Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Gluten In My Thyroid Meds!


climbmtwhitney

Recommended Posts

climbmtwhitney Apprentice

Hi all,

So, I found gluten in my thyroid meds -- generic Cytomel (T3)!!! :o

I have been getting progressively sicker over the last few months. Headaches, severe shortness of breath, zero stamina, stomach issues, etc. I work out regularly on my own plus 2x/week with a trainer. Finally, after embarrassing myself yet again with zero exerise tolerance with my trainer I made an appt with my endo guessing my thyroid was off. My doctor said I may have switched from being hypo to hyperthyroid and may be over medicated. I have been taking T4 and T3 for about 6 years. So, we did the labs for thyroid and a bunch of other stuff.

After he convinced me I must now be hyperthyroid I dropped my dose (37.5 mcg/day) of Cytomel T3. After just a couple of days I started feeling so great! Then after about 4 or 5 days I was freezing cold and sleepy (like I was hypothyroid again), but still oddly felt great otherwise. So, 10 days later I got my labs. Normal! In fact my T3 was borderline between normal and low. So, why did I feel better not taking it??? It didn't make any sense. Was there gluten in the pill? So, I crushed up a couple of weeks worth and ran the Elisa-Tek gluten test--twice. Positive! There was gluten in my pill!!! D*** it! Furious. Absolutely furious. :angry:

Turns out my T3 generic was coming from a new lab that I had never used and it was different lab than my T4. The pharmacy had switched it. Taking my thyroid every morning was like taking a dose of cyanide.

Anyway, I confirmed the results with Elisa-Tek then I ran it up the food chain at both the pharmacy and the drug manufacturer. I've switched brands and am feeling great!

Beware.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Takala Enthusiast

I don't take thyroid meds, but it is so outrageously wrong for a pharmaceutical company to be having undeclared gluten in a medication that is frequently used by celiacs, it may be time to organize for an FDA intervention. This is criminal behavior.

burdee Enthusiast

I'm so sorry to hear about your experience with your T3 (Cytomel) supplement. I requested generic liothyronine (T3) made by the Paddock company, because Cytomel contains a sugar ingredient. Because I have a cane sugar allergy, I avoided that brand and opted for the Paddock T3 product. I've never had any problems with my generic liothyronine. I hope you continue to improve on your new T3 supplement.

sandsurfgirl Collaborator

Wow that is terrible! How can a drug company even use gluten in their products? That is so wrong. You shouldn't have to check every time you pick up your meds. Wow.

DonnaMM Explorer

It literally makes me sick to my stomach the crap our government allows into our medications. I have celiac so I needed to evaulate and/or change all my medications (although my endocrinologist does not seem to think the gluten in my synthroid is a big deal) I disagree so I will just have my primary change it, but I hate that I have to check every medication. I have severe acid reflux and a clotting condition so I must be on aspirin and protnix, although these two medications are gluten free, I am also allergic to corn and I fear that if I ever get a blood clot (related to the clotting condition) and need to be on coumadin the coumadin will not help me much because of the celiac and malabsorption and my allergy to corn which is pretty much in everything, although fortunately my reaction to corn is mild and the small amount in my pills does not seem to bother me. Although I really feel for people that have a severe allergy to corn, I could not imagine compounding all my medications and spending all that money, just so I can make sure that something that is supposed to make you better does not kill you, even some benadryl has corn in it, how will that stop a corn allergy sufferer from having their throat closed. Sorry I just really hate the FDA and that was me on my soap box

MaryJones2 Enthusiast

Who is the manufacturer of the Cytomel that you mention? Also, what response did you receive from the company?

Roda Rising Star

I know the brand name of Cytomel is manufactured by King Pharmaceuticals.

Paddock and Mylan also make generic liothyronine.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Skylark Collaborator

Please, what brand had the gluten and what brand was safe??? I take the Mylan T3.

Roda Rising Star

Hey Skylark I have taken all three of those brands you mentioned and don't recall any problems with them at the time. I started out on cytomel before it went generic. Then when it went generic, my insurance switched me. First was on Paddock then Mylan was subbed for one or two 3 month refills and then the pharm switched back to the Paddock. I decided to go back to brand name to stay consistant with the dosage. I'm doing alright so far. I know that doesn't answer your original question though.

Skylark Collaborator

Thanks Roda. That's a bit of comfort. :)

I PM'd Jillian in the hopes that she'll come back and give us more details.

Skylark Collaborator

Jillian wrote and the Paddock 50 mcg had the gluten. Mylan is safe.

Roda Rising Star

Jillian wrote and the Paddock 50 mcg had the gluten. Mylan is safe.

I was taking the 5 mcg from paddock and was fine taking two at a time. I suppose that the different dosages could differ. I'm now taking the brand name Cytomel 25 mcg. I have found I am able to tolerate that dosage if I split it and take it twice a day (better really to keep blood concentrations more level). I had been taking a total of 25 mcg of the paddock all at once(I was taking 5 of the 5mcg to use it up) and could not tolerate it at all. Since switching and dosing how I am now, I feel great. I'ts giving me that added boost I need in the afternoon.

MaryJones2 Enthusiast

I would still like to know the response of the manufacturer to your inquiry.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams replied to Jhona's topic in Introduce Yourself / Share Stuff
      35

      Does anyone here also have Afib

    2. - Jacki Espo replied to CDFAMILY's topic in Related Issues & Disorders
      5

      Covid caused reoccurrence of DH without eating gluten

    3. - Mari replied to tiffanygosci's topic in Coping with Celiac Disease
      1

      New Celiac Mama in My 30s

    4. - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      2

      My only proof


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,959
    • Most Online (within 30 mins)
      7,748

    jenny44
    Newest Member
    jenny44
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      If black seed oil is working for his Afib, stick to it, but if not, I can say that ablation therapy is no big deal--my mother was out of the procedure in about 1 hour and went home that evening, and had zero negative effects from the treatment. PS - I would recommend that your husband get an Apple watch to monitor his Afib--there is an app and it will take readings 24/7 and give reports on how much of the time he's in it. Actual data like this should be what should guide his treatment.
    • Jacki Espo
      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.