Abnormal B12

[Cordon35]

Hi all,I had a blood test about 2 weeks ago,which was abnormal.My gp repeated the blood test last week.This also came back abnormal.This is B12 sorry.My GP's secretary rang me and said my doctor will ring me tomorrow.what is likely to happen next?Many Thanks.Kev.

[Cristjams]

Well abnormal B12 usually refers to a low or deficient level of B12, as one can never really have too high of a level since it is a water soluble vitamin. Chances are they will want to begin loading doses of injectable B12. This usually means a 1 mL injection every day for about two weeks or so. Then after that, they will likely set you up on schedule for one injection every two months (or monthly if your levels indicate a need). If your low B12 is due to disease line pernicious anemia or malabsorption, you will likely need injections for the rest of your life as you will never be able to properly absorb it from diet. If due to dietary causes, such as a vegan lifestyle, they will encourage B12 dietary supplements.

[doityourself in reply to Cristjams]

I am interested to read that you write ...every two months or 1 if.... when so many of us are restricted to every 12 weeks.

what makes uou think Cordon will be offered this frequency?

[fbirder in reply to doityourself]

Cristjams lives in the US, where the normal B12 injections are of cyanocobalamin, which requires more frequent jabs. Hence the discrepancy.

[Gambit62 Administrator in reply to doityourself]

treatment regimes vary from country to country - in Germany maintenance frequency for hydroxo is 1 month regardless of neurological symptoms.

countries using cyanocobalamin tend to also go for monthly maintenance. In general hydroxo is retained longer than cyano but that is a generalisation and there are significant numbers of people who actually retain cyano longer than hydroxo.

Unfortunately in the UK we seem to be caught in a regime that owes more to bureaucratic penny pinching than any scientific rigour with the result that so many people find themselves chronically undertreated by a 3 month maintenance regime.

[doityourself in reply to Gambit62]

Ah that explains thanks. and yes I have experienced these discrepancies. I live in Germany for a year. what a different attitute!

[Cristjams in reply to doityourself]

Sorry, yes... I live in the US where the doctors are much more liberal in treating B12 deficiencies. In fact, at the beginning of my treatment and lasting the first three years, I was prescribed injections every two weeks. I know this is not the norm in other countries. Such a shame, as it is a fairly inexpensive treatment here. It literally changed my life. The symptoms I had before diagnosis led me to think I losing my mind. I was in a pretty desperate state. I never knew a simple vitamin could make such an impact.

[sbotwright in reply to Cristjams]

Hi there, you seem very knowledgeable on this subject. May I ask where you .live as my doctor will only give me injections every 3 months and I feel I need them more frequently. They even cut them down to annual injections at one point after a blood test. I had to fight to get it reinstated to every 3 months.

[Sleepybunny]

Have you had an IFA (intrinsic Factor Antibody)test? This can help to diagnose PA (Pernicious Anaemia although IFA test is not always reliable.

Page 29 of the "BCSH Cobalamin and Folate Guidelines" is a diagnosis flowchart that shows the process UK doctors should follow with someone they think may have B12 deficiency including when to order an IFA test. Page 8 of the same document gives details of UK B12 treatment for those with B12 deficiency both with and without neuro symptoms.

More info about B12

1)Pinned posts on this forum

2)

pernicious-anaemia-society....

3)

martynhooper.com/

4)

b12deficiency.info/

5)

b12d.org

6)Book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

7)Book "Could it Be B12" by Sally Pacholok and JJ. Stuart

8)bmj.com/content/349/bmj.g5226

I am not a medic just a person who has struggled to get a diagnosis.

[MariLiz]

Loading doses of B12 in the UK are six injections over a fortnight. Then after six weeks another blood test to see if you are retaining the B12 you've been given. If you still have neurological symptoms the injections should continue at a higher frequency, otherwise they go to three monthly.

I have managed to persuade my GP that I need them every six weeks. This wasn't easy to do, but she agreed to trial me on more frequent injections for about six months first. I kept a list of improved symptoms, and she agreed to continue with the more frequent injections.

Your doctor may wish to test for intrinsic factor to prove it is pernicious anaemia. This isn't a completely reliable test.

[wedgewood in reply to MariLiz]

No , some health authorities only give 5 loading doses .( Gloucestershire )

[Gambit62 Administrator]

Cordon, would strongly recommend that you get copies of the two blood test results. Other things to look out for are your folate levels. Most likely is that abnormal is low. Generally gps don't look for high B12 and, in the UK, it isn't generally flagged up as a problem area. However, raised B12 in the absence of supplementation can be a marker for some other conditions - but its one that catches them very early if it is that.

Look through the pinned posts and look through the symptoms of B12 deficiency. Mark everything that applies symptom wise even if it has been going on for years - a full blown deficiency can take years or even decades to develop - and monitor how each does through the loading shots and beyond. B12 is used by a lot of systems in the body and if you have been deficient for a long time they will all correct at different rates - it may be that some don't seem to improve for a long time.

If you are UK based and have neurological symptoms then the loading regime is 3 shots a week until symptoms stop improving - with a review at 3 weeks. without it is just 3 shots for 2 weeks. Maintenance would be 2 months if neurological symptoms and 3 months if none but as you will see from the other discussion thread this often isn't enough and people find symptoms return much earlier.

Getting the right treatment for you can be quite difficult.

[sbotwright]

You will get B12 injections every other day for 2 weeks then an injection every 3 months thereafter for the rest of your life. Hope this helps. Sandra from Scotland

[Binky68]

Cristjams - high b12 is also an indicator of low active b12, the information you gave isn't correct.

[Cristjams in reply to Binky68]

Oh wow, I wasn't aware of that. My neurologist only explained to me that excess B12 will be excreted through urine. Perhaps he meant excess from my injections that my body didn't absorb. It was about 8 years ago. I remember him saying at the time that there wasn't really an upper limit to to B12 blood test.