Unpleasant surprise from repeat T3 script - Thyroid UK

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Unpleasant surprise from repeat T3 script

mickstability profile image
26 Replies

I've been progressing very very well since dumping T4 for T3, and gained grudging support from sceptical endos as I was so clearly improving, so I was somewhat devastated to hit an alarming wall 2 days ago - my first Hyper episode in 30 years. Last night involved palpitations, racing pulse, huge sweats ( complete change of bedding ) scrambling around for aspirin and plenty of time awake to wonder if my will was up to date. This morning I had an ECG and thorough cardio/pulmonary check -up at my superb GP's, bloods ( TSH free T4 free T3, thyroglobulin, plus (thanks for the insight, everybody) ferritin. B12 and cortisol ) What has changed ? Only one thing - I checked with Boots on a hunch, and until 2 days ago I was taking 60mcg MERCURY PHARMA liothyronine, on which I had no problems, and on collecting my repeat script, I was taking GOLDSHIELD liothyronine. I've reduced the dose to 10mcg of Goldshield at 3 per day until I can get more Mercury, and things appear normal. I can't draw any inference from this other than to recommend that you stipulate that each repeat script should come from the same supplier - Boots were fine with this - to avoid a scary and unpleasant episode. I reckon if I'd carried on I could have popped my clogs !

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26 Replies
Numberone1 profile image
Numberone1

I have just come back from holiday with a Canadian relative who works in the Pharmaceutical industry.

He commented on how well I was looking since we last met over a year ago and then proceeded to warn me never to change makes of Thyroxine etc, that it is most important that you stay with the same Company.

Makes me wonder what our doctors are telling us when the person who works with the tablets, is giving the information he did.

mickstability profile image
mickstability in reply toNumberone1

Thanks for this Numberone1 it bears out what a pharmacist has just told me.

Margo profile image
Margo in reply toNumberone1

With respect Numberone 1, the statement regarding never changing companies, doesn't make sense, with out an explanation what does that mean? I couldn't get any NHS T3, so used up my Mexican T3, which infact seems to suit me better. However, when that is used up by next week, I will go back to the NHS T3. Does that mean I will die a long and painful death?!!

mickstability profile image
mickstability in reply toMargo

I took it to mean 'stay in grade'; like when you move areas new labs tend to return slightly different results for blood work, and you re-establish your norms as necessary. You're not getting the point - what we're saying is there's no 'NHS T3', as pharmacists can choose from 17 different suppliers if they want, if Google is to be believed. Find out who made your Mexican T3 and ask them for that - why settle for second best?

RedApple profile image
RedAppleAdministrator in reply tomickstability

In the UK, there is only one manufacturer of T3, which is MercuryPharma (formerly Goldshield). This is the one and only licensed T3 product in the UK, and hence the only one that is given by your pharmacist to fulfil an NHS prescription.

Any other brand of T3 mentioned in google or elsewhere is not available on NHS prescription.

mickstability profile image
mickstability in reply toRedApple

Wow. All the more reason to push on to NDT.

mickstability profile image
mickstability in reply tomickstability

And I'll let you know if I get Cytomel offered again tomorrow like it was today.

RedApple profile image
RedAppleAdministrator in reply tomickstability

In the event of a problem with the UK licensed T3, pharmacists can offer to fulfil the NHS prescription with an imported brand at their discretion. This tends to be either a US product such as Cytomel or Paddock, or the German brand Henning Thybon.

nobodysdriving profile image
nobodysdriving in reply tomickstability

yes RedApple is right, only Amdipharm Liothyronine is licensed in the UK, so a GP/Endo will prescribe 'liothyronine' 20mcg so many times a day or so many tablets a day. However a GP/endo if they wish they can prescribe any other T3 too, but it will be 'unlicensed', they will have to write the 'brand' on the prescription like 20mcg Thybon Henning or Cynomel etc, by the way the mexican Cynomel is not importable in UK, I have tried with all suppliers! Also some GPs will prescribe 5mcg tablets, these will be Cytomel usually I believe.....extremely expensive ones usually only get given to those who need one a day or so, certainly not to me that I am on 200mcg Daily LOL

in reply tonobodysdriving

Hi NBD, I'm not sure what you mean about cynomel. We've been importing it for 11 years after first having it prescribed by Dr. Lowe. Just took delivery of another batch this week. Dr. Lowe believed it was T3 in its purest form. Jane x

nobodysdriving profile image
nobodysdriving in reply to

what I meant Janeb (if this is the mexican cynomel you mean) is that NO pharmacy importer in the UK can import it for you on an NHS or private prescription, you can import it yourself if you buy it off the internet of course, or if you take it in your bag from abroad. I have contacted all importers like IDIS etc who would import it for your pharmacy and none of them can get it. I was trying to get it on the NHS prescription for my GP to 'save money' as it is much cheaper than the UK one.

in reply tonobodysdriving

Thanks NBD. Now I understand. Ours have always been private purchases. Jane x x

moonbeam001 profile image
moonbeam001 in reply tonobodysdriving

Hi I am buying the Mexican brand cynomel, its not that expensive. £41 for 3 months supply plus £7 for postage. I cannot put the site on here but anyone interested can private message me :)

(edited by admin to protect privacy)

recovered7 profile image
recovered7 in reply toMargo

Hi Margo, i understand what you are saying, and it is confusing. I was on a medication for Anxiety, had taken the same brand for quite some time until suddenly it was in short supply and was given a Generic Brand, ( they say it's the same medication but made by a different pharmaceutical company, and cheaper ) to which i protested, but was told it was exactly the same. Well, i can tell you it certainly was not. Upon taking it i became extremely distressed and Anxiouse and had to phone my Dr, as i thought i was going to lose the plot. He was able to give me a sample from his supplies from the back room which was the same Brand, and i soon calmed down. Will never change Pharmaceutical companies again for anything as it isn;t alway's the same component, ( composition ) even though they say it is. Just thought this may help you. x

mickstability have you heard of the Yellow Card Scheme for just this reaction?

yellowcard.mhra.gov.uk/

and thyroiduk.org.uk/tuk/news_a...

Levothyroxine ,Goldshield became part of Mercury Pharma and we are assured that only the packaging changed.

I have not found Boots knowledgeable on the changes that take place.

I do not know if the packaging changed for liothyronine but it did for levothyroxine but I am assured that the product remains the same. :)??

I also heard that MercuryPharma and others will shortly be known as Amdipharm but I need to check this.

I have been upset and confused over the contradictory information given me and advise you to contact the Pharmaceutical Company(s) direct for your own proper and full understanding rather than Boots.

We can only hope what they tell us correct.

Worth keeping section of box with batch number and date of manufacture.

wyn

mickstability profile image
mickstability in reply to

Thankyou. T3 tends to come in a bottle round here, but as I'm the only one in this little town taking it, it's not hard to keep track as they ' order it in special'.

RedApple profile image
RedAppleAdministrator in reply to

Woolywyn, you are correct, MercuryPharma has now changed to Amidipharm Mercury.

amcolimited.com

I understand that the thyroid medications are still being branded as MercuryPharma though.

RedApple profile image
RedAppleAdministrator

Woolywyn has covered the ground well in her reply. Goldshield is the name that mercuryPharma used to be known as. The change of name happened about eighteen months ago, but the Goldshield name was still being used on the liothyronine pots until very recently.

Hence, the lio in the pot with the Goldshiled label is coming from the same company as the lio in the pot with Mercury Pharma label, and *in theory* the medication should be the same regardless of the name on the label.

However, if the tablets are from different production batches, this could very well be the cause of your problem. If you have the details of the batch numbers, that is what you can report by putting in a 'yellow card' here:

yellowcard.mhra.gov.uk

As Woolywyn says, don't assume the pharmacist knows what they're talking about here. My own experience and that of many, many others has proved that when it comes to thyroid hormone medications, pharmacists all too often have no understanding of which brand comes from which manufacturer. And indeed, pharmacists are still often heard to assert that 'they are all the same anyway' - which of course we all know is untrue.

mickstability profile image
mickstability in reply toRedApple

As it happens, I didn't know until today that they weren't all the same. As T3 is so much more 'volatile' than T4, I feel that if this assertion is/or could be proven it should be publicised. I have samples of both batches which I could have tested, if, and it's a big if, that's the only plausible explanation for what happened to me.

helvella profile image
helvellaAdministrator in reply tomickstability

Which assertion?

That Mercury Pharma Liothyronine is theoretically exactly the same as Goldshield Liothyronine?

I suggest you check the packaging of both. The original packaging will have the product license number.

I think you will find both Mercury Pharma and Goldshield have the number:

PL 10972/0033

The Summary of Product Characteristics for Mercury Pharma Liothyronine gives an alternative name of Tertroxin. That was the brand name under which the product was sold until Goldshield decided to market it as a generic liothyronine only.

RoloHibbs profile image
RoloHibbs in reply tohelvella

Hi there, yep, my NHS T3 is Mercury Pharma has the PL number you've quoted. If I have to pick up my T3 from Boots, they say that they have to, by law, 'decant' the tablets into a brown bottle with a child-proof lid. If I get them from my new GP's surgery (it's a dispensing surgery) they just leave them in the white plastic tubs. This tub has the PIL wrapped around the tub. I haven't read the PIL since I was first prescribed T3 in January. Now, I haven't noticed this before, (but it may have been on other batches - I can't be sure) it says "Marketing Authorisation Holder - Mercury Pharma, Addiscombe Road, etc., etc., then on an additional page it says Manufacturer - Custom Pharmaceuticals Ltd, Conway Rd, Hove, etc., ... I always thought that Mercury Pharma was the manufacturer - or have I got the wrong end of the stick and I's always been thus? Might just go and check what my old tubs have on them... Kxx

helvella profile image
helvellaAdministrator in reply toRoloHibbs

The whole need to identify things properly is ridiculously complicated. You are right that they are made by Custom Pharmaceuticals and, I think, always have been.

If you tell Boots that you cannot manage their childproof containers and there are no children around, I think they would have to give in. :-)

Rod

Stourie profile image
Stourie in reply tohelvella

They didn't give in to me so I went to a small private chemist and the service is first class.

Jo xx

vajra profile image
vajra

Despite official assurances here in ireland to the contrary Mick I went through about 18m of severe (work disrupting) problems (mostly hypo, but one episode of hyper) caused by what felt very like variable potency in Goldshield T3 20mcg product in late 2011 and 2012.

The issues resolved instantly on switching to the Ti-Tre T3 product at the same dosage that had worked for years previously. The Goldshield had been fine for several years before that - I'm not sure what if anything happened to upset the situation.

I don't unfortunately have batch numbers etc, and have no idea how widespread any issue might be.

There are clear differences in potency and subtleties of response in my experience between the T3 products anyway - as they manifest in my body anyway.

The Ti Tre product is significantly more potent than the recent Goldshield product, but more or less equivalent to the Goldshield prior to Autum 2011. Henning Thybon is for me marginally more potent again, and feels better too.

ian

Muffy profile image
Muffy

I didn't realise you could still get Goldshield T3! That was always far better for me.

mickstability profile image
mickstability

Yellow Card submitted on GP's advice. Thank you everyone!

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