Hi, I am a B12 deficienct newbie and was reading that the methylcobalamin has some advantages over cyanocobalamin. Do you know if this can be purchased in injectable form anywhere please. I have not been able to find anywhere as yet.
My GP has just diagnosed chronic fatigue syndrome after an initial loading dose failed to produce any real improvement, I have since been taking 1000mcg 3 times a day which has helped with my breathlessness and I feel another loading dose may produce an improvement based on this but unfortunately by GP is adamant that I've had what I need and has referred me to a specialist CFS clinic.
Grateful for any advice you can give, thank you 🙏
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AngelaWoo
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Methylcobalamin ampoules 1mg x 1ml are obtainable from Arnika, a small manufacturing pharmacy in Munich Germany . You can’t buy directly online from them .
Hello, thanks for your reply. I am in the UK and had thought that we weren't able to purchase Hydroxocobalamin but would be very happy to be corrected on that, otherwise will try the company you have mentioned. Thanks.
We can buy Hydroxocobalamin from some German online pharmacies . German online pharmacies that will ship to U.K.
Brexit has caused problems for German online pharmacies who were supplying Vitamin B-12 ampoules to U.K. They now have to register with U.K. customs and collect any VAT for them and also have extra paper work,because we are no longer in the single European market. So many of those pharmacies have given up shipping to U.K. . Some , thank goodness, still do .
bodfeld-apotheke.de. A large and reliable pharmacy But they will now only accept payment from U.K. by Bank Transfer . Simple if you have mobile or online Banking .They supply all the information that you need to make a transfer . Otherwise a trip to your bank , for which the charge is £25.00 !
Courier €9.89
You might be able to pay using your Amazon account . Worth a try !
The drop-down list of countries on this site calls the U.K
“ Vereinigtes Königreich Grossbrittaniens und Nord Irland “ United Kingdom of Great Britain and Northern Ireland “ (In case you don’t recognise it !)
The Rotexmedica packet is displayed blank . You don’t see the usual red and white packet for some reason Maybe because Rotexmedica has been bought by a French company, Panpharma , and they expect the carton to be changed( I don’t really know) But not to worry - they send the right stuff in the usual packet .
pharma24.de Courier 14.90 This pharmacy sent me 100 ampoules with a use -by date of only 12 months , where other are 2 years and more . I complained , but was told that 6 months is an acceptable use-by date, and they had sent me 12 months . So ,if you use this pharmacy , don’t order more than you would use in 1year .
Amazon.de ( German Amazon ) Obtainable in English Often have Hevert B-12 depot ampoules which are 1mg x2ml ampoules ,if they don’t have Rotexmedica 1mg x 1ml . So same strength , but double the amount of liquid .
“Depot” indicates Hydroxocobalamin, which is what the NHS uses . Amazon delivery charges are reasonable.
——————————————————————————
Search for Rotexmedica B12 depot . ( Hydroxocobalamin) These ampoules are 1mgx1ml
Ref. number to get straight to packs of 10+ -03862297
For packs of 100 ampoules (10 x 10) 03862305
This is correct for June 2021 . Can be out of stock sometimes , but back in a day or two .
If a site is only in German , use a translation app , or Google Chrome .
Bear in mind that some sites refer to the U.K. as
Vereinigtes Königreich Grossbritannien und Nord Ireland ( United Kingdom of Great Britain and Northern Ireland) on the drop-down country identification list
Also plain” Grossbritannien “ . The sites named above do all ship to U.K.
Needles , syringes ,swabs and yellow sharps boxes for disposal of spent needles obtainable from
Each CCG/Health Board in UK will have its own local guidelines on treatment/diagnosis of B12 deficiency. Worth getting hold of local guidelines for your CCG/Health Board and comparing them with BSH, BNF and NICE CKS links.
It's worth knowing what you are up against locally as some local guidelines on b12 deficiency differ from BSH, BNF and NICE CKS guidance.
I hope you are not in the UK area discussed in blog post below which has a poor reputation on this forum for how B12 deficiency is treated and diagnosed.
What does your GP think caused your original B12 deficiency?
What's your diet like?
Do you eat plenty of B12 rich food eg meat, fish, shellfish, eggs, dairy and foods fortified with B12?
IF yes to B12 rich diet then cause of B12 deficiency more likley to be an absoprtion problem in the gut.
Dietary b12 deficiency is sometimes treated with low dose cyanocobalamin tablets (50 mcg).
My understanding of UK guidelines (see BSH Cobalamin and Folate guidelines) is that B12 deficiency with neuro symptoms should be treated with B12 injections even if the cause is dietary.
"My GP has just diagnosed chronic fatigue syndrome after an initial loading dose failed to produce any real improvement ...... GP is adamant that I've had what I need and has referred me to a specialist CFS clinic."
ME/CFS is a diagnosis of exclusion which means that it shouldn't be diagnosed until all other possible diagnoses are ruled out.
Quite a few on here have been diagnosed with ME/CFS/Fibro prior to getting a diagnosis of B12 deficiency.
I found that a ME/CFS diagnosis meant all investigation into other possible causes stopped and in my area ME/CFS seemed to be treated more as a mental health condition.
Misdiagnosis of B12 deficiency as other conditions
Links below are to forum threads where I left some more detailed replies with lots of B12 info which you may find useful eg more about causes of b12 deficiency, B12 books, B12 websites, B12 articles and a few hints on dealing with unhelpful GPs.
There may be some details in the links that could be upsetting.
Hi, thank you for all this information. I will take some time to read through and digest.My B12 was 137 in December (this was discovered as I had Bells Palsy), 300 in April after 3 months of 50mcg cyanocobalamin then dropped to 193 in July. Symptoms increased significantly from June, tingling, breathlessness, distressing confusion and fatigue.My intrinsic factor test came back as normal however my father has PA and I had to really push for any recognition of being B12 deficient after GP tried fobbing me off as having long covid and said my B12 was within normal range. She eventually wrote to a haematologist who advised b12 injection. I did not get a formal diagnosis, just assumed they'd agreed it was PA. I will go back and ask...
My loading dose was 6 over 2 weeks. Then to be 3 monthly. I do have neurological symptoms, tingling, and had spotted the NICE guidelines for neuropathy over the weekend however my GP today was absolutely adamant that there would be nothing further but did agree to a top up every 8 weeks instead of 12.
Diet is good.
I have just successfully ordered online, after looking into obtaining injections privately today it was £45 a shot. Just need to get it in me and keep fingers crossed next.
Don't rely on there being evidence of a past diagnosis of PA (Pernicious Anaemia) or other cause of B12 deficiency in current medical records.
If you get proof of diagnosis eg positive test result/letter from specialist confirming diagnosis/statement in medical records etc keep a copy in a safe place in case you need it in the future.
"She eventually wrote to a haematologist who advised b12 injection."
I'm assuming the haematologist wrote back to your GP. Might be worth getting hold of a copy of the letter that the haematologist wrote to see exactly what they said.
My understanding of the guidelines is that with neuro symptoms you should have had a B12 loading injection every other day for as long as symptoms continued to improve. This could have been weeks even months of every other day injections as no set time limit is given in BNF.
There may still be a chance of getting more treatment from GP but I'm pleased you have found an alternative.
Have a look at Point 1 in link below which is a letter template for writing to GP if under treated for B12 deficiency with neuro symptoms present.
Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.
Best to keep letters as brief, to the point and polite as possible. It's harder to ignore a letter in my opinion.
When a letter is sent to GP, worth including a request that GP practice sends written confirmation to letter writer that they have received letter.
I included a request in letters that a copy of letter was filed with medical notes.
My understanding is that in UK, letters to GPs are supposed to be filed with medical notes so are therefore a record that an issue has been raised.
Useful to have a paper trail in case there is a need for a formal complaint over treatment in future.
Letters could contain relevant test results, date of diagnosis, brief family and personal medical history, extracts from UK B12 documents, requests for referrals to relevant specialists eg neurologists, haematologists, gastro enterologists.
Keep copies of any letters sent or received.
If you write a letter, might be worth mentioning any concerns you have about developing permanent neuro damage including damage to spinal cord, sub acute combined degeneration of the spinal cord (SACD) if not given BNF treatment for those with "neurological involvement" which includes every other day loading injections for as long as symptoms continue to improve.
GP can find the info in BNF book Chapter 9 Section 1.2 or in BNF link below.
Loss of ability to do mental arithmetic has really struck home reading through the list. I used to be able to do quite tricky sums but now resort to a calculator for things I know I should be able to do. I had put it down to age...
Greetings I also have chronic fatigue and fibromyalgia. I also went online to get my own supply of Hydroxocobalamin and inject every other day. Most times I get super tired after every injection, but it's happening less so I'm thinking my levels are going up. I chose Hydroxocobalamin because it helps improve your neurological function. You can look online for a seller.
Hi Angela I find it better abundance less stingy than Hydroxocobalamin.I was ordering from VitaminB12 online but they were recently out of stock. I have just ordered from Ampavit but not received any yet. Good luck Carla
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