looking for some help and guidance

Hi, was hoping someone could give me some advice on Beta Thalassemia Trait. Not sure if anybody on here is from the UK but it sounds like you all get the same response from your Doctors that I get in that Beta Thal does not have any symptoms!! I have always suffered with bad joints especially my knee. Having had 14 operations on my knee of which yes some are due to injury I never appear to benefit from surgery and the pain/ aching continues. Other symptoms being tiredness and headaches. I,m 42 now and have suffered as long as I can recall with no help anywhere being offered. I am also the father of 3 children of which 2 also have the trait, even though I was always told it was impossible for me being the father to pass this on to my children!!! I currently take no medication at all for the trait. Just wondered if any one else has experience anything similiar and found anything to relieve any of my symptoms. Many thanks for your time, Mark

Hi Mark,

Welcome on the forum,i am also a thal minor,tiredness and headaches are the most common symptoms among thal minors,heamoglobin being the carrier of oxygen in the body,if heamoglobin is low,you'll not get enough oxygen and get easily tired.Have you ever checked your HB levels?
Taking supplements can give you a dramatic change,though it won't be overnight change,but you'll definitely feel a positive difference in your energy levels.All thals,wether minor or major are advised to take folic acid daily,in your case wheat grass might help,my daughter is a transfusion dependent intermedia and i felt a definite upward change in her energy levels when i started giving her wheat grass.You can buy it online from www.drwheatgrass.com .it comes in the form of super shots.
Another natural product members of our forum have tried recently is carao fruit syrup,it has helped my daughter maintaining her hb for 4 weeks.it is said that it has showed very positive results in thal minors.You can read more about it here

http://www.thalassemiapatientsandfriends.com/index.php?topic=1259.0

http://www.thalassemiapatientsandfriends.com/index.php?topic=1791.0

And you can order it online from  www.tropicalhealthfoods.com.

I am sorry i don't know much about your knee problem,Let's wait for Andy to comment about it,also are you taking calcium and vitamin D? It is a must for bone health.
I hope you know that if two thal minors are partners and they opt to start a family ,there is 25% chance in every pregnancy that they can have a thal major baby,how old are your sons,inform them about this when they grow up,so that one day when they want to start a family they can get their partners checked for thal trait.I hope this helps.

take care,

Zaini.

Hi Mark,

Did you contacted UKTS www.ukts.org ? You should give them a call and ask for help.

I am afraid that I can't answer your questions.

Best wishes from the Netherlands, Dore

Thanks both for your advice. Will take up on it and hopefuly feel some benefits!!

hi moorty,
 i hope this link will b helpful for u ... please check this link as welll ....
http://www.thalassemia.com/thal_trait.html


Umair

Hi Mark,

Do you know what your hemoglobin level is? Your symptoms are commonly reported by thal minors as they age, but I don't know if there is any specific connection between thal minor and joint problems. We do hear about joint problems in older minors but joint problems are more common in general as people age, so it is hard to say it is thal that is the cause.

This is the second time recently that I heard of doctors saying males can't pass on thalassemia. If this was true there would be no thal majors. Doctors in general won't be much help to a thal minor though, as most don't believe minors have symptoms. I do think you can benefit from supplements and being a minor, you can safely take vitamin C, which may have a positive effect on your immune system and your ability to heal. Look through our section on thal minor for more about how to manage. http://www.thalassemiapatientsandfriends.com/index.php?topic=1575.0

Hi Andy,

not sure what my hemoglobin level is at present its such a long time since it was checked. I noted on a test dated when I was a lot younger (4-6) that it was about 4-6 but when I questioned my doctor recently about this it just said it must be a mistake. From what I can recall its normally about 11 and lower. My Doctor like all Doctors I feel just dismiss Thalassemia as having no side effects. However recently I feel like things are getting worse for me ie tirdness, all over ache and pains and symptoms that I've suffered all my life. On a positive note not sure if this is of any help to anybody but noted a symptom of Thalassemia is headaches, I have always suffered from headaches from childhood but on a recent visit to a specialist I was prescribed amitriptyline on a 20mg basis taken at night, I cannot believe how much these tablets have helped me. I usually had a headache every day but since being on these tablets I have not had any now for the last 4-6 months, apart from the alcohol induced ones lol. Hope this benefits someone.

Thanks 

Mark

Hi Mark
     i sujest you visite Prof. John Porter in universty college hospital in LONDON he use to treat my son Abdulwahab when he was 4 years old .. he will do all test for you ...
              :khalifa