Hi I need compounded meds due to allergies and MCAS.
I originally called Roseway Labs and got a quote for lio caps 10mcg at £77 for 100 caps. At their request, I asked Endo to write specifics on prescription for the formula needed, as Roseway need this.
Stupidly though, I didn't actually realise that I can't split the 10mcg caps dose as it's then going to be inaccurate for dosing at 5mcg or even 2.5mcg which I will need to do, espcially at the beginning. (Due to meds sensitivity).
So I asked Roseway for a price on liquid but they won't tell me. Instead I now have to get Endo to rewrite prescription stating what's needed re compounding again.. Then send and they'll give me a quote!
So it could be really costly. Does anyone take liquid 10mcg lio and can tell me how much they pay please?
Otherwise my only other option is still waiting for Endo and getting endo to write 5mcg caps instead of 10, which will cost me double the cost of £77! & so I'm hoping liquid isnt going to cost double, as I can't really afford that.
But it'll take weeks just to get an appt for endo to change it, he won't do these things without an appt. So more cost. And I still won't know the pricefrom Roseway until he does it!
I'm so ill without any T3 so if anyone can give any rough prices as to what they pay please, I would be so so grateful. Thanks very much for reading!
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It doesn’t list liquid lio, only powder for injectable. Which is ££££
I’ve always found Roseway to be very helpful, could you try again and ask for a price indication if you were to switch your current prescription to liquid? Maybe ask by email so they have time to go figure it out.
I split their capsules for months, admittedly only in half but it worked ok temporarily and saved me £££ a go.
Thankyou so much and for the link too. Wow the powder is extortionate! And that's saying something as even the caps aren't cheap lol.
When I first called roseway on phone they gave me a price of £77 for 10mcg caps. That was before I'd even got endo to state on prescription exactly what I need them to write.
But lately they've been less helpful, I have tried a couple of times via email but they can't say I literally just emailed again actually, and asked if they're able to tell me if 3 months liquid supply is under £100 to try and get a vague idea of it it'll be cheaper than 3 months of 2 x 5 mcg. Awaiting a reply. But I was pushing my luck I think tbh as they've not been budging so far.
Did you have the cellulose caps too? I've got that ready to go uploaded from Endo prescription, just have to post it to them. But when I first asked Roseway about it they said about it not being an exact dose that way (someone here I think said that somewhere too so it worried me abit).
But as I'm so poor I can't waste a prescription especially if I have to wait for weeks for endo to change it. Endo will then also tell GP to reduce my levo which I don't want so I'm trying to save up as much levo as I can too! (He hasn't yet as I had to delay starting as I had a low cortisol test and just passed my SST).
I guess I could try it in half like you did and hope for the best? Was it very difficult to split, how to spread it evenly etc? Did you have to get spare caps? Sorry for all the questions. Thanks very much for your help
I tapped them upright to shake the powder down into the smaller end of the capsule (it’s longer inside) then I pulled them apart and carefully tapped roughly half into a few tablespoons of water and drank it, put the capsule back together and kept it in a separate pill box to take later or next day. Powder turned blue! That was a surprise 🤣
Ah thanks! You commented on another of my posts a couple day's ago! 😊 yes their caps contain dyes even compounded ones with Roseway unless you state no dyes (which I/ endo have). Just abit worried how to balance the filler with T3 if i separate, but don't want to waste time or money getting another prescription either. I've emailed endo anyway incase he can alter and/or earliest he can see me so fingers crossed ! Thanks so much again
Thanks very much that's what I wanted to do really, just worried as I'm so sensitive and it'll very hard to know how much filler/T3 is in separated bit if you know what i mean? Is that likely please? I also don't want to waste time or money though waiting for Endo. Thankyou!
When I started T3, I built up gradually over 2 weeks. I had 10mg capsules, so I just split them roughly in half and it worked out fine.The 10mg from Roseway sounds like good value. I was on Roma capsules from the nhs, as they're lactose free and as I'm super sensitive to things. They cost £50 for 30!
Ah thanks were they caps or tablets please? As these are caps I'm worried it'll be hard to know exact dose of T3 as it could be more filler one dose and more T3 the next if makes sense? If I could just cut a tablet it'd be so much easier! Yes not bad value def. Thankyou very much!
The UK document contains up-to-date versions of the Summary Matrixes for levothyroxine tablets, oral solutions and liothyronine available in the UK. Includes injectables and descriptions of tablet markings which allow identification. Latest updates include all declared ingredients for all UK-licensed products and links to Patient Information Leaflets, Dictionary of Medicines and Devices (dm+d), British National Formulary, NHS Drug Tariff, etc. PLUS how to write prescriptions in Appendix F.
Also includes links for anti-thyroid medicines (but not product details).
Thankyou just replied to you on my otjrt post, it's also iron oxides (in roma) and other excipients I'm allergic to, not just sulphites. So compounding is safest for me personally. Thanks so much though
Yes it was capsules, so yeah it wouldn't have been exactly half but it was just for 7-10 days to enable me to build up gradually, so it didn't have to be exact. It was a bit fiddly, I tipped a bit out into one half of the capsule as I opened it and then tipped it into some water and then put the capsule back together with the remaining powder in it. I also kept an empty capsule so that I could make two capsules with half doses. The things you do! I hope that could work for your Roseway T3 powder.Before I was diagnosed as hypothyroid, I reacted to so many things, especially fillers in supplements and medications. I could only tolerate a few foods and water and nothing else. I've since learned that hypothyroidism and the menopause both trigger MCAS or histamine sensitivities. Anyway just wanted to let you know that things are a lot better now since I'm on thyroid and hormone treatment. I can tolerate more foods and more supplements and medications. I especially found projestorone helpful. So I hope it gets better for you soon.
Thanks so much for sharing. I've recently been told Roma 5mcg are different to 10 or 20, so they'd work for me! But I am still faced with probably needing endo to change it to 2 x 5mcg anyway, which I'd need to do for Roseway too. I was going to phone local independent to get pricesanyway just incase, but sounds much cheaper woth Roseway from what you've said!
Although if I do split them, I'll need to do that for months so unsure if that's safe? I'll be getting spare caps if I do and split contents between original cap and original one, prob won't mix in water. I would prefer to start on 2.5 though did you do that or just 5? I also want to eventually look at circadian rhythm dosing that Paul robinson discusses in his books, as I have some low cortisol issues too.
That's so good to hear your mcas / HI has improved, it gives me some hope thankyou. I've been living in mould for years which is def making things worse we're in midst of council complaint and compensation and being rehoused soon. Its all a mess but I suspect I had hashi hypo and Pernicious for decades tbh, before mould. (Dx thyroid 2 years ago, p a last year).
Suspect in perimenopause too but hard to tell as thyroid been so bad for years and was only dx due to gp hormone tests as haven't been able to concieve. Im now 45 but oeriodus been odd for 10 years! Fertility tests apparently quite good and good egg reserves 2 years ago? I looked at progesterone briefly abit but don't know much at all . I really appreciate your help thankyou and for your kind words too 🌸
Yes I might of started on a quarter capsule just to make sure I didn't react and then took a half daily. I ended up taking the 10mg in one dose as the split dose didn't help me, so it was easier for me. I did get it on the NHS. But I became really ill and they wouldn't give an increase or any help and dismissed my thyroid symptoms. So I ended up with an appt with a private menopause and Mcas doctor, she was amazing, so understanding of reacting to fillers and she could tell straight away that my thyroid wasn't working right & recommended a private thyroid doc. She also recommended Low dose Naltrexone (LDN) for sensitivities. So I'm now seeing a private thyroid doctor, I recommend doing this, they deal with the thyroid and hormones together,. My GP said she will try to prescribe what the private doctor suggests. I wish I'd gone private sooner.You're very welcome to direct message me if you want more info.I'm sorry to hear about the challenges you've faced, I hope things get better soon.
Hi Milburn13 thanks so much for your reply and help. Please can I ask, do you happen to know how much Roma 5mcg cost please? Although if your NHS 10mcg were £55 a month I may as well get Roseway 2 x 5mcg as thatll total £50pm anyway....and I'll have least chance of reacting to that anyway as im not completely sure of mag stearate.
I'd also be more inclined to get that rather than use my 10mcg which I understand dividing into quarters not a great idea sadly. I wonder if Roseway will let me use new 2x5mcg caps to begin then if ok use the 10mcg one I've already got haha. I doubt it bit would make life so much easier! I worry I'll spend £77 on 3m worth NOW, react and then have to find £150 on top for 3 months of 5mcg. So hard to know what's best
I do also need to see endo and double check its safe for T3 following my SST test for low cortisol, though he told me if its fine (which NHS have said it is) he said start T3 then anyway, he is also terrible re cortisol/pituitary. Abit better re thyroid but still wants me on lower levo so I'll have to delay him asking GP's to do that too. It's alot of hard work and waiting and I'm not sure what's more urgent / cost effective?
I do need to ask him for fertility and pituitary tests, but ive no idea if hed even say yes - if he says yes then Benenden cover should cover it for free as its my last appt I can get free either them then I'd have to pay endo, which is too expensive so then use roseway prescriber (its limited cover for diagnosis only with Benenden).
If not then I've at least not paid for a new 5mcg prescription, I doubt he'll just adjust the prescription via email as he wouldn't last time . It does mean I could be waiting for weeks until I see him so not sure what's best, just buy and start the 10mcg and hope there's no issue? Very unsure what on earth to do for the best really , particularly as we're trying to move and pack slowly and move out of mould, very stressful anyway but have to put certain things into storage and deal with inept council who are making it extra traumatising (in midst of complaint / negotiations).
On top of all this I had a very low cortisol test in Aug, hence needing to delay T3. But with different testing conditions to repeat cortisol in Sept and passed an SST test recently. NHS and private are bad for getting this diagnosed and I've been advised by adrenal insufficiency group to keep getting cortisol tested as my recent ones basically could have been false (the low one was a true result!). i def dont have addisons disease (primary adrenal insufficiency) but secondary is hard to diagnose and is quite dangerous untreated, and T3 lowers cortisol further so part of me wonders if delaying T3 prescription by a few weeks while I await a endp appt could end up being a safer option? Saying this, I'm so ill with thyroid and weight is piling on at alarming rate too!
I'd love to see a private thyroid dr but sadly I can't afford this atm, I'm so glad you found someone so good though, that's brilliant! they're like gold dust arent they?! I hope it's helping you so far?
Yes looked into LDN too, I'd be very interested to hear how you get on with it. A pm would be great thankyou! Perhaps if you're able to share your thyroid Dr that would be good for possible future reference maybe?
I'm so sorry for so much waffling I really struggle due to dyslexia and in overwhelm atm. If you've any suggestions how to figure any of this out it would be most welcomed! Ofc I totally understand if not too 😊
Thanks so much again for your support and so I'm glad things have been improving for you, it sounds as though its been really tough 🌸
Roma 5 and 20 microgram are £55 and 10 microgram are £65 - for 28. There are Roma's list prices so much more definite than the prices of many other medicines.
Ah thanks so much for that! Much appreciated. Hmm so if I get 5mcg roseway compounded it's going to be £154 for 3 months, so a little cheaper. Ifbi take them first then later get 10mcg a day split them (still unsure about that splitting tho) then it's £77 / 3 months so only about £26pm). Looks like roseway compund wins! I'm OK with cellulose which is the filler and hypromellose cap so I'll be safe. Thanks again 🤗
So far as I am aware, the only official liquid liothyronine product is IBSA Liotir in Italy. And that has mixed views. Contains ethanol (alcohol) so a problem for some people.
Price, I do not know. And unobtainable outside Italy, to the best of my knowledge. I rather suspect IBSA launched it as a sort of marketing trial product.
Thanks very much. So when I first spoke to Roseway they said they have a liquid suspension formula, which is olive oil and Silica gel I think? No alcohol or anything and defo allergy friendly for many people. Just won't give me the price without the prescription stating that, sadly
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I literally just emailed again actually, and asked if they're able to tell me if 3 months liquid supply is under £100 to try and get a vague idea of it it'll be cheaper than 3 months of 2 x 5 mcg. Awaiting a reply. But I was pushing my luck I think tbh as they've not been budging so far.
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