Like many people on here I miss the wise opinion and knowledge of Diogenes enormously. I know he was working on the formulation of a slow release liothyronine which was in clinical trial.
Does anyone have an update on this? is it any closer?
In the meantime I am tempted to try sustained release compounded T3 from Roseway labs.
Has anyone tried this? Is it horrendously expensive? How did you find it?
A big thank you to all the kind and very well informed people on this site, especially those who give up their time. Where would we all be without you?
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Mollyfan
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The usual approaches to sustained release might work but will not achieve, say, 1 microgram an hour, 24 hours a day. They do still release at a varying rate. Some of the active ingredient can end up not being released. And these issues vary across people. Hence the dosing can only ever be guessed and then checked by testing.
A few members have reported that they use or have tried slow release liothyronine. I hope they reply!
My Dr has offered it to me but the cost is around £60 per week based on 70mcg a day so I have parked the idea for the time being. That would of been my starting dose, I could well need more than that. That was from Roseway as well.
Some people have issues with slow release T3 not being released in large enough amounts to enter the cells.
You would just have to try it I guess. One forum member replied to me a few weeks back when I posted a similar question and she swore by it.
I take 10 in the morning and 5 mid afternoon….. Roma capsules which are difficult to split. I did try 5 mcg 4 times a day when I was on thybon as I could break them but don’t think the consultant would prescribe that on the NHS as it would be twice the cost. I did have some other 20mcg tablets but they were tiny and very difficult to cut!
The problem I have is that I fall asleep at 8pm and wake at 4 am for the day. If I take the T3 too close together I get tachycardia so really want to even it out more. I may just go back to thybon.
Yes, test taken at 6am and previous T4 24 hours before, last T3 at 7pm.
My consultant initially reduced my T4 by 25 because my TSH was <0.02. I had some tachycardia so switched the T4 back to 125 and reduced T3 to 15 from 20. This has increased my TSH as requested but I don’t feel as good. Part of my aim is to try to even out T3 so my TSH is not so suppressed. He is very good and I would like to keep him happy!
sorry, missed the vitamin bit….. I take Thorne basic and vitamin D 3000U daily and am due to do levels with the next blood test. I am heterozygous for MTFHR.
I take 10 in the morning and 5 mid afternoon….. Roma capsules which are difficult to split. I did try 5 mcg 4 times a day when I was on thybon as I could break them but don’t think the consultant would prescribe that on the NHS as it would be twice the cost. I did have some other 20mcg tablets but they were tiny and very difficult to cut!
So your endocrinologist should be prescribing 3 x 5mcg Roma capsules
Though
A) Roma doesn’t suit many people
B) capsules are far more expensive than tablets
20mcg tablets
Morningside 20mcg cut into 1/4’s ok with sharp craft scalpel
(Personally that’s my preference 4 x 5mcg per day)
I will have a chat to roseway and see how awful the cost is and maybe go back to chopping tablets. It is difficult when I am out and about as they can crumble.
Do you mind me asking if your TSH is detectable with 4x5mcg T3? My buddy endo is very reasonable and wants TSH above 0.02 ( I think because that is the lowest his lab can detect) He was not happy with medichecks 0.014!
It was 0.01 on 1 x 10mcg and 2 x 5mcg …..but both Ft4 and Ft3 well within range
Waiting to see if TSH higher after 10 weeks on 4 x 5mcg …….definitely much smoother and I actually find timings less inconvenient……6.30am, 11.30am, 5.30pm, 11pm
I think we are clones! I am very lucky to get my T3 on the NHS and want to keep my lovely endo on side. I also want the thyroid effects to be smoother. I will report back after my chat with roseway xx
I take a once daily dose of T3. It resolved all symptoms I had and follow the advice of Dr John Lowe who was also a scientist. He was an Adviser to Thyroiduk
Unfortunately for us he had a bad fall that caused a brain bleed and his dying.
This is an excerpt from the link below:-
This systematic single case shows three noteworthy features of the patient: First, she was hypothyroid; second, she met the American College of Rheumatology criteria for fibromyalgia; and third, she no longer met those criteria and fully recovered when we switched her to T3 therapy after T4 and desiccated thyroid had failed to benefit her. It is worth emphasizing that the patient continued to meet the criteria for fibromyalgia when being treated with T4 (Synthroid) and then with desiccated thyroid (Armour). However, she quickly and dramatically recovered—no longer meeting the criteria for fibromyalgia—when we switched her treatment to plain T3 (Cytomel) with her daily dose well within the physiologic range.
I am on combination therapy and find that I get tachycardia if my T3/T4 ratio gets too high. I suppose we are all different which makes it all the more difficult!
Oh amazing, I have neither but was reluctant to try one dose. I have no thyroid so was wondering how long it lasted and if it was safe. One dose first thing would be great.
my Roseway Thybon Henning T3 is £60 for 3 month’s supply of 20mcg which I split myself. Initial consultation is £50 and repeat consultation is £30 they will do 1 repeat without consultation if all is well. 🌱
I was only reading a recent paper on it yesterday, it's very difficult. I am trying to take six lots of T3 daily and it's not easy. I did phone roseway some time ago and the price was very high. Pity the poor Rats that have to go through it.
I take T3 alone - a once daily dose. I follow the method that Dr Lowe advised and I've had no symptoms appear, except I've now got loss of hair i.e. Alopecia. but many people wont develop that.
I've been on one daily dose of T3 for a while now, when I awake, and from then on I feel well and have no unpleasant symptoms.
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