Hi all
Had TT in aug
Had rai in Oct
T4 was put up in jan and lost my marbles with anxiety and depression
Endo dropped T4 and added T3 for 4 weeks
And I am doing a lot better
Hospital won’t keep giving me T3
Went to see gp and put my case forward
I have a resistance to T4 converting and TSH need to be under 0.1 to stop cancer returning
Gp gave me 28 days T3 and repeat for 5 months
Had a call from surgery and they have cancelled my repeat
What do I do next?
Have you asked your GP why your repeat prescription has been cancelled? There might have been a mistake or a misunderstanding. State clearly that your endo says you need T3. It is up to your endo and GP to sort this out about who is going to fund what you need. If necessary contact your endo and explain the position.
Endo called me to tell me they have stopped it. He is going to write to them
He said I should speak to them
He said I should speak to them
So that's the first thing that you should do. If necessary, follow up with the endo, depending on the outcome of the conversation with your GP.
If your endocrinologist says you have clinical need of T3 then you should be prescribed on NHS.
Your endocrinologist probably needs to organise an individual funding request on your behalf
Standard protocol is that initial 3 months is prescribed by hospital pharmacy that endocrinologist is at. Then ongoing care and cost of prescribing is taken over by GP
See page 34
fundingrequests.cscsu.nhs.u...
Which CCG area are you in?
Some are more difficult than others.
sps.nhs.uk/wp-content/uploa...
british-thyroid-association...
thyroidtrust.org/a-gp-write...
Hartlepool and Stockton on tees
Looks like they are one of the difficult ones
thediscoverypractice.co.uk/...
Endocrinologist should continue prescribing via hospital while he sorts out individual funding request on your behalf
You may need to see your MP face to face to get them on your side
And ring CCG direct, speak to local PALS etc etc
It's all about the cost .....not about the clinical need
Or, you could save yourself a considerable amount of time, effort and heartache by switching to NDT, which is by far and away the best answer to get your health back if you no longer have a thyroid gland.
I suffered for 8 years on Levo alone with my GP and even 2 endos failing to inform me of the existence of combined Liothyronine and Levothyroxine treatment. They failed to tell me about NDT also! I had prescriptions for the T3 during the RAI treatment but how on earth was I supposed to know that you could take the 2 products together? The GMC INSTRUCTS doctors to inform relevant patients of these sorts of things so it is unforgivable for these to be kept secret from the patient.
My gp and endo won’t allow me to use NDT
Even if I buy it my self
You are an autonomous being you’re GP and Endo cannot stop you from using NDT.
Won’t do me bloods on NDT
With me having cancer. I don’t feel confident to look after my self
I'm in a similar position, having had cancer 6 years ago. I buy my own and get my own blood tests. But it took me a a year or so of putting up with NHS treatment before I was ready to do it.
Unfortunatelty you're between a rock and a hard place. Your options are probably:
1) Fight to get your T3 reinstated, which means writing letters and contacting MP, CCG, etc, keeping up the pressure and possibly coping with nastiness and being knocked back. Might have periods without your T3.
2) But your own. In your position I'd definitely consider getting a few packs in case you get left without. The more extreme position is to learn how to dose yourself and go completely on your own (many of us do this).
There may be an option 3, to learn how to dose T4 correctly, get yourself on an optimal dose and see how you feel. Many people do badly on T4 and think it doesn't work for them, but really they have been on a very wrong dose. Doctors often don't know how to dose it at all.
After my TT I'd have found Option 1 impossible, because I was too ill. But if you're up for the fight its probably the best thing to do.
Thank you x
Good luck! You're in a hard position and it's a disgrace that the current system puts patients in this position 
My daughter had similar problems and i wrote to my MP outlying both the guidelines and the local PCT behaviour. She wrote to dept of health who agreed that my daughter should be prescribed T3 if endo says so, and after presenting this letter to my GP surgery they have agreed to prescribe for her (albeit reluctantly)
I had to but T3 for her in the interim, and it took a few months but you can fight this ...
Don’t give up!
The late Dr Skinner said that most TT patients did best on Armour Thyroid. Even though you don’t feel well, i’m Afraid that you will have to take this on to make you well again. Thyroid U.K. cd point you in the right direction. It’s so cruel to start feeling better and then have it snatched away from you. Fingers crossed that you can get this sorted.
Whichever doc said that you need T3-only straight after a TT to prevent the cancer coming back is absolutely RIGHT. You should be on T3 - only for at least three months. That is what I got and I will never forget the day that the doctor told me at the end of my three months, she was going to put me on "the good stuff". I remember telling her that I felt perfectly well, why are we changing. And that was the beginning of the nightmare that we read so often here. Go back to that doc, write, telephone, go knock on the door and make sure s/he knows what is going on. S/he can write a prescription regardless of the system then you have to run around different pharmacies until you find one that will fill it, but that is easier than getting the prescription in the first place. If you can't find a pharmacy to fill the 'script look to Europe, I believe Germany is the place to start. There is a light at the end of the tunnel for all this, many of us have gone through this awful process.
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