Do I risk taking T3 medication?: I had a double... - Thyroid UK

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Do I risk taking T3 medication?

Scolbyn profile image
23 Replies

I had a double thyroidectomy 15 years ago and I have managed quite well on an optimal dose of 112mcg of Mercury Pharma levothyroxine per day.

After the second operation I was told that the crucial test results would now be T3 and T4 instead of T4 and TSH . I was advised that I would probably feel well if the T4 and T3 were towards the top end of the range. Unfortunately my local health authority has never allowed me to test for T3 so I have been reliant on my T4 results and I have felt well if my T4 result has been above 17 in a range of 12 - 22 pmol/L.

Over the last 12 months or so, my T4 has risen above the top figure in the range but I find that I need to keep taking the same 112 mcg dose to function adequately. I thought maybe I am not converting T4 to T3 very well so after studying your website I arranged a private test with Monitor My Health. The TSH and T4 results were very similar to my nhs results of the previous week but the private test included testing for T3.

Monitor my Health

09.05.23

TSH 0.05 (0.27 - 4.2mU/L)

FT4 25 (12 - 22 pmol/L)

FT3 4.0 (3.1. - 6.8 pmol/L)

I think I may benefit from taking a small amount of T3 medication and reducing my T4 dose but I am nervous of doing this due to an experience I had in early 2012. On this occasion I was given Teva tablets (100mcg) and after only one tablet I had a bad reaction with a racing and irregular heart beat. A locum pharmacist had recently read an article in a pharmaceutical magazine and he immediately changed the Teva tablets back to my usual brand. He explained that Teva had been ordered to temporarily suspend its production of levothyroxine due to an irregularity in the formula. Tablets which had already been dispatched were not recalled in case this led to a supply shortage and the vast majority of people taking these tablets would not be badly affected. It was his belief that the thyroxine tablets in question contained a combination of T4 and T3 medication. I made a mental note never to have anything to do with either Teva or T3 medication and that is why I am frightened of going down the T3 route now.

Does anyone know if the addition of T3 ingredients is the true reason for the suspension of Teva levothyroxine production sometime around late 2011/early 2012 or was there a different cause?

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23 Replies
TiggerMe profile image
TiggerMe

The person who might know about Teva...  helvella

jimh111 profile image
jimh111

I would reduce your levothyroxine and add a little liothyronine. A high fT4 carries increased cancer and cardiac risks, albeit not high risks.

Scolbyn profile image
Scolbyn in reply to jimh111

Now that I have been reassured by Helvella’s response, I agree that it would be worth reducing levothyroxine and adding a little liothyronine if I can manage to obtain any.

SeasideSusie profile image
SeasideSusieRemembering

Scolbyn

TSH 0.05 (0.27 - 4.2mU/L)

FT4 25 (12 - 22 pmol/L)

FT3 4.0 (3.1. - 6.8 pmol/L)

When did you take your last dose of Levo before this test? We advise 24 hours between last dose and test to avoid any false high or false low FT4 result. If you did leave 24 hours then your conversion is poor.

Are your key nutrients at optimal levels, have they been tested:

Vit D: recommended to be 100-150nmol/L

B12: top of range for Total B12, for Active B12 it's suggested to be 100 plus

Folate: at least half way through range

Ferritin: some experts say the optimal ferritin level for thyroid function is 90-110ug/L

Optimal nutrient levels are needed for thyroid hormone to work properly and good conversion to take place.

Scolbyn profile image
Scolbyn in reply to SeasideSusie

My test was taken 24 hours after my last dose of levothyroxine. I haven’t got my other results to hand but I remember that the B12 and ferritin levels were ok. I have never had a Vit D test so that is what I shall do next. Thank you for your help.

helvella profile image
helvellaAdministratorThyroid UK

The 2012 Teva issue was not as you have described.

My interpretation is that Teva made an unapproved change to an ingredient (a dextrin compound). The effect of that was the tablets failed to make available all the levothyroxine they contained. So a tablet that might once have actually delivered, say, 80 micrograms, would in future only deliver 60 micrograms with the other 20 micrograms remaining attached to the dextrin.

(We don't absorb 100% of any levothyroxine tablets. 80% is sometimes suggested as a sensible amount we might absorb.)

It had absolutely nothing to do with T3.

The effect was those taking the product were under-dosed. And that included me!

There was no immediate recall at least partly because there had been a near-simultaneous issue with Goldshield levothyroxine (now Advanz/Mercury Pharma).

Teva withdrew ALL their levothyroxine (although only one of the three dosages was formally subject to recall).

And there was no Teva levothyroxine in the UK for around four whole years.

The product they did eventually launch (in 2016, I think) was an entirely different formulation. Made in different factories. And two additional dosages were available (12.5 and 75 micrograms).

The MHRA report on the issue is available here:

Levothyroxine tablet products: a review of clinical and quality considerations

gov.uk/government/publicati...

ALL levothyroxine tablets are theoretically allowed to contain up to 1% liothyronine. This is because absolute purity cannot be achieved in the first place, and levothyroxine is expected to very slowly breakdown over time with liothyronine being one of the possible products of that breakdown.

In reality, I suspect few levothyroxine tablets ever have that much liothyronine, whatever has happened to them!

Scolbyn profile image
Scolbyn in reply to helvella

Thank you so much for this information. It is very reassuring.

helvella profile image
helvellaAdministratorThyroid UK in reply to Scolbyn

helvella - Levothyroxine Brands History

An overview of the various levothyroxine tablets which have been available in the UK.

helvella.blogspot.com/p/hel...

SlowDragon profile image
SlowDragonAdministrator

Which brand of levothyroxine do you normally get

Scolbyn profile image
Scolbyn in reply to SlowDragon

The only brand that I can tolerate well is Mercury Pharma which used to be Goldshield. My independent pharmacist has always gone to great lengths to obtain the right brand so I have been very fortunate

SlowDragon profile image
SlowDragonAdministrator in reply to Scolbyn

Goldshield was by far the best wasn’t it

Like you I was forced on to Mercury Pharma after Goldshield was discontinued …..and have brilliant independent pharmacy that always ensures they have Mercury Pharma brand for about a dozen of their regular thyroid patients

Your GP could/should specify brand on your prescription

How GP should specify brand on prescription
Scolbyn profile image
Scolbyn in reply to SlowDragon

Yes my GP now specifies Mercury Pharma which is great - except when there are shortages of that particular brand

pennyannie profile image
pennyannie

Hello Scolbyn and welcome to the forum ;

A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg+ a measure of T4 at around 100 mcg. - with T3 said to be around 4 times more powerful than T4 :

T4 is inert and basically a storage hormone that needs to be converted by your body into T3 the active hormone that runs all your bodily functions, from your physical, mental, emotional, psychological and spiritual wellbeing through to your inner central heating system and your metabolism.

It is essential that you are dosed and monitored on your Free T3 and Free T4 readings and we generally feel best when our T4 is in the top quadrant of its range as this should - in theory - convert to a decent level of T3 at around a 1/4 ratio T3/T4.

Conversion of T4 into T3 can be compromised by non optimal levels of core strength vitamins and minerals - ferritin, folate, B12 and vitamin D and conversion can also be down regulated by any physiological stress ( emotional or physical ) depression, dieting and ageing.

Some people can get by on T4 only medication.

Some people find that at some point in time T4 seems to stop working as well as it once did and by adding in a little T3 - likely to replace that lost when they lost their thyroid - their health and well being are restored.

Some people can't tolerate T4 and need to take T3 - Liothyronine - only.

Whilst others find their health restored better taking Natural Desiccated Thyroid which contains all the same known hormones as that of the human gland and derived from pig thyroid glands, dried and ground down into tablets referred to as grains.

Currently your doctor can only prescribe T4 ( and the obligatory anti depressants !! ) and you will need a referral to an NHS endocrinologist to be assessed if needing an additional thyroid treatment option and sadly it is a bit of a post code lottery with financial restraint rather than medical need being the overriding decision is some areas of the country.

Thyroid UK - the charity who support this forum - thyroiduk.org - do hold a list of patient to patient recommended thyroid specialists both NHS and private - so might be best to get referred to someone who we know is supportive - just email admin at Thyroid UK and a copy of the iist will be sent out to you.

Scolbyn profile image
Scolbyn in reply to pennyannie

Thank you pennyannie. This is very useful information. I have looked at the list of supportive endocrinologists and there are none in my area but I am prepared to travel further afield even if it means a private appointment.

pennyannie profile image
pennyannie in reply to Scolbyn

Ok then - good - remember that many specialist are now offering video consults - so in reality distance doesn't have to be an issue - just your preference if preferring a face to face.

Might be worth trying your NHS area first - do you know if your ICB / CCG area are supportive and are write new prescriptions for T3 Liothyronine ?

You can look at your area ans surgery as to how active they are in prescribing T3 but this doesn't highlight new patients - but your surgery should know the answer anyway.

openprescribing.net - then go into analyse - and enter Liothyronine as the drug

Scolbyn profile image
Scolbyn in reply to pennyannie

Thank you for the link pennyannie. The funding for my area wasn’t as bad as I feared so it will be worth a try.

Onlymeandyou profile image
Onlymeandyou in reply to pennyannie

it is so good to have all this explained in such a simple and clear way, even for those of us who have been in the thyroid minefield for years, a quick refresher is a really helpful reminder of what we are aiming for and why, thank you

pennyannie profile image
pennyannie in reply to Onlymeandyou

Just a pity it's easier said than done !!

SilverSavvy profile image
SilverSavvy

I am in exactly your position..wondering whether to add in T3.

I went to see a private Endo recommended by my GP recently and was told that NHS guidance is now that everyone who is thought to need T3 should go on a 3-month trial period to see if they benefit.

Because T3 is not prescribed in my area, I have been told that I would have to pay for that T3 (and all the subsequent trial blood tests/Endo appts.) and even if I then got transferred over to the NHS from private, there would be no guarantee that my health authority would give me T3. And if they did, I'd have to go through all the trial again in NHS.

So basically, I have been told to go away and figure out whether I can afford to pay for it (and private Endo appts) for the rest of my life.

Pretty normal, I guess if the postcode lottery doesn't go your way? :(

Scolbyn profile image
Scolbyn in reply to SilverSavvy

Thank you for getting in touch SilverSavvy. It sounds like quite a journey with no guarantee that it will end well. I plan to start locally and take it from there but I can see that it may take some time to go down the different avenues. I really hope that things work out for you.

SilverSavvy profile image
SilverSavvy in reply to Scolbyn

Thank you. You too. I'd be very interested to hear how you get on with obtaining it in your area and, when you do, whether you benefit from being on it. My Endo said it only works for 10% of his patients but for those who do, they say it's absolutely lifechanging.

Wouldn't that be nice? Good luck!

Scolbyn profile image
Scolbyn in reply to SilverSavvy

Thank you SilverSavvy. I thought it would be beneficial for the majority of people taking it, but if it is such a small percentage I can understand why there is a trial period to see the results. I would be happy with a trial period if I could get it in the first place!

SilverSavvy profile image
SilverSavvy in reply to Scolbyn

Yes, that's why I am having to go private for the trial, like so very many others :(

I'm guessing many private Endo's will do that if asked. If you can afford it. Lots of advice on this forum for both private Endo's and obtaining T3 yourself. I personally would not wish to simply buy it and try out myself (tempting as that might be) because of the other stories I have read about it not being attached to your medical record/prescription if you ended up in hospital in a crisis. I'd rather be monitored by SOMEONE throughout.

I hope your care commissioning body let's you go ahead on NHS.

I personally have never heard of any other condition where your GP has clinical evidence of need but has no right to prescribe to alleviate the illness. My GP is fully onside....but hands are tied. Absolute scandal. Especially when one thinks of how much is spent/wasted on meds that are NOT clinically necessary.

I'm sure many wise heads on this forum are shaking in wry acknowledgement of my newbie frustration. Still not over it yet :)

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