Glad to see some reason creeping in with thyroid patient discussion!

IMG_2564If you have been keeping up with my posts, you’ll know that thyroid patients have been facing a shortage of desiccated thyroid for many weeks, probably due to sharp increased demand i.e. thyroid patients have been finding out how lousy T4-only treatment like Synthroid has been for them, and how much better desiccated thyroid is.

That demand became especially true after a reformulation of Armour by Forest Labs in 2009 drove patients to RLC’s Naturethroid and Westhroid. The “new” Armour caused a return of hypo symptoms plus new maddening ones, including palpitations and sleep problems never seen before. As Julia Roberts said in the 1990 movie Pretty Woman: Big mistake, Big, Huge.

In addition, it didn’t help when Time Cap Labs, a pharmaceutical which made plenty of desiccated thyroid for other pharmaceuticals, stopped production after being contacted by the FDA. This action was probably in line with their aims to make long-term unapproved drugs become approved, even if the timing was incredibly stupid.

As all the above was happening, panic ensued!

We’ve heard all varieties of negative presumptions from thyroid patients about what caused the shortage, including an FDA conspiracy and an overt belief that desiccated thyroid is about to be removed. Patients have threatened law suits, blamed pharmaceuticals, and/or sent numerous letters to FDA pleading to keep desiccated thyroid as if it was to be gone tomorrow. Even I, at first, fell in line wondering about the FDA.

But it started to dawn on me, as it has others, than we have been jumping the gun, not giving enough emphasis to facts and reason.

And finally, facts and reason are starting to appear on blogs and groups:

1) Yes, Forest Labs, the makers of Armour, and RLC, the makers of Naturethroid and Westhroid, state they have not been contacted by the FDA. We have no reason to disbelieve them!

2) Yes, RLC is working hard to catch up, as is American Laboratories, both state. We also have no reason to disbelieve them!

3) Yes, thyroid patients who know the superiority of desiccated thyroid have always been there to support them. Glad to see that recognition in blog and group postings.

4) Yes, as health writer Mary Shomon has stated, information-gathering, brainstorming, and communicating with our doctors is a good thing to be doing. That is contrary to making panicky negative predictions about desiccated thyroid, rallying for law suits, and feeding ideas to the FDA that may not be there in the first place.

5) Yes, we need to put energy in letting the world know about the superiority of desiccated thyroid treatment in our lives. That is where our power lies in the face of clueless Endocrinologists and their equally-clueless medical boards like AACE.

6) Yes, we need to listen to and support the pharmaceuticals and laboratories which give us the desiccated thyroid we need. It’s they who have to walk the line with the FDA. Let’s listen to their cautions and support them.

Strangely, there are still misconceptions being reported by patient blogs and posts:

1) That we don’t know what caused the shortage. But we do! Demand is as logical as it gets. All of us have succeeded in getting the word out! That is exactly why I created STTM in the first place! And by emails I get every week, it’s clear that it’s been working.

2) That groups like the Coalition for Desiccated Thyroid (CDT) have a wait-and-see attitude. That is as silly as saying STTM wants to ban T4 or encourages self-treatment. There are simply some thyroid patients who don’t agree with the extreme panic and negative presumptions that have been going on, and want more reason in our pro-activity! Patients have been encouraged to spread the word in any way possible about the superiority of desiccated thyroid and how it’s changed lives, NOT to feed dire negative predictions which only end up giving ideas we don’t want to give! You are most welcome to join the Coalition above in addition to other groups.

Good for patients and advocates alike for putting more reason and fact in this situation.

I’m also glad to see some strategic, pro-active behind-the-scenes work going on as a just-in-case line of activism. That is the way it should have always been–a plan for action “just in case”, not dire predictions and fear mongering as if it all WAS going to happen.

We’ll get through this, folks. Here are options for thyroid treatment in the meantime. And if you want to talk to other patients, join our thyroid patient Community Call this Friday. Details are found in the September 7th blog post.

Important notes: All the information on this website is copyrighted. 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.

Write a new comment below

37 Responses to “Glad to see some reason creeping in with thyroid patient discussion!”

  1. MYLAN IS TERRIBLE!

    Walgreens just switched (jan-feb 2010) nationwide to Mylan as their generic T3 supplier. Walgreens refilled my rx without notifiying me that they had changed mfgs. After 2 days I tanked. As you all know T3 has a half-life of about 1 day in the blood so by the 3rd day I was out of it. I also take Synthroid .75 and my T3 is 25 mcgs daily. I don’t convert T4 to T3 very well on my own so I REALLY noticed the difference.

    I called around to find a small independent pharmacy that still had PADDOCK’s generic T3 and had to pay for it on my own. No biggie. I’d rather feel better than not.

    Just wanted to share my generic experience. Some day I hope to be albe to switch to the pig products – but my antibodies are still too high for that. Perhaps next year.

    Reply
  2. Toni

    Hey Everyone, just want to say that my daughter went to the doctor in Germany and he put her on 150 mcg of what he said was the best thyroid prescription in Germany. He would not prescribe the natural thyroid. However, she can tell a huge difference in the German Thyroid prescription. She is warm and hungry, somethings she has not been in some time. I am just glad she feels better.

    Reply
  3. Shauna

    Man, I love this website! Everybody is so helpful and sweet and truly caring. I will definitely start graphing my temperature starting tomorrow. I’m not sure what the symptoms of hyper are, but the way you described it makes so much sense why I could be feeling bad. I am now taking 3 capsules of Nutri-Meds, and I feel a little better than I did last week. Which is not to say I feel good. So maybe I’ll take one more pill and chart the temps.

    Reply
  4. Lisa Truitt

    Shauna,

    The nutrimeds bottle says not to take in excess of five tablets. I don’t know why it says that. It may just be a thing to avoid being sued or something. It makes sense to me that you would just take as many as are needed for you. If you were taking 120 mg of armour and still didn’t feel good I bet you would need quite a few of the nutrimeds. I was taking 30 mg of armour. I think that wasn’t quite enough for me really, but I didn’t feel too bad on it. I am taking four times that amount in nutrimeds to feel pretty good. So if that was about the same for you, that would be like fourish of the nutrimeds, each being 130 mg I think. But you said you still didn’t feel as we The chest symptoms you were talking about before you took armll as you though you should on 120 of armour. So you may need even more than the four nutrimeds, like four and a half or five. Or your adrenals may be involved. Do you get to a point where if you exceed a certain amount of armour or nutrimeds you feel symptoms of hyperthyroidism, and if you back down just a little then you are back to hypo? This usually means that your adrenals are underfunctioning and can’t handle it when you go high enough on your medication to resolve the hypo. If you do go high enough that it could resolve the hypo, you then jump immediately to hyper. The chest symptoms you had before trying armour, (I am assuming you weren’t taking anything) can be symptoms of low thyroid and or adrenal I believe. I would also encourage you to take your temps as advised on this website at 9, noon, and 3 pm for about a week and graph your results, so you can tell if you are just dealing with low thyroid, or low thyroid and adrenal. Seeing the patterns in your temps can really help you to gauge whether you are making progress. If your temps are low after taking a few days of a certain dosage of nutrimeds or whatever other medication, you can try going up and see what happens. Then you can also see what happens over a few days in terms of the stability of your temps. If they are fluctuating too much, then you know your adrenals are having a hard time and you need to support them. Hydrocortisone, which I think I remember seeing some sources to get that without prescrip, that people have found reliable if you can’t get prescrip, or a supplement called Isocort are recommended on this site. Nutrimeds also has raw whole adrenal or adrenal cortex as well. I don’t know how it compares to isocort.

    Hang in there! I think you can get this figured out and get to feeling better.

    Reply
  5. Toni

    (Toni, there are correctible reasons why someone may not feel good on desiccated thyroid: http://www.stopthethyroidmadness.com/mistakes-patients-make or more detail in Chapter 11 of the book)

    Hi Shauna, I could not find throidis on google, did you by any chance mean thyroiditis? I am not sure that what you were experiencing were symptoms of that or not. Maybe someone else here knows?

    I know I never felt good on Armour but after visiting this site it seems I was taking it wrong and most likely not enough for me. I was only taking 3 grains and all at once, in the morning. I felt so awful, I could not function at all. Went back on Synthroid after several years on Armour and I can function at least but there is so much left to be desired in the way I feel, like freezing for instance. I read the stories on this website and I want to feel as good as the people do in the success stories. Now I that I have some Naturethroid, I am chicken to try it and I also feel selfish because so many people are looking for this drug right now. My daughter is having big trouble on her Levothyroxine in Germany and I may have to take the Naturethroid I got to her there if she cannot get what she needs. I know my daughter has had chest and heart pains on Synthroid and maybe others have as well. She is taking a generic right now by Mylan, better for her than Synthroid but not by much. I guess if you aren’t going to feel good anyway you may as well buy the cheaper generic! I have read here where some people do feel better on Naturethroid than Armour so I am hoping my daughter and I are some of those people. Get out your telephone book and start calling the pharmacies, that is what I did. I found 3 that had Armour and 1 that had the Naturethroid and I could have called 50 more besides that to see what they had, maybe more, that is just a guess. I tried Nutri Meds before and I felt rotten. I want to be one of the people who can take Naturethroid and feel fantastic, hair, warm, energy, clarity of thought! Please let us know if you can find some for yourself and good luck!

    Reply
  6. Shauna

    Thanks for the info Toni! I will start taking my temp. This whole thing really sucks. I don’t even know how bad my thyroid is…I just know I feel foggy all the time, bad memory, hair falling out…ugh. I didn’t feel all that much better on Armour, but maybe I was getting to the right dose, who knows. I had just started taking 120 when they ran out. I am now taking 3 capsules of Nutri-Meds. A couple of months ago, before I started taking Armour (and a month or two after stopping Synthroid), I started getting weird heart/chest pains. Is that a symptom of thyroidis?

    Reply
  7. Toni

    I don’t even know if I want to start on Natuethroid yet. I can function on Synthroid with a drop of Potassium Iodide every other day or so. I just don’t think it is fair of me to switch right now when so many people who desperately depend on this medication are having a hard time getting it. I am just going to wait and see if my daughter needs what I have already gotten. She may be able to get Thyreogland in Germany (Thanks to this site I was able to give her the name of the prescription along with the telephone number for the pharmacy!) Maybe I will wait to start on Naturethroid after it is being restocked in the pharmacies instead. I feel so piggish trying to hog it when I have survived this long and can last a little longer! Oink, Oink!

    Reply
  8. Toni

    Hi Everyone,
    I went to pick up my new prescription for Naturethroid today and the Pharmacist called the company to find out when she could order more and they told her they would be able to send her more Naturethroid sometime in November. She told me when she runs out of what she has that is it until November if they are really going to be ready by then. I have enough to start on and after I see how I feel in a few days I may get more before it is gone. It is not cheap! Of course, if it works that is besides the point. Oh, this Pharmacist has her own Compounding Pharmacy here and she said she has only dispensed Naturethroid there because she feels it is superior to Armour. Her opinion, I know some people preferred Armour, I just threw that in incase anyone was interested. She said she can also make compounded capsules of Natural thyroid but it would be much more expensive.

    Reply
  9. Lisa Truitt

    Shauna,

    You need to be taking your temp. and gauging how you feel. If you are still not feeling right, take a little more. Before Nutrimeds I was taking 30 mg. of armour. I started out with a quarter of a nutrimeds tab, as that is somewhat close to 30 mg. But I have had to steadily increase on up to a whole tablet as I have been watching my temps. and how I feel. I am feeling pretty good after a few days on a whole tablet, but I wasn’t taking that much armour to begin with. You may need considerably more. You could also call and talk with the lady at nutrimeds, I think Mary is her name. She is very helpful and answers any questions. She uses nutrimeds herself. It seems to be true that quite a bit more is needed than if a person were using armour, but my experience seems to be showing that if you get up to the right amount it can work. I also like that it is all natural and I don’t want to take something like the nonprescrip stuff from Thailand that so many like, because it is full of aluminum based dyes of about four different varieties.

    Reply
  10. Enrique

    (From Janie: If you want feedback, use patient groups here: http://www.stopthethyroidmadness.com/talk-to-others Also, read this: http://www.stopthethyroidmadness.com/things-we-have-learned , or Chapter 3 in the book with more detail, and share it with your doctor. And finally, when you post lab results to any of the above patient groups, always give the ranges)

    I ‘ve been trying to switch to Thyroid by ERFA (after 18 years on Synthroid) and I feel tired and foggy and gained 5 pounds in 2 weeks. My last test results last month were:

    Free T3: 3.0

    Free T4: 1.8

    Cortisol Morning (saliva): 4.6

    Cortisol Noon (saliva): 2.0

    Cortisol Evening (saliva): 0.6 (range: 0.6-1.9)

    Cortisol Night (saliva): 0.3 (range: 0.4-1.0)

    My doctor prescribed 2 Grains of Thyroid (Erfa)
    (Note: I’m weaning myself gradually from the Synthroid)

    Reply
  11. Toni

    Okay, after reading about how much Natural Thyroid quite a few people are taking, I can see I was not taking enough and I was taking it all wrong the last time I used it and also as a child (4-6) I was not taking enough. I truly hope I can get this product and experience what everyone else here has, especially for my daughter, who has never felt good and not only that but she was not taking enough either or taking it correctly (in divided doses throughout the day) when she had been on it before.

    Here is to hoping!

    Reply
  12. Toni

    Another question please. Anyone not ever feel good on Armour ever, even the old original formula and then feel better on Naturethroid?

    Thank You!

    Reply
  13. Toni

    Here is question: I have had the weirdest stinky body odor since taking Synthroid the last 6 years, every year it gets worse and worse, I eat healthy food and exercise, I should be as pure as the driven snow! Anyone else have any experience like this? It is so gross!
    Thanks everyone!

    Reply
  14. Toni

    I just found 2 grain tablets of Armour at Walmart and 2 grain tablets of Naturethroid at the local compounding pharmacy. I only called 4 places so 2 out of 4. I got out the phone book and looked in the yellow pages under “Pharmacy.” I plan to try the Naturethroid after my doctor calls a prescription in for me on Monday.

    I had thought about trying the Nutri Meds (I may have tried that years ago, did not do well for me) but after reading that Shauna is not feeling any better on it I thought I would look for Naturethroid. I have been hypothyroid since I was two years old and my daughter since she was 5. She has had lots of problems with synthetic thyroid and yet Armour did not help much either. And I started on Armour as a child but did not do well until switching to Synthroid. However, there is much room for improvement! And my daughter is in Germany right now for school and may have to come home because she is having so many health issues. Probably from taking synthetic levothyroxine. It is very upsetting for her to have finally made it to Germany for school and not be feeling good. I wish I could send her some Naturethroid but that does not go over well in Germany. I have asked her to go to the doctor there and see if she can get a prescription for a natural thyroid medication. I do not know if Germany has anything like that available, but I am hoping.

    I know there is currently a shortage so I am going to try to buy all the Naturethroid at the compounding pharmacy, if I can afford it! I appreciate the information that the natural thyroid prescriptions my be available at the end of the year. Great website and everyone is very friendly and supportive! Thank You!

    Reply
  15. Toni

    (From Janie: Toni, there is currently a shortage of all desiccated thyroid until the end of year, when some state it will return. So if you don’t find any, use this page: https://stopthethyroidmadness.com/options-for-thyroid-treatment )

    I have been reading really good things about Naturethroid, lots of people seem to like it better than Armour, which I never did well on but I want to try Naturethroid now for me and my daughter if I can find it anywhere. I am going to look into Walmart and Kmart as suggested in the previous post. Good Luck!

    Reply
  16. Shauna

    But is the Armour back in stock the new formula? Is Naturethroid the same? What should I tell my doctor? The Nutri-meds aren’t working…unless I’m just not taking enough.

    Reply
  17. Sally

    I scored natural thyroid from a local compounding pharmacy today, and I’m thrilled! After I ran out of Armour last week, RiteAid wanted to give me generic Synthroid, which I refused to take. I went back to the leftover Levoxyl I had from before I found the right doctor, and it’s been a hell of a week, with symptoms recurring like crazy. Never, EVER again! RiteAid said they should have Armour back in stock the last week of September/first of October, but I’m delighted to find the compounding pharmacy, thanks to Janie and the folks here talking about it.

    Reply
  18. Marie

    I just tried to call my refill in for Armour at Walgreens and was told that they don’t have any and didn’t think they would be getting anymore and suggested synthroid. I told them “no thanks” hung up, and called the KMart pharmacy. Guess what??? They had plenty. Does anyone know the difference between the Naturethroid/Armour and the Nutri-Med brand? BTW–I just called WalMart and they had Armour in stock as well, but said he can only get it in certain strengths. Wow, there’s really a mix of information going around!!

    Reply
  19. Kelly Burgess

    I’ve been researching the hypo-adrenal and thyroid issues I’m struggling with, and one of the surprising things I’ve learned is that I have low aldosterone, as do my daughters, and I now believe, my deceased mother, and possibly her (deceased) mother as well! Here’s the interesting thing – when you are diagnosed (if you can get so lucky as to find a Dr. who has a clue, and will even consider it) with low aldosterone, you are put on Florinef, which is a SYNTHETIC hormone, made from Fluoride, a toxic substance (never mind that they put it in our water – what do you think made us all sick in the first place?) not unlike Levothyroxine, with the same toxic results – often requiring lifetime use.

    The thing that puzzles me is Florinef is a replacement for natural aldosterone, which is still available, even to us Americans, from Canadian pharmacies with our Dr’s prescription, yet virtually everyone I’ve encountered here and on other forums for adrenal failure just accept that they must use the synthetic. I even saw one post from a Canadian patient asking where she could get the synthetic! I’m now thinking that no one knows that the natural substance is out there and that we are being sold up the river by the FDA, the Medical Establishment and Big Pharma…The FDA banned natural aldosterone from being sold in the US when Big Pharma found that it could make big money forcing us to use their synthetic toxic chemicals. I WILL NOT put this toxic substance into my body, and I urge everyone who is affected by low aldosterone to add this substance to the fight for our rights as patients and Americans.

    By the way, one of the symptoms of my illness was sudden hearing loss of over 40%, which the specialists have no idea the cause or cure for, which I’ve since found out is a direct result of low aldosterone and this natural substance can CURE! (How many other sufferers of this forum also lost their hearing?)

    I’m obtaining the natural aldosterone from Canada Global Drugs at http://www.canadaglobaldrugs.com

    I know I sound strident in this post, but I am just appalled that our right to health is being withheld from us due to greed, and that we Americans are allowing our lives to be diminished by Big Pharma and the FDA obscenity. I, for one, do not want my own and daughter’s lives to be degraded by this illness simply so these fat cats can live large. Maybe it is time we fought for a cause again; isn’t that what made America great in the first place?

    Reply
  20. Mary

    I spent hours trying to find a supply in my area and finally found that a specialty pharmacy or compounding pharmacy was the way to go. I was able to get my RX and they assured me not to worry, just make sure that your script reads natural dessicated thyroid (no brand name) along with total dose to be taken daily (that way they can give you different tablet strengths). I was happy and gratefully relieved that I could stop worrying about this at least for now.

    Reply
  21. Shauna

    So I have been taking my Nutri-Meds that I received a few days ago. I am taking 1 pill thyroid and 1 pill adrenal. So far I feel like crap…I am so at a loss here. Does anybody know how many grains of Nutri-Meds = how many grains of Armour? I guess the ratio, is what I’m saying. Also, does anybody know if you are supposed to not eat before/after taking Nutri-Meds?

    Reply
  22. Jay

    Janie, I have been on dessicated 12 years, and have been going to Old Time Doctors who are generally over 65 years old AND on Armour themselves. I have also been to some other guru types like Dommissee and some of the ones that have wrote books. I have also done extensive research.

    When diagnosed, I had a TSH of 20 and no known hashi’s. After taking, 15mg of Armour for 1 year I had a TSH of 90 and a raging case of Hashi’s. So for this reason, I do seem some real possibility of Armour increasing the risk of antibody production and for Hashi’s. And Dommisse is not the only one saying it.

    That said, I have never tried synthetics and would never switch to them unless forced to. I am stuck on dessicated now because my thyroid is gone from Hashi’s, but I am saying that all these healthier people taking one grain or less might be safer on synthetics. If their thyroid condition gets worse to where they need the larger doses, then yes it is time for dessicated.

    (From Janie: Jay, it’s clear what was going on. You probably did have Hashi’s all along, unrevealed. And only one grain of Armour was only going to feed it, not stop it. Higher doses (and that “higher” is unique to each individual) will stop the Hashi’s attack. Lower doses either bring it to light or feed it…as happened to you.)

    Reply
  23. Jay

    I am worried that this promoting of dessicated as superior will increase the shortage.

    You have to remember. Some patients will die without natural thyroid. Some will have bad but livable symptoms return without natural. Generally these people have no thyroid or have bad Hashimotos.

    On the other hand, most CAN live without dessicated just fine because they don’t have Hashi’s and their thyroid is still partially functioning. 85% of the thyroid patients of the World are on synthetic and many are doing just fine. “Sell” all these folks on natural…..and you create a shortage for the people whose life depends on natural. In addition, for these healthier people, dessicated increases the risk for Hashi’s per guru Dr. Dommissee of Tucson, AZ. So for people on small doses of synthetic, it may be bad to switch to small doses of natural and have them unknowingly take on the increased Hashi’s risk.

    (From Janie: Thank you for your comment Jay. But by 7 years of observation and working with quite a lot of patients worldwide, I completely disagree on a few things you have said. First, yes, there are some on T4 who do better than others. But if you dig enough, you can find lingering symptoms of an inadequate treatment in most, even if they subjectively state they it care “doing well”. And it worsens as they age.

    Second, I have come across a small amount of T4-treated individuals who seemed to have been misdiagnosed in the first place, and really never needed it. My s-in-law is one. She’s been off for years.

    Third, if Domissee says that desiccated causes an autoimmune reaction against one’s thyroid, we’re not seeing it.

    But I also think you are right—are so many turning to desiccated that it could create a future problem with supply? Hopefully, the manufacturers will find an answer to that)

    Reply
  24. Colleen Coble

    I agree we shouldn’t panic. Before I went on Armour, I was on straight Cytomel which was a total blessing. It’s still available and works great! It’s straight T3. So if the worst happens, I’ll go back on that. One interesting thing: I told my dr about the problems I’d been having with the new Armour like hair loss, etc. I’d been having some bad hip pain and couldn’t figure it out. I got one of the few bottles of Naturethroid my compounding pharmacy had left and in two days that hip pain was gone. I think it was an ingredient in the Armour. My compounding pharmacy has plenty of thyroid to compound the next batch for me so I’m going to try that next if he can’t get more Naturethroid.

    I refer everyone to this site. I really do think more and more patients are waking up to the reality that the natural thyroid meds work better.

    Reply
  25. Shauna

    I just ordered my Nutri-Meds a few days ago and it came today! I am kind of nervous to take it…but I just ran out of Armour, and I will not do synthetic. I’m not sure how much to take, but I’ll let you all know how I feel…wish me luck…I just want to feel good :-/

    Reply
  26. Renita

    I’ve written to my Senators and my House Representative several times about the importance of natural desiccated thyroid. I recently found a House Representative in my state who is on the committee that can investigate the FDA and I sent a snail mail letter to her because she only accepts emails from her constituents.

    I believe a “hardy, heads-up” about how important this old fashioned medication is to us and the fact that the synthetics are not an acceptable replacement is a worthwhile effort. Your letter may be logged, slotted, and only acknowledged via a form letter, but the more we can do to raise awareness, the less likely that something will happen behind our backs.

    Reply
  27. Lisa

    Why aren’t DR’s as informed as their patients?
    Today my DR told me that Armour and Nature-throid will be discontinued.

    I tried to explain that hadn’t happened YET and patients need their DR’s help making sure it never happens!

    Are our DR’s Uninformed or do they know something we don’t??

    Either way Canada, Germany and Thailand are going to do a booming business exporting Dessiccated thyroid to the USA.

    Lisa

    Reply
  28. Lisa

    Why aren’t DR’s as informed as their patients?
    Today my DR told me that Armour and Nature-throid will be discontinued.

    I tried to explain that hadn’t happened YET and patients need their DR’s help making sure it never happens!

    Are our DR’s Uninformed or do they know something we don’t??

    Either way Canada, Germany and Thailand are going to do a booming business exporting Dessiccated thyroid to the USA.

    Lisa

    Reply
  29. Nell

    The fact is that many of us had become hypothyroid – again – because of the change in armour. This may have caused us to suffer the paranoia of hypo and panic a little about the shortage BUT I also wonder if we really know what’s going on.

    The idea of sitting around waiting to find out whether there are plans afoot to slowly shut down the production of dessicated thyroid products terrifies me. I’m not reassured by the statements coming from the FDA because I gather they only let the general public know of their intentions when they’ve reached their final and often irrevocable decision.

    (From Janie: Hi Nell. I agree and am glad to see much going on behind the scenes. There is always a place for “alternative, just-in-case plans”. I don’t get the impression anyone is just “sitting around”. I’m also glad to see less profoundly negative presumptions and predictions on certain blog posts and groups, which certainly didn’t help anyone already coping with return of hypo. It only fed the panic.)

    Reply
  30. Sherry

    I have been having a thyroid problem for about 25 years and have gone to about 7 or 8 different doctors – all of whom told me that there was nothing wrong with me. They would tell me I was fat because I ate too much, that I should exercise and diet, and send me home. Over and over and over again – doctor after doctor after doctor. Finally I got so sick I thought I was going to die. After a number of debacles with my primary care physician, I was FINALLY referred to an endocrinologist. He read the same reports the other doctor read, sent me out for more tests, and told me that my entire endocrine system has been shutting down. He put me on prescription Vit D, Vit B12 shots, Nutropin HGH nightly shots and 30mg Armour every morning. I began to take the Armour and within 3 days I FELT GREAT!! My brain cleared up and I felt better than I had felt in years. That month (July) I lost 10 lbs, caught up on projects that I hadn’t been able to wrap my brain around in the past year or two, cleaned my house and generally got back to actually having a life. As soon as I got my next prescrption for 30 Armour pills, I started getting sick again. Can you imagine? I’m trying to keep my life, my marriage and my business together in this difficult, trying economy and after a month, it turns out I’m taking a reformulated product that is not effective for me. Yes, I feel like suing someone.

    Its like Dr Phil says, “The only thing worse than being sick, and getting fat, and feeling awful for 25 years – is being fat and sick and feeling awful for 25 years and ONE MONTH!” I’m a beautiful, smart and dynamic woman and I have just spent over 20 years of my life – all through my 30s and 40s and into my 50s – not going to the beach, not wearing shorts, buying size 18 evening gowns, feeling self-conscious having sex with my husband, and being ashamed of my body. Yes, I’m angry and this problem with the Armour hasn’t helped my situation one bit. To come climbing out of the depression and the exhaustion and the fog and begin to have a life again, then back to the pit of despair, is hard to take.

    Reply
  31. Sharon

    Still confused about where the information is coming from that doctors and pharmacists are stating that armour and naturethroid will be discontiniued. i was told this by 2 pharmacies, that they were told by their distorbutors that they will no longer be able to get these medications. I pharmacy, CVS told me to just go on synthroid, the other smaller pharmacy gave me a local compounding pharmacist’s number.
    scratching head,
    Sharon

    Reply
  32. Bethany

    If anyone is still in need of a source of desiccated thyroid, I just ordered some from http://www.nutri-meds.com if you want to check them out. It’s sold as a supplement, not a drug, so it is not by prescription.

    Reply
  33. Elenor

    I know I’m not the only one, but I am tremendously worried because I have 23 days left: my local Wal-Mart actually had a left-over bottle, so I had him pull my prescription from Costco and he filled what he could. (He also has a bottle of Naturethroid, but without a scrip from my doc, I haven’t gotten my hands on it yet.) I dropped off a request with my doc (who DOES freely prescribe Armour, although he is not ‘up’ on all he should be from STTM), asking him to write me a scrip to order 500 pills from Canada. He decided I needed the thyroid panel blood test BEFORE he’ll write it. {sigh}

    Life Extension Foundation sent (sold) me the blood test order, which I had done today. The test set costs $75 from LEF; vs. $395 from my doctor!! No insurance, so I am grateful to LEF! TSH, T4, Free T4, Free T3: http://www.lef.org/Vitamins-Supplements/ItemLC304131/Thyroid-Panel-TSH-T4-Free-T4-Free-T3-Blood-Test.html

    It’s hard to not panic as I try to ‘work’ my doctor and the calendar — and the postal services from Canada! — but thank you thank you thank you, Janie and Mary and the rest, for all your work and information! I’m planning on lending my STTM book to my doc, to see if I can get him smartened up!

    Reply
  34. April

    (From Janie: Hi April. I really do appreciate your thoughts. But I can only honestly and tactfully express what my gut and intellect tells me, just as others think they are doing. Then each and every person can make their own decision based on those different views. Unity doesn’t mean there can’t be different opinions, April. It does mean that we have to find a way to work together amicably in spite of very different opinions, which I hope to see from everyone. )

    First, since neither you nor anyone else has all the facts, you are only speculating that people are jumping the gun. You do not know everything that might be going on behind the scenes. There are many others, including Mary Shomon, (who, by the way, is considered by many respectable sources as a patient advocate first and foremost) and people such as myself who are quite intelligent enough to draw conclusions based on the available evidence and the past actions of the FDA and manipulations of big pharm. And our conclusions are no less valid that yours, and this tact you have taken of cleverly labeling us ‘fear-mongers’, panicking, etc. does nothing to promote the unity you have so vocally advocated.

    Second, You are basing your conclusions about how to best handle this based on what we now know, and this assumes that we are being told the whole story, and that RLC and the FDA are being totally forthcoming with EVERYTHING that is going on behind the scenes. You are very trusting if you think, based on what you were told, that we can put our trust in people in companies and agencies that are protecting their own interests to tell us the whole truth of what their ultimate goals and motivations are.

    So in the interest of unity, can we please admit that most of us are intelligent enough to choose the course that we think best fits not only the facts, but that those facts are evaluated in the context of knowing the hostility of big pharm, doctors, and the FDA toward natural thyroid and that we most likely do not know their real goals in this issue.

    So can we please just refrain from subtly and not-so-subtly championing one approach over another, and portraying those who think differently in a negative light? Focus on our commonalities–saving natural thyroid.

    ( P.S. from Janie: by the way, thyroid patients are definitely unified about the importance of desiccated thyroid. The differences just come in the way we interpret what’s going on. In the end, if we need to be even further united because something terrible happens, we will, April.)

    Reply
  35. Bev

    Hi Janie and EveryOne,

    Seems to me what created the panic was lack of information about what was really going on. When my pharmacist told me he could find no source of Naturethroid, I didn’t panic but I did manage to find some on my own. None of us want to run out of what we depend on for life.

    If American Labs and Forest and RLC and yes the FDA had been more forthcoming with the facts, starting with the reformulation of Armour which just happened without any explanation, things might have unfolded differently. People were getting sick on the new formulation which didn’t make anyone feel too secure either.

    When we depend on Desiccated Thryoid meds on a daily basis, necessary for life, it is no wonder people panic when they can’t get the truth about what is going on and about when what they need will be available again. No one had any real answers, no one.

    Perhaps a lesson for the future is that thousands of people’s lives depend upon a supply of this product and it would be a good idea to have some communication with pharmacists, doctors and yes, patients who are using the drug when major changes are taking place. Perhaps if any one had been told we could have discouraged the change from the old Armour to the new formulation and a lot of what has happened since could have been avoided. If it ain’t broke….

    May we all learn from our experiences!

    Peace, Love and Harmony,
    Bev

    Reply
  36. Alexia

    It seems that I an one of only two patients that demand desiccated thyroid meds from my doctor. All of my doctor’s patients get Synthroid..

    Reply
  37. Cathy C.

    The endocrinologist that I had recently visited at the suggestion of my primary care doctor was a staunch dessicated thyroid opposer. Even though I had been doing well on Armour, she insisted on my switching to Levothyroxine. When I asked about going back to Armour 4 weeks later, she actually told me that it is being pulled from the market (talk about fear mongering and misinformation!). When I confronted her with the information from the manufacturers and this blog, she was offended and basically “fired” me.

    Back to the primary care doctor for me. With more info in hand to ask her to treat my hypothyroidism herself!

    Reply

Leave a Reply