Hi,
I am a mom of a 15 year old boy who has been diagnosed with BT minor. We are from Mexico and live in Mexico, so please forgive my English mistakes. I am trying to find out all the information I can about this disease. I want him to live as good as he can withi his condtion. I found this wonderful forum and I have read many of your posts which are really interesting fo me, so I will really appreaciate your help.
He started with legs pain two years ago, at the begining I thought his shoes did not fit any more so I bought him new shoes!! Later on as he continue to complain about this, and as I am a nurse I thought he has an infection in his throat so I took him to a lab to make him some blood and urine tests, and he did not have an infection but he has high uric acid, like if he has gout, he also has a light anemia, normal hemoglobine but his MCV was low, and he had a lot of eritrocytes, and also he had all the triglicerides and cholesterol very high, and some strange numbers in his urine studies, so then I took him to a doctor and he told him he has metabolic syndrome, he was a little fat, so he started with a diet and to do excercise. A month later he had lost weight, all his cholesterol and triglicerides went down but the uric acid was more high than the last time. The main issue here was they never saw the anemia, I ask the doctor about it and he say this was not important!! So I change the doctor. Since then I went to 5 doctors, make him the same studies every two months for the last two years, all with the same results: litlle anemia, high uric acid, some urine problems, but no cholesterol as we continued with the low uric acid diet.
I was worried because he is very little to have all these!!! Nobody ever mentioned talasemia, all of them declare him with methabolic syndrome, until this last doctor, he just saw all the lab results we have until know and he say: "He has BT minor, and this is causing him renal problems. Many people with BT minor has renal disfunction, so we need to control his anemia and his kidneys. So he sent him more studies: bone density and more lab tests for his blood (an iron panel, hemoglobine electrophoresis, glucemia, insulline, vitamine D and so on) and a complete nuclear medicine study for his kidneys. He told me after all these are done he will control him with medicines, not iron, just folic acid, and a diet designed by a nutriologyst.
When I came back home I look for all the information at the web that I could find about BT and I did found out that BT minor can come with gout too, and with tubular renal disfunction and they are some cases reported also with methabolic syndrome. I found out this information in some medical journals, reumathology journals, and nephrology journals and all what this last doctor had told me looks true, at least it has been studied by other doctors in other countries, all the numbers in his blood tests and urine test confirm it. So for the first time in this two years I know what he has.
Let me tell you that before this, eventhough I am a nurse I have never in my life heard about Talasemia, it is not very common in Mexico, now I have read that indigenous peoples does not have it at all and that the mexican population that has it are descendants from greeks or italians, or from Siria. So I really do not understand how can he inherited this, but as I told him, genes are like a lottery, some body wins it!!!
The main problem for us is the diet, as almost all food have uric acid, so the doctor thinks it will be better controled with alupirinol, than with the diet. In this two years we have learn they are certain foods that increases his uric acid problems: pork meat, food that contains fat, and salt.
So knowing a little more about BT minor, I have many questions, for example: can he eat food with iron? Like beans for example or spinachs. Or if the anemia going to be there fore ever or it could be controled with folic acid? Does any of you have uric acid problems, I have read it is rare, but I have also read BT minor is not so much studied as Mayor and intermedia. It seems they are just starting to look into it.
Now that I know this I understand the many things he has told me in the past: he has head aches some times, he feels tired, he has ask me: why am I always tired? He has this legs pain which improved after we controled a little the uric acid, he has low pressure, and he is losing his hair very early. But he has a very good humour, is very good in math, he has lots of friends and now he loves his gimnastics class. If you see him you would never think he has all these!!
My main objective is that he learns how to deal with this desease, to overcome it as much as he can, and too prevent all damage he can have in his kidneys. I can share the information I have found out about gout, renal tubular disfunction an BT minor too if some of you want it.
Well thank you very much for your help.
Laura
Mexico