Refused liquid Levo by NHS Endo due to cost.

Hello all I have the NICE guidelines that state you can be prescribed liquid Levo if symptoms persist. I was refused liquid today by my Endo who said ‘it’ll have absolutely no effect on absorption and it won’t make any difference and it’s the cost’

Clearly, it can help absorption, but I’m sure I’ve seen someone quote guidelines on here regarding treating patients and for cost not to be the guiding factor etc or something like that. I could have dreamt this, of course 😂

I’m going to put a request to the Endo in writing to ask for a clarification as to his reasons for refusing my request in writing as I was under the understanding that this could be prescribed by him. I will quote the NICE guidelines, but wondered if this ‘imagined’ quotation re cost is out there. Does anyone know?

Thanks 🙏🦋

[SlowDragon Administrator]

New guidelines for GP if you find it difficult/impossible to change brands

gov.uk/drug-safety-update/l...

If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient. If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.

Liquid levothyroxine is approx £90-£160 per 100ml bottle

Depending on strength of dose

[Hidden in reply to SlowDragon]

Thank you SlowDragon 🦋

[McPammy]

That’s a real shame. At the very minimum your NHS Endo could trial you on liquid Levothyroxine. I’m on liquid Levothyroxine. I prefer the Wockhardt brand. I’ve tried a few. It costs £92 a bottle. I’m on 50mcg strength. I take 68mcg a day. What I also found beneficial is to split my dose 34mcg then another 34mcg some hours later. You could argue that you’d like to try splitting your dose. Liquid is so so much easier to manage your dose as you draw it into a syringe from the bottle. My dose should be 75mcg a day. I find it’s slightly too much. So I take 68mcg a day. I know that seems a stupid reduction but it really can make a difference overall throughout the week. I got my liquid Levothyroxine as it was suggested by my private endocrinologist to reduce excipients. My GP agreed straight away and I’ve been on it now for about 2.5 years now. I’m also now on Liothyronine T3 which was a struggle to get off the NHS. I went private and did a very successful 3 month trial first.

Regarding price and accessibility could you approach your GP on the matter for a 3 month trail of the liquid. My liquid Levothyroxine is more expensive than my Liothyronine T3 medication that the NHS is very reluctant to prescribe again down to cost. 2 bottles of liquid lasts me 4 weeks. So that’s £184 x13 times a year £2392 a year. I was quite taken aback when I realised how much they would spend on liquid Levothyroxine but not on T3 Liothyronine because it had been put on the NHS drop list due to price hikes. I’m not sure the cost of Liothyronine Mayne Pharma 5mcg I’m on but i doubt it’s more.

I do hope you can get a trial at the minimum they should do that for you.

I also believe I can manage my TSH better. I’ve only been over medicated twice in 19 blood tests. My TSH is virtually always just within range. This definitely keeps my Drs happy and continued prescribing T3 and T4 medications. My current (last week) TSH is 0.90(0.35-5.50). Both my T4 and T3 levels are midway in the ranges. I never change my T3 doses but can alter my Levo dose easy with liquid.

Write to your Endo as you suggest and also to your GP. Mention excipients and splitting your dose.

[Hidden in reply to McPammy]

That’s great McPammyI’m so glad it’s working for you and for your detailed reply.

I’ll write and copy my GP practice in and have a very good GP so it maybe she would do a trial for me for 3 months. Alternatively, following a disappointing first meet with my NHS Endo, I intend to go privately and if necessary will pay for it myself. As you say, so expensive, but I just want to get well and I’m willing to try anything. Great advice here thank you. My plan was to trial this first then see if I needed to add T3. It’s such a shame so many blocks in the way for us all.

I’ll keep you posted 👍 x

[McPammy in reply to Hidden]

I was disappointed with my NHS Endo appointments. It was going private only that really spurned things on. If you see the private only Endocrinologist I mentioned you’ll be surprised how quickly the NHS starts to respond. I hope things move quickly for you and that you’ll feel healthier soon.

[Hidden in reply to McPammy]

Oh McPammy I was (unsurprisingly) bitterly disappointed. I’ll hopefully have some positive news soon🤞I’ll pm when I do. Thank you, as always 🤗 hope all still good you’re end 😁

[McPammy in reply to Hidden]

I’m sorry you ended up being disappointed. I’m good thank you. I do believe private only is the best and fastest route to getting better. Some have self medicated out of many disappointments. Let me know how you are doing.

[Hidden in reply to McPammy]

I will do McP 🙏