So relieved to hear that I'm not alone suffering from symptoms of Beta Thalassemia Minor (BTM).
I'm 19 years of age, and was diagnosed with BTM since birth. My mother has it, and so have her all her sisters as well as my maternal grandmother.
In terms of appearance, possibly due to BTM, I have always had dark circles under my eyes regardless of how much sleep I get - it's really annoying when people keep telling me to get some sleep even though I normally sleep more than everyone else. What's queer is that those circles occasionally disappear when I get the least sleep. I have the darkest skin complexion in the family and can get tanned very easily. People close to me can't help but notice that I seem to have a non-maturing "babyface" and that I look about two years younger than I actually am - great for women but it's not something to boast about especially if you're a guy. I'm not sure if this has something to do with lesser effects of bone deformation that Major patients suffer from.
Symptoms-wise, I have always had the dreaded chronic tiredness/fatigue that nearly everyone mentioned here. I used to sleep for 10 hours every day during childhood and I need 8 hours per night currently. I also get tired easily and find it extremely difficult to wake up in the early morning. My sleep patterns have never been routine - I tend not to be able to sleep until late in the night and get up just before noon or after. I always seem to have this cotton wool feeling in my head, as if a cloud is trapped inside. During exercise, I have always been least fit, going out of breath really quickly and having low endurance in strenuous activities like middle-distance running, due to tiredness. In relation to depression, I have always felt less enthusiastic about life compared to others and pessimistic in general. During childhood, I was like a complete introvert with extremely low confidence and highly emotionally dependent on others. Currently, I tend to have emotional swings when I'm tired and have occasional crying outbursts towards people close to me. Other than that, signs of depression have gotten a lot better than what I had as a kid. About cold feet, I tend to get it a lot though it doesn't bother me at all. In the past, I used to wear more than everyone else - in primary school, I wore 3 to 4 layers of clothing during winter when everyone else wore like 2. It's really strange now though, as I'm not susceptible to feeling cold anymore over the years, often wearing less than most in winter months.
Doctors should really take BTM much more seriously. I get the usual yada yada about more exercise, sufficient sleep and meals with no help at all. Blood tests, urine tests and health check-ups all say that I'm completely healthy and normal - all apart from having BTM, which supposedly does not require any attention at all, and that I'm "just like a normal person", as told by nurses and physicians.
There isn't much information on the Internet about BTM, apart from blood transfusions for Major patients and articles about illnesses with similar symptoms. Someone else earlier mentioned treatment by Chinese medicine: http://www.itmonline.org/arts/thalassemia.htm - I might give this a try. To me, it sounds like the only proposed treatment on the web, though I would first clarify this with a Chinese medical doctor. I've tried iron supplements recently which have alleviated a bit of tiredness though I stopped after having serious side-effects like nausea and black stool. Not sure whether I should try it again as iron supplements are supposedly relatively toxic to Thalassemia patients with iron building up easily in the body.
I really hope doctors would give more research into BTM as it has substantial symptoms. I'm still in search of some medication or diet that would alleviate tiredness/fatigue, and of course for BTM in general.
Any help would be greatly appreciated.
I am 40yo and was diagnosed with BMT when I was 22. I too suffer with chronic fatigue. I take power naps throughout the day to rejuvenate. My diet consists mostly of fresh fruits and vegetables. I can tell the difference when I eat too many processed foods. I also have the cold hands and feet, but here lately I have also been experiencing numbness in my finger tips. I take vitamin supplements but only take them every other day. When I took them everyday, I felt crappy. My doctor has told me to not only request iron and hemoglobin levels but to also request my "total iron binding capacity" (TIBC) and "ferritin iron binding capacity" (FIBC). She says this will give a good indication of oxygen and iron binding capacity. I find that when these are low, I'm more dizzy, light headed and fatigued. I try to always rest when my body tells me to otherwise it shuts me down. One thing I have found helpful when I am working under stress is to get in some excercise...nothing heavy unless you can handle it. This is in addition to an ample amount of recuperative sleep. I am also concerned about the connection between BTM and thyroid conditions. I eat small portions. Eating a "normal" sized plate of full makes me uncomfortable and sluggish, not to mention that I can gain weight from smelling food in the air! I now wear glasses to help me focus better. I also have heart palpitations. One thing I have a concern about and have not seen it posted are problems with your lungs. I typically do not catch colds or the flu...but when I get sick, it is usually in the form of bronchitis or pneumonia. Prior to it progressing to this state, I feel like I can not get a good, deep breath of air into my lungs. The fatigue that comes from this is astounding. Is anyone else experiencing this?
I was diagnosed with thallasemia minor 1 year ago. I could'nt stand the fatigue and tiredness anymore and knew something was really wrong. I took me two childbirths to finally complain about all the same symptoms all of you are complaining about. So I really believe each childbirth really took it out of me...I love to run and find it very depressing that I can't run for more than 1/2 mile without getting fatigued. It took a lot of blood work to finally find out my diagnosis. It is very frustrating for me not to be able to function like everybody else especially when there is just no cure for this horrible tiredness and fatigue. I really hate the feeling of just not feeling energized ever. I go to bed tired and get up tired. I need to take a power nap every day otherwise I am to exhausted to act normally for the rest of the day. My husband is a 4 year medical student and the first thing he said when he looked up my lab work results was: "You are screwed!" And the truth is we are but we just can't let this blood disorder take over our lives. I try to be positive about it every day and make the best of every day. I am quite upset that I might have passed on this disorder to my first born since 1 out of every 4 children born to us can get this disorder. He acts tired, out of breath and is only in the 10% on the growth chart. He will be 5 years old in September. I am so glad I am not alone and appreciate all your comments...P. S. I am from Spain and my Mom has the sam disorder.
I am 22 years old and have known I have had Thal for aslong as I can rememeber. I inherited it from my mother who inherited it from her father (Italian decent). I completley understand what you are all going through
I am constantly tired no matter how much sleep i get and I never go out because of it. My face is always pale. I get dizzy spells whenever I stand up. My hands and feet are constantly cold no matter what I always have to wear heaps more layers of clothes even in the summer and when I go swimming I turn blue! Whenever I exercise my lungs feel as though they are going to rip out of my chest and I have the poorest memory sometimes I cant even remember what I had for breakfast! And the worst thing about this is I look so young everyone thinks i am either 15 or 16 which doesnt help to much when you are trying to find a job. I also always have bruises all over my body the slightest bump and I get a massive bruise. And last but not least I have had my eyes tested and apparently have near perfect vision but for some strange reason when Im driving at night I find it very difficult to see. The list goes on and I dont want to bore you all with my symptoms which according to the 'experts' there isnt any (****!)
on the bright side of things im not to sure if it is true but my nonno (grand father) has told me that Thal actually makes you immune to maleria I guess thats a good thing in a way if its true!
I think more research needs to be done for all us Thal minor victims!
May God bless you all....
I Have been diagnosed with BTT for about 10years now my mum has it and so does 1 of my sisters and brother but they are fine. My mother has to always go into hospital cause her Hemoglobin goes down to 4.8 and they give her a blood transfusions then shes ok for a few months and it starts again. the docs say theres nothing we can do but keep transfusing her. My hemoglobin is 105 and iron is 8 which is low i am ALWAYS tired have headaches and feel dizzy because am a vegeterian its hard for me to chnage my diet i eat lots fruit and veg and celery and beetroot is good for you too. But still am tired. the doc has given me iron tabs to take but when i take them i get constipated when i went back to the doc he suggested iron injections but i heard the injections really hurt in the winter so i cant take them. I have tried keeping myself active trying to eat much healthier i eat eggs which are good and lots fish so hoping my next ion count will come better.
Good luck to you all and if anyone finds some cure to the tiredness please do let me know.
i too was diagnosed with Beta Thalassemia Minor (BTM). i was in 3rd grade when i was hospitalized and found out i had this problem. i was tired all the time too but seem to over come it. as i got older during my teen years i would pass out if i didn't eat right. i found that as long as i ate small meals several times a day i was better off. later on i married, we had a baby during that time i was really tired and i ended up having my baby a 6 months he was 1lb 14oz. i had toxemia or pre-eclampsia i was so bad that i lost my site before i had him. we both almost died. two years later i found out i was having another baby. i carried her longer i was 8 months along when i got toxemia or preeclampsia again witch the doc said was impossible for it to happen again. i also had gestational diabetes. that was not fun i felt like i was starving to death i had major high blood pressure too. some how God seen fit for both my children to survive. during all of this my normal weight was 98 lbs. unless i was with child which i would then be 150lbs. i lost all that weight in less than a year. latter in life around 31 years. i started having problems with circulation in my legs. i started getting sick more often. i started getting even more tired than usual. i started having heart palpations. it is hard to keep a job when you are sick all the time. i am a single parent and don't know how in the world i will support my children if i can't work. now I'm 33, i have had pneumonia for 4 weeks and still have not gotten better. i get sinus infections all the time especially during that time of the month. i have had my share of migraines during that time of the month too. now they are telling me that my thalassemia may be getting worse. i didn't think it could. now my heart palpation are very offten. i have at least 5 a day. i don't know if i will see tomorrow. my doctor was suppose to let me know and every time i call it seems like no one knows the answer to that question. it is almost like he is avoiding me and my question " is it worse or not" what is going on. i have two kids depending on me their father left me 9 years ago. no child support left me with all the bills. my credit is no good also thanks to him and i have no health insurance. i need answers and i need them now!!!!! any one know the answer to this please let me know.
need help now