This place still seems to be active, which is why I joined. The past popular US-based thyroid forums have since dried up and I’m not much of a Facebook follower.
Edit: my first post here is asking:
1) if anyone knows of a specific group or individual thyroid rights “leader” /advocate who is currently “going up” against the new 2029 FDA ndt “biological”reclassification.
2) is this the best and most active thyroid forum for people in the USA?
3) instead of complaining about this new 2029 ruling, what can we do to possibly stop it?
I read the two or three past posts on the NDT reclassification subject matter, which is what brought me here.
I’m assuming anyone replying on this post here already knows about the subject. (since it’s been talked about here before).
My background : been using hypothyroid medication since 1997, I’ve tried all types available from back then. NDT was the type for me that worked best and since 2008 I have used several brands and generics. There’s not much to choose from anymore.)
The US had a few thyroid advocates who seem to join together in our 2008 and 2009 thyroid shortage and the FDA shaking up the manufacturers.These people who helped overcome that are probably burnt out now and don’t really do much today. (if you know who I’m talking about, you know their initials are: JB and MS. )
(apparently those of you here who use the armor brand will also be affected (?) - Possible very high prices.)
Thanks and hello from across the pond.😎
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Mooseontheloose
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Does anyone have any idea what will happen to NDT in 2029? I read that AbbVie will apply for Armour to be licensed (correct term?), but the fate of other brands is unknown. This reminds me of what happened to Thai thyroid (Thiroyd and TR) a few years ago when manufacturers were required to have a license and two out of three decided to stop production. Unfortunately, the only remaining brand (Thyroid-S) has a lot of issues. I never understood why there have been so many problems with US brands and also Erfa…why are those problems so difficult to solve?
I’ve not had any problems at all with ThyroidS - I’ve taken it for over 10 years - either before or after the other two Thai products vanished. I thought it was due to swine fever.
I find it interesting that quite a number of new desiccated thyroid products have launched in the USA over past few years. Suggestions that the FDA have an anti-desiccated thyroid agenda have been rife for many years. (Whether true or not!) So we must assume that these companies have taken into account likely (or definite) tightening of the regulatory regime.
Have they seen the opportunity to make a quick profit between their launch and the biologics rulings coming into force - when they can just pack up shop? Or do they expect to continue into the future?
The FDA appear to have made their determination due to the animal sources. But is there any real evidence that there is a real difference between a beef steak, a pork sausage, and desiccated thyroid in terms of carrying disease?
I can very much see the potential for issues with animal derived products which are injected, implanted, etc.
The main thyroid forums were over on Yahoo and Usenet (nntp), etc. And they largely disappeared and/or fragmented over a decade ago.
Too many of the thyroid-related resources these days are glorified shops. Chasing sales over health.
Lack of any licensed desiccated thyroid product in the UK acts as a deterrent. And cost! As does the medical establishment orthodoxy which insists that desiccated thyroid has no role. (There are some honourable exceptions who are asking relevant questions and doing some research.)
helvella - World Desiccated Thyroid
Contains details of all known desiccated thyroid products including information about several products not considered to be Natural Desiccated Thyroid (NDT/Desiccated Thyroid Extract/DTE).
Several years ago after being very stable and happy on ERFA thyroid I made the rather peculiar decision to stop taking it and to switch to a combination of Levothyroxine and T3 instead.
Why? As someone who is catastrophically poorly without thyroid replacement I began to have concerns that the supply of NDT may become an issue or that my GP or Endocrinologist at some point, would cease to authorise or support my prescription. I was also concerned, reading the occasional posts here on this site from fellow ‘hypo’s who seemed to have occasional issues with their chosen NDT.
And so I chose a more orthodox route and said goodbye to my beloved NDT in favour of Levothyroxine and Liothyronine Sodium.
Have I had issues with my combined Levo T4 and T3.? Yes. Getting the balance right has been hard and has taken years of adjustments which I foresee as an on going issue.
Do I feel well? Not 100% and I doubt I ever will. Mornings are hell, followed by full steam ahead for 5 or 6 hrs followed by a slow, descending cloud of nausea, low mood, flu type symptoms, pain and insomnia.
So why continue this inadequate form of replacement? Well, quite simply, because it makes me feel SAFE. As someone who has Hypopituitarism, I know that wherever I am in the world, I am pretty much guaranteed access to Levo and T3 should an emergency arise. That is very very good to know.
I know I haven’t answered your question directly. But I thought another perspective on NDT may be of interest.
I take thyroidS and have found it very satisfactory. I’m hoping thyroidS escapes this US biologic baloney which is nothing more than a money grabbing exercise by big pharma, and I will take ThyroidS for as long as I can get it.
Well, I cannot imagine that Thai pharmaceutical companies can be told by the FDA what to do…! But it is worrying that legislation in Thailand now requires NDT to be licensed which apparently is a costly procedure that forced two good Thai brands off the market.
It is good to hear that you are doing well on Thyroid-S. I took it successfully for years, but have hesitated to take it again due to bad online reviews and rumours of a reformulation.
Don’t pay attention to that scaremongering I’ve found it’s fine and my free T3 levels are excellent on it. It looks a bit darker than the old stuff so they’ve most likely done something to it, unless it fades with age. There’s really only one way to know if it still suits I guess, that’s to try it.
I didn’t know they’d forced it to be licenced in Thailand. It depends if they decide to go the biologic route as well I suppose but as you say the fda have no say in it. It’ll persist as it is after all that nonsense is applied in the states.
It has interesting history and context/definitions. Like this:
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The NDT Market Competition
There are three companies making NDT drugs in the U.S.:
Acella, which makes NP Thyroid, has less than 200 employees, and around $120 million in annual revenue.
RLC, which makes WP Thyroid and Nature-throid, has less than 50 employees, and around $30 million in annual revenue
AbbVie, which makes the best-known brand of NDT Armour Thyroid, employs about 30,000 people in 75 countries, and has annual revenue of around $30 billion -- yes, billion -- a year. This global pharma behemoth also has huge armies of drug reps, marketing teams, and lobbyists on staff. Note that AbbVie only recently acquired Allergan – and Armour.
In addition to Armour Thyroid, AbbVie also manufactures the best-known brand of levothyroxine: Synthroid.
…
An important point: AbbVie’s Synthroid brand levothyroxine has the highest retail price of any brand-name levothyroxine tablet. Their Armour Thyroid NDT drug has the highest retail price of any natural desiccated thyroid drug. AbbVie’s two thyroid drugs, in fact, frequently have a retail price that is more than double other brand names.
…
– but AbbVie is being left alone. Why?
AND, at the same time, we have the FDA – seemingly out of the blue -- making a surprise announcement to apply a new “biologics” designation to a safe and effective 100-year old drug that does not fit the definition of a biologic. And this controversial decision by the FDA will effectively put AbbVie’s competitors out of the NDT business for good. Again, why?
Why? Follow the Money!
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A good read overall that answers the “why” - which is always “follow the money.”
The article points out the many conflicts of interest in the process as well. The fox guarding the hen house as they say.
In response, I too have been without a thyroid since 98"and live in the US. There's a fairly new Ndt "Niva thyroid" it's only available up to a 2 grain dose. The ingredients are cleaner than most. Team inspire is a forum that I use from time to time. Lately, there hasn't been any advancement or development in thinking or treatment being offered. It's the same old stuff being shared since 8yrs ago. I also found this UK forum a couple of weeks ago and find it more informative. All the best
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New thyroid suffers don’t stand a chance with advice like this. 
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