Guest Post by Jacqueline about the availability, or not, of T3-only meds
The following is written by thyroid patient Jacqueline of the United States, and may be of interest to all of you who use T3 / T3-only, no matter where you live. Her mention of Cytomel is a major brand of T3, but there are other versions.
Let Jacqueline and others hear about your issues with finding T3.
Just spent the better part of two hours trying to locate some Cytomel after Walgreens and Safeway said they and all their distributors (which are used by all the other pharmacies) are out of the 25 mcg size tablets. I have tried to locate Cytomel at least two times in the last 6 months. Earlier, I had been able to locate some in the pipeline of pharmacies and distributors. But not anymore.
Keep in mind that I do not convert T4 to T3 very much ( I do take NP Thyroid for T4, T3, T2, T1). I have tried generic and compounded T3 meds and got nothing from them. So I switched back to Pfizer-branded Cytomel last year with now a HUGE expense as the price is now so high that the formularies do not list it any more, meaning I only get 20% coverage.
Per day, I take two of the 25 mcg of Cytomel by Pfizer, plus 60 mcg (~1 grain) NP Thyroid. I have taken Cytomel for 20 years. To try to save money after Pfizer hiked the price about six (?) years ago, I tried switching to the generics and to compounded T3. But they were very ineffective for me, and I have been dealing with health problems that the attempted switch caused for the last year and a half. I resigned myself to the high expense, but now Pfizer has disrupted the supply, and may now be making changes in how/where it is made. UGH
My experience in trying to reach Pfizer
1. When I tried to send an email to Pfizer via their website, the field keeps saying I have too many characters no matter how many are in the box, so that was a failure.
2. When I called Pfizer Customer Service 800-533-4535 five times today this happened: there is only voice option to respond to questions on the menu, so I said “Product Information”, then “Cytomel”. They cut me off every time. No idea if the call system is broken or the product name triggers the line to be cut.
3. When I called 800-438-1985, I took the section for “Professionals” because that was the only thing that made sense. A service rep took down all my personal information, then found me a customer rep.
What Pfizer’s customer rep stated to me i.e. these “company-lines”:
a. 50 mcg is not being made until March 2019, and is unavailable. (I could use this size of the pills by cutting them in half, would save me the most money, actually.)
b. 25 mcg is not being made until March 2019, and can be ordered by pharmacy drop ship to individual patients. Actually, the manager Safeway’s pharmacy refused to do this for me. My Walgreens pharmacy did it, by going though their distributor, which the customers service rep did not understand would be necessary. Pfizer gives only two bottles per call to the pharmacist, and I got one, another client got the other. I have no idea how long this will take – last time Walgreens ordered a drop ship of Cytomel, it took 3 weeks, acc’g to the gal at Walgreens. This will not last me until end of March, so I have to consider other options, as well. Meanwhile, the old Cytomel pills expire in February!! I have no problem taking them for a while post expiration, but this is all a mess.
c. 5 mcg are back on the shelves. I would have to take 10 pills a day plus maybe 1 or 2 more to compensate for the extra filler in so many pills- thus could cost me, after the piddling 20% insurance coverage, $800 or more per month. This is the most expensive option, but I may need a back-up.
Why the disruption in supply?
Pfizer Customer Rep said that there is some “change in ingredient(s) supplier.” The exact details are considered private “corporate information” LOL. Actually this is CRUCIAL info for docs and their patients. I will consider moving to a different company’s product since there are going to be changes and the timing is not certain or shared with patients.
i. If even one ingredient is being made in a new facility, the formula is different, and may not perform the same. For those of us who depend on something in its exact form, WE NEED TO KNOW THIS.
ii. Since we depend on this product for our health, we need to know the TIMING of this, and whether they DEFINITELY will resume producing this medication.
iii. Reasons for disruption are factors we and docs should know for deciding whether to change to a different version.
My theories about why this happened
1. Price hikes led to removal from formularies (official list giving details of prescribed medicines) led to limited insurance coverage, rather than co-pays, which then reduced demand (I tried to switch away for this very reason, but nothing worked, so I came back despite the insane expense). For example, the first approx. 14 years of taking Cytomel, it was covered by my co-pay. Then the list price went way up A LOT (why? KEY INFORMATION NEEDED BY US as patients who NEED T3). From that point on my insurance only gave me back 20%, so I was paying almost $500/month. When I gave upon on alternatives and went back to Cytomel, I was on T3-only to reduce RT3, so I was actually able to take fewer pills (2 x 25mcg vs. 4x 5mcg in the past), which reduced the cost a bit as it seems to be more based on # pills than #mcg. It is likely that many switched to generics or compounded versions to save money when the price was hiked. The reduced demand would make it less profitable, and harder on the production facility.
2. Cost of raw materials went up? Raw materials in short supply??? How they are looking for alternatives?? If this is the case, the company should be telling us this!!
3. Raw materials supposedly made in Puerto Rico facilities taken out by Hurricane Maria and now unavailable??? If so, Pfizer should be telling us this.
4. 5 mcg are likely the most popular as they are most common usage is to supplement a T4-only synthetic or a Natural Desiccated Thyroid (NDT)) with a little bit of T3. For example. I used to take 150 mg Tirosint (gel-based T4, also very expensive now, so I switched) plus 20 mcg Cytomel. However, when my RT3 went way up (after I was on generic and compounded T3!), I had to take A LARGE amount of Cytomel for T3-only therapy: my theory is that the numbers of people taking such high doses of T3 and/or doing (temporary) T3-only therapy are not that high or constant, so there is is not much demand for the 25 mcg or 50 mcg pills of Cytomel.
Sorry about this long saga, but I hope to help others.
If anyone has any further info about any of this,. or any suggestions, or any relevant experiences, I am very interested.
Please post!!! ~Jacqueline
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From Janie: as we wait for more information as well as your comments on this important Guest Blog post, here are links to help you in your quest to feel better..
1) Want to order your OWN labwork because you like being self-directed? Go to this page and scroll down to see the icons for different lab facilities.
2) Have a high RT3? Check out this page.
3) Learn what patients have learned in the use of T3-only.
4) See the different brands of T3 in pink on the Armour vs Other Brands page.
5) Have what looks like a optimal free T3 (top part of range or even higher) but you still feel awful? You may be pooling due to a cortisol issue that needs discovery with a saliva test. Once you get your saliva results back, DO NOT go by their graph. Go by this page.
6) Here’s info on the different thyroid medications: https://stopthethyroidmadness.com/hypothyroid-medications/
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