Hi ,I have recently been dx'd with b12 deficiency and was put on b12 injections once a week for a month( just finished) and then am supposed to go to once a month. I still don't feel great ,have an elevated systolic, for me anyway, of 149 (I'm usually 114 to 118)and usually have to take a 1 -2 hour nap in the afternoon to get through the day if I do anything that is slightly physically demanding. I am (or was) a very active person and this is driving me crazy! Does anyone have an idea of how long it takes to feel "normal" again and does this mean towards the end of the month you start to get symptoms again? I would reaaly appreciate some info. Thanks

Hi Sam9, I just wondered how you are getting on as I myself have just been diagnosed with vitamin B12 deficiency. Thanks Jen

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[This message has been edited by moderator3 (edited 09-08-2002).]

Hi,
I'm still feeling tired and weak.I had a mma which was ok so I guess I don't have pernicious anemia and I had a cat scan which ruled out a tumor ,ulcer etc. It's been 5 months now of this.The b12 shots have helped a little but don't seem to be the cure.
What tests have you had so far?
Best wishes
Sam9

I've also just been diagnosed with B12 deficiency (am usually around 104), which makes a lot of sense - although I'm not vege or suffering from any digestive disorder, I have been always been short of breath, pale, tired and with freezing hands and feet. The test for pernicious anemia was negative. I have had 2x injections so far - a fortnight apart - and am now waiting for my next which will be a monthly. Noticed an improvement for about the first week with both, but then experienced what I can only describe as a "come down". I become moody, fatigued and irritable like I've never experienced before. I'm starting to wonder if the shots are a cure worse than the symptoms, is there anything else apart from B12 injections I could try?

I just found this board.......

I've been visiting another board, elsewhere, for peripheral neuropathy (which in some cases can be caused by B12 defs)--came upon it doing a google search for B12 info.

Anyway, thanks to info learned there, I'm taking daily sublingual doses of METHYLCOBALAMIN. I'm finally feeling better and my breathing is getting better. Seems even though you're getting a high dose in a B12 shot, usually it's in the form of cyanocobalamin, which isn't the "natural" form used by the body......and it's not as often as needed. Research has shown that sublingual supplements CAN increase your B12 levels (old thought was that only shots worked). The two types the body uses are: methyl-B12 which is used in the brain and for nerve regeneration, and adenosyl-B12 (dibencozide) which is used at the cellular level (energy). Hydroxo-B12 gets converted into these 2 types. If a person has trouble with conversion, especially with Cyano-B12, he's not likely to get the dose that'll help him feel more immediate effects (though whatever you do get will be better than nothing!). Someone on that board never felt much of anything while getting the cyano- shots but finally started feeling better after switching to methyl-B12.

Anyway, just thought I'd throw that out there.......certainly can't hurt to get something other than the cyano- and take it daily and see if that helps!

Tab

Hey, I was hoping that other people like me were out there. I too have B12 deficiency,or pernicious Anemia. I had the blood tests done and I can't absorb b12 from food or pills,so I get the shots every month for life. The first couple of monthly shots seemed to really work.They took away my pain in my feet and I got really excited,then after about 4 months the pain came back with a vengence.I was put on the graduated Nortriptyline where for 1 wk you take 10mgs ,then 20 and so on for up to 5 wks and then you find the right dosage. Well,that worked for a few wks then I had to keep increasing the dosage until I was up to 200 mgs.Dr. put me on Hydrocodone/acetaminaphen 5/500 but they don't work.He says that Neurontin don't really work,so I'm going to call my Neurologist and see what he recomends.On another board someone said that "we" need to talk and/or go to a pain clinic or a cronic pain Dr. I hope this helps in someway.I've been getting alot of info from 'talking' to people on healthboards because regular people just don't understand what it's like to have this problem and pain. boo emmy :bouncing:

Ive been b12 deficient twice and currently have low iron (I have not had anemia though) first time I had an injection and a week or so later I came out in horrible pimples all around my neck and chin, it took weeks to go away. 2nd time I took the supplement of b12 with iron and the same thing happened after a few weeks. It seems to be the way my body rids itself of excess b12 maybe. Anyway I am low at the moment but not deficient and find a multi-vit doesnt have the same reaction. I also found not drinking alcohol seemed to help my levels rise faster. I have been checked for intrinsic factor but am ok there. I dont really know why my iron and b12 levels are bad. I dont eat much red meat but eat everything else.

Hey, I was hoping that other people like me were out there. I too have B12 deficiency,or pernicious Anemia. I had the blood tests done and I can't absorb b12 from food or pills,so I get the shots every month for life. The first couple of monthly shots seemed to really work.They took away my pain in my feet and I got really excited,then after about 4 months the pain came back with a vengence.I was put on the graduated Nortriptyline where for 1 wk you take 10mgs ,then 20 and so on for up to 5 wks and then you find the right dosage. Well,that worked for a few wks then I had to keep increasing the dosage until I was up to 200 mgs.Dr. put me on Hydrocodone/acetaminaphen 5/500 but they don't work.He says that Neurontin don't really work,so I'm going to call my Neurologist and see what he recomends.On another board someone said that "we" need to talk and/or go to a pain clinic or a cronic pain Dr. I hope this helps in someway.I've been getting alot of info from 'talking' to people on healthboards because regular people just don't understand what it's like to have this problem and pain. boo emmy :bouncing:

I am sorry to read about your problems with a B12 deficiency. I am wondering if you could give me some indication of what is considered a low B12 count in the USA. I live in the UK and have the same problem as yourself but they say I should go on using up the supply in the liver and at the moment treatment is not necessary. I have a reading of 353 and suffer various aches and pains not sure if this is arthritis but my test for that came up OK as well! Many thanks for any advice.

I am wondering if you could give me some indication of what is considered a low B12 count in the USA. I live in the UK and have the same problem as yourself but they say I should go on using up the supply in the liver and at the moment treatment is not necessary. I have a reading of 353
In the US, the low end of the range is around 197 (depending on lab), but that is way too low! In Japan and some European countries, it's recognized that neurological symptoms can begin at levels of around 500, so their low levels are much higher (550, I think). So you see, in those locations, you'd be very deficient by those standards! It's neglect to tell you not to worry and to just go ahead and "use up" your liver stores of B12. Also, serum level isn't very indicative of true B12 status. I had a good serum reading, but still had symptoms and high MCV--it wasn't until I had methylmalonic acid testing that it was uncovered.

If your doc won't give you injections, get some sublingual B12--at least 1000 mcg dosage--and take several a day. Even passively you'll absorb some. I've reversed most of my symptoms on high oral doses of both methylcobalamin and dibencozide (adenosylcobalamin)--they're the 2 forms of B12 actually used by the body--they don't depend on the liver converting the usual supplemental type, cyanocobalamin. I'd use those if I could find them in UK, but cyano-B12 is better than nothing!

Good luck,
Tab