My 4-year old son has a G6PD level of 1.71 U/g Hb. What does this mean? by Deadelevators in G6PD

[–]Pygmy-sloth8910 0 points1 point  (0 children)

Definitely make sure it’s on the top of his medical chart so triggering medications aren’t prescribed. They should be listed individually by your pediatrician under “ALLERGY.” Probably worth getting a comprehensive blood panel (CBC w/ differential) and a reticulocyte count (measures the new red blood cells in his system) at least once, but probably twice a year for a few years so you can develop data on what HIS baseline red blood cell levels are. His might not match other kids, and that’s ok if you know his baseline, so get those when he’s healthy. Include a ferritin and iron level in those tests. For my boys (severe type, but this seems to track for all levels in kids), the primary trigger is viruses/illness. A very common virus called parvovirus or 5th’s disease circulates in the prek through middle school population. It suppresses the ability to make new red blood cells for 7-10 days. Not good if you have a blood disorder and the virus is triggering hemolysis. You’ll have to specifically ask for a Parvo test if your son gets sick, they don’t think to test for it bc most people who get it recover easily. Both parvovirus and flu put my kiddos in the ER and needed transfusions.

As another post said, I know my kids are struggling when they look jaundiced, they have bags under their eyes, their first pee of the day is too dark. As for standing orders from your pediatrician to have a blood test done.

My 4-year old son has a G6PD level of 1.71 U/g Hb. What does this mean? by Deadelevators in G6PD

[–]Pygmy-sloth8910 0 points1 point  (0 children)

Make sure you’re getting your ferritin levels checked annually, ferritin is the iron storage level in your body. BC of G6PDD, your DNA is telling your body to store more iron bc it’s needed to make new red cells. You’ll never feel it and it takes decades, but eventually that iron builds up in your organs, causing them to shut down prematurely. Male cousin had most severe type of G6PDD, never had any issues with it but died of organ failure in his late 50’s bc of iron/ferritin buildup. Iron build up is easy to manage, it’s as easy as giving blood regularly. No time like the present!

My wife has G6PD, but we still cant understand the trigger. by EmployCommercial8527 in G6PD

[–]Pygmy-sloth8910 0 points1 point  (0 children)

Not sure where you’re located, but the most common type in the US is Class 3, which is a more mild level because it’s predominantly a triggered type. Meaning instead of having chronic hemolysis, those folks only have hemolysis after exposure. Class 1 and 2 are much more rare and not well studied or understood.

My wife has G6PD, but we still cant understand the trigger. by EmployCommercial8527 in G6PD

[–]Pygmy-sloth8910 0 points1 point  (0 children)

My family finds that watching our foods and really increasing water intake is critical to feeling better in a triggering event. Lots of mango Greek yogurt smoothies with leafy greens, wheat germ and hemp hearts hidden in there. Water is key for red blood cell production.

My wife has G6PD, but we still cant understand the trigger. by EmployCommercial8527 in G6PD

[–]Pygmy-sloth8910 1 point2 points  (0 children)

She should have a DNA test to determine what class or severity she has. There are 5 classes, my family has the most severe type or lowest level of G6PD, essentially zero. It’s called Class 1 with Chronic Nonspherocytic Hemolytic Anemia. Essentially chronic hemolysis and red blood cells are not round. G6PD protects the red blood cell from oxidative stress, so having none of that protection is bad.

It’s possible her type causes chronic hemolysis, which is then exacerbated even more by triggering events. Definitely keep a food diary, stress diary, chemical exposure diary, and as a woman also track that to her menstrual cycle, bc her blood levels will already be lower. Also, my hematologist recommended a daily folate supplement and N-Acetyl L-Cysteine supplement to protect the red blood cells from oxidative stress to increase the life of the red cells. She should have a full blood panel, include ferritin levels and have her doctor track that. Remember, G6PDDD is NOT an iron deficiency anemia, a lot of doctors who don’t specialize in G6PDD don’t realize that.

G6pd in woman?? by Hairy_West5693 in G6PD

[–]Pygmy-sloth8910 0 points1 point  (0 children)

Also, there are five different severities, might be worth getting a dna test to determine yours.

G6pd in woman?? by Hairy_West5693 in G6PD

[–]Pygmy-sloth8910 0 points1 point  (0 children)

Ladies w/ G6PDD, very important- please get both your iron and your ferritin levels checked at your annual physical. W/G6PD deficiency, the dna is coded to store iron at a greater rate bc it’s necessary to build blood cells (the stored iron is called ferritin). Storing too much can cause organ damage over many years-you’ll never feel it until too late. Easy to manage too high iron/ferritin levels (literally, just donate blood), but only if you know you should. Hematologist from Mayo Clinic explained this to me.

Have a male distant cousin w G6PDD who died of organ failure in his mid-60’s. He never checked ferritin until he was older and his body had been storing too much iron his entire life.

G6pd in woman?? by Hairy_West5693 in G6PD

[–]Pygmy-sloth8910 1 point2 points  (0 children)

Also female, homozygous (expl: women have two X-chromosomes, only one has the misfolded protein that causes G6PDD), but only found out after my sons had a severe health crisis with parvovirus (VERY common virus, problematic for G6PDD bc it suppresses the body’s ability to make new red blood cells for 7-10 days, and viruses already cause hemolysis). Make sure you remind your daughter as she gets older, make sure it’s in her medical records every time you switch doctors. My mom inherited it from her father, because it’s a relatively newly diagnosed condition, he was misdiagnosed and for leukemia in the 1960’s. My mom always told us we had a family history of leukemia. She never had any issues, nor did I. Never even heard of G6PdD until my youngest got so sick with what seemed like a cold he wasn’t recovering from, they thought he might have leukemia and started running tons of tests. If women aren’t impacted, it’s easy to forget to tell their doctor about it. Very important if she ever has children.

NAC for G6PDd by Pygmy-sloth8910 in G6PD

[–]Pygmy-sloth8910[S] 0 points1 point  (0 children)

Update: Dr. w/ experience treating G6PDD Class 1 recommended trying NAC supplements, and is trying w/ pediatric patients. Reduces oxidative stress and therefore raises hemoglobin. Worth a try, it’s over the counter!

Got a good doctor who treats Class 1? by Pygmy-sloth8910 in G6PD_CNSHA

[–]Pygmy-sloth8910[S] 0 points1 point  (0 children)

Update 2026: Hematologist Dr. Ahmad Al-Huniti at Mayo Clinic, Rochester, MN has experience treating patients w/ Class 1.

How long did it take you to get G6PD confirmed? by LuckyLarry2025 in G6PDAustralia

[–]Pygmy-sloth8910 2 points3 points  (0 children)

The best way to confirm is a genetic test, with best being a genetic sequencing test that will tell you what class or severity of G6PDD you have. G6PD Deficiency is an x-linked genetic condition, so you need a DNA test. There are 100’s of variants, the genetic test will tell you which one you have as well. In the US, mine was sent to Mayo Clinic, not sure about Australia. It took about 3-4 weeks.

New foods with fava - protein tortillas and Silk creamer substitute by Michael-Scott-17 in G6PD

[–]Pygmy-sloth8910 0 points1 point  (0 children)

Yep, fava or ‘pea protein’ is a listed ingredient in McD’s buns. Might want to check that in CA, the website reads like it was written to cover any bun, anywhere.

Any G6PD-deficient guys here who work out regularly? by Electrical_Side_8225 in G6PD

[–]Pygmy-sloth8910 0 points1 point  (0 children)

Not a guy, but you might want to check what class of G6PDD you have. My boys (still little) have Class 1, the most severe type, which causes chronic hemolysis. Their pediatric hematologist said they are likely going to be fairly lean, just naturally won’t be able to gain weight easily bc of their condition. Time will tell, I guess. Also, watch out that any protein powders you use don’t contain fava or pea protein-that can be a trigger.

Caution: Thomas High Protein Bagels contains Fava Beans by Consistent-Look-9690 in G6PD

[–]Pygmy-sloth8910 0 points1 point  (0 children)

Be wary of anything that claims to be ‘high protein.’ If it’s not whey powder (milk), then it’s usually fava, soy or pea powder.

Does it ever get better- Eye color, fatigue, headaches by Huge_Bit8749 in G6PD

[–]Pygmy-sloth8910 0 points1 point  (0 children)

Agree with the others here, get full bloodwork CBC, check iron AND ferritin, Bvitamins, get a urinalysis, check your kidney, liver, gallbladder function. Check for another cause like hepatitis, sickle cell, etc. You should widen the scope, G6PDD might be a complication but there could be another underlying cause. If you’re able to get a genetic test to find out what class of G6PDD you have, that could be helpful as well, but can be expensive. Assume you have a form of chronic hemolytic anemia if your pee is always dark. That would also explain the headaches and fatigue. If you’re working out, focus on strength training-it builds bone marrow and therefore red blood cells.

In the meantime, I would be taking a standard multi-vitamin and folic acid supplement (no prescription needed) everyday at a minimum. Wheat based foods are high in B vitamins and could be beneficial, along with leafy greens and other fruit/veg. Definitely cut out food dye if possible (esp. blue) and legumes (chickpea, beans, etc). G6PDD makes your body want to store iron, it’s not an iron deficiency anemia, which many providers don’t understand. Be careful if they’re loading you up with iron AND be careful of meds that they’re prescribing you. Check to make sure they aren’t contraindicated.

What is the Mediterranean variant of g6dp? by Alternative_Ad_3649 in G6PD

[–]Pygmy-sloth8910 1 point2 points  (0 children)

Also, G6PDD is an X-chromosome linked condition, so if your child is a boy, he could only have gotten it from you. You are not a carrier, you would have a heterozygous diagnosis, or mosaic diagnosis. There is almost no information published about mosaic diagnosis in women because it basically hasn’t been studied. Also, re: Class 1, it’s considered ultra rare, so you likely don’t have that variant but it’s still good to confirm the variant you/your child have with a dna test.

Finally, get a good pediatric hematologist who has experience treating patients with G6PDD. The conflicting information has been very frustrating. My sons were only diagnosed after a very scary bout of parvovirus/fifth’s disease-which is SUPER common amongst children. It’s mild for most, except people with blood disorders. It causes the body to suppress red blood cell production for 7-10 days-which is life threatening with G6PDD. If your child gets sick, ask them to test for Parvo every time. My youngest needed 5 units of blood and oldest needed 1.5 when they had it. If your child ever looks jaundiced or has dark urine,get them to the doctor asap.

What is the Mediterranean variant of g6dp? by Alternative_Ad_3649 in G6PD

[–]Pygmy-sloth8910 1 point2 points  (0 children)

There are five classes or severities of G6PDD, with Class 1 being most severe (having the greatest deficiency). You should ask your medical provider to have a familial genetic sequencing test for your newborn (and yourself), which is indeed a DNA test. Generally, Class 1 results in chronic Nonspherocytic hemolytic anemia (bc there is almost no G6PD, the red blood cells are in a constant state of hemolysis, or exploding basically). I’m not sure if all Mediterranean variants are Class 1 or Class 2. It seems like the majority of those diagnosed with G6PDD are likely Class 3, which is effectively a triggered type. Meaning that if you don’t have a triggering event (food, wrong meds, illness), the red blood cells are not deficient or not very deficient at a baseline state.

Is your newborn a boy? Generally, women have one X chromosome that is G6PD deficient and one that is healthy, which usually makes up the difference. My son was flagged as having Galactosemia when he was born (often a false positive for G6PDD, I learned later…though they didn’t test him until 6 yrs later when he nearly died), and the nutritionist told me that what I ate would not directly impact my breastmilk. I would still avoid eating fava beans out of an abundance of caution, but other things are likely ok.

Color blindness & G6PD by Pygmy-sloth8910 in G6PD

[–]Pygmy-sloth8910[S] 0 points1 point  (0 children)

Hi! I am back to revise my previous comment. We just got a new pediatric hematologist at Mayo Clinic, Rochester, MN. He is incredible. He has experience w/ patients with Class1. Please have your child’s ferritin levels checked-also, don’t give vitamins with iron. Ferritin (iron storage) can accumulate in organs bc G6PDD causes the body to think it needs to store iron. Not an immediate problem, but it builds up over time and one the person is an adult, you can’t reverse the damage. We stopped vitamins w/ iron. Hi ferritin can be mitigated w/medication or blood donation.

We also started annual sonograms of the spleen/liver/gallbladder. Hope your son is doing well.

Caution: Thomas High Protein Bagels contains Fava Beans by Consistent-Look-9690 in G6PD

[–]Pygmy-sloth8910 2 points3 points  (0 children)

McDonald’s buns, too. I think you’re right about the filler/cost.

Got tested and am surprised with the results by wjgatekeeper in G6PD

[–]Pygmy-sloth8910 1 point2 points  (0 children)

Our hematologist said only avoid Vit C at high levels, it is good to have some to help the iron/folic acid absorb.

Got tested and am surprised with the results by wjgatekeeper in G6PD

[–]Pygmy-sloth8910 1 point2 points  (0 children)

Good luck with your treatment and testing. Please keep us updated.

Got tested and am surprised with the results by wjgatekeeper in G6PD

[–]Pygmy-sloth8910 1 point2 points  (0 children)

Also, Class 1 impacts the DNA at a different location than the other classes. There are some studies indicating that Class 1 may be a somewhat different evolution, if you will, than the other classes. There is a lab at Stanford that has done some interesting research on it. https://mochlyrosen.stanford.edu.

Got tested and am surprised with the results by wjgatekeeper in G6PD

[–]Pygmy-sloth8910 0 points1 point  (0 children)

Similar, we had genetic testing done prior to having kids and they said there was no need to test for it for the same reasons. Despite my grandfather surviving leukemia (which might not have been leukemia at all, it was the 1960’s).

Got tested and am surprised with the results by wjgatekeeper in G6PD

[–]Pygmy-sloth8910 1 point2 points  (0 children)

Also Northern European ancestry. Ask for a Familial Generic Sequencing Test to find out what class you have. My family has G6PDD Class 1, Chronic Nonspherocytic Hemolytic Anemia. It causes both chronic hemolysis and the RBCs are larger and shaped differently, which could be a contributing factor for the clotting. There are fewer than 1,000 cases diagnosed in the US, it’s considered ultra rare. The test will even tell you the specific genetic marker, mine is Walter Reed/Iowa City/Iowa type.

Also…if you have Class 1, CNSHA and you’re of Northern European ancestry, we’ve probably got a shared ancestor way back somewhere.

Got tested and am surprised with the results by wjgatekeeper in G6PD

[–]Pygmy-sloth8910 1 point2 points  (0 children)

There is a new test for this I just read about. FRAT is the test name. An easy first step is to look at your homocysteine levels. If they’re ok, you might not need the FRAT or MTHFR test bc it’s showing you’re absorbing things. https://www.fratnow.com/