T3 declined by CCG

Hello Everyone, I have read your posts with interest. I developed Hashimoto's Disease at the age of 16. I live in Brighton. For the past 16 years I have been taken a combination of T4 and T3. Last year the local CCG has made a decision to stop prescribing it and no GP or Endocrinologist it at my local Hospital seems to be want to prescribe it, however I have heard that some people in London are still getting it on the NHS.

I came off the T3 last Summer and my health and wellbeing deteriorated both physically and mentally. I have a history of Depression.

I restarted the T3 this year as I still had some left and felt so much better. My Pyschiatrist supported my GP with many an Individual Funding request to the CCG, which the CCG has declined and has stated my case is not 'exceptional'. I asked to be represent at the Panel Hearing to represent myself, but they said a decision had already been made! I wish they would listen to the patients!

My Pyschiatrist has issued me with a prescription of T3 and I am waiting to see whether my Pharmacy can get it in. The Manager seems to think he will be able to get it (fingers crossed).

The CCG say I can appeal the decision, but a further Panel only considers if the decision was made fairly in accordance with their principles and doesn't consider any new evidence. I understand there is a further right to appeal.

It is very frustrating, for now my Pyschiatrist says he will continue issuing prescriptions until I see him next and then we can develop a plan.

I am so pleased I have found this Pyschiatrist, someone who understands. He advised T3 came out very favourably in the STAR D study in America and he thinks it will be becoming more back into use and Pyschiatrists use it to help depression in patients that don't have a diagnosis of a thyroid problem.

We have a diagnosis of a thyroid problem and still can't get it!

I am concerned about what happens if the Pharmacy cannot get it in stock and why can I buy it from abroad, with or without a prescription. I would be grateful if any one has any advice.

It is such a battle, especially when it is our own wellbeing at stake.

I wish you all good luck on this journey and so happy to have found this forum, we are in this together!

Best Wishes to you all

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18 Replies

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  • Hello, you might want to look at Clutter's replies in this thread for suggestions, You will see there that you have options depending on whether you might be able to persuade (say) the psychiatrist to issue you with a private prescription or if you opt for the cheapest route which is to source from other countries. healthunlocked.com/thyroidu...

  • It is totally wrong that you have had T3 prescription stopped. You have clinical need

    CCG's are deliberately mis-reading the guidelines. It is only under consideration of not being prescribed by PRIMARY care (i.e. GP's)

    If a specialist says you have clinical need then you should be prescribed

    See these guidelines from British Thyroid Association

    british-thyroid-association...

    british-thyroid-association...

    At recent meeting in London Dr Graham Jackson clearly stated that this is the situation

    nhscc.org/about-us/whos-who...

    Suggest you try GP again taking in paperwork to back this up and contact your CCG direct

    Write to your MP too

    Have your say on this NHS England consultation

    engage.england.nhs.uk/consu...

    Some useful links

    healthunlocked.com/thyroidu...

    healthunlocked.com/thyroidu...€20-for-30-tablets-25mcg-from-boots.-feeling-miles-better

  • Hello, Thankyou so much for your kind reply and your advice, I really appreciate it. I will definitely appeal the CCG decision and send them the documents you have suggested. I will ask my gp and consultants and psychiatrist to help with the appeal. It feels a difficult path to try and bring all the evidence together and get all the doctors to help me appeal. It makes me feel so angry that so many of us are in this position! Thanks so much once again, wishing you well

  • These CCGs are a pain in the proverbial. My CCG has stopped T3 prescriptions. However, I printed out the British Thyroid Association guidelines which say if a patient is established on T3 & continues to derive benefit their T3 should not be stopped. You have a psychiatrist behind you saying you do need it. You have taken T3 for 16 years. So that's three in your favour.

    I suggest that if you can afford it, do a private DIO2 gene test to see if you have a faulty thyroid gene. regeneruslabs.com/ It costs about £160 but well worth it to see for sure what's happening in your body. Only a saliva test so easy to do. If your hypo / hashis was discovered at age 16, you could well have this faulty gene where your body can't convert T4 into usable thyroid hormone T3. If it returns as positive, it's one more in your favour. I personally got this test back as positive & it did swing T3 in my favour.

    The last time I saw an NHS endo I went armed with 5 different print outs, including the DIO2 test results, the BTA guidelines, the Hippocratic Oath with 'Keep up to Date with medical information' highlighted

    thyroiduk.org/tuk/NHS_Infor...

    Consultants are able to by-pass the CCGs. I hope you can get your T3 back. In fact you may discover that your body can only utilise T3.

    I personally have been in a psychiatric unit once & been an out-patient once. On both occasions in hindsight, they were when I was chronically undermedicated for Hashis and hypo.

  • Hello, Thankyou so much for your kind reply , I really appreciate it. Thanks for the information about testing for the faulty gene, I suspect many of us have this. When I was just on Thyroxine my T3 level was always at the very bottom or start of the range and the endo and go would always say it is normal! And would not listen when I said I felt unwell, they would say the symptoms were not anything to do with my thyroid! I feel so much better with my T3 levels at the top of the range and I am certain it also boosts my mood. I have heard adequate T3 also makes antidepressants work better. I will definitely consider getting the gene test done. I will try and get my endo on board so far he has no input to the IFR and simply said it has to be done by my gp! My psychiatrist added information to the application due to my history of depression, but they have come back saying T3 is not a licensed treatment for mood stabilisation and they said no info was included about my diet or exercise in terms of helping my depression. I feel really well at the moment on the T4 and T3 combination. I think it such as shame there seems to be such a lack of knowledge from GP”s and even endos and we are up against the politics of it all and NHS cuts! Do you have any problems getting your T3 now from pharmacies! Hoping your health is now good and wishing you well. I will let you know how I get on!

  • I have got a 6 month supply of T3 from an NHS endo. However I'm trying the homeopath route currently. I want to see if it works so I haven't got to rely on a bad tempered endo dishing out my T3 ! Good luck

  • Hello, I am so pleased you have got a 3 month trial, that's great. I would be interested to hear also if Homepathy helps you. With the DI02 Test, on the lab site it says £81.00p Genetics, £81.00p Hormones and £81.00p Thyroid. In order to have the D102 gene test, do you know which options I need to select? Do I need two of these tests or all three? Do you also know if I would need to come off the T3 prior to having the test done, to show I have a difficulty with conversion?

    Many Thanks and Best Wishes to you,

  • The Regenerus site is a bit confusing when you are looking for the DIO2 (three letters, one number) test. You would need to phone them and they will be very helpful. It's one test, the price of around £140 (I think. Or £160?). Because it's a genetic test Regenerus have to either offer one of their counsellors to contact you with the results; or you can have the results sent to a doctor. I think it's a legal requirement because it's a genetic test & some of these tests can be giving extremely bad news. It's not wise to have the results sent to your doctor, mainly as they don't understand the results. For the price of £140, you get the result + the requisite counsellor contact you. You can take your medication before doing the saliva test.

  • PS Once you have been contacted by phone by their counsellor, you are able to see the results and print them out. You can then present it to all your doctors - if positive results.

  • Thankyou so much for you advice! Much appreciated.

  • Thankyou so much for your reply, I will definitely appeal, it’s so reassuring to know their are options, even though it feels like a battle. Wishing you good health and wellness.

  • I had to fight to start on T3 this spring. My endo said I had clinical need and prescribed privately while I requested NHS prescription

    Initially GP & CCG said no, but I took the BTA guidelines in, and got 3 month trial.

    For me it's always been my legs that are so badly affected. When not on right dose I can't walk.

    Difference on T3 was so profound, I was barely walking before.

    I then did DIO2 gene test which was positive- this has perhaps helped me keep my T3 (for the moment at least)

  • Hello, I am so pleased your Endo was able to prescribe privately and that you have had such a good result with T3 and managed to get the trial. With the DI02 Test, on the lab site it says £81.00p Genetics, £81.00p Hormones and £81.00p Thyroid. In order to have the D102 gene test, do you know which options I need to select? Do I need two of these tests or all three? Do you also know if I would need to come off the T3 prior to having the test done, to show I have a difficulty with conversion?

    Many Thanks and Best Wishes to you,

  • The actual DNA test is £81

    But you have to pay for counselling as well at £65

    thyroiduk.org.uk/tuk/testin...

    Unless ordered via private doctor (who has to do counselling instead)

    No DNA test is allowed without counselling

    It's easy test, though you need to produce a lot of spit so allow more than 15mins!

  • Thankyou so much for your advice!

  • Join ITT (Improve Thyroid Treatment) campaign group on Facebook. There are many template letters to MP's, CCG's and responses to various things. Please join us in our fight to save T3.

    I've had to go through all this and am currently waiting to have IFR done.

    Please sign the petition if you haven't done already and help spread the word. change.org/p/itt-campaign-g...

    We can do ITT!!

  • Hello Everyone,

    Happy day today, I got some T3. My Pyschatrist prescribed it and Pharmacist managed to get it in. On the box it says the Manufacturer is Morningside Healthcare

    Thankyou for all your help and advice on her. I have sent an appeal letter to the CCG with quite a bit of evidence eg, BTA guidance, NHS England Consultation re: primary care, General Medical Services Contract and NICE guidelines. I sent this to my MP also.

    I have also sent a letter to my Endo saying he needs to support me to apply for T3 and say I have a clinical need for it. T3 was given to be 16 years ago by an NHS Endo and I was on it for 16 years. That Consultant then retired. I have seen two new Endo's that were sympathetic and said they felt T3 could help some patient's, however one of them simply said the GP had to do the Individual Funding Request. Basically my GP did it and my Pyschiatrist added information to it.

    I really feel that Endo's should be playing a much larger role in this process as my Endo hasn't written anything to support my application and hasn't said that I have clinical need for it, he just says only GP's can do the application which I think is unfair as on the whole most Endo's should know more about the thyroid than most GP's.

    What have your experiences been? Have any Endos being writing a supporting statement to go with the IFR? I feel this is maybe a deliberate process by the CCG. Is there anyway we can campaign for it to be mandatory for Endo's to contribute to the IFR and explain how a person has improved etc on T3.

    I asked him to be part of the process, he checked with the Head of the Department (a lady I have met that previously didn't like being on T3) and he came back to me saying they could have no involvement in the application! It just feels they are all washing their hands of it and don't want to know.

    I have signed the petitions on here and done the NICE Survey, quite basic would be good for more space to write in depth, but will email my story as mentioned soon.

    I am going to get the D102 test done and see what the result shows, as if positive it may help my case. I just wondered what people's experiences are of having this test done, is there anything particular you need to do or just do the saliva sample, you don't have to come off your medication to have it done? Is there anywhere else that does the test also, apart from the Lab in Surrey?

    Wishing you all well on your journey. Best Wishes,

  • Hello Eveyone, I have just had my D102 Genetic Test Result back, I am disappointed, it says I don't have a genetic predisposition for a decreased T3 synthesis, Homozgous Wildtype TT.

    A bit disappointed I don't have the faulty gene as I was hoping if I did it could help me get T3 prescribed my CCG. I don't expect I will have much luck with my appeal now.

    Any ideas?

    Thankyou.

    Best Wishes to you all

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