Real issues with brands: For many months now I... - Thyroid UK

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Real issues with brands

Jefner profile image
15 Replies

For many months now I have been having real issues trying to get my usual thyroid brands and along the way I have been given (and tried) other brands which caused a really severe reaction so I am very limited now on the brands I WILL try because I refuse to go through the hell I went through again. It hasn't helped with so many pharmacies closing down in my town which our local MP actually raised in the Houses of Parliament recently. I have phoned so many pharmacies to try and sort a new one that can provide me with my needs but most never pick up the phone and with my agoraphobia issues, I can't just go out and visit each one in person.

Every time I put in a script I have to phone my pharmacy to see what brands they are giving me and also remind them of the ones I can't have (despite it being on their system and brand mentioned on my scripts). It's a nightmare and has been for a year now.

My usual pharmacy has recently been taken over and they can't get my T3 in the Morningside brand so I am again trying to find one that provide all the brands I need. I finally managed to speak to Asda, explained what I needed and was informed that they should be able to get what I need

Funnily enough she informed me that she can get my T3 in the Accord brand (which I never knew before) which is the brand I always have for my Levo. As the Morningside brand seems so difficult to obtain I am wondering whether I should try the Accord brand because the fillers will obviously be the same as in the Levo?

I currently have:-

100 Levo - Accord

25 Levo - Wockhardt

T3 - Morningside

So 3 different brands and possibly trying the Accord in the T3 will cut it down to 2 brands making it easier to source?

Then the pain in the botty job of getting my GP to change names on my records again

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Jefner
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15 Replies
helvella profile image
helvellaAdministrator

There is much confusion about Accord liothyronine.

First, Accord have applied for and been granted a licence for their own liothyronine.

However, up till now, whenever anyone thought they were getting that product, they actually received another product. I *think* they got Morningside.

But what is impossible is keeping ahead of things. They could change and I wouldn't know until it becomes obvious - such as a member telling me/us!

Whatever you get, check the manufacturer and product licence number - which will be on the outside of the pack.

Details are in my UK thyroid hormones document.

helvella's medicines documents (UK and Rest of the World) can be found here:

helvella - Thyroid Hormone Medicines

helvella has created, and tries to maintain, documents containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world. There is now a specific world desiccated thyroid document.

I highly recommend viewing on a computer screen, or a decent sized tablet, rather than a phone. Even I find it less than satisfactory trying to view them on my phone.

helvella - Thyroid Hormone Medicines - UK

The UK document contains up-to-date versions of the Summary Matrixes for levothyroxine tablets, oral solutions and also liothyronine available in the UK. Includes descriptions of tablet markings which allow identification. Latest updates include all declared ingredients for all UK products and links to Patient Information Leaflets, etc.

helvella - World Desiccated Thyroid

Contains details of all known desiccated thyroid products.

helvella - Thyroid Hormone Medicines - RotW

Contains details of all levothyroxine, liothyronine and combination products - excluding desiccated thyroid products. Details available vary by country and manufacturer.

The link below takes you to a blog page which has direct links to the documents from Dropbox and QR codes to make it easy to access from phones. You will have to scroll down or up to find the link to the document you want.

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

Jefner profile image
Jefner in reply tohelvella

"First, Accord have applied for and been granted a licence for their own liothyronine. However, up till now, whenever anyone thought they were getting that product, they actually received another product. I *think* they got Morningside"

So are you saying the Accord Liothyroninine may have different fillers in than the Accord Levo? I am not really understanding what you mean by "getting Morningside"

helvella profile image
helvellaAdministrator in reply toJefner

There is absolutely NO connection between the excipients (fillers) in different products from one company. To take one example, Teva, only because they make both levothyroxine and liothyronine and I could grab the information quickly!

Further, because the big companies are as large as they are, their products could be manufactured in multiple factories, in multiple companies with excipients sourced from different suppliers even if they are theoretically "the same".

Teva levothyroxine

Teva including Hillcross 25

maize starch, mannitol (E421), microcrystalline cellulose, sodium citrate,

acacia and magnesium stearate

Teva liothyronine

Teva

microcrystalline cellulose, maize starch, pregelatinised starch, colloidal

anhydrous silica and magnesium stearate

If we look at Accord, which are less certain because we are not 100% clear what is being supplied (though looking at a pack will make it obvious).

Accord levothyroxine

Accord including Almus

lactose, magnesium stearate, maize starch, pregelatinised maize starch,

stearic acid

Accord liothyronine (if it is their OWN formulation).

Accord applied for a license for their own formulation of liothyronine. But, in reality, they simply got product from another company and had it packaged under their name. They have not tried to hide this because the manufacturer name and product license number will be on the outside of the packaging and on the Patient Information Leaflets. This is almost exactly what Almus and Hillcross do, and Northstar did, with levothyroxine. (Except Almus/Hillcross and Northstar do not hold their own licenses.)

Accord

pregelatinised maize starch, cellulose microcrystalline,

light magnesium oxide, sodium starch glycolate and

sodium stearyl fumarate

It is precisely because of all these issues that I maintain and post my medicines documents repeatedly. Whilst I might make some mistakes, I do try to ensure the information is fairly accessible. :-)

Anthea55 profile image
Anthea55

If you can't get your prescription filled locally it might be worth looking at the Thyroid UK list of pharmacies. Some of these dispense NHS as well as private prescriptions. Here's the link.

thyroiduk.org/get-support/t...

You'll have to ask what they do about costs of postage etc. but it's probably less than your petrol costs for travelling to a distant pharmacy.

sparkly profile image
sparkly

I can't remember if I've spoke before but worth getting in touch with Springfield pharmacy, Richmond as they might be able to source everything you need.I too can only take Morningside and they source it for me and post it out. They specialise in Thyroid hormones

crimple profile image
crimple in reply tosparkly

sparkly I use them ever since I couldn't get Sigma Pharma Lio from my local Boots. My surgery send the scrip to them electronically and I usually receive the meds by first class post within a couple of days. Many of the big pharmacy chains are not happy about subsidising the cost of meds as per NHS drugs tariff which I mentioned earlier this week. I am sure the drugs tariffs are causing lots of issues re availability/cost and not just for us thyroidies.

sparkly profile image
sparkly in reply tocrimple

Oh that's good to know that they send it directly to them. I'm picking mine up and posting to them as i do ring beforehand to check they can still get it. They had to email back this time as wasn't sure with wholesaler but did get it and received within a couple of days. Brilliant that they specialise in Thyroid meds, and it's just a normal high St pharmacy too.

Hope it continues as know it will boil down to costs and pharmacies can end up being out of pocket.

sparkly profile image
sparkly in reply tocrimple

Hi crimple, do you mind me asking what you get charged for delivery with Springfield? The charges have all varied the most expensive being over £16 and my last on £15.68.

I know the special delivery cost is £8.95. I'm wondering if I'm paying some or all the difference that the pharmacy could be losing out on supplying Morningside? 🤔 if this is the case, then could this be the reason why no other chemist will supply?

I'll pay the difference if it means I can get Morningside but I'm now shelling out £15/£16 a month just to get it as my script has sneakily been reduced from 3 months to 6 weeks 😡. Just wondering if you're experiencing the same?

crimple profile image
crimple in reply tosparkly

Hi sparkly, I have never had to pay for delivery!! I get Sigma Pharma T3 and it has to be that, 5mcgm tabs and no acacia powder fillers. In the last year I changed from Accord levo to Vencamil 100mcgm tabs, also no acacia. I know SP isn't cheap so I don't know how the pricing works out against what NHS pays and maybe the postage is recovered in their charges? Postage last time I checked was about £6 first class.

Definitely get your GP to reinstate you to 3 monthly scrips and explain about the charges or get them to specify your Morningside on the scrip as per McPammy.

sparkly profile image
sparkly in reply tocrimple

So you only pay £6 postage? I know mine Is £8.95 as it's printed on the package and thought the rest must be the extra cost Springfield are incurring so pass some or all on to me.My scripts are specified Morningside only brand but as i have 6 boxes ( was 12) no chemist can fill the script locally as they say they cannot specify to wholesaler what brand they need for customer. All down to costs i imagine but they don't admit that.

crimple profile image
crimple in reply tosparkly

sparkly As I said I have never paid for postage. Maybe it depends on the ICB whether or not you have to pay. Morningside seems to be commonly prescribed, where SP is rarely given, or so I understand because of the cost. Pharmacy pricing/NHS payments seem to be as clear as mud!

sparkly profile image
sparkly in reply tocrimple

So Springfield post your meds for free?

crimple profile image
crimple in reply tosparkly

Yes

sparkly profile image
sparkly in reply tocrimple

Wish I hadn't have asked now

I feel robbed 😂

McPammy profile image
McPammy

Have you considered speaking to the medication manger at your GP Surgery. I did this and they put my preferred brand on the prescriptions. I now always get the same brand as pharmacy has to source a named brand. You can even call manufacturers and they will deliver direct to your pharmacy rather than them saying we can only get what’s in stock with their stockist.

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