Thalassemia Patients and Friends
Discussion Forums => Thalassemia Minor => Topic started by: tammysjourney2009 on September 05, 2009, 01:31:40 PM
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I recently had iron studies done and confirmed that I have both Beta Thalassemia Minor and Iron Deficiency Anemia. I was give a 1000mg of iron by IV 2 weeks ago b/c my ferritin level was down to 6. I really don't feel much different yet. Was suppose to see doctor yesterday to see if my ferritin level increased after the iron, but he had to reschedule my appt - so I am going on the 18th. They are still running other test b/c not sure why my iron is being depleted. I am being tested for something called Sprue or Celiac disease - a disease in the small intestine that can cause iron deficiency. These ongoing health issues are really wearing me out :(
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Hi Tammy, Im checking the forums before I get my sleep. I would like to answer your question, but I'm a little too tired to write everything I know here now. I'm sure more educated people will answer. If not, it's only because it's weekend. Best wishes, Dore PS is celiac disease not related to cereals allergy?
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Celiac disease is related to grains, especially wheat and is also known as gluten intolerance. Avoiding wheat and looking for gluten-free foods can give you some idea if this is the cause of your problems. The absorption problem created by celiac disease can cause deficiencies of many nutrients including iron, so this should definitely be investigated.
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I am one of those thal minors who is symptomatic, AND have had long standing low ferritin levels. There is no thalassemia center here, and I have only encountered doctors who do not recognize 'trait' as having clinical importance to date.
There have been one or two studies that I found in researching this, perhaps in Pakistan or that region of the world, that found that sometimes these two things [thal. minor trait + iron deficiency anemia] coexist.
Is it safe to assume that one should definately not take iron in thal minor because we really have not been studied to see long term effects of possible increased iron absorption?
This summer I began taking an elemental iron supplement faithfully because I am so tired of being tired and having my hair look like I have had chemotherapy [well, not that bad, but this situation gives a whole new meaning to a 'bad hair day'!].
Whether it was related or not, after about 2 months I had serious swelling in my legs, and got off the iron after some blood testing; after about another 1-2 months, the swelling subsided.
For now I have been told not to take iron.
There are other health issues I have been diagnosed with for which low ferritin is commonly diagnosed [celiac and gluten intolerance are often found as well in persons with CFS and fibromyalgia...no positive dx. for celiac in limited testing done so far...].
Andy or anyone with knowledge on this, reply would be greatly appreciated!
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I'm a beta thal minor and I have iron deficiency at times too. My hemoglobin and ferritin are always low, even when I am on iron supplements. Usually both around 9-10.
I have not been tested for celiac disease but I stopped gluten foods since I felt they were making me sick. Since then my iron levels seem normal too, though I will get tested regularly and take supplements whenever required. Overall too, my health and energy levels are better, I feel like my food is finally being absorbed in my body!
If you're gluten intolerant, i assume you might have other symptoms too, like IBS or more? Andy might know better.
Andy?
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Ferritin tests alone are not a reliable indicator of iron deficient anemia. A complete panel of tests called iron studies, should be done to assess whether or not it is really iron deficiency. Low ferritin may indicate other problems but unless corroborated by iron studies, iron supplements should not be taken, as long term iron use can cause many problems if iron is not needed.
Celiac disease can cause iron deficiency due to malabsorption of nutrients but anemia is unlikely in IBS unless there has also been bleeding. Both syndromes are difficult to diagnose and are done through a checklist of assorted symptoms and test results. A competent gastroenterologist should be able to make a diagnosis. Because celiac disease does cause absorption problems, it should not be assumed that low iron is the only cause of anemia, as both folate and B-12 can also be under-absorbed, leading to anemia. However, the path to correction is not just taking supplements. The main focus of treatment for celiac disease is removing gluten from the diet. Once this is accomplished, absorption of nutrients can become normal again, reversing the anemia.
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Andy, do you happen to know what iron studies include? Would you possibly be referring to ferritin, iron, TIBC, transferrin? Are there any other tests in the iron studies panel? Thanks! :huh
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Full iron studies include:
serum Iron
Transferrin
Transferrin Saturation
Ferritin
Total Iron Binding Capacity (TIBC)
Hope this helps
manal
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Thanks, Manal
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P.S. Can one assume that if these tests are below normal range, that this is actual iron deficiency?
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The tests have to be considered together and not all of them show iron deficiency with low levels. If you have a set of results, I can look at them for you.
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Thank you, Andy. I will be getting some results soon, and that would be great!
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Hi, have you done those tests already? Received results? We hope to hear from you soon. I hope you are doing well.
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I want to add something about the iron panel. Together, these tests can give a pretty good idea of one's iron status, but no blood test or group of tests will be 100% definitive. A biopsy may be the only way iron could accurately be measured but this also has its limitations and seems to be overkill for determining iron deficiency. A two week test of taking iron should quickly tell one if their symptoms can be improved with iron supplements. Low ferritin does not necessarily mean iron deficiency even though most doctors will treat it as such. I tend to feel that iron deficiency is far less common than believed and for good reason. Our bodies have no natural way to remove iron. We lose about 1 mg iron daily from loss of skin, hair and blood, but 1 mg is far less than what we take in daily through diet, so it seems that it would be very difficult to actually be iron deficient without significant blood loss. On the other hand, there is tremendous evidence that people have too much iron in their bodies, as bacteria, viruses and cancer all thrive in a high iron environment, which has to make one wonder why iron is pushed so much.
Thalfriend, if you took iron and you felt worse while taking it, there is a very good chance you don't need it. Have you had the iron studies done yet?
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This is just a tiny little vent. I called my daughters pediatrician to go over the supplements I would like to give her and talk about a plan for her symptoms. I let her know that this visit will be about the thal confirmation so that they can get a copy of the paperwork. Her nurse called back and tells me that while I'm waiting for my appt in 3 weeks I need to make sure that I'm giving her a multi w/iron everyday. I let her know that her Doc from the blood disorder clinic says a low iron diet for her...are you sure I should be giving her iron? She'll get back to me.
Is this how it works? Is thalassemia all about personal choice in medical practices? No protocols set in place? If I know more about this than her Doc we're in trouble.
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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.
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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! ???
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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.
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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
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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...?
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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.