Levothyroxine is the treatment of choice for hypothyroidism

Letter received from my GP.

"GP's have been advised, that in line with the N.I. Formulary, levothyroxine is the treatment of choice for hypothyroidism. We have been advised that patients unwilling to accept this treatment have seen private providers for prescription of liothyronine. Where this occurs, private providers should not be referring patients back to their GP for a prescription for liothyronine under the NHS. We expect the private provider to issue a private prescription and manage this treatment privately."

(Note that the NHS Consultant Endocrinologist has had to be attended privately as the NI NHS waiting list was so lengthy and I realised I was seriously ill, thankfully now stabilised on a T4/T3 combination and extremely challenging symptoms including bradycardia have reversed!)

My GP states; I have to review my prescribing of this medication outside of Health Service recommendations and indeed outside of the licence. At this stage, if you are wishing to continue to remain on Liothyronine long term you will need to discuss receiving a private prescription from the Consultant Endocrinologist. I am sorry but I do have to review my prescribing in light of the guidance I have received.

Any suggestions?

Where can I get T3?

Mourneadventurer

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51 Replies

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  • That reads like a generic letter rather than one that is personalised to your circumstances given that your troubling symptoms have been reversed with this useful combination. Is it worth putting this to your GP in a letter and stating your intention to appeal if s/he is unable to use appropriate clinical judgment as to your improvement on the combination?

    Failing that, yes - your Endo. reads as if s/he is onside and would be prepared to oversee your dosage, monitoring etc. However, altho' a private prescription would enable you to obtain cheaper T3 in France (if practical for you) - much would depend on the consultant's fees for doing this.

    Otherwise, you might need to accept supervision by the consultant, but possibly have to follow some of the suggestions on this forum for self-funded blood tests to monitor your dosage and alternate sources of T3 as these might be rather more affordable?

    ETA: if you take a particular 'brand' of T3, do you need to add that as your preferred option in your OP? Because, otherwise, you might need to experiment, depending on what is available as formulations elsewhere.

  • Thanks again ITYFIALMCTT for your encouraging pm and these suggestions. We are definately between a rock and a hard place.

  • That's awful and I can imagine very worrying for you. Why is no one listening to us 😠😤.

  • Thanks Kitti for your encouragement, our voices aren't being heard as yet. Someday soon?

  • No-one is listening because NHS funding is being reduced to scandalously low levels. I have read that T3 is very expensive. Making cuts is all this nasty government cares about.

    I'd say that this is absolutely a government problem! GPs have to pay for drugs and treatments out of their limit budget.

  • T3 is only very expensive when the NHS buys it. They are being ripped off by the pharma company they buy from, and although they know this they do nothing about it.

    T3 is actually cheap from some places in Europe e.g. a couple of euros for 30 pills of 25mcg T3 is not unusual (if you go and buy in person).

  • That's the most awful part of it all. I buy 300 tablets of T4 for less than £70. And yet the NHS can't manage it.

  • Do you mean T4? I think you probably made a typo.

  • Yes I mean T4 and not T3. I get both.

  • In which case I am not sure I understand. Levothyroxine typically has an indicative price to the NHS of around £1.66 per 28 tablets (50 or 100 micrograms). Which is about £18 for 300 - I think. :-)

    bnf.nice.org.uk/medicinal-f...

  • Well they get it cheaper than me then lol.

  • Mourneadventurer,

    Health authorities and CCGs in the UK have been advising GPs for some time that recommendation for prescribing Liothyronine should come from a NHS endocrinologist or other NHS specialist. Ask your private endocrinologist whether you can be switched to his/her NHS list or ask your GP to refer you to a NHS endocrinologist. In the meantime, show your GP the statement from the BTA and see whether that makes any difference british-thyroid-association...

    28 x 20mcg Liothyronine costs £258+ but you could ask your endo for a prescription for 100 x 20mcg Thybon (German) which will cost €30.15, or French Sanofi Cynomel 25mcg which is probably around the same price. Alternatively, Greek, Turkish and Mexican 25mcg T3 without prescription is reasonably affordable.

  • Delicious21,

    It is not a government decision. DoH and government of the day are advised by the British Thyroid Association that "Levothyroxine is the preferred thyroid therapy". Mourneadventurer's GP has been advised by the NI Formulary not to prescribe based on recommendation from a private endo.

  • Delicious21,

    DoH does not tell GPs what to prescribe. NHS England is considering advising that Levothyroxine is a cheap and effective alternative to T3 which they consider to be a low value drug but it is still at consultation stage. NHSCC have said it will not be a blanket ban.

  • Delicious21,

    I read the letter before I responded to Mourneadventurer. What point are you trying to make?

  • Delicious21,

    I read it differently. That the GP has been advised that Levothyroxine is the preferred treatment and if the patient doesn't accept it and wants to see a private endocrinologist who will prescribe T3 then the private endocrinologist should prescribe the T3 and not expect the patient's NHS GP to do so.

  • Yes, this is correct Clutter.

    My GP stated,

    "if you wish to continue to remain on Liothyronine long term you will need to discuss receiving a private prescription from the Endocrinologist".

  • Yes Delicious21,

    when my hands and fingers became like a bunch of bananas, my hair was falling out, lost the outer third of my eyebrows, couldn't climb the 13 steps to bed, couldn't sweat, couldn't sleep, couldn't stand on one leg to put my clothes on, couldn't walk in a straight line, poor short term memory, ached all over, my 60 x 60 vision became cloudy and my heart rate dropped dramatically from its normal 60bpm to a very challenging level along with feeling that I had a scredriver through my foot and excruciating lower leg cramps.

    I requested a second opinion as I told my GP I had a DIO2 polymorphism. He asked me what I thought was wrong with me as all of my TSH and T4 results were "normal".

    The NI NHS waiting list was so long I decided to go privately and my Endo has been supportive ever since. My GP has issued the T3 on a monthly basis only.

    I have been paying to see the private Endo since this happened and I also pay for all of the subsequent scans and tests that never had been checked by my GP in 28 years+.

  • I've been on T4 for 28 years. Thankfully I've only been unwell since October 2015. and got to see the private Endo in August 2016 I've been paying privately since then.

  • So sorry to hear what you've been through. We've all suffered, some of us very badly, and many continue to suffer for lack of suitable treatment for a disease that

    cannot be 'cured'. Our only hope is hormone replacement that helps us as individuals. This is no fun! It's a very taxing way to live x

  • Delicious21,

    Read the Management of primary hypothyroidism: statement by the British Thyroid Association Executive Committee onlinelibrary.wiley.com/doi...

  • Thank you Clutter for your encouragement, support and promt response.

    Having crawled back to health this has been a devastating blow. The impact of being on a T4 monotherapy for 28+ years left me clinically hypothyroid with very challenging bradycardia. Since the supervised addition of T3 my heart rate has headed back towards normal. I can tell to the second when I need T3 in the afternoon!

  • Suggest you ask for referral back to your endo via NHS (might have to wait) but meanwhile carry on seeing endo privately & private prescription as necessary.

    When you (eventually) see your endo on NHS you should be able to get T3 prescribed on NHS but perhaps only if its Mercury Pharma

  • Thanks SlowDragon,

    unbelievable that we're being denied access to the active hormone we need.

  • I don't know the answer to this Delicious21. I always thought that the endo recommended and supervised the treatment and that the GP had to defer to his professional opinion and issue recommended prescriptions.

  • You are entitled, through NHS to second opinion of your choice.

    GP would not be breaking "guidelines" to offer an NHS referral to your endo

  • Thank you SlowDragon

  • Nope. GPs don't have to listen to specialists.

    They can take their opinion into account then ignore it when treating a patient.

    Unfortunately GPs are a law unto themselves. Only if you are in the right professions, or complain in the right way if the patient dies/ is seriously injured are they taken to task.

    If the patient doesn't die or isn't seriously injured they can claim as a defence they weren't given sufficient budget to treat a patient from the NHS England/Scotland or whatever.

  • I am finding something similar. My GP has been a mixture of being impossible to talk to, appearing rather uninterested and hiding behind what he calls National Guidelines - I ca't see him helping my cause as did not respond when I asked him if he would support me if I decide to appeal. It feels like we are banging our heads against a brick wall.

    AnnSimpson

  • Hello Ann,

    Categorically they should be measuring the uptake of T3 inside the cell where it's needed. The fact that they are measuring the inactive hormone that is circulating in the blood is beyond comprehension.

    I was within range with bi annual NHS T4 testing for the last 30 years!

    If we have genetic polymorphisms such as MTHFR, MTHRR, CBS, and DIO2 we need T3 to clean out the intracellular toxins.

    As we become more clinically hypothyroid our immune systems become suppressed and become fair game to opportunistic invaders.

    We expect our GP's to do no harm.

  • This is the advice for GP's from BTA

    british-thyroid-association...

    And for endocrinologists

    british-thyroid-association...

  • Worryingly - neither document advises what to do if a patient that is considered to be stable on LT3 or LT3/4 refuses to be moved to LT4 monotherapy.

    Question: do we have any rights when it comes to insisting that treatment is not changed?

    I know for a fact that if I go back to LT4 only, I will be very poorly indeed.

  • Likewise an unthinkable option for me.

  • mourneadventurer !! My eyebrows have become really thin in the last 12 months or so... from your experience, any ideas why? (just read your bio)

  • I kept digging to get the answer for my GP i.e what did I think was wrong with me!

    My journey to recovery and a reversal of symptoms listed elsewhere have led me to believe that its been the perfect storm.

    Genetic predisposition i.e not methylating correctly and therefore not detoxing heavy metals, endo and exotoxins efficiently. Thinking that taking T4 montherapy was working because all of my results were within range! I never had thyroid antibodies checked surprisingly they were also within range but I was never told there was an auto immune component in the background.

    My immune system was surpressed unbeknownst to me and I went in search of why a question I should've asked 28 years ago!

    I discovered I'd picked up some unwanted passengers i.e viruses, bacteria including those that create biofilms to hid from my immune system.

    Afer baseline tests I've boosted my immune system, replenished minerals and vitamins especially vitamin B, going after the unwanted passengers with specific herbals.

    Use an infra red sauna to sweat out the heavy metals, toxins, a PEMF mat to chill out and am now trialling a PEMF hand held device. The journey continues.

  • I find it worrying that the GP states that the drug is not to be issued on advice/guidelines and outside of the licence. Does this imply that they think that liothyronine is no longer a licensed medicine as well as stopping the NHS prescribing?

  • I have no idea Cwill, I defer to those more experienced than I to interpret.

  • You are going through the same process as I am at the moment. I have had to have tests done privately and am awaiting the results as the NHS consultant would not talk about or test for T3 which I have been taking in combination with T4 for many years with great results. I have now been feeling very unwell for nine months since the T3 was withdrawn. I am now waiting to see a private consultant and think I will have to source T3 from abroad. There are many ideas given on this website, so good luck and I will be doing the same very soon

    Ann Simpson

  • Best Wishes on your journey back to full health.

  • The treatment of choice for who? You weren't well on said treatment. Are they honestly saying that although there are a myriad of ways to achieve optimal thyroid function that you were supposed to stay on a treatment that wasn't providing you with this? I think think is how the government is going to achieve privatisation through the back door. For the first time in my life (I'm 48), I paid for private blood tests two weeks ago, to get a sense of how my thyroid levels were. I've decided, based on how I feel, backed up with evidence to add a small amount of t3 and to supplement but d3, iron, b12 and folic acid. I'm afraid if we are determined to feel well again then we can't rely on the NHS, that's obvious. I'm pleased that you have managed to see a knowledgeable Dr and are on the road to recovery.

  • Hello Bijourain,

    Thanks for your encouragement I'm working with a functional nutritionist as well as the Endo who concentrates on Thyroid function.

    Perhaps look at L methyl Folate (B9) instead of Folic acid (synthetic) . Check your B12 doesn't contain cyanide I.e cyanocobalamin should be methyl,hydroxy or adeno cobalamin.

    The B vitamins are made in the gut so a good probiotic wouldn't go amiss along with a prebiotic such as inulin. You might have to go back to check if you've any unwanted passengers first?

    Best Wishes.

  • I've received my Kefir starter kit today, so going to make my own probiotic. Funny you should mention unwanted passengers. I've been thinking about that mysrlf. In 1997 I went to the Dominican Republic and became hospitalised with severe food poisoning. On my return Watchdog ran a section on the hotel is stayed in. Anyway, there were many of us who became I'll, some more so than others. We took First Choice to court as a group action and five years later we won our case. I'm wondering if I got something whilst there. How on earth would I find out if I have got any unwanted parasites?

  • A Doctors Data stool test over 3 days would be a good starting point. This test can identify the pathogen and usually mentions the herbs or drugs that will eradicate them. If you want the name of the Functional Nutritionist I'm working with pm me.

    Good Luck

  • bijourain

    don't drink you kefir in a big glass. To start with water or milk kefir....start very slow. for a few days, one tablespoon, then if you don't feel bad, a shooter glass, again for a few days and if you don't have any bad die off syndrome, drink as much as you like.

    i had a very very bad experience, by drinking too much to start with and the cleansing brought on my thyroid problem.

    all the best x

  • Thanks Mojas 😊

  • users.sa.chariot.net.au/~dn...

    if you have a rainy day and want to read up about kefir, here is everything to know about kefir.

    it will take you forever to read through all of it.

    xx

  • Very good thanks Mojas.

  • Hi everyone, I have just been diagnosed with hypothyroidism and put on levothyroxine.

    I don't know numbers of test result just had them checked and doc said initially it was borderline ie sluggish last year. After third test showing changes he said I needed to go on levothyroxine for life.

    It all fitted with how I had been feeling.

    I have been reading about the other end on here and people getting it privately. As I am new to all this what is the difference? Also should I take zinc and if so what strength?

  • Hello Lottie67, in retrospect I wish I'd asked why I'd become hypothyroid and paid attention to educating myself about supportive diet, supplementation and lifestyle adaptations.

    The THYROIDUK website is worth exploring and I found Dr Isabella Wentz's books to be particularly helpful. Insist on receiving a copy of your blood tests and then post them on here in a new message to let others who are further along the road than I help you.

    As for supplementation it is best to test and not guess that way you can get a baseline from which to work and then monitor.

    Good Luck!

  • Thanks for that, so I guess it's important to have a print out of results. Would you tell me why?

    Also is it standard that go deals with it?

    Do you not see an endocrinologist?

  • When you post your results include the ranges. GP's are generalists and will keep you within a statistical range for that test. As we all all unique it is helpful to post your results if you want to and others might pick up on something the GP has missed. It is standard that the GP deals with it however if you feel you are not improving you can ask for referral to see an Endocrinologist and join the NHS queue. Some forum members couldn't wait that long and have gone privately to see an Endo.

    Best Wishes

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