Has anyone discussed an alternative to Levothyroxine? It's the UK preferred Thyroid meds, I was told some doctors are giving NDT

[ThyroidWilma]

I was just told my messages are not appropriate. But I mean no harm I'm just asking others what they think

[shaws Administrator]

It is the British Thyroid Association's favourite. They swear by it and many do fine but there are exceptions and most are on this forum. They also recently withdraw T3 (even though there were a couple which could be prescribed on a named-patient basis but doctors wouldn't take responsibility.

The guidelines also state that levothyroxine is the preferred prescription by the doctors (Of course) I wonder what they'd do if they were hypo and not functioning as they normally would have ,or had a wife or family member who was suffering on levo..

Some private doctors will prescribe NDT but you'd have to pay for their consultations plus pay for NDT yourself. It used to be prescribed on the NHS if levothyroxine wasn't performing on the patient as it is intended to.

[ThyroidWilma in reply to shaws]

Yes, I've tried my doctors they don't agree with NDT, don't get me wrong they are great but not convinced NDT will work.

Ive been stuck in mental anxiety limbo for years when I partied every weekend to forget my mind is same but now I've been nearly 2 weeks off all meds I've probably got 2 more before I start noticing things but I can't express enough how free I feel but new job, feeling confident, lost weight it could just be the placebo effect...

My mind, Thyroid kept me a victim hence, anxiety. Depression insomnia.... You have to say one day this isn't working, I don't want more meds....

Sorry if I've not made sense but my mind has so much in it I've decided to take a stand and restart xx

[monserrat in reply to ThyroidWilma]

Look, Levothyroxine is T4 and some people do not convert T4 the right way. T3 keeps increasing (I think in the blood) but does not go to the cells perpetuating the hypothyroidism. That can be traced having blood tests for Rt3 (reserve T3); the T3 it just keeps increasing , then is when one knows that T4 is not for you.

[ThyroidWilma in reply to shaws]

NDT will not be regulated in UK for some time due to the cost. Doctors say it only works for some so no budget.... But Thyroid disease is huge now they need to step up and stop thinking of the thyroidectomy as a good cancer to get as you can survive... In a few years things will change but it's slow

[Angel_of_the_North in reply to ThyroidWilma]

Don't understand your comment - NDT is already not licensed in the UK (nothing to do with cost), but you can buy your own quite cheaply from Thailand. A GP can prescribe it on a named patient basis, but that means the GP taking responsibility for the patient's care instead of just blaming NHS guidelines if something goes wrong (so they won't do it).

[ThyroidWilma in reply to Angel_of_the_North]

Yes you can buy else where in the world but not in the UK.

Sorry, wasn't being funny the questions I asked were ones I've had for a long time and only just found your site.

I lost 3 months as holidays due to my skin looking like leprosy and had to be flat bound, I've had other damage from other meds but all came from levothyroxine.... I don't mean pick a fight I'm very supportive and to my downfall probably yo assertive when chatting

[Treepie in reply to ThyroidWilma]

You can buy NDT in the UK- with a private prescription.

[monserrat in reply to Angel_of_the_North]

I bought it from Thailand, but I did not trust the quality... the girls were very kind and send me some little presents, it was nice to deal with them. But I personally prefer to buy it from some pharmaceutical firm I can trust the quality of the product.

[monserrat in reply to ThyroidWilma]

I do not think it works for some, I think it works more they want to admit (invested interests) = the cost of people getting thyroid cancer against the cost of people being sicker for longer with Levothyroxine because they do not convert to proper T3, the one that travels to the cells...

[ThyroidWilma in reply to shaws]

I think America distributed desiccated Thyroid NDT but I've not been brave enough to do it on my own yet

[monserrat in reply to shaws]

My partner and myself tried levothyroxine in 2013 with bad effects, both of us. He lost a lot of weight (he's a very slim person as it is, although he's hypothyroid). I started with my right leg swelling, so much so that I had to postpone surgery for some weeks even after I stopped taking levothyroxine. Our Rt3 raised a lot when taking levo... In Australia doctors do not want to hear about NDT. It is not even available here... I am lucky I met a doctor from Canada (endocrinologist) who does not mind us taking NDT. I have to buy it on line and it is not cheap. Be careful not to take too much!!! Some books and forums recommend to increase and increase... be careful with that. I feel better now that I am 2 grains since last week. Still the blood tests in 3 weeks will tell me then.

[Hidden]

ThyroidWilma

Google Campaign ITT improve thyroid treatment. Kitti1 started it.

[Clutter]

ThyroidWilma,

Who has told you your messages are not appropriate?

[ThyroidWilma in reply to Clutter]

I tried to reply and the screen froze saying message wasn't appropriate

[Hidden in reply to ThyroidWilma]

The site does have some buggy moments like this - don't take it personally just exit and try to repost the comment. For example: it won't allow me to post a link to Thyroid U.K.

[ThyroidWilma in reply to Hidden]

Thanks rusty, think I got paranoid bring my second post and being a little assertive I thought OMG I've upset someone xxx

[Clutter in reply to ThyroidWilma]

ThyroidWilma,

Unless you were swearing it was a site glitch and nothing to do with what you posted. It's a flipping nuisance at times.

[helvella Administrator Thyroid UK in reply to Clutter]

I have had it happen numerous times - though not so much recently.

A major pain when we edit someone else's post (possibly for a very minor issue like a mistake in a link) and simply cannot get it accepted. If it was OK before, why not now?

[ThyroidWilma]

That's really good to know it was my hairdresser that advised going through Mexico website as she is Underactive hasjimotos and something else she found eating very little helped weight loss and gluten free.

I'd never heard Thailand had anything, thanks do much, is there a website,?

You see unless I ask these annoying questions to some I'll never get to where I need. Thanks so much for your help and I'll research from here.

Do Thailand have anything for alcohol induced ptsd? Think if I dort that and Thyroid out I'll be Mary Poppins

😘💋

[Hidden in reply to ThyroidWilma]

I can only agree with what others have said. In Belgium, the country I know best when it comes to thyroid treatment, NDT is prescribed by a few doctors, but patients have to pay for it out of their own pocket and it's both expensive and not working optimally anymore (at least not Armour or Erfa Thyroid, the two brands of NDT available in Belgium).

For the past couple of years, I have been ordering NDT from Thailand at a fraction of the cost of prescription NDT. It also seems to work much better than the brands I can buy in Belgium.

[monserrat in reply to Hidden]

Armour changed their formula or something like that and people complained a lot about it. I takeNature-throid. As I said previously it is better to be sure of the quality when it comes to health.

[Angel_of_the_North in reply to ThyroidWilma]

You need to start a new thread asking people to PM (private message) you with details of reliable online suppliers for NDT without a prescription - Thailand, Mexico or wherever. There are three Thai brands: Thiroyd, Thyroid-S and TR Man.

[MsTurboKitty in reply to Angel_of_the_North]

I cannot take synthetic thyroid medication. It does NOTHING for me. This site will help you find a doctor that will prescribe NDT for you. The site is in the U.S.A., as am I.

getrealthyroid.com/

[Hidden]

I had to fire one GP before getting my NDT...even though it is readily available where I live. There is simply widespread ignorance - not just regarding NDT but thyroid treatment in general! Thats why the forum exists - we have a widespread disease within the healthcare system itself.

[Jazzw]

Out of interest, how much thyroxine were you in before you stopped it, ThyroidWilma ? As someone else said - may have been greygoose - you probably weren't on enough in the first place.

It's a weird phenomenon - we see it here from time to time - that when people come off levothyroxine they experience a few weeks of feeling much better. It could be because the pituitary, sensing the drop in thyroid hormone, gives the thyroid a big kick to up its own production temporarily. But it doesn't last... So in another few weeks it is quite likely you'll start to feel the effects of not having enough thyroxine in your system.

Anyway, as you've realised, levothyroxine isn't the only hypothyroid fixer, nope. If you want to know where some of us get our NDT supplies it's probably best to start a new thread and ask for replies by private message.

Are you in the U.K.? If so, the other thing that you might find very helpful is getting private blood tests done, so you know more about what your thyroid hormone levels look like.

[ThyroidWilma in reply to Jazzw]

Hi, I started a new thread but it was late so probably hear tomorrow... I'm willing to try NDT as without thyroxine, I no longer need Montelucast, omeprozal, citalipram 40mg although taking 20 every other day, pain. Killers, antihistamines with sedative. I'm sleeping fine well as fine as I can as Im active in my dreams / bed all night... I never stop talking 😂

I'm just tired and no that over past few years I've been getting more meds and more meds and I never feel right. Breathlessness / sweating till the water drips down my front hair soaking. I always remain upbeat but my mind is on fight, /flight 24/7 past 2 weeks I've felt content, happy but got a new job could be that brought my confidence back.

I was told to accept the side effects, it's just what it is bug it's controlled my life past 8 years.

Thats why I joined thought it was time to ask the questions try something else.

If you have a NDT contact I'd be delighted xx

[ThyroidWilma in reply to Jazzw]

Sorry I'm on, 100, nurse said to me oh,, 100 that's quite low so that's what made me think stop see what happens

[jivemonkey1]

I went to the peatfield clinic (google) and was prescribed NDT called Metavive II. Difference between Metavive I and II is 15mg or 30mg dose.

They are from the natural choice company the-natural-choice.co.uk/Me...

I have only ever been on NDT so cannot advise on the difference only that many people who dont get on with levo say they are much better ...hope this helps

[Swanagegirl in reply to jivemonkey1]

Hi,

So this is the real stuff ie NDT not just a thyroid supplement?

Site looks good . Can you order without prescription ?

Does anyone else have good or bad experiences with this product ?

[IvanK in reply to Swanagegirl]

Re Metavive II Porcine Thyroid in Jivemonkey's link: my understanding of such supplements is that no prescription will be needed for such readily available products, simply because they'll contain no Thyroid hormone whatsoever.

Such supplements can be useful if your own Thyroid Gland is still working reasonably okay, but slightly in need of extra help.

But if you've been taking Levothyroxine at a significant dose for years, in many cases any Thyroid products without actual Thyroid hormone will be of little practical help. Go carefully. - Good luck.

[Serenitee in reply to IvanK]

What do you mean that it contains no thyroid hormone whatsoever?

Is this brand not the same as NDT then?

[helvella Administrator Thyroid UK in reply to Serenitee]

I believe that some of the over-the-counter products such as Metavive do contain thyroid hormone. This has been reported several times in research (e.g. in the USA) - that some products have substantial thyroid hormone content. Some, though, appear not to contain any thyroid hormone.

Any product for which thyroid hormone content were claimed would probably require official approval/licensing and, I suspect, would no longer be able to be sold over-the-counter. This will, obviously, depend on the country as each has their own regulatory regime.

[IvanK in reply to Serenitee]

Hi Serenitee, To the best of my knowledge, so without firmly contradicting what Helvella wrote, most Thyroid supplements available without-prescription, for eg. such as eBay & Amazon sell, won't have Thyroid hormone. Not unless that's stated on the label. They have Thyroid Glandular tissue, which is hormone-free.

Regarding exceptions, it would be wise to confirm with the company producing the products about whether any actual hormone exists. They owe it to customers to clarify that.

From personal experience, I once abandoned Levo & took a product called "Raw Thyroid Glandular" by Natural Sources. Hormone-free. Felt good for the first 2 to 3 weeks as my own thyroid tried to kick in. After nearly 5 months I felt lousy. My TSH had shot up to 42! I returned to Levo despite side-effects from that. - Regards.

[helvella Administrator Thyroid UK in reply to IvanK]

We have seen every possibility put forward and discussed over the years:

Contains no thyroid hormone at all;

Contains T4 but no T3;

Contains T3 but no T3;

Contains some thyroid hormone but far less than prescription-quality desiccated thyroid;

Contains more thyroid hormone than prescription-quality desiccated thyroid;

Contains inconsistent levels of thyroid hormone.

Uncertainty makes this a difficult area. The companies might indeed owe it to their customers but in general, they won't because to do so would force them into becoming prescription-only products.

ncbi.nlm.nih.gov/pubmed/157...

ncbi.nlm.nih.gov/pubmed/268...

[IvanK in reply to helvella]

Thanks. I appreciate why some companies are reluctant to clarify such info on their websites. But there seems no harm in making contact via email & putting a question to them.

Those who don't include hormone may have little incentive not to make that perfectly clear. If the reply is less unequivocal, then there may well be some hormone.

Still, as most of us appreciate, all these readily available Thyroid Glandulars are very different from products like Thiroyd (produced in Thailand), which definitely contain stated amounts of thyroid hormone.

For those less knowledgeable & already reliant on higher levels of Levo, I augur caution with any product that doesn't state precise hormone levels. - Regards.

[helvella Administrator Thyroid UK in reply to IvanK]

A company is likely to be very averse to putting such information in any permanent form - because it could be used against them.

Mary Shomon posted this:

verywell.com/over-the-count...

[Serenitee in reply to IvanK]

Thank you for the clarification. That's really helpful. I've been taking it for a few months and not felt much difference.

Just starting to research alternatives now.

[jivemonkey1 in reply to Swanagegirl]

From what I was told this is the real stuff and the label and site says the same...also it was suggested by Dr peatfield who is highly regarded by many for his thyroid treatment.

[helvella Administrator Thyroid UK in reply to jivemonkey1]

What does it say on the label that convinces you it is "the real stuff"?

[ThyroidWilma in reply to helvella]

I'd get it tested before I believe any of it too many fads out there your not to know the difference

[Serenitee in reply to jivemonkey1]

Jivemonkey1, have you been taking it for long? Has it helped you?

[Angel_of_the_North in reply to jivemonkey1]

Metavive is not NDT, it is a thyroid glandular with no specified hormone levels in it. If they defined the amount of T4 or T3 in it, it could not be sold OTC. It is much more expensive than Thai NDT. It could have lots of hormone, it could have none and it could vary from batch to batch.

[helvella Administrator Thyroid UK]

Do we know it is the same powder from the same supplier?

If it says "Thyroid USP" on the list of ingredients, that simply means that they are claiming it conforms to the requirements of the United States Pharmacopeia. The powder might come from different breeds, with different diets, etc., with all sorts of impacts. So superficially it might be "the same", in reality there might be significant differences.

(Not for one minute claiming that any differences do exist, or that any such differences make the Thai products in any way inferior. Just trying to make it absolutely clear.)

And I believe that ERFA thyroid sources it desiccated thyroid powder elsewhere than the USA makes. Have some suspicion that it might even be European.

[Nonameavailable]

Im veggie so not interested in natural thyroid, but I wonder if we lump everything in the one basket at times and blame it all on thyroid/ meds etc.

Having done a wee bit reading and as someone with 30yrs of thyroid shit over and under, now PA I suspect there is underlying stuff as well. And wondered if anyone been tested for adrenal fatigue? Goodness knows we are stressed by our health even before life circumstances . And you appear to have suffered significantly with dreadful symptoms.

[ljk1 in reply to Nonameavailable]

If you read a bit more you will find lots of info on adrenal fatigue, it's very common with thyroid problems, it also crosses over into blood sugar levels and diabetes and cholesterol levels,to name just a few!😊

[Nonameavailable in reply to ljk1]

It amazes me that doctors think a pill or 2 a day will make you good as new!!!!!! And how they hate it when it doesn't work .. lol

[Pamela0106]

I've discussed it many times over with my NHS doctor and have been refused anything but Levothyroxine. I think it's a real shame our NHS are being restricted in the way they are and that cost continues to be put before health.

The below petition is about the improvement of thyroid treatment in general but focuses on the removal of T3 and the fact there is no alternative being provided. If you haven't already it would mean the world if you would sign and share it far and wide. We desperately need more signatures.

change.org/p/itt-campaign-g...

[ljk1 in reply to Pamela0106]

Signed weeks ago and left comments😊👍🏼

[SpicyLotus]

I think you need to figure out where your anxiety is coming from and deal with it. Using your body as a guinea pig for different drugs and lifestyles, hoping to hit the right cocktail of drugs, is not going to work without a price to pay on your health. Perhaps what you needis a therapist, someone you can talk to, to figure out what is producing your anxiety in a proactive and re-constructive way.

[monserrat]

Do you have any proof that they use the same USP thyroid powder? How can know for sure?

[Pepekins]

Saying this message is inappropriate just adds fuel to the 'cloak and dagger' attitude surrounding NDT.

[helvella Administrator Thyroid UK in reply to Pepekins]

Not if you understand that HU rely on a severely broken third-party service to assess posts for suitability. It is purely a computer program - which doesn't understand what it is doing.

I regularly have problems when I make a post and then, minutes later, go to make a small change (a typo, a link with a following comma) and the updated version gets rejected. Nothing significant has changed but I cannot get past this computer program.

(Not as bad as it used to be.)