Liothyronine Trial: Hi everyone. I have finally... - Thyroid UK

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Liothyronine Trial

Kirstie10_0 profile image
24 Replies

Hi everyone.

I have finally after 7 years been given a trial for 2 months of Liothyronine by my GP on a private script. Cost me £260.60!! I have seen a link to a German pharmacy on the Thyroid UK website where you can send your script and they dispense them at a fraction of the price. My question is does anyone use this pharmacy and can advise on what I need to ask the GP to put on my next script if this trial is successful?? Thanks in advance x

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Kirstie10_0 profile image
Kirstie10_0
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24 Replies
SeasideSusie profile image
SeasideSusieRemembering

Prescription has to say

Liothyronine 20mcg 100 tablets

(not liothyronine sodium and 100 or multiples of 100 as they come in packs of 100)

Members have reported successfully using Bennewitz and parcelmed

Kirstie10_0 profile image
Kirstie10_0 in reply to SeasideSusie

Thank you :)

m7-cola profile image
m7-cola in reply to SeasideSusie

Yes. I use this service and it is most efficient and reliable.

Kirstie10_0 profile image
Kirstie10_0 in reply to m7-cola

Many Thanks

DotLeeds profile image
DotLeeds in reply to SeasideSusie

Bennewitz is registered without the German government as licensed to sell drugs over the internet. I found them very good. Have funded myself for just over a year and now my local CGC are reconsidering allowing Endocrinologists to prescribe on NHS.

SlowDragon profile image
SlowDragonAdministrator in reply to DotLeeds

This is an interesting development. Thybon Henning on NHS

Obviously Brexit is a possible problem looming for individuals trying to order

Would be nice if NHS were thinking of helping the hundreds of patients forced to get T3 on private prescription

SlowDragon profile image
SlowDragonAdministrator

Presumably as you seem to have been a member some time, you are aware vitamin levels need regular testing and supplementing

Do you have Hashimoto's? If so gluten is often an issue

And to start any T3 very slowly, at perhaps 5mcg only for first 2-3 weeks. If this goes ok adding 2nd 5mcg in afternoon. Wait 6-8 weeks and retesting FULL thyroid and vitamins before any futher increase

What, if anything has GP recommended?

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

If/when also on T3, make sure to take last dose 8-12 hours prior to test (moving time of last one of T3 if necessary)

Is this how you do your tests?

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Sybilla14 profile image
Sybilla14

Hi Kirstie10_0, may I please ask how you get a private prescription from your gp? Is it during your NHS surgery appointment or do you see a private GP to get this?

MaisieGray profile image
MaisieGray in reply to Sybilla14

Your NHS GP is perfectly free to issue you with a private prescription if he/she wishes. They cannot charge for the writing of the prescription, but obviously you will pay for it to be dispensed.

Sybilla14 profile image
Sybilla14 in reply to MaisieGray

Thank you MaisieGray. That’s good to know!

Kirstie10_0 profile image
Kirstie10_0 in reply to MaisieGray

Hi Sybilla 14. Apologies for the late reply. Yes it was my normal GP who agreed and issued the private prescription. I was lucky she is new and has a couple of patients who have done well on T3/T4 my previous GP would not even consider a trial even though I was prepared to pay.

SlowDragon profile image
SlowDragonAdministrator in reply to Kirstie10_0

On NHS, GP is unable to prescribe

Only an NHS endocrinologist can now initiate T3 trial.

Extremely unusual for a GP to agree to private prescription. If you get German T3, this in unlicensed in UK and therefore can put GP insurance in difficult position, hence their reluctance to prescribe

UK T3 is obviously unaffordable for most people on private prescription.

Uk T3 is currently £204 for 20mcg x 28 tablets (down from £258)

German T3 is 31 Euro for 20mcg x 100 tablets

thyroidtrust.org/media-cove...

medscape.com/viewarticle/90...

thetimes.co.uk/article/mill...

en.m.wikipedia.org/wiki/Vij...

theyworkforyou.com/search/?...

Kirstie10_0 profile image
Kirstie10_0 in reply to SlowDragon

Totally agree I have put this prescription cost on my credit acrd but cannot continue to pay for it long term. In one way I hope it works and another I hope it doesn't due to the cost implications ongoing. I know people buy from abroad but I am afraid to do so as cannot guarantee I am getting what I am paying for and they are not fake or packed full of fillers. I can only wait and see I guess

Helsan profile image
Helsan

My Gp prescribes Thybon Henning on nhs as it is cheaper and it continues what I was buying with private prescription online.

Kirstie10_0 profile image
Kirstie10_0 in reply to Helsan

Is your gp happy to prescribe it that way? I am worried when the trial ends my GP will refuse to change the wording of the prescription to enable me to buy it from abroad

Helsan profile image
Helsan in reply to Kirstie10_0

When buying abroad i was getting a private script from private endo. My Gp prescribes Thybon here on NHS so he gives 56 tablets. If I ever have it stopped and need to buy I would ask for private again written as 100 x 20mcg. GP can give private scripts but many won’t. Sorry if I confused you I was saying your Gp could give cheaper version of unlicensed if he is happy to.

Melrose2 profile image
Melrose2

If you get compounded triiodothyronine (liothyronine), sustained-release capsules, You will have much less liability to side effects.

Kirstie10_0 profile image
Kirstie10_0 in reply to Melrose2

Is this prescribed by a gp in the same way my tablets are?

SlowDragon profile image
SlowDragonAdministrator in reply to Melrose2

Many people don't seem get on with slow release T3

2 or 3 split doses per day is very effective for some of us

Kirstie10_0 profile image
Kirstie10_0 in reply to SlowDragon

I'm really sorry SlowDragon but what do u mean by 2 or 3 split doses. Is it as simple as splitting the T3 into different times from the T4. I'm sure I sound completely stupid but this is all very new and confusing to me. I'm just trying to find a way to feel better I guess like all the rest of us but tbh completely clueless despite lots of reading from here :)

SlowDragon profile image
SlowDragonAdministrator in reply to Kirstie10_0

Yes some of us find that the best way to take T3 is as 2 or 3 small doses per day

Eg if initially taking 10mcg, then 5mcg waking and 5mcg mid afternoon

This is typical introductory dose. Hold at this level. Retesting full Thyroid and vitamins 6-8 weeks later. Last dose of T3 should be 8-12 hours before blood test. Last dose of Levothyroxine 24 hours before blood test

(Make sure to stop any supplements that contain biotin a week before any blood tests)

If after 6-8 week blood test results show need slightly higher dose, then adding third 5mcg dose at bedtime. (Doses 8 hours apart)

Or alternatively trying 10mcg waking and 5mcg late afternoon/early evening (approx 12 hours later)

T3, like Levothyroxine, ideally should be on empty stomach and then nothing apart from water for at least an hour after

T3 cuts into 1/4's easily using sharp craft knife/scalpel

cassart.co.uk/craft/adhesiv...

I actually started with 2 x 1/8th tablet for 3-4 days, before increased to 2 x 1/4 tablet. (More info on my profile)

Vitamins usually need to be optimal first.

Kirstie10_0 profile image
Kirstie10_0 in reply to SlowDragon

Thank you for being so patient

Melrose2 profile image
Melrose2 in reply to SlowDragon

SlowRelease T3 capsules Should be taken as close to 4 AM as possible: try for between 3 and 5 AM.. Otherwise, take On waking. Do not eat for 30 – 60 minutes after taking them.

You won't feel any significant change if your dosage is inadequate for you: increase the dose slowly (say by 5 µg Every week) until your afternoon fatigue is gone.

When Your selected dose is reliably relieving your afternoon fatigue, get your blood tests done again – the TSH and T4 are of little importance – you need to check T3 and reverse T3..

If the T3 and reverse T3 are reported in different units (for instance, picomoles per litre and nanograms per decilitre), check the web for a conversion factor to Render them both in the same units. Then divide the T3 value by the reverse T3 value: if the product is >20, you're okay. If it is <20, thyroid balance is suboptimal.

You should take enough T3 to render a product of >24, Which will provide you with adequate "stress resistance".

When you begin taking T3, it will Seem at 1st that it is not helping: then as you titrate the dose upwards, you will reach a point at which T3 exceeds reverse T3 and you will then suddenly feel better.At that point, you will need a Tiny additional dose, to get you from >20, To >24.

NOTE: this Information derives from experience. It is not given as medical advice.Ask your Dr for his/her Opinion regarding this Information.

SlowDragon profile image
SlowDragonAdministrator in reply to Melrose2

Are you in the UK?

Wasn't aware of any UK slow release T3, especially on NHS

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