NDT

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Hi,

Saw a specialist last night who was less than helpful sad he wanted to investigate whether I had actually needed thyroid meds in the first place when I was diagnosed eight years ago. Im still symptomatic on levothyroxine and liothyonine helps with the fatigue but causes palpitations.

I asked the specialist about NDT which is something he said I could try after the above tests have been done.

My question is, does anyone else take this and does it have positive effect on energy and hair loss?

The endo also said it was expensive and unavailable on the NHS in the UK- do any UK patients happen to know how much this is likely to cost me?

Thanks in advance

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13 Replies

  • Posted

    If you are experiencing palpitations you are probably overmedicated, post your blood test numbers so that we can offer sugestions.

    I felt terrible on Levo for 2.5 years, changing to NDT gave me my life back. So a brief answer to your questions are, yes very positive effects on your energy - but probably no on hair loss - sorry about that.

    If you live in the UK you can buy NDT from very reputable sources in the US - ridiculously we (who live in the US) cannot do this! Go figure. My NDT (Armour) costs me about $23 for 100 tablets (of 1 grain, 60mg - which is equivalent to 100mcg Levo)

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    • Posted

      Hi LAHS, I haven't had blood tests done recently as they are not sure where to go with everything yet and still trying to get me to 'feel a bit better' before testing, but when i do i will post. Difficult to know what's going on when i am expeirence hyper and hypo symptoms at the same time - think bloods will be needed soon when they stop changing the dose!!

      I think NDT would be the next step for me - I have since been told I could end up paying around £100 for 100 tablets (not very impressed with this!!). Do you have the name of the place I could source it from in the US? Obviously, if I do find NDT works for me I don't want to be paying ridiculous money for it, i would greatly appreciate it if you are able to give me this info!!

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    • Posted

      OK, here are some of the NDT's:  Armour, Thyroid, Naturethroid, Westhroid, Qualitest, Nature Gold.

      If you Google "Buy Armour Thyroid online"  (or "Buy Naturethroid.." etc) You will find a wealth of possibilities. There used to be one in Redwood City, California who couldn't sell to US citizens but would sell abroad (that was very annoying for me). There is  a big International Pharmacy in British Columbia, Canada, that is the one I will use should my doctor think she would like to try something new on me. No more experiments on me, I have to have my NDT because it works, there is no way I will ever go back to that toxic Levo.

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    • Posted

      Hi LAHS thanks for that info- will keep a note of it. I can totally relate about being experimented on and it's vile. The endo couldn't understand why I burst into tears at his suggestion of going back to levothyroxine alone, then gradually reduce the dose!! (I can barely function, pile on weight and feel cold even on 125mg. The idea of having even less than thay terrifies me!) Even my Gp thought that didn't sound like a smart idea and he's no expert! Gp seems to be understanding what my body seems to need and this endo has really left me disheartened. Hope the NDT request goes through and works for me too x
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    • Posted

      That is so funny, I had exactly the same experience. My first GP was intelligent and happy to learn about thyroid stuff. We fiddled around with my dose for 2 years, he let me self adjust my dose and was willing to send me for blood tests any time I thought it was necessary after I had tried something. I got to a perfect dose on that pill (Forrest Pharma Levo - yes I wrote Levo!) and remained perfectly well for 5 years until he retired. Then I reverted back to the Endo who threw up her hands and said, "you cannot remain on that dose (130mcg) your TSH is far too low!" (it always has been). She put me on a different brand and lowered my dose, I was then ill for 2.5 years. Again she said that it was probably because my dose was still too high and lowered it. It was then that I started studying this subject. After 2 months on this new low dose I felt as if I had a couple of weeks to live! I thought I had better use them wisely - so I dragged myself off to the insurance office (Americans always listen to the people who are funding them) and told them that I was not paying to be killed so get me a sensible doctor immediately. And they did! 

      So yes, I prefer a GP who is enthusiastic to learn something new to an Endo who is following some misguided protocol they are being fed by the American Thyroid Assoc - whose research, in turn, is being funded by Big Pharma.

      Wow, sorry to go on but your post read just like my own history.

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    • Posted

      How strange!! I cant believe how poorly understood this condition is bearing in mind how common it is! I wrote to my local MP recently regarding the diagnosis of these conditions and the limitations that the NHS puts on treatment, I received a response from the House of Commons yesterday saying how most people are effectively treated on levothryoxine alone and there was apparently lots of research supporting this. It wasn't really the letter I needed after breaking down at the endos office!! I recently took two weeks off work when they reduced my dose and like you felt like I was about to go into a coma. I don't understand how this endo can suggest that I don't need thyroid meds (especially when my mother has thyroid problems too, I find it too much of a coincidence for it to be a misdiagnosis). When he said I may never find the cause of my tiredness my husband had to walk me out of the office as I was so distraught at the lack of understanding and that its so much more extreme than "just tiredness". 

      My GP isn't the most knowledgable but he is like you say, willing to try and listen to my suggestions. He kindly agreed to do all the tests requested by the private specialist for free for me (which is usually unheard of with the NHS). Such a battle isn't it?! I'm still fighting anyway smile

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    • Posted

      Good for you writing to the MP. I am sure there are many people who are effectively treated on Levo - but how many? Just the other day I signed a "lessor known"  group who were collecting signatures to do something similar and that was a little group of six thousand! We need to see the figures, I am convinced our percentage is at lease 25% and that is a highly representative sample. And what do they mean by "effective", they probably take the doctor's report of those having "normal" bloods.  And we all know what that means, anything but normal.
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    • Posted

      Wow 6000 is a lot of people! Yes I do agree that probably the vast majority of people do well enough on levothyroxine (and I think some of these people are probably symptomatic but just told their bloods are normal and things like chronic fatigue syndrome are causing their tiredness, which is what I was told for years and didn't think to believe otherwise). But even though they seem to recognise that not everyone does well on levothyroxine I don't understand why they don't have other options and just expect the so called "minority" to suffer?! If people died from this condition they might do something about it but it's all about cost effective treatment and they aren't bothered about helping a "small" group of people. Such a strange world we live in.
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    • Posted

      Hello LAH & Sayhitocaz;

      There is also a Thyroid S made in Thailand that can be ordered via Amazon.  I know someone on it.  It is an NDT.

      LAH - I did not know you are in USA, but KMART Pharmacy used to order for me Armour when I was on it.  Some pharmacies will order it in for you as a special request, Walmart also.

      Shelly

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  • Posted

    Hello Sayhitocaz:

    I am in the USA and I was on it for many of years and it worked on me somewhat.  I can't convert T4 so that is why I went off of it. I am only on T3 alone.

    NDT, Armour Thyroid is availble online and both Barbara and LAH take it and are in the UK.  

    So give it a try, you may feel better on it as it is a natural med made from a pig's gland which is close to ours.  NHS does not buy it as it is not a patented medication. You can't patent a pig.   However it has been around for ages.

    Regards,

    Shelly

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    • Posted

      Thanks Shelly, after I have had all my other tests done (including cortisol) I think this would be the next step.
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