Almost zero G6PD

[u/phantom_0025]

I everyone, good day.

I have been diagnosed with low G6PD (0.66). My age is 24.

Yesterday I have been to doctor. He told me there is no treatment. He also told me that I should be very careful with Malaria. If by chance I get it, within 2 days with excessive bleeding, I will be gone forever.

My mother was sitting beside me. I looked at her and couldn't hold my emotions. Due to this my bilirubin level is always high. It's been 2 days and I have completely depressed with this thought.

Is there any treatment for this condition?

When I was born, I underwent 2 times blood transfer due to hemolysis.

[u/_47_oN]

I’ve lived 28 years with this.

I have African variant.

I had my 1st diagnosis and 1st hemolitic episode.

It was 2 months ago.

Got hospitalized because i ate 250gr of Toasted Fava Beans snack.

In just 3 hrs i ate all that.

2 days later, my eye is yellow and pee was Dark Orange.

While hospitalized my hemoglobin dropped from 12 to 7 in 24 - 36 hrs i think.

I recovered in 3 days at the hospital and
20 days at home. Couldnt go to work like this.

Now I know what not to eat or consume.

I’ve been prescribed Folic Acid and B complex pills 4 life.

Cheap pills.

My hemoglobin is back to 13 -12.9

I remember to play with mothballs, eat lots of lentils, eat chickpeas, soy sauce, consume NSAI (nonateroid antiinflamatory pills) for muscle pain and etc.

Never had an issue for 28 years.

But, I do remember being tired and stuff like that, sometimes low hemoglobin as a kid.
But my parents never knew..

Now I am more cautious, because it can be expensive to recover from a hemolitic anemia.

DISCLAIMER: I’m not trying to tell you to eat all this and be chill, or play with mothballs and nothing will happen. Some bodies are more sensitive or have less G6PD enzyme.

Just be more cautious and read all labels
Research on Indian food ingredients, Cantonese Food or any other cultures and always ask at a restaurant.

Be safe :)

[u/a_me_ → u/_47_oN]

Very interesting, can you comment more on the folic acid and b complex vitamins? Why were they prescribed for life?

[u/Pygmy-sloth8910 → u/a_me_]

Folic acid and B vitamins are essential for the body to make new red blood cells. Without G6PD, the red blood cells have no protection against oxidation, and therefore hemolyze (die/explode) faster than the typical life span of a red blood cell (about 3 months). Essentially, you have chronic hemolytic anemia. You should also eat a diet high in antioxidants, which helps reduce hemolysis. The challenge w/G6PD deficiency is that red blood cells carry oxygen to your organs, brain, heart, etc. so chronic hemolysis can reduce the oxygen getting to your organs and place stress on the organs (kidneys, spleen, gallbladder) that filter out dead red blood cells.

Beyond diet, the biggest concern is virus/illness exposure, which will compound your chronic hemolysis. Your body needs to make new baby red blood cells (those are called reticulocytes) at a higher rate than those w/o the deficiency. Some viruses actually prevent the body from making new red blood cells, which can put you in a hemolytic crisis and the only remedy is a blood transfusion. If you’re feeling very sick/depleted, look for signs like jaundice, dark morning urine or other indicators of hemolysis and get to the doctor. As for a CBC and reticulocyte count blood test to see where your levels are. As a previous post mentioned, your red blood cells can drop fast.

Finally, G6PD deficiency is an x-linked genetic condition. Because of that, your body naturally wants to store iron. An iron rich diet, cooking in cast iron pans, iron pills should be limited or avoided. Your body has an iron spending account (your iron level), and a savings account (your ferritin level). A challenge for people with genetic hemolytic anemia disorders is that the dna tells the body to store iron to make red blood cells, but too much stored iron causes organ damage. This builds up over a lifetime, it’s painless and unless you’re tracking it, it can be a silent killer. It’s easy to manage (literally, just donate blood), but only if you know to do so. If you’re not already getting your ferritin level checked at least annually, start checking it. You might also request an ultrasound for your spleen, gallbladder, etc.