Good morning all, been to see the specialist and now have to go for an ultrasound on my thyroid and they're going to take nodule samples.

On the plus side I'm staying on Liothyronine until at least Christmas. She told me that in the south of England it's getting almost impossible to get hold of it, but here in Blackpool not too bad at the moment. They are though having a little chat about it soon and then they'll inform the patients what will happen.

There is apparently some serious side effects of Liothyronine which is why they're trying to phase it out and as there's no actual proof either one way, or the other that it helps people it's probably very likely it will go! Although apparently people like me who are only one in every thousand that have an enzyme deficiency will be kept on it and monitored.

She said it's basically a poison and whilst I'm on it my TSH levels, or is it THS, will be unreadable. It causes irregular heart beat and blood clots. Causes strokes and heart attacks. But can be controlled by beta blockers and blood thinners.

Question being, is this just a ruse, or is it an actual fact? I'm erring on the side of ruse due to cost. Although I'd not be surprised if it was true. All I can say is that the 7 days I was not on Liothyronine were an absolute nightmare.

My other question is what should I prepare myself for with the ultrasound and nodule samples. She's ordered these and since I missed the seven days of Liothyronine my thyroid is now a little pronounced and my voice has changed slightly, plus I have a stiff neck on my left side.

I'm not going to google as by the time I've finished that I'll probably need my head cut off!! πŸ˜‚

Thank you all I know at least one of you will know.

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  • The thyroid produces T3 - so I do not think our bodies would naturally produce a poison - one that is needed in every cell of your body. The GP is talking rubbish.

    It is LOW in range T3 that causes problems ....

  • Yes I thought that. I spoke to my husband after the consultation about it and he thought the same as me. That the Specialist has been coached in a response to make the NHS look like they're doing what's right!

    I let her know that without the liothyronine I couldn't function. This meant as being self employed my business wouldn't exist. I can cope with extra Staffing for a short period, but as I'm the main income it would end with, no business, and no jobs, plus my husband having to become a career. Which would then mean no income, no house and living off the state. How is that saving money?

    That's when she told me that I and the other 1 in a 1000, would be kept on Liothyronine unless it is totally banned.

    Don't know about you, but I'd say it's propaganda! How dare they try to balance what they're doing against scare tactics and lies? 😑

  • Why not stock up whilst you can from on-line sites - in case they stop your prescription.

    My FT3 was low in range after a few years of T3 only as I was not converting T4 into T3. After years of working on B12 - Folate and VitD levels I have re-introduced T4 myself and after 3 months the FT3 was optimal 😊😊 Hurray I am now converting !!

  • Well done you. That's brilliant!! I'm trying that st the moment, but not making much of an impression so far.

    I've got Liothyronine tablets now for up to Christmas and I've taken a photo of the different producers around the world just in case.

    My chemist said if I'm taken off to get a private prescription off my doctor and he'll get them in for me at cost. Just needs the list. So I'll be covered πŸ‘πŸ»

    I was going to mention to the Specialist yesterday about autopsies done on heart attack patients being very low on T3, but I thought I'll save that one in my belt for the next time.

    Is nobody doing research on this at Withenshaw hospital in Manchester?

  • Check out the book on Amazon - Thyroid and Heart Failure. It is a book full of research papers from around the world. T3 - Liothyronine is the star of the show ! You can look inside and read the contents which are revealing.

    People dying in hospital also havve LOW cholesterol - another scandal 😊

  • I'll order that now. Thank you Marz.

    Just the waste they do is unreal. So much pain and suffering just because they think they can.

    My doctor is good, but he's probably one in a million. Also my Chemist. I am so lucky in that respect.

    I don't doubt my thyroid has more to shock me with yet, but at least I've a good Doctor and Chemist behind me I can rely on. All I need now is a Specialist that isn't a government puppet. πŸ˜‚

  • The book is horrendously expensive - wish I could lend you mine but I am in Crete ! Most of the research papers in the book are on Pub Med. Are you familiar with that website ?

  • No but I'll google during my lunch break and see what I can find. It's all ammunition in the end isn't it.

    The Specialist said there's no proof that Liothyronine helps. I've got an email for a contact at Withenshaw hospital where they experiment. Was thinking about volunteering.

  • When you are searching for say - Low T3 and hearts PubMed - the research papers will appear. It is the website that holds ALL research - both good and bad 😊😊

  • Thank you 😊

  • Hi Janet's

    Your scaring me now.

    My sister was thinking of trying it out to see if it would make a difference. But I trust these good people over Doctors as I was under medicated for years .

  • I read that SeasideSusie suggested in an earlier thread that your sister did something to improve her B12 & Folate. Her thyroid results were fine and conversion from T4 into T3 needs good levels of both. Adding T3 at this stage will not help ......

  • Thanks Mars.

    It was another sister that has it.

    Keep it in the family! That's us!

    Must run in families.You just cling to anything,in the hope something anything will help.

  • Through this forum I have learnt a lot. Clutter and team recommended go up to 75, then 100mcg.Have been so helpful. I have increased thyroxine to 100mcg from 50 ,75 and now trying gluten free.I feel my low mood has , more get up and

    go.Dont know if it is the increase or gluten free or both. But I will accept. Roll on the next test.

  • Don't worry propaganda is meant to scare. I think everyone on here is far more in the know than the Specialists would like.

  • Thanks Janneta

  • Janneta,

    NHS England accept that Liothyronine is clinically effective but want to withdraw it from NHS prescribing due to the cost, not for any other reason.

    Your GP has bought into the ignorant anti-Liothyronine hype hook, line and sinker. It is utter nonsense to say that Liothyronine is poison. TSH is suppressed because of the amount of Liothyronine taken. If GP doesn't want TSH suppressed a lower dose of Liothyronine should be prescribed. Excessive Liothyronine doses may cause atrial fibrillation and blood clots but so will excessive Levothyroxine doses.

    Here are two observational studies demonstrating Liothyronine is safe.



    You don't need to prepare for an ultrasound or fine needle aspiration biopsy. Just wear something allowing easy access to your throat. It's not a painful procedure as you will be given local anaesthetic to numb the skin where the needle enters to remove some thyroid cells. You will need to lie back with your throat thrust upwards which is a little uncomfortable. After the procedure I was advised to press a wad of gauze against the throat to reduce swelling and bruising. There was some discomfort and bruising for a few days but nothing that paracetamol couldn't deal with.

  • Thank you Clutter that's reassuring. Not totally trusting of the white coat population :-).

    That was the Specialist telling me that. Think like I said in another comment it was just a bit of scare propaganda to try to get me to think that I'm better without it. I told her in no uncertain terms I was not and had recent experience of being without it. She tried to put that down to the sudden withdrawal. Which I told her shouldn't have happened like that anyway. If I was a drug addict they'd have eased me off it. Not just withdrawn it.

    Didn't want to be too arsey about it, but did let her know I wasn't an idiot.

    Even drew me a drawing of the heart so I could understand! Told her I could draw that myself with veins, arteries etc and colour it in if she wanted. I studied Veterinary many years ago. Totally different of course to Thyroid, but didn't appreciate being spoken to like a two year old. Sometimes though it's better to grin and bare it, sometimes not.

    It's all just so frustrating isn't it.

  • Janneta,

    One doesn't get withdrawal from stopping T3 and it is accepted medical practice to switch patients from Levothyroxine to T3 for RAI, and then to stop T3 altogether 2 weeks prior to RAI, and then resume Levothyroxine post RAI. There's no need for titration up or down.

    I won't accept being told by anyone that Liothyronine is not effective or is a placebo. I was initially prescribed Liothyronine only for 3 months and was recovering nicely. If it isn't effective why would NHS waste money on 2 thyroid operations only to put me on an ineffective drug? Felt poisoned when I was switched to Levothyroxine and became progressively sicker for 15 months. Have been taking Levothyroxine + Liothyronine for 3.5 years and am well. I know whereof I speak and a white coat is not going to persuade me otherwise.

  • I'm definitely with you on that. I did wonder if it was doing me any good. I certainly felt much better and had finally started loosing weight and being able to get out with our dogs too.

    Had no idea of how much better I felt and looked in it until I lost it for seven days!

    I wouldn't have let her take me off them without a fight. But she certainly put a good story forward. In future I will be treating Specialists like second hand car salesmen. Totally untrustworthy on the liothyronine front. I did tell her that the risks she put forward were worth staying on it in comparison to the pain caused off it. That pain is what she was trying to palm off as withdrawal. Did make me wonder.

    But then I thought that if it was withdrawal why am I still in some pain six weeks after having it back. I've assumed that I'm still building my T3 levels back up after having been drained to zero. Not because of withdrawal pains.

    Am I right, or am I right?

  • Janneta,

    You don't get withdrawal from stopping T3 because you have T3 in your system and it will take time for levels to drop after your last dose. The pain could have been caused by low FT3 after a week but pain should have resolved as your FT3 levels increased when you resumed taking T3. It shouldn't take 6 weeks to rebuild levels after only stopping T3 for one week. Has FT3 been checked now you've been back on T3 for 6 weeks?

  • No but I'll get them to do that. Thank you again. So glad I'm on here!

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