I was prescribed T3 only after seeing a private consultant, my prescription was for Thybon Henning brand. I have been fine on this brand. My gp has now agreed to fund T3 on nhs. Thybon Henning cannot be prescribed on the nhs, when i collected my prescription i have been given 5mg hard capsules, the brand is Roma.I take 5mg twice a day.
I have taken them for five days now and i am getting side effects from them where i had none on THenning.
I spoke to the pharmacist who said she has never had to suppy T3 in 5mg, only 10 mg. She said it could be because its a cheaper option. I know the person who does the prescriptions at the surgery checks the costs first before issuing the prescriptions.
Has anyone else had T3 brand Roma? Or had hard capsules instead of tablets
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Odinil
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helvella's medicines documents (UK and Rest of the World) can be found here:
helvella - Thyroid Hormone Medicines
helvella has created, and tries to maintain, documents containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world.
This link takes you to a page which has direct links to the documents from Dropbox and Google Drive, and QR codes to make it easy to access from phones.
The UK document contains up-to-date versions of the Summary Matrix for tablets, oral solutions and liothyronine available in the UK.
Thank you Helvella,Ive had years to get a brand of Levo that suits me. No thanks to my gp or pharmacies.
Im now on Zentiva Liquid Levo, but every prescription i never know if i will get it. I have found a very helpful pharmancy who has got Zentiva for me, so i am hoping it continues.
Only five days on Roma and ive got headaches, not so good vision, tension around my neck and spots more like lumps on my face, something i have never suffered with.
Im tempted to go back to getting T3 privately, i fought to get it prescribed on nhs but i cant have the same problem getting what suits me like ive had with Levo. I dont think my health or sanity will take it.
I rang the private pharmacy where i purchased my tablets, they told me that if i email them with my up to date blood tests they have a pharmacist who charges £30 for a private prescription and they will be able to supplyThybon Henning depending on blood tests results.
I may have to go down this route, it peeves me knowing how hard its been to get to the stage im at on nhs.
Also why is it always said to me by gp and different hospital consultants that T3 is good in the short term but not good for your heart long term. Could that be true or is it scaremongering!
I don’t tolerate Teva well it gives me constant headaches. However I have been on Accord for a couple of months now and I reckon that could be giving me an iffy tum.
I was good when it was Actavis but then Accord took Actavis over and although they were adamant that nothing had changed i was very unwell, if nothing had been changed as in the ingredients or filler why did i feel terrible. I think they had tweaked it. Why are we being lied to, its as though our health isnt important.
Regarding T3 damaging the heart long term I understand this to be a misunderstanding, that damage may occur if one’s T3 is far above the normal range and the real harm is done to the heart by having insufficient T3. I am open to correction.
Its never been explained to me fully by any gp or consultant, i wondered if there was any truth in it or was it said because i was asking for T3. The mere mention of T3 seems to put the fear of god into nhs gp's and endo's,Is it a funding issue or are they generally concerned its a health risk.
I just want to know the truth.
I have an appointment in two weeks with a cardiologist so i will be asking the question then
I think it’s mainly caused by the manufacturer from whom the NHS bought the T3 raising the price. Many CCGs do not allow GPs to prescribe T3 due to the cost. I understand an endo may be able to. Also there is a lack of knowledge and research into how T3 works and it’s benefits or possible harms. As professionals I think GPs naturally tend to go for the rule of thumb, approved route, in treating thyroid issues even though, in my opinion, this is based on outdated research. This forum is worth exploring for a better understanding.
If i get a sensible answer from the cardiogist in a couple of weeks time I will put it up on my post.My heart was fine up to a year ago but now i have two leaky heart valves.
Odinil. The NHS prescribes me Morningsude 5 mcg tablets. Oxfordshire hoping they will keep doing so. They did try to put me on capsules but because I said I needed to split them she said ok!!! A minefield
Its a nightmare isnt it!My gp prescribed 5mg because i take 5mg twice daily so i can see why she did that, i have no need to split, whether its the brand or the hard capsule and not tablet thats not agreeing with me i have no idea.
Are you ok on Morningside?
Trying to get through to change my prescription is stressful on its own, let alone trying to get the surgery's pharmacist to understand, phew!
You poor thing. I know what it’s like. I’m ok on T3 only Morningside. Sometimes tired and if stressed not so good. GP just does what my Thyroid Clinic says. Best of luck. Susie x
Thank you.When i suggested to my endocrine consultant maybe i would be better just taking T3 she said if you did that she would refuse to monitor me. I am monitored at Addensbrooke Hospital, my blood tests are done there which include T3, my gp or the lab will not test T3, ive stayed with the hospital as i had my thyroid removed due to cancer and feel safer being checked for that too.
To start of with I did, but after a while I started getting headaches. I was on 10 a day plus levo. I reduced to 5, seemed to help but then started getting headaches again. Stopped, they disappeared. But then I upped my levo to compensate, started getting headaches again, So not really sure if it's just thyroid level or what the hell is going on. My body just doesn't seem to like meds. Always had trouble.
Me too. Ive been sensitive to levo for years ever since my op to remove my thyroid. Been an uphill struggle trying to get the same brand everytime. I was on Actavis, did quite well on it until they were taken over by Accord. All downhill again. Its never ending and to be treated by professionals who really have no understanding about treating thyroid is a worry on its own let alone the medication saga. So are you on levo only now?
I also have no thyroid, had RAI. Yes on levo only at the moment. On Aristo as since having RAI I can't have meds with lactose. RAI seems to have damaged my liver, so Currently trying to heal that! So very limited to what I can take. Currently on 50mcg. But also battling peri menopause, so I'm not sure what causes what. It's very tiresome.
Yes i had RAI too, cancer of the thyoid.Theres so many if's and buts, its all very stressful.
I dont know if im lactose intolerant, i dont seem to have a problem with dairy, although i do get a bloated tummy.
I did wonder if some of my problem is peri menopausal. Cant imagine how difficult that would be convincing my gp i need HRT.
Im on 5ml of levo plus T3,
Thats what my endo reduced me to based on my TSH results.
I was on 6.5ml so not a hugh change. I was on that dosage without any T3 for a long time.
For many years i was told my blood test results for T3 were fine but when i went to see a private endo, he was surprised i was on such a low levo dosage and my T4 wasnt converting as well as i should have been and thats when he prescribed T3.
I tried so many different brands of levo, i also tried Aristo but couldnt get on with it.
I’m on TH T3 too. My endo said he could ask my GP to prescribe. For the reasons that you are struggling I declined and have stuck with the private endo. I’m happy to pay for Thybon but not so happy with the endo fee. He’s ok, but I still think he’s monitored and as my TSH is usually 0.01 he keeps repeating about “the patient knows the possible issues of a suppressed TSH”. My life was dreadful without some T3 added. It’s not amazing with, but at least I can do more than I used to.
I get bad heads when my levels are out too. If too low, then I get some pretty nasty migraines which don’t respond to my migraine meds. Just have to ride it out (in bed).
Was discussing this issue with my OH this afternoon. What else is there he asked me? I listed what I’m doing and the options. I can’t afford liquid levo. My doc won’t prescribe it till I do at least 3 months private. When I checked, it would cost £240/month. I can’t do that.
I hope you find answers for you and get back on track very soon ☺️🧁
Why are we always backed into a corner, all we want is to feel well. I only got liquid levo because my nhs endo wrote to my gp saying i had tried all brands of levo in tablet form and i couldnt tolerate them.Dont think my gp was happy about it had to have a meeting with the practice manager who put pressure on me questioning the reason why i needed liquid and of cause costs were brought up several times.
They have agreed to T3, nhs endo monitored me on a trail basis, not before getting confirmation that my gp would fund it at the end of the trail.
Its all very stressful trying to get heard. Its time, energy and determination oh and frustration!!!!
I've just spoken to Roseway Lab and they confirmed that they have an in house private pharmacist who will prescribe Thybon Henning for £30 plus the cost of the tablets, providing you email your latest blood test results. Just for future reference. Might work out less expensive for you.
I do wonder if their pharmacist will decline writing a prescription if my TSH is 0.01? I’d have to not take my T3 the day before for it to even think about getting to 0.02 and I’d feel rough too.
If I only have 1 zoom consultation with the endo per year it’s £140 and I get 3 prescriptions per year. So it’s only £50 more and I think my GP might freak if I get my T3 without an endo.
But thank you for that. I will certainly keep it in mind for the future.
Hi Odinil, just to say I'm on 10mcg Thybon Henning per day. I managed to have T3 prescribed by NHS but was given Morningside that made my joints flare up and made me feel unwell, so they replaced with Roma, still no good for me. I told the consultant who said with T3 it shouldn't make a difference in brand but it definitely made a huge difference to me. I'm relieved to be back on Thybon Henning now but sadly have to pay for it privately. Wishing you all the best and every success.
Has the consultant tried different brands? I was told my Imigran was the same as the generic sumatriptan by a doctor………..strange how the Imigran clears my migraines and the generic puts me into a monster migraine and make me vomit for 7 hours!
Another doc said (many years ago) “you have a curved uterus, I can straighten it - the book says it won’t hurt” 😱 “sorry” he said (he was a really nice person) “I didn’t think the book was right” 😭
These people who write “guidelines” only go by test results and numbers which are flawed, if only they could have our symptoms for a week they might understand a little more………..
Yes, I do now. I saw my consultant privately at first as the NHS waiting list was at least 5 months and I couldn't wait that long as I was quite unwell. He then prescribed Thybon Henning. After seeing him as an NHS consultant 5 months later surprisingly (I think most work privately and for NHS) and also trying Morningside and Roma on an NHS prescription unsuccessfully, I asked if he could provide a private prescription for Thybon H and he agreed. Hope all turns out well for you. Kindest regards.
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