thal minor or heart problems

Hi...I read many postings and I expect this site may be helpful.  My question is whether I'm experiencing symptoms of thal minor or a heart condition or maybe both.  I was diagnosed with thal minor 30 years ago but suffered no symptoms and forgot I had it.  About 15 years ago I started 'crashing' occasionally after heavy exertion.  I would be extremely fatigued, almost unable to move, for 4-5 hours but then my exhaustion would suddenly pass and I would regain my strength. 

I always connected 'crashing' with my heart problem...I've had chronic atrial fibrillation for the last 15 years.  AFIB is an arrhythmia where the chambers of the heart fire erratically so that the heart is far less efficient at getting oxygenated blood to the muscles. 

My cardiologist says my AFIB condition would not cause or contribute to 'crashing' as I defined it.  So now I'm thinking it might be the thal minor.  To make matters worse I went into permanent AFIB 2 years ago and I started crashing more often until now it's about once per week mostly after exertion but sometimes without exertion.  Last week my crash lasted 3 days after heavy exertion. 

I expect some of you might have experienced what I call crashing.  If you would be so kind as to share your description with me I would appreciate it.  I believe that the combination of my AFIB on top of my thal minor is causing my crashing problems and it's getting worse.

BTW, my daughter also has thal minor, she also calls it 'crashing', but she believes she is suffering symptoms of chronic fatigue syndrome which she also has.

Could both of our problems be caused by thal minor?

John

Hi Jkdonofrio.
Welcome  to my life of uncertainty.
I know exactly what you are talking about and i'm living the nightmare, still the doctors is denying me the truth . I Believe  thal minor or what is defective in my cells and circulatory system is causing  all my problem.
I got to a point that i'm exausted from the doctors merry -go- round,and i have given up,  expecting a solution from the doctors.
I have read and heard a lot of different history to convince me that I'm not alone and I'm not mental either,I just live in a part of the world where the doctors are not trained or dont care about people with thallasemia.
So I've learnt not to rely on them.

I 'm now taking good care of myself by  maintaining my cholestrol level managing my bloodpressure ,ensure a low fat anf low sugar  intake and I am almost like a recluse ,that is to minimise the stressfull  situation that is bad for my well-being.

The positives  is that i found this web-site and i'm learning about the blood disorder and this able me to undestand my body and my ailments.
I hope you get the same peace of mind and support from this site and undestanding to make your life and your daughters life manageable   ,
Good luck and I do wish you get a better experience with the medical professionals in your corner of the world.
I talk about my experience because that is all i know to assist you in knowing that there is another person that knows exactly what you are talking about.
Kathy

Ahh...the crash...When we first started dating, my boyfriend thought I had narcolepsy...now he measures my blood pressure while I am crashed and brings me water and food...

The symptomatic thal minors tend to refer it to that as a crash or similar...My dad, brother and I all go through it and we are beta thal minors. A mild anemia is still anemia and it can suck for some people, especially if they have conditions of the heart. We underestimate the resilience of the human body, but we also underestimate the impact of our actions. If your heart has problems it will cause you to feel more tired. I have PVC's which can wear me out if they are too frequent. My mom has chronic tachycardia and she gets exhausted from that and she non-thal...

How is your hemoglobin?

Hi John and welcome to the group,

I've talked to many thal minors who need a nap almost every day. I think it relates to your hemoglobin level. Have you been told your hematocrit or Hb level? Your symptoms sound very much like anemia. Folic acid may be of some help. You might also consider a calcium and magnesium supplement. Please see the post at

http://www.thalassemiapatientsandfriends.com/index.php?topic=118.msg6653#msg6653

I think there is a great deal of fatigue syndrome among thal minors, especially as they age, and low hemoglobin levels should be considered as an important factor. Doctors generally believe that thal minor has no symptoms but that is far from true. Many minors experience serious quality of life issues, but it seems that no one is listening. I don't know if there has been even a single study concerning the health of thal minors. Their problems have been routinely downplayed and ignored by the medical profession and it is only through forums like this, where minors have any voice.

Thank you Andy, marientina, and kathy 11 for your replies.  I seem to already be doing most of the right things according to each of you but I will look into those that I'm not.

I stopped calcium and folic acid supplements a year ago because I read that men didn't need them.  I will start up again.

If I have another long 'crash' I will drag myself in to see the doctor.  My cardiologist and PCP have tried to look for the source of my sudden fatigue but stress tests and blood tests always show 'no problem' except of course for my AFIB.  Maybe it's simply because I'm not in 'crash' mode when I see a doctor.     

I'm not anemic or hypothroidal.  But I haven't had a specific test for thal minor in 25 years and I will request a test from my PCP for hemoglobin, hematocrit or Hb level.  It would be helpful if he could find a problem there and acknowledge this to my cardiologist.

Thank you all.
John

Since you haven't tested for a while, ideally you should do a CBC, chemistries, a full metabolic panel, and complete iron studies (or at least a ferritin test). I do that once per year as a baseline. A lot can change in a year as we age.

thanks marientina. 
what's CBC?  Is it 'comprehensive blood chemistry' or something like that?
John

CBC is a complete blood count.