Sickle Cell Trait & Thalassemia

[Somersinger]

Hello I am a 59 female diagnosis with sc trait and Thalassemia having many crisis over the years from age 25. Recently hospitalized in crisis after 6 yrs without any, followed by blood in urine and weight loss. Should I expect more of this why do I have this dual diagnosis and why so active crisis with just a trait? Thank you for this site.

[jo19]

Hi Somersinger, welcome to the forum. I am sorry to read about what you are going through but I am extremely confused about you having the trait with thalasemia. I have never heard of that. Are you sure you don't have a form of sickle cell with thalasemia? Some people with sickle cell don't have as many crisis or do not have a specific pattern when it comes to having crisis. With the blood in the urine, it can sometimes be your red blood cells breaking down. It's called haemolysing or haemolysis. Not sure if I got the spelling right. You should go to your doctor to be sure about what is going on. I still believe you need to be very sure if it's just the trait you have or full blown sickle cell. Or you can enlighten us more about having the trait with thalasemia. As with expecting more is "these" if you have sickle cell, it can be extremely unpredictable. Good luck. We are all in this fight together.

[Somersinger in reply to jo19]

Thanks, I hear what your saying about trait with Thalassemia it's my burning question however my best explanation still comes from doctors who are learning as they go. Living in a rural area with few cases leaves me at a disadvantage also ... Guess they do their best. But this is the diagnosis I received, whether its entirely accurate has always been my concern.

[faithfullyyours]

Hi Somersinger, welcome. For many years I thought I had only the trait, but a few years ago after going into one of the most painful crisis I was diagnosed with sickle beta plus thalassemia which explained the pain. My doctor said that it is sickle cell in a moderate form with thalassemia attached. I got one from each parent. Lucky me huh. My best advice would be to be retested then you will know exactly what you are dealing with. Hope you have pain free days.

[JOI90]

Hello, I also have sickle cell trait with alpha thalassemia. Doctors tell me I shouldn't experience pain but I started to experience pains so excruciating from about 25 years old. I have been to the ER each month for two years straight. I feel hopeless. none of the over the counter meds work and the doctors look at me like a drug addict. What I don't understand is that if we have some amount of sickle cells in our body why cant doctors see that we can at times have crises. Please any input any help. Living in NYC so many resources but none for me

[Moanofarc]

Hi my son was diagnosed with sickle cell trait plus alpha Thalassemia trait last year age 13.my son is white caucasion.Both of his parents are white Caucasian. The condition definitely seems complex and nearly everyone I have spoken to has not heard of it and doctors say there's not much to worry about.I disagree with that as from what I see in my son there's definite health issues that I believe are connected to the traits,but I still haven't found a doctor that is willing to do more testing to try and find connections between his symptoms and the traits.we live in Australia. My son gets very tired,he has difficulty running,he gets headaches,car sick, bloodnoses,sinus problems, and other things.I won't give up on my search for more answers.

[Moanofarc in reply to Moanofarc]

Dizziness I meant to add to the symptom list.

[Kellifairley in reply to Moanofarc]

Please let me know what you find out. I have this as well.

[Yvonny]

I just found out that I have HbC with alpha thal trait. I have been having crises since I was a little girl and with menstration it only got worse. My LDH is always almost twice high compared to the upper limit of the normal range. It’s a big puzzle I intend to solve. I have done extensive rheumatological exams and consultations and results show that it’s not a rheumatological condition. I had some breathing issues and I was asked to go to the lung clinic where they found elevations in the lining of my pleural and they took a CT scan controlled biopsy and analyzed the sample. They found that the elevations were an accumulation of dead red blood cells which they said is typical in sickle cell disease. I think that once doctors don’t have the answers to all the puzzle, they should also not ignore the issues and pretend they don’t exist because they do. Besides they should realize that hemoglobinopathy traits with associated bone pain crises is a grey area that needs to be totally researched and appropriate management instituted.