In brief.....2 years ago my b12 level was 226 supplements of b12 raised the level to 2000, so I stopped them. [ Dr said I didn't need to take them anymore ] following year it dropped to 900, this year
[ 6 months ago ] it was 645, and 2 weeks ago it was 392. still within range
folate 14
ferritin 129
MCV 86
MCH 28
platelet count 134 [ 150-400 ]
haemoglobin concentration 121 [ 115-165 ]
Had text from surgery to say no follow up needed.
Question is should I go back on the b12 sublinguals before my levels drop any further, or maybe take a multi vitamin which includes b12
Any advice please.
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bowler
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Have you ever had further blood tests such as IFA (Intrinsic Factor Antibody) test, MMA, Homocysteine and Active B12.
Once you start supplementing again, some test results can be affected. The IFA test can help to diagnose PA (Pernicious Anaemia) but the test is not always reliable and it is possible to have PA if IFA tests are negative.
Do you know the reference range for ferritin in your area? Your haemaglobin levels were at the lower end of the range as well which can sometimes indicate lower levels of iron. It just seems interesting that your ferritin appears to be midrange but your haemaglobin is at the lower end of normal.
Thank you for your reply, yes I am in the UK. and the ferritin level in my area is [ 13.0 - 150 ] I haven't had any other tests. My GP wasn't too worried about my platelets as he said they wasn't dangerously low.
I would go back and question them - or ask for another opinion by another dr.
I was diagnosed with PA in 2011 and seen by 2 Drs in the practice over the years . In July I was seen by a new dr . Was told I never had PA !!! Injections have stopped .
B12 levels originally 115, then went in the thousands over the years . Now only 900 12 weeks since my final injection . Going to get yet another opinion .
Do you know what dose the supplements you took were - guess they were high dose.
For some people this does give them enough to overcome an absorption problem and build up levels again as 1% of B12 is absorbed passively outside the ileum. However, if you have an absorption problem this means that the mechanism your body uses to recycle B12 - storing it in the liver and then releasing it in bile through the ileum where it is reabsorbed - isn't going to be working so all that happens with the levels that are built up is that some is being used by cells but most is being filtered out through the kidneys and into your urine.
You were obviously deficient at one point. Unless it was clear that the cause of that deficiency was a lack of B12 in your diet the assumption must be that it was an absorption problem - which would explain why your levels are now dropping.
Unfortunately the serum B12 test isn't very good - tells you nothing about how you are metabolising the B12 (to methylated forms) and also tells you nothing about what is happening at the cell level. It is well established that the test results cannot be used on their own and have to be interpreted in the light of clinical presentation
However, GPs and even a lot of specialists really aren't aware of this and continue to act based on the test results on their own which brings with it the possibility of nerve damage becoming permanent.
I was supplementing on Swansons Ultra Methylcobalamin. B12 5mgs. a day.
Reading through your post I feel I may have an absorption problem ? as I do have gall stones, which affects the bile, I also have diverticula and irritable bowel, plus some other health issues which I wont bore you with. However all this is on my GPs records, but saying that, since my Dr. retired 2 years ago [ I had her for 28 years ] our surgery has been run by Locum's
[ I have probably seen 10 ! ] and all have different opinions. IF it is malabsorption [ I do have a good diet ] would the Methylcobalamin be sufficient as before, but just for me to keep taking it even if I get to a level of 2000 ? I just feel I'm not going to get anywhere if I go back to my surgery, so just treat myself.
Unfortunately B12D isn't generally on a lot of doctors radar so gets overlooked - the symptoms you mention are actually typical of B12 deficiency in general but joining dots really isn't something GPs excel at ... even less so specialists.
There aren't any downsides to having high B12 so I would go back to using the high dose oral if that works for you.
I didn't really get anywhere with GP so do the same as you so really can't blame you over that. Only down side for you is that B12D as an on-going problem isn't going to be on your medical records - is on mine but I need a lot more than the normal regime which was where I parted company with GP - wasn't caring just lacking in knowledge.
I have to have regular B/tests for my GCA/PMR so I will make sure when I next go that they know I am taking B12 and for it to go on my records.
I did post on here a few months ago re a B/test I had stating Acanthositosis [ spelling ] which I wasn't quite sure of, and neither was the locum !! but I since found on google that it is a form of anaemia, however, the GP said for me to have another B/test which I recently had but this time it didn't show up, very strange. I have started back on my B12 sublinguals so I will see how it goes.
Most importantly, are you having symptoms of b12d? I would want to find out why levels are dropping. Some people are symptomatic even when their levels are very high. The serum b12 test only measures what is in your blood, not what your cells can use. Don't supplement again until you have got some answers. The supplements will skew the readings and you will have very little evidence to convince your doctor that you need more help.
Never completely stop, just cut down the amount you have
You don't mention how you are feeling, or if you have any symptoms.Please go to the Pernicious anemia/b12 group on F.B. as levels that fall within the "normal" range are often to low, if you are having symptoms.
Yes like you say all symptoms of being deficient, the same symptoms I had 2 years ago, hence my self medicating on B12. Perhaps I should join F/B as it's another avenue to go down, although I do find the people on this site very informative.
I find it hard to understand why you were told to stop supplementing. Usually, if our levels are low to begin with, it means we have to keep being treated. It is often because our bodies can't absorb B12 any longer. MariLiz
because my B12 was in range at 226 the Dr. said I didn't need treatment anyway !!! I treated myself with methylcolbalamin so I suppose I shouldn't have taken any notice of the Dr. and carried on, but being bit naive at the time and not knowing much about B12 deficiency I thought he was right to say stop as my level had reached 2000.
If you felt well supplementing then I would do that, however treating this is more complicated then just adding a vitamin. What are your iron and folate levels, as you need these to be optimal to convert the b12 and get it to the tissues. There is no high level of b12 that is dangerous, and in fact if you were having injections most Drs. don't even test it , after the start of treatment. A level of 226 is very low, and you have nuerological symptoms, so depending on what country you are in you should be getting loading doses every other day. If you would like to get more informed watch Dr. Chandy on you/tube. A great Dr. in the U.K who almost lost his license helping people with this..please let me know how you get on..have a great day.
I went back to see but I would need to see the reference ranges as they may differ depending on where the tests were done. I hope you watch some of the videos on Youtube..that is what started my healing and then the F.B. group. I know what you are feeling..it can get so much better
I have read about Dr. Chandy when I got in touch with the b12d site 2 years ago. I think it's the same one ? it was that site that told me about sublinguals. I don't feel too bad, not like I did when my level was 226 it's now 392 so taking the sublinguals hopefully will raise it back up to 2000 again, I will then stay on them.
Your folate is quite low. Look up folate deficiency. B12 needs good stores of folic acid to get it into the cells.. If you are taking b12 without adding folic acid, the result will be a folate deficiency, and that will have many of the same symptoms. You would need five mgs a per day for three to four months and then one mg per day.
It's extraordinarily unlikely to do you any harm if you go back to the sublingual supplements. And you won't have to worry abut levels dropping too low. Unless they made me unwell, I'd take them.
I have gone back on the sublinguals as they did raise my levels from 226 to over 2000 2 years ago, so they seemed to be doing the job, it was probably my fault stopping them [ told by GP that I didn't need them anymore ! ] Like you say I don't have to worry about the levels dropping any lower, and they don't seem to give me any side effects, and rather them than having to have injections.
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