Hi im new to this forum but im looking for advice to what im experiencing
For the last year and a half Ive been experiencing some of the symptoms like of PA without knowing of it. The symptoms have gotten worse as time has gone by leading to: extreme fatigue (even after sleeping 9 hours), restless sleep, mood swings, anxiety as the stronger symptoms. Also experience some symtoms more slighly such as: memory loss (forgetting names, or things a did in the previous days), feeling slow cognitively, aversion to bright light, restless leg syndrome increase (may not be connected)
So far I have I have been tested with: complete blood count, Hormone levels/ thryroid, sugars, STDs, hapatitis, with perfect results
Regardless 2 weeks ago searching for an answer I found that B12 deficiency was a possible issue. Im vegan but I do take B12, iron, protein etc, supplements which would outrule b12 deficiency and the I found about PA and the body's inability to absorb B12 properly.
I finally set an appointment with a hematologist and told him my concerns about PA. He asked for a normal blood count test which turned out everything within range. He told me since my red blood cells are normal size this immediately out-ruled anemia and therefore also PA. ( Is this true?)
Out of my worries he orders a normal b12 count and folic acid.
Result are as follows
B12: 413 pg/ml reference range 170-700
Folic acid: 16.8 ng/ml reference range:
I understand that 413 is not considered low. But I've read that out of the total count it can be composed mainly by inactive b12 therefore having a actual B12 defficiency. Is this true also?
Im getting desperate and would like to find a answer for what im experiencing therefore I would like to be 100% sure without a shred of a doubt that I dont have PA (Or that I finally know what's going on if I have it)
I would like to ask for your help with the following:
What are the test that I can ask my hematologist to perform in order to be 100% sure?
What can I tell him about about the recent results ive gotten in order to convince him that these ones dont rule out b12d or PA?
I appreciate any advice in advance
Also I apologize for my english writing since its not my native language.
Written by
izaldumbide
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The Intrinsic Factor Antibodies (IFA) may be used to determine whether you have Pernicious Anaemia (PA) - not to be confused with Iron Deficiency Anaemia.
Sadly the IFA test is unreliable in that it gives false negatives in people with PA half the time. So a negative result doesn't mean that you don't have PA. However, a positive result is a sure-fire, 95% certain indicator of PA.
You are correct that your serum blood test at 413 (considered "normal") only measures what B12 is swirling around in your bloodstream as a result of the tablets you are taking because of your Veganism.
Anyone at any age, can become B12 deficient. However, certain people are at an elevated risk. They include the following:
Vegetarians, Vegans and people eating macrobiotic diets.
People aged sixty and over
People who’ve undergone any gastric and/or intestinal surgery, including bariatric surgery for weight loss purposes (Gastric bypass).
People who regularly use proton-pump- inhibitors. H2 blockers, antacids, Metformin, and related diabetes drugs, or other medications, or infections such as h-pylori that can interfere with B12 absorption.
People who undergo surgeries or dental procedures involving nitrous oxide, or who use the drug recreationally.
People with a history of eating disorders (anorexia or bulimia).
People with a history of alcoholism.
People with a family history of pernicious anaemia.
People diagnosed with anaemia (including iron deficiency anaemia, sickle cell anaemia and thalassaemia).
People with Crohn’s disease, irritable bowel syndrome, gluten enteropathy (celiac disease), Pancreatic insufficiency, or any other disease that cause malabsorption of nutrients.
People with autoimmune disorders (especially thyroid disorders such as Hashimoto’s thyroiditis and Grave’s disease) Type 1 diabetes, vitiligo, lupus, Addison’s disease, ulcerative colitis, infertility, acquired agammaglobulinemia, or a family history of these disorders.
Some of the above have been "ruled out" but do you see yourself among any of the other "people".
If the cause is an absorption problem you need to find another way of replenishing B12. Most absorption problems aren't treatable.
You could ask your haematologist for a trial of injections to see if there is any improvement.
I am not a medically trained person but I've had Pernicious Anaemia (just one of many causes of B12 deficiency) for more than 47 years.
I wish you well.
By the way, your English is excellent and easy to understand
There is quite a wide overlap between people with low serum B12 , but no deficiency and people with 'normal' serum B12 with a deficiency. However, your serum levels are quite a way above the bottom of the range. Indeed, your levels are above the average for normal people.
It is possible to have a functional deficiency, whereby there is plenty of B12 in the blood but not enough gets into the cells. You can test for this by looking at the amounts of two chemicals in the blood. Methylmalonic acid and homocysteine are used up in reactions mediated by B12. If there is not enough getting into the right places in the cell then the blood levels of these two compounds will be raised. You should be able to get an MMA test done through your doctor. Or you can get it done privately medichecks.com/tests/methyl...
Yes, you most certainly can! My numbers were right in the middle of "normal" for many years even though I had ever increasing symptoms. Finally, I tested positive for Parietal Cell Antibodies, high Hcy and MMA. Started on B12 injections and am starting to see some improvement. I was lucky enough to have test results to prove PA, many do not and suffer needlessly all for the lack of single vitamin. You can have a functional deficiency and still test normal, as fbrider has said.
Hi @izaldumbide. As far as I know, the fact that you've been taking supplements (obviously you had to because of being vegan) will have skewed any B12 test results - it's why all sources stress that it's important to get all tests done before supplementation - so your B12 result may well be falsely high.
Your haematologist is also wrong about the size of your blood cells ruling out anaemia and therefore PA - On page 80 of PAS Martyn Hooper’s book, What You Need to Know About Pernicious Anaemia & B12 Deficiency, various studies are cited which have found that between 25 and 33% of those patients with either cobalamin deficiency or pernicious anaemia do not have macrocytosis (enlarged red blood cells).
It's also worth directing any medical professionals to the Pernicious Anaemia Society website where, for example it states that:
‘recently updated Guidelines on Cobalamin and Folic Acid by the British Committee for Standards in Haematology 5 state the following:
-The clinical picture is the most important factor in assessing the significance of test results assessing cobalamin status since there is no ‘gold standard’ test to define deficiency.
If your red blood cells are normal size and you have normal levels of homocysteine and methylmalonic acid are normal then it is unlikely you have PA. Your symptoms are also suggestive of various types of hormonal problems, some of which become more problematic during the transition to menopause caused by imbalances in estrogen, progesterone, testosterone and adrenal hormones DHEA and cortisol. Thyroid hormones are also thrown out of balance during this time due to excesses or deficiencies in estrogens and cortisol, in particular. Being a vegan amplifies these problems.
I suspect active B12 could also be in the normal range but I don't have a reference.
The only way to be sure is to (after getting all the blood tests done) have a trial of hydroxocobalamin jabs every 2nd day for several weeks. Improvement in symptoms indicates deficiency prior to the treatment.
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Post-treatment lab results -- interpretation help appreciated!
I think I have PA but my test results say otherwise? (& rapid increase in symptoms?)
Please can I have some advice - as I am struggling with the health professionals
