NDT in the UK? Where to start

[weescone]

Hi folks, I'm quite new on here. I've been on chemical T4 Levo for 13 years, fully symptomatic. 2 months ago I asked the Endo for some T3 in addition. He gave me Liothyronine in a small amount. I think I feel worse, have put on more weight, and in the last few days now have strange sensations in my throat area. I'm considering buying NDT if I can get it. Not sure where to start, or where to buy from in the UK? Any advice will be greatly appreciated! 👍🏻 (a year ago they also diagnosed Hashimotos

[Jazzw]

Hi Weescone

First things first, you may not need NDT. You may not even have needed the T3. Don't get me wrong, you probably do/did - but it's best to start with the basics.

Have you any recent blood test results to share? Do you have recent results for TSH, FT4 and FT3?

How much levothyroxine are you on at the moment, and how much liothyronine?

Often, it isn't that you need different drugs, just that you need more of what you're already on! Doctors these days are wedded to lab ranges, not whether results from the lab show your thyroid levels to be in the optimal part of the range. There's a world of difference between a TSH of 4.5 and a TSH of 0.5. And if you're taking any amount of T3, the TSH will nearly always be suppressed whether you're on enough liothyronine/levothyroxine or not - so FT3 and FT4 must be done to have any idea of what's going on.

Finally, if your thyroid results do look ok (and never accept a doctor's word for that - post them here for comment), it might be nothing to do with your thyroid as to why you still feel unwell - could be low iron/ferritin, low B12 or low Vit D (or all 3!).

[weescone in reply to Jazzw]

Hi Jazz, thanks for the reply. I am now on 75mcg of Levo, and 10mcg of Liothyronine. I don't get labs for this done for a couple of weeks. I'm going to ask regular GP today when she phones what my last labs were, when I was on 150mcg of Levo only. I'm also going to as if I can get more things tested :

TSH

Free T4, FreeT3, Reverse T3, TPO, TgAB & TSI antibodies. As well as adrenal saliva testing, although I have a feeling I'll just be told that'll not happen...

I may also consider seeing a naturopath.

It's a complicated business & im still learning. But at least I'm not wishing to leave myself at the mercy of these GP's who lack understanding. 👍🏻😊

[humanbean in reply to weescone]

Do I understand from what you've just written that your levo was reduced by half - from 150mcg to 75mcg - when you were prescribed 10mcg of T3?

No wonder you feel absolutely awful. 10mcg T3 is roughly equivalent to 30mcg - 40mcg levo. So your total dose has been drastically reduced. It is quite common for endos and doctors to do this - they set the patient up to fail just so they can say "Look, I told you T3 wouldn't help you, and you should have stuck to levo."

If your doctors are doing this to you, you would definitely do better to either find new doctors or to take your treatment into your own hands.

[LindaC in reply to humanbean]

Personally [even impersonally... ], I couldn't tolerate T4 but I get what you're saying about 'setting up to fail'. Instead of showing understanding [a little compassion wouldn't go adrift either], 'they' care more about 'being right', for which there is none!

[Jazzw in reply to humanbean]

Couldn't agree more. It seems to be a game being played to create a good excuse for not being given T3. It allows the doctor to say, "Hey, we tried that, it didn't work - therefore it must be something other than your thyroid. Here, take these antidepressants..."

What a pity you weren't left on 150mcg of Levo and given 5mcg of T3 on top. But that would probably have worked, so I can see why your doctor didn't do that. Heaven forbid that the practice should fork out for a more effective but unfortunately more expensive drug when they can pretend it didn't work.

Sorry, getting increasingly cynical in my old age.

[Hidden in reply to Jazzw]

Definitely not cynical...REALISTIC is what you are x

[Hidden]

I'm amazed you were even given t3. If you can afford private you will get ndt, if not you have to buy online without script.

[weescone]

Apologies folks, I'm back! It's been a hellish few days. Hair falling out, painful neck, exhausted!! Got labs back only yesterday : FreeT4: 7.9 and wait for it.......... TSH: 38.3 !!!!!!!!

No wonder I'm falling apart. GP is now worried for me. He said put T4 up to 100 (from 75), but I don't think that's enough, so I'm now taking 125 of Levo at night. And I've made my own decision to take 10 mcg Liothyronine twice a day... Bloods again in 4 weeks! so tiring emotionally & physically all this.. 😕 xx