Are there nhs guidelines for decreasing thyroxine?

Hi, I am making a complaint against my gp for slashing my meds from 150mcg t4 and 20 mcgs t3 to just 100mcgs t4. She has blamed the endo she talked to on the phone who sanctioned this. So I am wanting to extend my complaint to him and wondered if anyone can point me in the direction of any nhs guidelines for increasing and decreasing thyroxine so I can quote them at the health board? I am in Wales. Thank you for your help

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  • Hi It does sound drastic. What is your TSH, T4 and FT3?When I was overdosed by a doctor , from the T3, my symptoms were identical to hyper although I am hypo. MY Endo says this can be the case.

    Jackie

  • On what test results is your GP and Endo basing this decision

    did you take your thyroid meds in the 24 hours before the tests

    what symptoms did you have

    and what symptoms are you now suffering

  • Hi, I am also in Wales. Just wondered who your Endo is? Best to PM me with that due to posting guidelines. I also had an Endo who tried to lower thyroxine from 100 to 75 and to increase T3 from 10 to 20. The increase in T3 was at my request and he would say its dangerous ect. I didn't get on too well with him so have another referral to a different one (know nothing about the one I have been referred to and looked them up on line - nothing). If this one does not work out, I have a 3rd one in mind who does T4/T3 combo.

  • It's perfectly normal to decrease T4 when increasing T3. And 25 mcg is the normal amount by which to increase or decrease.

    If he prescribed you T3, the odds are that you weren't converting the T4, therefore, it doesn't matter much by how much he reduces the T4 because it isn't doing anything. T4 is only a storage hormone.

    He is, of course, wrong in saying that it's dangerous. I am on 75 mcg T3 with no T3, and that's the best dose I've ever been on! No danger.

    Hugs, Grey

  • I'm not sure who you are replying to Grey Goose - my GP cut both my T4 and took all my T3 away overnight, leaving me very very ill as I already have housebound inducing 'm.e'. So if we say T3 is 4 x as potent as T4 he in effect cut my meds by nearly 60% over night!

  • I think Grey Goose intended on replying to us both, as I also mentioned T3 and that my endo (well now previous one) cut my T4 and I was not happy with it, so now have 2nd referral and am awaiting appointment. He also said T3 is dangerous, however, some people on this site are doing really well on T3 only. If its working for people, why not have it. I have learned since that yeah, they will cut T4 when T3 is added, so Grey Goose is right there. But in your case 60% of your meds cut , wow, is an awful lot. I can relate to the 'ME' as I have chronic fatigue - same thing. While, I am struggling to get by on say 40-50% on the ME/chronic fatigue scale, you're housebound so in effect, the ME has taken over most of your life - that's really awful. If only you could get an endo that knows about 'ME' and would be really supportive. I really feel for you xx

  • Pinkgirl, I was answering you. Because sulamaye had her T3 cut at the same time, which is a terrible thing to do. And dangerous.

    But your doctor increased your T3, so that's not the same. In fact, you were incredibly Lucky to not only get T3 in the first place, but to also get it increased!!! Doesn't happen very often.

    Sulamaye, what can I say to you that the others haven't already said. It was a terrible thing to happen. Your doctor is incredibly ignorant and IMHO should be struck off for that! But I doubt she will be. They never are, they're allowed to go on killing patients in the name of 'guide lines' etc. I'm so sorry you've had to go through all this trauma.

    Hugs, Grey

  • Pinkgirl I don't know who the endo was I never met him! This was done on the phone by my GP! Ex Gp I should say. I am in Carmarthenshire so and have been told I have no choice about being referred to any other endo as that is up to the health board and healh board says only to health board endos!! NHS Wales makes me cry on a regular basis!

  • That's even more shocking that you never even met the endo. My endo is in Cardiff, and I was referred there whilst living there. Though, I saw him twice and that was something like 18months apart. I thought that was bad, though to never see one who is overlooking your medication is I find a bit odd. I now live in Powys mid Wales (I will just say I am about an hours drive from Carmarthen town), which of course is huge and has like a zillion different gp practices, though as its very rural, you only get to be with one practice and cant change. Anyhow, despite my gripes about some GP's at my practice and (2 complaints), to be fair, there are ones that have listened to me on certain things and have let me be referred to another endo, which is an hour travel away (opposite direction from Carmarthen) but in the local area. I could have been referred to another one in Cardiff because I was already with that particular hospital as my original referral went there. When I see this one I will keep an open mind. I also asked about an endo who specialises in chronic fatigue and was told there is one in Newport area, and I could have been referred to that one. However, I will go to the local one, who also operates in different counties outside of Powys and see how I get on there first. I am lucky I have been given a choice, and they havn't had to go via the local health board first. I am not sure why yours have to go via the local health board as I thought it was the same all over Wales. I tried to get a referral to a really good endo in England but was refused as it was out of area, but I seem to be ok, getting referrals to other areas in Wales. Could your GP not refer you to Swansea maybe? I don't know of any endos there. It's next to Carmarthenshire, obviously depending on where you live in the county. I lived in Swansea for 7 years in the past and spend time in both hospitals there for different things. I grew up in Neath Port Talbot and we would get referred to either Swansea or Bridgend. Neath always had a hospital, which got taken down a few years back, and a brand new one built in Port Talbot but everyone still gets referred out of area. I don't know how the referral system works. All I know is that I have had lots of referrals out of area, only within Wales though

  • They make it up as they go along in my opinion!

  • It certainly seems that way:-(. Not good at all

  • If you cursor down to the question/answer dated January 2, 2002. It may be helpful.

    This is an excerpt but it by a holistic doctor who dosed patients according to their symptoms and not the blood tests.

    In my experience, most conventional endocrinologists, seemingly unaware of the bell-curve phenomenon, make a trouble-causing presumption: that researchers have scientifically established the safe and effective dose of thyroid hormone for all human beings. That dose, they presume, is one that keeps the TSH and thyroid hormone levels within their reference ranges. This, however, is a false and scientifically unjustified presumption.

    web.archive.org/web/2010103...

    Another link and go to the date January 25, 2002 for the explanation of reducing meds.

    web.archive.org/web/2010103...

  • Thank you yes, but I don't think anything a non NHS dr says will be useful in making a complaint withing the NHS. I need to know the guidelines NICE set out for the NHS in how to reduce medication.

  • The nearest thing there is to NHS guidelines that I know of is the NICE Clinical Knowledge Summaries on the subject of hypothyroidism, which you can find here :

    cks.nice.org.uk/hypothyroidism

    And this info is, frankly, appalling. So if you are like me then prepare to be incandescent with rage when reading them. It spends almost no time on symptoms at all. It doesn't even mention that one of the main symptoms is extreme fatigue.

    The information on prescribing doesn't deal in any obvious fashion with reducing medication, but it is the closest thing I know of to answering your question.

    cks.nice.org.uk/hypothyroid...

    I did notice that the prescribing section does a lot of patient blaming and suggests that people who don't feel well on treatment with levothyroxine are non-compliant.

    Read all the different sections by clicking on the various tabs on the left hand side of the page. There are references.

  • There are no NICE guidelines for hypothyroidism.

    There are some documents which ended up being inherited and therefore managed by NICE but ARE NOT pukka NICE guidelines.

    cks.nice.org.uk/hypothyroidism

    As I see it, the person who is prescribing is your GP and she is fully responsible. Any attempt to pass off blame onto an anonymous (at present) endo is doomed to failure. However, if push came to shove, she might be able to claim she was acting on his say-so - but as he hasn't seen you, I wonder how far she would get away with doing that?

    I would ask for a copy of my notes. If this endo is referenced, then you will know who it is. If not, she has either misled you into believing she has had advice, or failed to put important information into your notes. Both are bad things to have done.

    In my view, large changes in thyroid hormone medication should only occur when there is clear evidence that something is going very wrong. For example, thyroid storm, or myxoedema coma. Most of the time we should do things slowly and steadily.

  • These documents are from the Royal College of Physicians website - and again, they aren't actual guidelines. They are "statements" which are completely anonymous and totally unreferenced.

    rcplondon.ac.uk/sites/defau...

    rcplondon.ac.uk/sites/defau...

  • The RCP documents refer to:

    acb.org.uk/docs/TFTguidelin...

    Which has run out of its own life (promised review) and can no longer be regarded as a valid source of anything. Besides the fact that it contains at least one error which no-one can get corrected.

  • Thanks everyone for trying to help - I will read the referenced docs and be prepared feel murderous again! My tsh was of course supressed by the t3, but so what the previous endo said reduce t4 25mcg at a time if I insisted on staying on T3, but she didn't say yeah cut both by huge amounts! Of course I am self medicating now so sod the lot of them, but I would like to be able to argue against their bleating a bit more even if it only makes them think twice about the next poor person they do this to!

  • I am also self-medicating, like many others out there as its the only way that a lot of us can re gain our control over our health. I was told last week that ordering on-line ect is dangerous. Also, based on the fact that my T4 levels are now 36.8, I should lower to 150mcg, fine ok, then if they are so concerned about me being a danger to myself with self-medicating and ordering on line as the specialist I saw pointed out that 'passports can be faked these days, i don't know what I'm getting ect, ect,', could they not prescribe me 150 as they know its legit, and do a retest is 6 weeks and go from there. If they are not prepared to prescribe that amount, when I am only being prescribed 100, then of course I am going to self-medicate. I have some idea of where you are coming from and I understand how frustrating it all is.

    Really hope that something gets sorted out for you x

  • Unfortunately with regard to the NHS, I live in Wales too and can sympathise with others who do. I was never referred to an Endo when I lived in Ceredigion as my doctor said that he often upset patients! I now live in Powys, on the Welsh/Shropshire border, and try to look after my own health (as much as possible) despite my doctor here wanting to adhere to NICE gudelines with reference to TSH. I got T3 in 2005 from a private Endocrinologist after I became very ill; after starting the T3 and increasing T4 from the 50 mcg I'd been on for four years, I became more more stable. I would fight tooth and nail if a doctor tried to decrease my dose as I'm not prepared to return to being as ill as I was.

    Karen

  • I did fight tooth and nail, they didn't give a damn, you should have heard me argue how unscientific and illogical her approach was!

  • No, I know they don't give a damn. Can you get any thyroxine elsewhere? You perhaps need to tell them how ill you are at your lower dose. Hope you can get somewhere. You have my sympathy.

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