Does Everyone With Sickle Cell Need a Folic Acid Supplement?

Somi Igbene, PhD, ANutr avatar

by Somi Igbene, PhD, ANutr |

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Sickle Cell Disease News, an array of natural supplements to accompany a column about folic acid supplements for sickle cell disease patients

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It’s one thing to deal with the emotional and psychological trauma that comes with a chronic illness diagnosis, and it’s another thing entirely to navigate the treatment, or more specifically, the management plan that comes with it.

I know medical doctors mean the best, or at least I want to believe they do. But I find it irritating how eager some seem to be to dispense prescriptions without considering a patient’s circumstance and concerns.

I understand and appreciate that care plans are based on research and experience. But I also believe that current standard care plans aren’t suitable for every patient and should be personalized.

I have several gripes with sickle cell care plans. Maybe it’s because I’ve seen them fail for some of my family members, or perhaps it’s because some strategies don’t sit right with me based on new scientific research. Or, sometimes it’s simply because I don’t believe prescriptions always needs to be the way forward.

Yes, I need to disentangle my thoughts, but before that, I’ll explain my gripe with one aspect of the current sickle cell care plans: taking a high-dose folic acid supplement daily.

Folic acid is the synthetic form of naturally occurring folate, a type of vitamin B that’s essential for DNA production and repair and red blood cell production. Medical professionals believe it is vital for people with sickle cell because these patients need to make red blood cells more frequently than people without sickle cell, and they may be at increased risk of folate deficiency. Folate may also reduce the symptoms of anemia.

The issue is that it’s unclear whether folic acid supplements influence sickle cell severity. Besides, folic acid supplements can mask vitamin B12 deficiencies, which can cause severe neurological problems. A new Phase 1 clinical trial (NCT04011345) is currently underway to investigate the impact of folic acid supplementation in children with sickle cell disease.

Folate is easily obtained via diet

It is rich in green leafy vegetables such as spinach, broccoli, and chard, and all types of beans and lentils, including red kidney beans, black beans, brown beans, and red, green, and brown lentils. The best thing about getting folate through diet is that your body can absorb what it needs and excrete the remainder. So, the risk of overeating folate and developing adverse effects are minimal compared with a supplement.

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Getting folate through diet also means you get other beneficial nutrients such as protein, vitamin A, vitamin C, iron, and zinc, which are crucial for health, unlike a supplement that provides only a single nutrient.

Considering all this, and especially that folic acid supplements don’t seem to benefit people with sickle cell, I don’t understand why it is a mandatory part of the care plan for everyone.

I understand some people may be deficient with poor diets and may need to supplement. But I don’t know why supplementing is a blanket approach and why medical professionals don’t suggest diet as the primary folate source for people without deficiencies who can eat healthy diets.

Diet is my son’s primary folate source. As I mentioned in a previous column, he takes a multivitamin supplement mainly for vitamin D. That multivitamin also contains a small amount of folic acid that literally supplements his diet.

What are your thoughts on folic acid supplementation? Please share in the comments below. 

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Note: Sickle Cell Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to sickle cell disease.

Comments

K Dixon avatar

K Dixon

Omg yes! Finally someone spoke up on this. After doing my research on folate vs folic acid, I decided to use a multivitamin with methyl folate in it instead. And I'm also tired of drs using a one size fits all approach to his care plan.

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Somi Igbene, PhD, ANutr avatar

Somi Igbene, PhD, ANutr

One size never fits all!

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Daniel Gunn PGDip BSc avatar

Daniel Gunn PGDip BSc

Dear Somi, I fully agree with you on personalising treatment for sickle cell patient due to individual difference in terms of human health. I am 63 and suffer from haemoglobin HB Sc siclke disease; took folic acid in the 80's but immediately realised, the side effect of pain in my sheen and kind of numbess so stop and have since not looked back. On the contrary, my sister 55 also HB Sc haemoglobin like myself with similar sickle retinopathy problems takes folic acid daily with no side effects. Nutrition is key to a healthy lifestyle and longevity ... as my belated mother who has just departed from us aged 93 on the 12 of July 2021 would say; "our body shows what we eat".
People in medical school are not taught nutrition as a form of treatment for health problems so they come out as General Practitioners with very little knowledge on the subject. Medical doctors who work collaboratively by listening to their patients are the ones that make less mistakes.

The medical profession which started out based on a relationship between a doctor and his patient has been devisted from. As a 63 year old sickle cell patient,

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Somi Igbene, PhD, ANutr avatar

Somi Igbene, PhD, ANutr

Hopefully, medical school curriculums change to reflect the increased need for nutrition in medical care. Thank you for sharing your experience.

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Giorgio Baldanzi avatar

Giorgio Baldanzi

I am a Haematologist and I completely agree with the author of the above column. Not all pacient needs supplementation of folic acid. It always depends on patient's ingestion of vegetables. And I see colleagues incrising doses of folic acid in patients with pain crisis as if it would make any good for them. I found this column very appropriate in order to prevent over use of folic acid.

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Somi Igbene, PhD, ANutr avatar

Somi Igbene, PhD, ANutr

Thank you so much for your comment! I wish more medical doctors recommend food.

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Faith O. avatar

Faith O.

Thanks for this post on folic acid. It's importance is not in doubt, however, it is crucial to note, that the recommended daily use is far less than is prescribed most times; so we need to consider that. A daily intake of 400 micrograms is just ok. There is a popular brand in my country that has 5mg strength. For me, that is quite outrageous and worrisome with respect to the unpleasant effects highlighted by Somi.
Another consideration is the fact that we, in Africa, tend to overcook our veggies, and the first to get "burnt up", is folate; so proper advice with respect to properly cooked meals, and other alternatives, will also help.
Thanks

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Somi Igbene, PhD, ANutr avatar

Somi Igbene, PhD, ANutr

Steaming vegetables or stir-frying is a great way to preserve the nutrients. An alternative would be to consider juicing green leafy vegetables and eating more beans and lentils.

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Abeke avatar

Abeke

just saw this...but Most Doctors recommend Folic Acid at the snap of their fingers

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Somi Igbene, PhD, ANutr avatar

Somi Igbene, PhD, ANutr

I think it's because that's the routine care plan.

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Camille avatar

Camille

I could not agree more with your statement "But I don’t know why supplementing is a blanket approach and why medical professionals don’t suggest diet as the primary folate source for people without deficiencies who can eat healthy diets." As a woman living with Sickle Cell I am tired of this mold doctors place us Sickle Cell patients into. If I kept doing what they told me with Penicillin VK, Folic Acid, Hydroxyurea, and the pain medications up until this point, I would be sick more often than not. I had to change the way I ate, and although we cannot run from every chemical they put into the food we eat via pesticides etc. I do the best I can. And since doing things outside of the the Sickle Cell protocol I have been able to decrease hospitalizations dramatically, and not all on my own but with the aide of my holistic practitioner. I do take methyl combo that contains both folate in its most absorbable form and Vitamin B12. Penicillin left my gut health in a wreck and Hydroxyurea has changed my hair growth behavior and manageability a big headache. But I am thankful for those that have helped me and listened to me along the way. Medical doctors in western medicine are not properly trained in nutrition, they are taught how to manage disease with medications and not with what the body is naturally capable of doing nor using nature and all that the Creator provides that works with the body to heal it. I remember once I asked the doctor if I can take Liquid Chlorophyll while I was recovering from a Crisis. It is good for cleansing the blood and building the blood up, as I do not take blood transfusions, she/he said no. I did not comply, kept the bottle in the fridge in my room and added a tablespoon to my pitcher of water everyday (could not see through the pitcher) and also ate the healthiest options and raw veggies from the patient's menu and eat up all the fruit and veggies I could, walked and did my incentive spirometer as directed and made sure to get up out of that bed to expand my lungs and breathe as a lot of the times Sickle Cell patients go in for treatment of a Crisis and end up with Respiratory infection ( due to decreased lung expansion- being in bed, not utilizing incentive spirometry as directed and pain medications that make the lungs "lazy" for a lack of lay man's terms to fully expand and breathe in the O2 supplementation via nasal cannula). I understand everyone's Sickle Cell Anemia/Disease effects each one of us differently but with proper care , rest, nutrition, and stress control and realizing too much drama in life can trigger a Crisis, doctors have a long long long way to go before they will ever "get it!" I don't care how smart you are, that makes persons haughty, and too big for their britches, not caring about the patient and just wanting to rub their own egos of knowledge while your patient is suffering through and through, disgusting!!

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