NDT

[Marmie]

Off to GP to discuss NDT however advice appreciated on how to approach him. On 100 of Levo but have symptoms of hypo, anxiety, palpitations, low mood etc. My adrenals are a problem too. Is it lack of conversion to T3 upsetting adrenals or high cortisol affecting T4 conversion. (Daily cortisol 42.0)? Last test results show ferritin, B12, folate Ok. TSH at 2.17 but liver function raised to 124 (35-105). He has done Addison test so was aware of Possible adrenal problems, but when that was clear, we never discussed adrenals further. If GP does not recognise adrenal problem do I just ask for T3 - which I have never been tested for? Any advice appreciated...

[helvella Administrator]

I suggest you do not call it NDT but rather prescription desiccated thyroid.

[Jazzw]

Well, a raise in T4 (levothyroxine) might be the best you get - and it would be worth getting even if you get nothing else. Many hypothyroid patients feel better with a TsH under 1.0.

And when you say your B12 and ferritin are ok - is your B12 over 500 and your ferritin over 70? Cos if not, they're not ok.

[Marmie in reply to Jazzw]

Yes to both! Guess I am lucky, just don't feel it!

[jezebel69]

Hope you have more luck than me. When I asked about it I received a letter in the post from my surgery (2 A4 pages) listing the evils of NDT. I've never asked since........As you can imagine I dont get much thyroid support there lol

[humanbean in reply to jezebel69]

I'd love to know what was on those two pages! Could you scan them into a computer and post them on here? Do you know the source of the information? Is it referenced?

I'm self-medicating with NDT, and I would still want to self-medicate even if I was taking levo because I want to be able to dictate my own dosage. I have mentioned about me self-medicating to my doctor but I have given no details - she probably thinks I'm taking levo. It would be nice to know what the medical profession thinks they know about NDT.

[jezebel69 in reply to humanbean]

I'll try and dig it out for you - was a good few years ago when my battle had only just begun. I was totally green so just accepted it.

[humanbean in reply to jezebel69]

For anyone who is interested...

Following some private messages between jezebel and myself, we have established that the document received was this one :

british-thyroid-association...

[nightingale-56 in reply to jezebel69]

Perhaps your GP would like a list from you of the evils of Levothyroxine jezebel!

[jezebel69 in reply to nightingale-56]

Oh j_bee what a wonderful idea

I'll get on to it straight away

[humanbean in reply to jezebel69]

I'll give you some ammunition :

mhra.gov.uk/home/groups/pub...

The above document is an amalgamation of the Yellow Card reports patients and doctors send to the MHRA about side effects/adverse effects.

It includes, in the "single active constituent" columns, the reports received for levothyroxine. In the multi-active constituent" columns it reports on Armour and Erfa.

There is a similar report for liothyronine (T3) :

mhra.gov.uk/home/groups/pub...

And that report includes Armour and Erfa too.

It is noticeable that there are no fatal reports for T3 at all, and the only fatal reports in the levothyroxine report are for levo. There are none for Armour and Erfa

[Ruthi]

To be honest, I would consider not asking for NDT at this stage. 100mcg levo is not a big dose, some folk are on 300, and your TSH isn't optimal yet. Ask instead for an increase in Levo to 125 - most people do feel OK if they are on sufficient levo to get their TSH down to around 1.0.

Why do I say this? Well, you are pretty unlikely to win the NDT battle. Whereas if you ask nicely, even for a trial, you might well get the extra levo, and it might well be all you need.

If you had a TSH around or even below 1, and still felt bad it would be time to start thinking about T3 or NDT, of course. But you would probably end up either without, or buying it yourself and self-medicating. Life is much, much easier if you can get the result without having to enter into a battle with your GP!

GPs may be woefully ignorant, but they think they have our best interests at heart. And NDT frightens them!

[Marmie]

That would not be a problem as keep increasing/lowering dose between 100-150, and he goes with how I feel. (He is very good). I guess he will offer anti depressants again (have been off for six months but honestly feel better on them, it just feels another chemical for liver to cope with?) I had written to ask about NDT and this meeting is as a result of him consulting with Endo, so will be interesting to hear outcome of that conversation.

[humanbean in reply to Marmie]

Rather than going on an anti-depressant, look into 5-HTP. It can be bought online or over-the-counter and is far better than any prescribed anti-depressant I have ever taken. (You mustn't mix anti-depressants though, wherever they come from - with or without prescription.)

Go on to Amazon and look at the reviews. I suggest starting with 50mg per day as an experiment. For a lot of brands the lowest dose they do is 100mg and that is too much for me, it makes me jittery.

Prescription anti-depressants do something to the way that serotonin is recycled in the brain, which would be great if you had enough serotonin to start off with, but if you don't then they can't really work.

5-HTP actually increases the amount of serotonin you have. They work much quicker than prescription anti-depressants. They are also much easier to come off of too, if you choose to.

[Jazzw in reply to Marmie]

So if you don't mind me asking, why don't you stay on a higher dose of Levo? It seems clear you need it.

[Marmie]

Well, whether I take 100 or 150 it does not make great difference to how I feel. My own gut feeling then is "less Levo is best"?? Pyschological maybe. Anyway no joy to NDT. Royal College of Physicians do not allow it? In future Will only be measured on TSH apparently? Vitamin D low so have script for mega dose weekly, plus daily tablets. Will look into 5-HTP as per Humanbeans suggestion. Adrenals... well, they need to fight on another day