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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/

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. 

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UH OH–Naturethroid and WP Thyroid Shortages and what to do

NOTE: this post starts with what was going on in September 2017, and there are updates to it at the bottom of the article. If you didn’t know about this, you need to sign up for blog post notifications at the bottom right of the STTM website.

UPDATE: since the new Naturethroid has come out in 2018, there have been an awful lot of patients reports in seeing their hypothyroidism return, with labs to prove it. It has not been pretty.

Feeling panicked or frustrated by the shortages of two particular brands of Natural Desiccated Thyroid? Let’s take a look at all of this and what you can do.

Brands of NDT

Nature-Throid® and WP Thyroid® are two brands of NDT produced by the U.S. pharmaceutical RLC Labs. (There’s even an older third brand occasionally still foundable: Westhroid, which is said to be exactly the same as Naturethroid, though in less strengths than Naturethroid provides.)

As mentioned in the most sought-after patient-to-patient hypothyroid book on the market, RLC (formerly Western Research) has been around a long time–since the early 1930’s. And it appears they aren’t about to end that long tradition of their existence.

Why the shortage

RLC explains that the shortages are due to “significant upgrades to our facility and equipment”. And though that has created great inconveniences to and frustrations by users of their products, it’s clearly stated by RLC to be a temporary issue, though the resolution may take awhile.

Steps to consider in the meantime

  1. Writing the prescription differently First, make sure you doctor writes your prescription in a way that you are able to get any other brand of NDT your favorite pharmacy provides. One way is for him to write simply “desiccated thyroid”, then the amount you use, instead of mentioning a brand.
  2. Call around to different pharmacies. Patients are reporting that some still have their supplies of Naturethroid or WP, and especially WP. See if that makes you lucky.
  3. Consider other NDT brands. For example, NP Thyroid by Acella has been proven by patients to be a solid and well-made Natural Desiccated Thyroid, similar to the old version of Armour. And there are no shortages of NP.
  4. Compounding pharmacies Though more expensive, these versions of pharmacies are a way to have your NDT made according to you or your doctor’s specifications, especially fillers used.
  5. Using synthetic T3 with synthetic T4 If the two synthetics are used, patients have learned that their goals end up being the same as Natural Desiccated Thyroid as far as lab results with the free T3 and free T4, plus removal of symptoms, as well as not going by the TSH lab test. To see different brands of synthetic T3 like Cytomel and others, go here and see them in pink.

Why a pharmaceutical might be doing an upgrade

The U.S. Food and Drug Administration (FDA) states they inspect pharmaceutical manufacturing facilities worldwide, based on standards outlined by the Current Good Manufacturing Practice (CGMPs) regulations. This is especially true for those facilities which manufacture active ingredients like “thyroid tissue”, as well as the finished pill or liquid product from the contained ingredients. They state “inspections follow a standard approach and are conducted by highly trained FDA staff.” 1

Says the FDA:

CGMPs provide for systems that assure proper design, monitoring, and control of manufacturing processes and facilities. Adherence to the CGMP regulations assures the identity, strength, quality, and purity of drug products by requiring that manufacturers of medications adequately control manufacturing operations. This includes establishing strong quality management systems, obtaining appropriate quality raw materials, establishing robust operating procedures, detecting and investigating product quality deviations, and maintaining reliable testing laboratories. This formal system of controls at a pharmaceutical company, if adequately put into practice, helps to prevent instances of contamination, mix-ups, deviations, failures, and errors. This assures that drug products meet their quality standards.2

If you really want to get detailed information on CGMPs, here you go: https://www.fda.gov/Drugs/GuidanceComplianceRegulatoryInformation/Guidances/ucm064971.htm

Stop the Thyroid Madness has not seen anything stated from RLC that this is the reason for the upgrades causing the shortages. But it will be interesting to see what the Naturethroid and WP Thyroid tablets look like, and act like, after this upgrade and catchup.

UPDATE as of OCTOBER 10th, 2017:

Heard the following from a gal who called RLC Labs: They have been working on the one grain tablets, and stated they should be finished in about two weeks. Then they will be mass shipping to pharmacies after that time around the first of November.

UPDATE as of November 2nd, 2017

From RLC Labs:

We are happy to announce that Nature-Throid 1 grain (65 mg) is shipping! Shipping for this strength began a few weeks ago and it should be hitting pharmacy shelves soon, but that can be variable; some locations may even already have it stocked and available. If your usual pharmacy is unable to fill your prescription, we recommend contacting other local pharmacies to see what they have in stock. You can also try any of the mail-order pharmacies listed on our website for a potentially faster turnaround. Strengths are being prioritized based on highest demand, starting with Nature-Throid 1 grain, and we are releasing in all counts. The next strength to be released will be Nature-Throid ½ grain (32.5 mg), and we will post here when it starts shipping. We are unable to provide any updates around WP Thyroid at this time, but will share them and any other new details on this page as soon as they are available. Every effort is being made to have all strengths stocked and available as quickly as possible while still maintaining our strict quality standards—the industry allows for a monograph discrepancy of +/-10% between T4 and T3, but WP Thyroid and Nature-Throid are not released outside of +/-2%. Patients are and always have been the top priority at RLC Labs, and we are literally working day and night to get back to our usual pace as quickly as possible. Your understanding and continued support are greatly appreciated as we do our best to get back to our usual pace. *Please discuss all health-related questions or concerns, including those about symptoms, with your physician.

UPDATE as of January 15, 2018

https://getrealthyroid.com/product-availability.html

In the meantime, NP Thyroid by Acella is a good one to switch to. You may have to adjust it for your own needs.

MORE INFORMATION:

  • Can Hashimoto’s patients do well on Natural Desiccated Thyroid? Find out here.
  • Is it true that thyroid cancer patients should avoid NDT? See this.
  • How do I use Natural Desiccated Thyroid? See what patients have learned here.
  • What if I want to use synthetic T3 instead? See this.
  • Where do I get the Stop the Thyroid Madness books I hear so much about? Right here.

 

 

1. https://www.fda.gov/drugs/developmentapprovalprocess/manufacturing/ucm169105.htm
2. https://www.fda.gov/drugs/developmentapprovalprocess/manufacturing/ucm169105.htm
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About Quinoa; Mistakes made on T3-only; Thyroid Patients and West Nile Virus

“WHAT IS THAT??”

As a thyroid patient who went to hell and back thanks to 20 years of a lousy treatment by allopathic medicine, I care about my good health and what I eat. So I attempt to balance my eating sins. And when I was recently at a salad bar, I couldn’t figure out what a particular bowl of food was, sitting next to mixtures of fruit, pastas, etc.

It looked like “frog eye salad”, which is made up of teeny tiny b-b size pasta and sweet fruits. But this had tomatoes in it. And the small round things had a thin white line around them. Were they fish eggs??

Turns out its a high protein, higher fiber whole grain called Quinoa (pronounced keen-wa), and is loaded with nutrients, including the minerals iron, zinc, and selenium, plus vitamin E and lysine, and all essential amino acids. I got a scoop and I was impressed.

And voila….if you need to be gluten-free, this grain gets the mark! I plan on buying some at my local health food store for an occasional hot breakfast cereal (as I suspect my husband would do better avoiding gluten thanks to frequent digestive issues), besides strongly recommend it to my husband’s niece, who badly needs to go gluten-free to lower her high inflammation levels.

Don’t feel the need to avoid gluten?? This still looks like a great grain and food to become familiar with, which I’m going to do! But a word of warning: it’s not low carb. So like any carb you intake, you’ll want to eat it in moderation.

KEY MISTAKES IF YOU ARE ON T3-ONLY, says a lot of patient experience

Though ten years of strong patient experiences show that natural desiccated thyroid gives the best results for thyroid disease, some thyroid patients have to be, or choose to be, on T3-only. It’s definitely a far better treatment than the lousy T4-only treatment with Synthroid and other brands.

And along the way, we’ve figured out some mistakes we may be making when using T3-only:

  1. Dosing rigidly every certain amount of hours  When patients were first learning about using T3-only (which requires more multi-dosing at first than does natural desiccated thyroid), we thought it was a good idea to dose rigidly about every 4-5 hours or so, thinking that T3 would peak about 4 hours after taking the first dose, then make a fall, and you’d then need to replenish your levels. We were wrong with that rigidity.It can be very individual when one needs a dose of T3. Some might need another dose of T3 in three hours after taking the first one due to a higher metabolism. So if they go longer, they put themselves in an increasing hypothyroid state. Another person might be a slow metabolizer and only need their next dose in 5 or 6 hours. So if you take it too soon, you put yourself in the direction of a hyper state.Turns out you need to be dosing  T3 when your body tells you it’s time you need it! How to know? Your signs and symptoms. Look for clues that you need your next dose, like a rising heartrate or blood pressure, depression, fatigue, or any hypothyroid symptom unique to you. Notate that on paper, then you’ll know to take your T3 right before that time the next day. It might take a few days of experimenting to figure out when your ideal dosing times are.
  2. Multi-dosing T3 too many times during the day As patients, we used to think that we need to dose T3 up to four to fives times a day in smaller doses. But with our new knowledge about T3, several patients have noted noted that moving dosing to 2-3 times a day, and thus in larger amounts each time, has resulted in better treatment of their hypothyroid state, especially with better cortisol levels.
  3. Thinking that different brands of T3 are equal  Unfortunately, some brands of T3 are weaker than others. And occasionally, some batches of a better brand may be bad due to heat exposure.  Generally, patients have reported Cytomel to be of a quality and consistent strength. Cynomel has been reported as equal in strength, but lately, patients have found some batches to be weak and are reporting this to the company. UK’s Liothyronine by Goldshield has been reported by patients as weaker in strength all the time.  All in all, Cytomel has received the most positive scores.

Using T3 all day while doing the T3 Circadian Method (T3CM) for your proven adrenal fatigue?? As your adrenals kick back in, you may notice that you 1) need to space your T3 farther apart, and 2) that you will need less T3.

WEST NILE VIRUS IS BACK LIKE A VENGEANCE: WHAT YOU AS A THYROID PATIENT SHOULD BE DOING!

Found out that a cousin of mine, who’s a father of two young children, found himself with West Nile Virus several days ago. I got West Nile about 5 years ago, as well. For many of us, it’s like the WORST flu you ever had, and you can take a few weeks to get over your post-illness weakness.

And since having a compromised immune system (as struggling hypothyroid/adrenal patients can have) makes one more vulnerable to the virus effects, I can see it being imperative to be on immune-supportive herbs right now, besides putting on some kind of mosquito repellant of your choice. I also read about Lomatium root, which is supposedly very anti-viral. I would talk to your local health food/supplement store for recommendations.

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Ten years reveal what works with thyroid treatment, plus healing adrenals without HC!

This year, 2012, marks the tenth year I started working with and learning from patients after desiccated thyroid turned my life completely around. It all began with the creation of the Yahoo group Natural Thyroid Hormone users–a still-active group. And the next few years of “patients sharing with patients” provided incredible information. 

And when it comes to the variety of thyroid med treatments, here’s a general summary of ten years of patient experience:

  1. T4-ONLY MEDS: do not work well for a large body, if at all, leaving patients with continuing hypothyroid symptoms in their own degree and kind. Those who feel they are doing well on T4 end up seeing increasing symptoms of a poor treatment…eventually (or don’t recognize their symptoms of a poor treatment). By observation, more than 50% of those on T4-only end up with screwy or debilitating adrenal function, low iron, low Vit. D and more side effects of a poor treatment. Some put on T4 (because of a transient high TSH lab test result) probably never needed any thyroid treatment in the first place, like my sister-in-law.
  2. SYNTHETIC T3 WITH SYNTHETIC T4: a definite step up from T4-only in improvement of symptoms. Unfortunately, though, we see more and more doctors prescribing this rather than breaking through their ignorance and prescribing natural desiccated thyroid with its T4/T3/T2/T1/calcitonin, because all they know about is synthetics.
  3. T3-ONLY: another good step up from T4-only. Patients note they have to be diligent in taking their multi-dosed T3, having no T4 to rely upon for conversion. Also used temporarily by those who want to lower high RT3 while correcting the causes.
  4. NATURAL DESICCATED THYROID: gives the best results, say many patients over the past ten years who tried the synthetic T4/T3 route or others, since it gives exactly what a healthy thyroid would give (T4, T3, T2, T1 and calcitonin).  There just appears to be something synergistically powerful when you give yourself exactly what your own thyroid would be giving you.  If you have issues, it’s usually due to a cortisol or iron problem, which need to be corrected. More info here.
  5. COMPOUNDED THYROID:  Be careful, say experienced patients, when your doctor prescribes this! It’s far more expensive, and the less expensive prescription pill forms of NDT work well anyway. Also, some patients have been shocked to find out that what they were taking was compounded synthetic T3 and synthetic T4. Beware, say informed patients, when your doc says “it’s specially formulated for your particular needs” (for most, this is a mute point. The prescription pills for fine.) or “time-released is good” (Not, say patients, who found it runs out far too quickly).
  6. OVER-THE-COUNTER THYROID SUPPLEMENTS:  Just a few years ago, patient experience found them to be weak substitutes for prescription desiccated thyroid meds. But the last few years saw the introduction of good OTC products which patients report have done them well! ThyroGold brought out by the late Dr. John C. Lowe is one, even if quite strong and the need to pour out the contents and divide.
Of course, there can be less common ways to use the above. For example, those with peripheral tissue resistance can be on high doses of desiccated thyroid (to get the benefits of all five hormones) along with added T3. And there are more.
READ the stories of two real people who found out the hard way that Synthroid can end up biting you in the butt later: DEANNE and GENE.

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YES VIRGINIA, YOU CAN HEAL YOUR ADRENALS WITHOUT USING HC!

And just as patient experience has revealed great information about a variety of thyroid treatments, the same patient experience is breaking ground with adrenal treatment as I write this! Namely, a small but growing body of patients have been doing the T3 CIRCADIAN PROTOCOL FOR ADRENALS, as first discovered by UK patient and author Paul Robinson, and it’s working!

And even more exciting? It’s working with natural desiccated thyroid, not just T3!

Now of course, Paul doesn’t feel that “healing” is the right word. He prefers that it’s “promoting better adrenal function”.  He’s right. But “healing” fits when one has gone from the misery of low cortisol, to the glee of better adrenal function….and achieved from just several weeks of doing the protocol correctly, as compared to a few years with the use of HC and its problematic side effects.

To read more about this exciting new discovery, go here.  You’ll also see the link to order Robinson’s book, of which Chapter 16 covers this use of T3 in promoting better adrenal function.

 

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T3 to heal adrenals, Selenium, liver–all important info for thyroid patients!

Though this post was written in 2012, it has been updated to the current day and time and it still applicable. Enjoy!

HOW T3, DOSED A CERTAIN WAY, CAN REVERSE YOUR ADRENAL FATIGUE!

UK’s Hashimoto’s patient Paul Robinson has been a successful T3-only treated patient for more than 13 years, especially because he never did well on either synthetic T4, nor on the combination of T4/T3. And he learned so much about himself that he compiled all the information on T3 dosing in his book called Recovering With T3: My Journey from Hypothyroidism to Good Health Using the T3 Thyroid Hormone.

But what I especially find interesting is how he used T3 to cure his flagging adrenal function rather than HC (hydrocortisone).  And here is a short summary of key points. He calls this The Circadian T3 Method, aka the CT3M.

  1. Most of the day’s cortisol is made in the last four hours of sleep, which means your adrenals work their hardest during that time. And like any cell in your body which need T3 to function well, so do your adrenal cells…especially during the time they work the hardest.
  2. With the above in mind, it made sense to Paul that if adrenals are struggling with low cortisol, they clearly need T3 in that early morning 4-hour window in order to function better. How did he do it?  He moved his first T3 dose to one hour before he would normally wake up, held it for a few weeks to see the results, went earlier another half hour, held it for a few weeks to see the effect…and so on. He obtained a lot of data to ascertain what was happening–urine cortisol, blood pressure, pulse, etc. He found that the time which gave his adrenals the biggest boost, and thus better function, was 3 1/2 hours before he normally wakes up.  But he feels that others might find that anywhere in the first three hours of that four hour window, and it’s important to move slowly within that area to find the right time for you based on data.
  3. This protocol needs certain supplements, which include high potency B complex, B12, Vit. C, Vit. D and a good multi mineral. He goes into detail in his book.
  4. This protocol would not work if someone has Addison’s Disease, Hypopituitary or Diabetes…and may not work if you have pre-Diabetes blood sugar issues. It’s blood sugar in the cells that reacts positively with T3.

There is much more detail than the above. And Paul makes it clear that this treatment for adrenal fatigue and proven low cortisol should only be done in your relationship with your doctor. You can read more here on STTM.

UPDATE: many patients have reported that though the CT3M did wonders bringing up the morning cortisol, it didn’t help afternoon cortisol at all, and for some, didn’t help noon’s low cortisol. Yes, there are some who feel it’s helped all day, but also a large body who said it only helped morning. So we concluded that though it’s great for that low morning, you may have to use other supports for other low cortisol times. Also, the CT3M is excellent to help get off HC! Many are off in a month or less!

SELENIUM, EVEN WITH HIGH RT3, IS A MINERAL YOU NEED!

Check out what thyroid patient Cheryl Alvey has put together about selenium. This is a masterful page!

WHY THYROID PATIENTS NEED HEALTHY LIVER FUNCTION

What happens if your liver isn’t healthy?  Transportation is less optimal, and the deiodination type 1 will change to type 3, meaning T4 will convert to excess RT3! And guess what can make your liver unhealthy? Continued hypothyroidism, which happens to all too many who are on T4-only medications, or those left undiagnosed due to the TSH. Hypothyroidism is worsened with adrenal problems, and low iron.  And liver function can become unhealthy or stressed if you eat poorly  You can read more about all this here.

In the meantime, what can one do to promote better liver function? Milk thistle is one highly recommended way by many (use Milk Thistle supps from the seeds to avoid estrogenic affect). Also look into dandelion root /leaf, Sassafras, Burdock, Goldenseal and Yellow Doc root, Red Clover and Echinacea root. Ask someone knowledgeable at your local health food store.

PATIENT YOU-TUBE STTM VIDEOS

See thyroid patient Sam Aliyev’s latest YouTube video.  If you do one about the message of STTM, let me know and I’ll post about it.

**Has STTM benefitted you?? Want to Pay It Forward? Go here.

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