How serious is my PA? Is it advanced? - Pernicious Anaemi...

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How serious is my PA? Is it advanced?

dusk33 profile image
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Hi! I'm about to start my B12 jabs from Monday because as well as having most of the symptoms of PA, and two parts of my brain being damaged, through two TIA's in the past and years apart, my blood tests have confirmed that my Folate level is just 2.17ng/ml, B12 is 234 ng/l and I have an isolated elevated MCH of 32.2 pg.

Are any of these particularly severe (I think the Folate level probably is!) and also because I am having some neurological 'moments' is my PA, though just diagnosed, in an advanced stage?

I'm 40 and female if this is relevant.

Thanks in advance.

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Hi dusk33,

I believe your 2 tia's are very serious. Having low folate and or B12 def , besides B6 def, may well be of impact as these help keep homocysteine down , and high homocysteine can be associated with tia's, altogether high homocysteine is not good for you. If I was you I'd like to know my homocysteine levels..

Perhaps read this:

labtestsonline.org/understa...

Also known as: Plasma total homocysteine

Formal name: Homocysteine

Related tests: Vitamin B12 and Folate, Cardiac risk assessment, MTHFR, Intrinsic Factor Antibody

Why Get Tested?

To determine if you are folate-deficient or B12-deficient; to help diagnose a rare inherited disorder called homocystinurina; to determine if you are at increased risk of heart attack or stroke

When to Get Tested?

When a doctor suspects a vitamin B12 or folate deficiency or suspects that an infant or young person may have homocystinuria; when you have had a heart attack or stroke and do not have traditional risk factors, as part of a cardiac risk assessment

Your folate does not appear that low, but it depends on the ref range used for normal by your lab. My serum folate 2.1 at one stage (ref range for normal used by my lab Serum folate 2.9 – 16.9 ug/L). I got persribed 5mg folate tabs for 4 months and my serum folate roze over 24, so now I take one a week/2 weeks to stay stable with B12 injections. My homocysteine levels are good.

I realy can not say if your PA is in an advanced stage, only time and good treatment will tell how much recovery you will get from neurological problems.

An Active B12 test (The Holotranscobalamin II ) will be able to tell you how seroiusly depleted you may be at tissue level of B12, and so can an MMA test, for more info see this site:

gsts.com/new-tests.html

and:

active-b12.com/

This link below clearly states there can be a good serum B12 reading , but functional B12 may not be good still causing further damage so to speak, see:

ncbi.nlm.nih.gov/pubmed/191...

Functional vitamin B12 deficiency.

Turner MR, Talbot K.

Department of Neurology, John Radcliffe Hospital, University of Oxford, Oxford, UK.

We describe a case of functional vitamin B12 deficiency where the repeated measurement of a serum B12 level within the normal range led to delay in the diagnosis of subacute combined degeneration of the spinal cord, and possibly permanent neurological damage as a result. Failure of intracellular transport of B12 by transcobalamin-2 can lead to functional B12 deficiency but with apparently normal serum levels, and is suggested by raised levels of either serum methylmalonic acid or homocysteine, associated with low levels of transcobalamin-2. Such patients may respond to repeated high-dose injections of B12.

PMID: 19151237 [PubMed - indexed for MEDLINE]

This link may help understand more:

cks.nhs.uk/anaemia_b12_and_...

Interpret the results of the serum vitamin B12 test taking into account clinical symptoms and the following limitations [British Columbia Medical Association, 2006]:

The test measures total, not metabolically active, vitamin B12.

The levels are not easily correlated with clinical symptoms, although people with vitamin B12 levels of less than 75 picomol/L (approximately 100 nanograms/L) usually have clinical or metabolic evidence of vitamin B12 deficiency. In most people with vitamin B12 deficiency, the serum vitamin B12 level is below 150 picomol/L (approximately 200 nanograms/L).

There is a large 'grey zone' between normal and abnormal levels.

Reference values (and units) may vary between laboratories.

Clinically significant vitamin B12 deficiency may be present even with vitamin B12 levels in the normal range, especially in elderly people.

Rare cases of false normal vitamin B12 results have been reported in the presence of high titres of anti-intrinsic factor antibody in people with megaloblastic anaemia or subacute combined degeneration of the cord. Therefore, the diagnosis of vitamin B12 deficiency should also include evaluation of the person's clinical state and other laboratory findings [Galloway and Hamilton, 2007].

Women taking oral contraceptives may show decreased blood vitamin B12 levels because of a decrease in cobalamin carrier protein, rather than a deficiency state.

Vitamin B12 levels may be falsely low in pregnant women because of the increased plasma volume of pregnancy rather than actual deficiency of vitamin B12 [Galloway and Hamilton, 2007]. This makes it practically very difficult to diagnose vitamin B12 deficiency in pregnancy.

And:

cks.nhs.uk/anaemia_b12_and_...

Anaemia - vitamin B12 and folate deficiency - Management

What if a person is still symptomatic despite maintenance vitamin B12 treatment?

Seek specialist advice if a person's symptoms recur before the next injection is due.

Basis for recommendation

Some experts acknowledge that there is a small group of patients who report a recurrence of their symptoms earlier than 3 monthly.

CKS could find no guidelines or evidence on the management of this group.

Feedback from expert reviewers differs with regard to whether or not more frequent intramuscular injections of hydroxocobalamin 1 mg are required, and if they are, what regimen to suggest.

In the absence of evidence and expert consensus CKS suggest seeking specialist advice in this situation.

I also find this link very good , it shows you were the folate and B12 are used and how important other B vitrs are (it also shows how low methionine can be caused by low B12/ folate etc), see:

aacc.org/publications/cln/20 ... olate.aspx

Gene faults in B12 metab:

ncbi.nlm.nih.gov/pubmed/152...

ncbi.nlm.nih.gov/pubmed/221...

I hope this helps,

Kind regards,

Marre.

I hope this helps,

Kind regards,

Marre.

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