results of 156

[JessB94-]

Hi,

I’ve just finished a course of loading does and had a blood test following which the receptionist has told me has come back as 156 and no further action required however my symptoms have been getting worse not better. Should I contact my gp again or just carry on until my next does in 3 months?

just spoken to a Gp and she doesn’t think my symptoms fit with B12 so wants to start looking at other things.”and examine me in person. My symptoms are extreme fatigue and tiredness, low mood, headaches, pins and needles and numbness in my hands, legs and feet and I have started forgetting things. Has anyone else experienced these symptoms? Should I be pushing for more b12 injections?

[Nackapan]

I would go back.I did .

I never made the 3 months

I went back on every othef day as severe neurological symptoms .

Not easy I know .

Strange you were tested again as levels shoukd be high.

Always useful to give measurement and range

[Narwhal10]

Hi JessB94,

Please read Sleepybunny’s very informative posts. If you have not already then consider being a member of the Pernicious Anaemia Society so you have access to correct literature.

Please get hard copies of your blood results from your Practice. It is worth keeping a symptoms diary. Many of us take a multivitamin and mineral because vitamin d, folate, iron and the other vitamin B’s work together.

They should not have re-tested your levels after treatment that’s from the British Haematological Society. A number on a screen does not saying anything about your symptoms.

Please get the correct information to pass to your GP because you do need to go back.

Best wishes

[Hockey_player]

What is the normal range for your B12 test? Most of us seem to have very high B12 (I have had it so high it was out of range). If you have PA, instead of testing, they should just keep giving you B12 injections for life.

[Orchard33]

What was your B12 before the loading doses? Your post loading doses B12 number seems rather low to me also. But your GP should know not to test B12 after loading.

[JessB94- in reply to Orchard33]

Hi Orchard33,

Before my loading doses it was 17

[Orchard33 in reply to JessB94-]

I'm sure you know that 17 is a very low count. Consider self-injecting . I can't advise further but it were me I would SI at least EOD for a while. It took a year from a count of 93 SI ing EOD for me to begin to feel better. And I have little resilience still against what life throws at me.

[B12life]

Jess your levels were and still are extremely low. Run Freon that doc and ask if anyone knows a doc near you here in this forum.

B12 deficiency is definitely at least one of your problems and with as low as you were,17, along with your symptoms you are critically low.

I was 190 when diagnosed. Had ALL the symptoms you complain about. Now I'm climbing mountains.

You need daily or at a minimum weekly very other day injections for a while.

B12 deficiency can be caused by not eating meat. Any chance you are a vegetarian or minimize the amount of meat you eat?

The answer will help me make additional suggestions.

[Cherylclaire Forum Support]

Was this by any chance an active B12 (HoloTC) test ? This measures just the active transcobalamin B12 and not the inactive holohaptocorrin B12. This inactive B12 can make up to 90% of the total, so this test would be helpful in giving more accurate information about what is happening in your blood. Sorry, I don't know the normal range given for this, but I'm sure someone else here can help answer that.

Usually (but not always) the initial blood test is a serum total B12 test, measuring both active and inactive B12 in the bloodstream. To make things more complicated, it can either be measured in pmol/L or more often ng/L. 1 pmol/L being equal to 1.355 ng/L.

To complicate matters yet further, ranges of what is considered "normal" vary from one area to another.

I was really lucky : my initial total serum B12 test came back at 196 ng/L with a local range of 197 ng/L to 771 ng/L. So barely under their limit - but since I was, I got my 6 loading injections and after that, 3-monthly maintenance injections.

Just like Nackapan , I also struggled and visibly deteriorated with the 3-month frequency. My GP restarted injections at 2 a week - which stopped the downward spiral, and after three months, I started to gradually improve.

If you have B12 deficiency with neurological symptoms, you are supposed to get every other day injections until no more improvement to symptoms can be gained, then and only then given a maintenance dose of 1 injection every 2 months. This is clearly laid out as medical advice for the B12 treatment regime to be given under these circumstances.

Having been told you have B12 deficiency, and treated with loading injections, there would be no point to measuring what has just been introduced. This is also clearly stated in the guidelines. 6 injections will not cure B12 deficiency.

There would, however, be every point in trying to find out whether your symptoms can be better controlled, what frequency you need to get that to happen, what maintenance frequency will enable you to maintain your gains and what caused your B12 deficiency in the first place.

I'd have a look at the medical guidelines : NICE (draft copy of the guidelines due to be published in March), BCSH (haematology), BNF (British National Formulary).

Also have a look at symptoms lists - try support groups like the Pernicious Anaemia Society for more comprehensive lists - you might find that you have a clearer picture of what being short of B12 really means.

All the symptoms you mention in your post will be familiar enough to people here.

[tomdickharry]

Your symptoms are classic B12 deficiency signs.

156 is too low.

You definitely need B12.