Very interesting for me! Some of you may have read my previous posts about my fight to keep my T3 medication??
Anyway, even though I had to report a Endo nearly two years ago because of her lack of professionalism in her treatment of me and her dismissive attitude to the T3 saga, I am still being prescribed it (lucky me she says). Since that horrendous consultation, I have had two annual reviews of medication. I have not been tested for T3, so I have not questioned it and it has still been prescribed. (don't want to rock the boat)
Anyway, in the post yesterday, I received a letter from the NHS - which I was not expecting, not requested but I am going to ignore. The letter says, "We are now in a position to offer you a appointment in the Endocrinology department, please ring this number above, if we do not hear from you in the next two weeks, we will refer you back to your GP"
Now I have been in touch with my GP, as my last TSH result was high compared to previous results, but at no time did he suggest referring me to the hospital but all that was said was that I was to be retested three months later, which is sometime this month and that if it was still the higher figure, then my T4 medication would be increased!
I don't know if this is a ploy to get me off the T3 medication, but they can't do that can they if they have not tested my T3 hormone level?
Should I just ignore the letter and wait to hear from my GP which I think is the best plan?
Thanks for any advice in advance.
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JOLLYDOLLY
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That is what I am thinking Shaws - I was only referred initially because I was and have been on it for many years. My GP told me that it would have to be a Endo who could prescribe it but at the hospital I attended, the Endo had already dismissed the T3 before I got in the room because of the price.
She did do the T3 test then and I was middle range, so felt that was enough to say I was on the correct dosage. But. she wanted me to reduce it until I was "weaned" off it, which I refused. It does say on my prescription 10 mcg a day, but they still give me the same prescription as I have always had, so I have continued to take it as I have always done. They have not tested my T3 for nearly two years. So I don't want to rock the boat. So can't see how they can refuse me.
So I think I am going to ignore the letter.
If the worst happens, who can I report them to - is it a medical board?
Just don't take up the appointment - after all we want to save the NHS the money if the consultation isn't going to be in our favour and if all they want to do is reduce or remove T3.
One doctor who was also a scientist only took a blood test for the initital diagnosis and would never prescribe levo. Only NDT or T3 for thyroid hormone patients. This doctor was also an Adviser to Thyroiduk.org.uk.
You should also make an appointment to see your local MP to complain and also look at TUK's page as they are taking action to try to reinstate it as many cannot recover without. After all it is not our fault that the pharma companies raised the cost of this product and are they trying to fleece the NHS?
Members who have taken T3 or are prescribed do not recover if it is removed. We have also signed petitions to try to have it reinstated.
Even scientific research has found that a combination T4/T3 helps many. Some people can only take T3.
JOLLYDOLLY what did you do about your Endo appointment in the end? It’s unbelievable what we thyroid patients are being put through. And you even have a valid prescription (currently)! Their attitude makes my blood boil. Grr...
And if I’m allowed to mention it here (and you’re allowed to reply!), would you mind PM-ing me your T3/ Tiromel source from years ago? Having trouble finding some, and am running out!
Funny you should ask.....I had a follow up letter from the hospital saying that I was being referred back to my GP but I could still ring them and push ahead. So I did ring them and asked why I had been sent it in the first place? Basically it is a clerical error on their part, due to a backlog of appointments. So I confirmed that I did not want to see a Endo and I would go elsewhere if I did lol. I also got a call from my GP Practice asking why and I confirmed it was a clerical error and no I didn't want to see anyone.
I have also had my review and I am still being prescribed all medication and T3 for another year. (Thank Goodness!)
Regarding the T3 source, I no longer have it unfortunately, because the link I was given does not work, so I assume are no longer selling it etc. I was a bit worried about that anyway so would have been reluctant to recommend, just in case it was dodgy.
Are you having trouble with your prescriptions then? I hope not.
What a relief to have the T3 for another year JOLLYDOLLY - you must have been thrilled! 😅
My GP won’t give me T3 or refer me to an endocrinologist, even though he can see what a difference the T3 has made to my health.
I think he’s annoyed because I asked for it for 2 years, feeling that my thyroid wasn’t working (in fact I was very ill and in tremendous pain, I spent the time mostly housebound), and he said I shouldn’t believe everything I read on the internet - even if it was from various Thyroid charities!
So of course eventually, absolutely desperate, I went behind his back, ordered some T3 and my life changed for the better within a fortnight. And then continued to improve!
I didn’t mention the T3 to him, but he sent me for more bloods and it was obvious from the T3 / T4 balance/ ratio that I was taking T3 and he was really quite cross with me! Said it was very difficult to treat someone who was also treating themselves.
I see his point, but I wasted 2 terribly sick years listening to him and giving the NHS the benefit of the doubt. I’ve actually no idea how I survived that time - especially with the kids and a demanding husband!
Anyway, he’s a nice guy and we get on well - he’s seen me often enough over the years, haha - and I feel bad for going against his advice/ NHS protocol just because of his professional pride, but I would still be in bed most of the time were it not for the lovely ladies on here.
Terrifying to think how sick with badly hypothyroidism I was, and how much longer being so unwell could’ve lasted. It had already been 15+ years of chronic illness as it is!
So I’m so glad you’re doing well and have the support and meds you need.
Hopefully too, it’ll make your medics think twice when they see someone else in your situation.
I am sorry you have had a fight on your hands. Your GP needs a slap lol. I just don't get these Professionals?? Thyroid conditions in theory should be so easy to look after especially if they listen to the patient concerned. If I was you, I would get a second opinion.
The reason I came to be on it in the first place, was because of a GP mishandling my thyroid condition. I have always been on meds as I was born with only a partial non working gland. Everything was fine until my early 30's no problems at all until I got a new GP and then my world fell apart health wise. I then started developing other problems and It was my gynecologist who told me that my thyroid was out of kilter and referred me to her colleague, who was a Endo and she got me back on track eventually and introduced me to the T3 meds. I have been on them for about 15/16 years now My current dose is 200 mcg of T4 thyroxine and 20 mcg of T3 Lithyronine.
It was two years ago that my present GP told me I needed to be referred to a Endo as it was only them that could prescribe T3 now because of the cost. So I reluctantly went and it was a disaster. She had already dismissed the medication before I got there, even though the evidence proved I needed it. Subsequent blood tests and scans she got me to have, confirmed it even more and as a result, I ended up reporting her for her conduct and complete disrespect. Never got me very far, but at least I made her think about her disgusting behaviour. She also implied that my husband was an enabler and that the money spent on the "useless" drug, could be spent on more worthy courses in the NHS! It was like a red rag to a bull! ha ha! The ironic thing is, if the previous GP had left well alone, I might not have had the problems I did develop and I might not have needed the T3 medication. But of course it is never their fault.
My eldest daughter is undergoing tests now for her thyroid and other conditions associated with it, so it will be interesting to see what happens there as she lives abroad.
I do hope you are able to get something sorted Abi, but I would definitely seek a second opinion. Your GP may be a nice man, but he is unlikely to feel the way we do and unlikely to have a thyroid condition. No one understands what it is like, until they walk in our shoes.
You take care and feel free to message me anytime.
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Update to last post: What does T4 do?
About to see endo
