NDT Starting dose & Potency (versus Levo). - Thyroid UK

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NDT Starting dose & Potency (versus Levo).

knackersyard profile image
18 Replies

I first tried NDT in 2009, but had to stop after a few days due to immediate side effects (dark saggy bags around eyes). I tried on 4 separate occasions to re-start during 2010, always with the same result.

Recently, after private tests (Blue Horizons) showed that 100mcg Levo gave me zero increase in fT3 and high Reverse T3, I informed my GP that I would try my own thing.

So I tried NDT (Thiroyd) again at 1/2 a grain.

On day 2, 3 & 4, the eye bags were there (not terrible, but there), but my eyes were so dry, it was unbearable! That's when I stumbled across this thread :

healthunlocked.com/thyroidu...

I was fascinated by some of the content. I know we're not all the same & there's no absolute right & wrong, but I thought it made sense to me.

So I tried 2 grains. Day 7 today & so far no side effects. May be coincidence, but I've had the best sleep I've had in years.

I plan to stay on 2 grains for 6 weeks, then do a blood test.

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Lozzer66 profile image
Lozzer66

I had a read through...interesting ! Ive been self medicating for 8 months Personally I stopped levo for a few days(this was advice on a fb group!) and then started on half a grain then 3/4grain then full one ,then raising a quarter every 3or 4 weeks ..I got up to 3 grains but my latest bloods were still hardly on the scale.I felt reluctant to raise (again confused over the conversion scale 75mg of levothyroxine had at least put me half way on t4/t3 ranges !)So taking 3 grains ?What would that be equivalent to in levothyroxine? ?..sounds like a lot...Anyways Iwas still hypo on 3grain (been taking temperatures and still low so therefore hypo) So I decided a few wk ago to drop back down to 1 grain and add an adrenal glandular to try adress adrenals first as I think maybe that's why I'm not utilising my ndt properly! ?...I will start to raise up again slowly ....it's all such a balancing act and all so individual! I wish you all the best ...I'm interested to know how you go on.

knackersyard profile image
knackersyard in reply toLozzer66

Thanks Lozzer

Surprised to hear that 3 grains of NDT has done less for you than 75mcg Levo! Which brand of NDT are you using?

Mine is currently "Thiroyd" from Thailand. Very cheap.

Lozzer66 profile image
Lozzer66 in reply toknackersyard

Hi knackersyard ..yes that's exactly the one i buy from Thailand ....that's why I think I need to sort adrenals out first as they're stopping the ndt from working like it should...aparantly ndt highlights an adrenal problem!..I'm sticking with it though !..Also I think I need to adress my vitamins as even though mine are in range I found out since being on this forum that there's certain numbers on the range that you need to be at (I guess just like t3/t4 ranges!)to feel better and to utilise the hormones better!

knackersyard profile image
knackersyard in reply toLozzer66

When I first tried NDT in 2009 & 2010, I had really bad side effects. My adrenals were absolutely tanked at the time. I know, because I did a Genova Dx Saliva test. The results were horrendous!!

I'm in much better health now, which is maybe why I'm doing better (only after increasing to 2g though).

in reply toknackersyard

Can I ask what you have done for your adrenals?

knackersyard profile image
knackersyard in reply to

A few lifestyle changes. Cut out certain substances, reduced alcohol, go to bed on time. Better diet.

I did look at Hydrocortisone, but decided against it.

in reply toknackersyard

Can I ask why..?

knackersyard profile image
knackersyard in reply to

Why I didn't take HC?

Side effects.

I avoid medication & doctors like the plague.It took me 10 years to realise I can't ignore my Thyroid. I accept that now.

in reply toknackersyard

OK, thank you...not sure how to interpret this since I am under the care of a so called Hertoghe doctor in Belgium who prescribes all natural hormones, including HC or, if needed, prednisolone or Medrol, but accept your opinion...good to know that you can reverse some conditions using natural remedies only...!

knackersyard profile image
knackersyard in reply to

Sorry, I didn't mean to scare you. There are very few medications that don't have side effects.

I was living fast & doing things I shouldn't have been, so I had it in my own power to make changes. I appreciate that some are less fortunate & suffer low cortisolthrough no fault of their own.

Good luck with your treatment.

Lozzer66 profile image
Lozzer66 in reply toknackersyard

knackersyard that's brilliant your are doing good this time!How did you sort out your adrenal issues??..I also tried ndt a few years ago..(erfa) when I had first been diagnosed with hypothroidism and had only been taking levothyroxine for about 6 months or so. ...I don't know how I did it but I managed to persuade a new young gp to write me a script which I collected from a pharmacy a few miles away.The gp told me (according to whatever conversion table he was using)that as I was on 75mg of levothyroxine that I should start the very next day on 2 grain of ndt which I did and carried on doing for a few weeks. Unfortunately it sent me int a more 'hyper mode'as I quickly started dropping weight so went very thin and started losing hair,felt anxious, couldn't really sleep,felt wired ,had the runs etc so was sent to an endocrineologist who told me to get off 'that rubbish' immediately as it would make me very ill and put me back on levothyroxine. ..which I took as I was new to it all and just did as I was told!However when I wanted to try again a few months ago I went back to the same gp who refused point blank to let me have it again saying he was wrong to even let me have it back then and he only did it as he had been new at the time and hadn't really been sure about what he was doing!!That's when I ordered from Thailand! Have you done an adrenal saliva test recently?

knackersyard profile image
knackersyard in reply toLozzer66

A few lifestyle changes. Cut out certain substances, reduced alcohol, go to bed on time. Better diet.

I did look at Hydrocortisone, but decided against it.

That's a shame about your NDT story. Maybe you weren't converting Levo (or not well), so when you switched to NDT, it was clearly too much. If you knew then what you know now, you could have just reduced your dose yourself.

Good luck with NDT this time!

I had my thyroid removed 18 months ago I wasn't on any medication prior.

I started on Levo for 8 months it was awful I now take NDT from Thailand,

I take 2.5 grains per day. I sleep well and feel a lot better now. Your 6 week plan

is good.

knackersyard profile image
knackersyard in reply to

That's interesting that you manage on 2.5 grains with no Thyroid.

I'm officially "sub clinical". Both T3 & T4 just inside range, with TSH of 11.

On 2g at the moment, I will be monitoring closely (symptoms, temps & blood tests).

nightingale-56 profile image
nightingale-56

knackersyard I went to private Endo last week and told him of my attempt to try NDT about 2 years ago, by lowering T4 and adding in a bit of NDT. He said that was the reason I had terrifying anxiety and to just make a straight exchange, which for me at 75mcg T4 and 6.25 mcg T3 would be about 1 1/2 grains. Hope to try this when I have managed to get some NDT.

knackersyard profile image
knackersyard in reply tonightingale-56

Thanks j_bee

I actually quit Levo months ago, as 100mcg did nothing for me & blood tests showed Reverse T3 and zero increase in Free T3.

Having had a few issues on 1/2 a grain & reading the thread I posted, I just went straight to 2 grains.

Day 8 feel fine. Well I don't feel anything really, except I've had much improved sleep.

nightingale-56 profile image
nightingale-56 in reply toknackersyard

So glad you posted this. It has allayed my fears of going straight over to NDT when I manage to get some. Glad you are doing well so far. Keep us posted please.

knackersyard profile image
knackersyard in reply tonightingale-56

I'm delighted to help. As I said, I was lucky to have stumbled on an old thread. It may not be right for all, but it definitely seems to work for me, so I hope it works for you too!

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