I was diagnosed B12 deficient 2 months ago, after I collapsed on my bed after vertigo. The reason that doctor told me that since I am pure vegetarian and do not take enough dairy products or supplements, my B12 levels have dropped substantially. The doctor prescribed me methylcobalamin 1500 mcg sublingual one per day for three months. In a week time I got lots of symptoms including brain fog, weakness, vertigo, tingling and burning in feet, headache, vision issues, weak legs and lot of sleepiness. I used to sleep around 14-15 hours a day and could not walk a little bit.
In a months time I developed tremors during sleep at nights which used to last for 2-3 hours. I consulted ENT for my vertigo, 2 neurologists and 1 physician. The ENT reports and MRI brain was normal, however the platelet count was dropped to 116 (per microlitre). Also urine, thyroid and diabetes test were normal. My second neurologist told me that since my B12 level was very less (I was at 99), I need shots for a week and that the drop in platelets count could be due to some viral infection. I got 5 shots every alternate day after which my weakness increased substantially for a week. I felt that I will die. However since this was a common experience as mentioned by many in this group it gave me some hope to fight.
Now after two months many symptoms are resolved. But I still feel lot of weakness, tremors at night, anxiety and breathlessness sometimes. I need suggestion from other in the group:
1. Is tremor common in severe B12 deficiency? What should I do to resolve it as it is creating lot of anxiety issues for me.
2. Should I need weekly shots apart from sublingual, as some researches says that these are as effective as shots.
3. Should I change for some other form of cobolamin - hydroxy, cyno. or increase the dosages of sublingual.
4. It has been 2 months for my weakness. How much more time it will take to go away. I have changed my diet and switched to B12 enriched diet.
5. Is breathless a common symptom in B12 deficiency.
I am getting depressed day by day. Please guide and help.
Thanks,
Nitin Gautam
Written by
gautamn2002
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sublingual can be useful at maintaining levels in the case of an absorption problem.
Although your first doctor said vegetarianism was the problem continuing low levels after the sublinguals actually shows that it isn't dietary but it is an absorption problem.
Absorption problems reduce the amount of B12 you will get out of a sublingual quite dramatically - averages around a drop of 99% - however the dose you were taking would still mean you were getting well over RDA so levels would start to build up again but it's going to be really slow if you rely on sublinguals - too slow - hence the injections.
Unfortunately passive absorption that allows high dose oral/sublinguals to work doesn't work for everyone and your experience to date implies you are probably one of the people that it isn't going to work for.
Which type of B12 suits you best is a very personal thing so it is always worth experimenting as there isn't any toxicity. Personally I use a mix of all four forms - topping up cyano/hydroxo with methyl and adenosyl as I find methyl and adenosyl help me with some symptoms that cyano/hydroxo alone don't seem to resolve ... however, I am one of the people for whom sublinguals/high dose does seem to work
Thanks a lot Gambit62 for replying to my post. I would definitely talk about shots with my GP in next meeting.
Yesterday I had my third CBC test and report says that my platelets count dropped to 106 level [normal is 150-450]. It was 150 two months before when I was diagnosed B12 deficient, and then reduced to 116 a month ago. My question is is this due to low levels of B12 or can be something else. I have regained some strength now after 2 months which shows improvement because of treatment but the reduced platelet count is making me nervous. Please guide if I need to go consult some other doctor for second opinion.
Its not something that is primarily associated with B12 deficiency but could be related - many B12 suffers report bleeding more profusely which is likely to be to do with platelet counts.
Thanks Gambit62 helping me out in resolving my B12 deficiency issues. It has been around 75 days since I am on treatment and the issues are resolving, but the improvement is quite slow. I have been given 5 shots a month ago of methylcobalamin 2500 mcg and my neurologist is saying that it is sufficient for the recovery. However since last few days I have observed burning sensation along with tingling in my feet. As others in this group are saying that it will be followed by numbness and sometimes that is irreversible, I am feeling anxious.
Also there are times at night, especially when I spend some hours on my computer during my office work, I feed tremors or vibrations all over my body. Also sometimes I feel very weak [although the weakness has reduced substantially since the shots were given].
My question is this burning sensation common in B12 deficiency and can it go away with continuous supplementation. Also want to know about my tremors. I am currently in B12 sub-lingual 1500 mcg once a day. It is methylcobalamin of Indian pharmacy company.
really suggest that you speak to your doctor - if only to let them know what is happening.
it may be that the feelings are actually to do with nerves starting to reconnect but it can take a while for your brain to get used to signals coming through more strongly so it misinterprets the signals as warnings of pain, or the vibrations and tremours that you talk about.
Nerves do take a long time to heal and regrow. One of the effects of B12 is damaging the protective sheath around your nerves that insulates the signals and lets them flow properly, which is where tingling and numbing usually develop.
In the years before I was diagnosed I experienced a lot of problems with carpel tunnel like problems in my hands. It then subsided but came back for a while when I finally got the levels of B12 that I needed.... but it has now settled down a lot.
it is now around 4 months since I am taking supplements - methylcobalamin 1500 mcg daily. My doctor prescribed test for B12 which shows levels > 2000 mcg. I think I do not have any absorption problem and it happened due to strict vegetarian diet. Almost all my symptoms including tingling in feet, vision issues, energy levels has improved a lot.
Sometimes I feed very weak including some burning sensation all over my body. This goes when I take rest. I do not know what is happening. One of my friends who had suffered from B12 deficiency told me that he also had the same issues which improved after six months.
Please suggest what should I do in my case. Also the doctor has asked me to stop the supplements for next 6 months. I am afraid of the symptoms coming back again.
You had the symptoms of a B12 deficiency and started taking supplements, which alleviated those symptoms. So why on Earth does your doctor want you to stop taking them?
Would the doc suggest to an insulin-dependent Type-1 diabetic to try stopping insulin for six months?
Gautamn - in a bit of a hurry now so not got time to look at what was going on in detail so wouldn't want to give a hasty reply, though as fbirder says if the tablets were helping there isn't a problem with continuing though I suspect your GP may be trying to establish if it really was dietary or not and that would mean stopping the B12 sublinguals for a very long time.
gautamn - the high B12 levels are probably more to do with the injections than the sublinguals as my understanding from earlier in your post was that you were originally taking sublinguals only and these didn't actually do much to raise your levels. Sublinguals can play an important part in keeping levels high once injections have been administered and it may be that that is keeping your B12 levels high.
A significant number of people need their serum B12 levels to be much higher than normal after loading doses - it isn't quite clear why this happens but it seems that in some way the process that allows B12 to get into your cells becomes less efficient in these people meaning that they need much higher serum B12 levels to ensure that enough does get into your cells - like needing a lot of water behind a damn to ensure enough trickles over the top.
If your symptoms are getting worse then it may be that the sublinguals aren't helping enough with keeping your B12 levels high enough. The tests to check what is happening in your cells are ones that look at some nasty products that will build up if your body doesn't have enough B12 to recycle them into useful building blocks. However, they can also be raised by other factors so the tests need to be done with other tests that confirm that other things aren't going on. The tests are homocysteine (also raised by folate deficiency), and MMA (which can be raised by kidney problems).
I think you need to get your doctor to explain to you exactly why they want you to stop taking the sublinguals - eg what tests they would like to be able to run. You could ask for MMA and homocysteine tests, if your symptoms are getting worse to rule out a functional B12 deficiency (the most effective treatment for this is to raise B12 levels higher by more frequent injections).
Unfortunately it can take a very long time for all the damage from B12 deficiency to heal and getting the treatment right and the frequency of injections and supplementation correct when you need to keep levels really high post loading shots can be quite difficult and the best way to know what the frequency might be is to listen to your symptoms. Keep a diary of how your symptoms vary over time and see if that correlates to B12 supplementation. Please keep talking with your GP.
I am writing after a long time. I and thankful to you for replying all my posts and helping me in my bad times. I have recovered a lot after 3 months of treatment of B12 shots followed by sub-linguals for 3 months. Most of my symptoms have gone away after the treatment. My B12 level 4 months ago was above 2000 mcg level. I again had the test 2 weeks ago and the levels are still above 2000 mcg.
However I got my weakness issue back since last few days. The body seems to be very weak for few minutes and after that things comes back to normal. Also when I think deeply for some problem, I feel shivering in my body especially in legs and hands. I feel difficult to concentrate sometimes. I have discussed it with my doctor and she told that everything is alright.
I am confused what to do now. My doctor has stopped B12 supplementation since the levels are too high. Should I change my doctor and go to some other neurologist, or continue taking sub-linguals (against the doctor's advice). Please suggest.
if you are on supplements post shots B12 levels don't necessarily mean anything. If sublinguals work for you should be able to source sublinguals as vitamin supplements - without the need to for a prescription.
you could try changing doctor - though generally knowledge of vitamins and B12 is quite poor and the new one may not be any better, or you could see if you can education your doctor. A few articles/resources that you could share
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