Hi all - I have a prescription for T3 finally (cost me £1000 in appointments and tests but hey ho!)
It is for 2 months at 5 micro grams as a test. I am told it will cost £400 to get this from the local pharmacy. Is there a cheaper way to get this prescription? And then from then on what is the best way to get it if it works for me? Thanks all! 
Vicky, I don't want to be a killjoy, but two months at 5 mcg is really not going to do much at all. It's one of those set-you-up-to-fail trials that endos love. When it fails to help, they'll say 'there you are, I told you so, T3 doesn't make any difference' and take you off it.
Starting on 5 mcg is fine, but it should be increased by 5 mcg every two weeks, if it's going to do any good. So, you should be prepared for that.
I don't know anything about prescriptions in the UK, but I'm sure someone will come and advise you.
Right! Will get on to endo then!!! Thanks!
Hmm - checking the prescription its 5mcg twice a day for 2 months - does that sound better? Thanks for the advice!
That sounds better in a way. But, it would be better if you started on 5 mcg for a couple of weeks, and then go up to 10 mcg. The problem is if you need another increase after that.
Much better.
Generally recommended to start on just 5mcg early morning on waking.
Wait week or so before adding 2nd dose mid afternoon
Then retest bloods after 8 weeks.
Thanks!
Most patients get Thybon Henning from Germany. Comes in boxes of 100 tablets.
Prescription needs to say 100 x Liothyronine 20mcg
Cost is 31 Euro for 100 tablets plus 8 Euro p&p
It is perhaps possible to get 5mcg tablets. Hopefully someone can tell you more, otherwise get new prescription from your endocrinologist
Are your vitaminD, folate, ferritin and B12 levels optimal before adding T3.
What's your most recent TSH, FT4 and FT3 results and ranges
As you have Hashimoto's are you on strictly gluten free diet already?
Most patients need to increase dose of T3 slowly after week or so to 2 x 5mcg and then hold for 6-8 weeks before full blood test.
All other elements are fine and I have been gluten free for 3 years. Will chat to endo, thanks!
It's fairly easy to cut 20mcg into 1/4's using a small craft knife
Thybon Henning comes in 100mcg and 20mcg.
Vicky
The second half of this article on Thyroid UK's website tells you how to obtain T3 with a prescription.
thyroiduk.org.uk/tuk/treatm...
I think if you use the German pharmacies they only supply 20mcg tablets and the prescription has to be written to reflect that, hopefully someone else can help out there.
I would start on 5mcg twice daily, at breakfast and bedtime. I've found the bedtime dose most important as it helps with more restorative sleep. I think starting on 5mcg daily is too little, you want to be able to notice a difference.
As regards Thybon 20 Henning, this is liothyronine hydrochloride whereas other brands are liothyronine sodium, I have found the Thybon to be better. The point is make sure your doctor writes 'liothyronine' on the prescription and not 'liothyronine sodium', just in case it causes a problem. Most doctors are short of time and just write 'liothyronine'.
I have never heard that T3 comes in 2 different forms??? I’ll have to check the printed insert the next time I get mine. Can you elaborate a bit on why you prefer one over the other?
The Thybon seemed more gentle, almost like I was on no medication but felt well. This seems somewhat idea. I did try to find any information on how liothyronine is absorbed but couldn't find any. Perhaps it is absorbed more slowly or is more stable. The UK liothyronines AMCo and Teva I have found to be poor and lose potency after a while. I guess European liothyronine fails to get a UK license because they are unable to match the poor quality.
I have been taking T3 hormone it did nothing, I gained extra one kilo and I have hair loss, and sometimes I have panic attacks. My prescription is Cytomel. When I checked the side effects it said that the side effects I am suffering g is from T3. Anybody What do you think? Plus I got into a side that connects hypothyroidism with Wilson temperature do you know anything about it?
You'd be better off writing a brand new post rather than adding your question onto an existing thread.
People would then be more likely to notice it and respond.
Thats interesting - I will keep an eye out!
Hi Vicky, I’m probably the least experienced person on here at having success and I’m an odd case. Non the less would like to share my experience with T3 with you. I have been taking 5mcg of Cytomel brand T3 for 6 months. It made a significant improvement for me. I am still undertreated according to symptoms and labs. My problem is that my doc said it was ok to try adding another dose in the afternoon just half a tablet. But I couldn’t tollerate it. I’ve also tried adding 25mcg of T4 and it made me sick too. Am still trying to figure that out but in the meantime I am very grateful for the 5mcg of T3 that is enabling me to function. Without it I don’t even want to get out of bed and can’t think straight. With it I’m getting stuff done and waking up much easier just wish I had more energy. TSH still over 4. Waiting for results of genetic testing. Trying to be gentle with my adrenals drinking the adrenal cocktail ea am.
So while I am uber sensitive you may not be. We are all so unique. I believe I read on here that T3 is 3x the strength of T4.
Joy, you would likely need less T4, not more, to “make room” to add more T3.
5mcgs is a very small dose. I take 60mcgs a day and feel very well on it.
Fortunata, yes 5mcg T3 is a small dose, but that's all some people need to take in addition to their T4. Not everyone needs large doses of thyroid hormone.
Thanks for the info - its great to find out a range of experiences
It costs the NHS £250 a box of 28, which is why they don't like to prescribe it in the UK. My doctor told me its also because the making of it is not regulated enough, so some batches will have more or less of the drug in it. Don't know how true that is, but thats what he said. Its the drug companies that charge these extortionate money for drugs that are at fault! Is the same with certain cancer drugs. bnf.nice.org.uk/medicinal-f...
See Hansard 20th June, Branded Health service Medication costs regulations
2018. It may be on the thyroid uk website as well.
Agree with the others. I take Henning Thybon. I feel like a new person. Only been on it 2 weeks and already spring cleaning! I was told to take 1/4 tablet (20mcg) 3x a day. I had a migraine after one day of that dose. Now taking 1/4 twice a day as the other ladies explained. Will be getting bloods done in about 3 weeks. Listen to as many people as possible. They all have better advice than doctors who have not suffered with this condition. 🙂
Thanks so much - glad its working for you!
I have been on 20mcgs of Thybon Henning T3 since mid January andI have my life back! I got an endo to prescribe it. Then my surgery referred it to CCG. In the meantime I spoke to my usual GP who agreed to write the script. We discussed the cost and I told him I can source Thybon Henning from Germany, so aside from my first prescription, I now self-source and buy from Germany and my GP gives me free private prescriptions as I'm saving the NHS thousands (his words). I also did private genetic testing and am heterozygous for DIO2 gene (which pleased the endo, I suppose it means he can justify prescribing to his bosses). I pay 30.10 euros and 5 euros postage for 100 20mcg tablets. The NHS is being ripped off!
You are so right about the cost. My sister-in-law brought me back two packets from Greece. 60 liothyronine and it cost her 2.70 euros. Jo xx
Hi Rita,
I'm fairly new to this, and wonder how you managed to find a NHS GP & Endo to treat you? I have Hashimotos and am on 125mcg Levothyroxine (recently increased from 100mcg) and 10mcg T3 Cytomel (5mcg 2x a day) since 4 weeks or so. I had to go to a private GP to get tested properly and she increased my levo and gave me a T3 prescription. I bought the latter in the Netherlands (where I'm originally from). I can't really afford to pay £350 every time I see this private GP, so I was wondering how you broached the T3 prescription with your (NHS?) GP - I am more than willing to buy it myself in Germany as you do.
Thank you for your time! Ursula
Hi . I bought a year's supply of T3 from Greece online without any problems.<a web site> Always email them first to check they have it in stock.
Machupa,
When you signed up to this forum, you were asked to agree to the guidelines. Your response here breaks guideline 24 so has been edited to make it compliant.
24. Do not post advertisements, links or information of any sort whatsoever, on where or how to obtain UK prescription only medications without prescription. This includes online pharmacies who issue 'prescriptions' on the basis of the completion of a simple health questionnaire.
Greek T3 is no longer available.
I bought some last week
Hi Ursula, I was on standard Levo treatment for. Over 5 years and not getting better. Every time I saw an endo I gave a list of all my symptoms every time. I had a folder with all my symptoms, test results, and I typed up a report of every endo meeting so I had loads of evidence that Levo only wasn't working for me and that I had no quality of life! Last summer I saw a female endo who said I needed T3 and she then corrected herself and said there was no proven efficacy for it. I told her that was rubbish and that it was all due to cost! She agree but told me she had been banned by her bosses from prescribing abs that there was only 1 endo that could prescribe. She told me to specifically ask for him at me next appointment which ended up being November! I went through the same thing with him and eventually (I think because I was clued up on the drugs and also the consultation process that was going on at the time) he agreed to prescribe. I had to wait until the end of December to receive the letter confirming the could have it and the dosage. A trainee GP st the surgery sent the letter to the CCG for advice as to whether he could prescribe it. I found this out off patient access (the online GP records system). I wrote to my MP, the CCG and made an appointment to see my usual GP. He didn't want to prescribe and gave me all the usual guff about no proven efficacy. I told him I had paid National Insurance for 44 years and nor when I need it the most the NHS wasn't prepared to help me. He wrote my
Prescription! We've had several discussions since about the cost of T3 and eventually came to an arrangement for me to source from Germany. He gives me a free prescription. I took in the tabs and receipts to next appointment to prove to him that it's a legitimate source and that they are the correct tablets. I've done the same with the endo. I also did private blood tests which show I am heterozygous for DIO2 gene which means I may not be able to covert T4 to T3. Endo is very happy now because it means he can justify it to his bosses. It's been a very long and difficult process, but so worth it!!! Got e this helps.
Its mad what you have to go through isn't it? And yet because of my thyroid problems I have free prescriptions for everything else for life! But not for what I need.... the battle continues!
Ask your health provider to write a private prescription and source from Germany. I think they only do 20mcgs though so you'd have to split them into 4. 30.10 euros and 5 euro for 100 tablets.
That is sounding like my best option - wish me luck!
Hope all goes well for you. If you need the name of the pharmacy, just pm me.
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