making sense of blood results..

[patmackfin]

I got my last three years of bloods from the nurse today when I went for my b12 injection.(It was suggested to me on here that I should to keep track of things).I was having symptoms when the first blood tests were taken in 2011(I kept asking them to test my bloods as I was convinced something was going on( I was right) I suspected maybe a thyroid issue as I had never even heard of a vitamin deficiency before.

Only my b12 levels have been tested since I started treatment in February( this is a waste of time I realize as they will always test high as injections have started)

The other tests suggest pernicious Anemia I was told.

I notice on this that my Ferritin levels are going up and my folate is going down.Is their any action I should be taking as far as extra supplementing or tests etc? also why is this happening?

Thanks in advance for any insight ( :

[Secondchance]

Hi

Yes it would be best to take methyl folate supplements to get best use of your B12, also a B complex.

[patmackfin in reply to Secondchance]

Thanks secondchance ,would 400mg or 1000mg daily be best?(jarrow?)

I appreciate your help.

[Secondchance in reply to patmackfin]

I took 400mcg with a B complex and my folate went from I think about 6 to over 20 in a few months. I now just take both around injection time and folate is in the teens. There are risks to too much folic acid so methyl folate is best as most bioavailability.

[patmackfin]

thanks so much ( :

[Gambit62 Administrator]

Serum folate may be falling as your body is using more folate to absorp and use B12 to correct damage that has built up over time.

Know I've read something recently about ferritin rising and links with B12 and B9 (folate) but exactly what the link is and how it works I can't remember. May be an indication of cell deformation due to the B12 deficiency ... If I come across the details again I'll provide a link.

[patmackfin]

Thanks Gambit62,

I am trying to learn as much as possible to get what I need to feel better.It is very confusing and overwhelming.Do you (or anyone) know what my intrinsic abs level(3.4) means? (Am I positive for intrinsic factor antibodies at that level,or negative?..Is 3.4 a normal level?)I can't find anything online.I know the ANAHOM is autoimmune disease.

If you can find that link you mentioned also ,it would be great.

Thank you so much

Patricia

[Gambit62 Administrator in reply to patmackfin]

Not an expert but my reading of intrinsic factor abs (=antibodies I presume) - is that the test has shown that you do have antibodies and hence have tested positive and do have pernicious anaemia in the true sense - an autoimmune response which has shut down the mechanism by which you absorb most of your B12 from your diet - or at least made it so inefficent that you aren't getting enough B12.

The stuff I was reading about high iron levels was in relation to MTHFR - which is a genetic defect that means that you aren't able to process B12 and folate properly to the active forms that are used at the cell level - so more of general reading than actually a link as such.

This may help a bit.

[patmackfin in reply to Gambit62]

Thanks for straightening the abs out for me ,I wasn't sure if it had to be above a certain level or something.

The doctor did say pernicious anemia,but the way he put it was that he thought it was "the most likely cause".I like to have the facts( as we all do on here).I don't know what I would do without all the advise I get on PAS. It will be interesting to see what the full blood test will show next time they do them after all these b12 shots...

thank you SO much

[dottireno]

Hi gambit62, I was told I didn't have Intrinsic factor for PA with level of 1.3 range was 0.0-9.9. I therefore presumed it had to be over 9.9 to be positive for PA? However, I know that 60% of people with PA will test negative for IF anyway. If anyone has any other insight into this please let us know. I am receiving b12 jabs every 12 weeks since 2011 but symptoms no better. Back at GP today to push for more tests.

[patmackfin]

I'm guessing that since it doesn't say negative like ANA titre and anti smooth muscle abs etc that it's positive.

I can't find a straight answer online though.

I get monthly jabs,which work out at every 5 weeks really.I was wiped out and almost back to square one with aches and pains,headaches and swooshing in my ears exhausted and weepy in the 5th week.I can't imagine waiting 12 weeks.You need to push hard with your GP or go private (or self inject)to get what you need.keep pushing,GOOD LUCK!

[patmackfin]

just found this dottireno..

southtees.nhs.uk/services/p...

[Polaris]

This film on treating B12 def. mentions that you should not treat with folic acid until the B12 levels are normal or it will affect cognitive function.

b12deficiency.info/films/

[patmackfin]

THANKS a million Polaris,

I will watch this again,over and over and pass it on to my family(the one that is bothered anyway) ( :

It has all the information I was looking for .

I appreciate it so much

[dottireno]

Thanks pat! When I have checked my level was actually 1.4 u/ml so that would make me 'equivocal'? Why then would the lab put negative? Does make me wonder if I need more jabs after all? Gp said she would run all the usual bloods again, same thing has happened every year for last 4 years. She mentioned fibromyalgia but I can't accept it is that and think its a copout by medical professionals when they don't know what is wrong. I'll get bloods done and post results. Thanks again x