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Looking to self-treat in the USA--how to get b12?

AnnaUSA profile image
7 Replies

Hi everyone. I'm new here and glad to have found this forum. I recently received a definitive diagnosis of PA (IF antibodies, etc). I'm having a whole slew of symptoms, and have been for years. My doctor prescribed 1000mcg of cyanocobalamin 1x week for 12 weeks, then 1x month ongoing, and is not willing to prescribe more. I know from reading this forum and other sites that this is nowhere near enough. I'd like to self-inject/treat (with proper amounts of hydroxocobalamin) but I'm having trouble sourcing the medication. I tried ordering from the three German pharmacies that are mentioned here in this forum but none will ship to the US. I found one pharmacy in New Zealand that will ship to the US but the cost is high--appx. $20 USD for 3000mcg of hydroxo. I have very little hope of finding a doctor here that will treat me with the proper amounts of b12, and even if I did luck into finding someone, it could take a very long time to find them.

I saw a recent post here from a woman in the US who purchased from one of the German pharmacies, but they all refused to ship to me, so I don't know if something has changed recently.

Does anyone know of a (safe) source of injectable hydroxocobalamin that will ship to the US? I am practically bedbound from this illness. After I realized my doctor was not giving me enough b12 to properly treat me, I was so excited to find out I could order supplies myself and get the amount I need, only to be told 'no' by all three German pharmacies.

Thank you for reading.

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AnnaUSA
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wedgewood profile image
wedgewood

If you ask the German online pharmacies direct if they will ship B12 injectable to USA ,or UK , they will tell you that they will not , because in those countries injectable B12 is supplied only on prescription , and they feel they must obey the regulations of the country they supply . So best not to ask direct ! But I do know that mycare.de has shipped b12 Hydroxocobalamin ampoules recently to USA . The shipping is expensive at $33.00 , so it’s best to place a large order , say 10 x 10 packets . These ampoules are manufactured in Germany - I use Rotexmedica B12 depot ampoules . “Depot” indicates Hydroxocobalamin, so you must include that . These are 1mg x 1 ml , so convenient to inject a small amount of liquid , as opposed to HEVERT which are 1mg x 2ml .

Another source for you is vitaminb12online.com . This company is in Australia , and will ship Methylcobalamin, Hydroxocobalamin and Cynocobalamin ampoules to USA . As a kit, for subcutaneous or Intramuscular injection , or simply the packets of ampoules . These ampoules are manufactured in Vietnam , under license from an Italian pharmaceutical company .

vitaminquick.com in Florida sell Methylcobalamin with a kit .

I know the desperation one feels when one needs more B12 than the doctor will allow ,so I hope that I have helped you . Very best wishes .

CarlaEP profile image
CarlaEP

Hi Anna, I’m sorry to hear this. I am new to this site and medical problem only just diagnosed after many years missed by Doctors/ GP’s.

Have you looked at France ? As I have read it’s available over the counter there. Not sure if this may help you but hope that you find some soon. Take care

Sleepybunny profile image
Sleepybunny

Hi,

I'm in UK but I think it may be possible to obtain B12 over the counter in Canada without a prescription.

B12 books I found useful

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive with lots of case studies.

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Has members in other countries.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org/

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

I am not medically trained.

wedgewood profile image
wedgewood

You can get injectable B12 from Sandoz Canada , but it is a multi dose vial, not single use ampoules , and Cynocobalamin, not Hydroxocobalamin.

Coxeymcqueen profile image
Coxeymcqueen

Hello,

Are monthly injections not working for you in terms of your symptoms or do you think you need more frequent injections because that’s the experience of a lot of people here?

If a monthly regimen is working for you and your symptoms are controlled then it could be enough. It was for me until I started to train for a marathon and then I upped it to weekly.

Hope this helps.

MoKayD profile image
MoKayD

Hi,

I'm here in the US. Monthly shots are the standard prescription for the US but when I told my doctor that I thought I needed a B12 shot every three weeks my doctor was happy to adjust my treatment. I actually vary the length between my shots, sometimes I go for four weeks and sometimes I need them at three weeks. Have you tried talking to your doctor about your concerns? Have you started your treatment yet? You may find that the prescribed treatment works for you. Everyone is different in their response to B12 shots.

scnuke profile image
scnuke

Hello AnnaUSA,

You have a couple choices that have worked well for me.

You can order a 30ml multi-dose vial of cyano B12 from biosenseclinic.com

They are in Canada and it costs around $60. Injections supplies can be found on Amazon.

3ml syringes with 23 or 25g needles. Extra needles can be bought separately since it is not advised to draw and inject with the same needle. Many people do that, but IMO it is better to have a fresh, sharp needle to inject IM.

You can also see if your physician will give you an Rx for B12 injection that can be prepared at a local compounding pharmacy. In my case, I use preservative free methyl B12 supplied in pre-filled syringes that the pharmacist prepares. It is for SQ injection. It must be refrigerated and is more expensive, but I find the methyl formulation works better for me, but YMMV. There is a lot of discussion about cyano vs. methyl vs. hydroxo and which, if any is better. Since my PA diagnosis, I sometimes feel that my body is a giant petri dish and I am watching to see what positive results grow in it.

Best of luck in your journey.

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