pseudo-hypoparathyroidism

[MEIMOK]

Does anyone have this condition? I've had it since 1982. I had a very low Calcium level. Been taking 1mcg(1microgram) of One-Apha (alphacalcidol) ever since on prescription, to maintain my Calcium level. However, now after 40 years, I can't get any from any of my local pharmacies. It's made by Leo Laboratories. (pharmaceutical company) Has anyone else experienced difficulty in getting hold of this?

[meme]

Most people here suffer from thyroid problems not parathyroid ( a different gland/s). I would join a parathyroid forum and ask your question there . I know there are some groups on Facebook too. Your GP should be able to prescribe other calcium medication for you. Good luck.

[MEIMOK in reply to meme]

Many thanks for reply, I don't do much Facebook, but I'll persue it somehow. I've just found out from a helpful chap at Boots, that there's some sort of supply issue with One-Apha, but they may be able to get some for me tomorrow. Thanks again for your support.

[helvella Administrator Thyroid UK in reply to MEIMOK]

When someone reports that a particular medicine cannot be obtained by their pharmacy, I always suggest they consider contacting the pharmaceutical company/manufacturer directly.

We have had many occasions when the information given by the pharmacy to the member has not been accurate.

Examples with good outcomes have included:

• There were issues, but they are now, or will very shortly be, resolved;

• There is no issue and it is not clear why the pharmacy said there was;

• The product has a new branding - and is now only available under the new name;

• Give the pharmacist some information and they will be able to get the product.

And examples with bad outcomes:

• The product is no longer available;

• There is an issue that will not be resolved in the time required;

• The product has been recalled.

Quite often, members have found that the pharmaceutical company/manufacturer can and will advise how a pharmacy can obtain stock. At the worst, you can find out from an authoritative source that there really is an issue that will not be resolved. With pharmacies, you will almost always have at least one extra company - the distributor - between the pharmaceutical company/manufacturer and the pharmacy, allowing confusion to enter.

Chain pharmacies can make things more difficult by preventing individual pharmacists ordering directly from companies. Even then, they can ring the manufacturer and pass on information to others in their organisation.

Some pharmaceutical companies/manufacturers have been extremely helpful to members who have contacted them.

The company name is not always the same as the brand name. You can find the company name on the packaging (though in smaller letters and possibly on the back or bottom) and at the bottom of the Patient Information Leaflet. For example, Mercury Pharma is a brand name but the company is Advanz.

Contact details for most, possibly all, UK pharmaceutical companies/manufacturers can be found here:

medicines.org.uk/emc/browse...

Or the British National Formulary's list:

bnf.nice.org.uk/guidance/in...

Please do come back and let us know how you get on. It helps when members can see whether the shortage was just a very short-term problem, possibly due to a single pharmacy, or widespread and more protracted.

Neon Healthcare Ltd

Address

8 The Chase, John Tate Road, Foxholes Business Park, Hertford, Hertfordshire, SG13 7NN, UK

Telephone

[phone]

Medical Information e-mail

[e-mail]

Stock Availability

[e-mail]

WWW

neonhealthcare.com

Medical Information Direct Line

[phone]

Customer Care direct line

[phone]

Stock Availability

[phone]

medicines.org.uk/emc/produc...

[MEIMOK in reply to helvella]

Thanks for the info. As it happens, I phoned the manufacture yesterday, left a message, but have not heard a reply yet. Also phoned a distributor, no reply, on hold for ages. Got enough capsules for a week or so, so I'll be patient for the mo. Thanks.

[helvella Administrator Thyroid UK in reply to MEIMOK]

Very pleased to read that you did. But not so pleased to read how difficult it has been actually making meaningful contact.

I keep posting like this to encourage members to make contact. It might even help to make manufacturers understand that patients actually do care, do want to get involved. And that (sadly, too often) pharmacies don't always provide the needed support.

[meme]

You could always take Tums in an emergency !

[Spangle15]

Hi

I have low calcium so take a calcium supplement.