T3 on the NHS

About 2 years ago i had all the nec private tests done with Genova, Red Apple, Doctors Data etc and was seeing a private endo. She advised me and prescribed me to start T3. I sadly lost my job therefore my healthcare at that point. Since then I have been battling with the NHS to get T3 on prescription on a "named patient basis". I also tested positive for the DIO2 gene(from both parents) . My GP wanted to prescribe T3, he wasn't allowed to. He referred me to Addenbrookes endo who wrote him a letter basically calling the private endo and T3 treatment controversial, also saying any labs would have to be done at Addenbrookes (a complete lie) and that he wouldnt take me on. I subsequently found out someone who was on T3 about 3 streets from me and gets her labs done in my town. The CCG finally caved in and said I could have T3 on prescription IF an NHS endo would get me stable on it and then i could continue it with my GP. My local endo said no, I then heard of another NHS doctor in Milton Keynes who prescribed T3 so my doctor referred me to him...UNFORTUNATELY mentioning that i had been declined by Addenbrookes (not sure why he did this). I got a letter from this Physician saying the British Thryoid Association is steering practitioners away from t3/t4 replacement and that seeing me would not contribute towards my care. I am gutted to say the least, i saw this as a real light at the end of the tunnel. On top of that my GP who has fought so valiantly for me, often prescribing me GF food as i am extremely hard up is leaving in 1 week. I am devastated and feel lost without him. He is willing to write back to Milton Keynes as a last chance saloon type thing and Im wondering if there is any ammunition, anything anyone thinks I could get him to write that may sway the MK doc to see me and prescribe T3. Thank you in advance.

15 Replies

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  • Danifox6,

    I am sorry to hear of the terrible trials you have been put through with no end in sight.

    I can't think of any additional info that might sway the Milton Keynes doctor. Maybe the fact you had sort him out made him think he was attracting too much attention. If it were general knowledge he was prescribing T3, perhaps he was terrified of being reprimanded or worse, struck off.

    However, you could email Louise at louise.warvill@thyroiduk.org.uk and ask for a list of sympathetic doctors who members have had previous positive experiences with. There are private and national health doctors and endos on the list.

    Good luck,

    Flower007

  • I think, as you have tested positive for the D102 gene that you should have a conversation with your MP. You may already have read these links but it is imperative that you are prescribed T3. The BTA make untrue statements in their guidelines both for T3 and NDT.

    Take with you the following article for MP to keep.

    I think if he phoned any doctor few would know about the D102 gene.

    Extract:

    Firstly, you need to know that everyone inherits two copies of each gene, one from their mother and one from their father.

    To explain this paper briefly, the DIO2 gene activates tri-iodothyronine (T3) and the researchers found that a tiny fault in this gene could mean that although the body gets enough T3, the brain doesn’t.

    The researchers found that patients on levothyroxine (T4) alone felt worse if the faulty DIO2 gene was inherited through one parent and worse still if they inherited the faulty gene from both parents.

    thyroiduk.org.uk/tuk/resear...

    I haven't been tested for D102+gene but the addition of some T3 made such an enormous difference. Re T3 and Dr Lowe himself due to thyroid hormone resistance took 150mcg of T3 daily. Extract from following link:

    Now, to address your rheumatologist’s assertion that T3 is dangerous, and his implication that amitriptyline is not. I think the best way to reply to him is to quote publications that are available to him. In the USA, when patients get their prescriptions filled for T3 (usually the brand Cytomel), the pharmacist usually gives them a leaflet on the product. The leaflet contains the following statement:

    "NO COMMON SIDE EFFECTS HAVE BEEN REPORTED with the proper use of this medicine." (Medi-Span, Inc.: Database Version 97.2. Data © 1997.)

    drugs.com/sfx/levothyroxine...

    Tell your MP that T3 (liothyronine) is the active hormone required by every receptor cell in our body and the brain contains the most. If you're body is incapable of converting you remain permanently unwell and much more damage could occur. Tell him you've asked for a 'named patient basis' (cheaper T3) as the UK T3 is exhorbitant and that may be the real reason for the refusal.

    This statement makes a fact perfectly clear:

    When used sensibly, T3 is extraordinarily safe among prescribed drugs. When I say extraordinarily safe, I’m comparing T3 with drugs such as the amitriptyline which your rheumatologist prescribes for you. Below is a list of potential harmful effects of amitriptyline. This list comes from the Physician’s Desk Reference, 53rd edition, Medical Economics Company, Inc., Montvale, 1999, page 3418.

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

    hormonerestoration.com/Thyr...

    Finally - a case before the Scottish Parliament at present.

    thyroidnation.com/fighting-...

    You obviously will have a short time with your MP so leave copies for him to peruse at his leisure. He can also contact Lyn Mynott who began Thyroiduk.org.uk due to her experiences and that we now have more than 25,000 members on HU searching for help/advice and many are recovering because they are forced to purchase their own hormones when hypothyroid is a serious life-long condition which means other prescriptions for whatever illness are free.

    It's easy to find out the times that MP has 'open surgeries'.

  • I am so sorry to hear of your battle to get NHS prescribed T3. There is such a variation in GP & endocrinologist prescribing policy in the UK. After a 5 month struggle of asking GP for T3, researching and self medicating on T3 privately purchased I have just seen an endocrinologist who is willing to ask my GP to give me a small dose of t3 to use with t4, however I did get the old wives tale about NDT being of unreliable potency and t3 only being bad for your heart and bones etc

    This whole area of thyroid treatment needs to be overhauled. Unfortunately the impetus will be partly generated by thyroid patients like yourself who have to go through such struggle and stress but are willing to fight and go to their MP if necessary.

    I sincerely hope there is a good outcome for you amidst this utter lottery of thyroid treatment policy.

  • I too am very sorry to hear of your appalling treatment which is so familiar to most of us!. I know nothing about this gene but will now check it out because When I take T4 only or even a combination that has high levels of T4, even in NDT form I become more and more hypothyroid. After 10 years of battling it is clear to me that somehow my brain does not get the required T3 and I suffer all sorts of horrendous symtoms.However it has been a long and painful journey for me and I am still not comepletely stable on T3 only..it's not easy. Because I could get NO HELP from endocrinologists I initially bought in T3 from America. I wouldn't recommend this because you have to be careful with doseage..but then again no one helps you anyway? I also have tried NDT on numerous occasions but my brain closes down when taking this sadly. T3 is the only thing that works..so in desperation I wrote to my GP saying I would not be able to take T4 anymore as it made me so ill. She sent the letter to my unsympathetic endo who reluctantly agreed to give me T3 on the NHS. He understood that I would die if I took nothing.

    Be firm. Ask to see any endo and make it clear that you need to try T3. Some of it is about money ..some of it is just ignorance on their part . Good luck.

  • I'm newly diagnosed and because of horrendous side effects of levothyroxine I stopped taking to just over a week ago! I didn't realise you could die if you stopped taking it? How is that the case after god knows how long I went undiagnosed!

    Keep up the fight for your right to be given T3! I'm just beginning my journey and have asked for a second opinion with another gp! Shall take it to my MP too!

  • Just to be clear..if you have some function from your thyroid you will not die..just be profoundly unwell. But generally the thyroid produces less and less thyroxin over the years and even less when we add in levothyroxin thyroxin..because it's a feedback system, plus if you have hashi's your body is constantly attacking your thyroid which eventually destroys it. I am at the point where my thyroid is very very small..so without thyroxine of some sort I have mega symptoms..couldn't even talk or swallow at one point. T3 is better for me than T4 ..but I still have problems..and of course no help from endos.

  • I get prescribed T3 only by my endo in coventry and Warwickshire. My GP honours the prescription request sent by endo

  • I would travel anywhere tbh. i only need it until steady with an endo then the surgery can continue it.

  • Thanks for the replies. I am going away today and my GP is going in a week so its sent me in to a flap and i cant concentrate On what to tell him to write before he leaves. Im thinking to the point but generic so that i can send it to a couple of endos and my MP. Ive recently been awarded higher rate disability and thats crazy. i want to see if t3 will work for me and make me better i am also a single parent to a 5 year old so i NEED to be better.

  • If anybody could help me start with a template i would appreciate it If not will try and get straight

  • I live in Somerset. Years ago I was having major problems which I was sure was thyroid related. My GP would not listen. I also had urticaria and dermographism. I was 999 into hospital with a heart problem and then managed to see a brilliant dermatologist. She listened to me, and felt my thyroid results were not right. I went to a brilliant Endocrinologist simply because of the Dermatologist. He put me on 10 mcg T3 and lowered my levothyroxine. Within two hours I felt normal. Quite literally. My GP refused to prescribe it basically saying it was useless. I got in touch with my MP, the CCG, the Daily Mail, and anyone who would listen. My Endocrinologist who could see from the bloods that it was working agreed to prescribe it. This drug was not so expensive then. However I asked for special 'purchasing powers' from the CCG and finally they instructed the GP he could prescribe it. There are only 2 x patients at my surgery on this drug. Now suddenly because of cost - told this direct from the CCG GPs in Somerset are not allowed to prescribe it, no special name lists or anything. And I have to rely on my Endocrinologist - who knows what this drug means to me. He knows for me it was 'the answer' I no longer want to kill myself because T3 helped me so much. Those GPs and specialists should speak with patients like myself before they push us off the edge.

  • The idea above of writing to your GP to say you are unable to take T4 anymore because it makes you ill seems like a powerful way for the Endo to have to take notice. It would be an easy letter to write as your time is limited.

    Good luck x

  • It's ridiculous. If you were allergic to any other medication that you needed for life, you would be found an alternative. There is definitely something afoot in the medical world because this is being withdrawn right left and centre.

  • In 2,013 my gp took me off Eltroxin on which I was on for 40plus years with no adverse effects. I was forced onto levthyroxine with immediate adverse effects. The pharmaceutical company who presecribed the branded one are now selling it in Canada. My gp told me that I would have to stay on the unbranded one or see an endo. I was furious and wrote to the minister of health and my letter was submitted to the some old fart in the House of Lords who had the effrontery to state that levothyroxine was identical to Eltroxin when I know that it is not.

    Well I began purchasing NDT off the net but was concerned about the source, so today I went for an appointment to see an endo at our hospital and I was all guns blazing but was very pleasantly surprised at the candour and understanding of the consultant who enorsed all my findings that it was all about cost effectiveness and whatismore, he said that he had about 50 patients who made the same complaint as me and made the suggestion that he would prescribe T3 with T4 and monitor it until we got the perfect balance. Therefore, it is your human right to have access to the correct medication and if one endo is willing to prescribe it then it should be uniformly prescribed by another.

  • Please could you message me the name of the endo ? Thank you

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