Private endocrinologist has suggested I try Armour Thyroid

[Zazbag]

Purely from a practical and cost perspective, would this be favourable over levothyroxine and liothyronine? I'm based in the UK and I was under the impression that it's very difficult to get NDT here and I don't know how expensive it is. My plan was to get a private prescription for liothyronine and trial it in combination with levothyroxine and if I notice improvements, to ask my NHS GP to refer me to an NHS endocrinologist (I'm having ongoing symptoms) so I can request an NHS prescription for it. I will be leaving the UK at the end of October for 6 months so I need to make sure that whatever I try is something I can obtain abroad (I'll be in Jordan).

[fuchsia-pink]

My understanding too is that NDT is quite tricky to get, but lio with a private prescription can currently be obtained reasonably easily - eg from Germany (there's more info on this on the Thyroid UK site) ... at least until the transition period is over. You can get 100 x 20 mcg tablets.

It's also possible - but tricky - to get lio on the NHS (and I can tell you more about this if it's of interest)

So from a practical perspective, it's got to be easier - at least at the moment - to go for combination therapy and see how yo do on it before trying to get hold of NDT.

I have no idea about whether you can get hold of either in Jordan!

[Zazbag in reply to fuchsia-pink]

Thanks for your reply fuchsia-pink! That's what I thought... I also heard that the ratio of T4:T3 is variable with NDT which worries me a little since my body is so unpredictable as it is without throwing more sources of confusion into the mix!

I would love to hear more about getting lio on the NHS if you wouldn't mind explaining?

Since NDT is from pigs and Jordan is a Muslim country I imagine the demand for it would be non-existent there.

[fuchsia-pink in reply to Zazbag]

Good point about the pig/Muslim country issue!

it's possible, but tricky to get lio on the NHS.

It has to be prescribed by an endo - and not many will, because it's expensive, they don't understand it, and it has a very short half life so is difficult to measure.

I'd suggest (a) emailing Dionne at Thyroid UK - [e-mail] - for the list of T3-friendly endos to see who is reasonably close to you. You don't have to see the nearest person but must obv be reasonably convenient.

(b) a separate post asking if anyone can recommend anyone near-ish to you, or if they have any experience of an endo you've looked at

(c) if there's no-one really suitable, googling the hospital thumbnail biographies of the endos who are near-ish to you and seeing if any of them mention thyroid or of they're really all diabetes specialists.

You will need to show that you convert badly and still have hypo symptoms despite high in-range free t4 (which these results do) Worth taking someone with you emphasising how you're still not properly well on your current medication.

Good luck x

[Zazbag in reply to fuchsia-pink]

Ah this is wonderfully informative, thank you. My flatmate has seen how tired I've been so I think I could bring her, but to be honest I'm not convinced that my GP would be willing to refer me to an endo. I once asked about it last year and they told me no. I have a new GP but I assume there are rules around when to refer but I don't know what they are. Do you happen to know?

Also, I'm on 150 mcg levothyroxine – would you say these results show that I am not a good converter?

NHS blood test results differ from Medichecks despite both tests being from the same blood sample:

NHS test:

TSH: 0.03

FT4: 19.4 (74% through range)

FT3: 5.2 (56.8% through range)

Medichecks:

TSH: 0.023

FT4: 22.6 (106% through range)

FT3: 5.6 (67.6% through range)

[Hibs1 in reply to Zazbag]

I find that with Medicheck and nhs tests too,that's including monitormyhealth tests always a difference

[fuchsia-pink in reply to Zazbag]

They're not brilliantly balanced. On the medichecks test you show that you have to go over-range on T4 to get up to 2/3 way through range on T3 ...

It took me a while to get to see an endo. I'm quite good at standing my ground. I'd been told I was over-medicated on my then dose of levo (which I felt well on) and had reduced it very slightly. Was then feeling not right and bloods had not changed so I wasn't prepared to drop further as the GP was asking. This is long before I found this forum. I then had first T3 testing - no idea of the results, but the conversation then changed a bit. I had a dexa scan (it seems GPs are obsessed with the idea that low TSH or high free T4 means you are guaranteed to get osteoporosis within moments) and then got my referral to the nearest endo ... and repeated to him that I wasn't prepared to prejudice my health and become less well by reducing levo further, as he was now also insisting - and eventually got a trial of lio. And have felt 100% ever since

But you have much better information on your side. You can say that you are aware of the dangers to your health of not converting well; and that you are aware of other medication that is potentially available; and that, having done your research, this is the endo you would like to see. You need a combination of luck and the GP thinking that their life will be easier if they give you the referral - whether it's because it gets you off their back or because they are actually quite worried about how it might re-bound if you get really quite ill ...

Let us know how you get on x

[Zazbag in reply to fuchsia-pink]

This is really useful to read, thank you for explaining. I've got some concerning renal results so my GP wants to check those first, but once any possible kidney issues have been diagnosed/ruled out I will put my foot down about seeing an endocrinologist. In the meantime I will continue to make GP appts so I can let them know how bad I am feeling so they have a record of how my symptoms are affecting my quality of life, and I have another appt with the private endocrinologist next week so hopefully I can get the help I need in the meantime.

[Zazbag in reply to fuchsia-pink]

I managed to persuade my GP to refer me to an endocrinologist!!

[fuchsia-pink in reply to Zazbag]

[Zazbag in reply to fuchsia-pink]

I really had to put my foot down about it, she tried so hard to deflect the conversation from the endo referral and she made a comment about how rare it is for someone to still have symptoms when on levothyroxine and that she can't make any promises about what the endocrinologist can do, and mentioned that liothyronine is a black drug and rarely prescribed. I'm not sure whether I should be discouraged by any of that, or whether that's just what they get told to tell everyone.

[fuchsia-pink in reply to Zazbag]

She's actually right - I gather 80%+ of patients are happy on levo [or maybe not happy but don't know they're getting rubbish treatment from their GP and better is available] And it's also right to say that lio is tricky to get hold of - as per my earlier message - and it IS a black drug ie endo only. Also some CCGs just won't allow it, because of cost so depending on where you are, you may not get it even now. And you need the "right" endo as so many won't prescribe it ...

This forum necessarily attracts the "other" 20% ... so it can seem as though everyone is on lio or NDT.

It's also important to understand that it isn't a miracle cure. There are those, like me, who tolerate it well and are completely restored by it and have found it a life-saver - but equally others who can't get on with it - and are really gutted by that, having gone to so much effort to get it in the first place. But you won't know how you do on it until you get some and try it - and you've passed the first test and got a referral!

[Zazbag in reply to fuchsia-pink]

Honestly makes me so annoyed knowing that a lot of people are feeling rubbish without understanding why and just accepting it when there are solutions available.

Thanks for reminding me of that, it's not a miracle cure, but I feel I need to try it. What do people do when they don't get on with T3 though? That's quite a scary thought.

[Simplyred57 in reply to Zazbag]

I got my Gp to refer me to the endocrinologist I wanted to see, there was a 3 month wait, so I rang his private secretary and saw him the next week privately ( £250) I saw him and he asked if I could go to his nhs clinic 2 days later for bloods , and now sees me as a nhs patient.

The best £250 I’ve ever spent. Although I managed to get a private prescription he wouldn’t give me T3 on nhs.

[diogenes Remembering in reply to Zazbag]

As regards the ratio of T4 to T3 and the T4/3 levels, Armour NDT is strictly controlled by the US Pharmacopeia as to content. Most NDT sources don't vary much in their ratios and amounts. The usual red herring is that the T4/T3 ratio in NDT is not correct as regards the ratio in the human body. It doesn't matter so long as your T3 level in blood is OK. The amount of T4 doesn't really matter because it will be converted to T3 at need in the body

[Zazbag in reply to diogenes]

Ok thanks, this is good to know!

[Hidden in reply to Zazbag]

The T3:T4 ratio in prescription NDT does not vary. Prescription NDT contains a fixed ratio of T3:T4. It´s the hormone content in glandulars (supplements) that is not standardised so not predictable.

Armour is by far the most expensive brand of NDT. There are two cheaper versions of Thai NDT - Thyroid- S and Tru Thyroid. Both contain porcine thyroid and are prescription-strength. Unfortunately, they seem out of stock everywhere right now due to the pandemic, but many people are happy with Thyroid-S which has been around for years (Tru Thyroid is quite new so not as many people have tried it yet). They don´t require a prescription.

[Zazbag in reply to Hidden]

Ah ok that's useful, thank you.

Do you know standard costs for getting Armour vs these other brands you've mentioned? I found Armour on Pharmacy2U for about £2.50 which seems very cheap to me. How come you don't need a prescription? I didn't realise you could get NDT without one...

[Hidden in reply to Zazbag]

The Thai brands are sold as supplements which is why no prescription is required. You need a prescription to get Armour in a UK pharmacy.

I don´t know if you can get Armour on the NHS in the UK, but in countries where you have to pay the whole cost yourself it´s very expensive (also in the US as far as I know). It all depends on if your health insurance will cover it or not.

[Hidden in reply to Zazbag]

I just looked up the website you mentioned (since they require a prescription I think it would be ok to mention them here), and they charge £175 for 100 15 mg pills.

[Razzydaz in reply to Zazbag]

I recently ordered 100 Armour tablets at 60 mg (1 grain) without prescription from the US. They cost just over £150, including all Vat charges . I wanted to try them before paying privately which would be £90 for consultation plus £40 for prescription then £125 for tablets. If they worked I would see the private consultant as it would work out cheaper in the long run.