suggestion needed.

Hi..  I thank to everyone who reads this.  I am 21 y/o girl.  I have seen with one hemotologist for a year and she told me that I have Hb H and it can be taken care by good diet and folic acid. Today,  I went to see another hemotologist at another hospital and realized that Hb H disease is not minor( I've always thought as minor), it is Thal Intermedia.  Lately, I have researched about it online,  although I still don't get good answer.  So, I better ask to real life people who are patients as me. My latest hemoglobin count is 7.9 ( I recently had infection and bad fever). I normally have around 9-10.  This new doctor told me to take "Fer-In-Sol" which seems to be an iron supplement but my old hemotologist strongly advised me to avoid eating/taking either food or multivitamins that includes iron.  I am confused.  What should I do?  I can't find ferritin level in my complete blood test.  I am not sure if doctor has checked my spleen.  I wonder if it can get worse and turn to thal major?  Luckily I do not need transfusion now but will I get worse and need in the future?  Although I don't have any plan to get a child in 5 years ,  doctor warned me that it will probably become a big problem when I decide to get a child.  Do thal patients have better chance to miscarraige? Both me and my partner were premature babies.  He also catches flu and cold easily but never bother to find out about if he is a carrier.  I am afraid if I cannot get a child or my child will have life-threatening blood disorder. I will write more later.  I'll be glad to read anyone reply.  Any answer is appreciated. Have a nice day to y'all..

Hi,

I am a thal minor myself,i am sorry i don't know much about HBH,Please check this thread ,Andy's posts in this thread might help you.

http://www.thalassemiapatientsandfriends.com/index.php?topic=1672.0;highlight=hbh

Another post    http://www.thalassemiapatientsandfriends.com/index.php?topic=1772.0;highlight=hbh

Three gene deletion means that only one of the alpha globin genes in functional. This results in HbH disease, which is quite variable in symptoms. Some with HbH have moderate anemia that does not require transfusions and some become transfusion dependent because their hemoglobin level is too low to maintain good health. HbH is similar to beta thal intermedia in some respects because of this wide variation in condition. Typically patients have moderate anemia that may worsen as they age, leading to transfusion dependence in the second or third decade of life. Some with HbH will never need to transfuse, although it may be occasionally necessary during times of illness or physical stress. Those with HbH should avoid oxidants, chemicals and foods such as sulfa drugs, benzene, and fava beans, as they can all stimulate increased hemolysis (destruction of red blood cells). Daily folic acid supplements are the main course of treatment for non-transfusing alpha thals. Care should be take to avoid oxidant food and drugs and regular medical monitoring and treatment is necessary. Hemoglobin H has a high oxygen affinity which means it does not let go of oxygen as easily as normal hemoglobin, so Hb levels may be misleading. Transfusion should be based on physical condition rather than depending on Hb levels as the Hb may seem higher than it functionally is for the patient. Iron absorption from food is not a big problem for alpha thals normally but those who transfuse must undergo chelation treatment, just as transfusing beta thals. Iron supplementation should be avoided as it can add to the iron load and will not help the condition. Splenectomy is often used in transfusing patients to help reduce transfusion frequency. Infections should always be attended to promptly, especially if splenectomy has already occurred. Infection can lead to lower Hb, the same as seen in beta thal, so it should always be taken seriously and dealt with promptly, to avoid any further problems. HbH patients with low Hb may develop the same skeletal abnormalities seen in beta thal and transfusion is an option to help avoid this. Because HbH involves three deleted alpha genes, it is not recommended to have children with another alpha trait carrier, as the chances for severe problems in the children are significant. Genetic counseling is highly recommended.

What test did your first hemotologist order to check your thal status? I don't know if HBH is easily diagnosed,because thal intermedia is a bit tricky to diagnose,DNA test is the ultimate way to know exactly your thal status.

Your hb seems to be quite low,but with in intermedia range,i don't know if a minor's hb will be that low due to fever or infection.

You should definitely check your ferritin levels ( complete iron studies will be a good idea) before taking any iron,if you tend to have chronic low hb,body starts absorbing more iron from the gut automatically,so it's not necessary that you have low iron.

Hope this helps.

Zaini.