I’ve had all the classic signs of low b12 for about 18 months had 6 different drs involved and none really paid close enough attention to my symptoms which I think is typical of b12 deficiency diagnosis.
Anyway I had privet and nhs blood work done ,
My b12 came back low at 35.1 pmol/L
I was wondering what’s a good level ?
Also my transferrin is high as is my mch so englaged red blood cells. .
Does anyone know apart from low b12 what picture this is building with the other results factored im?
I make the assumption that as I’m lacking b12 my red cells have enlarged to increase capacity ?
Any advice welcomed , also if anyone can recommend a good haematologist I would welcome the advice.
If you can answer any part of these questions I will be greatful .
Regards
Sam
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Each CCG/Health Board/NHS Trust is likely to have its own local guidelines on treatment and diagnosis of B12 deficiency. I suggest you track down the local guidelines for your area and compare them with BSH, BNF and NICE CKS links above.
Vital to get adequate treatment if B12 deficient. Untreated or under treated B12 deficiency can lead to permanent neurological damage including problems with spinal cord.
Table 1 in above article is about frequent misconceptions about B12 deficiency.
Useful B12 book
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). BNF treatment info in above book is out of date. See BNF link for up to date info.
Lots of B12 info in my replies on the the thread below eg symptoms, causes of B12 deficiency, B12 books, B12 websites, B12 articles/documents and a few hints about dealing with unhelpful GPs.
In the first link above from Sleepybunny, it seems Viapath consider low active B12 would be anything below 70, with advice for results of 25-70 to check MMA. Methylmalonic acid links with B12 as part of the process - if MMA in blood is high, it means that it has built up because there is insufficient B12 in the boodstream. There are other reasons for MMA to be high, which would have to be ruled out by testing, but would provide confirmation of B12 deficiency if needed. MMA should, under normal circumstances, drop back fairly quickly to within normal range after B12 repletion - certainly after loading dose injections completed.
If you have not yet had an MMA test and have not yet had B12 injections, this could provide the second confirmation (if required) of a B12 deficiency.
Enlarged, immature red blood cells would also be a strong indicator - not all of those with B12 deficiency/PA have this, but you have mentioned high MCH in your post.
This, together with a list of your symptoms, could be enough for your GP to make a decision, but if not, MMA tests are available on the NHS - although easier for a haematologist to access. A GP can get a test done (mine managed it) -but would likely need to go through a major hospital lab. My GP had her request returned three times. Most GPs might well have given up by this point.
While waiting, you might want to have a look at the other links provided - particularly the medical guidelines for treatment listed.
Your reply says that your serum B12 is high, but in the next sentence you say that it is low. If you are self injecting (which it seems that you are) you can expect your B12 to be high, so I'm assuming you meant that your serum B12 result came back as high ?
I have had active B12 tested before - but this was arranged by a haematology consultant, not my GP. Recent self injections would also be likely to give you a high result, since it would be measuring the injected B12 in your serum.
Perhaps having your MMA (methylmalonic acid) and homocysteine tested would give you more to go on, if either come back raised. Again these tests can be more easily accessed by an NHS consultant, a haematologist probably, rather than your GP. But you will need your GP to refer you.
A copy of the first link in Sleepybunny 's reply might help you there, since it suggests with your result that your next test should be for MMA.
What does your GP make of your low active B12 result and high mch result ?
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