Hi, I'm hoping for some help. I was a member of a thyroid forum some years ago which was very helpful in giving me the info I needed to persuade an endo to give me T3.
I forget how many years I've been on it, it's so long! I had no idea of the current situation until I got a letter out of the blue basically referring me back to a specialist but saying it is highly unlikely I will be prescribed it any more.
T3 has made a huge difference for me and I dread going back to how I was. I'm struggling with my mental health as it is having lost my husband 2 years ago after a very long fight with cancer.
I had no idea how much the price of T3 has gone up since I was first prescribed it and assume this is merely a cost cutting exercise which patients will suffer. How I wish the government would reign in big pharma!
I would appreciate any advice as to how to proceed with this and would also appreciate any private messages to let me know of safe online suppliers.
I'm in Scotland. I'm 51, had Graves disease in my early 20s treated with tablets then my thyroid went underactive in my late 30s. It's probably been 10 years that I've been on 150 T4 and 20 T3 per day. My original Endo, who trained under Dr Tofts is no longer with us so I'm dreading the outcome of this.
Any help gratefully received, thanks in advance x
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Sorry for the loss of your Precious Husband - and so young.
If the letter says 'unlikely' it's not a definite refusal is it. Would it be worth phoning the new Endo's secretary and asking for a phone call back? Ask him/her that you be allowed to remain on your current replacement medication?
I assume that you've had Vitamin D, B12, Folate and Ferritin levels tested and now have all at good levels?
Good idea, thanks Mary. I've made an appointment with a GP who has always been supportive of my thyroid issues, I'm also going to talk to my lovely, friendly pharmacist later. I suppose I'm just trying to put a back up plan in place as I'm struggling to cope with enough at the moment and don't fancy my chances on T4 alone x
Don't give up yet. I'm hoping for a little T3 soon from my Endo but am in Wales. He refused to up Levothyroxine but now has (a liitle) so it's wait and see . . .
If you are in Scotland I would write to MP Elaine Smith. There has been lots of action in Scotland and the Petition was instigated by Lorraine Cleaver . You will see there's been lots of publicity but I don't yet know how successful they've been.
This is an excerpt I've taken from the link I gave and it should give you some encouragement.
"The sad thing is society invests enormous efforts and amounts of money on the development of tests or drugs, but very little in the adequate interpretation of test results and the training of the professionals involved.
Earlier this month, Health Secretary Shona Robison was quizzed in Holyrood on the shake-up of issuing T3 which means only consultants can approve its use.
She said: “As T3 is licensed, it can continue to be prescribed on the NHS.
“There are no plans to remove T3 from NHS Scotland.
“A small proportion of patients do not tolerate T4, so T3 is available where the clinician is satisfied that it is the safest and most clinically effective treatment option for the individual patient concerned.”
"Dear all - Elaine Smith MSP is preparing for a debate in the Scottish parliament next Weds: Weds 28th November @ScotParl 2.30 pm Public Petitions Committee Debate: Petition PE1463: Effective Thyroid and Adrenal Testing, Diagnosis and Treatment - Scotland thyroid patients spread the word on twitter/FB or see if you can attend"
I got a lovely reply to an email I sent to Elaine Smith which also contained some advice. The date for the next debate in the Scottish Parliament seems to have been changed to 4th December. I am going to take my concerns to my local MSP before this.
I would encourage anyone who hasn't done so already to watch the last debate. At the end of it a young MSP told of a relative who had been on T3 had it taken off her and put on 300mg T4 a day. The GP then reduced her T4 to 50 a day then took her off completely saying she didn't think the patient was hypothyroid... the patient had had he thyroid removed years before.... it all really does just beggar belief!
I had a phone conversation with my normally very nice GP. She stated that she 'could not debate the issue with me as it is from way above her head'.
I asked if she would support me by stating in my referral to the specialist that I've been well for 10 years and in her opinion should be allowed to continue T4 and T3. She refused saying that she doesn't really think I do need it as I am the only patient of hers on it and all the others are fine on T4 alone.
Apparently it will probably be 12 weeks before I see the specialist. I'm planning on cancelling the first appointment that comes through to hopefully buy me some more time. I'm also planning on putting my 2 monthly repeat prescription in slightly early each time while T3 remains on it.
Thanks to all who have replied and pm'd me on this. So appreciated to know that I'm not alone x
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