19yo & Newly Diagnosed

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19yo & Newly Diagnosed
« on: March 09, 2011, 12:28:20 PM »

I'm a 19yo female that has been recently diagnosed with thal b minor. I was tested as a child but because my iron levels were so low it was missed - musn't have been DNA tested now that I think about it... Never the less, I have quite a few questions regarding my diagnosis and would like to ask them here.

I've read that thal b minor people don't have symptoms but when I read other symptoms majors (alpha and beta) have, some of them relate to me. I saw a haemotologist today that said my skin colour corresponds to a haemoglobin level of around 80, not my current level of 110ish. I was wondering if anybody else has been told this? Also if there are any other beta minors out there that get symptoms that would normally indicate major?

My most recent iron studies are as follows:
Iron: 13 umol/L
Transferrin: 2.9 g/L
Trans Sat: 22 %
Ferritin: 37 ug/L

and the one before:
Iron 4.3 umol/L
Transferrin: 2.8 g/L
Trans Sat: 8 %
Ferritin: 40 ug/L

Is it normal for iron and trans sat to go up, but ferritin to go down?

My most recent bloods are:
Haemoglobin: 111 g/L
RCC: 4.9 1-*12/L
Haematocrit: 0.35
MCV: 72 fL
MCH: 23 pg

May sound like a silly question but what do these all mean? I really have absolutely no idea. The doctors just tells me my iron is low so I have to eat more red meat and take iron supplements, so I do and my iron levels will decrease (don't have any previous test results with me but I can remember it being as low as 1.9 umol/L whilst taking iron supplements), or the doctor just point out all the bits that are low and leave it at that.
Could my thalassemia be causing problems such as my shortness of breath, paleness, yellow tinge to skin and enlarged spleen to name a few?


Offline Andy Battaglia

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Re: 19yo & Newly Diagnosed
« Reply #1 on: March 10, 2011, 04:16:15 AM »
Hi bufly123,

All of your iron levels are low. The combination of the three all being low does indicate iron deficiency. Ferritin levels change constantly and are affected by any infection, like colds and any inflammation, so ferritin levels are only used for relative guides. The other levels are more significant and your low serum iron definitely shows an iron shortage. Yes, "shortness of breath, paleness, yellow tinge to skin and enlarged spleen" are all related to thal minor and the shortness of breath is also related to the iron deficiency adding to the anemia. Thal minors have a mix of good red blood cells and smaller irregularly shaped, less or non-efficient at producing hemoglobin, which carries oxygen throughout your body. As a result, minors often experience shortness of breath and fatigue due to a lower oxygen supply. These defective red blood cells are filtered out of the body much more quickly than what is the normal life span of RBC's. This filtering takes place in the spleen and the spleen will enlarge as a result. A by-product of the breakdown of RBC's is bilirubin. When the bilirubin level rises, it causes jaundice which will be seen as a yellowish tint to the skin. This may be what the doctor was referring to, since at your Hb level, it would not be so common to see this skin tone. Usually, the HB needs to be lower to see a blood turnover rate where the bilirubin levels would rise enough to color the skin.

It appears that you have both conditions contributing to your anemia, and in spite of eating iron rich foods, your iron levels don't improve. Your red blood cell count is normal, which is normal for thal minor, but would be expected to be low with iron deficiency. There are normally three reasons why one would be iron deficient. Inadequate dietary intake, under-absorption of iron in the gut and excessive bleeding (sometimes heavy periods are at fault). I always recommend that thal minors try to adhere to a nutritious diet and avoid empty calories as much as possible. In addition to red meat, foods like green vegetables, whole grains, dried fruits and nuts and wheat germ all are good iron foods. Take vitamin C or drink citrus juices with your meals as this aids iron absorption from food. Avoid drinking tea with meals as it inhibits iron absorption. Avoid antacids since they also block iron absorption.

I think that your thal minor is adding to the iron problem and that your iron deficiency is not caused by one of the classic causes, but rather an ongoing depletion caused by a high rate of RBC turnover. You definitely show signs of hemolysis, the destruction of RBC's, with the enlarged spleen and skin color that indicates a higher than normal turnover in blood. I am not certain you are not getting enough iron, but what may be happening is that the thal is causing your red blood cells to be destroyed at a rate that is depleting your iron stores because your bone marrow is constantly working to replace RBC's. So perhaps approaching this from the point of view of thal minor, in addition to getting iron from your diet, would be beneficial. Thals should take folic acid daily, as should all women of childbearing age. 1 mg per day minimum. This is needed to build red blood cells and is as important as iron. The following can help prolong the lives of the RBC's by helping to maintain the health and integrity of RBC's. Magnesium (never take calcium without magnesium. They are needed in balance. But you can take magnesium without calcium as long as your diet is healthy). Take a B-Complex vitamin daily. Natural vitamin E. Vitamin C. By prolonging the lives of the RBC's it will slow down the hemolysis, which will help decrease the spleen size and also help normalize the bilirubin level. Most importantly, this can give your body a chance to keep up on RBC production without depleting your iron stores. I think there is some evidence to back this up with your red cell count. I think iron deficiency is making this level look normal when it may actually be high. The enlarged spleen also backs this up. I think you are producing a high enough amount of red cells that it's keeping your iron stores constantly depleted, and iron alone is not the solution. One more suggestion is to avoid fava beans and chemical fumes like moth balls and even dryer sheets because they can cause hemolysis.

All we are saying is give thals a chance.


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