dr is taking me T3 script away

Hi, I've been on 60mcg T3, 100mcg T4 for a few years ever since an endo at st barts explained that I wasn't converting the t4 . My gp stunned me today telling she would take me off T3 and put the T4 up to 150mcg.. I am so scared, I was bedbound before, I went through premature menopause the 2 years before they put me on the T3. My weight shot up and even though I was on a diet, I didn't lose a single pound. My depression and anxiety were terrible.

My bowel got so lazy it perforated almost killing me .

I am so scared as I'm really ill now.,. had another bowel medical emergency surgery in november fora strangulated hernia which I'm trying to recover from, I have m.e/cfs/arthritis/fibro combo, and my mental health is pretty bad, plus the weight crept back up so I need to lose 3 stone. I don't know how I'll cope without the T3.

My Gp says that everyone will get take off it soon. Any ideas as to how to plead my case? Has anyone else been told that the have to come off it too?

29 Replies

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  • Yes, i was tokd a while ago that my doc would no longer supply it. I made a fuss in the waiting room, so everyone could hear. Its down to money because the t3 is expensive. I said that i would need a rerral back to an endo, .... Next day the doc phoned and said the pct had said it was ok to stay on as i had been stable for a few years.

    Thing is i didnt take the t3, the prescription was just my insurance in case i cant get hold of the ndt........ Which is much cheaper than t3,,,, only its too frightening for the doc. :-(

    Make a fuss..... Ask to see the head of practice, point out how long you have been stable. Threaten to buy it off the internet.... Name a dodgy country and that should freak out the doc. And write to your mp and the local pctor whatever they are called now.... May be ccg.

    Liothyronine is listed in the british national formulary, so your doc can prescribe it.

    good luck

    G x

  • self treat and stay away from doctors? It sounds like you are still not properly medicated now anyway.

  • I recently changed Gps and he asked why on earth i was self medicating, when i told him my old docs wouldnt supply because its so expensive he frowned. But then his face dropped when he looked it up the costs and apparently it costs something like£160 for 100 x 25 mg tablets. Another example of greedy pharma companies cashing in on the fact that its being used more and more for thyriod cancer. Shocking when you think i pay €17 for 100 tiromel. Im quite happy buying it in myself and he agreed to do free t3 tests if i want them but these days i go by temp and how i feel.

  • I wasn't doing well on tiromel. Thank god there are other cheap T3s, in fact I recently ordered another T3 brand from supplier I got the info about from a person on this forum. That was a tremendous help to me. Bluebelgirl I will send you PM with it.

  • Hi 123-go can you pm me also with the suppliers details

  • Paulnorri, your estimate of the price to the NHS was a little under...

    From the BNF :

    Tablets, scored, liothyronine sodium 20 micrograms, net price 28-tab pack = £152.18

  • Ask your GP if she understands the consequences of taking away the medication that is keeping you alive!!!!

    Tell her to cut costs some other way!

    You have proof that you were not converting, tell her to leave you alone!

    If you are still struggling on the t3 dose that you are taking you may need an increase. Also your vitamin d, b12, ferritin and folate should all be tip top.

    Me/CFS is a diagnosis after checking that it isn't thyroid disease. You have hypothyroidism not me/CFS, they are symptoms of hypothyroidism.

    Please fight, don't let her stop t3, this is your life! not her budget!

    Sue

    thyroiduk.org

  • My post a few weeks ago quoted the Minister who said that where your Family practitioner had prescribed T3 because it was necessary for your health it was not acceptable for it to be taken away on cost ground alone. Ask for reasons in writing and complain or appeal to the CCG and certainly write to your MP and quote what you believe the Minister George Freeman said.

    They know the cost is extortionate when it is very cheap in some countries but are doing nothing.

  • Can you travel to France? Find a private doc that would write a prescription?

    I live in Portugal and my endo prescribes T4 and T3, in Portugal T3 isn't officially sold or produced. I get it from a pharmacy that orders (imports) from France.

    30x25mcg costs about 4 pounds (5 Euros)!

    It's ridiculous that the NHS pays extortion prices for medications that are cheap as chips elsewhere! If it weren't so expensive I bet a lot more docs would prescribe.

    I live in Portugal so I am not very familiar with how the NHS works. I know that in France you can buy it (Cynomel) in the pharmacies but I believe it is prescription only.

    I hope you manage a solution, it's not fair what is happening, good luck!

    Note: Just so you have an idea, T4 (Eutirox) costs, for 30x112mcg between 4 and 5 Euros. The price I pay is 100% cost as I consult a private doctor, there is not Portuguese National Health subsidy, this is the total cost REAL cost of these meds if bought at the pharmacy.

  • Yes, it is prescription only in France, and pharmacies rarely have it in stock. They have to order it. :)

  • Your GP is out of depth if they think 50 mcg L-T4 will replace 60 mcg L-T3. In fact you can't replace 60 mcg L-T3 with any amount of L-T4 as the high fT4 levels will reduce conversion to T3 and produce reverse T3.

    I would proceed in stages. First appeal the change in medication, get someone to support you. If that fails make a formal complaint and go and see your MP to complain (a letter to the MP is no use, you need to speak to them in person).

    We need to collectively kick up a fuss each time this happens or else everyone will be taken off T3 containing medicines. In the long term I suspect it will be no use self-treating as once they have blocked the prescribing of L-T3 it will be very easy to stop importation.

  • So refuse! The doctor needs YOUR agreement before he/she can change your neds.

  • I was advised to drop my dose and I refused because I was feeling ok on that dose, I knew that they need your agreement. They didn't hassle me after that.

  • It's awful I know but you really do have to stand up for your rights.

  • Just a thought - if you are so ill, why would you not want to try to adjust your meds? I don't mean come off T3 altogether, that would be just , well ridiculous all round, but you might find that you could now be converting better? That a mix of higher T4 and SLIGHTLY lowered T3 may suit better? I don't know - not a doctor, but the only reason I say this is that I have found over time (5 years+) that changing from T4 only to T4 plus T3, then T3 only, then NDT only and now NDT plus T4 has had different effects.

    I won't bore you with all the effects of each change, but I found latterly that although ending up on NDT alone and feeling better in myself than on T4, my symptoms were still totally debilitating and that after SLOWLY dropping the NDT by tiny amounts and introducing T4 in TINY amounts and increasing it accordingly, I am beginning to manage the symptoms better.

    I'm not sure that all people can be totally stable on one dose of one, or other, or a mix of meds forever. Our bodies change. I just wonder if your needs are changing, thyroxine wise, because you are still not anywhere near to feeling not too bad?

  • Sorry to hear you're having a hard time and your GP is not helping. You could just buy T3 yourself. It's what I do :)

    If you research here, there are plenty of options. I buy Tiromel and it costs me £9.99 on-line for 100 x 25mcg pills :)

  • hi jan, do you need a private prescription to buy it?

  • no bluebelgirl :)

  • I heard that tiromel is not good, I would like to get some other T3, can you send me this list too?

  • Please could you send me the list of suppliers as my GP has said that she has been told to stop my prescriptions. I have been using T3 for 9 years! Linda

  • Thank you for your help.

    Linda

  • I am on Uni Pharma now. Had side effects on Tiromel + had to take more of it than with other kinds. I am on T3 only.

  • thanks guys so much for the replies. My gp spouted some study that as well as the high cost, "proved" that T3 did nothing positive and was harmful. She said that it had been blacked out on the screen and soon she will be totally unable to prescribe it.My test results have been stable for years now, whereas before I went on T3, they were terrible..If I was to buy it, . do you not need a prescription though? I would love to try NDT, but my GP refuses to prescribe that!

  • Suggest you write to her, copy it to the head of practice. Say you are confused because you have been well for the past X years and now without your agreement, your doc has reduced the medication which was recommended by. X endo and which has kept you well.

    Say that you believe this is down to cost only and that the doctor quoted a study which said the liothyronine was of no value. You would like further details of the study , so that you can validate it, as the the t3 clearly made you well and you believe you may, in fact, be a counter example to rhis study.

    Hopefully, the doc will just give in, reinstate your meds, and pick on some other poor sod, in an effort to baalance the books.

    Good luck....

    X g

  • omg, she's already started withdrawing it without my consent by 20mcg :(

  • Jan, can you tell me where you can buy it? do you need a private script?

  • thank you so much :)

  • sorry for late reply, I don't check this forum as often as I should. I'll link you to the website I buy Tiromel via pm, no prescription required :)

  • thank you x

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