TSH of 0.5 and "normal" T4 levels (they don't check for T3...), I've never felt well since being diagnosed with Hashimotos (AutoImmune Hypothyroidism).

I was diagnosed with Celiac disease 10 months ago, and went gluten free immediately, with 2 or 3 slip ups since... Despite that, my condition has gotten progressively worse.

I have been historically, very healthy and active.

Since the Celiac diagnoses, I have not been able to eat more than half what I normally would, I've been chronically dizzy/nauseous, had massive cognitive impairment, heart palpitations, anaemia, and its gotten so bad several times, that I've had to take myself to the ER before I start passing out. Last time I was in ER, I couldn't remember my name, couldn't write, and I passed out and collapsed in Triage several times before seeing a doctor 8 hours later, at which point I felt fine.

Because nothing has gotten better, and there's no way to tell which symptoms belong to which disease, after much research, I decided to switch from Synthroid, to a combination T3/T4 replacement. Took me several months to convince my doc to write the prescription, and because I have no faith in humans, I checked with the maker of the replacement dessicated thyroid he'd given me, for gluten. Sure enough, it has gluten added. I followed up by checking Synthroid, and again, added gluten. I've since discovered, that there is no gluten free thyroid replacement legally available in Canada as far as I can tell. I've checked with 10 chain pharmacies, 2 university med labs, and 4 doctors, and of the 16 people I spoke to, only 1 understood why a Celiac sufferer, would require a gluten free thyroid replacement... even after explaining to them, the relationship between Celiac and Gluten. Grrrrrr and Sigh....

What do I do here? Anyone know of any thyroid replacement at all, that is gluten free? Of those available, are any legally available in Canadia?

My TSH is now up to 85, and I'm about 24 hours from moving to the US.

UPDATE: My doctor's office just called me back, and told me they are aware that both thyroid replacements they've prescribed, contain an unknown amount of gluten, but that I shouldn't worry about it. I told them I AM concerned, as I have gotten progressively worse with neurological and physical symptoms of both hypothyroidism as well as gluten ingestion. I've tracked down a pharmacist who carries Armour. The pharmacist actually chuckled as I explained my predicament, and he confirmed that many people have called with the same story, switched to Armour, and were better a week later.

I've called my Doctor and sorta cornered him into taking me seriously for once, and he's supposedly faxing a prescription over to the pharmacist now.

And people here in the US think socialized medicine is a good thing? :huh:

Your TSH is 85?!?!? That is just plain malpractice! I am glad you are able to get what you need but the doctor telling you that small amounts of gluten are acceptable is totally ignorant and gave you life threateningly bad advice. Is he aware that thyroid meds need to be taken EVERYDAY?

I know for a fact that Levoxyl and Armour are gluten-free so I hope you can get either one on a continual basis. If not, you could move to the US but with the current administration trying to pass the same kind of health care as Canada has, it isn't boding well for Americans either! :o

Don't take no for an answer from the doctor....this should be a learning moment for him! Hope you feel better soon...I also have Hashi's and know how bad it can get!

MKat Explorer
And people here in the US think socialized medicine is a good thing? :huh:

Your TSH is 85?!?!? That is just plain malpractice! I am glad you are able to get what you need but the doctor telling you that small amounts of gluten are acceptable is totally ignorant and gave you life threateningly bad advice. Is he aware that thyroid meds need to be taken EVERYDAY?

I know for a fact that Levoxyl and Armour are gluten-free so I hope you can get either one on a continual basis. If not, you could move to the US but with the current administration trying to pass the same kind of health care as Canada has, it isn't boding well for Americans either! :o

Don't take no for an answer from the doctor....this should be a learning moment for him! Hope you feel better soon...I also have Hashi's and know how bad it can get!

I was on synthroid years ago, switched to armour because it was more "natural". For 6 years it worked great then all of a sudden I couldn't get my levels under control. The doc perscribed Levoxyl and I had a bad reaction to is. I begged to switch back to Syntrhoid and it got me stabalized again. Nothing feels worse than when your thyroid is really out of whack (well, there are worse things but you know what I mean!). All this to say, beware of generics...they many times have different ingredients that the real stuff - I've never reacted to medicine like this before - hives, stiff joints, swollen....yuck!!

  • 4 months later...
Tigercat17 Enthusiast

HI everyone,

I know this is an old post , but I wondered if anyone else felt that they were being glutened by their synthyriod.

I' pretty sure my new dose of thyroid has gluten in it. I was taking the 137 synthyiod for about a year. I've only been gluten free for three & a half months. I did have my Ab, IgA antibodies tested on Nov. 20th and they were down to a 3. And they were 157 in Sept. 09.

Now I just started taking a new dose (125 synthyroid) been on it for two weeks & I feel horrible. My stomach hurts ( pains on both sides of my abdomen) , very bloated, I feel like I can't eat, and my acid reflux is back. It's the same symptoms I had right before I got diagnosed with celiac. So, I called my doctors & they ordered another antibodies test on Dec. 16th. This time my Ab, IgA was 67! So, I'm definitely getting glutened! I haven't done anything differently. I don't go out to eat at all & I make everything fresh.

wowzer Community Regular

HI, That was how I felt a last year after the holidays and blamed that at first. I finally went on the generic version and it is gluten free. I have been doing fine on the generic version, so it may be worth checking into. Good Luck.

DownWithGluten Explorer

Oh Lord. Really? Somehow my mom found a way a while ago so that we were stocked up on synthroid for the past several years without needing refills so I've been fine. But mine are running low lately. Perhaps I should ask for the generic brand when I get it again. What is the generic brand? Thanks for this thread.

And like someone said...often times autoimmune and celiac/gluten intolerance go hand in hand. So you'd think the pharmaceutical company making Synthroid would wise up.

  • 2 weeks later...
Tigercat17 Enthusiast

I just wanted to let you all know I feel so much better since I've been off the synthriod 125. I feel really good! I've been off it for almost two weeks now & I feel so much better. I haven't changed anything else in in my diet, so I know I was definitely getting glutened by the synthriod. I am now able to eat, the bloating is gone & the pains in my stomach are going away. Even my feet were starting to ache & swell again, but that is also going away. I can't believe all of my symptoms came back again. I was losing weight & now I gained three pounds back since I've been off it. I only was on the synthriod 125 for two weeks before I figured it out. I was taking the 137 synthriod , but that didn't bother me. As soon as I took the 125 that same day, but later in the evening I had serve pains on my left side under my ribcage while I was eating dinner. I looked into everything I ate that day & everything was gluten free. I also have a gluten free kitchen, so I know there was no chance of CC. I also been eating all fresh meats, fruits, veggies & some rice. I was not eating anything processed. It was really driving me crazy trying to figure it out. I was being to think I had another disease or another intolerance but meanwhile it was that stupid synthriod the whole two weeks & I was just getting sicker & sicker. I was starting to waste away again.

When I called Abbott for the second time & the sale rep. told me they don't market this pill as gluten free. After my doctor seen that my antibodies raised again within a three week period, he did switch me to Levoxly & I know he really wanted me to be on synthriod since I don't have a thyroid & it's supposed to be more consistent. My thyroid was removed last year due to thyroid cancer. I'm seeing him today & can't wait to thank him for believing me and changing my medicine.

I just wanted everyone to be aware of this. I'm sure they're probably not using gluten as a filler, but I think their suppliers might have CC issues and that's why they can't say it's gluten free. I don't know why they tell us they survey their suppliers , but still can't guarantee it's gluten free. It's like they're contradicting themselves. I know I'll never take the synthyriod again. <_<

Gemini Experienced
I just wanted to let you all know I feel so much better since I've been off the syntyriod 125. I feel really good! I've been off it for almost two weeks now & I feel so much better. I haven't changed anything else in in my diet, so I know I was definitely getting glutened by the synthriod. I am now able to eat, the bloating is gone & the pains in my stomach are going away. Even my feet were starting to ache & swell again, but that is also going away. I can't believe all of my symptoms came back again. I was losing weight & now I gained three pounds back since I've been off it. I only was on the synthriod 125 for two weeks before I figured it out. I was taking the 137 synthriod , but that didn't bother me. As soon as I took the 125 that same day, but later in the evening I had serve pains on my left side under my ribcage while I was eating dinner. I looked into everything I ate that day & everything was gluten free. I also have a gluten free kitchen, so I know there was no chance of CC. I also been eating all fresh meats, fruits, veggies & some rice. I was not eating anything processed. It was really driving me crazy trying to figure it out. I was being to think I had another disease or another intolerance but meanwhile it was that stupid synthriod the whole two weeks & I was just getting sicker & sicker. I was starting to waste away again.

When I called Abbott for the second time & the sale rep. told me they don't market this pill as gluten free. After my doctor seen that my antibodies raised again within a three week period, he did switch me to Levoxly & I know he really wanted me to be on synthriod since I don't have a thyroid & it's supposed to be more consistent. My thyroid was removed last year due to thyroid cancer. I'm seeing him today & can't wait to thank him for believing me and changing my medicine.

I just wanted everyone to be aware of this. I'm sure they're probably not using gluten as a filler, but I think their suppliers might have CC issues and that's why they can't say it's gluten free. I don't know why they tell us they survey their suppliers , but still can't guarantee it's gluten free. It's like they're contradicting themselves. I know I'll never take the synthyriod again. <_<

How great is it that you were able to figure this out so quickly? ;) Synthroid is not gluten-free and there are other, better meds to take for thyroid disease which won't make a person sick. I am currently using a totally compounded T3/T4 so I KNOW it is gluten-free. I was using the Levoxyl for a long time but needed to supplement with T3 also, which Levoxyl doesn't contain. Other than that it worked very well for a long time.

Glad you feel better and have gotten to the root of your problems!

Tigercat17 Enthusiast
How great is it that you were able to figure this out so quickly? ;) Synthroid is not gluten-free and there are other, better meds to take for thyroid disease which won't make a person sick. I am currently using a totally compounded T3/T4 so I KNOW it is gluten-free. I was using the Levoxyl for a long time but needed to supplement with T3 also, which Levoxyl doesn't contain. Other than that it worked very well for a long time.

Glad you feel better and have gotten to the root of your problems!

Thanks Gemini!

It was a real struggle there for a while. It took me two & a half weeks to figure it out. Luckily I've been using a food diary & I document everything in it -food, how I feel , medicines & what I did for the day. So, I just went through it again & again until that was the only thing I seen that changed in that time period. I almost didn't want to believe it, but that's definitely what it was. Stupid synthroid! I was just starting to feel pretty good & then Wow! I really was starting to think I had another disease. I even went to the ER. Of course they didn't figure it out. I feel like I have to be my own doctor with this disease. The doctor's are just clueless....

By the way, do you feel better with the T3/T4? I was wondering if I needed this also, but it seems that I was okay with the T4, but then again I really wasn't okay since I was eating gluten for so long without knowing I had the celiac. How did you know you needed the T3?

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    3. - Scott Adams replied to Dawn Meyers's topic in Related Issues & Disorders
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      Vaccines

    4. - Dawn Meyers replied to Dawn Meyers's topic in Related Issues & Disorders
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      Vaccines

    5. - pdm1981 replied to Dawn Meyers's topic in Related Issues & Disorders
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      Vaccines


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    • BIg Nodge
      Scott, thanks so much for the thoughtful replies. My doctor did actually just re-order thyroid labs to see what is going on with my TPOs. I agree that will be interesting information.  I think I know the answer to this, but as far as the biopsy . . .. that would be quite conclusive as far as celiac goes, but a negative result would not rule out NCGS, correct? Does NCGS also cause damage to the lower intestine/leaky gut?  I appreciate the thought that I should be open-minded to other causes. I did not have dysautonomia on my radar, so I will look into that. From a quick scan at the potential symptoms it seems like almost anyone could convince themselves they have it, very broad! I can see why that is a tricky one to diagnose. I did also show low vitamin D, I'm in New England so that is somewhat common. I have a memory of low iron on some lab result as well but I can't find it, so I'll look into that. My cholesterol is high too, so working on that.  While the initial adjustment was tough, I have actually adapted fairly well to going gluten-free at home. The tough part for me is I love eating out and traveling, so that has been a challenge. I suppose if the answer ends up being NCGS then I could maintain a mostly gluten-free diet but also experiment with the occasional splurges. Snowboarding just doesn't feel right without a beer in the lodge . . ... cider is just not the same!  Thanks again.  
    • Dawn Meyers
      I did some research and found out that vaccines put preservatives, sugar alcohols and metals in them. Which I have a intolerance too.  I was supposed to do testing to find out metal's I was allergic to because I can't  wear jewelry of any kind. Mayo felt I had other allergies also.
    • Scott Adams
      For individuals who have experienced negative reactions to the flu vaccine, there are alternative formulations that may reduce the risk of allergic responses. Traditional flu vaccines are typically produced using egg-based methods, which can pose issues for those with egg allergies. However, there are now several egg-free options available, such as cell-based and recombinant flu vaccines. Recombinant Vaccines (e.g., Flublok Quadrivalent): These are produced without the use of eggs and are grown in insect cells, making them a suitable option for individuals with egg allergies. Cell-Based Vaccines (e.g., Flucelvax Quadrivalent): These vaccines are also egg-free and are produced using mammalian cell cultures, which can be a safer alternative for those with egg allergies. Other Considerations: If you have had a reaction to a specific component of the flu vaccine (e.g., gelatin, preservatives, or antibiotics), discussing your medical history with a healthcare provider is crucial. They can help identify vaccines that exclude these ingredients. It's important to consult with an allergist or healthcare provider to determine the safest option based on your specific allergies and medical history. They can also provide guidance on pre-vaccination testing or desensitization protocols if necessary. Also, at @trents mentioned, could you be getting hidden gluten in your diet? Do you eat in restaurants? If so, this could be why you still have high gluten antibodies.
    • Dawn Meyers
      Mayo is great and yes I had the same experience.  They take you seriously and they check everything.  I to wish other Dr's cared that much. I sure hope it's not refractory celiac also.  
    • pdm1981
      When I went to the Mayo Clinic back in 21' it was pretty amazing. The doctor sat and went over everything with me for a couple hours. I finally had to ask him if he had other patient to see. He said that not until he was done with me. I went back to my hotel room that day after some blood work and then got an itinerary of tests to be done over the next 5 days. It was unbelievable. I had what would've been 4 years of testing back home done in 5 days. I went home at the end of 5 days and got my results a week later on a zoom call. EPI and rapid gastric emptying syndrome. I do have celiac disease but that wasn't the cause of my continued symptoms. Those people up there are great. Wouldn't that be amazing if all medical care was like that?  That's weird that the antibodies are that high. Hopefully it's not refractory celiac disease. Good luck.
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