Beta Thal + Iron Def = Confirmation

Is it possible for you to get all the iron readings? Her ferritin is low but her serum iron is not. The other readings would give a clearer picture of her true iron status.

Don't expect doctors to understand thal minor. Almost every source they refer to will tell them it has no symptoms. This is very frustrating but it is a reality thal minors have to deal with, so taking matters into your own hands and ensuring good diet and nutrition become very important, as you know. Even in non-thal issues you will often see that doctors are not adequately informed. In the course of two years, my own doctor went from saying don't take more than 100 IU of vitamin E daily to saying don't take more than 100 IU of synthetic vitamin E daily. I have taken 400 IU natural E daily for over 35 years, so I never paid any attention to his first advice, hut I was pleased to see him later qualify that one should not take more than 100 IU of synthetic E daily. (In my opinion, any synthetic E is useless. It is a by-product of the film industry and not truly suitable for humans). Often, we have to rely on our own research, rather than the doctor's advice. They are not always up on everything and my life has taught me that most doctors are not properly trained in nutrition, nor do most make an effort to stay up on current research. I don't want to say that doctors are not doing their jobs because there is a tremendous amount of information that doctors do need to learn, so expecting everything is usually more than is reasonable, so we have to make our own efforts to keep ourselves informed about how to stay healthy.

Dear Andy,

Awhile back you mentioned being able to look at iron study results; well, wouldn't you know I did not bring the numbers with me, but basically found that depending on which lab ranges I go by that I am below normal on iron saturation either lab range, and according to one lab from previous testing, also below normal on ferritin and iron.  I used a different lab this time and was at the lowest end of normal on ferritin according to their range, and low end of normal on iron. 

I will post the exact results and ranges shortly [sorry], but what do you say about the disrepancies between lab numbers' ranges from 2 very reputable laboratories in my area [one is a national lab corporation, and the other a well respected teaching hospital in my city, US].

Thanks a bunch!

There are various reasons that test results will vary. Different blood samples at different labs with different techs, all lead to possible explanations. Tests done at different times can yield different results as conditions in your body change. Serum ferritin fluctuates regularly, and is not a good indicator of iron levels by itself, so the tests are looked at as a group, and the physical condition of the patient is also added to the equation. Iron testing  is not an exact science, and results can also be misleading. I believe you mentioned celiac disease previously, and any digestive system disorder can cause absorption problems, which can lead to low levels of many vitamins and minerals. Iron is fairly harsh as a supplement and may not really be a good idea for someone with digestive issues, so it may be best to look at this as part of finding a diet that does not aggravate the condition, while providing proper nutrition. If your iron is on the low end of normal, you may want to avoid supplemental iron. And I should add that when different tests yield conflicting results, this usually leads to more tests to corroborate a previous finding.

I am a thal minor.  I am 49, and was diagnosed at 15.  To begin with, I had deadly amounts of iron in my body due to treatment for iron deficiency anemia which was what my thalassemia was diagnosed as throughout the 60s and until '76 at diagnosis.  This was successfully removed using experimental treatment for the time.  In about 1993, so about 17 years later, I actually experienced iron deficiency anemia, and know this was true because of what I had been through before.  The doctors had a hard time treating it, but, obviously, were successful.  Now, it's been another 17 years without iron deficiency.
This site has given me my first association with people who have thalassemia and someone such as Andy, who is such an expert on this disorder.  It appears iron deficiency happens to some of us and I hope to learn more, in case I face the situation again, but, I would like to encourage anyone dealing with it that having it happen once does not mean it will begin to happen all the time.
Wishing you all the best, OldThalGal

Hi Andy and Tammy,

Thanks to both of you for replies, gives me alot to think about, and some more questions as well. 

Celiac is not a confirmed dx. with me, but in my area there is alot of attention being brought to awareness that many times, persons who get diagnosed with fibromyalgia and CFS have underlying nutritional deficiencies, and there are many theories as to why.  Ruling out Celiac is one, and the many issues with the GI tract that commonly occur with Fibro./CFS that may not be Celiac, but have to do with 'leaky gut syndrome', etc.  Infections is another theory. 

It is mind boggling, and a family I know with several generations of Celiac Sprue and much experience from dx. to management say that it is often necessary to do specialized testing beyond a blood test.  The test ordered for me was transglutaminase, though other doctors say that a confirmed dx. of Celiac would require anti-endomesial antibody + tissue samples with a scope.

Anyway, will follow up when I have a little more time, and thanks again to both of you. 

Andy, are there any other reasons besides thal minor that could cause microcytosis on the CBC [abnormal levels on RBC, MCH, MCV, etc.], such as iron def. anemia or other?  Reading Tammy's entry makes me wonder...?

Yes, iron deficiency is the top cause of microcytosis. A study of the subject found the following.

http://www.ncbi.nlm.nih.gov/pubmed/8698132

Microcytosis is a highly prevalent finding during blood examination. This study investigates the causes of microcytosis (defined as mean corpuscular volume (MCV) < 82 fl) in 466 patients referred to our laboratory for suspected hemoglobinopathy. The following data were obtained: Hb, MCV, serum iron, transferrin, ferritin, HbA2, HbF, isoelectric focusing of the Hb, gene mapping of chromosome 16 with Xba I and Bgl II and hybridization with an alpha- and a zeta-probe, inflammatory status. Results show that iron deficiency remains the first cause of microcytosis (35.2% of our patients), even in a selected population such as ours. Deletional alpha-thalassemia, probably the most frequent hemoglobinopathy throughout the world, represents the second most frequent cause of microcytosis (31.1%), followed by beta-thalassemia heterozygous state (18.9%). Of our patients, 1.3% had microcytosis due to the presence of an abnormal hemoglobin (HbC, Hb S/C, HbE). Three cases (0.6%) had other possible causes of microcytosis. Of the remaining 60 cases, 28 had an inflammatory state. Finally, 32 cases (6.9%) remain unexplained; taking into consideration the origin of these cases, their hematological parameters and their family history, we postulate that these cases are at high risk for non-deletional alpha-thalassemia.

When iron deficiency is present, it is important to find out why. If the diet hasn't been low in iron, other factors need to be ruled in or out as possible causes. Vitamin C taken with iron rich meals helps in iron absorption. There are factors that inhibit iron absorption. We have mentioned celiac disease. Other intestinal disorders can also be a cause of low iron due to poor absorption. Tea can prevent iron absorption, so avoid it with meals. Drugs like Prilosec and other antacids should also be avoided. Exposure to lead also prevents iron absorption. When the other factors are ruled out, it will usually bring the doctors back to suspecting intestinal issues which can interfere with absorption of nutrients.