I am hoping that you can help - although I am not sure what I am asking - but just need to offload -
I hope that you will be able to see my previous posts when you will see that although not having had a B12 diagnosis, because of my many symptoms during the past two years, and no one being able to give me any answers - my GP has been allowing me to SI B12 EOD since April 2023 - and although very slow progress over the past seven months I have gradually had a lessoning of the symptoms and at last the fatigue lifted - although I was not feeling well, I did feel more motivated and it made it possible for me to do more both socially and physically.
However when I had a consultation with my Rheumatologist 28/9 - he was not happy about the B12 injections in particular my SI and wanted me to phase them out, but would agree to one every three months injection done at the surgery ! His knowledge seemed very lacking in B12 as he was worried about what this level of B12 was doing to me in terms of negative reactions ? - and as my B12 blood levels were over 2000 - he said I clearly did not need any further injections !!!! I did say that I could not risk going back to where I was in feeling so ill and he did say he didn't want that either, but that he didn't think that my symptoms would return. He also doubted that I was injecting into the muscle and was concerned about infection - his final comment was that it was not a good use of NHS resourses!! I was very unhappy about this - but having slept on it I decided to try stopping the injections and see how long I could go ???
After 3 - 4 days symptoms started to return - palpitations, burning feet and shooting pains in my feet and legs and after a week - the joint pains weakness and fatigue so that I was feeling just as ill as I was six months ago, when I felt as if I was slowly dying I then restarted the EOD injections 18/10 and within a couple of weeks the burning feet/shooting pains and palpitations had gone again but have not yet experienced any further improvements.
I had an appointment with my GP on 2/11 - and updated him - he was lovely and could see and hear what had happened and reassured me that he would continue to prescribe the B12 for my EOD injections ongoing, and would get in touch with my Rheumatologist to explain the situation and tell him what he was doing.
I am not sure how long it will take now to get back to where I was so that I can start to feel better again, as right now I am just dragging myself through every day feeling so ill and miserable. I know that I should be feeling hopeful and grateful that I have such a lovely GP who is looking after me, but .............................???? It is really hard when I just seem to go round in these every decreasing circles. However the really positive thing is that for whatever reason, I have proved that my body cannot manage without the EOD B12 injections.
Sorry for this lengthy post but hope that this will help to inform you of my situation.
Many thanks
Lemondrizz
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Lemondrizz
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I'm sorry to read that things are challenging for you.
Progress in treating B12 deficiency can be slow especially if a person has been left untreated for a long time.
I wish I had your GP....
"His knowledge seemed very lacking in B12 as he was worried about what this level of B12 was doing to me in terms of negative reactions "
In your situation, I'd be tempted to ask the rheumatologist what the potential consequences are if treatment for B12 deficiency is delayed or inadequate.
If your rheumatologist doesn't know, maybe show them this PAS article on SACD, sub acute combined degeneration of the spinal cord.
Thank you Sleepybunny - for all this great information -
I will not be expecting to see my rheumatologist for another year - I would not mind if they said that B12 was not their speciality and they would check it out - but when they tell you things that I knew were not true !! It is very difficult to challenge them although I did try - but he was not listening - I just got blinded by medical jargon !!
Hence my offload to you - thank you for allowing me to do that -
Thank you Sleepybunny - really grateful for all your help - I can keep this in my back pocket but at present I am very happy with my GP who is looking after me really well, with regard to my Rheumatologist I do have a lot of respect for him as I know that with regard to my severe osteoporosis - he has been looking after me for the past nine years and I would not be where I am with my back etc if it were not for the care and treatment he has given me - which is why it is so disappointing regarding his attitude re the B12 - I actually think that his ego got in the way and wait to hear his response when my GP takes him on and updates him !
I have in past written to specialists as well as GPs.
I had some very difficult experiences and was left untreated for many years.
I have come across some articles suggesting an association between b12 deficiency and osteoporosis. search online for "osteoporosis B12 deficiency" if interested.
Many on this forum report folate, iron and vitamin D deficiencies as well as B12 so I hope your doctors have checked these.
In severe cases of B12 deficiency, it is possible for the spinal cord to be affected.
I hope your doctors, GPs and specialists, are aware of this possibility.
If they are not, then may be worth passing the PAS article about SACD to them.
(link in other reply)
SACD can sometime be treated effectively with lots of B12 if found early enough.
You mention symptoms that would usually be considered as neurological eg burning feet.
Apologies if I've asked you before but were you ever referred to a neurologist?
NICE when to refer B12 deficient patient to neurologist/haematologist/gastro-enterologist
I am finding this link between B12 deficiency and osteoporosis very interesting as when I was first diagnosed nine years ago - I had gone from not knowing that I had osteoporosis to severe osteoporosis with three vertabrae fractures and was questioned about my lifestyle and drinking habits almost to the extent that I was made to feel as if I was not being truthful is saying that I did not drink !
What I find harder to understand is why my rheumatologist or any other consultant that I have seen has no knowledge of this link - although I guess that the first thing they will look at is my B12 BT results and not see that there might be a problem.
For me by far the hardest thing to do is to ask about it or challenge them in any way, although I always say that I have done research on the subject to be as informed as possible in order to help them to help me and understand what is going on - but the reaction most often is very negative as they see this as a threat to them and their knowledge.
I stopped taking B12 because my GP said I had dangerous levels. Within a week I noticed all my symptoms were coming back. I actually lasted 3 weeks but when I passed out when I was shopping I decided that my GP was an idiot and started taking B12 again. However I recovered very quickly, within a week.
IMO I think that you should inject every day to get over the setback. It can't hurt you.
I think that's a carry-over from the past. I grew up with the attitude my parents had -doctor knew everything, he was never to be questioned.
Over the years I learned the hard way. I nearly died several times due to doctors' ignorance and laziness but it really only sank in after my B12 injections were stopped and after almost being admitted to a nursing home with dementia.
Then I discovered this website and really learned the only way to go was DIY.
Thank you for this and sorry that you had such a bad experience. Yes having the help from this forum is very beneficial.
I think in this case even though I tried to explain about the B12 deficiency causing the problem - he was not listening and was only referring to blood forms showing that I did not need to continue with it. I now have proof that stopping the injections has caused me to feel so ill again in less than a week and my GP is upholding this and realising that my need for B12 is critical.
If your GP should ever stop prescribing the B12 ampoules , you do know that you can obtain them from excellent German online pharmacies . No prescription required in Germany . Syringes needles etc obtainable in U.K.
Cost about £2 per injection. Information obtainable here . Your doctor shows displays poor knowledge of B12 when he thinks you may not be injecting into the muscle ( Intra-Muscular injection ) You can use the Sub-cutaneous method , which is equally effective .as I.M. Many members on the forum use Sub-cut . I now use sub-cut after using I.M. for 9 years . ( into the front of my thighs, with a very fine short 6mm needle )
I’m 75 years old a few years ago I started having B12 jabs every 12 weeks my b12 was below 150 .
After 5 weeks I run out energy and find it hard to carry on with my daily walks which I love. I have now decided to inject myself every six weeks to see if that helps I’ve been looking online onGerman sites to buy my b12 and needles but it’s just a minefield to me.
I need step by step help to order my b12 and what ever I need from Germany online.
I hope that you will find the following information useful and easy to follow . Yes it can be intimidating at first , but you will be surprised how quickly you will get used to ordering and injecting . I am 86, and can honestly say that it’s a doddle after 9 years of Self-injecting .
The following German online pharmacies will deliver B12 depot single use ampoules to U.K. .
apohealth.de Site is obtainable in English (Union flag, bottom left on my device ) also deliver World wide but not to Australia or New Zealand .
versandapo.de Site is in German . Use Google chrome to obtain translation .
The following brands are obtainable
Panpharma ( formerly Rotexmedica ) b12 depot 1mg x 1ml ampoule ( depot indicates Hydroxocobalamin) ref no 16199653. This is the most popular ampoule used by PAS members .
It is the best value , but sometimes is out of stock . You can then opt to be emailed to be told when it is back in stock .
Pascoe B12 depot 1.5mg x 1ml ampoules- Packet of 10 ref no 07568672
Pascoe b12 depot 1.5 mg x 1ml ampoules-10 packets of 10 ampoules (100)
Ref no 07568695
Hevert b12 depot 1mg x2ml ampoules packet of 10
Ref no 06078368
Hevert b12 depot 10 packets of 10 ampoules- ( 100)
Ref no 06078380
When filling out your address, do fill in your country first of all . “Germany”: will be displayed , so you must change this with the drop-down list which will appear , — to U.K./ Gross Brittanien/ Vereinigtes Königreich GrossBrttaniens — how ever it may be expressed. If you don’t do this , your U.K. address and post code will not be accepted , and you will end up in a tizzy . We don’t want that !
When filling out your address, do fill in your country first of all . “Germany”: will be displayed , so you must change this with the drop-down list which will appear , — to U.K./ Gross Brittanien/ Vereinigtes Königreich GrossBrttaniens — how ever it may be expressed. If you don’t do this , your U.K. address and post code will not be accepted , and you will end up in a tizzy . We don’t want that !
Intra-Muscularly ( I.M.)
You will need a long 1 1/2 inch x 21 G withdrawing needle to withdraw the B12 from the ampoule
A 1inch x 25G injection needle
A 2ml syringe
A back of alcohol swabs
Inject into the Vastus Lateralis muscle which is nearest to the surface in the outer middle third of the thigh ( look at diagrams on Google )
Many thanks Wedgewood for this information - I am hopeful that with my GP looking after me I will still be getting my B12 prescriptions for EOD injections - but if anything changes then I will certainly be getting them privately. As I was taught to do SI IM injections I am happy to continue in this way.
I mention sub-cut , because many people who need to self-inject are put off by I.M. injections ( the length of the needle I think . Yes, Doctors in the U.K. use I.M for B12 injections, but on the packs of B12 that we get from Germany Sub-cutaneous injections are approved, as well as I.M. ( written on the pack )
My surgery will not give me B12 injections, because I told them that I self-inject l
It is the experience of many, including me, that once on a certain schedule, reducing leads to return of symptoms. Continue on your current schedule. You may be able to reduce in the future sometime, just not now... Healing is more important than the pain of an injection every day or EOD.
BTW, I was able to very slowly reduce my dosage to 50mcg/day injection and it has the same effect as higher doses. In fact, I feel even better than when I was on a higher dose. The key is consistency, as the body cannot adjust easily or quickly to changed supplementation schedule, especially reduction.
I does my heart good to hear of a GP who will per prescribe EOD SI as per the established guidelines based on symptoms. Also does my heart good that you shared your improvement from following the guidelines.
Consider letting your GP handle your Rheumatologist with regards to B12 rather than take on the task of retraining.
Thank you Wizard - yes I am constantly reading on the forum of people struggling and not getting the support from GP's with regard to B12 deficiency so even on the bad days I have to remind myself how lucky I am to have such a supportive GP - I think that often he is working in the dark - but he always listens and is willing to accept how much and how quickly I am being affected by not having the injections. Yes he is arranging to speak with my rheumatologist - I will be interested to hear the results of that conversation ??
I am just hopeful that it will not be too long before I return to feeling a bit better rather than as if I am slowly dying as I am right now. Many thanks for your interest.
It saddens me when I hear that someone here has been advised to stop or reduce their injections, for no other reason than their B12 level is high. What of offsetting potential decline against successful monitored long-term treatment giving gradual improvements ? An unnecessary risk. There is no evidence to support that decision.
I am so glad that your GP is knowledgeable re B12 deficiency.
I went to an Oral Medicine consultant who was helping me with my angular cheilitis and burning tongue - he was most concerned about my "sky-high" B12, almost became a distraction. He wrote asking my GP to monitor my reduction of B12 and luckily for me that was ignored. Much later on, he told me that having discussed my case with experts, he had had a complete change of heart, that I should not reduce my B12 at all and that tablets would be useless as an alternative to self injection. Unfortunately, my lovely GP has now left the practice and my consultant did not put this in writing.
However, I mentioned his new opinion in my letter to him, sending a copy to my surgery !
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