I found out I am b12 deficient in June with reading of 127 pmol/l. Dr gave me 10 injections 1 a day, stopped and sent me to further investigations with GI Dr, but not for intrinsic factor?!?! And you know how is with hospital appointments. I am waiting for one thing for weeks.
They tested b12 serum again several days ago and the result is now 260. I am afraid Dr will not continue with the shots and I do not feel good.
I do not know what to do. Everyone in my surrounding thinks I am hypochondriac. They say that my levels are right now and that I should be happy. But I read that it not goes like that. That you need to continue with the shots for long time.
Thanks
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Ma79ja
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Once diagnosed with B12 def then treatment is for life unless the deficiency is caused by diet/ lifestyle. After initial B12 jabs every other day (UK hydroxocobalamin) you go onto maintenance doses of once ever 3 months (hydroxocobalamin, its once a month for cyanocobalamin) or once ever 2 months if you have neurological issues (UK). So it depends where you are and what kind of B12 you have been given?
This is the link to the area on the US CDC website dealing with B12 Deficiency.
As Marre says, unless your B12 deficiency can be directly linked to a lack of B12 in your diet - the treatment should be B12 maintenance shots for the rest of your life.
Sorry that you are getting so little understanding from those around you. 260 may be in the normal range but is still quite low and doesn't show that you are no longer deficient.
The deficiency starts because something goes wrong that stops your body absorbing B12 - PA (the link to intrinsic factor that you mention) is one cause but there are others ... and the problem isn't always with metabolising it through your stomach - you may also be experiencing problems metabolising it at a cellular level.
Serum B12 looks at all of the B12 in your system, though most of it is in forms that your body can't use for things like maintaining and building new cells.
How are your folate levels? The body needs Folate in order to metabolise B12 ... and needs B12 and B6 to metabolise Folate.
From Center for Disease Control and Prevention (CDC)
"Vitamin B12 (cobalamin) deficiency should be on your radar screen for several reasons." It's geared toward healthcare providers but majority is lay-person friendly and informative.
Thank you very much for your replies and help. I still didn't see my Dr but I am assuming how he will react. maybe I am wrong. My folate levels are fine. I am low in ferritin and can't raise it. Haemoglobin is great. Have lot of GI issues. Had pancreatitis attack back in 2012 and that is when my journey started. Had some digestive issues even before. Started to have mouth sores and been diagnosed with oral lichen planus last year. Dr likes to send you to all special and very expensive tests, blame every symptom on stress and anxiety instead of give you some vitamin.
I am starting to be worried for my daughter who is 13 years old and her b12 levels dropped from something above 300 since 2 years ago to 190 pmol/l now. She shows some signs of deficiency. Memory problems, can't concentrate, angry for no reason, cry for no reason. Dr said that b12 deficiency in children is very rare. That all could be puberty but I don't want to blame everything on that.
I am afraid that my daughter and I will not be understand in medical community and will not find a Dr who will treat us. I live in Europe country which follows UK treatment for b12 deficiency.
I went to haematologist who asked me why I even came to see him. Nothing is wrong with me and that he thinks I do not eat right!?!? I so cried when I left his office. He didn't want to listen what are my symptoms.
I am terribly sorry to read your experience and think it would be better if you can get a second opinion, but perhaps you are still to see the gastro? He/ She may be of more help to you, you can only wait and see, but make sure you keep a record of how you are feeling, what your problems are so you know you have given him/ her all the information they may need. For your daughter I's recommend you ask your GP to give you a letter for her to have the active B12 test done, say (if you can) you will pay for it. The active B12 test is a better test to see if your daughter may be deficient in B12 at tissue level, its also a better test to see if you are B12 def at tissue level. What ever the reason for being B12 def, you need to have it treated, not left to see what may happen in the future I think.
Here some details of the active B12 test (it can be done in EU hospitals, or in UK, or apparently by post, in UK it costs £18,-).
Best bet is to ring them and find out how to if you are thinking of trying to organise this for you and your daughter, contact from the website:
Nutristasis Unit at St Thomas' St Thomas' Hospital North Wing - 4th Floor Westminster Bridge Road London SE1 7EH Telephone:02071886815 / 89543 - See more at: viapath.co.uk .
I hope this helps, one of my daughters (I have 2 on B12 treatment from late teens onwards, B12 def runs in my family, traced back to my grandmother starting age 20) was taken off B12 treatment, after 7 months she had the active B12 test, it was in their grey area, had MMA test which was far to high and now she is on B12 treatment for life.
They tested one thing at a time so it's always something left till they found I am b12 deficient. Even GI Dr is not concern a lot about that. He want to test me for more GI tests which is not so bad cause he wants to find a cause of it but no one seams upset about b12. They recently did capsule endoscopy and on my disappointment they said the results are not giving some clear clue but there is 'something'. I am so tired and the most scary for me is that no one understand and it is like you are paranoid and making a big deal of it.
The caspsule endoscopy can not take biopsies, only see things, so if they found something they may now want to do biopsies. Usually GI problems like achlorhydria, cronhs, H Pylori, coalic disease etc are excluded by biopsy results. Anyway, I hope you get to diagnosis eventually, it does take time, and often you can end up with you have a problem with taking up B12, why we do not know, but all common things have been excluded. It is good to exclude things, and hopefully you will get some diagnosis that may well help your daughter as well. Yes Gi problems also make you so tired and then B12 def on top is a double whammy I sometimes think. Marre.
I did endoscopy and colonoscopy a year ago. They showed mild gastritis and acid reflux. I am taking care of that by diet. I do not use any meds for that and rarely have some heartburn in the last 6 mos. I really hope Everything will fall into place soon.
Just one more question about symptoms. I have burning pain in one leg precisely tight. It's deep inside burning pain. Sometimes goes but it's usually present. Sometimes less painful and sometimes severe. And the tingling in feel and hands for me more like buzzing and vibrating sensations.
I don't know what your symptoms were prior to you getting your diagnosis with the b12 test and that makes it difficult to establish how far advanced the illness was by the time you got treatment. The treatment protocols are basically a mess - even the new ones. They don't treat the individual they just presume we are all the same.
B12 deficiency can cause vascular injury - it might be worth your while mentioning the burning pain in the leg - I don't know if it's related but it might be something to consider.
The tingling and hands and feet, which you describe as buzzing, could be nerve damage. You need to get as much treatment as you can to resolve these problems because they can develop into other things as time passes.
Your daughter - well, it's even more difficult to convince a doctor that a young person has a b12 deficiency than yourself. I've been in contact with someone about this - I'll chase it up today. But Marre is right, try and get her tested and if you get treatment see if it makes any difference.
I can't blame you for being worried about your daughter - it is really scary how things get overlooked and dismissed, and particularly so when it comes to children. You do need to get her tested.
The regime in a lot of other european countries is actually easier than the UK - you can get B12 treatment over the counter in France and Germany for instance.
May be you could try getting hold of a copy of Could it be B12? by Sally Pacholok and giving it to your doctor to read - it's written by a US emergerncy room nurse and her husband and has a lot of information on how B12 is frequently misdiagnosed and mistreated and really tries to expose myths such as 'B12 deficiency is rare in children'.
The problem is that Dr's don't like that you 'teach' them how to do their job. I do not even know how to give them some of the paper, guidelines you posted me and I've found online. I can't find some lab here which can do active b12 test. I am scared and do not know what to do. I live in Malta and here is pretty much the same as in UK but this is a very small country.
We understand what you are saying - our doctors don't like you to 'teach' them either.
If you are talking about the BMJ article, this is my suggestion:
I don't know how well you know your doctor, but I'm sure you could make something up that he wouldn't know about. Take it in and tell him you are worried because a friend of yours in England who is a nurse (see, now I'm making things up) has sent you this because the doctors in ENGLAND (not Malta, obviously) are not understanding b12 deficiency properly! And this is a big surprise to your nurse friend.
Ask him would he read it for you, and would he please give you his 'expert' opinion after he has read it?
Flattery. Lots and lots of flattery.
How does that sound?
I can't advise on the active b12 test because I've never had it done.
No, you can't read it unfortunately - but perhaps it is better to show the abstract to your doctor - it will make him want to read more.
You speak English excellently - and we are all confused in front of doctors!
Re: "English is not my first language", its not mine either, and I have been to Malta 4 times and can understand what you are saying. It is small (and lovely!). One can have the active B12 test done y post apparently, but I do not know how it works, perhaps use this service, or ring PAS phone line to ask them, see:
Just back from my Dr and did nothing. He said my levels are in the range now and that he thinks b12 is not my problem. He referred me to rheumatologist and that's it. I am devastated. I have and appointment with neurologist for December or January. What should I do?
Oh dear very disappointing for you but also good other things are being excluded. Did you feel better on B12? I felt like a new person shortly after starting it so will never stop it. I don't know if you can buy it over the counter in Malta? 260 is not that high after loading doses. If you do not have a dietary reason and felt better, B12 should be continued as per BCSH guidelines and intrinsic factor checked. Go back and take someone else you can trust with you. That's what I did and it worked. Do lots of reading first and be well prepared. The risk of taking B12 is nothing whereas the risk of not taking it when you might need it is huge. I know which one I choose! Another option is sublingual tablets or sprays- available in doses up to 5mg. I am taking 5mg- not convinced it makes a difference but then I don't know how much I absorb. I know others report they feel it works. Worth a shot if you can't get the injections. Good luck!
Not sure if this helps or if you are interested but I recently heard about a new oral prescription alternative to the injections called Eligen B12. I recently read that it works even if you don't have intrinsic factor (so even if you don't have normal gut absorption). Apparently it came out a month or two ago
Again, as mentioned to your other replies; I called the company to find out what you were referring to; you are right, the name Eligen B12 was out there before, but there was an Eligen B12 100 mcg, not 1000 that was put on the market with a company called Life Extension. The company then decided because it was going to go prescription medical food that it would only develop the Eligen B12 1000 mcg and it withdrew the 100 mcg from the market so there would be no confusion. The 1000 mcg is for clinically deficient patients instead of an injection. This one was just recently launched in March, which is why I was just hearing about it...
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