I have sickle cell trait. My blood level is always dangerously low. Hb 6 g/dl. I have headaches almost all the time. Especially when I go out at noon, I get headaches and leg pains so most of the time I just stay at home. I frequent get dizzy when I get up and my vision becomes blur for a short time. I get pain in almost every part of my body but they are usually short lasting and for that they are somehow bearable.
Can someone please help me understand....Is it normal to have all these when you're just a carrier? I don't even know what will happen if I get pregnant one day or if I get into an accident with this hb level!
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PrettyNoona
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Hello Uniy, I also have the trait and ALL the symptoms you described everyday. I tell my doctors but they never say that my headaches, pain etc. is related to sickle cell trait because they know little to nothing about it. Instead, I've been diagnosed with fibromyalgia, chronic pain, degenerative arthritis etc.
Science has caught up their stem cell transfusion or bone marrow transfusion’s to help those with sickle cell anemia it may not help everybody but as gently as some of the symptoms can be it would be worth looking into the possibility of being a candidate
Symptoms are common, but you should go get your blood test to see if you have something a little further than just a sickle cell trait because you can have sickle cell and I have other components that give you further symptoms without having the disease
I'm always in hospitals seeing doctors But there's no progress, they always tell me there must be something else, they ask me a lot of questions but at the end of the day they can't diagnose anything.
Yes, it is normal. Even if it is rare, someone has to be in that small group and I assume you wouldn’t lie about your symptoms, so don’t ever let a doctor tell youIt’s impossible it’s rare only a very few people have symptoms if you’re presenting with symptoms then apparently you’re one of those view and it’s normal for you to have the symptoms you shouldn’t be compared to other people that are completely on related to you anyway if you’re having the symptoms demand that you be treated for the element and if one doctor doesn’t validate your experience just keep going until you find the one that believed you and not what the bloodwork says
I absolutely agree I struggle with pain everyday and they always tell me it is other things; my weight, arthritis etc.. and there is nothing to do for it.
There is a growing body of research that symptoms with AS are not so rare as they try to say. It’s just that they always dismiss our symptoms bc it’s hard to measure in a lab. But the CDC website acknowledges that trait
Can have pain crisis from something so simple and common and dehydration. You need fluids and pain medicine when you get sick. You need to educate them with love and logic. Look up the literature and show them. First find a primary physician that believes you and will at least give
You pain meds then hydrate as much as you can at home. Have them refer you to as many hemotologists as it takes to find one that knows the truth.
I also have sickle cell trait and use to struggle with low hemoglobin levels which lead me to iron deficiency anemia. I’ve been taking Floravital from the Floradix brand of liquid iron to keep my hemoglobin levels high. It boosted my hemoglobin to normal levels in weeks. I take 20ml 1st thing in the morning on empty stomach with unfortified no pulp orange juice and wait 30mins before consuming anything. It really works extremely well for me. This grew my hair back when it was falling out. I also kept my electrolytes in balance by drinking pedialyte every other day. I don’t consume coffee/tea/ dark chocolate and were near my supplement time because so many things can inhibit iron absorption. I’ve learned so much about having SCT…Now I’m on a journey to raise my ferritin levels (storage iron) so I'm also taking a product from Three Arrows that makes a heme iron supplement. I take it out of the brown rice capsule and just take the powder with orange juice. I’ve only been doing this for about 2-3 weeks but my nails look longer stronger and healthier and I have more breath (if that makes sense) … I’m not as winded as I use to be going up stairs and I have a little more energy so far. I remember having nothing to lose because I literally felt like I was dying but Jesus saved me and started showing me what to do. This is just what worked for me personally. I hope this helps a little.
It sure does help, and a lot not little!….I learnt so much from your journey and I feel motivated. I’m also getting better by the way, I have more breath too (you made sense, climbing the stairs used to be a big hassle)….. but now I can even go hiking every weekend. I used to ache all over and suffer if I were to walk that far before I started taking the supplements. But I met a nice doctor and I’m constantly taking vitamin c and iron supplements. Unfortunately I moved to another country, I am currently my own doctor. I hope I do find a good doctor soon.
Hi, unfortunately yes it is normal. I also have the trait and from childhood I had pains in my knees, and strange pains in my hands where it was sensitive to touch and temperature. As I got older the pains in my knees was less frequent, however now I have been diagnosed with osteoarthritis in my hips. I also have low haemoglobin levels. It can't all be a coincidence that most of us with the trait have pain, in joints and other symptoms. I too have spoke with my GP and got fobbed off that I have the trait and I don't get any symptoms which is not true. My son has the trait and he too has symptoms joint pain etc, especiallywhen playing sports. What your going through is normal, however I also agree with other comments to get other checks done aswell. But equally stand firm and don't let the GP tell you because you have the trait you don't get symptoms because we do. I hope all goes well. Take care
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