I hope this updated post finds everyone well. I just wanted to post some news about how the Devon Group is doing. It's good news and bad really. Its great that we have reached this point with 101 members but sad to confirm my original thoughts that there are so many under-treated thyroid patients in Devon and surrounding areas, which includes the borders of Cornwall and Somerset. Unfortunately Ive no doubt there are many more?!
Whilst writing this I would ask anyone who has had their T3 reduced from 20mcg to 10mcg under the Exeter Endocrinology team or Devon CCG area, and are feeling worse on this reduction, to please pm me. The reason for this is because having reached this point we need as much 'hard' evidence as possible to present to the local endinocrology team at the RD and E in Exeter and to prove/explain why their rediculous maximum 10mcg T3 policy for all patients is completely unfair and wrong, and how they are keeping them undertreated and ill. I already have one person this has happened to very recently.
Sorry only just saw your message. Please feel free to join my group if you havent already. I presume you have thyroid issues or think you have? Ive had another 9 people join since my update. We need evidence to challenge the Exeter team with their rediculous 10mcg policy!
Hi there excited to learn there is group in Devon -I’m not on Facebook -do you meet up or have other ways of communicating-also astonished to hear that anyone has managed to get T3 in Exeter
In the last 12 months Devon processed 831,650 items of levothyroxine, at 6 items per person that is 138,608 people taking levothyroxine. In 2019 there were 795,012 people living in Devon. Nearly 1:6 of the population is taking levothyroxine. That's a lot more than 1:20 that we are usually told need levothyroxine.
In Feb 21 only 22 items of liothyronine were issued.
Whereas NICE NG145 said in the Final Draft of its E online file, that 5-10% do not do well on levothyroxine monotherapy, this looks like a gross under medicating of a hypothyroid population who may need liothyronine.
While this is a lot of averaging, it doesn't look good.
Hi Jane, very excited to see that there is a Devon group. I moved to Devon four years back and live about 20 miles from Exeter. I think the Sheep here get better care than Thyroid patients do! How do I join.
Im not at all surprised by your comments above, Devon has a policy of 10mcg T3 for every patient and its the clinical lead endocrinologist who is in charge but we need hard evidence that she is keeping patients ill because of this rediculous policy. Here is my link. Please feel free to pass onto anyone who is in similar situation!
Hi Jane, I've just requested to join the Devon group. I'm in the South Hams. Have had an under-active thyroid for 2 decades and still really limping long because of poor/non-existent treatment in Devon. Was finally referred to an endocrinologist in Exeter a few years back, but the letter sent to my GP and copied to me said in the last paragraph that he did not support the use of T3 and it would not be discussed and to let me know this in advance. I cancelled the appointment as that was the entire point.
I have used both PALs and Devon Healthwatch in my own fight with Devon CCG and my surgery's refusal to fund T3 twice, but sadly to no avail. They were not very helpful at all. I think some of it is due to the fact that they are not medical and do not understand complicated medical matters. I have used PALs for other situations but again they were not very helpful in my case.
Hi again Jane. I am just back from 5 days away seeing family and am now back on the case of trying to proceed with getting hold of ERFA. I have now been sent a copy of his letter to my GP requesting she changes my prescription of levo to 75 as he is going to add on 60 mg ERFA. However this is twice the quantity he told me initially, which was 30 mg daily plus 75 levo. So I am asking his sec to check. She wants to send the prescription to Springfield pharmacy and gave me their number and email but I cannot get them to respond, so not a good start. What do you suggest? How much does your German pharmacy charge, and how long does it take to get it? Or should I ask the forum for private messaging of suppliers?
I cant believe ERFRA would be cheaper than the German link I gave you. Springfield Pharmacy will be very expensive for sure. A couple of years ago I phoned them and they were charging something like £1600 for a month's supply of T3! It might be worth phoning them directly to ask how much they charge for ERFRA with a private script.
Do phone the secretary on Monday and ask how much the private script for ERFRA is going to cost you, plus the sost of the medication per year. Als ask her to check the phone number/contact details she gave you.
You could also email the German link I gave you to ask what they charge for their T3 with a private script.
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