Recent blood work

[CW12]

I was diagnosed 3 months ago with PA and have had two injections. my third is in 3 days. After the 2nd injection I have had signification improvement. My levels were 620 in my latest blood work (3 days ago).

The last day or so I am starting to feel symptoms (very minor) creep back in. Has anyone else experienced this with a level as high as 620?

maybe I am just starting to drop off. I am due to get a b12 injections in 3 days. originally my level was 220. I am so curious about peoples recovery. Did anyone have symptoms with normal blood levels?

[clivealive Forum Support]

Hi CW12 as I understand it the serum B12 test only measures what is swirling around in the bloodstream - not what is getting into the cells. Your "high" level @ 620 is because of the injection you have had.

I am not a medically trained person but have had P.A. for over 47 years.

I wish you well

[Gambit62 Administrator]

serum B12 is, as clivealive, a measure of what is going on in your blood in terms of how much B12 is there.

For a lot of people raising serum B12 levels kicks of a reaction that means that the process that transfers B12 from blood to cells become less efficient (and it also seems to make the processes that remove B12 from your blood so it is passed out in kidneys). As a result significant numbers of people seem to need much higher B12 levels post loading shots than before - mine need to be permanently over the top of the measurable range if I am to function.

After a loading shot your B12 levels will be well off the scale and then they will fall over time. How quickly they fall varies from person to person.

Would be helpful to know when the blood was taken in relation to last injection and how frequently you are having injections because, to be perfectly honest it sounds as if you probably need injections more frequently than you are having them.

The BCSH guidelines don't recommend testing serum B12 post start of treatment unless there is a suspicion that treatment isn't being followed. Though it isn't clear as to why this recommendation is being made.

[CW12 in reply to Gambit62]

My first blood test was in August... my b12 level was 220. I have had two b12 injections a month apart. My third will be in two days. My second blood test 620 was 3 months from my first.

[Gambit62 Administrator in reply to CW12]

so blood test was about 3.5 weeks from your last blood test.

suggest you keep a diary of your symptoms after the next blood test - when they start to come back is when you need your next injection - but quite possible that your doctor won't realise this.

Are you based in the states - just that treatment doesn't sound like a UK regime.

[CW12 in reply to Gambit62]

Yes I am in the states 😊. I have had two injections a month a part. No loading shots.

[Gambit62 Administrator in reply to CW12]

there isn't really much by way of standards in the US, the AAFP section on B12 does refer to the UK standards

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

but there are somethings in their advice that don't cater for the huge variation in the way people respond to PA.

You could try pointing your GP to the PAS website are specifically aimed at helping medical professionals improve the diagnosis and treatment of pernicious anaemia

pernicious-anaemia-society....

pvanderaa do you have any experience you can share as I understand you have more experience of coping with things in the States.

[CW12 in reply to Gambit62]

Thank you so much. I will take a look at the links

[EllieMayNot]

My B12 level was in the 600-650 range BEFORE starting injections and I had extreme neurological symptoms for years before being properly tested and treated. I have to go by symptoms not blood level. Most have to go by symptoms as blood levels, once on injections, are often highly elevated but meaningless.

[CW12 in reply to EllieMayNot]

Thank you. This post is helpful.