Thyroid mistreatment using T4 medicine and hypothyroidism misdiagnosis are too common. Find out the truth about this ongoing scandal. STTM's mission is to spread the word about worldwide reported patient experiences and wisdom concerning better thyroid treatment and more, to help you in working wiser with your doctor.
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 off this,. or any suggestions, or any relevant experiences, I am very interested.
Please post!!! ~Jacqueline
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.
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.
NOTE: if you are reading is via the email notification you signed up for, DO NOT REPLY TO THE EMAIL. It will not be received. If you want to comment, CLICK ON THE TITLE of this blog post, then scroll down to comments.
RLC Labs, the makers of Naturethroid, WP Thyroid, and what used to be called Westhroid, has been around a LONG time. All are natural desiccated thyroid. meaning they are made from porcine powder and contain all five thyroid hormones, T4, T3, T2, T1 and calcitonin.
And RLC is correct in promoting themselves as the “pioneer and industry leader in the field of hypothyroid treatment.“1 They started out in the 1930’s, even though the pharmaceutical name was different for awhile, aka Western Research Labs/Laboratory.
But in 2017, thyroid patients started to see both Naturethroid and WP Thyroid slowly or quickly run out in their pharmacies and on websites, and achieve backorder status. That problem persisted into 2018.
What caused this change? Patients reported that RLC stated it was due to needed machinery updates. But??
Finally, in 2018, loyal patients excitedly reported the slow return of Naturethroid natural desiccated thyroid to their pharmacies.
But with that return came a growing body of reports from patients in many groups, including the Stop the Thyroid Madness Facebook page, that they were seeing a major return of their hypothyroidism on the “new” Naturethroid…rising TSH, low free T4, low free T3, erratic frees and TSH, fatigue, depression, dry skin or hair, hair loss, anxiety, lowering of iron or B12 or Vitamin D, stiff joints, pain, achiness…on and on.
And now come some reports of an adrenal problem after being on the new Naturethroid
What are adrenal problems? It’s finding oneself with either low cortisol, high cortisol, or mixed highs and lows–any can be the result of the adrenals trying to kick in due to the return of hypothyroidism on Naturethroid. Some proved it by doing a saliva cortisol test,.
Thus, as they have been moving over to NP Thyroid by Acella2, or Armour second, or the two T4/T3 synthetics or T3….they have problems raising any of them, or problems being on the same amount. They then blame the different NDT, T4/T3 or T3-only, which instead is just the latter now revealing the cortisol and/or iron problem!!
But I feel good on the new Naturethroid!
Yes, there have been what looks like a minority who state they feel “good” on the “new” Naturethroid. But what we noticed over time is that a certain body of those came back and said they started to feel the problems creeping up on them. Here’s the string to talk about your experiences with the “new” Naturethroid:
The end of 2018, especially December and when I am first writing about this, is where reports started trickling in that WP Thyroid was making a comeback in certain pharmacies. Questions about it have surfaced, such as “Is it going to be lousy like Naturethroid has been for so many of us?”, “Can we trust RLC?” and “Do I dare try it when I’m now doing well on NP Thyroid or Armour?”
One person reported directly to me that the bottle looks the same, the label looks the same, the ingredients look the same.
What we want from you!!
This will be YOUR STTM blog post to comment on your experiences with the “new” WP Thyroid…now and the longer you stay on. Let us know if you note any differences in the pills, in the smell, in the results. Let’s share patient-to-patient and learn from each other…which is STTM’s purpose!!
Note: by using the word “new” in front of Naturethroid or WP, it is just a reference to coming out again in 2018.
Probably most people have heard about “drug recalls”, but may not know the ins and outs about recalls.
What is a recall?
I personally think the best definition of a drug recall comes from the Saunders Comprehensive Veterinary Dictionary1: a voluntary action of removing a product from retail or distribution by a manufacturer or distributor to protect the public from products that may cause health problems.”
Note the word “may” cause. Recalls can also be about risk, not just about definite adverse consequences.
So a recall is voluntary by a pharmaceutical?
It definitely can be. And it can also be at the request of the FDA. Either. From the FDA2: Drug recalls may be conducted on a company’s own initiative or by FDA request. FDA’s role in a recall is to oversee a company’s strategy, assess the adequacy of the recall and classify the recall.
What are reasons for a recall?
WebMD3 defines five potential reasons:
1) it’s a hazard to your health
2) it’s mislabeled or poorly packaged
3) it’s potentially contaminated during production or distribution
4) it’s not what it says it is
5) It’s poorly made, effecting it’s quality, purity, and/or potency
For #3 above, note that the potential contamination may be harmful OR non-harmful.
Are recalls common?
Believe it or not, yes! A 2017 article in the Journal of the American Medical Association4 stated that 1/3 of all prescription meds have been recalled due to “safety events”.
If something I take has a recall, what do I do? Can I get my money back?
Yes. But you do need to call the pharmacy from which you got it, first. They have to get official notification of the recall before giving that refund.
Shouldn’t I get a replacement for my prescription medication before taking it back?
Call your doctor so he or she can prescribe a different one before you return your recalled medication. That way, you can pick it up at the same time you return your recalled medication, say experts.
Now let’s move to a recent recall of one particular natural desiccated thyroid medication by Westminster Pharmaceuticals.
Westminster came out with its own natural desiccated thyroid (NDT) product, considered a generic version, in late 2017. You can read more about their NDT product on Stop the Thyroid Madness’s page which lists brands and ingredients, here.
Westminster voluntarily issued a recall of their NDT in August 2018 due to “risk of adulteration”. See below.
Why did Westminster voluntarily issue a recall?
The recall states it was done “as a precaution because they were manufactured using active pharmaceutical ingredients that were sourced prior to the FDA’s Import Alert of Sichuan Friendly Pharmaceutical Co., Ltd., which as a result of a 2017 inspection were found to have deficiencies with Current Good Manufacturing Practices (cGMP). Substandard cGMP practices could represent the possibility of risk being introduced into the manufacturing process.”
It’s important to point out the words “possibility of risk”. That is different than a definite negative outcome as having occurred. But time will tell.
And if you really want to get into detail about why the FDA issued an alert about Sishuan Friendly Pharmaceutical, the maker of desiccated thyroid powder that Westminster was using, it’s all here.
How do I know if my particular bottle of Westminster’s NDT is part of this recall?
The recall notice lists many lots. You’ll need to call your pharmacist to see which lot your bottle came from. But it does appear that most of Westminster’s NDT has been recalled by the long list of lot numbers.
Has anyone been harmed by their use of Westminster’s NDT?
In the 2009 recall wording, it was stated “To date, Westminster Pharmaceuticals has not received any reports of adverse events related to this product.”
Is this the first time that any thyroid medication has been recalled?
Nope. For example, Levoxyl, a T4-only medication, was recalled in April 2013. Synthroid, another T4-only medication, has been recalled numerous times due to issues like subpotency and the same failure to follow good manufacturing practices.
Is 2018 a year of Natural Desiccated Thyroid mishaps??
Boy oh boy, it sure has been.
First, RLC’s Naturethroid and WP Thyroid ceased production in 2017, and Naturethroid only started creeping back in 2018. But sadly in 2018, there seem to be quite a few patients reporting it to be far weaker than it used to be and finding that out the hard way with the return of major hypothyroid symptoms. Some are trying to raise it to see if they can regain their former feel-goods; others have been switching to other brands.
Then comes this with Westminster’s NDT. What a mess.
Is there a conspiracy at foot to take our NDT away?
No, it does not appear to be conspiracy.
My doctor claims these recent issues prove that desiccated thyroid is unreliable and I should use Synthroid. What do I say?
You say “What is proven by millions over the years is that T4-only like Synthroid is the unreliable way to treat hypothyroidism”.
So where do I turn now?
People have been moving over to NP Thyroid by Acella, or Armour. You can also choose to have your NDT compounded. Or move to synthetic T3 with synthetic T4. But the goals are the same, which for years includes seeking a free T3 towards the top part of the range, and a free T4 midrange. Both. And to achieve the latter, it’s still important to have the right amount of cortisol and iron, we’ve learned repeatedly, because if you don’t, you can see problems. Too often, people blame their problems on NDT, when in reality, it’s what NDT or T3 reveals that is the problem.
It is common for hypothyroid or Hashimoto’s patients to get low iron
Why? The most common reason is being on T4-only like Synthroid or Levothyroxine. The latter leaves most with lingering hypothyroidism, sooner or later. Thus, continued hypothyroidism lowers one’s stomach acid, and lowered stomach acid means you aren’t going to absorb nutrients well. So iron can fall, as can B12, Vitamin D and more.
The second most common reason is being underdosed on Natural Desiccated Thyroid (NDT) or T3 for a long period of time…usually due to a doctor who goes by the TSH or doesn’t understand how to get you optimal.
The third most common reason? Being undiagnosed for awhile, once again due to doctor’s clueless reliance on the lousy TSH lab test. The TSH can be “normal” for years before it rises high enough to reveal your thyroid problem.
But before I get into the topic of this post, please know that the vast majority of thyroid patients with inadequate levels of iron have successfully raised it with the right amount of iron supplements and for years! It’s all explained on the iron page.
Your results have NOTHING to do with just falling anywhere in those ridiculous ranges. Compare to above link!! It’s serum iron you treat.
And if ferritin is high with lower serum iron, that means inflammation you’ll need to treat and get DOWN, otherwise taking iron will raise your high ferritin even more.
How I found out about a new way other than iron supplements
I do coaching calls. And one call in particular was impressive! This young man raised his serum iron from 77 to 130 without taking a single supplement of iron. How did he do it? With nothing more than lactoferrin. He was also taking astaxanthin, but I’ll explain later .
What is lactoferrin?
Lactoferrin is a protein, also called a “glycoprotein” because it has both a carb and a protein. Lactoferrin is primarily found in a mother’s breast milk at the beginning of nursing and it’s at quite high levels–seven times higher than it will be later, or in regular milk1. And what does lactoferrin do for infants who breast feed, as well as adults who use it as a supplement? It plays a fabulous role in enhancing your immune response, making it antibacterial, for one, plus anti-viral, anti-parasitic and even anti-fungal. Lactoferrin is also stated to be anti-cancer, and also known to promote bone health.
And for all of us, lactoferrin envelopes (binds) iron, constraining the iron from feeding a bacterial or viral infection, from feeding candida, from being too toxic in our bodies, or causing too high levels of free radicals! But there is evidence that it also helps raise low iron.
Some ask about the lactose in lactoferrin since it comes from a mother’s milk–it’s very very low.
So has research also shown that lactoferrin supplementation can raise iron levels?
Here’s a 2006 study of 300 women, part taking lactoferrin and part taking just iron supplements, and the women taking lactoferrin saw a definite rise in their serum iron as did those taking supplements, but the former had even better results! It was 100 mg lactoferrin twice a day vs 520 mg once a day of ferrous sulfate. https://www.ncbi.nlm.nih.gov/pubmed/16936810
And here’s a 2009 study showing that with one group using iron supplements and another group using lactoferrin…the outcome was the same–each had raised their iron status comparably! results! https://www.ncbi.nlm.nih.gov/pubmed/19639462
In 2014, a study with pregnant women showed the same as above–that transferrin did the job in raising iron as much as iron supplementation and with fewer potential side effects. Transferrin also lowered inflammation. https://www.ncbi.nlm.nih.gov/pubmed/24590680
And there are more studies which scientifically validate that power of lactoferrin to bring up iron from the iron content in foods you eat. Most studies show participants taking 100 mg twice a day, to equal a total of 200 mg.
How have we used lactoferrin before?
Stop the Thyroid Madness–the mothership of patient experiences and wisdom rather than empty strong opinion, has always mentioned using lactoferrin with your iron supplementation to envelope the iron and carry it around, besides protect you from the toxicity of iron. That is especially true if your liver isn’t making much transferrin as revealed by a lower TIBC–an indirect measure of your liver’s ability to make transferrin. Transferrin is in the same family of proteins as lactoferrin, thus lactoferrin supplements are ideal.
But now we have evidence that lactoferrin ALONE may do the trick. And guess what…there are even lactoferrin receptors in your body.
Will lactoferrin supplementation do the trick for everyone in raising low iron?
We don’t know yet. We need more patient feedback on their experience with it. But as mentioned above, there is evidence both in experience and research that is a bit exciting and interesting. And you probably need to take it while eating foods rich in iron, too.
Which lactoferrin should I get if I want to try raising my confirmed low iron?
Most brands seem to be fine; most lactoferrin supplementation is shown to be safe; they come from bovine sources. But I would choose a brand you have read about and/or trust.
There is a brand of lactoferrin by Life Extension that says it’s the apolactoferrin form, meaning iron depleted. Regular lactoferrin in most other brands do contain a little iron which is not depleted. I would personally go with other brands, not Life Extension, but that’s me.
What about the astaxanthin mentioned above?
If you have inflammation, iron will tend to go high into storage (aka ferritin), instead of supplying your serum iron levels. For women, you can suspect inflammation if your ferritin is nearing 100 or much higher, and for men, if you ferritin is going above the 130’s. With either men or women, your serum iron will be lower than it should be if ferritin is revealing inflammation!!
And it’s your serum iron levels you are supposed to be treating, NOT ferritin… unless you have inflammation! Thus, taking inflammation lowering supplements are important, as lowering inflammation is the only way to raise low serum iron! Astaxanthin2 is one (such as a minimum of 12 mg and possibly twice a day?), but so is curcumin twice a day (in higher doses than bottles say) or other anti-inflammatory supps of your choice. Take the time to check out this page–we all have to be educated to get well: —-> http://stopthethyroidmadness.com/inflammation
1. We now have science showing the efficacy in using lactoferrin to raise low serum iron levels, plus solid patient experience in doing so, as well.
2. Lactoferrin supplementation may prevent you from getting low iron in the first place.
3. If you are someone who has serious gastrointestinal issues with taking iron to correct low serum iron (not low ferritin–it’s about correcting low serum iron), this is a new possibility to explore. Even if you have no issues taking iron, the possibility that taking lactoferrin can raise iron is interesting, besides the fact that it also improves your immune function, is anti-viral, anti-bacterial, anti-fungus, anti-parasites and anti-cancer! Wow!
4. If you have low serum iron with high ferritin, the latter points to inflammation. Important to get that inflammation down to help raise your serum iron, even if you use lactoferrin.
5. Studies above used 100 mg twice a day to equal 200 mg daily. If you have gained any experience with using JUST lactoferrin to raise iron, please let us know how long it took you, how much lactoferrin you used, and what your results were.
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