hello I need some help! what is the max dose of t3 you can get on the nhs?

I just came back from the doctors, I am currently taking 4 grain of pig thyroid and I am self medicating with that along with 20mg of t3.

I am still experiencing symptoms of chronic fatigue, exhaustion, mental health issues, suicidal thoughts, dark thoughts, etc. I am also experiencing difficulty relating to people and participating in social activities because i am constantly bed ridden and exhausted.

I went to my doctor and told them that I feel that the pig thyroid medicine is not really helping me and my boyfriend doesnt want to carry on paying for it.

I asked my doctor if he could give me the equivalent dose which is 100mg of t3.

He looked up on his medical book and it said that the maximum dose of t3 is 60mg in order to achieve normal levels.

so he has prescribed me 60mg of t3 and said that is the max he can go.

eeek

is that true that max is 60mg on nhs? or can they go higher than that?

15 Replies

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  • HypoHippo, 60mcg T3 is the recommended therapeutic dose so it may be the maximum your GP is prepared to prescribe. There are members who are prescribed more on the NHS but they are probably treated by an endo.

  • I suspect that there will be two types of GP who might prescribe more - those who understand, of whom there seem to be very few, and those who have little clue what they are doing. Neither is much real use because you can't find the first sort and the second sort is no use beyond the prescription itself.

    However, the medical book might have been the British National Formulary, which says:

    initially 10–20 micrograms daily gradually increased to 60 micrograms daily in 2–3 divided doses

    evidence.nhs.uk/formulary/b...

    I do NOT read that as a maximum but rather as a fairly common high-ish dose which a GP should find unexceptional.

    I agree with Clutter that an endo might (and I emphasise that "might"), be more willing to go higher.

    Rod

  • I think you've been very lucky to get 60. The NHS would not give me more than 30 and wanted me on 20 per day for fear of me going hyper. Kept me ill for two years.

  • both my husband and my daughter were prescribed 120mcg T3 on NHS which did them no good at all whereas NDT /pigs thyroid has turned their lives around

    Have you been properly tested for

    Ferritin

    Folate

    B12

    Vit D3

    low levels of them especially Ferritin may be reason your not well

  • awaiting to get tested again

  • Hi My NHS Doc prescribes 80mcg daily for me and has done for last year.

  • I have heard reports of members on higher doses, I know one member who is prescribed over 100 T3 on the NHS.

    Don't forget to make sure your vital minerals are optimized too, some find they make quite a difference to the dose needed J :D

  • The endo. I saw would not prescribe over 60mcg, although Paul posted on here that there is no maximum stated. My GP decided that I shouldn't have anything at all as I am not hypo. not having been diagnosed with tsh test. Therefore I buy my own T3 - not dead yet!

  • U are very lucky to get 60mcg of T3. My GP has refused to prescribe any even though the Endo requested it.

  • Caze, appeal to your local CCG to overturn your GP's decision as your endo has recommended T3 treatment.

  • Hi Clutter

    What is the CCG?

    GP said policy was not to prescribe meds on NHS because I had seen Endo as a private patient although a doctor at the surgery did the referral - no mention then of not prescribing meds. So spent a grand on consultations/ tests etc fr what.

    Wonder if this is NHS policy and do people know. So if u do not want to wait mths fr yr heart bypass and pay thousands out of yr own pocket and have it done privately does this mean that u have to pay for any drugs u need. Ditto cancer surgery - wd u then have to pay fr yr chemo/radiotherapy?

    I did ask these questions but was not graced with a reply. I was then offered a referral to a NHS Endo so I picked one on the thyroid UK list but u then get someone else. Had an appt. with a bright young thing who will see me again in 3 mths time and I am to stay on the same meds even though I am exhausted and she noted I have lost my eyebrows - or part of them plus most of the hair down below. But there might be a light at the end of this 10 year tunnel. They do in exceptional circumstances prescribe T3! So if I grovel enuf, cry enuf, lick the doctors shoes, threaten to slit my throat and wait long enuf I might just might be given the medication I actually need. Not bad after working for 50 yrs and paying loads of tax for the NHS - still someone has got to pay for those £100,000 a year GP salaries and all those tattoo removals and boob jobs.

    In the meantime I have bought some T3 and will be using it alongside the low dose of thyroxine I am currently taking. I have to have another bld test on 15th Sept so I will have to ditch the T3 before then. Any ideas when I shd stop it so it does not shown up in the test?

  • Caze, CCG is the Clinical Commissioning Group which replaces the PCT. My GP told me our local CCG had instructed GP practices not to prescribe T3 except in exceptional circumstances. My NHS endo prescribed T3 and the GP practice issues repeat prescriptions.

    T3 should be out of your serum in 6/12 hours but will be in your cells for another 48/72 hours. Don't take your Levothyroxine until after your blood test eitheer. Why don't you want T3 to show up in your test?

  • Hi Clutter

    Thks fr the info. I don't want the hospital to know I am self medicating with T3 and buying it off the internet. They think I am on thyroxine only. I want the hospital to prescribe so I can get T3 on the NHS if pos plus some medical supervision wd be nice especially since the doc raised some questions re my diabetes.

  • Caze, I self medicated after my FT3 was below range and endo wasn't bothered/interested. Six months later we argued about his belief that there were no good random controlled trials to prove T3+T4 combi was beneficial, but he agreed to prescribe because of the huge improvement T3 made to my health (and possibly because I said I would buy on the internet if he didn't). I don't think he would have prescribed had I not shown such improvement.

  • Yes I might not have adopted the right strategy - this is a wrk in progress and difficult to manoeuvre when u cannot think straight, my T3 was below rge or v low fr years but always told this was insignificant and only the TSH was important. This was from 4 different endos over 10 years. Now I can have T3 in rge but no difference. I think perhaps things are well and truly messed up from yrs of being incorrectly treated. An important fact which I learnt from this great website is the importance of iron and having managed to get it up to 51 from 28 I think I have more energy.

    Besides the T3 saga there are other things going on and new Endo is querying diabetes diagnosis (2009). This is interesting. - I just wish I did not have to wait till Nov fr follow.up.

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