99.9 TSH AND 2 T4 with TRU thyriod??? Is this fake medication???

[olsson87]

Been taking tru thyriod for 2 month with these test results.... what should I do?!!?!

Im in panic

Ndt

[Alanna012]

Stop taking it immediately and switch to something else. Do you have Levo on hand?

What were your tests results before? What meds were you taking before?

[olsson87 in reply to Alanna012]

I started with my t4 as I took before now just 30 mins ago....

[olsson87 in reply to olsson87]

The problem is that I cant live a normal life with levo and such... i feel like a zombie.....

[Alanna012 in reply to olsson87]

Same here! Zombified. I hate levo, BUT it will keep you alive, so keeping some in stock is always handy, especially if you need to take something while searching for something better. Levo is standardised for each brand and reliable in that sense. I always keep some for emergencies.

[SeasideSusie Remembering]

Olsson87

From what I understand the first version of TruThyroid caused similar problems to what you have experienced, I think it was said that either there was no hormone or something to do with the production process prevented the body from getting the hormone.

It's been said that it has been reformulated or the production process has changed.

If you have some of the first version I'm not surprised to hear that it's not effective.

I would contact the producer, if you have the first version and explain what has happened quoting your test results, then maybe they will be willing to replace it with the new version. They will have heard of this problem before.

[olsson87 in reply to SeasideSusie]

I dont know if I trust that company with anything... scam company that take advantage of sick people in need

[SeasideSusie Remembering in reply to olsson87]

Olsson87

There is nothing to suggest that they are a scam company. They are a long established supplier of NDT and when two of the Thai brands disappeared, and subsequently Thyroid-S became almost impossible to obtain, they decided to produce their own NDT in an effort to continue supplying their customers.

Their first formulation did not work, they received feedback from their customers to this effect, they reformulated it.

What have you got to lose by contacting them to explain the problem. As I said, they will have already heard about this and have dealt with it by sending out the new version.

I am not connected with them in any way, I don't take NDT, but I have heard about the problem and what they have done to overcome it. At least give them a chance.

[olsson87 in reply to SeasideSusie]

Hmm yeah maybe u are right. I just feel that if they knew about this and didnt contact the customer they sold it too, it doesnt feel good... in my opionion they are have peoples life in their hand saying that this new formula is working and they have tested it for 1/2 grain in each tablet. When i decided to buy and this is the results i dont know anymore.... sorry im just sad and hopeless since levo is no option for me... I do understand your way of seeing their side im just mad at the moment... sorry for spreading bad vibes :/

[waveylines in reply to olsson87]

Hey Olsson please dont apologise! With a tsh of 99 you must feel terrible! I would complain to them though and either ask for the new version or get your money back. You are right they should've contacted you to let you know that you have substandard tablets. Have they put a post up on their website? Other ndt suplliers have done that with faulty batches so worth checking. Not always easy for the manufactueres to contact patients especially if you didnt buy direct from them.

There are other ndts but you will pay more.....

[olsson87 in reply to waveylines]

No nothing from their webpage... so bad

[Hidden in reply to SeasideSusie]

The same is true for the new Vietnamese brand Real Thyroid. A friend of mine got a message from her regular supplier informating customers that, due to numerous complaints, the manufacturer had switched raw material suppliers to the one that used to supply the raw material for the Thai brands. Unfortunately, this meant the price went up but they expected this to solve the problem. It seems there was an efficacy/consistency problem with the old version which caused people to go hypo. If the mfg of Tru Thyroid uses/used the same raw material supplier, that could explain the problems.

[helvella Administrator in reply to Hidden]

It doesn't explain why either company put those products onto the market without adequate testing. Indeed, it looks like they were launched without testing at all.

It might fall far short of official ethical standards, but if even a handful of hypothyroid patients had tried it, the lack of efficacy would have been obvious. Before selling it.

[olsson87 in reply to helvella]

My thoughts aswell. They are playing with peoples life and earning money on us

[Hidden in reply to helvella]

I agree! Unfortunately, I think they seized the opportunity when people were desperate after Thiroyd and TR were discontinued and Thyroid-S unavailable. They saw the chance to make money out of people´s desperation so started manufacturing new brands of NDT which unfortunately turned out not to work as well as their predecessors. Personally, I have more serious doubts about Real Thyroid...for Tru T, it may all be a question of faulty raw material, but in this message from the supplier of Real T it is stated that, in order to be able to sell it as a supplement, the mfg had to add some ingredients and opted for seaweed and potassium iodide...which I would personally never take. There must be hundreds of other ingredients to choose from, so I cannot for the life of me understand why these two.

[olsson87 in reply to Hidden]

I agree. These ingredients are bad for us. Isnt it?

[Hidden in reply to olsson87]

Well, seaweed is basically iodine and its often said that people with Hashimoto´s (which many of us have) should avoid that. Potassium iodide is used to treat HYPERthyroidism...

[IndigoPixie12]

I am sorry this happened to you. It happened to me too. Apparently the first batch of tablets produced in March last year had an issue with them and many people ended up hypo. The only thing that saved me from getting a TSH above 16.8 was the fact that i was still supplementing with 25mcg of T4. I too was very hypo and collapsed at work one day. At that point my tsh was 11. I gave Tru Thyroid another chance and increased to 6 grains a day. 2 months later and 10kg heavier, i was even more hypo.

If you have any levithyroxine, start that immediately. You must be crawling on the ground with a TSH that high......

[olsson87 in reply to IndigoPixie12]

Oh my. Yeah its crazy how they can say its a real good product and make us believe that... Yeah im starting levo now. Trying to get hold on my trusty thyroid s

[Hidden in reply to olsson87]

I think this is about more than just the pandemic. Two of the Thai brands were discontinued in 2019 so before the pandemic. The pandemic may have affected/delayed international flights leading to short supplies, but I read that Sriprasit (the mfg of Thyroid-S) stopped production for quite some time and then restarted limited production preventing suppliers from stocking up. Not sure why...maybe due to African swine fever? But now, I read that the mfg of Thyro-Gold (bovine) cannot get raw material due to the pandemic so it just says "temporarily out of stock" on their website. So not sure what the problem really is...nor have I understood why Thiroyd and TR were discontinued. I have not found many posts about TR, but Thiroyd was a very popular brand so I cannot imagine it was not profitable.

[FrostyKnickers in reply to olsson87]

I've just received some thyroid s I ordered in June and paid double my usual price. At least it's back in production. My supplier is giving up once he's finished fulfilling these orders, I think.

[Lora7again]

Hi olsson87 we haven’t messaged for a while and I did wonder how you were? I have just sent you a pm

[olsson87 in reply to Lora7again]

Hi. yeah i just saw that

[Hidden]

Olsson87,Is there any way you could source T3 to add to levo?

[olsson87 in reply to Hidden]

Yeah i had some at home and hopefully I can get more until i get ndt.. i live in sweden and the doctors here is special

[Hidden in reply to olsson87]

I think most doctors are special when it comes to thyroid disease...they are like robots, just repeating over and over again that levo is all that is needed. They freak out at the sight of a suppressed TSH which is very common on NDT/T3...thyroid patients are not treated according to symptoms but to totally unreliable lab results, too often the TSH only.

[Dottie44]

I ordered Tru Thyroid last July. It came very quickly, within 3 weeks. My usual dose is 120 mg. NDT. These were 30 mg. tablets, so I took 4. Nothing. Took 4 more. Nothing. Days of this, doubling my dose, nothing. I became hypo, and the usual symptoms kicked in.I contacted the supplier, and he never responded to me. I sent the pills back to the return address in the U.S. Contacted my cc company, explained the situation, and they refunded my money.

At least try and get your money back. You cannot live with a TSH like that.

[Anthea55]

That's interesting. My last TSH was 29.5 which surprised me. That was after being on Tru Thyroid.

I had had problems with the new recipe Metavive and eventually when I insisted that I didn't like it, I was told where I could buy Tru Thyroid. I didn't get tested until I had been on Tru for about 4 weeks.

I've now found a private doc who has been able to let me have a proper prescription. I've now been on Erfa for a few weeks and definitely feeling better for it. Hopefully the next set of bloods will be better! We'll see. No clue what's in Tru.

[waveylines in reply to Anthea55]

All so so so shocking.......how have these people got away with manufacturing a bogus product like that????? They have put people at risk and caused people at best ill health. They should be shut down!! Am guessing their so called product has not been inspected by any drugs regulatory body.

[helvella Administrator]

No clue what's in Tru.

Nor have the suppliers!

Very, very poor that it continues to be offered for sale.

[Anthea55 in reply to helvella]

Just a thought - could it contain something which upsets the blood tests, so it's not really a high TSH?

[helvella Administrator in reply to Anthea55]

I suspect you are referring to the impact biotin can have on blood tests? And wondering it it contains biotin or another substance that has a similar effect.

To me that seems unlikely for several reasons. First, patient experiences describe the effects of being severely under-dosed. Second, the impact of biotin, whilst significant, is nothing like the scale we are seeing in blood tests results from those taking Tru Thyroid. Third, the fact that TSH shoots up and FT4 plummets in step makes test interference seem less likely.

My view is that someone has failed to understand how to make desiccated thyroid products.

There are a few scientific papers over the years which identified unexpected results. In one, a procedure was repeated in the dark - and got very different results. Thyroid hormone is susceptible to the effects of light, oxygen and humidity.

Making effective medicines is more like Heston Blumenthal when he goes overboard than heating a can of beans.

[Anthea55 in reply to helvella]

Thanks for that. It was worth a thought.

I understood (though it may not be correct) that I was buying Tru after they had reformulated it. Now that I've found my magnifying glass I can read the contents which are: Thyroglobulin Protein Powder (porcine). Other ingredients: microcrystalline cellulose, dicalcium phosphate, magnesium stearate.

They also say 'These statements have not been evaluated by the FDA. This product is not intended to diagnose, treat, cure or prevent any disease.'

Manufactured in Cambodia.

So that's very much a 'don't blame us'.

There may well be other things that affected my blood results. I'm now on Erfa, so hopefully by the time I take another test it will have settled down. We'll see.

[helvella Administrator in reply to Anthea55]

That FDA statement is on almost everything - except formal, USA approved pharmaceutical medicines!

I had not realised it is made in Cambodia. Seems to question the story line that they make it themselves?

[Anthea55 in reply to helvella]

Magnifying glass out again... Exact wording is 'Manufactured by Natural Noon Co., Ltd. Keb, Cambodia'.

They also give 2 websites, naturalnoon.com and truthyroid.com

I've tried truthyroid.com, but it doesn't come up - maybe my antivirus objects to it. The other one sells soaps etc.

I bought them through a company whose address is Bangkok, Thailand.

[AnastasiaV]

I've been taking Metavive II for 3 years now with great success. Only recently since my hashimotos is aggressive (ATPO is so high it out of range) that I had to up the dose due to progression as half my thyroid is gone now, but it has given me my life back.

Been going to private endo once a year to monitor, <edited by Admin> I feel great.

Levo made me feel more than just a zombie, I had every symptom worsen, while developing allergies and blood in stool, couldn't get out of bed at some point while on it.

Would recommend trying Metavive if you are struggling with Levo, and it brought my TSH right down very quickly.

Hope this helps you or someone.

[Anthea55 in reply to AnastasiaV]

Anastasia, I hope you realise that Metavive changed their formula last year, so what suited you previously may not be so good now. They've added ribonucleotides. Apparently about 10% of us had problems with it. I would definitely have recommended Metavive previously, but no longer for me.

[AnastasiaV in reply to Anthea55]

I'm aware of the reformulation and feel for those of us that didn't do well with it. What has been your experience since they've made changes to the formula?

I've just had to up my dose slightly which still works just as well for me, but do understand it won't be everyone's experience. But even after reformulation I do stand by this brand as it's a bit more reliable than getting something from Thailand, both in delivery times and the contents of it.

Have ordered from Switzerland before, that company supplied their equivalent from Thailand, and although it helped me a lot initially, Metavive is what really made a difference with everything.

Ancestral supplements does a thyroid support one too but I don't have experience with it yet as it's pricey and often is out of stock.

[Anthea55 in reply to AnastasiaV]

What has been your experience since they've made changes to the formula?

Here is my post written when I first had problems with Metavive.

healthunlocked.com/thyroidu...

To summarise, it gave me an upset stomach and hot flushes. I then cut back and increased gradually as recommended by the suppliers, but I could go no higher than 3 x Metavive I. Previously I had been on 5 x Metavive I. Because of this I was receiving much less of the active ingredient /hormone replacement and became more hypothyroid - my temperature went down and I put on nearly a stone in weight.

I finally decided that I'd had enough and was told where I could buy Tru Thyroid which I used for a while. More recently I have signed up with a doctor who is able to let me have prescriptions, so I'm now on Erfa NDT. My weight has stopped increasing, but it's going to be difficult getting it down again. Having to buy new clothes as well.