Unable to order B12 online anymore. - Pernicious Anaemi...

Pernicious Anaemia Society

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Unable to order B12 online anymore.

Silverfox2 profile image
32 Replies

Anyone else got this problem? I can't seem to find any German site that will accept orders from the UK for injectable B12 thats Hydroxocobalamin based rather then the other variety. Anyone else got this problem? Many thanks.

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Silverfox2 profile image
Silverfox2
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32 Replies
wedgewood profile image
wedgewood

When ordering the B12 ampoules, you need to call them B12 DEPOT . DEPOT means that they are Hydroxocobalamin . If you don’t state depot you will get Cynocobalamin . B12 .This is the B12 that used to be used in U.K. But now hydroxocobalamin is used by the NHS .

Cynocobalamin works well, and is still widely used in the USA . But Hydroxo.is considered to stay in the system longer, so needs to be injected less , saving nurse-time .Our favourite Hydroxocobalamin ampoule brand manufactured by Panpharma ( ( previously called Rotexmedica) is no longer available. Many of us now order Pascoe B12 depot which is 50% stronger than Panpharma —1.5 mg x 1ml We seem to prefer to inject 1ml rather than the Hevert B12 depot ampoule which is a 1mg x 2ml ampoule .

apohealth.de

is a good German online pharmacy which does not charge for delivery , The site is available in English . You can pay with paypal or card . You can use the pharmaceutical reference number to order from the pharmacies — sorry i haven’t got them to hand at the moment , But you can’t use them if you order from amazon.de

You have to use the brand name and specify B12 depot .

I hope this helps . I know how it feels when one is low on supplies , and ordering seems difficult. Best wishes .

WiscGuy profile image
WiscGuy in reply to wedgewood

Just general musing... I too have often seen statements similar to "Hydroxo.is considered to stay in the system longer, so needs to be injected less". Now that I think about it, and think about how little is known about treatment of B12 deficiency, I wonder what, if any, research is behind this assertion. I wouldn't be a bit surprised to learn that it is untested hypothesis based on other untested hypotheses regarding how injected B12 behaves in the body.

Not that it is important. We certainly have bigger fish to fry. But still, I am curious.

wedgewood profile image
wedgewood in reply to WiscGuy

Yes , your musings are logical , when one considers how little research is done on B12 deficiency, and how ignorant the medical profession is on the subject .

We also read that Cynocobalamin should not be used if the patient has Leber’s disease ( Maternally inherited optical condition , mostly affecting males )

I have used Hydroxocobalamin for 9 years but am thinking about trying Cynocobalamin , because it is cheaper and easily obtained from the German online pharmacies that we in the U.K. need to use ( B12ampouies only obtainable on prescription in U.K.)

I hope that you do not mind me asking if you use B12 Cynocobalamin, and if so, do you find it effective ?

WiscGuy profile image
WiscGuy in reply to wedgewood

I am in the US, and use the Cobalamin prescribed by my physician, which is Cyanocobalamin. (I recently read the entire pamphlet that is packed with the cyanocobalamin, and it is made in France.) I self-inject daily. My doctor, to his credit, had the ethical wherewithal to tell me when the neurologist made the diagnosis that my doctor was not informed on issues related to B12. He apparently asked another doctor for advice on treatment and it turned out to be the treatment regimen for blood symptoms (inject daily for a week, weekly for a month, then every other week, then monthly. As soon as I went from daily to weekly injections I experienced exacerbation of symptoms, and worse with every other week, and I never made it to monthly. I requested a return to daily injections; my doctor said he doubted that the insurance company would go for that, but I didn't hear a peep and have been injecting daily ever since.

I think I am seeing symptom remission with cyanocobalamin. I believe I have been experiencing nerve degeneration since at least 2009, when I was complaining about loss of sensation in my feet, and loss of proprioception leads me to believe that I have subacute combined spinal cord degeneration. I was diagnosed in 2021. I have not used anything other than cyanocobalamin, so have no basis for comparison. At one point I read a lot of research reports on B12 treatment of neural disorders. The studies are low quality: not enough subjects, not randomly assigned to treatment groups, days, weeks, and occasionally months, instead of years. However, there seemed to be a couple of patterns: generally speaking, groups that got more cobalamin did better than groups that got less, and groups that got cobalamin more frequently seemed to do better than groups that got cobalamin less frequently. Therefore, it seems like my best chance of regaining functioning lost due to nerve damage was to inject daily, and add supplements suggested on the forum.

wedgewood profile image
wedgewood in reply to WiscGuy

Thank you for the information . I really appreciate that. I think that I will try cynocobalamin . It is much cheaper than Hydroxocobalamin. . I have somehow been led to believe that Hydroxo is superior to Cyno. I have a diagnosis of Pernicious Anaemia ( A positive test for Intrinsic Factor Antibodies ) I was lucky , because about 50 % of PA patients get a negative result . This results in patients not getting treatment .

B12 deficiency is really a Cinderella condition . Too little research . Most doctors have too little or no knowledge of it . So we have to look after ourselves .My doctor only allowed me one injection every 3 months , but joining PAS has been a life-saver . I inject Hydroxocobalamin weekly . In 9 years I have improved well but am left , permanently now I believe , with a “burning feet “sensation . This is an improvement on totally numb feet which I had originally . All other symptoms have disappeared .

Thanks again for your information.

Wishing you the very best .

WiscGuy profile image
WiscGuy in reply to wedgewood

I said "I have not used anything other than cyanocobalamin". To be clear, I have injected only cyanocobalamin, but I take 10,000mcg oral methylcobalamin daily, hoping for passive absorption, said to be about 1%, in case methylcobalamin has special properties helpful in repair and regeneration of nerves.

Polaris profile image
Polaris in reply to WiscGuy

You might find this answer on the BMJ B12 Deficiency website under ‘Rapid Responses’, interesting,   WiscGuy

bmj.com/content/349/bmj.g52...

It was quite a long time ago. Dr Wilhelmina Rietsema has spoken at PA Conferences :

“Strictly speaking, the term 'vitamin B12' has been defined as cyanocobalamin. This form does not occur in vivo. Nutt correctly states that cyanocobalamin releases a cyanide group for every molecule of B12 that is used.

However, it is incorrect that hydroxocobalamin is the active form of the vitamin. There are two active forms of the B12 enzyme in the human cell.

First, Methylcobalamin acts as a co-enzyme for the conversion of homocysteine to methionine. Methionine then acts as a methyl-donor to a great number of reactions that need a methyl group, including the synthesis of myelin, serotonin, dopamine, noradrenalin, DNA and phospholipids. 

Second, Adenosylcobalamin is a co-enzyme for the conversion of L-methylmalonyl-CoA into succinyl-CoA which feeds into the citric acid cycle. 

Is it important which form is used in treatment? In most people, it does not matter. They can convert cyano- and hydroxo-cobalamin into the active forms needed. However, I have recently reported a case in which it did matter. The severe vitamin B12 deficiency, including dementia and psychosis, responded to treatment with high dose oral methylcobalamin, but not to equally high dose oral hydroxocobalamin. “

Rietsema WJ. Unexpected Recovery of Moderate Cognitive Impairment on Treatment with Oral Methylcobalamin.

Journal of the American Geriatrics Society 2014;62(8):1611-12 doi: 10.1111/jgs.12966[published Online First: Epub Date]|.

Competing interests: No competing interests12 September 2014 Wilhelmina J. Rietsema GP Nuffield Department of Primary Care Health Sciences, Radcliffe Observatory.

WiscGuy profile image
WiscGuy in reply to Polaris

Thank you very much for posting this information. If I am understanding it correctly, taking methylcobalamin in oral doses of 10,000 mcg daily, as I am doing in addition to daily injections of 1,000 mcg of cyanocobalamin, might be helpful in repairing and regenerating damaged nerves.

Polaris profile image
Polaris in reply to WiscGuy

I’ve found it’s v. much a personal thing    WiscGuy , as we’re all so different……..(thyroid disease and PA/B12Def runs in our family).

I’d been taking 5,000 mcg Methylcobalamin tablets daily for a long time until a very bad virus in 2017 left me with relentless fatigue, brain fog, proprioception, aphasia, etc. and I began self injecting Hydroxocobalamin every other day.   

Now mostly able to go 3/4 days between injections unless stressed or I’ve overdone things. 

Very best wishes finding answers and a good recovery WiscGuy.

Silverfox2 profile image
Silverfox2 in reply to wedgewood

I've tried that and they won't deliver to the UK anymore. I blame Brexit. :(

wedgewood profile image
wedgewood in reply to Silverfox2

No you can get B12 ampoules from certain German online pharmacies.

100% from

apohealth.de

You can get their site in English . They don’t charge for delivery , you can pay with Paypal or a card .

Silverfox2 profile image
Silverfox2 in reply to wedgewood

Sadly no luck with those places right now. :(

wedgewood profile image
wedgewood in reply to Silverfox2

They deliver to every country in Europe . But the ampoules we all used to order , namely Panpharma are no longer obtainable anywhere . You need to use Pascoe or Hevert b12 depot . which are al lot more expensive .

Silverfox2 profile image
Silverfox2 in reply to wedgewood

Is it still the same stuff though?

wedgewood profile image
wedgewood in reply to Silverfox2

Yes it is the same stuff .Just made by a different manufacturer .

deniseinmilden profile image
deniseinmilden in reply to Silverfox2

I've found it to be better, and in better quality ampoules too.

deniseinmilden profile image
deniseinmilden in reply to wedgewood

Thank you so much for this - I usually order quite a lot in one go so don't order very often. Although I always keep lots in stock, I dread not being able to get any.

Cherylclaire profile image
CherylclaireForum Support in reply to deniseinmilden

Me too, Denise. Start getting jittery when down to last 3 packs !

Also find online ordering a bit difficult.

Wish we could just pop into Boots !

phoebegrant profile image
phoebegrant in reply to wedgewood

Most of the German sites require you to create an account first and then try placing an order. Without an account, their software does not offer an option for overseas shipment.

wedgewood profile image
wedgewood in reply to phoebegrant

And when filling out your address it’s important to choose your country first from the drop-down last , other wise your postal code will not be accepted , and you are stuck !

Delilahmy profile image
Delilahmy in reply to wedgewood

Thankyou Wedgewood just ordered Pascoe depot

wedgewood profile image
wedgewood in reply to Delilahmy

Great ! 👍

Ipsofacto01 profile image
Ipsofacto01

I used apoheath for the first time last week and they were very good. Had to buy Pascoe brand which are more expensive but Exp. March 2024.

Silverfox2 profile image
Silverfox2 in reply to Ipsofacto01

Are you in the UK?

Ipsofacto01 profile image
Ipsofacto01

Hi yes, tracking was limited. I paid with PayPal and it arrived within 5 days.

deniseinmilden profile image
deniseinmilden in reply to Ipsofacto01

Thank you! It's always good to know we can get supplies.

phoebegrant profile image
phoebegrant

Most of the German sites require you to create an account first and then try placing an order. Without an account, their software does not offer an option for overseas shipment.

Lincsangel1 profile image
Lincsangel1

I have found that when buying pascoe B12 depot hydroxocobalamin if only ordering a box of 10 then apohealth.de is cheapest as they offer free postage... When ordering a box of 100.. its dated for ar least a year.. then versandapo.de is cheaper.. I just ordered again and it was only £78.55 including the postage

When ordering from either company always click on pay with PayPal... it is just so much easier.. and that way you don't have to put address onto their website.. that expects it to be German...

I've never had a problem ordering from either company... they both stock 5mg folic acid too for those needing it

Silverfox2 profile image
Silverfox2 in reply to Lincsangel1

I have no idea what I'm doing wrong then as it won't let me order from either. :(

Lincsangel1 profile image
Lincsangel1 in reply to Silverfox2

OK.. let's see if we can get you sorted.. I will send you a message 😀

LizWilsonpa profile image
LizWilsonpa in reply to Lincsangel1

Hi - just seen your reply after posting mine! That's an amazing saving with versandapo.de - and really helpful to know about the dating.

LizWilsonpa profile image
LizWilsonpa

Very useful responses - as always. Do love this forum!

Just to mention I used wedgewood's information and had a look. On apohealth.de the packs of 100 are less than half the price of the individual packs. There used to be some saving with Panpharma but nothing like this.

I haven't ordered as I have a stock in but it does bring it in line with the previous price for those who can order in bulk.

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