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 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.

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. 

Important note: STTM is an information-only site based on what many patients worldwide have reported in their treatment and wisdom over the years. This is not to be taken as personal medical advice, nor to replace a relationship with your doctor. By reading this information-only website, you take full responsibility for what you choose to do with this website's information or outcomes. See the Disclaimer and Terms of Use.

30 Responses to “Guest Post by Jacqueline about the availability, or not, of T3-only meds”

  1. Hugh Hamilton

    Have what looks like a optimal free T3 (top part of range or even higher) but you still feel awful?

    This may be due to thyroid hormone resistance, also known as Impaired Sensitivity to thyroid hormone. The treatment with very high doses of T3 to overcome the resistance was developed by Dr John Lowe.

    Reply
  2. Tara

    I live in Canada and sourcing Cytomel has been a nightmare. Every pharmacy distributor is claiming that they are out of stock of both the 25mcg and the 5mcg. My Dr. ended up sending me to a compounding pharmacy, two hours away, with the intention of having the product compounded for me. They called to tell me they had two bottles (of 100) pills on their shelves. I pay $460 CDN for 200 pills of 5mcg. I’m taking 6.5 pills of those a day.

    I went back into the pharmacy this week to request they compound me a refill. They had a bottle of 25mcg pills that will be expiring next month. I bought them. They told me that I might make it to Pfizer’s restocking of the product, but if not, I will have to pay even more for restocking.

    I am very sensitive to gluten and am wondering if the inflammation I’ve been experiencing is somewhat due to the gluten in Cytomel. We don’t have access to generic T3 in Canada. In fact, the only time a compounding pharmacy can make this product for me is in situations like the current one – when the licensed drug is unavailable. I’ve also only been on T3 since October and am in the process of titrating up so I’m hesitant to switch the medication before I have it dialled in.

    My Dr. does a blood test every 6 weeks. My T3 hasn’t moved from where it’s been for years – 2.5 pmol/L (give or take a smidge), but my T4 is bottomed right out and my TIBC/Transferrin and RT3 ratio are all very low. Argh. Too much going on to make sense of it all and this supply issue is truly heinous.

    Reply
  3. Lisa S.

    I just began slowly adding some T3 to my NatureThroid. I do the generic T3, however. I am so tired of medical folks worrying that taking T3 will cause atrial fibrillation. I guess if you took too much all at once, yes. But, if you slowly increase your dose, I think it would be safe. My physician trusts me and we are working together on increasing the generic T3. I sure hope I can lower my NatureThroid dose. I’m 105 pounds and geez, I’m on 3 grains of NatureThroid, haha! Yeah, no anemia or gut issues…just a broken thyroid.

    Reply
  4. John Billings

    This is my opinion, based on my experience as nurse practitioner and dealing with drug companies.
    I believe that the company that developed Synthroid knew that if attention were taken off T3, that there was a lot of money to be made in developing drugs to treat the symptoms of low thyroid. They sold the AMA on treating with T4 only and testing only the TSH and T4.
    I have been monitoring all the research articles involving T3 ever since I started my blog “T3 The Neglected Child”, and the research on T3 in North America has all but dried up. The only serious research with human subjects has come from outside of North America.
    The scarcity, price increase, reformulation of natural thyroid and liothyronine, and refusal of health insurance to cover the cost, are more of the same effort to stop treating the cause of the symptoms so profits can be capitalized with new expensive medications.
    There are doctors and health practitioners who want to treat the low T3, but it is becoming increasingly more difficult for them to do so.

    Reply
  5. nicholas cremato

    I think we need to spend some energy on finding out why our thyroids are not functioning correctly. Knowing to take an iodine supplement is not enough. If your doctor says “that’s not important” then you can bet it is!!!!

    Reply
    • Susan Siens

      I think Dr Brownstein is correct in saying that iodine deficiency has increased hypothyroidism dramatically. But Dr Barnes, writing at a time when iodine was still available in bread as a dough conditioner, estimated that 40 percent of the American population was hypothyroid, which was a genetic variation that permitted northern Europeans to survive cold and famine. I have hypothyroidism in my genetic makeup and had clear indications when I was quite young that it was present, but no doctor treated the fatigue I complained about (because I looked “normal”). I knew about Lugol’s solution in the 1970s and I firmly believe that if I could have found it — and I looked, believe me — I would have avoided severe infections that nearly killed me. I might still be taking thyroid medication, but probably not as much. What is your genetic background? I am German, English, Scots, Welsh, and have easily maintained weight on very low-calorie diets (don’t do dieting anymore — what a scam that is!).

      Reply
  6. machteld schrameyer

    Hi,
    I am so happy I saw this article about the T3 meds. this might be our lucky day.
    I am trying to make this as concise as I can.
    20 years ago when I was 50 I was diagnosed with hypo-thyroidism by a doctor who was an (german) internal medicine doctor and a homeopath in El Paso TX Now retired.
    He believed in T3 only and no Armour or anything like that.
    He put me on Cytomel and my life changed for the better.
    I moved away from the area and ended up with doctors who thought I was risking my life with T3.
    I was ignorant and went on T4 and my health was destroyed. Adrenal exhaustion and all the horrible things we all know about. I tried to go back on Cytomel but it did not agree with me and T4 and Armour were out of the question since anything containing T4 is poison to me now. In my despair I went back to El Paso about 5 years ago and the same doctor told me Cytomel was not as good as it had been and put me on what he thought is the purest form of T3 . I have been on that ever since and it is great.
    The brand when I got it from the doctor was at the time Paddock, later Perrigo and not that easy to get.Not everybody carries it. Last month I was in a total panic because Wallmart had carried it but suddenly said it was not available anymore. There is nothing else I can take and I was very worried. I started calling around to phamacies in my area. Hopkinsville KY and no luck until I called the pharmacy from the local hospital. The pharmacist said she did not have it either but actually called me back and said she had seen the exact product description chemically identical from a company Mayne Pharma, she gave me the NDC number 5186-321-01 this can be looked up by any pharmacy and regardless of which company they have on their supplier list, they will find the product.
    It has a new distributor and that is why I could not find it anymore. Pharmacists do not know much about the products and are not helpful in general. This lady however saved my life by calling back
    Wallmart carries it BUT they charge $90 for 30 pills of 25mcg while my non for profit pharmacy charges me $0.68 cents per pill. This is a difference of if you take 3x 25mcg of Wallmart $270 a month or your non for profit hospital pharmacy $61.00 a month.
    It is made in Germany and that is why my ( german) doctor in El Paso knew about this.
    The NDC number is different for different dosages I believe but you can all find it and replace your Cytomel with this pure T3 product.
    Liothyronine Sodium Tablets USP
    Mayne Pharma Greenville NC
    Made in Germany
    NDC51862-321-01
    Janie please put this information in a separate little article if you think it will help. Again I cannot tolerate anything else but this product, it is widely available in the US just compare pharmacies for the price.

    On a totally different note I would like to tell another story about my health which is a very promising and uplifting story.
    So after my health was spiraling out of control with the adrenal exhaustion and food allergies etc i was on the path of iodine (too sensitive )magnesium etc , the adrenal cocktail, keto diet glutenfree, dairy free nuts and bean free and always struggling even though it did get a lot better because of all of my endeavors. Meditation stimulating the Vagus nerve, halides toxicity etc etc.
    My life was quite bearable but I was alway afraid to go to sleep at night not knowing with what of shock I would wake up and do breathing exercises to stop the terrible heart palpatations and the fear of spiraling out of control again.
    My partnert had a kidneystone and is not into health at all but did not particularly want the surgery.
    I started looking for natural cures for him.
    I ran into this doctor who lives in Holland who was mentioned in a testimonial about the kidney stones.
    I started reading about her ( I live part of the time in the Netherlands) and found out about her that she is a medical doctor, a bio-chemist and a chinese acupuncturist. She has studied medicine at Vanderbilt in the US. She herself was very ill for the younger part of her life. That is why she studied medicine. Was not happy with what she learned and did bio-chemistry right after she became a doctor. About 30 years ago she developed an allergy test which is totall different from all other allergy tests. I will no try to explain but will give the website where you can read about her. Anyway her theory is If I understand it correctly that every one has certain foods they cannot process. If not processed it will not be eliminated either. This accumulates and causes diseases. She heals auto immune diseases and pretty musch anything which can go wrong. Parkinson, MS, Arthritis, diabetes type 1 and Thyroid problems.
    The fun part is there is only one test involved, blood can be shipped to the lab in the Netherlands and if so desired she can reset the immune system with acupuncture if one wants to travel to the Netherlands and your problems will dissolve over a period of time you are avoiding the substances you are allergic for.
    I have been on my diet since august of 2018 and feel like a different person. Being in Holland I did do the acupuncture. I have not had one heart palpatation since and am gradually going back to feeeling normal. Aches and pains have left me, rashes and inflammation has left me, I did a bloodtest recently with my regular doctor here in the US and he does not know me that well and red me the results. He skimmed the test and said this is good that is good, and your B12 is excellent. This is a miracle because my B12 has been a problem since I started testing these things about 40 years ago. Never have I not had a serious B12 deficiency but now at the age of 71 it is excellent. This makes a difference neurologically I have noticed my balance has been restored to normal, my hair grows again, my hip does not ache to the degree of not being able to walk properly for a long time. No more digestive problems!
    Every day I notice a little difference of something that has disappeared. It is wonderful. If one sticks to the diet, one never has to see this doctor again. She warns for the medication becoming too strong after a while and people lowering their thyroid meds.
    Her website is medisynx.com her name is dr Anne-Marge Vink. She answers any email she receives via her info@medisynx .com. Check it out it saves lives and improves lives tremendously for people like me and you who are sometimes totally hopeless about their health. I hope for everybody’s sake you look her up and consider. It works.

    Reply
    • jacqueline collins hullar

      Machteld, TY for posting your two very interesting stories.

      As for the Mayne T3- I am a bit confused, as I thought that was one of the two standard generics available. I will recheck the STTM page with the list of the T3 versions out there. But it is really just amazing how very differently we respond to the slightest variations in these formulas. I have not read much about the formula differences- I thought it was just different fillers, but maybe the main synthetic hormone is a bit different as well?

      The doctor in the Netherlands sounds worth looking into!!! I am glad you have had such amazing success.

      Reply
  7. Sharon

    I am frustrated reading all these comments about us patients having to hunt for help with our thyroid medications. My latest Dr. said I was on controversial meds and has lowered my levothyroxine 3 times this year even though I told her I felt like sludge. I can not wait to see what my latest insurance company will change in prices, supply, etc. anyone have a good thyroid Dr suggestion for Milwaukee, WI?

    Reply
    • jacqueline collins hullar

      Sharon, You will get help with finding a better practitioner, and with your thyroid and related health issues on the FB page run by Nicole Hightower and Jamie Dolan. It is called ADRENAL FATIGUE AND THYROID CARE.

      Reply
      • Sharon

        Thank you Jacqueline! The top thyroid Dr. list I have found still had the 83year old Dr. the changed my life with T3 but passed away 7 years ago. I am on my 3rd Dr. saying T3 is as but I have convinced them to continue to prescribe it at least. I will check out the site.

        Reply
  8. brenda foster

    I started sigma liothyronine a couple months ago. 2.5 mcg starting out. When they refilled it my body went straight down the toilet. this bottle had a different mfg’r, cant remember as i took those back & tradd for more sigma, she said i was the 2nd one to complain. she said she would not my acct. this refill. same thing, the crappy one instead of sigma. they said they miss the notes alot but sigmas is going out of business & i asked if they could fill cytomel in desperation. They dont stock it so its been 3 days & bodys back in the toilet, dizzy, cold, legs & arms ache. hopefully today they will come in & i can get half way back to normal. its bad enough then they start jackin with the meds & we are freaking out becuz we get so damn sick & miserable again. cvs bought aetna so might be part of it. if i hadnt bit my pill in half i would have never realized what was happening. tasted like wood pulp/plaster. dont know if my functional doc will go along with thyrogold but shes out till the 7th. crappy crappy crappy. I was just starting to feel better. Maybe she knows where else i can but a safe t3 med…?

    Reply
  9. Deirdre Ryan (Australia)

    Hi Janie,

    A Healthy, Happy 2019 – all the rest follows.
    Reading this email, reminds me of how one is so unwell and yet you have to deal with all this %^&*(&^%$# to have basic care that Drs should deliver-or in this case Pharmacist should be informed and disseminating same.

    I shall send an email in a few molnths to you, with full self-diagnosis and self treatment and a little help from a USA cutting edge Supplement Company I have achieved incredible health despite the 30 years of wandering in the Thyroid/Adrenal “maze”. Hips better than the mean average for a young woman, touch wood!! no chronic illnesses and all revved up now ready for the next 25-30 of my mature years.

    Best Wishes – always,

    Deirdre (a blast from the past)

    Reply
  10. Elle

    I added Cytomel to my T4 three or four years ago. I was taking 18.75 mcg (three-quarters of a 25 mcg tablet) with good results. My last two refills, however, are not giving me the same results at all, AND, the tablets are so darn hard that they’re impossible for me to break. Something doesn’t seem right. I’m in Canada, by the way.

    Reply
    • jacqueline collins hullar

      Elle, Sorry to hear this. I am not in Canada. But I have read that Pfizer-branded Cytomel is also in short supply there. I had read that there are no substitutes/generics there…? What brand are you taking: what does the label say? What company makes it? What is your dose and how many times a day? Sometimes, if we are not taking enough thyroid hormone, it can backfire after a month or two. Have you had your blood work done (FT4, FT3, RT3) since this happened? To get the best help on your blood results and dosing, I recommend the FB group “Adrenal Fatigue and Thyroid Care”. Also, what brand of T4 are you taking? Have you made any changes in brand or dose with that recently?

      Reply
  11. Miriam

    I have been through similar issues in the past. I have found generic T3 from Sigma Pharm to work equivalent to brand Cytomel. I have to specify it at my local Walgreens and they now stock it for me. It is available In 25 mcg. The website Daily Med lists all medications by manufacturer and includes all inert ingredients. This might help you identify something you can use.

    Reply
  12. Patty

    I have had a similar situation – I take two 25 mcg/day of Cytomel. I was paying 4100/month until my doctor filled out some paperwork for the insurance company and magically 3 months worth costs me $100! I do well on Cytomel and Cynomel from Mexico. But cannot get either one. Tried the Mylan generic T3 only and that was a bust. Finally doc scripted me 50 mcg 2x/day compounded pill from Belmar Labs and that is great. She herself uses Belmar’s compounded and said for whatever reason she has to take double the amount of T3 to be as strong as Cyntomel. But the expense is twice the cost. I also take a small amount of NDT to get some T1, T2, and T4. But really liked WP and had to switch to NP Thyroid because WP became unavailable.

    Again us poor patients are constantly trying to make the available meds work. I have been through this before so none of this is new but it really is challenging. I try to keep a little “back stock” of something in case this happens but ran out since the Cytomel shortage has lasted so long.

    Thanks for the blog and the updates!

    Reply
  13. Dale mcVay

    I am in California as well..
    Had been using compounded NDT until the FDA. Shut down the supply from China.
    Switched to Cytomel only as my RT3 skyrocketed from using other brands.
    I’m on Medicare which won’t cover Cytomel, same problem with the generic T3… felt as if taking nothing!
    Will contact my pharmacy about refilling all of my refills (at the cost of $433/ refill)
    I am taking 10 of the 5 mcg in divided doses.. will see if I can stockpile some ..
    And get a script for some of the 25mcg too!
    Thank you for the heads up on this!
    Dale

    Reply
  14. Ellen

    One suggestion to consider is going to the press about this. Washington Post, New York Times, etc. Sometimes when a company gets bad press about something, they fix the issue faster…Just a thought.

    Reply
  15. Lynn

    As I read this, I understood it all (I also take two 25mcg T3 daily) because I went through the same thing. Price got so high I started reading online about other choices. Luckily I found out that Cytomel has gluten in it so I switched to the only generic alternative without gluten, Libertas (formerly Mayne Pharma, Paddock/Perrigo). (I did try compounded too and it was a disaster). When Costco orders it for me, it is still labeled Mayne Pharma. I had to give the pharmacist the NPC number I received from Perrigo so they could order it: “The new NDC number for the 25mcg is 51862-321-01”. The 25mcg T3 they make is the only one without gluten so I switched from Cytomel and it seems to be working so far. I am beginning to think that maybe the raw ingredients come from China and are being impacted by the tariffs. Pfizer may not want to disclose to the public that it comes from China (remember the pet food fiasco?). I think a lot of pharmaceutical ingredients come from China and India.

    Reply
    • Jacqueline

      Lynn, Thanks for sharing your story.
      That is very interesting about how you accessed one of the two generic versions of T3 only at Costco. I may very well follow you with that switch, if I am unable to get the Pfizer in 25 much pills or I find that it does work as well when it is finally back in production, albeit at a new facility?? Was the generic less expensive that the Pfizer brand? Please let us know how it goes with the new pills.

      As to your theory about Chinese tariffs, I think the Pfizer Cytomel shortages started in May 2018 before the tariffs were implemented AFAIK. In Canada, there was a public announcement about the disruption oil supply of Pfizer Cytomel (nothing like that by US FDA that I could find:( ): https://www.drugshortagescanada.ca/shortage/42165

      Now I did find something I had not see about problems with tainted ingredients in China for levothyronine T4 and liothyronine T3 products made by Westminster Pharmaceuticals. This is GENERIC, not the Pfizer branded version that works for me. A voluntary recall was set up this past summer.

      It seems to be a full time job for us to keep track of what is happening to our thyroid meds. There are shortages, disruptions, FDA reviews and lots of changes in ingredients going on that we are not told about.

      Reply
      • Lynn

        I paid $29.18 just this week for a 30 day supply of the Mayne Pharma T3 (25mcg twice a day). I always tell them when getting my refill that I need that brand because there is no gluten in it and that they will have to order it. They have this info in my file, but one month they filled it with Sigma Pharm, which has gluten in it. It just happened to be the one month my husband was picking the bottle up but I had taken a picture of the bottle on his phone before he left the house and told him to make sure it was Mayne Pharm. We had to go back a few days later once they fixed it, so I’m always careful to mention the brand and the fact that it has no gluten in it so it can’t be switched. Training the pharmacist one at a time!

        Reply
      • Rick Falbo

        Jacqueline,

        Thank you very much for taking the time to share all of that information with us. I really appreciate that. You said that you tried compounded T3 in the past and got nothing from it. You also mentioned that your RT3 went way up after being on compounded T3. Where did you get your compounded T3 from? I ask because I have been taking slow release compounded T3 since July 2011 due to high reverse T3 and not converting well back in 2009-2010 when I was first diagnosed with Hashimoto’s and given crappy T4 only Synthroid. I did use Cytomel for a short time back in early 2011 and it was effective. Cytomel has gluten in it so I chose to just go with compounded slow release T3. Dr Wayne Wightman from Dr Kent Holtorf’s clinic in California had me get my compounded slow release T3 from American Integrative Pharmacy in Lomita California. I am on 120mcg’s taken once in the morning. I chose to get my compounded slow release T3 from them because their version does not have the absorption issues that many other slow release T3 versions do. They also use Acidophilus as one of the fillers. I am puzzled how your reverse T3 could be high when taking only compounded slow release T3. There is no T4 to convert into reverse T3. Our livers do make some T4 but that is really odd that your reverse T3 would be that high. My reverse T3 on a range from 8-25 ng/dL was -5 just a few months ago and is always in the negative range. I have no reverse T3 issue ever when I am taking nothing but slow release compounded T3. I have three other friends who are doing the same protocol as me and their reverse T3 is always in the negative range when tested. I am glad I chose compounded slow release T3 because I am tired of big drug companies playing games with Cytomel and NDT as you just wrote about. They change the formula’s, they change facilities where they make the product, they have shortage’s, and they are very rude, intentionally evasive, and inconsiderate to their thyroid customers when these events take place as you so rightly noted. If I had no conversion issue, I would probably do even better on just NDT alone but at least so far I have never had to deal with a reformulation or shortage when being on compounded slow release T3. ERFA Canada burned me and many others really bad back in May of 2014 with their NDT product that was once so effective. Either way, I truly hope you can find a solid fast release T3 replacement for the Cytomel you were taking. Dr Holtorf’s clinic in California uses compounded slow release T3 with the majority of their patients and with great success. You do not need to make a trip to California to get it like I had to in 2011. Back in 2011, American Integrative Pharmacy could only accept prescriptions written from California licensed doctors. In the last two years, they can now accept compounded slow release T3 prescriptions from doctors in any state. I live in ILLINOIS and American Integrative Pharmacy gives patients free priority mail shipping so I receive my medication in two days. Their rates are affordable and they do compound Low Dose Naltrexone as well. I pay $42.75 a month for a 30 day supply of 120mcg’s of slow release T3. The problem you may have is finding a doctor who even understands or is willing to prescribe a T3 only thyroid protocol. That is why I chose to go to the Holtorf’s clinic originally. Many integrative and functional doctors are lazy, brain dead, and just as willfully ignorant when it comes to T3 only therapy as conventional endo’s are when it comes to NDT. I have found many integrative/functional doctors unwilling to come out of their comfort zones of NDT to want to learn about T3 only treatment. The funny thing is how they blast conventional doc’s for not wanting to come out of their comfort zones of T4 only therapy to learn about NDT. The hypocrisy is huge! So if you ever choose to give compounded slow release T3 another chance, the challenge will be finding a doctor who will give you a high enough dose to remove symptoms such as my 120mcg’s that I require. American Integrative Pharmacy’s phone number is 310-539-1750 or toll free at 1-855-247-7948. I hope you, Janie, and all thyroid patients world wide have a blessed and better New Year!

        Reply
        • jacqueline collins hullar

          Rick Falbo- All great questions. My RT3 was high when I was on a combo of Synthroid and Women Intl Pharmacy T3 Compounded in Olive Oil. (I switched to these from Tirosint and Cytomel to save money.) I was not well when on this, and really wanted it to work, but I gained a TON of weight, and slept much of the day for almost two years, as I kept raising the dose of the T3, but I finally gave up and switched to a new practitioner. By that time, I had my RT3 tested for the first time (after reading STTM) and it was something like 23. When I switched to T3-only (first on slow-release compounded which did not help me, then back to Pfizer- branded Cytomel which I had been on with Tirosint for almost 15 years before I tried the compounded), my RT3 went right down to 11. The RT3 seems to be primarily from the Synthroid, not cortisol or iron levels (yes, my iron is low and ferritin high, my saliva test had the right curve with only slightly off levels). My CRP (inflammation) was still high, but I next brought that down with a very clean simple diet with no sugar, grain, starch or dairy for five months, and lost 50 pounds, with energy again! I rested and had very little stress for the first 6 months of this program, and weathered some very bad emotional stuff quite well after that, so I think my adrenals are much healthier now. Then I added Synthroid back, and boom, in 4 weeks my RT3 was way up again. So I have switched to NP Thyroid for the storage hormones, and will get new blood work in a few weeks- I feel okay, but we shall see how the RT3 is… I may have to work more on my iron, ferritin, CRP, and foods to get the RT3 down. No gut issues or tumors or auto-immune diseases (beyond Has his, which would be seri-negative for me) have been found in ultrasounds, specialized blood tests, and exams with specialists.

          I was slipped generic T3 by the pharmacy a few times between 2000 and 2012- without my knowing it. I realized each time because I felt so lousy within days and then checked the label on the bottle to see that it was not Pfizer’s. After that happened a few times, I had my doc mark a requirement for Pfizer-branded Liothyronine on my prescriptions, and I still read it carefully every time I pick it up.

          Very interesting about the compounding pharmacy you use. I am a bit leery of slow-release T3, and would prefer to take regular release many times a day, but to each his/her own, as we are all different. I did try SR for a few months at the beginning of this new program, but I did not feel well- very lethargic. I was nowhere near that 120 mcg dose, though! If my CRP does not come down in the next few months of trying a few more things, I may try LDN- no one can figure out the cause, and I def do not have any antibodies, but I occasionally get unexplained fevers, and may have a recurring case of candida. But getting a practitioner to prescribe LDN is not easy 🙂 There is a branch of Holtorf in NorCal, but it seems that their best practitioners are in SoCal, so I have not (yet) tried that route. I see a local Naturopath who is pretty flexible to what I suggest, following STTM, up to a point. Strangely, I feel no difference whether my RT3 is high or low when I am not on Synthroid, or when my CRP is high or lower. I am totally fine (in how I feel and in my RT3) on Pfizer-Cytomel only, so that is always an option longer term, but I still want to try to correct the high CRP, high ferritin, low iron.

          BUT – so far, with several experiences of generics and of compounded and slow release- the Pfizer-brand of Cytomel is the main and only thing that has worked for me, so this shortage and disruption of production and change in where/how it is made is scaring me a great deal. It is my foundation.

          Have you tried the Iodine Protocol, btw? I know it is very personal and can have varying results.
          Which practitioner do you see at Holtorf, to get that super-high dose of SR Compounded T3?
          How are your other numbers (which can raise RT3 when not on T3-only)?: iron, ferritin, CRP, cortisol?

          Thanks for the long post. Your experience is interesting, and may help some of us.

          Reply
          • Rick Falbo

            Hello Jacqueline. Thank you for taking the time to respond to my questions and writing such a long response. From what I read, your RT3 went up from the Synthroid. Any T4 only thyroid med has the potential to cause a ReverseT3 issue. NDT can cause Reverse T3 as well because of the amount of T4 in it when somebody has conversion issues. I am not sure if you are aware of the late great Dr John Lowe. I spoke with him on the phone multiple times before his passing. He was uniquely gifted and quite brilliant. He liked taking Cytomel but he never multi-dosed it. He took his entire dose in the morning which would of been like 150-225mcg’s. Many thought that was insane because they were told to try and multi-dose 3-6 times a day with fast release T3 like Cytomel. He said the body has buffers that will prevent hyperthyroid symptoms. I asked Dr Kent Holtorf about this on the phone several years ago and he admitted that Dr Lowe was correct about our bodies having these buffers. Dr Holtorf still believed that taking slow release compounded T3 was safer and a more natural way to dose it. He argued that many people have too many low’s and high’s when trying to multi-dose fast release T3. It was his perspective that taking a compounded slow release T3 that had no absorption issues was the best way to go. Dr Lowe was friends with Dr Holtorf. Dr Lowe admitted to me that if one was able to take a compounded slow release T3 that had no traditional absorption issues, that would be effective. As you stated, it really is each to their own when it comes to how one wants to dose their thyroid medication.

            I really do not believe you gave compounded slow release T3 ALONE a fair try. You would have to take it ALONE without any T4 for months to build up to a higher dose. By not taking any T4, there should be no Reverse T3 issue at all. If you ever choose to try that, American Integrative Pharmacy in California has a really solid slow release T3 only formula. You can also get this from going to any of Dr Holtorf’s clinics because they have their own dispensary on site. By the way, you may have Hashimoto’s like myself and some people have it without any increased anti-thyroid anti-bodies showing on a blood test. If you do have Hashimoto’s, then taking LDN could be very helpful. LDN seems to work for about 30%-40% of the people who take it and it has no major side effects. American Integrative Pharmacy in California charges like $46 dollars a month for a 30 day supply of LDN at the 4.5mg dose which is very affordable. Larry at the Compounder in Aurora ILLINOIS has been making LDN for years and they do it well. You can also get LDN from Skip Lenz at Skip’s Pharmacy in Florida. Skip was one of the pioneer’s with the LDN site online and has been making LDN for years as well. Larry and Skip are friends with each other. When it comes to Hashimoto’s, your immune system is the problem and your thyroid is the victim. It is an auto-immune issue and one’s diet will also play a huge role. I have had a candida/yeast overgrowth issue for many years and you may as well. Until we get that gut issue under control, we will not absorb our medication as good as other thyroid patients. Many have reported that LDN did not work for them when they had a candida issue but that is highly subjective. LDN is an immune system modulator and one would think that having one’s immune system stronger and more balanced would only help keep yeast/fungus in check.

            I seen Dr Wayne Wightman at Dr Holtorf’s clinic. Dr Holtorf has many solid integrative doctors, naturopathic doctors, and nurse practitioners working with him. The Holtorf clinic prescribes LDN all the time and compounded slow release T3. If you want to read a good book on LDN, it is called “The LDN Book” which came out in Feb 2016 and it is edited by Linda Elsegood. Dr Kent Holtorf wrote two chapters in that book dealing with Thyroid Disorders and Chronic Fatigue Syndrome/Fibromyalgia. Another really excellent book on LDN is called “The Power Of Honest Medicine” by Julia Shopick and Don Schwartz which just came out November 16, 2018. I would read those two if you have time. I have stayed away from Iodine protocol’s due to having Hashimoto’s. That is another heated debate. Dr David Brownstein will tell you that as long as one has the major co-factors in line such as selenium, etc….then supplementing with Iodine even if one has Hashimoto’s is totally safe. Thyroid Pharmacist Izabella Wentz who wrote “Root Cause” and “Hashimoto’s Protocol” would disagree and say there are safer options than using Iodine when one has Hashimoto’s. Each to their own once again…lol. I truly hope and pray that you are able to find a solution for yourself that removes symptoms and allows you to feel optimal once again. Thank you once again for your insights.

          • Janie Bowthorpe

            Hi Rick. Actually, it’s not the fact that NDT has T4 in it that causes RT3. Our RT3 issues have three main causes in this order: inadequate iron, inflammation, and high cortisol. The latter is based on MANY experiences and observations over the years.

            Lowe also stated that he was able to take all his T3 in one dose because he’d been on it long enough that T3 was in his tissues, and the latter could slowly release it.

            Also, it’s false that if you don’t take T4, you won’t have an RT3 issue. To the contrary, some do get an RT3 issue just by underdosing on T3. i.e. underdosing for some can mean their thyroid (if they still have it) can still produce “some” T4, and that “some” can convert to RT3 in the presence of what I stated above. We’ve seen that before over the years.

            Many, many Hashi’s patients have benefited from iodine, as has been reported by them over the years. Some even stated that it was iodine alone that lowered their antibodies. Probably the minority but still has happened. Those who haven’t found success with iodine and instead problems state they later discovered it was the detoxing it caused that caused problems. And even leaders in this movement don’t understand that, thus can call iodine dangerous.

            Finally, there have also been a high percentage of those who used slow-release in saying it wasn’t as good as simply multi-dosing. Yes there will always be gray areas–some doing well when others haven’t. But it has always seemed to be the minority who did well on slow-release and the majority saying multi-dosing did better. Remember that when someone owns the compounding pharmacy, they will always say it’s better. lol. But experiences don’t always prove it. lol And the latter is what Stop the Thyroid Madness is about–years and years of solid patient experiences.

        • Rick Falbo

          Janie….thank you for the clarifications in what I wrote to Jacqueline. I appreciate that. In fairness, Dr Holtorf does not own American Integrative Pharmacy but he does own the dispensaries at his locations. Dr Holtorf is not against NDT. His clinics just seem to get plenty of people with difficult Reverse T3 issues and they tend to prescribe compunded slow release T3 for so many patients. I am also not against NDT at all. I am jealous and wish it would work for me. I am glad you and so many other thyroid patients do so well on NDT. I have been telling people about your site and buying them your books for years. Thank you for all that you do to help thyroid patients around the world become educated and equipped to tackle their thyroid/adrenal struggles. I also appreciate you allowing the guest blog post by Jacqueline. It was very informative.

          Reply

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