Finally after 4 years post total thyroidectomy I got my levels ‘optimal’ and I managed to get T3 prescribed on the NHS. I know both of those things are quite a feat!
Anyway I’ve just moved county, so signed up to a new GP and they’ve been in touch to say that Liothyronine is red listed on the drug formulary here so they cannot continue to prescribe it (it was amber listed where I lived previously).
I’m so worried as, like I say, it’s taken so long to get optimal (literally last month was the first time I was!), and the thought of going back to just Levo makes me sick! I work full time and have 2 babies and the last time I was on just Levo my resting heart rate was low 40’s 😔
I’ve tried just Levo on many different doses and I’ve tried NDT but Levo and T3 seems to be the winning option for me - I’ve had my reverse T3, saliva cortisol, blood cortisol and various hormones tested and my endo is happy that I have issues converting T4 > T3. I take supplements to help that conversion eg selenium but that still wasn’t enough.
My last results were
FT3 6.34 (range 3.1-6.8)
FT4 18.6 (range 12-22)
TSH <0.005 (range 0.27-4.2)
My last results on just Levo were
FT3 2.89 (range 3.1-6.8)
FT4 14.8 (range 12-22)
TSH 0.686 (range 0.27-4.2)
Has anyone been in this position?
Thanks for your input.
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mushumouse
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Well, if you've had a thyroidectomy I think the least they can do is give you a prescription that you found restores your health.
However, due to the cost of T3 that's why it was removed instantly from those who were prescribed it. Those who made this decision have no conscience at all about causing people immense worry, strain and disabling symptoms.
I'd see your local MP and protest about your health being destroyed but you might have to resource your own T3 and that is difficult too as you wont really know if it is authentic or not.
It is scandalous of those doctors who are supposed to be educated/knowledgeable about the function of the thyroid gland are not in the least capable of assisting people to recover their health. The fact they have recently removed the prescribing for the very original replacement (natural dessicated thyroid hormones) on which many people recovered (from 1892 onwards) through untruthful comments just goes to show that these people aren't in the least sympathetic and treating (mainly women) as if we're stupid.
I think its time they all had their thyroid glands removed - just to experience how the ordinary people suffer.
There are always 'exceptions' to any rules but it is because they wanted an excuse to withdraw T3 which is an enormous cost to the NHS and the rising cost was the perfect excuse. The NHS could easily source from elsewhere at a cost that isn't prohibitive.
These results show under medicated....what dose levothyroxine were you on?
Ft4 should be in top third of range ....typically 18-19
Bloods should be retested as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
Looking at previous posts....possibly you saw endo privately?
Can you see same endo on NHS
Private endocrinologist diagnosing clinicial need doesn’t enable access to T3 on NHS
Private prescription enables access to cheap T3 from EU. Would your endo give you prescription
I did used to see an endo privately and had my thyroid removed privately, but Bupa have said as my condition is chronic they won’t cover me anymore. I self paid to stay private (to keep getting my NDT when I was on that and then my T3) for about 18 months but I just can’t afford it anymore so I went over to the NHS in January this year.
I live in ‘Horsham and West Sussex CCG’ where T3 is red listed. It is my NHS endo who prescribes the T3 not my GP, and he’s based in Surrey where I used to live (I want to stay with him as he’s the only one who has really helped so far!). So it’s a bit confusing. He originally did tell me I would have to come off T3 to prove I need it, or I’d have to see him privately whenever I needed a prescription, but in the end, my GP just seemed to add it to my repeat prescription and it got filled! It almost seems like a sloppy mistake that worked in my favour.
It makes me so angry/scared that I will have to go back to just Levo, so I was curious if anybody else has done this before. How sick do I have to make myself to prove I need it?! I understand the NHS is very money conscious but surely being under medicated would lead to more costly health issues down the line!
My last results when I was just on Levo, that I mentioned before, was when I was on just 125 Levo. My previous (private) endo was concerned about my TSH (osteoporosis concern) so felt he couldn’t raise my dose, so I had to live with such a low FT4 and FT3. I felt absolutely horrendous and my new endo now has me on 150 Levo + 20 T3 which seems to be the right dose for me finally! His view, is that the low TSH isn’t a cause of osteoporosis.
So I could see him privately to get the T3, but that’s £150 for an appointment every 6 months and then the cost of the T3. It doesn’t sound that much but money is so tight because of Covid ☹️
No-one has to come off T3 to 'prove' they need it, so your prescribing endo is wrong about that. It's also a measure that would be completely unethical.
With a T3 prescription you aren't forced to pay for the T3 from a UK pharmacy. You could get it from various countries. I think a lot of people get it from Germany and they pay a lot less than is charged in the UK. Whether that situation will continue after Brexit I don't know. I've never had a prescription for T3 myself.
It is also possible to ask a pharmacy to supply Ace Cytomel from Netherlands. I believe it is considerably less expensive - which would be good for a private patient or for NHS funds. Also, available in 5, 12.5 and 25 microgram tablets which might be convenient.
A Red drug has to be approved by your NHS endocrinologist...which it is. Contact your NHS endo and request he write to your new GP outlining why you have clinical need for T3 and an individual funding request
The prescribing of liothyronine is only supported if initiated by, or considered appropriate following a review by, an NHS consultant endocrinologist. The withdrawal or adjustment of liothyronine treatment should also only be undertaken by, or with the oversight of, an NHS consultant endocrinologist. Where General Practitioners (GPs) are involved in such treatment changes this should be with NHS consultant endocrinologist support. This advice applies to both liothyronine monotherapy and combination therapy with levothyroxine.
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