Why can't we get them here over the c... - Pernicious Anaemi...

Pernicious Anaemia Society

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Why can't we get them here over the counter?

Cb1963 profile image
13 Replies

UK B12 injections,so with the numerous people with long term suffering and who know our own bodies and every increasing symptoms that includes myself, more pins and needles, tingling tongue, tinnitus now,which I never had,and a docile doctor looking in my ears saying that they are free from wax! Er I knew that!!! and yet I keep on banging the same drum after 3 months saying that the injections aren't lasting long enough, besides getting the muscle twitching, and occasionally having to be put onto folic acid for a deep chest rumbling sensation,man I feel like my gp is killing me,why can't a British manufacturer get round the loop holes and supply direct to uk clients? The trade and the livelihood of people would be immense,its a crazy situation that we speak to our doctor's with an English dialect, and yet order online and you get more or less anything,I feel the world has gone mad,and all the time my symptoms are getting worse, and then trying to explain to the doctor is like being stuck on the M25,is it me,or does anyone else feel the same? Sorry the moan/rant but my feet are on fire lol.

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Cb1963 profile image
Cb1963
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13 Replies
JanD236 profile image
JanD236

At least nowadays we have the option to educate ourselves and to order B12 for injection online. I dread to think what my life would be like if I had had PA pre internet days!

wedgewood profile image
wedgewood

Obtaining B12 ampoules over the counter in the U..K. is something that the PAS Is trying to achieve . But it’s complicated . The only loop hole there is , is to sell it in the U.K. as a slimming or beauty aid . This is complete nonsense of course . The people who do this are charlatans, and charge charlatan’s prices .

But as Cb1963 says we have to be glad ,for the time being , that it’s reasonably easy and cheap to get safe supplies of B12 ampoules from German online pharmacies , and the wherewithal with which to inject it ,from the U.K.

Cb1963 profile image
Cb1963 in reply towedgewood

Yep it seems to me the only reason they want to make It complicated is so that someone can make a shed load of money out of it,and yet if you want to order far more serious dangerous items like cleaning products which then breaks down into ghl into the blood the government seem powerless to stop these products being delivered,we are only trying to help alleviate our problems and hopefully trying to stop them getting worse ,and also means less appointments at the gp and visits for the nurse for the injections, when will common sense prevail,and then you wonder why the NHS has so much waste and expenses going through the roof,are they scared we are putting them out of a job,has a petition ever been organised do you know? I fail to see why those of us who are suffering and continue to get more problems are just given a 3 monthly injection and sent away, and continually tell our doctor's the problems are getting worse are disregarded are kept on the minimum requirements, and the failure of this practice or ignorance is perhaps something that maybe doctor's just don't understand, anyone else had this problem?

wedgewood profile image
wedgewood in reply toCb1963

The doctors maintain that they have to follow the guidelines they are given regarding B12 injections . The new guidelines state that that you can have 2monthly injections now ,even without neurological symptoms .The PAS has submitted petitions to have B12 injections available OTC . , but no results . It needs to be backed by research , of which there is very little . If you are a member of PAS. you can watch the videos of the conference in December . You can then hear a bit about the research that is going on now . “Big Pharma” has no interest in researching P.A. . They want to sell patentable drugs to the NHS . not an unpatentable , cheap vitamin injection ,

Yes it must cost the NHS millions in treating untreated/undertreated B12 deficiencies . People end up in wheelchairs and all the expenses both human and monetary that that entails .

But we are lucky to have our PAS . Not even the mighty USA seems to have such a society . Many members are from USA . Unless you can afford an expensive medical insurance company there , you have bad treatment for B12 deficiency/ PA . I won’t bore you with how I got to treat my P.A. , Suffice to say that my GP sent me on my way with very low B12 , 140;. completely numb feet , exhaustion , breathlessness erratic heartbeats etc etc .. , and in the end I had to go to a private GP to get my diagnosis . That’s nothing unusual . But I hope that I will see improvement in the treatment before I pop my clogs . A really bad thing has happened as a result . My trust in doctors has gone completely . I keep away from them now .

Cb1963 profile image
Cb1963 in reply towedgewood

When you mention new guidelines when did this come into force? and is this only in England? As I live in Scotland, my doctor just looks at the screen from previous blood results and says that the levels were within range, but it's my symptoms that have got worse, the pins and needles are going further up my from just my feet up to my knees, I can't keep repeating myself enough!!! I swear im losing the will to live with this doctor, sorry to keep asking numerous questions ,thank for your replies.

wedgewood profile image
wedgewood in reply toCb1963

Don’t apologise for asking anything . I can imagine how you feel . The new guide lines came in near the beginning of last year 2019 . Some people could give you the exact reference . But if you look through “pinned posts “ on the right -hand side , you should be able to find them . Otherwise ,I know that fbirder has the exact references, that you could print out and show to your GP. You should be able to get 2 monthly with your symptoms . There is also a statement in the guide lines that B12 blood serum results are not necessary once injections have begun , because they will always be within range ever after . symptoms are the most important thing . You need to show that to your GP too . The GPs ignorance is terrible Also they don’t bother to keep themselves informed of the latest guidelines and knowledge of the subject . Best wishes to you , and success .

Cb1963 profile image
Cb1963 in reply towedgewood

Many thanks

in reply toCb1963

I live in Scotland, in Fife, and I get them 8 weekly no problem

Cb1963 profile image
Cb1963 in reply to

Thanks for that, I need to have a word and try and rattle the doctors cage a bit more,just keep on getting more symptoms and he keeps on ignoring it,cannot weigh this doctor up,ignorance is not understanding this condition is crazy, and yet it was me in the first place who begged to get the ball rolling for the blood tests in the first place, it makes me wonder how many other B12 'zombies' are walking around undiagnosed! I had to tell them because of numerous problems with my stomach over the years, and being on omeprazole, and having countless general anesthetics which all cause B12 issues put me in a high category as well as all the symptoms I had ,eventually I got my blood test, and yes definitely needed the injections,its just a battle of the wills,and it's like they don't want to admit any mistakes, thanks for your reply.

in reply toCb1963

I hope you get sorted. I have a very sympathetic GP and she’s even asked to use my case (I am like you not a typical b12 patient) with the wider practice. When first diagnosed 2 years ago with B12 deficiency and neurological issues, she gave me injections every other day for several weeks. She also understands the links between digestion and b12 and subsequently diagnosed me with IDA and exocrine pancreatic insufficiency. A lot of people complain about their GPs but mine has been excellent. She thinks I should be ok with 8 weekly injections but I SI weekly and that’s the only point where we agree to disagree!

Mannequin18 profile image
Mannequin18

It's not a moan, you are 100% right. It makes me think it is deliberate.

I have exactly the same issues, as I know many on here do too. And I don't know the answer, except to get my B12 from Germany. I wish us all good luck.

Sleepybunny profile image
Sleepybunny

Hi,

B12 Deficiency Info website has a link to a petition to get B12 injections over the counter.

change.org/p/ian-hudson-ple...

I've written a very detailed reply with lots of B12 info in another forum thread. There may be something useful in it for you eg links to B12 books, UK B12 documents, B12 websites etc.

healthunlocked.com/pasoc/po...

fbirder profile image
fbirder in reply toSleepybunny

Unfortunately that petition isn't very up to date. It is addressed to three people -

Ian Hudson, who was the Chief Executive of the MHRA until last year.

Jeremy Hunt, the famous spoonerism and no longer minister of health.

Sarah Wollaston who was, until last month, an MP.

None of those three to whom the petition is addressed are still in any position of influence.

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