My rheumatologist looked at my b12 levels last year along with some other tests and diagnosed me with PA.
My family doctor disagrees because my b12 was at 319 and he says that is within normal ranges. I do test positive for the gastric parietal cell antibody 35.1
but he said my Methylmalonic acid and Homocysteine should be high as well, but it was 81, and that is actually too low. I'm negative for the Intrinsic Factor Blocking Antibody but positive Anti-GPA. How does that make sense?
Did do an endoscopy and that showed nothing some history of ulcers.
So now I have two doctors in disagreement. My family doctor will give me monthly B12 shots but says that they will not do me any good since in his opinion my b12 is not low, but it wont hurt me so he will just do it.
As far as my symptoms go I have the whole list and all of the less common ones. The vertigo, the burning tingling legs and feet! And the tired that no amount of sleep can cure. It's the kind of tired that you just cannot get away from and has frequently caused me to be home bound as well as severe depression. I will admit that I do not make it to my doctor for my shots as regularly as I would like
Anyone else have conflicting test results like this?
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Tigerlilly81
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Yep. I even have conflicting results on the same test given at two different times. Like you, I tested positive for parietal cell antibodies. The doctor who ran that test thought she only needed to run either that test or the intrinsic factor antibody test, so my IFA wasn't tested at that time. Based on the positive GPA, I was told I have PA. However, a year and a different doctor later, both the IFA and GPA tests were run and I was negative on both. So I was told I don't have PA after all. Based on how well I have responded to B12, I think the second opinion is bogus and the first was correct. Unfortunately I am left in diagnostic limbo because of my conflicting test results. So I focus more on getting adequate treatment than on getting a solid diagnosis.
The truth is that neither test is 100% reliable. Also parietal cell antibodies can be caused by something other than PA, but having them does indicate that your body is attacking the cells that line the stomach and that will hinder absorption regardless of the actual source of the problem.
elevated MMA and homocysteine are symptoms of B12 deficiency. raised levels are useful tools in diagnosing a B12 deficiency.
PA is just one possible cause of a B12 deficiency - there are others but the treatment is the same and the symptoms of PA are the symptoms of the B12 deficiency it causes.
When were your levels measured at 319 - if it was after you started supplementing then actually it looks rather on the low side for someone who is having shots and would imply that you actually need the shots more frequently. What matters with B12 isn't the amount in your blood it is what is happening at the cell level and there are a few things that can cause problems with B12 getting through to the cell level even when your levels in blood are high. I find my symptoms return within 24 hours of a shot even though my levels are always astronomic.
Good that your GP is prepared to treat on the grounds that it won't do any harm.
False normal B12 results and the risk of neurological damage (U.K. N.E.Q.A.S Haematics.org.uk
)
“In the event of any discordance between clinical findings of B12 deficiency and a normal B12 laboratory result, then treatment should not be delayed. Clinical findings might include possible pernicious anaemia or neuropathy including subacute combined degeneration of the cord. We recommend storing serum for further analysis including MMA, or holotranscobalamin and intrinsic factor antibody analysis, and treating the patient immediately with parenteral B12 treatment.”
You should continue to receive your injections until there is no further improvement.
Your GP should be following and treating your neurological symptoms until no further improvement as per the BNF guidelines:
"The BNF advises that patients presenting with neurological symptoms should receive 1000 ug i.m. on alternate days until there is no further improvement".
Failure to do this, risks seriously endangering your health further and one wonders why the specialist advice is being ignored!
Re. MMA and his homocysteine, very few GPs understand the symptoms of PAand you may want to write or show your GP the following extracts from the latest BMJ research document (link given below):
Page 5 - under Methylmalonic Acid
"An increase in methylmalonic acid level is an indicator of vitamin B12 deficiency in tissue and this persists for several days even after replacement is started.2 Measurement of methylmalonic acid may be the most representative marker of metabolic vitamin B12 insufficiency.".
Re. Bottom of page 4 -
"How is response to treatment assessed?
Homocysteine or methylmalonic acid should normalise during the first week of treatment. Failure to do so suggests an incorrect diagnosis, unless renal failure or other causes of increases in the metabolites coexist. Cobalamin and holotranscobalamin levels are not helpful because they increase with vitamin B12 influx regardless of the effectiveness of treatment,24 and retesting is not required."
Vitamin B12 deficiency is a common but serious condition
Clinical presentation may not be obvious thus leading to complex issues around diagnosis and treatment
There is no ideal test to define deficiency and therefore the clinical condition of patients is of the utmost importance
*There is evidence that new techniques such as the measurement of holotranscobalamin and methylmalonic acid levels seem useful in more accurately defining deficiency
If the clinical features suggest deficiency then it is important to treat patients to avoid neurological impairment even if there may be discordance between the results and clinical features "
The above BMJ research document is supported by many research papers and is peer reviewed.
" Starting straight away with treatment is essential, as is the continuing treatment in order to give the body enough B12 to fully recover. Therefore it is essential that patients are no longer exposed to the real danger of irreversible symptoms because of the imaginary fear of overdosing."
"After a year: 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."
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