Who diagnosed your pernicious anemia or unexplainable blood test?

Anonymous
Curious what kind of doctor diagnosed your pernicious anemia?

I've had high HCV for years, with high B12 despite being near vegan, a chronic cough and low energy. My GP wasn't ever concerned despite my pressing, and she retired abruptly, so I have to find a new one. I asked my gastroenterologist, but she said to see a hematologist. My holistic doctor said she thinks it might be pernicious anemia, but she doesn't handle, and told me to get a new gastroenterologist. The hematologist needs a referral, but I don't have one. My mom had leukemia, so I'd like to see what these levels mean. I have low RDW and my homocysteine level has often been high. I've seen every doctor on the planet re the cough and nothing (not that it's related, but who knows).

Any advice welcome.
Anonymous
A holistic doctor? I think you are throwing your money away. Some people just cough more than others. Now you owe me $500.
Anonymous
I am not sure why your doctor would suggest pernicious anemia if you have a high B12 level. High B12 is normally not a problem.
Anonymous
NP - a falsely normal or high blood B12 level can be associated with pernicious anemia because anti-intrinsic factor antibodies can interfere with the blood test, leading to inaccurate results.

Following. My daughter has autoimmune disease with high B12, and pernicious anemia has been suggested as a possibility.
Anonymous
Pernicious anemia is, in fact, anemia. If you are not anemic, that could be coming in the future, but there may be another reason your MCV is high.

Elevated MCV can be B12 deficiency, or folate deficiency, alcohol use or a bone marrow abnormality.

For macrocytosis, go to a hematologist.

Low RDW is zero concern.
Anonymous
Anonymous wrote:A holistic doctor? I think you are throwing your money away. Some people just cough more than others. Now you owe me $500.


I saw her for acute sinusitis and she gave me antibiotics. I didn’t see her for the cough. She usually has same day appointments and is a great diagnostician. So easy.
Anonymous
Anonymous wrote:NP - a falsely normal or high blood B12 level can be associated with pernicious anemia because anti-intrinsic factor antibodies can interfere with the blood test, leading to inaccurate results.

Following. My daughter has autoimmune disease with high B12, and pernicious anemia has been suggested as a possibility.


Yes, she said I need the intrinsic factor test. Maybe if I see a new GP she’d take it seriously.
Anonymous
You can order your own -
https://www.ultalabtests.com/test/intrinsic-factor-blocking-antibody

Not a shill, I promise. My daughter has Hashimoto’s and I have been disappointed with the tests her endocrinologist orders (TSH and T3/T4, but no TPO or TgAb despite my requests because they aren’t necessary - except they are). So we have been ordering from Ulta labs and getting labs drawn at Quest.
Anonymous
If someone will order the Intrinsic Factor antibody, you should also get the antiparietal cell antibody test.
Anonymous
I was ultimately diagnosed by a gastroenterologist. My "symptom" was routine blood work showing a hemoglobin level of 5, so I had no trouble getting referred for all manner of tests. In my case the pernicious anemia results from autoimmune atrophic gastritis.
Anonymous
Anonymous wrote:You can order your own -
https://www.ultalabtests.com/test/intrinsic-factor-blocking-antibody

Not a shill, I promise. My daughter has Hashimoto’s and I have been disappointed with the tests her endocrinologist orders (TSH and T3/T4, but no TPO or TgAb despite my requests because they aren’t necessary - except they are). So we have been ordering from Ulta labs and getting labs drawn at Quest.


Does Ulta labs require the patient to be over 18?
Anonymous
Anonymous wrote:You can order your own -
https://www.ultalabtests.com/test/intrinsic-factor-blocking-antibody

Not a shill, I promise. My daughter has Hashimoto’s and I have been disappointed with the tests her endocrinologist orders (TSH and T3/T4, but no TPO or TgAb despite my requests because they aren’t necessary - except they are). So we have been ordering from Ulta labs and getting labs drawn at Quest.


Thanks so much! I'll probably do this to start while I get new doctors.
Anonymous
Oncology/hematology RN here. Get a heme referral
Anonymous
Anonymous wrote:Oncology/hematology RN here. Get a heme referral


From a GP or gastroenterologist? Nobody seems to feel it's in their purview, even with my mom's history of leukemia.
Anonymous
Anonymous wrote:Oncology/hematology RN here. Get a heme referral


Agreed. My PCP happily get me a referral when he could tell something was up but didn't know what.
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