Attitudes to SI in countries where b1... - Pernicious Anaemi...

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Attitudes to SI in countries where b12 is available OTC

MorningMist profile image
38 Replies

What are people’s experience of doctors’ approach to SI in Europe? For those that have lived in Europe for any length of time,

I wonder if the reaction of gps in UK would differ if we could also buy it OTC? Obviously that would involve a significant change of mindset to regard b12 and all of us who feel we are deficient in it.

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MorningMist profile image
MorningMist
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38 Replies
wedgewood profile image
wedgewood

I’ve no personal experience, but I remember a post from a member living in Germany who told us that they had no trouble at all in obtaining enough B12 injections from their doctor to keep all symptoms of B12 deficiency at bay . Was surprised to hear what a dreadful experience it is for U.K. P.A. patients Perhaps that member will send your post and retell their experience.

Marz profile image
Marz

I lived in Crete for 15 years and was able to buy 3 B12 phials and syringes for less than 5 euro OTC.... no prescription required.

Here in the UK I buy on-line to save the hassle with the GP's. No PA - only B12D due to extensive surgery....🙃

Midnight_Voice profile image
Midnight_Voice

Can’t speak for Europe, but when we bought some hydroxy OTC in Australia, the cheerful pharmacist (no prescription needed, but only the pharmacist could dispense the ampoules) asked if we needed any needles and syringes?

So very relaxed down under, but still with due safeguards.

Litatamon profile image
Litatamon

We are OTC here in Canada. I told my doctor that I was self-injecting. She supported it. My sister told her doctor she was self-injecting (via me injecting her) and her doctor went cuckoo for cocoa pops. Too bad, so sad on that.

The irony is I never lost my shots at my doctor's office during the pandemic. My sister's office stopped them. And then when they went to reinstate they decided PA patients only. Which is ridiculous and filled with a lack of common sense for so many reasons, starting with the PA test is not reliable for negative. And ending with all absorption-led deficiency patients still need their shots.

As for the pharmacist and b12 vials, simply ask. Done. Sold to you. Can buy needles and syringes as well.

If one wants individual ampoules, those can be ordered through a naturopath.

Pickle500 profile image
Pickle500 in reply to Litatamon

May I ask you something? I wondered if Canada and Australia went OTC because of the distances to travel? I was watching a documentary about Shania Twain (sorry!) and understood she grew up in Timmins Ontario and had to travel to the Deerhurst Estate in Hunstville every night to perform, before Nashville came calling with a record deal.

Timmins to Hunstville would take like 5 hours to drive, right? So Shania (or Eilleen then) would've had a 10 hour drive every day!

So, would that extent to medical provision, is my question. Do Canadians and Australians get OTC because travelling to their nearest medical centre --for some not for everyone--is just not viable unless you're in a city like Toronto, Vancouver, Montreal/Quebec City? If you're in the middle of the provinces, you surely can't go every day for jags if you have a 10 mile round trip?

Bluebell7575 profile image
Bluebell7575 in reply to Pickle500

I’m Canadian and no, that is not the case at all. My doctor is 2 minutes down the road from me. He provides monthly injections and I buy my own B12 OTC from a pharmacy also 2 minutes away.

Shania lived in Timmins which is pretty rural but would have medical centres in or close by. She drove to Deerhurst because that’s a resort with entertainment that you wouldn’t find in Timmins. She also moved to Deerhurst resort, she wasn’t driving there and back each shift. Timmins has a hospital, doctors offices and a population of 42,000 people.

Pickle500 profile image
Pickle500 in reply to Bluebell7575

I did wonder how she could manage the drive! But she explained that she had to raise her brothers and sisters after her parents passed away, so I figured they would still be in Timmins while she was working at Deerhurst at night.

So even if you're in the most rural of spots, you wouldn't be without a medical centre that can give regular jabs?

I'm just trying to understand why Aus and Canada have gone the route of OTC when US and UK seem firmly against it.

Bluebell7575 profile image
Bluebell7575 in reply to Pickle500

She moved her brothers to Huntsville to raise them after their parents died.

Yes, rural towns still have a close by medical centre. You may need to drive a half hour to an hour or so depending on how far north it is and how rural for a hospital.

My pharmacist has been extremely knowledgeable about PA, vitamins and supplements as well as my hematologist. My GP, not so much, but he was very open to learning. I buy a vial of B12 for $3.89 CDN and it’s good for 10 shots. I’m not sure why we’re less strict with guidelines other than it’s a vitamin and the WHO has stated it’s not toxic in any amount due to being water soluble.

Pickle500 profile image
Pickle500 in reply to Bluebell7575

Thanks for explaining. It must be good to know you can easily and cheaply get the vials you need, when you need them. I think it would solve so many problems if we could step out of our stuffy ways and do it.

But then, they've legalized cannabis in Canada right? That's not something I can imagine the UK ever doing. I wonder if it's because it's sparsely populated which makes things less taxing to police? But also, I think Canadians are generally a bit more respectful of their country and are way ahead on recycling and zero pollution tolerant. In the UK there are just too many people I think to allow relaxation of these things - it would just cost too much to regulate and manage (I think).

Litatamon profile image
Litatamon in reply to Pickle500

Canada is one of the top polluters in the world. There are many lists & ways of quantifying it but we are absolutely awful in that area. (Sorry could not leave that bit of erroneous positivity )

Pickle500 profile image
Pickle500 in reply to Litatamon

I think I meant more about local pollution than general carbon emissions.

I don't know when you last came to the UK but London has a 3-fold population over Toronto and is a messy, dirty, smoke-filled polluted nightmare. People don't respect the streets and leave their litter. Emissions are felt in every step we take. My experience of Canada is that there is little tolerance for flytipping or littering streets and although global emissions are quite high, there is a community sense of wellbeing that I do not recognise in the UK as much. This was 20 years ago though.

Litatamon profile image
Litatamon in reply to Pickle500

Pickles, Toronto has over six million people, so unless it is too early for my brain - which is a possibility, laughing - it is not three-fold.

We do have relatively clean cities. agreed.

--------

So sorry to hear that you can literally feel the pollution at hand. That is unfortunate.

Bluebell7575 profile image
Bluebell7575 in reply to Pickle500

Yes, cannabis is legalized here.

I always feel so terrible when I read about the access issues you have in the UK to obtain B12 shots. I’ve also read that the UK has a higher rate of individuals with PA which also makes it crazy that access is so difficult.

KEFNB profile image
KEFNB in reply to Bluebell7575

what’s the best place to buy them in Canada? I live in US and would like to order online

Bluebell7575 profile image
Bluebell7575 in reply to KEFNB

I can send you a link soon that many in the US use to get their B12 from Canada. Just have to find it for you KEFNB

Bluebell7575 profile image
Bluebell7575 in reply to KEFNB

Try Canadadrugsuperstore.com

KEFNB profile image
KEFNB in reply to Bluebell7575

thank you Bluebell7575!

Litatamon profile image
Litatamon in reply to Pickle500

Access is not a problem in our towns. But staffing can be. In Ontario we now have educational incentives to study in health care programs, in more underserved areas and stay for a number of years - in exchange for grants. We also now have made inroads to fast track foreign doctors into our system. Thank God, as we have been so ridiculous in this area, over the years.

Bluebell7575 profile image
Bluebell7575 in reply to Litatamon

So true Litatamon! I work in healthcare in Canada - I’m also from Ontario. Where are you in Ontario if you don’t mind me asking?

Litatamon profile image
Litatamon in reply to Bluebell7575

No not at Bluebell. It is a tad sad for me to say. I was downtown Toronto for over two decades but these health issues have forced me to a town in the GTA. I would list it but my name is a bit recognizable.

Where are you?

Bluebell7575 profile image
Bluebell7575 in reply to Litatamon

I’m in the Niagara area near Grimsby.

Litatamon profile image
Litatamon in reply to Bluebell7575

What a lovely area. Where spring often kisses earlier! Sometimes I used to go down to Niagara spontaneously, on those strange days where there would be a ten degree temperature.difference - when one is only an hour a half from Toronto!

I am northeast of the city now.

Scott-rock profile image
Scott-rock in reply to Pickle500

in Australia it’s classed as a food/health supplement not medicine. Supplements are big business here, massive amounts of vitamins from loads of companies available in pharmacies.

Asselchen profile image
Asselchen

I'm from Germany. While we can buy b12 and material for injecting as much as we want, most of us still do it without GP knowing or at least without GP having advised us to do it. People with an official PA diagnosis are usually still asked to have their injections done by a nurse in the office. Many of those with PA don't even know that they could easily do it themselves and only learn about it once they join a self-help group. So one can basically say things could easily be easier over here, but one still needs to put in a lot of research on their own for things to be easier. GPs are not helpful.

MorningMist profile image
MorningMist in reply to Asselchen

Do doctors in Germany have views on frequency of use or obsessions with serum blood levels, though, as we often experience here?

Asselchen profile image
Asselchen in reply to MorningMist

Yes, sadly it's not much different to what you experience in the UK. We have GPs who believe b12 can be toxic, we have GPs who think we should stop injections when levels are high, and so on. I wasn't diagnosed with a level of just over 300 pg/ml and severe neurological symptoms, as my GP thought it couldn't be from b12d. I had to send in a sample myself for them to test my MMA level. That's how I found out. No help from my GP regarding treatment whatsoever.

Asselchen profile image
Asselchen in reply to MorningMist

One more example: A friend of mine got diagnosed at hospital and was told to see her GP for loading doses. The GP refused loading doses after a short Google search in her presence, as "this would be too much b12".You see, the only difference here is, that we can buy b12 OTC.

MorningMist profile image
MorningMist in reply to Asselchen

That’s very interesting. I had always assumed that medical attitudes would be more supportive of b12 injections in a country where it was freely available.

Lgw19sof profile image
Lgw19sof

in Spain you can buy them over the counter , and the syringes and needles . No problemo .

Campano profile image
Campano in reply to Lgw19sof

Not everywhere in Spain. I live in Càdiz province and you need a prescription here. I have to get mine from Germany.

Lgw19sof profile image
Lgw19sof in reply to Campano

oh you can in Almeria .At any pharmacy.

Pickle500 profile image
Pickle500

UK, in general, has always been more uptight about things that the rest of Europe. When we were kids on school trips to France we'd make a beeline for cards with naked women on them, or head to Amsterdam for the freedom to smoke pot or watch women through windows.

I'm being deliberately salacious just to ride home the point that the UK's stiff upper lip extends to anything illegal or untowards. And even though B12 is a vitamin - something you can buy in the supermarket - those with absorption problems must be treated like drug addicts.

I can't see it changing but would love to imagine a time we could stroll into Boots and ask for 10 ampoules and a B12 starter kit.

MorningMist profile image
MorningMist in reply to Pickle500

Yes. I have always thought that the uptight attitude is a mask for naivety.

MoKayD profile image
MoKayD

I'm just guessing, but I think US doctors want to keep tight control over their patients. Maybe it's a power issue. As an example of this "control" when my GP retired I moved to a new medical practice and I discovered I do not "own" my medical records. Apparently each US state is different but in my state the medical practice "owns" my medical records. My former doctor amassed my tests and notes over 30 years. When I asked to have them transferred to my new doctor I got such a run around I finally gave up. I now have a very skinny medical file with my new GP. It doesn't make any sense to. me.

WIZARD6787 profile image
WIZARD6787

From USA. I believe many in my country have low self worth and compensate by trying to achieve self esteem. I would put the emotional maturate average of medical personal at about age 9. Maybe the age they started to experience their ability to regurgitate facts was desirable. I have a few times told doctors they suffer from IDD Imagination Deficit Disorder. I can do that only as I am a well educated white male who so far does not need to depend of medical prescriptions. I did when I was first dx. They failed miserably. They will not admit it even to themselves.

MrJustatip profile image
MrJustatip

Hmmm, I asked my Dr. if she would give me an RX so I can self-inject, but they just called me back and said, no they are not willing to do that. I asked why not and the front office girl said the Dr. did not say only that her answer is "no". I'm sure SI would mean the Dr. would not make any money. Crazy isn't it?

jade_s profile image
jade_s

Missed this the first time through.

I'm in Belgium where B12 is OTC.

My good doc of many years that i like(d) shouted me out of her office- did i go to med school for 7 years. That was when my b12 was high due to tablets but i had many symptoms including numb from elbow to fingertips and complaining already for a few years that something was wrong. I even asked her to check me for lice once, because i had bugs crawling sensation on my head. Wish i had known then it was a symptom of b12d.

She refused to test anything b12 related incl antibodies, i couldn't possibly be b12 deficient.

Cried all the way home and even had to stop halfway through my 10 min drive to call hubby because i was uncontrollably crying & upset. Luckily i had found this forum and started SI with German b12. Here we have cyano or high dose hydroxy and i just wanted the normal hydroxy.

So the answer is no, it doesn't seem to change their attitudes, unfortunately.

FancyPants54 profile image
FancyPants54 in reply to jade_s

They seem so blinkered. This is exactly the type of issue we have in the hypothyroid world. No one believes us. They don't test for the right thing and they can't interpret the results properly, whatever they test. They are stuck in the 70's in our case. We have to buy our own meds and tests if we want any hope of recovery and then we have to experiment. And this is a very powerful hormone we are experimenting with. The results of our experiments if we get it wrong can be brutal.

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