Hi All

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Offline PenguinLover

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Hi All
« on: January 25, 2007, 05:44:11 AM »
Hi there.  My name is Manda, I'm new here.  I'm a 22 year old college junior majoring in psychology and art.  For ten years I've been treated for iron defiecent anemia.  Two weeks ago I went to the doctor because I was sleeping all the time and was sick.  I just thought I had mono (I live in a dorm) and my iron levels had gotten low enough to make me physically ill.  My doctors ruled out mono right away, and declared me a medical mystery (very reassuring).  After talking to another doctor, they decided to run some tests.  Well, anyway last week one of my doctors called me back and told me they were worried that my iron levels had dropped below normal (my normal).  She told me that it was possible that I may have Thalassemia, but not to worry.  She said that even though it was possible she wanted me to stick with my regular treatments of iron and vitamin c three times a day, come back in a month, and have my blood work retested.  She said if my iron had improved, it's nothing to worry about, just the same old condition I have had for most of my life.  If things hadn't improved however, she said we would have to find another course of treatment, and have me retested for Thalassemia.  I asked her about this condition, and what could be done for it.  I was horrified by what she told me.  She said that if this is what I had, there was not much that could be done, except for closer monitoring of my iron levels.

I don't like vauge answers so I went looking for them.  What I found scared me more than the unknown.  I know I could be over reacting, I could just have very low iron levels (if that is the case, I feel terribly bad for it).  This is very difficult for me, I think the waiting is worse than anything.  All the what if's that run through my mind.  I constantly compare my health issues to that of the signs and symptoms.  I have always been extermley fatigued (another thing I chalked up to anemia), but last year I was diagnosed with SVT (where my heart beats way to fast at about 378 beats a minute), adn I recently discovered that heart diesease is a symptom of Thal.

I feel odd for gushing all of this, especially so pre-maturly.  I just had to speak somewhere, I've spent the last week crying out of self pity (mainly becasue I am so scared).  I have not yet told my paretns, any of my friends, or even my boyfriend.  I've been reluctant to tell my parents, becuase non of the women on my dads side of the family have ever faired well with blood disorders (I've had two aunts, and a cousin die of lukemia, my grandmother had an odd liver disorder that they never figured out, plus so much more.  I guess I'm scared and just looking for a place where someone might understand.

Anyway, this is about all I have to say for now, I'm going to take a look around.   ???

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Offline Andy Battaglia

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Re: Hi All
« Reply #1 on: January 25, 2007, 06:21:58 AM »
Hi Penguin Lover and  :welcome to our group ,

If you do have thalassemia it is most likely thal minor which means you carry the trait but do not have one of the more severe forms (intermedia or major). Please look through the minor section of our site to learn more about minor.

Has the iron therapy worked in the past? And how has it been determined that you are iron deficient? A blood count will indicate the possibility of iron deficiency but it is not the only possibility. Thal minor will give similar results and is often misdiagnosed as iron deficiency anemia. Iron supplements are then mistakenly given and they have little or no effect on the anemia and can in fact cause an iron build up in the body if taken long term. It is absolutely essential that you determine whether or not you do have iron deficiency. Excess iron can cause damage to the organs and basically poisons the body when high levels accumulate in the organs, especially in the liver and heart. Quite often iron therapy is used for one month and if noticeable improvement is not seen, iron deficiency is ruled out. A description of the different techniques for determining thal trait can be found at http://www.thalassemia.com/beta_thal_2.html

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...affected children are frequently identified outside the newborn period, and the evaluation of their microcytic anemia includes differentiation between iron deficiency and beta thalassemia trait. The red blood cell indices can be helpful in this differentiation, as the hemoglobin concentration and the red cell count will generally be lower in iron deficiency. The distinguishing finding in beta thalassemia is a hemoglobin electrophoresis with the finding of elevated Hgb A2 and F. Both will be increased in beta thalassemia trait without iron deficiency, and will be normal or decreased in alpha thalassemia and isolated iron deficiency anemia. There are several formulas to help in office screening, but they are also based on the assumption that the child is not iron deficient. Usually iron deficiency can be ruled out using free erythrocyte protoporphyrin (FEP), transferrin saturation or ferritin as a screening test in children who have a hypochromic microcytic anemia. The least expensive test is a trial of iron and a repeated hemogram after a month.

Please make sure your doctor is familiar with these methods of testing for thal trait. You are in an area of the US where thal is not commonly seen so your doctors may not have much experience with thal. Thal may be a mystery to them because they have never seen it before. This is not a criticism of the doctors as this is common in areas where thal is rare. If your doctors need to consult with doctors more familiar with thal, please ask them to contact the center in Chicago.

Alexis Thompson, MD
http://www.childrensmemorial.org/findadoc/doctor.asp?dID=1009
Sees patients at
    Children's Memorial Hospital
    2300 Children's Plaza (Lincoln and Fullerton)
    Chicago, IL 60614
    1.800.KIDS.DOC

Children’s Memorial Hospital
Chicago, IL
Ph: (773) 880-6381
Fax: (773) 880-3223

I cannot overemphasize the importance of avoiding iron if you are not deficient. Iron deficiency can co-exist with thal trait but it is not common. I would also suggest that you look over our section on supplementation in thal at http://www.thalassemiapatientsandfriends.com/index.php?topic=118.0

A good diet, exercise and proper nutrition can help one manage thal minor. 
Andy

All we are saying is give thals a chance.

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Offline PenguinLover

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Re: Hi All
« Reply #2 on: January 25, 2007, 06:55:50 AM »
Hi Andy.  Thank you for your reply.  I was diagnosed with iron deficent anemia 12 years ago.  The doctors I ahve seen have treated me with iron suppliments.  At first it was just one pill aday, and with no change, they uped it to twice a day, and they kept uping it until now, when I am taking three doses (900mg) 3 times a day, plus a vitamin c suppl. once a day.  With this last series of blood tests, my doctor had my iron rechecked (they do it everytime I have blood drawn).  She said that my iron levels were at an 8.9.  She said this was getting seriously low, but not quite low enough for drastic treatment (ie: transfusion).  My normal level is about a 10 rating, so for me this is quite low.

Thank you for the links, I will definetley take a look at them!

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Offline Andy Battaglia

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Re: Hi All
« Reply #3 on: January 25, 2007, 07:08:10 AM »
If you are being told your iron level is 10, it is not a measurement of iron. That number is most likely your hemoglobin level, which will not tell you if you are iron deficient. The best measure would be a serum ferritin test. What levels are normal can be seen at
https://www.healthatoz.com/healthatoz/Atoz/common/standard/transform.jsp?requestURI=/healthatoz/Atoz/ency/iron_tests.jsp

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Normal results

Iron level test

Normal serum iron values are as follows:

    * Adult males: 75-175 micrograms/dL

    * Adult females: 65-165 micrograms/dL

    * Children: 50-120 micrograms/dL

    * Newborns: 100-250 micrograms/dL.

Ask for a serum ferritin test. Your blood count is not telling the whole story and doctors not familiar with thal may not be familiar with which tests are most important in differentiating between iron deficiency anemia and thal trait.
Andy

All we are saying is give thals a chance.

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Offline PenguinLover

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Re: Hi All
« Reply #4 on: January 25, 2007, 07:40:05 AM »
I didn't know about the specific test.  For as long as I can remember the doctos have given me a number on a 1 - 20 scale, and they have alwasy introduced it as my iron level.  I'm not certain what all the tests were that my doctor ran, though I know for sure she ran a blood smear, plus some others.  I'm calling my doctor in the morning, she has been having me check in with her every day at least.  When I first went to her, I was constantly throwing up (no fever or flu like symptoms), sleeping at least half the day, and had various pains through out my body (especially in my chest, my rids and about my kidneys).

I've done a lot of reading about Thal the past week (far from knowledgeable though), and my head is just spinning.  It is a lot to take in.  Besides asking for a serum ferritin test, is there anything else specific I should ask my doctor about.  Also, I'm not sure if it makes a difference, but I go to school in Lamoni, but my doctor is in Des Moines.  As far as I know my parents nor anyone in my family have been tested/treated/diagnosed with Thal.

Any more advice or help you can give me, would be muched appreciated.

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Offline Danielle

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Re: Hi All
« Reply #5 on: January 25, 2007, 10:55:35 PM »
Hi, PenguinLover!  Welcome to the group!  :hugfriend

As Andy had said, even if you did have Thalassemia, it would most-likely be the minor form of it, which can cause mild anemia and fatigue, and also other symptoms in some cases.  You wouldn't need blood transfusions or any of the actual treatments that Thal Intermedia or Majors do. The only cases where I have hear minors getting blood was when they were pregnant or ill, and even then it's rare.  Also, your iron level would not be low if you had Intermedia or Major.

As for the SVTs, I was diagnosed with that also, and had two cardiac ablations for it.  I didn't want to go on medication, so I opted for the procedure.  It worked like a charm the first time, but the STVs came back 5 years later and I needed another one (the doc said the he left some tissue behind the last time, but got it all this time), which I just had back in October '06.  Are you on any meds for it?  That's a very uncomfortable arrhythmia.  Hopefully you are getting treatment for it, especially with your heart rate going to 378. How do you even breathe when your heart is going that fast?  My beats were going to 250 and I was practically on the floor.   :sadyup

I hope your doctor figures out what is going on, so you can relax.  Take a look around the forum and I'm sure you will get all the answers you need about Thalassemia.  The Thalassemia Minor forum may give you some answers.

I hope you get all the answers you need soon.  We are here if you have any questions or need to vent.  :happyyes

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Offline C3nZ0

  • I'm thal Int, but minor trait
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Re: Hi All
« Reply #6 on: February 03, 2007, 11:31:35 AM »
Hi Manda  :hugfriend,
 I'm a italian boy... as Andy has said to you, the iron terapy in a Thal minor is bad: I have my hb level (hemoglobine) like 12 and I don't have a iron terapy; but my liver (and I hope only its) have to much iron...

It's very important to understand what caused this.. if is thal the iron is dangerous..

C.Enzo

 

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