Anyone gone from NDT back to Levo & Liothyronine with success?

[Island_hopper]

I have hashimotos - tried Levo for first 8 months and was dreadful on it. Have been taking Nature Throid for 18 months 2.25 grains a day. It gets more difficult each time to order the NDT from online pharmacy and I managed to get to see an NHS endocrinologist this week. I asked if he knew anyone who had successfully managed to go from NDT to Levo thyroxine with T3. He said no that ndt patients don't come generally (I know why!) he said if I wanted to try myself on Levo/liothryoxine again he would give me a slightly higher dose of T3 than I tried.

Main reason for giving this a go again is that I still suffer from fatigue albeit not as bad as before but also because when I was first diagnosed and I saw a private specialist (Dr Toft) he seemed to think I also had chronic fatigue at the time.

I am gluten free for a year (massive difference to the fatigue) and I take all the supplements recommended for hashi's as well as good quality probiotics for my digestion which since I went GF has been the best it has ever been.

Just wondering if anyone has gone back the way successfully. I will be monitoring myself closely and have a supply of NDT ready just in case I fall flat on my face.

Thoughts from my nhs endo visit are that there is not much advancing science in this field and it is very disappointing how little the dr's seem to understand or indeed care about symptoms.

Thanks 😀

[Clutter]

Island_hopper,

NDT doesn't suit everyone and some members have switched back to Levothyroxine + T3 with better results. There is 85.5mcg T4 and 20.25mcg T3 in 2.25 grains NDT so don't let your endo get away with prescribing 5mcg or 10mcg T3.

[Island_hopper in reply to Clutter]

Thanks I am getting 20mcg T3 endo said I wasn't in high enough before - I am guessing though as that's what he said but I've not seen the prescription yet. I showed him the NDT amounts so I am hoping he gets it as close to that.

Not sure of whether this will work but giving it a try.

[Hidden in reply to Clutter]

5mcg tablets of liothyronine are unlicensed for use in the UK.

[Clutter in reply to Hidden]

Panda321,

Yes, but 5mcg Perrigo or Pfizer are prescribed.

[Hidden in reply to Clutter]

They may be prescribed but they are still unlicensed. The only item on the 2017 NHS Electronic Drugs Tariff is for 20mcg, brand AMCo at a cost of £258.20 for 28 tablets.

If unlicensed 5mcg tablets of liothyronine of any brand can be routinely prescribed, it seems highly suspicious that NDT is not.

[Limbolass]

I tried Levo/Lio combo after NDT not working enough for me but that didn't work well enough either, I was given 100 & 10 so maybe 10% T3 wasn't enough but when I was on NDT (20% T3) my T4 went too low. As soon as I struggle to breathe properly I know it's not working as it should. So I'm back on Levo/NDT combo but I'm still getting worse. It sucks.

Try it & see, everyone is different, the endo will probably put you on 10% Lio, if that don't work ask for 20%, good luck.

[Island_hopper in reply to Limbolass]

Thanks. My endo said that before I was on 10mcg T3 and 50mcg Levo and that maybe T3 was too low and he was going to prescribe me 20mcg this time. So we shall see what happens. I am quite worried about the transfer back and am waiting until middle of August to start once I have got an important piece of work finished just in case I am floored with it.

Sorry to hear you are not good and I hope you can get help to find a dose that works for you sometimes changing GP can help

[Hidden]

After years of hell on levo, nobody could persuade me to go back to it even if it were accompanied by liothyronine to the same proportions as in NDT. That combo was offered to me a while ago in order to shut me up. Whether it would still be available at those levels to me is most doubtful.

[Limbolass in reply to Hidden]

My endo made a point of telling me how expensive Lio is compared to Levo which made me feel guilty as it's on the NHS.

[Hidden in reply to Limbolass]

It's not you that should feel guilty, you're the one who is ill and liothyronine (T3) added to the levothyroxine (T4) will probably make you feel a lot better.

It's the NHS which is at fault for failing to find an alternative source for the T3 that they order. The supplier in the UK is as guilty as the hot place for charging so damned much for it, the NHS is just plain stupid for being prepared to pay the price. The NHS maintains that there is no good evidence for the use of the product (even though there are, and always will continue to be, genuine uses for T3 other than as an additive to T4), the manufacturer says the cost of producing it has risen by 2000% or whatever. The cost in Greece and other European countries is less than the price of an ice cream.

Just who is right here and who is wrong???????

[KornishPiskie]

Hi Island hopper,

I was wondering how you are doing on your t4/t3 combo?

All the best

Kornish