b12 advice

[Em19911]

Hey,

So for ten years or so now I’ve suffered with a “on and off” B12/folate deficiency. I had loading doses and then injections in 2017 and my levels were at the lowest of 198, folate was really low aswell then but then they checked my levels a few months later (1803) and obviously they would be high after it so they stopped it.

I’ve recently had symptoms again with bruises all over my legs and that always seems to be my main symptom and my levels now are 161, folate 3.2.

Also to mention my levels in 2022 were 183 then they went up to 218

My PA blood test was negative and has been a few times. My great nan had PA and b12, idk if it’s genetic.

I have symptoms of bruises on my legs and seems to be my main symptoms and that’s I went to the doc I’m tired, low energy, heavy pms etc..

I tried to stress to the doc today this isn’t my first time with b12 issues and from what I’ve read I need the injections but they want to put me on b12 tablets. Can someone give me any advice on what I should do. Thanks.

[wedgewood]

Sorry that you are having a bad time . Yes , if I were you I would self -inject Vitamin B12 . Have you read on this forum that’s what we all do because our GPs won’t give us enough injections to keep symptoms at bay . - It is not terribly expensive .I estimate about £2.00 for an injection including every thing . It is not painful at all for me . I use the IM method ( intramuscular) But you can use Sub-cut ( subcutaneous) method which uses a very short fine needle . Because B12 ampoules for injection are prescription only items in U.K. we get ours from excellent German online pharmacies ( over the counter Pharmacy only items) Needles , syringes , swabs and sharp disposal bin from medisave.co,u.k.

Will send you information on obtaining the B12 ampoules .

Best wishes .

[wedgewood]

The following reliable German online pharmacies(all registered with the German health authorities) will deliver vitamin B12 depot( Hydrocobalamin) single use ampoules to the UK

versandapo.de ( in Leipzig) use Google Chrome for translation. This is usually the best value pharmacy. U.K. IS Vereinigtes Königreich

Courier cost €9.99

Versandapo has a points scheme . You obtain 200 plus points when you register for the first time. Thereafter you get 1 plus point for every €1.00 that you spend . 250 points represent €2.50. . You can find out how many points you have acquired by going into your account.

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apohealth.de ( in Munich) site available in English( union flag flag, bottom left on my device)

Courier cost€20.00 for 10 packets . Lower cost for fewer packets..

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apotheke-marienbrunn.de use Google Chrome for translation. also deliver to Australia, New Zealand and USA. Drop down country list is in German. And UK is called. “Vereinigtes Königreich Grossbritannien und Nordirl”

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juvalis.de use Google Chrome for translation

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First of all, register with the pharmacy

When filling out the address form, you will see that the country is already filled out with Deutschland/ Germany . You must first change that to your own country by using the drop-down list to— U.K., UNITED KINGDOM, Vereinigtes Königreich, Grossbritannien , etc — however it is expressed. Do this so that your postcode and the rest of your address is accepted. Otherwise you will be unable to order, and you will be tearing your hair out!

amazon.de ( German Amazon) also sell Pascoe and Hevert , but depending on the supplying pharmacy may or may not supply the UK. you can’t use the pharmaceutical reference numbers to order from Amazon.de. You must use the brand names.

B12 ampoules are only allowed to be sold by registered pharmacies in Germany, so Amazon is, so to speak , a go-between.

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The following brands are usually available.

PANPHARMA ( formerly Rotexmedica)

1mg x 1ml ampoules B12 Depot ( Hydroxocobalamin)

Packet of 10

Pharmaceutical reference number1619 9653

Most popular B12 depot ampoule. Good value , but often out of stock.

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PASCOE b12 depot- package of 10 -1.5mg x 1ml ampoules

Pharmaceutical reference number—0756 8672

Packets of 10 x 10— 1.5mg x 1mg ( 100 ampoules) pharmaceutical reference number— 0756 8695

The Pascoe are much cheaper per packet if you buy the offer of 10 packets. If you inject weekly or more frequently., you will be covered. Otherwise, some ampoules may become out of date. The ampoules usually have about 2 years use-by date . But actually the pharmacies are within their rights to sell medicines with a 6 month deadline . I’ve never received ampoules with less than 15 months deadline in 10 years , and it’s usually been just over 24 months .

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HEVERT B12 DEPOT 1mg x 2ml ampoules. 1 packet of 10 pharmaceutical reference number 0607 8368.

HEVERT B12 DEPOT 1mg x 2ml 10 packets ( 100 ampoules) pharmaceutical reference number

0607 8380

ENTER THE REFERENCE NUMBERS WITHOUT SPACES !

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Use the pharmaceutical reference numbers to order from the pharmacies, it’s easier, but not if buying from amazon.de ( use brand names)

The above brands also sell Cynocobalamin ampoules. They are called B12. — NOT B12 DEPOT which is Hydroxocobalamin . Always enlarge the picture of the packets., to make sure you are ordering the correct ampoule that you want .

Best wishes .

[Narwhal10]

Hi Em19911,

Welcome here. You really need to learn about this illness because it is totally bizarre. Become a member of the Pernicious Anaemia Society and buy or download Dr Joseph Chandy’s book Vitamin B12 Deficiency in Practice. GPs do not know about it because they have so many other diseases to learn. Plus the bureaucracy.

Yes, there is a genetic link. The scientist as yet have not identified which chromosome and loci it is on. The Human Genome Project is a massive scheme.

Many of us follow the wedgewood method. Self-treat. The wallies are retesting your levels once treatment has commenced. So that 1803 mg/L is about as useful as a chocolate teapot. (Although, very edible). The British Society of Haematology know about re-testing mid and post treatment.

A personal story, I was sent a whole host of blood tests on a blood form. So, I removed the label for B12. The phlebotomist questioned it, so I blagged it. Unfortunately, the way THEY constructed THEIR sentence meant that I did not lie. Every night I shout, llwynogod yn mynd ar fy nhraed. It means foxes get on my feet. Obviously, I have slippers which so happen to be fox design.

Pwb lwc

[bookish]

Hi, B12 metabolism is strongly genetic and having a relative with PA is a stated risk factor (although PA is only one form of deficiency). A B12 issue cannot be ruled out with blood tests. You need regular injections, as oral does not work reliably for everyone and you do not want to get worse by risking it. Made that mistake myself, through lack of knowledge - mine and multiple doctors - that serum level does not reflect what is happening in the cells. Best wishes