Liothyronine request refused

I went to the hospital last week to talk over liothyronine options and was told that the blood tests I've been having for the last year cannot be used as T3, TSH and T4 have not been tested for although this was the initial request! I was very upset as you can imagine. The Dr was very apologetic and sent me for blood test at the hospital straight away. The results are through today and apparently my thyroid function test is completely normal but my Vitamin D is low (had this in the winter a few years back). Dr has said that the NHS cannnot prescribe liothyronine but he can issue a prescription but I would have to self fund to the tune of £100.00a month and is unsure where I would actually be able to get it anyway. If I could afford to self fund liothyroniine then I would have to reduce my thyroxine from 125 to 75mg. I feel kind of duped as by the sounds of it liothyronine was never going to be an option on the NHS anyway. Do you have any experience with this at all? I have also just found out that a friend of mine who lives close by gets Liothyroniine on NHS prescription

33 Replies

oldestnewest
  • Never accept the words "thyroid function is normal". Especially not in your case. If your thyroid function was normal, you wouldn't need to be taking levothyroxine! Your blood test results show some numbers to be within a defined range that someone somewhere deemed "normal" but that doesn't mean they're normal for you and it certainly doesn't mean optimal!

    Do you know what the blood test results were? It would be worth getting hold of the actual results if you don't.

  • I was so upset I forgot to ask for the actual results. But the Endo / Dr is calling back tomorrow to discuss options and I will talk to him then as I have just found that my GP surgery does prescribe Liothyronine - so, as you say I think they are trying to pull a fast one due to costs

  • Make sure you get the ranges, because the numbers are useless without them. What counts is not each number being in-range, but the ratio of T4 to T3. If you cannot convert your T4 to T3, then you are in no way 'normal'.

    That endo obviously doesn't know that you can get T3 on-line at a fraction of the cost! And, as he more or less promised - by implication, anyway - to monitor you if you bought your own, sounds like a good deal, to me.

    But I think he's exaggerating about how much you need to reduce your T4. Especially in the beginning. You risk finding yourself under-medicated - if you aren't already! Could be that under-medication is the root of your problems...

  • I'll have another chat tomorrow with him to get my numbers.

  • Hi Liz, gg is right (usually is), buy your own T3 on-line. If many people have not PM's you by now, I will. Some things are hard to get, usually because you can't get a prescription, but not T3. a) you don't need a prescription and b) it's cheap and easy to get.

    Oh, then check back in here for how to dose. It's basically "start low and increase slow" 'till you feel well.

  • I take Liothyronine only on repeat prescription totally free of charge! I think your doc is pulling a fast one! Take advice from thyroid UK or the British Thyroid Foundation. I live in North Yorkshire xx. Look after yourself.

  • I was so upset I forgot to ask for the actual results. But the Endo / Dr is calling back tomorrow to discuss options and I will talk to him then as I have just found that my GP surgery does prescribe Liothyronine - so, as you say I think they are trying to pull a fast one due to costs

  • I was so upset I forgot to ask for the actual results. But the Endo / Dr is calling back tomorrow to discuss options and I will talk to him then as I have just found that my GP surgery does prescribe Liothyronine - so, as you say I think they are trying to pull a fast one due to costs

  • I get it on nhs prescription but I am always waiting for the axe to fall. Lots of people here are having it taken away. It's so much cheaper to self-treat anyway, it seems silly to take the private script.

  • Yes you just need them to monitor really and labs should do T3 if the request says you are taking it.

  • Tried NDT Natural Dessicated Thyroid? Much more affordable option

  • No I haven't - but may well be an option. Do you use NDT?

  • Yes, have done for 15 months. And a very good Integrative Dr 18 years ago prescribed Armour which was then costing me £40pm. I felt much better on it but then couldn't get it any more. So been on Levo till last Oct when I didn't want synthetics in my body any more. Wise Dr, he also prescribed natural progesterone cream back then. I just read Dr Ray Peat's article and it just goes to show how much more educated Integrative/Functional Drs are. Years ahead of "normal" medicine. Thank goodness there is now more and more interest in alternatives, such as "The Evolution of Medicine". Here is Ray Peat's link:

    thyroid-info.com/articles/r...

  • Anncr, she will need a prescription. If the doc is skittish about T3 there is no way he will write a 'script for NDT. T3 only is a cheaper way to go. I consider my NDT (1.25grains) at $100 per 3 months quite expensive. My T3 was about $40 for a gigantic bag full that I never counted and haven't finished yet.

  • There's NDT available for £40 for 1000 tablets that many on this forum use and have kept them feeling good and levels good when tested.

  • Yes, of course, sorry. I tend to equate NDT with Armour forgetting there are the others, Thyro Gold, Throid, ..................what are the others?

  • I know there's Thiroyd (it is spelt like that) and Thyroid-S. Easy to find out about on Thyroid UK website

  • Would you care to post a link?

  • stopthethyroidmadness.com/a...

    I got there via thyroid uk.

  • So not on the Thyroid UK site?

  • Seems unlikely there would be info about Thai desiccated thyroid meds on Thyroid UK website. Thyroid UK would only have info about thyroid meds available in the UK with prescription :)

  • LAHs, Armour has always been by far the most expensive desiccated thyroid product - in the UK anyway.

    Nature-Throid and Erfa have been better value for money until recently. The price of all desiccated thyroid products seems to have rocketed in the last couple of months.

  • RA,

    Low £ against the $ has pushed up prices of NDT and supplements.

  • Clutter, that would of course account for some of the increase, but not the hikes I've seen. I suspect suppliers are taking advantage of the situation to fill their pockets even more. We are a captive audience :(

  • Yes, that $100 (I rounded) I quoted above was $30 this time last year. When I went for a refill this last February they told me it was $95 and I said that they must have it wrong. They had not, it had jumped from ~$30 to $95! I even went to the money office in the hospital to check that the pharmacy actually had the right numbers, they had.

  • Appalling isn' it. Nothing to justify such ridiculous price hikes.

  • Yes, since Oct 2015. NDT has natural T4 plus T3, T2 , T1 and calcitonin so is a much better match to what our thyroid glands would produce. Levo is synthetic T4 only and depends on how well you happen to convert T4 to T3.

  • Does any calcitonin from the pig actually get into the human body, and if it does, what effect does it have? (Pig calcitonin is not identical to human calcitonin, so far as I have been able to check.)

  • I don't know. No one ever discusses calcitonin, but the healthy body produces it, so it must be for a reason. There's no chance of getting any calcitonin on Levo, as far as I know. And after years and years of T4 only..?

  • And there are many people who seem to have lived quite well on levothyroxine.

    There is little or no point even mentioning calcitonin in desiccated thyroid unless we know it has some effect. Obviously, we can raise questions about that and discuss them. But it could very well be outright misleading to proclaim the calcitonin if it has no effect.

    If the principle effect of desiccated thyroid rather than plain levothryoxine were to be entirely due to the T3 content, say, then that is a different picture.

  • Thanks. My point is, the body does produce T2, T1 and calcitonin for a reason and NDT includes all these where Levo does not. And there are many people who don't do well on Levo only, as these forums show.

  • My point is it is all very well proclaiming that some very sensitive assay can detect T2, T1 and calcitonin in the thyroid of a pig. It is altogether different to claim that the T2, T1 and calcitonin have any impact on human health when delivered by desiccated thyroid tablet. And specifically only a positive impact - which is the only way I can read your responses.

    First, as I have already asked, how much of each is present?

    Second, can these substances actually get into the bloodstream? And if they get that far, can they actually get into cells?

    Third, how does porcine calcitonin, even if delivered, affect a human? Do bear in mind that another calcitonin product was fairly recently withdrawn due to causing cancer. So we need to know BOTH positive and negative effects.

    I am very happy to see discussion about these issues. Discussion does not mean posting responses which appear to ADVISE individuals as to why they should take something on questionable grounds.

    In case it isn't obvious, I am an absolute supporter of the choice to take desiccated thyroid. Using questionable grounds to justify it is a very dangerous path for those who wish it to remain available.

  • If you follow the links below you will find over 29,000 papers which discuss calcitonin, at least to some extent:

    ncbi.nlm.nih.gov/pubmed/?te...

You may also like...