B12 dropping

[Shashapoo]

I was at 2000 level in October when B12 was discontinued. Since then (8 months) I have dropped 1521 points and having neurological symtoms. I requested MMA test, and received labs today which shows it wasn't done!! This is a new internist for me and I am disappointed. My result of B12 is 479.what should I do? I did start sublinqual back for 9 days..

[Gambit62 Administrator]

would be able to know what country you are in - guessing the states as you mention an internist. You really need to get them to redo loading doses and stop trying to use serum B12 to treat you thereafter but go by your symptoms.

This is a link to the AAFP website section on B12 deficiency

aafp.org/afp/2017/0915/p384...

it contains some of the usual rubbish from over-generalisation (there just is too much variation in the way people respond to B12 to make generalisations particularly useful) but it also includes a link to the BCSH guidelines on diagnosis and treatment of cobalamin and folate disorders which state that serum B12 testing isn't desirable after initial treatment unless there is reason to believe that treatment hasn't been followed. It also explains the limitations of the serum B12 test in terms of accuracy. Basically it is a test that looks at what is in your blood but doesn't tell you what is going on at the cell level. On one level this should be okay except that many people seem to respond to elevated serum B12 in a way that makes the process that gets B12 from your blood into your cells much less efficient meaning that people who have had loading doses often need to maintain much higher levels of B12 than the normal range.

You can access the BCSH guidelines here

onlinelibrary.wiley.com/doi...

though this link doesn't always work outside the UK

Suggest you drop your internist a note sharing this information

[Shashapoo in reply to Gambit62]

Thank you so much for the information and links!

[Sadie97]

I don’t understand how PA ppl get their levels so high. I’ve been on b12 injections every 2 weeks for quite a few yrs as I have PA and can’t get my levels past 400’s.

[Shashapoo in reply to Sadie97]

Sadie, I do not know how mine got so high! I had been doing sublinqual for years. I used to do the injections at first. The last time my B-12 level was checked was in 2014 with a level in the 800's. During this time it got to 2000 or more. I can't get anyone to go the further mile in helping me since I believe I have malasorption issues (gluten intolerance, thyroid issues, Gerd etc.) The Medical Doctor's are in too big of a hurry, and don't listen. One MD told me that my original level of 168 was normal!!

[Gambit62 Administrator in reply to Sadie97]

Sadie97, your levels immediately post a shot will be off the measurable scale and then fall over time as excess B12 is removed from your blood by your kidneys and passes out in your urine. You are obviously at the fast end of the kidneys removing B12 so by the time B12 is being measured after a shot you have already removed most of the B12 from your blood.

The reaction that Shashapoo seems to have, which makes the transfer from blood to cells less efficient, also seems to bind B12 in the blood in such a way that it significantly slows down the removal from the blood - hence much higher levels for a much longer time.

To be honest serum B12 isn't a useful test post loading shots unless it comes back low - as seems to be the case for you, meaning that you need B12 shots more frequently - the only real way of knowing how frequently is to go by your symptoms.