Endo Prescribes T3 - GP's computer says NO!

Ah well, Not quite a success story yet!

Why did my guts tell me this was going to happen?

Having been told by the Endo I saw a few weeks ago that he would prescribe T3 for me on the NHS. I find that when I visit my GP today that despite him writing in a letter to her that I'm currently taking approx 55mcgs and will need to experiment a little more to get things right for me, possibly adding in an extra dose later in the day (done). My GP can only prescribe 20mcgs daily according to her computer! A months prescription will only last 8/9 days!

She sent me packing without a prescription and I now await the outcome of a Pow wow with the Practice Manager which I fear will not go well, He refused even to send my to an Endo!

Better get back on the internet and order up some reserves! :(

I feel frustrated but not beaten. I've got this far so I'll just bow and scrape until I get what I need.

Sadly she sighted the cost of T3 as the issue. I asked, "how much do you think my health is worth to me", unable to answer. She was clearly as frustrated as I was, so she'll do her best I guess.

34 Replies

  • don't give up :(

    I get 160mcg daily from NHS! it 'can' be done, but it is a fight I agree :(

  • Unfortunately a fight I have yet to win :(

    It's worth pushing though, isn't it. You never know! Especially if you can formulate a good argument such as needing fewer appointments due to feeling better, not needing antidepressants, blood pressure meds etc. It's got to be more cost effective in the end. Especially when you don't develop diabetes, osteoporosis and heart disease among other expensive life-long conditions that are associated with hypothyroidism :D

  • oooooo no. I'll take bets that diabetes, osteoporosis and heart disease are on the "allowed list" of conditions that they get paid extra for diagnosing. :D

  • I hadn't thought of that :(

  • Unfortunately true :( but actually treating Thyroid optimally/properly (& my fav VitD) can help associated conditions (have you read Dr Broda Barnes book?).

    We could really save the NHS some money! If only....

    J :D

  • Well said CarolynB.

    I'll keep pushing gently and hopefully my small requirements will be allowed. Congrats to you Nobodysdriving I shall continue the fight.

    Always was a bit of a scraper!

  • She is talking rubbish. She can prescribe according tod the British national formulary.... Which she either has on her computer or in paper book form. You can log in to the British national formulary yourself and look up the amount which is allowed to be prescribed.... ( its 60 mcg a day). They call it Liothyronine. Suggest you look it up in the bnf and print off the page. Sen d it to your doc and the head of practice with a letter querying why your doctor will not let you get well,...


  • well, on the BNF they give a 'suggested'/'typical' dosage, so any amount can be prescribed, as much as one 'needs'. No one at my GP surgery dared to say I was only allowed up to 60mcg when my endo asked them to prescribe 160mcg daily.....

    I suggest not showing that page as you do not want to give the wrong impression that they can only prescribe up to 60mcg, what if you need more one day? the original poster is already on 55mcg so not too far....

  • Funny isn't it - here we have 20 mcg tablets so "usual" dose is 60 mcg. In the USA they have 25 mcg tablets so "usual" dose miraculously rises to 75 mcg!!!!

    All based on three tablets a day - rather than any other more meaningful assessment of dosage. :-)


  • I'm going to sit tight and see what happens tomorrow in their lunchtime meeting. If its a NO! I'll write and state BNF suggested/typical dose to suit!

    Time to go chop up some more doses, such fun??

  • Hi if you get a no i would, if you feel up to it go to your local mp what did we all go to work for and pay national insurance for to be kept ill when there are things out there that can make us better. i get so mad about these people who play god. a Favourite saying of mine Never say Never one day it could be them in the firing line ill and not get treatment Good Luck xx

  • I to have fought my GP on this for ten years, I saw a consultant mid march who prescribed T3 he also sent a scathing letter to my GP stating that there is no cost issues with prescribing T3. Get back to your GP. Best of luck xxxx

  • Thanks all, Lots of ideas to fight back with.

    I could quote that I was on 3/4 Maxalt per week for Migraine control at £5.36 per tablet! Until December last year.

    That works out to much more than a months supply of 20mcgs of T3. Another angle to use I guess.

  • Hi,

    While its all being sorted can't you get a prescription from the Endo?

  • Hi Jacksatlast,

    Complain, complain, complain!!! I was diagnosed with Diabetes 4 nearly 5 years ago after having reoccuring Thrush. I did not believe the diagnosis but I didn't and still don't have any other symptoms of T2 Diabetes, hence I refused medication and tried to control my condition with diet and exercise. No matter how much I exercised and restricted my calorie intake I did not loose enough weight or get my blood sugar in the "normal" range. After 4 years of struggling I gave in and said to my GP that I would only take medication if it was Glucophage SR and he provided me with a blood sugar meter and testing strips. He had refused the testing equipment because I wouldn't take medication stating that it was not PCT guidelines and then not in the NICE guidelines, all lies.

    Anyway, after less than 3 months on the Glucophage I queried my sudden weight loss and reduced blood sugars. I told him that I thought it was my hormones causing the Diabetes but he just said your hormone levels are normal. I didn't even know they had tested them! Following x-rays, ultrasound and a CT scan for an unrelated pain in my left side I was diagnosed with a calcified nodule on the right lobe of my Thyroid. I have since been diagnosed with follicular variant papillary cancer and had the right lobe removed. I am now taking 75mcg of Levothyroxine but only after complaining to the Endocrine nurses via email about a not so satisfactory appointment with a registrar at the Oncology outpatients. The nurses organised an emergency appointment in the joint clinic a few days later and I saw my Endocrinologist. He was reluctant to do much at first but he listened to my concerns and saw my symptoms of hypothyroidism and gave me a prescription for Levothyroxine to collect from the hospital pharmacy. If I'd waited even longer I wouldn't have any meds for another 2 months.

    Since I have gone through this rollercoaster of a journey I got a repeat prescription of my Diabetes meds. However, it was replaced with a generic form of Metformin. I wasn't happy with this and went back to my GP. I explained my Thyroid problem and that my Metformin had been changed to the generic form and it was not working, it wasn't! My blood sugars were through the roof!! He apologised and changed the computer records so that my future diabetes medication is Glucophage SR, the branded variety, and he specified the manufacturer on the computer records so that I don't get the cheap variety.

    I know my GP is running scared because he ignored my concerns about my hormones and I now have cancer. My own research has educated me more and I now know that I probably never had Diabetes but an underactive thyroid prior to the Diabetes, the symptoms were there, and that the cancer has been mimicking the normal hormonal function of my Thyroid by churning out TSH in the normal range. If not, the left side of my Thyroid would have taken up the slack!

    My advise is to get banging on that GP's door and if necessary contact your local PALS. It would appear that NHS costs are being used as an excuse to give out cheaper medicines that may not be suitable for all. My branded Metformin is now working for me but because I am hypothyroid and so ill, I am unable to exercise like I did before the operation, it is a slow process to get my bloods back to where they where.

    Good luck.

  • Since when has a computer been the one to prescribe or not as the case may be??!!

    That is appalling. Fingers crossed that you get your prescription in the not too distant future.

    Unbelievable. See another doctor in the practice if you can and see if he/she has a 'computer' that says NO.

  • Oh no! Fight and fight some more. This is unacceptable.

  • I'm not done yet by any means. I will write to both Endo and GP's if the outcome of today's Pow Wow is a negative.

    Ironic really. GP and Endo wanted me to have more Thyroid Bloods taken today, so they have a bench mark for me starting T3! When I pointed out that I've been on T3 only for 5 months now, she said we should do it anyway. Pointless waste of their practice money I'd say! Logic pots missing somewhere here!

  • hh46 I hope your good Endo is on the good endo list?

  • He is, that's where I found him. :)

  • hi I'm new to health unlocked, I have recently started t3 with Dr P but am trying to get it perscibed on the NHS I can see its going to be along battle. Can I ask where you get the list of good endo's

  • Hi Gale

    Drop me an email - louise.warvill@thyroiduk.org



  • hi Louise I would be very grateful for the list of good NHS endos.


  • Drop me an email Gale and I'll get it to you. :)


  • Hi, you need to email Loiuse at Thyroid UK she will email it to you.

    Well get there in the end I'm sure.

    Good luck to you too

  • Forgive me here but your Endo prescribed you T3 on the NHS and your GP said NO?

    Excuse me who does the GP think it is? You have been given a prescription for NHS T3 therefore you are to have it.. End of story.

    If the Endo had privately given you T3, then your GP would have been correct in saying NO!.

    To be honest I am insensed a GP would refuse to provide an approved prescription on the NHS. Fuss, I would kick up merry hell if mine pulled that stunt on me.

    If your Eno prescribes it on the NHS, then it is available in your area so. If the Endo prescribed in privately then it probably isnt available in your area.

    I would argue that point well and truely hammer it home. Failing that I'd ask for a signed letter stating that your GP and your GP's practice has refused not only to obey an Endo's prescribed treattment on the NHS but also to block your gaining the medical treatment sanctioned on the NHS by your Endo. To place a copy of said signed letter in the waiting room or send to each paitent letting them know, the GPs and practise have refused to treat and medicate as per senior Dr at the hsoptials have asked to.

    That letter I can say hand on heart they will not do. So they have 2 choices, prescibe and treat as per Endo, who is fully qualified to do so and is a consultant not a GP. Or sign and give you that letter, for you to take up further withe the governing bodies of the GP's etc.

    GP's ought to remember, patients pay their wages, refusing to prescribe medcines and refuslal to follow a senior Drs treatment instructions means patients will cmplain and they will find their wages short.

  • Well said! If we let them get away with it then they will continue doing a rubbish job.

    Complain in writing and be a thorn in their side.

  • YES I WENT TO GET MY T3 AND THE CHEMIST SAID HE WAS HAVING A problem with the manufactureres, he suggested i put mt prescrip in early-- he added that it is not given out much- i did get it from boots. it is disgraceful.

  • I am dropping in a letter tomorrow but also need to write to athe Endo as well and gt him to send a much clearer letter confirming he's agreed to my having T3.

    Not giving up now.

  • I finally persuaded my GP to try me on T3 after five years of up and down tests on levothyroxine. He started me two months ago on 20mg a day half tablet twice a day and told me to re tests in 3 months. After two months I felt so unwell I knew I needed an increase had test and my result came back as TSH level of 100. Was told GP had read results and told me to carry on with same dose and retest in a further 3 months. Phoned on call Dr at surgery who said I was clearly being under treated but she did not want to be the dragged in to it the Dr who told me to carry on phoned me the next day and said it takes a long time to adjust to new medication carry on for 3 months he wasnt going to prescribe an increase but I was welcome to go on one of the American websites and purchase desicated thyroid if thats what I felt I needed to do or just start taking 100mg levothyroxine again with the twenty mg T3. Went in to see another GP at surgery yesterday after complaining to practice manager who just seemed to be going through the motions to protect the original GP. She said she would ring an endo to see if he could advise her on what to do but would not be able to get back to me until next week in meantime just carry on with dose you have been told IE 20 mg T3 100 mg Levothyroxine. They clearly have no idea what or how to treat cases of hypothyroid that do not respond well to standard Levothyroxine and seem to be so restricted with budgets and legislation they are afraid to prescribe anything else. She told me there was no way they would even give me a private prescription for NDT for me to pay for myself through the pharmacy as it is not a recognised treatment and does not get tested in UK NHS.

  • 2474, This tale gets told so many times doesn't it? Much the same as my GP, so scared to help even thought they are allowed.

    My GP phoned yesterday from her home! Said because my Blood tests showed over range T3, under range T4 and suppressed TSH (not sure what they expected if T3 is all I'm on) that she sought advice from another Endo who told her she couldn't prescribe.

    She then asked me to buy in some more T3 from my source as she didn't want me to get ill again!

    Has asked me to send a letter and proof that she's allowed to prescribe if she feels it is the best treatment for me.

    Talk about everyone running scared and covering themselves.

    I'm really angry with myself for not stooping T3 early enough for it to have not shown up in the Blood tests for what they are worth.

  • Hi, I was lucky enough to get the T3 from my GP, on my Endo,s instruction, but only took them for a week, not sure whether they suited me - don,t know what I was expecting really. Anyway back on my Levo, not feeling too bad the last couple of days - with me, like probably alot on this website, I can have good and bad days, I think thats just a part of being Underactive. Keep fighting, I hope your get your T3 and I hope it makes a difference to you. I personally wouldn,t buy and drugs over the internet..... there has been an awful lot of bad press. Take care, Kath

  • Hi,

    It seems I don't convert T4 so can't really go back on that but the Cytomel I currently use is a sound product from a pharmacy abroad. There has been a lot of bad press lately but most of it is unfounded I think.

    I just need to be under the care of UK NHS just to monitor and help if needed. Until I get T3 prescribed on the NHS they will not put that I'm on it in my records.

    Not a good idea if you have an accident! I would be in trouble if they refused to let me have it in an emergency situation! Hence the on going fight.

  • I work in a pharmacy and it is not uncommon for a gp not to prescribe what a consultant has recommended this is for a variety of reasons such as cost or that the gp does not agree is not prepared to oversee the treatment. They do not have to prescribe what a consultant recommends in these cases the prescription is done by the hospital

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