PA and abnormal CBC, white blood cells, no symptom improvement

Hello,

I was diagnosed with PA 2 months ago and completed the initial loading B12 injections. My results show an instrinsic factor autoimmune issue and 2 gene MTHFR mutation. My B12 lab values are now normal but I still have neurological and other symptoms. Balance, confusion, sore toung, tingling hands, unexplained bruising, pins and needles on thigh where I had a very large bruise.

My most recent lab values show

Low WBC

High RDW

low neutrophils

High eosinophils

These lab values have not improved since the initial diagnosis and are getting worse.

Does anyone know how long it should take to feel better?

and

Are the neutrophils and eosinophils related to PA or could something else be wrong?

Thank you

KH

[Gambit62 Administrator]

what were/are your folate levels like.

persume when you say 2 gene MTHFR that means you have two copies of C677T. This affects your ability to methylate folate. You may need to up folic acid uptake, or you may find using a methylated form of folic acid helpful.

Without folate your body won't be able to process and use B12 effectively.

If you had macrocytosis that will take several months to clear - other symptoms vary depending on which of the processes that use B12 is involved.

[Hidden in reply to Gambit62]

What is macroytosis?

[Gambit62 Administrator in reply to Hidden]

red blood cells slightly larger than rounder than normal - this means that have a lower ratio of surface are to volume and makes them less efficient at picking up oxygen in the lungs and transferring it to cells where it is needed - the main function of red blood cells

[fbirder]

Agree with Gambit62 re folic acid. If you are homozygous (two copies for the C677>T mutation) then you may be one of the small percentage that benefits from methylfolate instead of folic acid.

What are your MCV and ferritin values? A high RDW means you have a mix of large red cells and small red cells. The former can be caused by loo little B12 and/or folate. The latter by too little iron.

[Polaris]

Hi Kehicks

Your GP should be treating your neurological symptoms of PA - until no further improvement - as per BNF/BCSH guidelines in the pinned posts on the right hand side of this site :

"The BNF advises that patients presenting with neurological symptoms should receive 1000 ug i.m. on alternate days until there is no further improvement."

You'll also see how important it is to have adequate treatment and what a difference it can make from the results of this Dutch survey:

cmim.org/pdf2014/funcion.ph...

" The need for quick and correct treatment is emphasised further by the fact that after a year of treatment only 4 % of patients are fully recovered. Fortunately half of the patients have experienced a lot of improvement in their symptoms after a year of treatment but there are still a lot of patients with remaining symptoms, who could possibly have recovered if their treatment was started promptly and adequately.

More than a year after the start of the treatment 25.7 % still suffer from serious to very serious fatigue. About 15 % still experience nerve pain and/or muscle pain and weakness.

Other symptoms that remain troublesome are concentration problems, memory problems, word finding problems and intestinal complaints."

PS. Other important information on blood testing that your GP may not be aware of is at the bottom of page 4 under, ' How is Response to Treatment Assessed', in latest BMJ research document:

cmim.org/pdf2014/funcion.ph...

[Hidden in reply to Polaris]

How do they test neurological symptoms? Is there something other than self report?

[Polaris in reply to Hidden]

You have already been diagnosed with having PA from the tests already done, Kehicks, so the GP should know that the neurological symptoms you've described are caused by the resultant B12 deficiency already beginning to cause damage to the myelin sheath surrounding the nerves.

GP should, therefore, treat adequately as already outlined in the BNF/BCSH guidelines already mentioned

You could ask for further referral to a neurologist meanwhile but the main aim is to obtain adequate treatment without delay to avoid any further damage...

I really hope all goes well for you - it might be as well to write or email your doctor beforehand and take someone with you for moral support to your next appointment if you think there may be difficulties.