cost of meds wondering to switch to T3 and use Levo again ..advice/experiences please

[Starseed56]

hi lovely forum folks quick question (well quick as I can make it!)

My Erfa runs out in 28 days. I’ve contacted Roseway to make an appointment and have asked them this question … can I switch from ERFA to liothyronine (T3 spelling 🤔) through them, and take levothyroxine again from my GP. I await their reply.

Has anyone here made this switch? If so did it work ok and do you feel ok after the switch? I’m purely thinking this for budgetary reasons. That is I can get the Levo from my GP again and just pay for T3 til I finally get to see nhs endo (6-9 month wait!)

Or… am I best to just stay on ERFA?

Thanks 🙏💜

[Sparklingsunshine]

I changed from NDT, self sourced due to ongoing high costs and supply issue concerns obviously different for you if you're getting Erfa from a reputable source. I started self sourcing T3 in December.

I also get Levo from GP. I cant give details on the forum but I find the cost of Tiromel to be modest compared to NDT. I think some members use Roseway for Lio. I have no idea how much they charge though. I definitely feel better since adding T3.

[Starseed56 in reply to Sparklingsunshine]

Thank you I’m having a consult soon with Roseway. I’ll ask if I can switch from ERFA to lio and see what they say, it’s got to cost less than NDT but dunno if as good as it’s synthetic isn’t it, whereas NDT is more natural. Ideally i think we should all have access to T3 if Levo doesn’t work. The people who write NICE need shooting!

[Sparklingsunshine in reply to Starseed56]

Think that's a bit of a fallacy, NDT is derived from pig thyroid but its still highly processed and contains fillers etc. But like anything else if it suits you that is all that matters.

[Starseed56 in reply to Sparklingsunshine]

I did wonder that as I typed my last reply Sparklingsunshine so perhaps NDT and lio and Levo not so different. As I’ve put in a previous post I still don’t feel great. I don’t know if it takes a while for the body to recover after years of just being under replaced on T4 only despite my levels now being good, or if it’s due to fibromyalgia and/or very low ferritin. So hard to get the balance right! 💜

[Sparklingsunshine in reply to Starseed56]

It is and obviously if you have other conditions then they will be making you feel less than optimal. I've found that as soon as one symptom goes another arrives to take its place 😒. Its really hard to catch a break.

[KrazyKatMT70 in reply to Starseed56]

I also have fibromyalgia, CFS, and Hashimoto’s.

[Starseed56 in reply to KrazyKatMT70]

Like me that’s tough. 🤗

[KrazyKatMT70]

I’ve been on Thyroxine for 40 years. I think I tried the desiccated thyroid once.

Whatever works for you, would be the best. I’ve had to adjust my thyroid several times. Every year, unless there is significant changes , you should have your TSH done (thyroid stimulating hormone). If it’s in the normal range your levels are good. This is a very good article comparing the 2.

thyroid.org has a good comparison. I recently went slowly from .137mcg to .125mcg, to .100mcg. As I lost weight, I had to reduce my thyroid medicine.

The Doc tested my T3,T4, and TSH , until we got it right.

[MindfulMoments]

Hi. I am currently on Thyroid S and have been for years now. Since it seems to have been reformulated, I am not doing brilliant on it and having dreadful gastric issues. The downside of Thyroid S is the huge amount of nasty fillers and binders which the manufacturer refuses to disclose every ingredient. I have tried ERFA, and didn't feel any better, and had increasing headaches. I probably didn't allow enough time, but the cost put me off. I've also tried compounded but this is also very pricey and hard to tweek doses properly due to being a capsule. I was on levo only for several years but needed the t3. I've bought t3 and tried t3 monotherapy but felt very weird on it. I am wondering whether to try levo again with t3. I am fed up with dishing out tons of money and still not feeling brilliant and feeling bloaty and fatigued a lot of the time. Have you transitioned yet to levo/t3? If so, how are you feeling?

[Starseed56 in reply to MindfulMoments]

hi MindfulMoments I’m now taking Roseways compounded version and asked for no fillers. ..it’s marginally cheaper than ERFA (about £8 a month less) i take two grains. I only switched few days ago and not noticed any changes yet. Still think it’s potentially better than lio as it contains some natural ingredients NDT stands for natural desiccated thyroid as we know 😉 I’m still waiting for an endo appointment months and months and will ask about a lio trial but am not holding my breath.

Am trying to adjust my thinking and just pay the monthly cost! My levels weren’t good on just Levo that I do know and gene test indicates I may be a poor convertor.

Difficult decisions I know I have heard same about thyroid S. why not try Roseways compound with no fillers if it solves the gastric responses, it may be worth it? 💜

[MindfulMoments in reply to Starseed56]

Yes, I've got that too... 2 grains, 1 grain per capsule. Unfortunately, I didn't feel optimally medicated on it, and it's hard to tweek doses because you can't cut the tablets like the other NDT's. Every time you need to increase or decrease, you have to pay Roseway to refill the capsules, making it very pricey until you get the right dose. With NDT's you should only tweek doses by a quarter of a grain over several weeks to allow it to titrate properly in your system. I hope you get on well with it, it is certainly the healthiest option.

[Starseed56 in reply to MindfulMoments]

Morning, probably about as good as it gets I’m guessing. Hope you get yours sorted soon.💜

[MindfulMoments in reply to Starseed56]

You too! 😊