Topic: Important New Warning About Thyroid Meds & Gluten
TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
This topic is re-posted from the General Support forum so that everyone will have a chance to see it. I've copied and pasted it verbatim from its original source (link below), without breaking it up into shorter paragraphs and sentence spacing per Lymenet protocol.
I wanted to pass on a quick note to you. As you know, I’ve found that 88% of my clients and readers with Hashimoto’s feel best gluten-free, even when they don’t have Celiac disease. Some people have even been able to get into remission by going gluten-free.
We know that in some sensitive individuals (such as those with Celiac disease), even tiny amounts of gluten can produce days and weeks of symptoms.
As of last week, one of my readers has let me know that the Pfizer brand of Cytomel (a T3 containing medication) may have gluten as an ingredient, and she believes this has affected her health, leading to an increase in thyroid antibodies, liver antibodies and symptoms. She has asked me to share this important warning with you.
"I found out yesterday that the Cytomel I have been taking for the past year and a half contains gluten as a filler, when it used to contain corn starch. I spoke with Pfizer and they said it not longer uses corn starch and that there is indeed gluten in the pills. They categorically refused to tell me what they used, but on further research, I believe it is wheat. I have severe gluten sensitivity, and possibly the beginnings of celiac disease, so this is a huge problem. I've developed high liver enzymes since I started Cytomel, believing it was safe. I also have documented liver damage. This is so alarming to me that I'd like Dr. Wentz to help inform others of this terrible danger to those with gluten issues. I am hoping that a compounded T3 and liver support and detox will reverse the issue for me.
I believe the Hashimoto’s community has a right to know that Pfizer changed the filler to a gluten one. It is irresponsible and dangerous."
She also added that despite ongoing numerous interventions that brought her thyroid antibodies from 2700+ to the 400’s, her thyroid antibodies have started to increase after starting the Cytomel.
This is very alarming and disappointing news to me, but also lets me know that we have much more work to do in advocating for our own health.
I spoke with a very nice medical information representative who confirmed that the starch in Cytomel can be corn, potato or wheat derived and that Pfizer is not able to verify the source. I informed her about my experience with Hashimoto’s, my advocacy work, social media and email reach, as well as the high percentage of people with co-occurring Hashimoto’s and Celiac disease.
I made a formal request to make Cytomel gluten-free and after she noted my request, she advised me that receiving additional requests may help the cause. So I’m asking you to help...
If you’re a patient on Cytomel, please take action with me to create change: 1.Call Pfizer on their patient line. From the Pfizer website: To report a side effect, adverse reaction, or concern about the quality of a Pfizer product: Call Pfizer at 1-800-438-1985
Here’s your script:
“Hello, I am a patient with hypothyroidism who is taking Cytomel, and I’m very grateful for the medication. However, I also have gluten-sensitivity/Celiac disease/Hashimoto’s. The primary reason for hypothyroidism in the United States is Hashimoto’s. 1.2% to 15% of percent of people with Hashimoto’s have Celiac disease, and the risk of Celiac disease increases the longer people have Hashimoto’s. I’d like to request that Cytomel be made gluten free.”
If you have a personal story of how you felt worse after starting Cytomel, let them know.
Tips:
Mindset: Please note, the people on the other end of the phone want to help you, as do their bosses and everyone above them. They just don’t know what you know, so it’s your responsibility to let them know in a kind and respectful, but firm tone.
Please keep it brief, be respectful, polite and courteous. Medical professionals stop listening when the person on the other side of the phone begins to yell, whine, swear or act rudely. 2.Sign my Pfizer, Please Ensure Cytomel is Gluten-Free Petition.
Having worked in the pharmaceutical industry myself, I am confident that if this message gets to the right person with make-it-happen power, Pfizer will want to make this right for their patients.
While I love a great conspiracy theory, I don’t think this was an intentional move to harm patients. I can tell you first-hand that every person I’ve met in the pharmaceutical industry cares about people’s health and I don’t think it logically makes sense for a drug company to intentionally cause harm to us.
If you take brand name Cytomel
Alternative gluten-free medications to the Pfizer brand Cytomel include the following generic brands: •Liothyronine (SigmaPharm)-Per Aurora in the medical information department, this product does not contain gluten, however the mannitol is wheat-derived. The starch is derived from cornstarch. No gluten was detected in the product on testing. •Liothyronine (Paddock)- (per Cassandra in the medical information department) -all strengths are gluten-free
I also have some good news…
In my 2014 post on gluten in medications (since updated), I wrote about the potential for gluten cross-contamination with Synthroid. I learned about this from a few of my clients with co-occurring Celiac disease, who’d been started on Synthroid and felt worse, or began to have Celiac-related symptoms that resolved after getting off Synthroid. (Synthroid initially didn’t have gluten, but at some point in 2013/2014, reports of potential cross-contamination began to surface, perhaps as things changed within the company).
I verified this cross-contamination issue again with AbbVie (the manufacturer of Synthroid) in late 2015. I was able to express my concern to a representative at AbbVie who assured me that efforts were made to remove gluten from Synthroid.
As per a letter I just received from AbbVie, Synthroid, as of May 2016, is gluten-free. I see this as a victory for thyroid patients and hopefully as a sign that the voice of the thyroid community is heard (and maybe Pfizer will listen too?). **Please note, older batches of Synthroid that are floating around may still contain gluten.
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