Levothyroxine alternatives - experiences?

Hi Pinkbluepurple, do you mean Natural Dessicated Thyroid Extract rather than the synthetic form? Or do mean alternatives synthetics to Levothyroxine?

I'm still on Levo so have no experience of this sorry but I've read about NDT. I think it can be hard to get prescribed on NHS but privately you may have more luck. I've also read alot of smaller pharmacies don't stock it, so I guess it depends where you are? I was considering this when I did so badly on Levo mono therapy for so long but since I've started T3 aswell I'm doing better. NDT is usually from pigs thyroids and therefore contains both T3 & T4 which is why I was looking into it. Interestingly, historically before synthetic alternatives were created, this was what was used! Sorry not much help, hopefully someone will reply with experience of alternatives.

With regards to the anxiety, I've recently started an antidepressant for pain relief but I'm actually finding it's calming my anxiety too. Have you considered talking to your GP about taking something like that for a while just to help your anxiety whilst your trying to stabilise your thyroid meds? X

I think I meant more the alternatives for levothyroxine. I’ve only recently been hearing people speak about them online so was curious as I didn’t even know there were other options than levothyroxine? I’ve never heard of that before thank you for sharing! I’m based in London.. not sure if the online posts/videos I was seeing were based in the US too so maybe that’s why their medication is different?

I’m struggling with really bad fatigue, muscles aches and pains so just wasn’t sure why. When I speak to my GP about it they said my blood tests come back within a range they’re happy with. I still to this day find it all confusing and recently learned that taking the same brand of levothyroxine is important too as that can affect blood test results too, which I wish they told me before as there was a period of time I was being prescribed a different one for 100, 50 and 25mg levothyroxine. 

I was on antidepressants for anxiety before I was diagnosed and the year during and then I came off them to see how my thyroid medication was working in terms of mood etc. I’ve become used to high anxiety being a bit of a norm unfortunately, I was also given beta blockers when my palpitations were really bad during the first year post thyroidectomy. I’ll have a think about whether to go back on or not. 

thanks for your reply! Hope you’re having a good week xx

Hi again Pinkbluepurple, just a quick add. It’s very rare you’ll find a GP who knows enough in depth about the complexities of how the thyroid meds work when you don’t have a thyroid. It’s different to treating people with thyroids. Our “numbers” will be different in a lot of cases. We are individuals and we should be treated as such and we all react differently to these meds. A minority of us just don’t do well on the standard synthetic monotherapy and it’s only fair that more avenues should be explored for us to help us feel the best we can under the circumstances. It should be based on how “well” you feel and when your symptoms improve (as long as numbers aren’t too excessively out of range of course). I feel you’d benefit so much if you could insist you get a referral to a good Endocrinologist (who will listen to you). My fatigue was crippling before I got taken on by this current Endo and she prescribed my combination therapy. Only the consultants can prescribe this, the GPs can’t. I’m with Birmingham QE hospital, so can’t help you with London recommendations unfortunately. I got referred straight from my surgeon/ENT consultant, maybe you could get back in touch with yours or your CNS and ask for a referral from them as you are doing so poorly on the Levo?

I wish you the best, it’s really not easy getting an understanding GP who will refer onto the Endocrinology specialists and it’s just awful having to live with these symptoms. X

P.S. my numbers were in range too but I was still getting the dreadful fatigue and all the other hypo symptoms. I was lucky the Endo listened and still prescribed the T3. It is making a real difference. It seems my body must not be what's called a "good converter" of T4 to T3 and adding the T3 now helps me. I realise this is all a lot to take in, I did so much research to try and understand it all. Hope it's of some help anyway. Take care. X