For Sharon About Anemia

Discussion in 'Fibromyalgia Main Forum' started by rockyjs, Jan 19, 2006.

  1. rockyjs

    rockyjs Member


    You mentioned having unresolved anemia in one of your posts and I wondered what types of tests you've had done. I've been anemic most of my life, but the past year has been the worst with my hemoglobin now at 6 and ferritin running 0-3.

    We've done all the autoimmune and enzyme testing (G6PD, Coombes, etc) and they were all fine. I am getting near menopause but even during years when I had hormone imbalances that caused me to stop having periods I was still anemic. I'm sure it doesn't help, but I don't think bleeding is the cause.

    I've been thoroughly tested for celiac, occult blood and all that stuff, and still no answer. The doctor said it looks like iron deficiency anemia and yet the more iron I take as a supplement the sicker I get and the lower my hemoglobin drops.

    We have concluded that I have a rare genetic condition called porphyria and the type that runs in our family does seem to be associated with anemia. There's a defect in the enzyme that incorporates iron into hemoglobin. After I had a recurrence of Epstein-Barr along with West Nile my levels really began dropping and the porphyria symptoms kicked in (abdominal pain, sensitivity to sun, reactions to foods containing sulfur, etc).

    I would be interested in keeping in touch over this. I don't want to get a transfusion - it's actually quite dangerous with an iron deficiency. I'm trying to work in more meat which I didn't tolerate for a couple of years because of brain lesions...that's much more readily absorbed than other sources of iron. I ordered some dessicated beef liver (YUK!) and will give that a try. My B12 and folic acid levels are actually abnormally high. It's quite a mystery.

  2. rockyjs

    rockyjs Member

    I'm glad you mentioned that the hysterectomy didn't help. I really don't think that's my problem either and I certainly don't need to add the stress of surgery to my body's load.

    I have been very frustrated with my hematologist which is why I went to a gastroenterologist instead. He seems intent on finding out the cause, but for now we're baffled.

    I did read that Epstein-Barr can cause anemia and I had an acute recurrence along with the West Nile, but since I've had at the best mild anemia all my life, I think there's more to it.

    I came across a study a while back stating that some people actually have a defect in the ferritin gene so that they can't store or transport iron and they get anemic very easily. If I can find anyone who's currently researching that I'll let you know.

  3. bunnyfluff

    bunnyfluff Member

    That is my story! Low iron forever no matter what suppliments I took, had a hysterectomy, etc, still no help. Ended up so weak I was passing out and had to have a transfusion. Ran every test....mostly looking for bone cancers, etc. For me it turned out to be Celiac's, but I had to almost die before they figured it out. Hope it doesn't have to go that far for anyone else. It was not fun, and I almost lost my life, my kids almost lost their mom, all because of undiagnosed food allergy!!

    It can happen anytime, to any one. People in the "old days" didn't know, so don't assume you will know if it is in your family gene pool. Anything can kick them up.

    I only hope I can help one person not to have to get as sick as I was before they get the right answer.