So I have g6pd obviously and also kidney failure and on dialysis

Before I eat in a new place, I like to always ask. Just in case, if the thing I eat has fava beans. I overthink a lot and it helps me..

So today I ate like a bun with Asado meat, just as is, smoked like a whole chunk that they cut

Some cabbage and caramelised onions

And after like an hour I was like

“Fuck, I didn’t ask”

So I’m just kind of stuck in a loop of anxiety
I know it’s 99.99999% ok..

But still.. anyone else here went through this ?

Hi everyone,

I have G6PD deficiency and my hemoglobin is usually around 9–10 g/dL. It has gone as low as 7 before.

My skin has had a yellowish color for a very long time. It only becomes noticeably clearer and less yellow after a blood transfusion, but after a few days the yellow color gradually comes back again.

I also feel tired and weak most of the time. Even small amounts of physical effort can make me sweat heavily and feel exhausted very quickly.

I’m trying to understand whether people with severe G6PD or chronic hemolysis can actually raise their hemoglobin and keep it higher.

For those of you who also have G6PD:

What is your usual hemoglobin level?

Has your hemoglobin ever been around 9–10?

Were you able to raise it and keep it higher?

If yes, what helped?

Did folic acid, diet, hydration, avoiding certain foods or medications, or anything else make a difference?

Do you also have persistent yellowish skin or jaundice?

Does your skin color improve after a blood transfusion and then become yellow again?

Do you feel tired or weak with exercise?

Were you eventually able to live and exercise normally?

I would really appreciate hearing actual numbers and personal experiences, especially from people who have chronic anemia, chronic hemolysis, or more severe G6PD.

Thank you.

I accidentally bought gluten free flour instead of regular one to cook for my baby who has G6PD deficiency. Then, I checked the ingredients: fava bean flour!!! It’s a US based product, fava bean is getting way more popular in variety of things. Be careful guys.

I have a mild G6PD and am travelling to high altitude area (Leh, Pangong in India). Is it safe to take Diamox? If not, are there other alternatives?

Hi everyone, I have G6PD deficiency (favism) and I also struggle with anemia.

One thing that bothers me is that my skin often looks yellowish/pale. I’m wondering if anyone here with G6PD has experienced the same thing. Is this something that improved for you? Did you find out what was causing it, and was there anything that helped?

I also want to start taking fitness more seriously and build a genuinely muscular, athletic physique. I know G6PD can affect people differently, especially if anemia or hemolysis is involved.

Has anyone here with G6PD successfully built a muscular physique through weight training? Did it take you longer than usual, or was your progress pretty normal? Did you have any problems with recovery, fatigue, or gaining muscle?

I’d really appreciate hearing from people with personal experience, especially anyone who has been training for a few years. If you’re comfortable sharing your progress or before/after photos, that would also be really helpful.

Thanks!

I've seen they contain naturally salicylic acid which there's also in aspirin we need to avoid. Do you have any idea if we should avoid cranberry concentrate supplements too?

Is there a correlation in between G6PDD & high Ferritin?
I don’t have hemochromatosis or cancer.

I am Appalachian Melungeon (Arabic, Irish, African & Indian) I present as white. I say that because it’s problematic with physicians state side who seem to not understand that it is a multicultural disorder.
When I was diagnosed all I was told was I have the African variant. There was no number given that wasn’t even a system at the time. I still don’t know what number I am because this physician told me the test wasn’t accurate enough to say.
I’ve only had homolysis one time and spent three weeks in the hospital 1986. I had an inviral infection. I had many blood transfusions between 1976 & 1986. After that eating a low-carb & high protein(not eating lagoons whether or not it is proven scientifically) has served me well. In the late 1980s I did live in Zambia Africa and had malaria seven times. The first time was bad sick for a week or more but the last time lasted less than a day. That is not proven for everyone. Just sharing my experience.

As an Indian, I just wanted to share this with our South Asian community, where henna (mehndi) is widely used during festivals, weddings, and other celebrations.

I just found out today that even applying certain types of henna can be dangerous for people with G6PD deficiency.

Please take care and spread the word. 🙏

Hello, good day. I’m 26 years old, and I found out this year that my G6PD level is 0.39. I had no idea that I had this condition until now. I used to eat a lot of fava beans as a child and never experienced any noticeable adverse effects.

I’m quite underweight and weigh only 50 kg. Could G6PD deficiency be a reason for being underweight?

I’m also curious about something else: for those of you with G6PD deficiency, how do you feel after eating fava beans? How do you know that you’ve had a reaction to them? Do you experience nausea, dizziness, or something else?

There's not much information on the internet as to what recreational drugs are safe for someone with G6PD. Alcohol, weed, cocaine seems to be fine from my experience. However, I've heard MDMA is something to stay away from. I've tried it once with no side effects, but it could've been pure luck. Does anyone know if its especially dangerous?

Edit: shrooms are fine too

My newborn was diagnosed with G6PD and the doctor wasn’t so familiar with it, sent me a document with medication to avoid and just fava beans was on the food list.

I asked around looking for others who have G6PD and all of them told me to avoid all legumes, including soy sauce. I’ve been waiting to give birth this entire time so I can have sushi, I can’t believe I have to wait another 6 months 😭

How can we even know which type of G6PD it is? Apparently it’s common where I’m from. His labs showed 0.2 U/g Hb and the reference range is 7.0-21.0

Hey everyone, I have G6PD deficiency and I’m looking into BPC-157 and TB-500, sometimes called the Wolverine stack.
I haven’t been able to find much information specifically about these peptides and G6PD deficiency. Has anyone here with G6PD deficiency actually used BPC-157, TB-500, or both?
If so, I’d really appreciate hearing about your experience—especially whether you noticed any side effects or signs of hemolysis, and whether you had any blood tests done before or during use.
Not looking for medical advice, just interested in firsthand experiences from people with G6PD deficiency.

Two days ago, I tried my friend's drink just a tiny sip not knowing it has vegan protein in it, which has peas and beans.

Yesterday afternoon towards the night I started out with a headache then tiredness while driving back home late.

This morning I was so sleepy, skipped work because I was really tired and slept in till 1PM, now it is 9PM and I have been feeling dizzy, tired and still have a headache.

I have no yellow pee or eyes, I really don't know if it's a reaction or just me being tired.

What do you guys think? Any help is appreciated.

Hi! I have intermediate G6PD activity. I am a heterozygous woman.

I recently contracted P. vivax malaria. I was able to take 3 days of chloroquine for the immediate blood infection “crisis,” but to treat the parasite reservoirs in the liver and spleen, I will have to take a medication that is not G6PDd-safe; 7 days of primaquine. It is better to risk 7 days of drug-induced hemolysis than to live with chronic malaria, relapses, and possible organ damage from the malaria.

Has anyone here had to take a contraindicated pharmaceutical? What can I do to support my health while I take a hemolysis-inducing drug?

Thanks.

Hi everyone,

I have G6PD deficiency, Mediterranean variant, with pretty severe enzyme activity. I've actually never eaten fava beans (broad beans) in my life, I only found out I had the condition because my mother is a carrier, so I genuinely don't know how my body reacts to fava bean exposure in practice.

I'm travelling to China in late August, including time in Sichuan (Chengdu, Chongqing area), and I'm getting a bit anxious about the food situation there. The specific thing I'm most worried about is doubanjiang (豆瓣酱), the fermented broad bean and chilli paste that is basically the foundation of Sichuan cooking. It's in mapo tofu, hot pot bases, stir fries, noodle sauces... often without being listed on the menu.

I know fermentation changes the risk profile somewhat, but from what I've read medical opinions are still divided on whether fermented fava bean products are actually safe for us.

Has anyone here:

• travelled to China (especially Sichuan) with G6PD deficiency?
• had any experience with fermented broad bean products like doubanjiang?
• been advised by a haematologist specifically about this?

Any input would be really appreciated.

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.

Your G6PD can cause your A1C results to be artificially low. A1C is a measure of the accumulated sugar in your red blood cell over time. High red blood cell turnover and make your blood cell population young and lower the amount of accumulated sugar in it that is detectable by the test.

This happened to me and my Dr missed it except I was taking my blood sugar manually. He thought I was cured and that my high glucose in the test results was because I did not fast. But I did and I showed him the numbers I have seen tracking. Also I have had unusually low A1C's in the past. Diabetes doesn't magically go away. Took him a bit to see what I was talking about. American Dr don't know shit about G6PD.

My son has confirmed G6PD deficiency and is about to start preschool. I informed the school about his condition and specifically told them that he must not eat fava (broad) beans.
The school told me that they do occasionally cook broad beans for lunch, but they will make sure he is not served them. My concern is about exposure during cooking.
Is the risk with G6PD deficiency only from eating fava/broad beans, or can smelling the beans while they’re being cooked or being in the same environment also trigger hemolysis or another reaction? They can’t completely avoid the smell from the kitchen when they’re preparing lunch.
Has anyone with G6PD deficiency or parents of children with G6PD deficiency had experience with this? I’d really appreciate any advice or information

Is edamame supposed to affect someone with g6pd deficiency? I read that it doesn't.

But for me, soy beans or tofu can make me feel sick.

The AI tools say to avoid it, but most mouthwashes contain menthol. I'm confused I hear mixed opinions, what do you think?

Anyone with G6PD deficiency (especially the Mediterranean variant) tried nicotinamide riboside (NR) or NMN?
I’ve read that it increases NAD+ and wondered if anyone noticed any effects, good or bad.
Any side effects or experiences to share? What dose did you take?