Please help understanding my blood test results before visiting my GP

[helsbells80]

Hi everyone, I was wondering if anyone can help me with my blood test results please? I've got my GP appointment on Friday and I want to be fully prepared. 

I was diagnosed with PA in 2001 and was put on b12 injections, where my health definitely improved, but in 2005 I changed gps and my new GP decided to stop my b12 injections and monitor using the b12 serum test. My health definitely deteriorated after this, leading to me starting with a chronic illness in September 2011. After numerous test for autoimmune diseases I was finally diagnosed with fibromyalgia and CFS in 2013.

I have always thought my b12 levels must be normal as the b12 serum was coming back normal, but after reading info from on this website,  I realise my Fibro/CFS symptoms map b12 deficiency symptoms. And my history of b12 deficiency seems like something I need to investigate.

I've had this tests done in the paste few weeks and would really appreciate any help?

Do you think there is any chance I could be b12 deficient with these results or maybe I lack enough iron and folate to process the b12 correctly?? Any help would be much appreciated 

😊 thank you xxx

[Gambit62 Administrator]

On the face of it your B12 looks okay but ...

ARRRRRRGGHHHHHHH!!!!

What needs to happen to make GPs realise that you cannot treat a B12 deficiency by looking at serum levels?

There is a lot more to it than the levels in your blood, for instance a significant number of people actually respond to high levels of B12 in their blood by producing an protein that binds to the B12 in your serum and stops it being passed into your cells - so lots of B12 in your blood but very little, if any actually getting through to your cells - known as functional B12 deficiency.

Although some people do seem to cope with less more frequently generally the way of treating this response is to keep levels of B12 really high so there is more B12 in the blood than the body can create protein to bind so some does get through to the cells.

Your folate is on the low side though still in range - this could indicate that you are using a lot of folate to try and process B12 only for it to go no-where because of the reaction mentioned above.

Give this article to your GP

bloodjournal.org/content/bl...

may date back to 1970s but it is talking about the phenomenon described above so scientific evidence that it isn't just a google fantasy

You could also try getting your GP to look at this site aimed at educating medical professionals on B12

pernicious-anaemia-society....

and point out that if they check the BCSH and NICE guidelines these will make it clear that treatment after an absorption problem has been diagnosed should not involve regular blood tests.

[clivealive Forum Support]

Hi helsbells80

I am not a medically qualified person - just someone who has "lived" with P.A. for 45 years.

Surely, if you were "diagnosed with PA in 2001 and was put on b12 injections" whatever was your new GP thinking when he "decided to stop my b12 injections and monitor using the b12 serum test". 

Doesn't he know that P.A. is for life as too is the need of b12 injections for the rest of your days? 

Get him to check your 2001 diagnosis and if nothing else ask him to "Google" Pernicious Anaemia and read up on a subject he apparently seems to know nothing about.

I'm so angry for you I could throw all my toys out of the pram.

I wish you well for the future.

Still "clivealive" coming up to 75

[MariLiz]

Your GP is so wrong to stop your injections, and further testing of B12 once we are on injections shouldn't apply. Contact the Pernicious Anaemia Society for their advice. 

Wishing you well. MariLiz

[fbirder]

If you were diagnosed with PA (i.e., you had positive results for anti-Intrinsic Factor or anti-Gastric Parietal Cell antibodies, or you had a gastroscopy that confirmed gastric atrophy) then you've got PA for life and you need jabs - for life.

My summary document has sections on the need for doctors to treat symptoms, not numbers, and that any further testing is pointless - frankhollis.com/temp/Summar...

[helsbells80]

Just to give you an update....

I really thought I would get something out of the appointment I had with my GP on Friday. I had all my blood test results and facts &  figures printed from the PAS, bcsh 2014 update and nhs website, but he said that GPs have never been told about the flaws in the b12 serum test!!! And that as mine has never been below 250, he isn't concerned!!! I even quoted from the nhs website and showed him some printed info sheets from the PAS, but he said everything from the PAS website was biased and everyone on that website has tunnel vision!!! 

Grrrrrrrr!!!!!

He did say he would look to understand how I was diagnosed PA in 2001 at my previous doctors, and then try to decide why I was taken off the injections in 2005. But I'm worried he's just going to cover his partners a*se, as he was the one that did this!!!

I'm soooooo angry

I took my husband and he asked "isn't it worth just trailing the b12 injections as I responded so well last time" but he said he wants to understand the PA diagnosis!!

Does anyone have any thoughts or advise??