I have just returned from endo appt and have been told that although I have been on T3&T4 for three years that my gp will soon be stopped from prescribing T3 even though the endo agrees to me having it and my gp. Apparently it's the old post code lottery thing that the area health authority that I come under has decided that it is not cost effective and This the only thing that should be used. T3 was the saving of me -i was so ill on t4 alone and having learnt about T3 from the users of this site I read up about it and luckily my gp agreed to trial it. It was like a light bulb moment. Within days I felt like my old self and depression went, psoriasis went, brain fog went. I felt on top of the world but having had to fight for this in the first place I am devastated to be told I will no longer able to have it. The endo advised me to write to my member of parliament , which I will do, but wondered if your members had any comments to make. The endo covers a large area but only has 100 patients on T3 so they won't save much will they. Especially if they have to prescribe anti depressants skin ointment etc to compensate for the return of all my old symptoms. I am so stressed about it all and the unfairness.
GPs to be stopped prescribing T3: I have just... - Thyroid UK
GPs to be stopped prescribing T3
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Hi, I saw this. I'm not in the U.K. and I don't understand "will soon be stopped". Does this mean that even though your endo and gp approve of the treatment for you and prescribe the combination T4/T3 that you won't be able to fill the prescription? Or will you be able to fill it but you won't be covered by insurance. I noticed your symptoms. Mine were similar and have disappeared. I agree that you have to find a way to continue this combination.
Indiaza this is a UK board. We have State insurance here. We pay for health care through our taxes and the various government bodies decide what care may or may not be provided.
Hi, Ruthi. I know it's a UK board and I like it very much. There are people here from the states besides me who feel the same. We are moving in the same direction here where govt bodies are determining our diagnoses and treatment. I was unable to get a prescription without going to my home state. I was declared normal according to the charts. I'm following this string with concern for all of us. Best.
I feel deeply for you. I am in the same situation, I have received a letter from the GP stating they will not prescribe T3 for me in future, even though my health has improved dramactically and I have stopped visiting the GP all the time. I am scared for my future, all of the symptoms that you list improved for me also. I don't want to return to feeling so ill when the medication I need has been identified and works so well.
I am on t3 only from gp as I was so ill on thyroxine. Even combining t3 with t4 made me I'll. This is my fear it maybe stopped. I am also thinking of moving so not sure if a new gp would prescribe it. If a medication helps your condition NHS should be pleased not make you sick by taking it away and then you would have to make more visits to go for all your symptoms
Red jane, which area are you from? I know a lot of people on T3 from another group ( as I am) and wonder if your endo is unfortunately scaremongering unnecessarily.
The scandal of course, with T3, is that it's high cost is due to the NHS bring ripped off by the one and only British supplier of T3. The British Merciry Pharma T3 is costing the NHS over £200 for 28 tablets whereas in Europe it's only a few euros for a packet of the same in France or Greece for example.
So, if you are told that it has to be stopped, the answer to that to the GP is to ask them to prescribe a European branded T3 which can be obtained much more cheaply. If you write to your MP make sure you mention the NHS price scandal of T3, as I'm sure we wouldn't experience these problems if it was correctly priced.
Thanks for the advice. I don't trust what the endo has told me because one minute he was telling me it was the cost then he is saying me to cut T3 down to show willing then he says that the is dangerously low.(well it would be on T3 wouldnt it?) he then tells me he has 100patients that he prescribes t3 for so I ask for him to prescribe it for me. He replied he can only prescribe 2weeks at a time? I come from Billericay in Essex and go to Basildon hospital.
Hello Redjane. It's so unfair. I live in the Rayleigh area and got my GP to give me a private referral to an Endo at a private hospital in Southend. I saw Dr A which was a waste of my time & his plus £200! He totally refused to entertain prescribing T3,, said it's too hard to monitor and 'we wouldn't want to go down that road'. I've since obtained a list from this site of T3 friendly Endo's. Theres one at Basildon who I assume you have been seeing as he sees NHS patients. I was going to ask my GP for a NHS referral to see him in hope of getting T3 but after what you are saying I'm not sure it's the way to go now. I've also (agin through this site) been researching self medicating with T3 but as yet haven't taken the plunge. I get by on Levo but I know I could be so much better. Good luck with obtaining your T3.
Hi. Dr A whom you saw isn't really interested in thyroid. He is a diabetic himself and only interested in diabetes. I saw him myself a few years ago and it was a complete waste of time. Not only was he wondering what I was doing there but seemed to think my G.P had lost the plot. He was extremely condescending and rude and I never want to have anything more to do with him.
Perhaps you could ask him for a refund.
I don't see Dr A mine is Dr. K. Lol. Thanks for the support though
Sorry I must've misunderstood I thought you saw a private endo in Southend Dr A. That's the person I was talking about. I also live in Rayleigh .
No I go to Basildon hospital.
Hi. Your right on the money there with Dr A's attitude. He was rude & spoke to me like I was a 5 year old with a grazed knee. Dr K is the one on the list I received from this forum. As you said in your original post they are not going to save much money because they will have to prescribe other med's to manager your condition. They may be highly educated Doc's but common sense is offer lacking. Good luck with you quest for T3.
Well wheres the harm in seeing him? it would be interesting to see how you get on. To see if he says the same thing to you as he has to me. I would advise that you read up a bit about it so that you can deflect some of obstacles that he may put in your way.
The Minister is aware of the cost issue re T3 but seems unconcerned.I am not on T3 but was told that " healthcare professionals in primary care have a duty of care and decisions should not be made entirely on a basis of cost of the medicin. If a patient 's local clinical commissioning group(CCG) decides that a treatment should not be provided that the patient and their doctor have requested,patients must be provided with the reasons for that decision in writing. Patients can appeal against this decision through their clinician or by contact (sic) their CCG directly to make a formal complaint."
This was a letter from George Freeman MP last November and the third response I have had - each shorter than the last as they get fed up with me .
So it hasn't done you any good to appeal then. How are you coping? I haven't seen gp yet but am hoping he will help me as it was him that listened to me in the first place when endo said there was nothing he could do to help me when I was so ill. I am terrified of going back to feeling like I did on t4 only.
As I said I am not on T3. I was writing having read the many cases of folk in your situation and the ridiculous overcharging to the NHS. I am doing ok on T4 alone but have tendon pains which may be related .
So do try the complaint/ appeal route.
that is exactly the way to go from here , with the exception of finding out [ from your local press/paper ] who sits as the chair of your ccg [ it has to be a locally sited gp- usually ] and contact , lobby etc with the correct information , backed up by your condition improvement since being on the current medication regime - which can be proved by your records together with the savings to the nhs of the extra perrifial costs of other meds /appointments for gp/ hospital / prescriptions etc...that will be needed . Then the fact that your gp has a proven duty to YOUR direct healthcare that does NOT encompass financial issues IN LAW and can be prosecuted if they do not argue your particular case correctly ...... I do not take ' bunkum ' from anyone at any time , and it does work .....alan
Hello Redjane I also remember that light bulb moment when given the addition of T3 in 2007. I was on T4/T3 combination for 7 years until November 2014 when I received a letter from my GP to say they would not fill my next prescription, which was due in about 12 days time. This was done without consultation and left me feeling extrememly anxious. They were happy to continue prescribing T4!
I then bought T3 on the internet, but unfortunately for me it didn't seem to work very well and my health deteriorated over the year. I then saw the Endo (lovely man) who originally added T3 to my medication in 2007 and he wrote to my GP and said he thought I had benefitted from the addition of T3 and he would try to see if he could get it prescribed through his hospital. I waited months only to hear back that the hospital panel was not prepared to fund this for me as I was 'out of the area' (although this hospital is in the same county and is covered by the same CCG where I live).
I have written to my GP, the CCG and the Endo in my nearer hospital, but the CCG is adamant they will no longer prescribe T3 on a long term basis. I provided them with the results of the DIO2 test which showed I do not convert T4 to T3 due to a faulty gene, but this is apparently not recognised. I am sorry to be so negative and I don't wish to worry you further.
However it's not all doom and gloom as in October 2015 I started taking NDT, WP Thyroid, bought on the internet and I have now increased to 3 1/2 grains and can honestly say I am starting to feel positive and enjoying life again. I think I actually feel better than I did on T4/T3.
Unfortunately the end result is that I have lost confidence in the medical profession and will get my bloods checked in the next few weeks through Blue Horizon. In her reply to my letter, the Endo at my local hospital did offer to monitor me on NDT until I am stable, but I declined.
So please don't despair, there are other options available to you - by buying T3 or NDT online without a prescription. The only downside is that you will have to self fund, which is a disgrace.
Although I wouldn't want to go back to T4/T3 I am still considering writing a letter to my MP so that she is aware of the CCG's across the board decision on T3 for all hypothyroid patients. Wouldn't it be nice if we could be treated as individuals.
I am sorry to have been so long winded, but I hope that my experience will help you in some way.
If your L-T3 has been stopped it is important that you complain formally and make an appointment with your Member of Parliament, it's no use writing to them, you have to see them in person. The NHS are ignoring the increases in the price of liothyronine and letting the patients take the hit. The only way to change matters, help yourself and help other patients is to speak to your MP and get them on the case. Importing L-T3 jsut makes the situation worse for everyone.
This is a lie.
I certainly hope so but what evidence do you have that it is?
Hi Redjane,
Well done in getting the Endo and GP to agree to the supply of T3 for you in the first place! May I suggest that you get the GP to continue providing you with prescriptions that you can use to get T3 from abroad. It means you will have to pay for the medication but it will be worth the price to stay well.
It's disgraceful that we are being made to suffer this way. As for the costs - my under-treated hypo has caused me to develop fibromyalgia. Thus I have cost the State more in terms of several more medications, Consultant's appointments, medical investigations, blood tests, 12 months off work, in addition to my pain and suffering. Just exactly were is the saving to the State??
Wishing you success, Maggie
If your advocacy is not successful, you should be prepared to acquire T3 from the internet. PM me if you want info about sources.
The only comment I would offer is, it is absolutely incomprehensible to me how so many people who have "MD" behind their names, can be ignorant that disorders of T4->T3 conversion are why traditional TSH+T4 treatment frequently fails.
I agree. I am beginning to think there must be a lot of back handers going around that prevent the NHS waking up to the idea that Mercury pharma having g a monopoly on supply is bound to lead to high prices. They must know that T3 can be purchased much cheaper abroad. Thanks for caring.
Hi the autumn, November I think. I still have supplies at the moment but will have to investigate alternatives.
It's to do with who commissions and buys services from who, and who gets allotted prescribing responsibility. Area prescribing committees need to assess where the areas of greatest need and effectiveness lie to focus resource - they need to budget just like anyone else. Your endo, if they are convinced that this works for you and evidence supplied by you says it does, could take on the prescribing of this if they wanted to and almost certainly more cheaply than your GP can. Hospitals are given massive discounts by drug companies that primary care (I.e. Your GP) just doesn't get the advantage of.
Ultimately both your endo and GP are independent clinicians and responsible for their own clinical decisions.
Hi don't surprise me at all. However when he sits there and tells me that he can only prescribe 2weeks at a time as if I was an in patient at the hospital - how can I contradict him without knowing the actual position. I could cry as I think he is bull******** me all along to avert the anger and frustration coming from me. It's not my fault my hands are tied situation. I wouldn't trust him as far as I could throw him but what choice do I have. I am an ex payroll manager not a doctor. Lol
Many thanks for the help. I need to go and see my gp first to see what he says before I get on the campaign trail and buying from abroad.
can you pm the list too. x thanks
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