[Marlene]

Hi C&C,

I'm so sorry they neglected to rule out the simple things first. Sometimes I think they assume the worse and forget to look for nutritional issues. Mis-diagnosis occurs more often than we are led to believe. Also, try to get all the copies of your labs. You'd be surprised at what you catch that they missed or dismissed as important. So glad you went for a second opinion and MD Anderson caught it.

MD Anderson may have also checked these but in case they haven't, it's worth pursuing with your internist/GP: B12, folate, iron, copper, zinc, and D3 are the main nutrients to check for bone marrow issues.

Vitamin D - This should be in the 50 -70 ranges. If not, consider supplementing with vitamin D3 and K2.

Folate - if serum folate is high without any supplementation, then you may not be able to utilize it from food. This is easily taken of with an oral, bio-available form of folate. (not folic acid)

Iron - It's good to have a baseline. It may be high from transfusion so you may have to take measures to reduce it.

Copper - Low copper can also mimic MDS.

Zinc - low zinc can impact WBC where high zinc can impair copper absorption.

H.pylori bacteria - Get screened for this. This is the bacteria that causes ulcers and can also mimic MDS symptoms. This can also cause the autoimmune response to Intrisic Factor. It damages the lining of stomach.

Wheat/gluten intolerance can impact the stomach also. I would get screen for Celiac disease too.

Some people have methylation issue and need to use the bio-available forms of B12 and folate. It is the MTHFR mutation. Initial screening would be to check homocysteine levels and MMA levels. If high, it's an indication of either a deficiency and/or a conversion issue. Cyno B12 and folic acid need to be converted to a usable form by the body and if you have the mutation, conversion is impaired.

Finally, even with intrinsic factor issues, you can still take an oral B12. Jarrow makes a bio-available B12 called Methyl B12. 1000 mcgs and 5000 mcgs. It is now understood that the large doses of this form of B12 is passively absorbed in the intestine. B12 is very safe at these doses. You would not absorb more than 10 mcg. It's a good way to supplement the shots especially if you get them monthly, you may find that towards the end of the month, the B12 is getting low.

There's a lot of info on this scattered throughout the site. You can do a search to find older threads.

Marlene