Stand your ground folks on the T3 Saga!

This will make you laugh, it did me.......Last July I was told in no certain terms that I would be "weaned" of the controversial Lithyronine T3 medication as it "does not work" and is expensive in the UK. The idea was that my dose would be reduced to 10 mcg instead of 20 mcg per day. I said a big fat no, I will not stop taking it, even if I have to buy it.

Well, my prescription was never changed and I continued to take it on the "normal" dose. To cut a long story short, I have just had my medication review and was asked "Do you still take the 10 mcg of Lithyronine as prescribed daily"? No, I said I continue to take 20 mcg as originally prescribed and will continue to do so. If you look at my results, you will see, I am on the right dose for the range I am in and I feel good on it, with no side effects".

I was thinking, I was going to get a lot of flack and rubbish about the expense, blah blah blah but I didn't. All I got was "Ok, I will change your notes and prescription to reflect that!" So as far as anyone is concerned at my surgery for the foreseeable future, I am will remain on the same dose as before. It will be interesting to see what the next prescription says about taking it and how much! ;)

Hang in there folks, there is hope for us all. (fingers crossed she says)

:)

11 Replies

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  • Hi JollyDolly, I've just sent something to our web guys to put onto our home page about this topic. As soon as it's up, I'll put a post on HU with links to it.

  • Thanks Lynmynott, I will look forward to reading it. :)

  • Excellent :) Why should we be be bullied into an alternative when we are obviously well on the amount of T3 we are taking. :)

  • Shaws, I would not have got an alternative it would have just been the thyroxine only. I was compared with other patients "being ok on T4 only, so why shouldn't I conversation" My reply at the time was not polite ;)

    The daft thing is, I am on what I call my natural dose of thyroxine now anyway. If they had not messed me around originally, I may not have needed the T3, but I do now plus the thyroxine which is 200 mcg.

    It just made me smile, after six months of bitterness and me being angry with the silly professionals, hopefully nothing will change after all.

    :)

  • If patients have the autoimmune condition and are not improving and even feeling worse, they have to look 'out of the box' and so should doctors when patient is still full of complaints (which are actual clinical symptoms of which the professionals know none). They should take note when a patient improves and when another patient comes along with problems they should be given a trial of options/additions to T4.

  • Well done. We shouldn't be bullied by those who think they know better than us, the patients, when we've already tried this and that and not improved but have done so on whatever we felt better on, i.e. T4/T3, T3 only or NDT.

  • Well done! I wish I dare approach my GP about T3 but I'm sure I would just be passed back to the Endo who said I had no endocrine disease (look at the blood test I've just posted)!

    I wonder, if anyone is worried about having their prescription changed, could you say something like "If you (Dr) change my dose against my wishes and I suffer any ill health reactions, heart attack, stroke etc etc, are you (Dr) happy to be responsible for that?"

    It might change some minds, maybe?

  • Woo hoo! Way to go JOLLYDOLLY . Well done :)

  • JOLLYDOLLY your story is giving me hope! I have spent the last 5 days in a panic that my GP will reduce or stop my Liothyronine dose of 20mcg daily after my visit to the endocrinologist on Weds to explore other possible autoimmune diseases contributing to my fatigue and thirst considering my labs look great on what I am on. This doc ran some tests, but he was clear he felt I was over treated, didn't believe in T3, and would advise reducing my T4 and T3 medication in half!!! My GP reassured me that we would listen to me as a patient and can't force me to be ill, but I am worried the Endo will trump her power. I started T4 12 months ago after 5yrs on NDT and within 3 months my T3 had plummeted and symptoms. Since starting the T3 I have felt fine on the T4 and T3 despite fatigue and thirst on workdays. Any tips on advocating for myself to NOT be taken off my T3 prescription. I know I can get the T3 elsewhere, but I'd rather stick to having it prescribed and monitored with my GP.

    Thanks in advance! I feel like I'm going crazy out of fear of what this horrible doctor's report will say :(

  • Hi CCheale,

    Yes the prospect of going to see the Endo, didn't thrill me either. However, the reason I went, was because my GP phoned me to say that the practice was no longer licensed to prescribe the T3 Lithyronine because it was deemed unsafe (ha ha) I argued that I knew it was the price that was the real reason and that it was a Endo that had originally prescribed it. So the answer I then received was that a Endo would need to authorise it being prescribed in future.

    How much T4 are you on, as when I was over prescribed, I had a terrible thirst. My current dose which is what I call my natural dose (born with the condition) is 200 mcg of thyroxine and 20 mcg of lithyronine. But I was on 250 mcg of thyroxine, used to get really thirsty and sore, dry eyes. Sensitive to light as well.

    I was dreading the appointment because I knew what the outcome would be. It was a heated appointment and I basically walked out and then reported her. I have to say, in my opinion she was one of those that didn't care and I had never experienced that before. "In her opinion, it was a drug that was dangerous, did not work and the money could be spent on more worthy causes" - So to me that was a red rag to bull lol and I went for her big style (not my finest moment).

    However, because she insisted on bloods test to be done, she actually shot herself in the foot as it were, because when the results came back and subsequent ones since, it has become openly obvious that the T3 does work and works well with the T4 for me.

    If I were you, go equipped with any results you already have, ranges included. Make her/him aware of how you feel. If they try and categorise you, which they might, explain that you are you and not interested in other people's results. The one thing that might come up is this ridiculous research of how dangerous the T3 drug is. But it isn't. I would also ask, about having a full blood count of TSH, Free T4 and T3, ferritin/folate levels for B12 deficiency, anaemia, vitamin deficiency, cholesterol, as sometimes the symptoms are similar and go hand in hand with thyroid symptoms and conditions.

    One thing for sure, T3 does not cause heart attacks or problems as suggested. It would only cause problems, like with any drug, if taken in a massive dose on a regular basis.

    The other thing you could say, if the Endo gets all high and mighty is ask them if they have a thyroid condition, so when they say no - "well how can you sit there and tell me I feel alright, when obviously I am not" - gets them every time. Seek a second opinion if you need to.

    Hope it goes well, let us know how you get on. At the end of the day, you know how you feel and yes they may be qualified, but it doesn't make their opinions right.

    Take care :)

  • JOLLYDOLLY your experience sounds exactly like mine with the Endo!!! My GP practice has not expressed any concerns about prescribing it. She was referring me for extra tests to rule out any other autoimmune disorders because we are going to start trying for a baby in a few months. She (GP) found it a bit confusing as my TSH was suppressed indicating over treatment, but my T4 and T3 were in range and looked great. She said we would ask the Endo about this in addition to the other tests.

    Unfortunately the Endo did not have access to any of my labs and I forgot to bring them (although it wouldn't have mattered with this jerk). I told him I was misdiagnosed for years and that it was y T3 that flagged I was hypo, he was then convinced I was never hypo in the first place. He took my symptoms out of context (heart palpitations and jitters WHEN I HAVE CAFFEINE OR SUGAR... anxiety over what is going on with me... sadness over being tired) and made that evidence for being over treated. I kept saying how I had all these symptoms and felt horrible before and he continuously came back with "well you're on meds now and still having symptoms." To which I replied, yes I still am tired but its a life I can manage to live. He saw tears and started talking about how if tests come back normal, he would be likely to recommend to half my Levo and Lio and look at antidepressants as the method of treatment. He also tried to speak to me about the negative side effects of thyroid medication and said to me "there is no strong evidence to suggest that T3 is beneficial in thyroid treatment." He wasn't even going to test my FT3 and when I asked about taking my medication before the test he dismissed it with T4 stays in your blood... ya but my T3?

    I left in hysterical tears as I have never felt so dismissed in my life. I called the practice back and insisted my follow up be with a female, who after doing some research, I heard does acknowledge T3. I also feel that I have evidence to show I struggle with T3 as the two blood tests I had last year when I was not on T3 replacement showed low and even lower T3 (so it shows it declines over time without treatment) with hypo symptoms coming back (way more than just fatigue and thirst). And then when I did start my numbers went right up to the mid/upper range and symptoms gone and I felt great on this until recently, which I think now might be my iron?

    I have had my folate and B12 tested and that was normal. I don't see Ferritin on any of my labs though. He is testing my Vitamin D.

    I am on 100mcg Levo and 20 mcg of liothyrnonine spread across 3 doses (10mcg in the morning, 5mcg at 11:30 and another 5mcg at 3:30). They started me on 125mcg Levo and I dropped myself to 100mcg as I felt more hypo and knew it was overmedication (I have been overmedicated in the past). I do think my Levo might still be too high but when I dropped down to 75mcg my T4 dropped to 12 whereas on the 100 it is 15/16 (range 12-21).

    Considering I have labs showing my T3 drops and likewise I do respond positively to T3 treatment, an endo was the one who first advised I start T3, and my GP has not said they can't prescribe it... do you think I should be alright? I feel worst case I make them go back to the specific Endo who prescribed it at the start?

    Oh and when I kept saying to this man how I felt alive again after starting thyroid meds, this jerk did say "I mean I don't have a thyroid condition but if I took hormone medication I would feel great too." Ya well you don't so shut up! I swear he thought I was using it as a happy pill and to lose weight!!! I think I might report him. Just hoping this new female doc is alright and the fact I saw an Endo within her practice doesn't work against me either. So many worries :(

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