slow release liothyronine: Like many people on... - Thyroid UK

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slow release liothyronine

Mollyfan profile image
36 Replies

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 profile image
Mollyfan
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36 Replies
helvella profile image
helvellaAdministrator

So far as I am aware, diogenes had no involvement with any actual medicines and their development.

Is it possible you are remembering this:

Extended Absorption of Liothyronine from Poly-Zinc-Liothyronine: Results from a Phase 1, Double-Blind, Randomized, and Controlled Study in Humans

Alexandra M Dumitrescu 1 , Erin C Hanlon 1 , Marilyn Arosemena 1 , Olga Duchon 1 , Matthew Ettleson 1 , Mihai Giurcanu 2 , Antonio C Bianco 1

pubmed.ncbi.nlm.nih.gov/346...

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!

joey82 profile image
joey82

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.

Mollyfan profile image
Mollyfan in reply tojoey82

Wow! That is a lot! 😳

I am only on 15 mcg a day so would hope it would be less. Thanks.

joey82 profile image
joey82 in reply toMollyfan

I don't know if they charge per mcg or just one charge to compound the dose weather it's 100mcg or 10mcg.

Mollyfan profile image
Mollyfan in reply tojoey82

I will ask them and report back. Thanks.

SlowDragon profile image
SlowDragonAdministrator in reply toMollyfan

How are you currently taking your 15mcg

As 3 x 5mcg ?

Mollyfan profile image
Mollyfan in reply toSlowDragon

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!

Thank you for you input ( as always!)

Mollyfan profile image
Mollyfan in reply toMollyfan

I also take mercury 125 in the mornings.

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.

Mollyfan profile image
Mollyfan in reply toMollyfan

Latest bloods!

Bloods
SlowDragon profile image
SlowDragonAdministrator in reply toMollyfan

So was test ideally before 9am, only drinking water between waking and test and last dose levothyroxine 24 hours before test

T3 ….day before test split T3 as 2 or 3 smaller doses spread through the day, with last 5mcg dose approximately 8-12 hours before test

If yes…..Ft4 and Ft3 results look a bit low

What are your most recent vitamin results

What vitamin supplements are you taking

As you have Hashimoto’s are you on gluten free and/or dairy free diet

Mollyfan profile image
Mollyfan in reply toSlowDragon

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!

Thanks.

Mollyfan profile image
Mollyfan in reply toSlowDragon

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.

SlowDragon profile image
SlowDragonAdministrator in reply toMollyfan

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)

Not sure about how well different brands cut

Mercury Pharma or Teva 20mcg

Sigma Pharma 5mcg tablets also available

Mollyfan profile image
Mollyfan in reply toSlowDragon

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.

joey82 profile image
joey82 in reply toMollyfan

A pill cutter should work well, I've been using one for months and they do a good job or cutting both Thybon and Tiromol.

Cut a days dose and store it in a small glass jar before you head out for the day. Pack it with cotton wool to stop then rattling around in the jar.

SlowDragon profile image
SlowDragonAdministrator in reply toMollyfan

Cut a 20mcg tablet up with craft scalpel night before

Put the 1/4’s in a daily pill dispenser so you can carry with you and take easily

Mollyfan profile image
Mollyfan in reply toSlowDragon

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!

SlowDragon profile image
SlowDragonAdministrator in reply toMollyfan

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

Mollyfan profile image
Mollyfan in reply toSlowDragon

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

SlowDragon profile image
SlowDragonAdministrator in reply toMollyfan

Yes I get my T3 on NHS

Just about to change from Morningside to Teva after next test

No been able to get Morningside from anywhere

As I am now dairy free (since summer 2022) decided it might be good idea to change to lactose free T3 anyway

also waiting to try Vencamil lactose free Levo in summer, once the 25mcg tablets become available ( I take 125mcg 4 days and 112.5mcg 3 days)

Gluten free since 2016

Mollyfan profile image
Mollyfan in reply toSlowDragon

Do you get your medication from your GP? I see the endo every 6 months so find it difficult to change much in between.

SlowDragon profile image
SlowDragonAdministrator in reply toMollyfan

Yes via GP

Not seen endocrinologist since pre COVID

Only seen GP face to face once since COVID too

Just moved house and area ….so new GP …..wondering how that will go

So far, so good …..repeat prescription signed off ok

shaws profile image
shawsAdministrator

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.

drlowe.com/thyroidscience/c...

Mollyfan profile image
Mollyfan in reply toshaws

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!

joey82 profile image
joey82 in reply toshaws

Thank you Shaws, interesting post. I know Dr John C Lowe also contributed to Paul Robinson's books.

How did you find out a single dose of T3 would work for you?

shaws profile image
shawsAdministrator in reply tojoey82

When all my symptoms resolved (immediately).

By following Dr Lowe's advice I've had no more clinical symptoms, I still remain on the same dose after several years.

joey82 profile image
joey82 in reply toshaws

Are you a hypo patient or do you have fibromyalgia?

Brightness14 profile image
Brightness14 in reply toshaws

Do you have Hashis or gut problems.

shaws profile image
shawsAdministrator in reply toBrightness14

Neither.

Brightness14 profile image
Brightness14 in reply toshaws

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.

Regenallotment profile image
RegenallotmentAmbassador

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. 🌱

Mollyfan profile image
Mollyfan

Thank you, that is really helpful. It is definitely an option! X

TaraJR profile image
TaraJR

The team at Cardiff university, including Prof Colin Dayan, are currently working on a slow release liothyronine trial.

Mollyfan Maybe that's where you're remembering something from?

Mollyfan profile image
Mollyfan

That maybe it! I hope it becomes a reality soon. 🤞

Brightness14 profile image
Brightness14

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.

shaws profile image
shawsAdministrator

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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