Had my visit to endo today, six month follow up to when he refused to prescribe Levo in Nov 2014. It went pretty much as I expected. Levels then were TSH 1.6, FT3 4.2 FT4 12.4 and I had a myriad of hypothyroid symptoms (which I'd had for twoish years), none of which were given any credence when discussing my levels and my general health as a Graves sufferer (I think my thyroid is dying off after treatment on Carbimazole).

I'm self medicating on NDT, three months now, up to 1.5 grains and am starting to feel like my old self again! Heart is great, no more palpitations, BP normal (was high), I can think clearly, I think I'm getting my sense of humour back, I have more energy and more general interest in the world and I just don't feel dead inside, which was how I was feeling in Nov. It's five weeks this week on 1.5 grains so I need a test next week.

Bearing in mind it is the same guy who, when I pointed out I could buy stuff on the internet in Nov, said do, has discharged me from the clinic as I am using unlicensed drugs (GP's can prescribe things like Armour, but it isn't licensed??), and is writing to my GP to inform them on what I am doing. He refused to monitor my progress (I did ask) and warned me of possible side effects, heart problems and osteoporosis. I told him I thought my heart was in much greater danger pre self medication.

The endo put my improvements down to being on thyroxine, which he says is a stimulant, and anyone would feel better taking it, he said he would feel better taking it, and warned me I might run into problems overmedicating. I pointed out that as my levels had been right at the bottom of the ranges, it would be a while until that happened. I bet his levels aren't as low as mine.

I also asked him why I was paying into a system that refused to help me......he thought that was a different argument. Convenient. Ordering private blood tests tomorrow.

10 Replies

  • Jacquid, NDT has never been licensed in the UK it but was the only treatment prior to the development of Liothyronine and Levothyroxine and various brands are listed in the US and Canadian national forumularies.

    Because it isn't licensed in the UK few GPs and endos will prescribe it. Many won't know what it is as they are taught that Levothyroxine is the preferred treatment protocol in med school. Those who do know what it is may not be prepared to risk any professional fallout from prescribing an unlicensed drug which may be prescribed on a named patient basis. Some CCGs instruct GPs and endos not to prescribe NDT.

    I think your endo is talking out of his rear by saying anyone will feel better taking thyroxine. He is right that you might run into problems overmedicating, but that happens under a doctor's guidance too. You won't remain overmedicated for long as most people find overmedication very unpleasant and reduce dose or have a blood test to check levels. You are also right, it will take a while to raise your levels from the bottom of range. As long as you have blood tests every 6-8 weeks after adjusting dose there is no reason to be over medicated for more than a few weeks and that won't cause the dire side effects your endo warned of.

  • can't help but think they get strangely scared about us 'over-medicating'...

    must mean it works then.... :)

  • Spare, my endo was quite mild about my FT3 being over range, just said "We don't really know the long term effects of high FT3", which is just as well 'cos I was overmedicated for 7 months as the dose the oncologist prescribed was reduced.

  • doesn't seem to have harmed your braincells :) (or even your high dose D3)

    the bottom line is 'they don't know' - not many will say that 'tho...

  • Spare, respect notched up when he said that. Had previously dropped through the floor (like my FT3 earlier) when he said Levothroxine couldn't possibly cause the symptoms I was experiencing.

  • Yes, just a person

  • I suggest you stop worrying about tests and simply go by how you feel

    it can take a year to feel really well on NDT and NDT is it seems far more suited to Graves and Hashis patients than thyroxine

    certainly my husband,daughter and grandaughters are all much better on NDT

    life was not worth living on thyroxine or T3

  • Maybe the Endo would like to read this explanation of NDT and how it came about that it was in use since 1892 up till the 1960's. Re his statement that levo is a stimulant and anyone would feel better, well - I am one of thousands who got worse and went downhill even though it lowered my TSH of 100 on diagnosis.


    Endocrinologists, like the one above, will bring out all of these 'pronouncements' which are nothing at all to do with NDT but with the pharmaceutical companies 'big sell stories' as a way of persuading that synthroid/levothyroxine was better than NDT. Also, despite 3 annual reminders, the BTA and RCoP did not respond to this article.


    You are more likely not to get osteoporosis or any other things he mentioned with the use of NDT.

    This is an excerpt:

    “Natural Thyroid is Not an Ideal Solution” ? !!!!

    This nonsense really makes my blood boil and my eyes pop out of head.

    Let’s start by doing a little research. If the above statement is true, we should expect to find that the FDA HAS NEVER recalled Synthroid because of problems with stability or potency, and we would expect that the FDA HAS recalled natural thyroid pills because they are unstable, and vary in potency. So let’s ask the FDA about this. What do we find? In reality, the FDA says Synthroid is unstable and varies in potency, while natural thyroid from RLC labs HAS NEVER been recalled for instability or variation in potency.

    FDA LOGO Is Synthroid a Reliable and Stable Drug?

    No, Says the FDA.

    Synthroid was marketed in 1955, but not FDA approved until July 24. 2002 because of a “history of potency failures…indicates that Synthroid has not been reliably potent and stable.”– United States Food and Drug Administration Letter to Synthroid Manufacturer, Knoll Pharmaceuticals, April 26, 2001 (link )

    Unstable, not of Consistent Potency from Lot to lot

    Here is an FDA document August 14, 1997, Docket No. 97N-0314, which says:

    “The drug substance levothyroxine sodium (also called Synthroid) is unstable in the presence of light, temperature, air, and humidity. Unless the manufacturing process can be carefully and consistently controlled, orally administered levothyroxine sodium products may not be fully potent through the labeled expiration date, or be of consistent potency from lot to lot.


    Armour was recalled once because it had lost potency within 2 years and was reformulated in 2009 and the patients didn't like the change.

    Naturethroid by RLC labs and Westhroyd in 75 years has never had a recall.

  • Thanks for the supportive comments, I intend to continue with what makes me feel better, regardless of the medical profession.

    This site has helped me much more in six months than they did in seven years.

    Many thanks to you all xxxxxx

  • Jacquid, sounds like you are doing the right thing and going in the right direction.

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