I have been on Armour thyroid for twenty years with great results! My endo allowed me to have it on an NHS prescription from 2014-previously I was one of Dr Skinner's patients. I thought I was safe, but have suddenly received a letter saying that I can no longer have it.I have followed your wonderful T3 campaign and will visit my GP with all the relevant information. She is very sympathetic and even waited until after Christmas to send me the letter. I know this is all down to cost saving by my CCG, which is Lambeth. Is there anything else I can do? Is it just a matter of returning to the endocrinologist and getting CCG approval? I thought I was already on a named patient basis.My main worry is that I have a suppressed TSH-even though the endocrinologist saw this result in 2014 and didn't seem too concerned by it
Armour thyroid refusal: I have been on Armour... - Thyroid UK
Armour thyroid refusal
Morning!
I may be wrong, and I know there are a lot of people receiving these letters about T3, but my understanding is, if you read the guidance they can’t stop the medication until you have been reviewed by an NHS endo and the endo will then decide if you can continue. However, this relates to T3. I’m not so sure about NDTs as they have been difficult to get on the NHS for a long time. I think I have read something about being stopped completely now and not even allowed on a named patient basis. Hopefully there is someone else on here with better knowledge than me who can also advise.
This is the T3 guidance and link
‘Patients currently prescribed liothyronine, or levothyroxine and liothyronine combination therapy, for hypothyroidism should be reviewed to initiate switching to levothyroxine monotherapy where clinically appropriate. Arrangements should be made for switching to be undertaken by a consultant NHS endocrinologist, or by a General Practitioner with consultant NHS endocrinologist support. Patients who are currently obtaining supplies via private prescription or self-funding should not be offered NHS prescribing unless they meet the criteria in this guidance.
The consultant endocrinologist must specifically define the reason if any patient currently taking liothyronine should not undergo a trial titration to levothyroxine monotherapy, and this must be communicated to the General Practitioner.’
sps.nhs.uk/wp-content/uploa...
You are going to have a battle on your hands I think, so arm yourself with lots of information. Remember to fight your corner on the basis of symptoms, not conversion (lots of endos seem to poo-poo conversion problems, so don’t give them the opportunity.) Ironically, one would of course lead to the other - but god forbid anyone should use any logic or common sense when treating a thyroid patient!) Don’t let them make you ill after doing well for so long.
#fightforyourthyroid 🤸🏿♀️
Hello there,
Thank you for that information.Two endocrinologists have approved my taking of liothyronine and armour. I have kept the letters they sent me.Even back in 1998 I was prescribed liothyronine, but did better on armour.It seems crazy that I have to go through all this again. The whole matter is painful because my Dad also had hypothyroidism, was not prescribed T3, but in hospital just before he died they gave him T3 because his test was on the base line, like mine was.They could not save him because it was too late.
I’m really really sorry to hear about your dad. That is very shocking and upsetting. We love our dads and we only get one, they are irreplaceable.
We know this stupid stupid policy and attitude to T3 makes people ill and keeps them ill when it doesn’t have to be that way. The whole approach to thyroid treatment flies in the face of the symptoms sufferers are endlessly presenting. It really is insanity. It clearly is also causing fatalities. T3 may be expensive, but what is the price of life? It’s unforgivable. 🤸🏿♀️
My Dad's treatment was indeed unforgivable.I did take him to see Dr Skinner but Dad was an old man and wouldn't take the Armour thyroid because it wasn't licensed and his GP didn't approve.He gave forty years of his life as a nurse to the NHS as well.
Your father was very Special to be a nurse and give 40 years of his life to help others . That was not easy . Medical Society was not kind to him in return . What a Shame .
He was very special.The problem is that there is so little understanding of hypothyroidism in this country.
Your right . I think it's a Universal problem as well . Dr's are not taught in Medical Academia how to dose with T3/NDT . All they know is Levo . But that's just a partial treatment . There are some Dr's who are caring and very compassionate and dedicated to patients well-being . There are very far and very few though .
Perhaps the key point for you, in that RMOC document, is "The prescribing of unlicensed liothyronine and thyroid extract products is not supported" ie privately sourced T3, and all NDTs, none of which are licensed in the UK. As with licensed T3, despite these guidelines, it is still a postcode lottery - some people are either keeping their T3 or more surprisingly, being newly prescribed it; whilst others are being refused it, or like me, having their longstanding licensed T3 withdrawn. So it's never possible to second guess if an appeal to have the decision overturned will succeed or not.
Thank you for your reply.Usually we go to the doctor because we are unwell and need to be made better. It looks as if I will be going there to make me become ill.It took me a long time to get better and in a good place and I don't want to undo the good wok.
I've just reread your email. How are you getting by without T3? Have you appealed? this is a great worry for you.
Thank you for asking. My health plummeted - at the same time as withdrawing all my T3, my GP reduced my Levo from 125 mcg to 75 mcg. My action was to first seek support from my MP (it was the least energy-draining option at that point) but her appeal to the CCG that my T3 be reinstated, was dismissed. Then I had a DIO2 test with Regenerus, which "fortunately" returned a positive homozygous result relating to rs225014; so I had it in writing that "the consequences are a decreased ability of the enzyme to generate the active T3 hormone; and is associated with insulin resistance and obesity". I then asked for a referral to a local Endo as in previous years I had seen them all over the country but never at my local hospital. The first Endo said it was absolutely no surprise I was feeling "bloody awful", and wrote to my GP asking him to seek approval of the CCG to reinstate my NHS T3 on a named-individual basis, and in the meantime to give me a private prescription, which he did. So I started taking German Thybon Henning after a year of being without any T3; and thank heavens because eventually the CCG bothered to reply, saying no! I then saw a different Endo who said with my DIO2 result I must be given NHS T3 again, and he wrote another letter to my GP. GP in turn wrote again to the CCG (pretty pathetic letters on both occasions, it has to be said) and as of this week, there's been no reply. So if I hadn't got the TH T3, I'd be bed-bound. So the trick is to appeal before your health is too badly affected. I think you're seeing the result of the same double whammy as T3 people, yes cost is an issue, but it's the antipathy or resistance to anything other than "gold standard" Levo that drives decision-makers to refuse NDT.
You really have been through the mill! it is unbelievable that with your D102 result you were still not allowed T3-despite the endo requesting its reinstatement.They do seem to be in total denial about the D102 test.I haven't taken it, but because both myself and my Dad had T3 on the baseline after several years on thyroxine, I think the problem lies there.I will talk to my GP about this.
Yes, I am going to take swift action because I couldn't bear to be so ill again.I am glad that you are sorting this out gradually.
Yes, I was several years on thyroxine and it didn't work. I found out about the late Dr Skinner all those years ago and he was wonderful! He helped so many people. I think I had had hashimotos for years before diagnosis-since my teens The doctors also found out that I was born with osteochondritis dissecans, which caused me terrible pain when I was a teenager and caused arthritis so bad that I had had two knee replacements before I was sixty.One of the doctors at the hospital said it was caused by hypothyroidism! It seems to be a family affliction.
In your position I would definitely think about buying my own.
I will probably need to do that in the end, which means finding a private doctor again.
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