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Thyroid Medication?

mzeppo3

By mzeppo3
in Related Issues & Disorders

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mzeppo3 Newbie
mzeppo3
Posted

I have celiac and crohns and was just diagnosed with stage 1 papillary thyroid cancer. I'll be getting a full thyroidectomy and then will start on thyroid medication the rest of my life. Anyone on a gluten free thyroid medication that really agrees with them? I've been researching and found about 5, I see synthroid can no longer guarantee their gluten free status. I'm more worried about my body adapting to no thyroid than the surgery itself, it sounds like nightmare trying to find the right dosage.

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nvsmom Community Regular
nvsmom
Posted

Sorry to hear that you have to go through this.  Good luck with the surgery.

 

I took Synthroid for about 9 months and never felt great on it.  Part of that problem was that they started me off low and you need to wait 6 weeks between dose changes.  By time I got up to a full replacement dose, it had been a long time, and it still didn't feel good. 

 

I imagine that they'll be starting you off at a full replacement dose since you'll have no other source of hormones.

 

Back to Synthroid, I was told there was no gluten but they couldn't guarantee it was gluten-free, but many places say that about their products.  Gluten may not be listed in the ingredients but they aren't spending the extra money to test their product to prove that it s gluten-free, even if it is.  I believe Synthroid in Canada was safe.

 

I switched to a natural dessicated thyroid called Erfa's Thyroid (Canadian company) and I like it MUCH better than Synthroid.  Perhaps it is just the placebo effect (for 2 years) but the idea that I am taking ALL the hormones that a thyroid should make, like T0, T1, T3, T4, just makes more sense to me.  I know the pig's thyroid ratios are different than mine (higher T3) but I just make sure my free T3 stays in the 50-75% range of my lab's normal reference range, and I feel quite good (even though my TSH is suppressed at  about 0.01).  I figure, my body made all of those hormones for a reason, right?  Just taking T4 seemed kind of like a half measure to me.

 

I do still have my thyroid. It doesn't do much though.

 

Best wishes.  :)

VeggieGal Contributor
VeggieGal
Posted

Hi, sorry also that you have to go through this. I had a total thyroidectomy over 3 yrs ago now.

At first i started off on low dose then raised it gradually. I was on tablet form levothyroxine and tried different makes, most of which made me feel like my throat was closing up (a very scary experience). I must've been allergic to an ingredient but I'm still not sure what. I was eventually put on Levothyroxine oral solution (I'm in the UK and this is about £80 a bottle so my gp wasn't happy). I feel fine but agree with nvsmom and would've much preferred to use the natural form but unfortunately I can only get it off ebay which makes me nervous of quality and dosage. Hope all goes well

nvsmom Community Regular
nvsmom
Posted

I had some sort of reaction to the Synthroid 100mcg dose (I think it was).  It would make my lips puffy and my mouth felt wrong.  My guess is it was the dye but I have no real proof.

cyclinglady Grand Master
cyclinglady
Posted

I have Hashi's and have successfully taken Armour Thyroid for almost 20 years. It is gluten free and it has been around for over 100 years and is manufactured in the Mid-West.

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I think you will do fine. Just work with your doctor and get those lab tests every six weeks for adjustments until you are stable and not experiencing any symptoms.

Judy3 Contributor
Judy3
Posted

I had a thyroidectomy in 2013.   I take Levothyroxine daily now and don't have any issues with it. I'm not sure of the brand, the label says LAN but my pharmacy got me a special one because of the Celiac I know that.    My pharmacy is quite good where they check all my meds for gluten before they hand them over to me. 

icelandgirl Proficient
icelandgirl
Posted

You have so much going on... (((hugs)))

The thyroid is a pain to get regulated. At least mine is. Lol! I currently take Levoxyl...I had a reaction to synthroid. I've also tried a synthetic T3 twice with issues both times. Levoxyl has worked better than any others for me, but I'm still having issues as my body doesn't convert from T4 to T3 as it should.

They will likely start you off on a smaller dose and then gradually move you up until your levels get to where they need to be. I hope for you that the surgery goes well and that the medication works well right off the bat.

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StephanieL Enthusiast
StephanieL
Posted

Leyothyroxine is gluten-free from what DS's end said.  He wanted to switch DS but they don't have his dosage in that brand. The thing with that is when it is written for Levo they you get Levo as it's a "brand name" and won't be switched for another brand when written as such.  We use Mylan brand and have for a few years.  I do call when we change dosages but they said they are all gluten-free.

mzeppo3 Newbie
mzeppo3
Posted
  • Author

Thanks everyone for your responses! Made me feel a lot better

LauraTX Rising Star
LauraTX
Posted

There are plenty of generic options for Synthroid- levothyroxine- that do not contain gluten.  Mylan is the brand I take.  As long as you stick with the same manufacturer you won't have the problem of needing to adjust dosing.  But if you change manufacturer you need to get new bloodwork done in six weeks.  This is why a lot of doctors will prescribe brand name only, but as long as you pick one manufacturer and stick with it, you are fine.

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