Possible fake NDT?: This is a bold statement I... - Thyroid UK

Thyroid UK

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Possible fake NDT?

Jodypody profile image
27 Replies

This is a bold statement I know but I'm concerned. I had an issue like many others getting WP before Christmas from my usual pharmacy. Frustrated I phoned one of the other pharmacies recommended by Thyroid UK and he said he thought he could get a hold of WP from his supplier?? I was surprised as even New York based pharmacy were out. Anyhow said tablets arrived in an unbranded bottle with an attached info sheet and I'm struggling. I can fall asleep but wake bolt upright between 2/3 and can't get back off. My weight has increased despite having my normal strict regime and I generally feel low. I feel cold but my temperature is ok. Am I being paranoid to think I've been issued something other than WP?

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Jodypody
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27 Replies
Jazzw profile image
Jazzw

When you say “recommended by Thyroid UK”, do you actually mean recommended by members of this forum via PM? Looking at your previous post, I think you might mean the latter. Thyroid UK doesn’t recommend pharmacies for self sourcing thyroid hormone replacement.

It does sound as though you may have been sent duff goods, yes. That’s not to say they’re definitely fake, but they could be old stock.

Clutter profile image
Clutter in reply toJazzw

Jazzw,

There is a list of online pharmacies on TUK's website where members can obtain NDT with a prescription.

Jodypody profile image
Jodypody in reply toClutter

Yes that’s the one. I’ll see if I can dig out the accompanying instructions leaflet with the batch number potentially on it as it was dispensed into a standard brown bottle

Jazzw profile image
Jazzw in reply toClutter

I know. That’s why I said “self sourcing”. :)

Apologies if it appeared I was being a bit over-protective of Thyroid UK.

Clutter profile image
Clutter in reply toJazzw

Jazzw,

I wasn't sure you knew. Nothing to apologise for anyway :)

LouiseRoberts profile image
LouiseRoberts in reply toJazzw

To clarify - they are not 'recommended' - they are just pharmacies which may be able to help. We would be interested in knowing the name of the pharmacy please Jodypody Can you email enquiries@thyroiduk.org Thanks

Jodypody profile image
Jodypody in reply toLouiseRoberts

Hi

I’ll do that just to clear up there was no intention to doubt their recommendation it was to point out I didn’t get them from some random online source.

LouiseRoberts profile image
LouiseRoberts in reply toJodypody

No worries. It was more that I wanted to make it clear that we don't recommend. :)

Clutter profile image
Clutter

Jodypody,

You could contact RLC with the batch no. and expiry date and ask if they are genuine.

getrealthyroid.com/product-...

applesandoranges21 profile image
applesandoranges21 in reply toClutter

what is RLC Pardon my ignorance but what does RLC stand for?

Thanks

Clutter profile image
Clutter in reply toapplesandoranges21

Applesandoranges21,

RLC is the manufacturer of WP.

Jodypody profile image
Jodypody in reply toClutter

Hi clutter. I’ve checked and there’s no batch number or expiry date just the accompanying leaflet. That isn’t right surely?

Clutter profile image
Clutter in reply toJodypody

Jodypody,

Pharmacies *should* include them when they decant into other containers but often don't. Ring the pharmacy and ask for them. They should have the records.

Jodypody profile image
Jodypody in reply toClutter

Ok I’ll call them on Monday. It could only happen to me! Months of hard work in the gym and All undone I can hardly fit into my clothes 😆

Clutter profile image
Clutter in reply toJodypody

Jodypody,

Have you had thyroid function test recently?

Jodypody profile image
Jodypody in reply toClutter

I haven’t as I missed the last appointment. I increased myself at the beginning of the winter up to 3 grains. I’ve been on ndt for 3 years now and have moved up (self adjusting) from 2 grains

Clutter profile image
Clutter in reply toJodypody

Jodypody,

May be an idea to check TSH, FT4 and FT3 via thyroiduk.org.uk/tuk/testin... Could be dose is wrong rather than WP not effective.

lynmynott profile image
lynmynottPartnerThyroid UK in reply toJodypody

Can you ask them to check the expiry date and where it was stored?

Sounds suspicious, I do not think you are paranoid at all. You have grounds to feel suspicious. Clutter has given good advice so I would follow her advice actually.

Framboise profile image
Framboise

Hi, I phoned all the pharmacies on TUK's website list in November and none of them had any WP so I'm rather surprised about this, however it could be that someone along the line had some left over. There's one pharmacy which has caused me a bit of concern by altering prices and apparently ordering in only when someone sends him a prescription, rather than keeping things in stock, but even so it wouldn't be worth a pharmacist risking his livelihood to send out the wrong meds. Does it look the same as WP usually does i.e. with P and a number on one side and RLC on the other?

LouiseRoberts profile image
LouiseRoberts in reply toFramboise

Hi - would you be able to email enquiries@thyroiduk.org with details of which pharmacy please? Thanks

Framboise profile image
Framboise in reply toLouiseRoberts

Yes will do Louise.

Jodypody profile image
Jodypody

I’ll have a look later. It could just be that I need an increase again although I did increase to 3 grains at the beginning of winter. I dunno. I just got a strange gut feeling when he told me he could get them but I was so desperate not to switch to another brand and have that hassle of it not working. I’ve just taken another 1/4 grain so will see what happens sleep wise tonight. Wish me luck

cwill profile image
cwill

In my year of ordering WP from various sources, with prescription mainly, my tablets are always in sealed original tub and I always check use by date when they arrive and look at tablets for RLC. I have never received a brown bottle of mixed batches. I also trained my prescriber to write the prescription for multiples of 100 so that the bottles of WP don’t have to be split by the pharmacist to meet my order.

I think that novice NDT prescribers as mine was are keen to treat it like everything else they prescribe but we need a degree of flexibility in our dose and they need to be prepared for the reality of pill cutting. Not every pharmacy stocks all the grain variations even in times of plenty but some doctors don’t understand the reality of getting the prescription met.

BadHare profile image
BadHare

I took a photo of my two grain Wp. On one half is a P, & on the other half, same side is a 2. Are yours similarly marked.

helvella profile image
helvellaAdministrator in reply toBadHare

Good idea.

Photo of all dosages here:

pdr.net/full-prescribing-in...

Scroll down to find the picture.

BadHare profile image
BadHare in reply tohelvella

That's my last for this year! :-)

Good website!

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