A Pandora’s Box is being opened, and some thyroid patients will have strong opinions

When I found out about natural desiccated thyroid in 2003, which at the time was Armour (and when it used to be a better product), I was lucky to find a Nurse Practitioner to put me on it, even if I had to drive far.  Today, I use a different doctor who totally supports my new health on desiccated thyroid. Natural desiccated thyroid has saved my life.

I’ve been lucky. But some thyroid patients have not.

It’s been clear that a certain percentage of thyroid patients, who desire to be healthy and live again after the nightmare of T4-only treatment, have had a hard time finding a doctor to either prescribe desiccated thyroid, or to understand how to dose it even if they did prescribe it. Even harder have been those thyroid patients with adrenal fatigue in finding doctors who understand this widespread and debilitating condition and how to treat it.

As a result of the latter tragedy…and here comes the big elephant in the room…some thyroid patients will state they have felt forced to self-treat and find their needed medications via online websites in order to live again.

And now comes some breaking information that I think all thyroid patients who feel forced to self-treat, and even those who don’t but use legitimate prescription-required online pharmacies, need to read:

  1. Apparently, we now have a possible explanation of why “some” online pharmacies have disappeared: a company called LegitScript LLC, which seems to have some power to push online pharmacies out of business.
  2. Also, says PharmacyChecker.com, LegitScript has been targeting some of the “legitimate pharmacies” i.e. those who require prescriptions.
  3. And here’s another twist: PharmacyChecker.com, who is “the leading online verification company for U.S. and international online pharmacies” commends LegitScript for fighting the pharmacies who send out meds without a prescription, but does not agree with LegitScript’s attack towards legitimate on-line pharmaceuticals. If this is true, the former will concern thyroid patients who feel forced self-treat in order to have their health restored, and the latter is good news for those who use these “legitimate prescription-only pharmacies”.
  4. Additionally, there may be some governmental push to get ICANN, the organization that works with URL names of businesses, to forbid URL’s to certain pharmacies across the world, and that may have huge legal implications. Last week, the Santa Monica headquarterd eNom, which is a domain name registration and wholesaler, has agreed to work with LegitScript in “identifying customers who are operating online pharmacies in violation of U.S. state or federal law”.
  5. There is going to be a White House meeting on September 29th which is focusing on addressing “illegal online sales” via these internet websites.

You can read more about PharmacyChecker’s opinion about the White House and online pharmacies here and their opinion of Legitscript here. You can read about an investigation request against the president of LegitScrip here and his rebuttal here. I am just now reading about this, and reporting above on what I know right now. I’m sure there is more to come, and I also have no doubt that this is going to produce a lot of discussion and/or action by thyroid patients. If you want to contribute to discussion on this, here is where to go. BUT REMEMBER: unlike what has happened before, let’s keep a level head and stick to facts.

18 Responses to “A Pandora’s Box is being opened, and some thyroid patients will have strong opinions”

  1. Marilyn Trunillo

    I can’t believe that this is happaning!
    What are we to do if we can’t get the meds that we need
    to live a happy and normal life?
    I for one do not want to live in misery, just mearly exisiting. I want to be active, feel great as I can, and be with my family, not on the sidelines looking in!
    I have 5 children, 4 of them are boys and are active. I love doing things with my kids!! I can’t just sit there and tell them I can’t play with them, or go fishing with them, or camping because I don’t feel well enough to do so.
    Just not right.
    I wish there was a way to fight this!!!! We need to make a stand and a very strong one at that!!!

    Reply
  2. HP

    I had to go through EVERY kind of thyroid medication on the market before my doctor would even entertain the thought of putting me on armour. Armour really was a lifesaver, too. It’s funny how even the pharmacies are eager to switch armour for something else the minute they’re out of stock. Thankfully I’ve found a pharmacy (TLC in CA) that compounds (and delivers out of state!). Although now armour doesn’t work quite as well for me and I might have to switch back to synthroid. UGH. But first I’m trying what you suggested in an earlier post – breaking up the pill. Can’t tell if it’s working yet

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  3. Erin

    This is horrible. 🙁

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  4. Linda

    @HP –
    Why not try West-throid or Nature-throid (both are naturally dessicated thyroid)?
    I am on Nature-throid and it is much better than the synthroid/cytomel I was on or Synthroid alone (I was on that too until I was almost comatose and the endo FINALLY checked my T3 and added some cytomel (synthetic T3).
    There is also NDT from Canada called Erfa that I hear is okay.

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  5. Jan

    Figures. Somewhere behind this is Big Pharma who wants us all on their Synthcrap. I really think Big Government has gone too far these days. If they didn’t bully doctors into prescribing a one size fits all treatment, people would not have to order online or find a place to get Armour. They could have a conversation and some lab work with their doctor and get what they needed filled at the local pharmacy. When you force people into a corner, they react. They find a way to preserve themselves.

    We have prescriptions and most of the time we still can’t get those filled locally. No one will stock Armour or order it for us. They all keep saying “that’s an old outdated medication”. Which simply isn’t true.

    They keep complaining about Social Security being drained…well let people have their Armour Thyroid and you will have less people disabled by hypothyroidism.
    FREE MARKET. This crap of regulating pig thyroid is nuts. You can buy more dangerous things at the supermarket (ie: over the counter cold medicine)or on a street corner. Seriously!
    I’m fed up.

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  6. Jean Friedlander

    I spoke to the FDA and they said the dessicated thyroid active ingredient is not approved by them with American Laboratories. That doesn’t make sense to me since Armour is an FDA product. American Laboratories says it is FDA approved otherwise they wouldn’t be able to make it.
    (They process the active ingredient for the compound pharmacies and for Forest, ERFA and Naturethroid)

    I also spoke to the owner at American Laboratories. They said there was no shortage, however, they had a website on saying there was due to a large demand of this product. I asked them why there was such a sudden large demand, but they said they didn’t know. They said they changed the way it is processed due to the large demand. I think they are now freeze drying the porcine thyroid to process it into a powder. I’m not sure though. Is it possible they are damaging part of the hormone? Nothing seems to be the same as the Old Armour. Ever since everyone claimed a shortage, nothing has been working as well.

    I tried Naturethroid and ERFa, however, they did not work for me. In NY, Naturethroid is made by Time Labs, which just had a huge complaint with the FDA. I heard it is made different here than in the Western States.

    For all you patients trying ERFA and Naturehroid- I would like to know if it works as well for you as the Old Armour.
    Naturethroid did not work for me at all. ERFA worked better, not as good as the Old Armour by any means, and it kept me awake at night. I couldn’t sleep well. I slept much better and felt much better on the compound medication. However, I still do not feel the same as I use to.

    (from Janie: Yes about Erfa working like the old Armour. As far as the reformulated Armour and Naturethroid, we have leaned to believe that the excess cellulose in both, and perhaps more in Armour, has been the problem. It binds the thyroid. That’s why I’m recommending to everyone to start thoroughly chewing up either before swallowing. That has helped many.)

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  7. Jean Friedlander

    I think we need to contact the FDA and find out what the truth really is. Is American Labs affiliated with the FDA on dessicated thyroid or arn’t they? We need answers as to how this powder is being processed by American Laboratories.

    I think we need to make a stand and fight this also. People need to be healthy. Without that, you can’t live your life.

    American Laboratories needs to put the specs on their website. They also need to inform people of how they process this product. They won’t give that information due to competitors, however, they do not have any. They supply this to everyone in the USA and Canada. There is no competitor for dessicated thyroid powder.

    Is it the FDA, the government or American Laboratories?
    Why don’t they give specs on their website anymore. They use to. They still do for all the other products they sell. Something is not right. And we have the right to know- we take it!

    Reply
  8. Julie Figueroa

    I take my Armour sublingually. i have not had a problem getting it here in SW FL. I was unaware that there was a shortage, again! Not that it seems to be working for me anyway….I’m still exhausted all the time 🙁

    (From Janie: Julie, the new Armour will need to be chewed up thoroughly before swallowing for it to be maximally effective. Then make sure you are on enough. )

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  9. Shell

    I’ve been on Armour for 20months after being on synthroid for 11yrs. Every mg of armour has been prescribed to me atleast twice, and alternating mg doses as well. I feel I have crushed, halved, dissolved, stood on my head while jumping on 1 fooot…just tried every manner to get this pill to work 4 me. My labs are always too hi or low, if any of my lab is out of wack, my prescript is changed. I’ve been thru 4 Dr’s so far, with an appt for tomorrow scheduled with Dr #5.
    Can I be allergic to Armour? I always hear raves about it. I have been able to loose excess weight, yet I wonder if its not from the profuse sweating on certain doses and other ‘negative’ effects…Im not sure what to ask for at my new appt (prescript wise) as I feel so frustrated over the last 20month fight. I’m so looking forward to having ‘normal’ labs and a set dose of something natural and healthier for my body. I’m also looking forward to not going to the lab every 5-8weeks!

    (From Janie: Shell, your biggest problem is letting docs dose you too rigidly by labs and not by the elimination of symptoms. Symptom elimination pulls the cart, NOT labs. See where you are here: http://www.stopthethyroidmadness.com/mistakes-patients-make Then use patient groups for further feedback: http://www.stopthethyroidmadness.com/talk-to-others )

    Reply
    • Paula Green

      Amen to that, Janie. doctors can’t read LABS. And are afraid of anything but Synthroid..STILL. I am here in RI.. The home of the renown Brown University and Drs Endos fairly young once a are STILL pushing that crap! I can’t find words for my disappointment.. I am not able to afford paying out of pocket to TRY Drs that don’t accept insurance.. Now that Grossman’s is unavailable I find outlets that seek T3 to bodybuilders is best source of name products.. I use T3 only.. Not from US.. It IS BIG GREEDY PHARMA. my advice.. Vote 4 Clinton is out only hope.. She wants to put them in their place:) thank GOD for STTM and the Yahoo Groups and ALL of you who Moderate and others who run these groups! thank YOU ALL.

      Reply
  10. Lizzy

    Has any tried getting their meds from a compound pharmacy? I spoke with one and they seemed to know alot about it. But I am so afraid to try it. Naturthroid seems to be working for me, but who knows!

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  11. Jean

    I use a compound pharmacy and I find it is better than ERFA or Naturethroid. The comparison is significant.
    However, I wish the Old Armour were back, that is the best one yet. Nothing matches it as far as I’m concerned.

    Filler is Avicil and then the active ingredient.
    Not sure if I spelt that right.

    Good Luck!

    (From Janie: Avicil is cellulose, and cellulose binds the thyroid hormones to a certain degree. It’s better to ask for powdered acidolphilus, for example)

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  12. Jean

    Oh, just one more thing. Some pharmacies are better than others. The first one I tried lied to me about it being
    Natural. They gave me synthetic. He admitted it to me later on when he couldn’t get the natural powder. The second one was good, but I thought I would try a third when I changed doctors. The third one, very young people were working there, I guess fresh out of school, and my pills didn’t work. I got really low levels. So I went back to the second one. I just thought you should know that if it doesn’t work with the first pharmacy, it doesn’t mean it won’t work with another one. Good Luck.

    Reply
  13. carolyn hunter (hunter10039)

    I currently need a very large amount (312 grains)of dessicated thyroid daily, because of malabsorbtion and seriously fast digestive problems like diarrhea, (sorry to be explicit)and as a result i need to buy a lot for a “smaller” affordable price. I got my first bottle from ERFA for 1000 tablets,125 mg each, for… if I remember correctly..$180.00.

    Later, I got some from Thailand, to compare and stock up …Now yesterday, I called up ERFA to renew my order,….the one I previously made quite a while ago….for 1000 tablets (for a payment of $180.)

    And by Gosh!!! ….the same identical amount will now cost ONE THOUSAND DOLLARS!!! ….but ….they now restrict any order ….to MAXIMUM of 3 bottles of 100 tabs…and when I wrote to ask why? they said the US customs suspected that laws were being broken, and as a result, held up or stopped and seized orders of anything larger.

    So I surmise the law of “supply and demand” is taking effect due to the humungous increase in price. And perhaps the FDA is gradually trying to turn off the spigot, of the meds and like supplies, that folks currently get from out-of-country.

    When I previously got compounded thyroid from a local compounding pharmacy, it did NOT work for me.

    And, by the way, the compounding pharmacists do NOT have to comply with the SAME LAWS that the drug companies do….that’s why they are allowed to compound thyroid.

    I discovered that the guilty ingredient was probably the microcrystalline cellulose. I learned that German compounders and other European pharmacies used a different substance for a filler: like Taurine, acidophillus and other more digestive more absorbtive-friendly FILLERS INSTEAD OF the cellulose. BUT compounded capsules are STILL more expensive than the tablets currently available.

    Complaints to the FDA is like complaining to the Fox that guards the Hen house. The FDA is notorious for protecting the interests of the big drug companies and dragging their feet for months, or even years, before taking an action to protect the public.

    An example is when they release a notice about contaminated meat, sometimes many MONTHS after it was first discovered.A notice of danger after it had been consumed, long before the notice was made.

    Every once in a while, they actually “get it right” because much of the public is now wise to their antics… and is watching them closer than before….and look at how MANY of the FDA doctors are given highly-paid JOBS with the big drug companies, when they leave the employment of the FDA!!!!

    and I have a comment to Shell:

    you are probably sweating because of lowered cortisol in your system has stressed it out because of the thyroid you need to take. Thye sweating was probably caused by adrenalin when the adrenals ran out of cortisol….This is a common effect that many experience,

    and a study in Minnisota says all who need thyroid to get their adrenal cortisol needs strategically tested first… before they begin to use thyroid…. and another survey determined that 4 X saliva tests for cortisol, are deemed more accurate than a single blood test.

    Reply
  14. J A

    I have used two online pharmacies for adrenal and thyroid meds for 2 years. Now, they are gone. Ican’t find them with any search engine I used. After reading Janie’s information, now I know why. I have to self-treat due to ignorant local doctors. I need online access to natural thyroid meds and natural HRT.

    I only see still a few pharmacies that sell the Thyroid-S that works so well for me. Looks Like I will have to stock-up-a-mundo, in case those pharmacies disappear too.

    I wouldn’t be at all surprised if not only “big pharma” but also the international codex and the new U.N. health rules were at the bottom of this mess. I would like to remain hopeful that natural meds will remain available to all who need them—but my gut hunch says otherwise.

    Reply
  15. Arlene Palto

    On October 18, 2010 I placed an order with Universal Drug for ERFA thyroid. I’d been using Universal for about a year. It is now November 10, 2010 and I still don’t have the drugs. They’re having a hard time getting the drugs and trying to blame it on patient(s). My thyroid is supposedly coming from New Zealand. BE WARNED, if you’re going to order from Universal, you’d better do it at least a month in advance and even that might not be dependable.

    Reply
  16. J M

    I have been using ERFA thyroid for about a year now. It has worked very well for me once I adjusted the dosage a bit. I recently refilled my prescription for Erfa thyroid from Universal Drug – my first refill with them. My meds did indeed come from New Zealand and it did take almost 3 weeks. The tablet looks different from my initial batch. I am waiting to see if I notice a change in efficacy.

    Reply

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