Gluten free thyroid medications

[KimMS]

Hello! I did a brief search on this and couldn't find recent posts, but feel free to direct me to something if I missed it! I have had a difficult time confirming which thyroid medications (specifically generic forms of Levothyroxine) are gluten-free and safe for celiacs. I am pretty confident the generic manufacturer Mylan is safe, and I have been taking this for almost two years. Recently (I think b/c of a recall), Mylan has not been available at my local pharmacies. The list I typically use for gluten-free drugs (http://glutenfreedrugs.com/newlist.htm) does not list any of the other manufacturers offered by pharmacies in my area (Accord and Macleod). When I do a search, sites tend to say these brands are gluten-free but I can't fully confirm, and other sites say that only Lannett and Mylan generic brands are safely gluten free. I have called manufacturers and they say "there are no gluten ingredients" but they don't have information regarding manufacturing/cross contact. In particlar, Accord said there is gluten present in the manufacturing facilities so they can't guarantee no cross contact.

What recommendations do you have for finding levothyroxine that I can mostly be assured is safe for celiacs? It is tricky b/c I found one I was confident in but now I can't seem to get that manufacturer at any pharmacy near me. I don't want to be unnecessarily overly concerned about this, but since it is a medicine I take daily, I want to be pretty certain it is safe (I have both celiac and gluten ataxia so I need to be very careful with any gluten intake and cross contact.)

 

 

 

[Scott Adams]

I don't believe that site is updated regularly, and it may be unreliable. 

You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication:

To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area.

• https://dailymed.nlm.nih.gov/dailymed/ 

 

[KimMS]

Thanks for sharing that site! Do you know if that site has any information about manufacturing/possible cross contact on it? I can't find it. When I have called manufacturers, most of them say they can't guarantee no cross contact in manufacturing (except Lannett, Mylan and possible Amneal, which aren't available near me).

[Scott Adams]

The pharmaceutical industry (including BIG PHARMA! 😉) is very good about cleaning procedures before different drugs might be made using the same machinery. I don't believe cross contamination would be something to worry about, otherwise people with serious allergies, for example to antibiotics, would have serious issues with prescriptions drugs.

[KimMS]

Thank you. This is very reassuring!

[Pgetha]

I have been dealing with this same issue for our son who has Down’s Syndrome and Celiac Disease. Insurance, (Medicaid) outright will not cover the Gluten Free which is a capsule under the brand name Tirosint and another manufactured by Lanette and a third by Yaral. 
 

Just yesterday, Medicare (not Medicaid) finally approved it but this was after 6 months of paying out of pocket to the tune of $148.00 a month! It’s been a nightmare. If his dose changes, we have to repeat the process!  His dose changed three times in a month! Thyroid management is a moving target as it is with Celiac Disease greatly compounding the issue. Very frustrating. 

[Scott Adams]

I know what you mean about the high cost of drugs. I recently had to get meds for my mother from a Canadian pharmacy because only the non-generic version is available is the USA, and it is ~$550 per month here, while in Canada the generic version is only around 1/3 the cost. 

[maryannlove]

Same problem in Pittsburgh.  Have Hashimato's so been taking Mylan (generic) levothyroxine for many years.  Pharmicist tried to routinely order yesterday and called to tell me it's unavailable.  That I could try to find elsewhere and have script forwarded to them.  Just spent couple of hours online researching.  What a pain for so many of us!  Using http://glutenfreedrugs.com/newlist.htm (which know is old and doubt updated) reminded me that long ago I used to take Sandoz brand.  Just went on their website and appears they no longer make (maybe why switched to Mylan).  Back to square one.  Using chart from glutenfreedrugs.com says for manufacturers I'll list afterwards "Manufacturer doesn't knowingly add gluten, however since they don't do any final testing they won't guarantee it to be gluten-free but it is very unlikely that it is contaminated with gluten."  Might be best I/we can do.  Along with Mylan, those manufacturers on chart are: Lannett (per website still make) and Neopharma (didn't find on their website).  Paloma Health's website says CERTIFIED gluten free are:  Lannet brand of levothyroxine, Nature-Thyroid, Tirosint (expensive), WP Thyroid.  Other thyroid meds that are gluten-free but not certified:  Levoxyl, Synthroid, Euthyrax, Mylan Brand (wish could get), and Armor with a caution contains sodium starch glycate which may contain gluten.  I'll submit Lannett to pharmacist.  If successfull, will share.  

[trents]

It occurs to me that this might be a good application for gluten test kits, since the test kits seem to require samples in power form and pills can easily be rendered in that form. According to this article, and it seems to be current, there are three choices when it comes to gluten test kits: https://www.verywellhealth.com/gluten-detectors-and-test-kits-comparing-the-options-4126736

While it is not an inexpensive solution, at least it shouldn't be necessary to use very often once you establish a med either is safe or not.

[maryannlove]

Before I could call them (after all my research), Costco Pharmacy called and told me they found a generic gluten-free levothyroxine.  Was told name is Amneal brand.  Said they called and company  confirmed is gluten free.  Only one I had found was Lannett so did more research and found:  “BRIDGEWATER, N.J., Nov. 12, 2018.  Amneal Pharmaceuticals, Inc. (NYSE: AMRX) today announced that it has completed a transition agreement with Lannett Company. Under the terms of the agreement, Amneal will take over the distribution and marketing of Levothyroxine sodium tablets from Lannett beginning December 1, 2018 through March 23, 2019, ahead of when the Company's previously announced 10-year Levothyroxine distribution agreement with Jerome Stevens begins on March 23, 2019.” So looks like we’re good until at least 6/23/29. 

Active ingredients are colloidal silicon dioxide, lactose, magnesium stearate, CORN STARTCH, acacia, sodium startch glycolate.

Bottom line:  We can tell our pharmacists we need gluten-free, generic Amneal brand Levothyroxine.   AMEN.  

[Scott Adams]

I'm sure you can find other gluten-free versions here.

You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication:

To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area.

• https://dailymed.nlm.nih.gov/dailymed/ 

 

[KimMS]

Thanks for sharing this! Have you started taking the Amneal? I'm curious how it's going for you. My pharmacy gave me the option of Accord, Macleod or Amneal. I didn't realize that Amneal was formerly Lannett, or I might have chosen that one. However, I did read some anecdotal reports that some people had side effects with Amneal, so I chose Accord. I have been taking it for 3-4 weeks and the past 10 days I have developed extreme fatigue/sluggishness, joint pain and some brain fog. I don't know if it is the new levo med, but nothing else has changed.

Has anyone else taken Accord levo? Any issues? It seems to fall into the "no gluten ingredients, but we can't guarantee 100%, but it's likely safe category." I'm wondering if it is worth switching to Amneal or at least getting my thyroid levels checked. If the med is causing my symptoms, I'm guessing it's not because of gluten but maybe the potency is different from Mylan and I need different dosing. Accord was recalled for lower potency, but my pharmacist said the pills I have were not part of that lot.

 

[maryannlove]

Unfortunately not going to be able to let you know how Amneal is working because I still have almost 3 month supply of Mylan.  Had annual appointment with endocrinologist last week (though get scripts for blood work more often) and since was on my last refill, she sent new script to pharmacist.  Staying on my Mylan until it's gone.  (I tend to build up a supply because after trying a couple of endocrinologists for my Hashimotos, one finally got my thyroid regulated by my taking only six days a week instead of adjusting the strength which had me constantly up and down.  Will be forever grateful to her.  Apparently high percentage of folks with Celiac also have Hashimotos so all this relevant/helpful on Celiac.com.    

[maryannlove]

Thought was finished with this but a friend just sent email saying she takes Tirosin liquid levothyroxine which has no fillers (mentioned by Pgetha above).  Friend's doc sends script to one of Tirosin's direct-mail pharmacies.  Looking that up, government insurance (Medicare/Medicaid) doesn't cover (as Pgetha wrote above).  But if use one of their direct-mail places three month supply is $57/month.  Researching that, happened to learn Yaral also makes a generic gluten-free levothyroxine.  

[knitty kitty]

Do be sure to talk to your doctors and dieticians about supplementing with a B Complex and extra Thiamine (Benfotiamine, TTFD, thiamine hydrochloride) and other nutrients one might be low in due to malabsorption of nutrients in Celiac Disease.

This study shows that Thiamine deficiency and Vitamin C deficiency is frequently found in Hashimoto's.  From personal experience, Thiamine and Vitamin C has helped my Hashimoto's.

Hypothyroidism Complicated by Vitamin C and Thiamin Deficiency in Surgical Patients

https://pubmed.ncbi.nlm.nih.gov/37278003/