Had my meeting with a private endocrinologist last week and he was very understanding and helpful. Unfortunately I cannot be transfered to his NHS clinic because I live in a different area that comes under a different health boardHe has suggested a trial of T3 in combination with levo. He has written to my GP to request that they prescribe it as he feels that it could be highly beneficial for me and help to significantly alleviate my psychiatric symptoms. Long shot I know but here's hoping.
Had my bloods done at the hospital this morning and as long as my T3 is at the lower end of the range (which it has been when I've had private testing) I will be able to commence combination treatment.
Really looking forward to commencing treatment, to feel well for the first time in 20 + years and hoping for a good outcome from my GP.
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ltimmsie1
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His clinic is under a different health board to where I live and I saw him as a private patient. I have asked my GP on several occasions to transfer me to an NHS endocrinologist but they have refused. He will write me a private prescription when he has my blood test results back but he wrote to my GP in the hope that they would oversee the liothyronine prescription so that I wouldn't have to pay for it.
Treatment would include a drop in levo from 125mg to 100mg. Starting dose of liothyronine would be 2.5mg twice daily to increase to three times a day. Further blood test after 4-6 weeks and if symptoms haven't improved then increase liothyronine to 5mg.
Despite having Hashimotos current serum tsh level is 0.02mU/L (levo increased to 150mg in June to bring me in range)
Serum T4 is 20pmol/L
Free T3 was 3.7pmol/L in June and 4.1 pmol/L at the beginning of November.
My vitamin levels are all fairly good. I've been increasing my iron intake since June as it's in range but at the lower end.
Taking such a small dose as 2.5mcgs T3 is going to be expensive initially. I'm assuming he will prescribe 5mcg tablets which are very expensive.
5mcg doses are usually well tolerated so long as vitamins are good. You can then get Thybon Henning prescribed privately which is only around 60p per tablet. Cut pills into quarters with a pill cutter.
Have you ever had an acttive B12 test run? Its a more accurate reflection of your B12 status and yours is only just showing as good.
Folate should probably be 20 depending on reference range.
Yes he said I will have to cut tablets to get the correct dose. I'm not hopeful that my gp will agree to prescribe considering their reluctance to refer me so thank you for the medication recommendation. No I haven't had an active b12 test. Will my gp be able to run that or will I need to pay privately? The range for folate is >3.00ug/L. Do you think I should supplement or increase my folate rich foods? I also read about the importance of selenium. I take a vitamin d3 plus k2 oil supplement and I use a lumi light because I have SAD depression. Do you have any recommendations for a vitamin B complex?
I want to make sure I achieve optimum vitamin health conditions for taking the T3 medication as I'm pinning all my hopes on it working.
I believe vitd is too low as with those units it should be 200nmol/l. There is a wonderful chart comparing the different units but I'm not sure how to attach. I'll try
This is my vitamin d level in June before I started my supplement so it should be much higher now. My gp wouldn't redo my vitamin blood test when I asked a couple of weeks ago in preparation for my Endocrinologist appointment.
Yes, iron is low so I started supplementing with Spatone. I tolerated Spatone really well when I was pregnant and improved my iron levels fairly quickly.
It's very good to hear about an Endo recommending 2.5mcg doses to start with...first time I've seen that on this forum except in the forum advice itself. Hurrah! I currently get my T3 dose on the NHS from a friendly (and understanding GP) following private Endo request - but even they had to order 20mcg tablets as the 5mcg ones were so very, very pricey. Time to buy a craft scalpel knife as per Slow Dragon's good advice.
Very best of luck with your trial: even a small dose made a brilliant difference to my mental health - more more clarity and a reduction in anxiety. I did have to drop down the Levo after initial testing though so that's quite normal practice I believe. I hope your NHS practice will pay attention to your private Endo's request. Seems a bit of a lottery as to whether they will...but fingers crossed!
The Endocrinologist I saw was on the recommended list from Thyroid UK and the only one based in Wales. I have everything crossed hoping my GP practice will prescribe T3 for me.
I’ve just sent for my T3 to Roseway Labs on private prescription from private Endo. It’s £60 for pack of 100x20 mcg . I cut the tablets into 4 with pill cutter so lasts a fairly long time. Could that be an option for you?
Thank you for the advice. It is very much appreciated. Yes I heard that Roseway labs are good so if I don't win the NHS postcode lottery then I'll be paying them a visit.
I was going to suggest the same. I spend less on my Thybon Henning T3 than I do on my other supplements. Everything seems to help each other, but no one will take away my T3 without a big fight (I’m only 5’3” so they will be really scared 😂).
I hope you get your T3 very soon and it suits you and helps you to have better health
That's absolutely wonderful to hear! I'm on the waiting list to see a psychiatrist (12 -18 month wait!) for treatment resistant depression. You will understand just how much I'm hoping to see an improvement in my mental health symptons with a trial of liothyronine. If I have to pay for it I will but I would rather my GP prescribe it for me instead of trying to palm me off with antidepressants again.
Good news about your T3 trial. Just a note to say that NHS prescribing of T3 is not straightforward and, from posts on here, seems to vary by area.
Even though I am prescribed T3 by an NHS Endo, my GP Practise will not prescribe it. Fortunately, my NHS Endo expected this to happen and although he asked my GP, he told me not to worry if it was refused, as he would continue to monitor and prescribe for me, which has worked well for me.
It’s all to do with controlling spend, so if your GP cannot prescribe, you may have to pursue a local agreement with whichever ICB, or whoever controls your GP Provider budget,
Private prescriptions are not recognised on the NHS Treatment Pathway and it appears that each GP Practice has their own protocols for dealing with such requests. It might be worth checking your Practice website for any information on this. Beware - when I first asked my Practice, I was told it was ‘no problem’……only to get a call later to be told ‘we’re not allowed to prescribe that’.
This was a few years ago, and price of Lio has changed - you may be ok - but worth looking into in your area information if you can.
Thank you for your advice. I'm expecting they won't prescribe it and I'll have to pay but I think the Endocrinologist wants to try and see if they will agree. As my gp practice wouldn't refer me in the first place the odds aren't looking good.
Hi Itimmsie, I've been looking into methyl folate recently as I have been diagnosed with Psoriatic Arthritis and the treatment is low dose methotrexate which is a folate antagonist so I need to supplement folate.I note that methyl folate is required if you have any sort of problem converting folic acid into active methyl folate. (MTHFR genetic issue) Some hypothyroid folk have this issue. I mention this as methyl folate is also a therapy for resistant depression!
Thank you so much for this advice. My mother has Psoriatic Arthritis. On this side of the family almost everyone has an autoimmune condition so I fully suspect a genetic issue. Many thanks again for your help.
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