New member from Tucson, Arizona

Hi everyone!  I am a 39 year old female who was diagnosed with Beta-Thalassemia in 1982.  Over the years, I have been given almost no information from the medical community about this disorder.  Almost everything I've learned about it has come from members of my family who suffer with it.  I know the disorder is genetic and that it comes from my father's side of the family, where in many cases it has been severe and life-threatening.

Five years ago I became very ill.  I was experiencing chest pains, and a host of other symptoms.  I went to the emergency room countless times feeling sure I was having a heart attack.  After many tests, referrals and follow ups, I was no closer to an answer about why I was so sick.  A Nurse Practitioner finally decided to look at the blood work done by the emergency room the first time I went in and discovered I was dangerously anemic.  I have been seeing a hematologist who has been prescribing large amounts of iron supplements and now wants me to take IV iron.  Since being on the iron supplements, I have started having pain in both upper quadrants of my abdomen.  I'm not sure this doctor knows what she is doing and I am very concerned about iron overload.  I came to this site to educate myself and to try to find other thalassemia patients in Arizona.  I am hoping someone might know where I can find a doctor who knows something about this disease and can help me.

Dear Melsgal,

Welcome to the site.  You are right to be concerned.  I assume you have thalassemia minor.  Unless you are in face iron deficient along with having thalassemia you should not be on iron supplements at all and the IV iron is dangerous for you.  Thalassemia blood cells are slightly abnormal and smaller, they have a shorter life and break down faster.  This can cause you to be slightly anemic and is associated with symptoms such as fatigue, breathlessness or 'feeling unwell'.  Some thal minors have little or no symptoms at all. 

In thal minors, sometimes frequent breakdown of red blood cells can cause accumulation of iron in the organs resulting in elevated iron in organs - however serum ferritin may appear to be low in blood tests - this is not representative of the actual iron levels in the body.  Further iron supplementation can lead to iron overload which may be the cause of your pain.  Iron overload is dangerous and you should definetly seek the opinion of another hematologist who knows about thalassemia very well. 

Vitamin supplements such as vitamin D as well as wheatgrass can help you feel better if you are anemic.  Iron is most likely only going to be harmful. 


All the best,

Sharmin

Sharmin,

Thank you so much for your reply.  I appreciate more than you know that someone out there has finally given me a little information about this disease.  I will try the wheatgrass and vitamin D supplements.

I really need some assistance in finding a medical professional in or around Tucson, Arizona who can help me and my family manage this disorder.  My father, brother and nephew have also been diagnosed with Thalassemia and live in this area.  We all suffer from various symptoms like shortness of breath, fatigue, pallor and severe bone and joint pain.  We have episodes of very low hemaglobin levels, especially following periods of stress, infection or illness.  When our hemaglobin is very low we have a whole host of other more serious and more frightening symptoms.  We easily become ill eventhough we maintain a healthy diet.  We become ill so easily that it seems one or more of us is sick daily.

Thank you again for your reply.  I will not be seeing my current hematologist again.  When I began seeing her she told me that it was not true that Thalassemia patients should avoid iron.  She insisted that I take it.  I stupidly assumed that because her primary field of study was "the blood" that she would know what she was doing.  Is Thalassemia so rare in the United States that it is not studied?

Thalassemia major is not common in the US, but minor is more common than most doctors realize. In many parts of the US, doctors will rarely if ever see thal minors and may not always recognize it when they do. It is not completely the fault of doctors that they have little knowledge about thalassemia. Most do not encounter thal majors and minors may be dismissed as anemic and given iron, even when thal minor is suspected or even diagnosed. But, lack of experience or teaching in medical school are not really good enough answers when you are the patient. And you will also realize that almost every medical site online will quickly dismiss thalassemia minor as having no or only a few mild symptoms. Until you arrive at a forum like this, where hundreds of minors have talked about their very real symptoms, you will find very little information that recognizes that many thal minors do have symptoms, and that these symptoms are very similar in the reports we read here. One result of this is that you are almost assured that you will not find a doctor that gives thal minor any importance regarding your health. After years of advising minors, I have come to the conclusion that if they want help, they need to help themselves. Read as much as you can here regarding minor and what people do to help improve the way they feel. Good nutrition, avoidance of foods with no or little nutritional value, supplements like B complex, vitamins C, D and natural E, and finding ways to get at least some mild exercise, can all help. No one should tell you that you can feel normal, but you can improve the quality of your life by understanding that thal minor does put some stress on the body, and this stress depletes nutrients and they need to be replaced. In addition, many minors live in a state of low oxygen, hypoxia, and this does lead to problems that become chronic over the years. There is also damage done to the body by the substandard red blood cells that are produced by the defective beta globin gene that is affected by thalassemia. One beta gene can create normal beta globin but the other will have some defect in the creation of beta globin and much of this is useless, causing small irregularly shaped red blood cells that lead to hydroxyl radicals and oxidation and even cause something of a "clutter" in the bloodstream. A diet and supplements high in antioxidants are a key strategy to counter this oxidation in thal minor through major. I am recommending that all minors get a vitamin D test and learn their level. D deficiency is widespread and affects anywhere from half to 2/3 of the world's population.

Don't expect a lot from doctors. They can have the tests done but you will have to take measures on your own if you want to make life a little better.

If you go to the following link, you will find a post with an attachment. This is the only study that has been done about thal minor. It concluded that there are symptoms in many minors, but also concluded that much more study is needed. If you want to talk to your doctor, you may want to print this study out and show it to your doctor. Emphasize that there is a lack of knowledge about thal minor and you want to feel that your doctor can keep an open mind about it. If your doctor cannot accept that minor may be a factor in the symptoms exhibited by your family, then it is time to look for another doctor.
http://www.thalassemiapatientsandfriends.com/index.php?topic=2769.msg26797#msg26797

Hello Melsgal,

Welcome to the forum. Since joining the site I've learn way more about my Thal than from any Dr. since I was diagnosed as a kid. My sister and I were both diagnosed at around 7 or 8yrs old. Both my parents have the trait. She's a minor and I'm an Intermedia. We were both given iron and I had to have blood transfusions, but I stopped taking iron to avoid chelation at 13 or 14yrs old. By then my face had already started to deform because of the overload. I am now 34yrs old and probably in better health than I've ever been. I go to the gym 5 days a week and drink green tea 3 times a day along with taking a multi-vitamin(without iron) and folic acid. The only thing that really bothers me is the heat. It literally sucks the life out of me. blahhhhh:( and with you living in AZ i know it has to leave you drained and the Exjade(Iron removal drug) makes me extremly fatigued sometimes.

I'm glad you found the site and I hope it helps you the same way. Feel free to ask any questions. There hasn't been any I've seen that Andy has failed to give a satifactory and speedy answer to.

Bobby

Take care of yourself.

Thank you all so much for your support and the information you provided.  I started taking Calcium with Vitamin D.  Hopefully the calcium is alright.  It was the only Vitamin D I could find at the local store.  I couldn't find the wheatgrass but I will check a Vitamin store as soon as I am able.

I found another post elsewhere on the forum where Andy suggested contacting Patient Services at the Cooley's Anemia Foundation to try to get assistance with finding a medical professional nearby.  I wrote to them and am awaiting a reply.

I read on another site that dark molasses would help raise HB count.  Does anyone know if this is true?  It would be a miracle if it could be that easy!  As much as I hate the smell and taste of the stuff I would drink it by the gallon if it would help.  If anyone has any information about if dark molasses works and how much it takes to raise HB I would sure appreciate it.

Dark molasses is high in B vitamins and iron, so it does help with anemia, but more because of the iron. I doubt its usefulness for thal minor.

There are many good mail order vitamin companies. You can find almost anything you're looking for, and often at good prices.

Let us know if CAF offers you any help. they have had a policy based on "thal minor doesn't have any symptoms" in the past, and I would like to know if they have changed this attitude yet. I feel that because of their limited resources, that they don't want to open the door to advising thal minors because of the sheer numbers. And it is understandable. Majors have such serious, life-threatening issues, that the problems of thal minor cannot be given the same priority. But if they do refer you, I would like to know.

Andy,

Unfortunately you are right.  CAF still does not recognize minors as having symptoms.  This is the reply I recieved from Ms. Scott:

"How old are you?  how old is your nephew? We do not have any hematologist in Tucson on our MD list and all of the MD’s we have in Arizona are pediatric.  Here are the names of some that I found on a hematology website that I use when needed.  It sounds like you have been getting the run around – I am sure you are very frustrated.  I have never heard of a hematologist that will not discuss a blood count with his/her patient!  That is insane.  You definitely need to get to the bottom of this.  Please keep me updated and I hope one of these doctors will work out for you.  Thalassemia minor is not the cause of your health issues, but you do need to find out what is."

I am BEYOND frustrated at this point.  I don't think I will seek another hematologist since none of them in this area seem to know anything about Thal anyway.  I have made an appointment to see a doctor at our local clinic.  I am going to ask him to run the iron panel tests and I am going to take all the information I have found, including the study about Thal Minor and symptoms with me.  Maybe I can get him to look into the possibility that at least SOME of the things I am experiencing are related to Thalassemia.

I truly don't understand why the medical profession believes there are no symptoms with this.  Anyone who is anemic, for whatever reason, would have symptoms.  Hundreds of people with Thal Minor saying they have the same symptoms SHOULD have made someone take notice by now.

Melsgal,

That's terrible, but don't give up. Once a Dr. at the local clinic told me he did a paper on Thalassemia in medical school, then he asked me how I wanted to be treated, because he hasn't heard of it since. For the most part I prescibed myself antibiotics and cough syrup. I fortunately found a hematologist that is more familiar.

My sister is a Thal minor and like other Thal minors on the board the symtoms a definitely real. She wasn't as bad as I was but there were times when she was drained of all energy in the middle of the day, only feeling better after sleeping most of the day. Right now she is 25 weeks pregnant with twins. The good part is she works in a lab so she's able to keep track of her own iron and hb really well. Keep looking and I'm sure you'll find a doctor that will take you more serious.

Good Luck!

Hello Melsgal and welcome,

This is doctor's general attitude towards thal minor,but i was expecting a bit more from CAF,knowledge has advanced leaps and bounces and i don't know why doctors are having hard time accepting the fact that thal minors do have symptoms,i am a thal minor myself and i can imagine what you must be going through,its so frustrating when doctors don't take you seriously and often the look on their face says "its all in your head "

I hope you'll find someone more sensible,

Good luck,

Zaini.

Well, I had my appointment and it didn't go well at all.  The doctor did notice that my spleen seems to be enlarged so he is running a liver function test but he refused to even discuss Thalassemia with me.  I told the doctor that if my symptoms are not related to a supposedly asymptomatic Thalassemia-Minor then I want to know what the heck is causing them.  He actually told me, "It's all in your head." In addition to suggesting that I continue to take iron, he tried to prescribe me Lorazipan for some sort of anxiety induced mania and suggested I see a mental health professional.
 
I insisted that he run the iron panel tests and then I filed a complaint with the clinic.

 

Wow, He was not only uninformed, he was just rude. I have never encountered that sort of attitude here in the south.

Melsgal,

Spleen enlargement is common in thalassemia and is even found in thal minor. A former employee of mine was a thal minor and at age 5, the doctors considered removing his spleen because it was so enlarged. It is a direct result of the early breakdown of red blood cells, hemolysis, and this occurs because the spleen will filter out the small irregularly shaped red blood cells found in thal minor. Whether or not an individual doctor understands this, it is important that you have as much knowledge of what goes on in your body, as possible.

I have heard the "all in your head" comment from other minors countless times. But unlike your doctor, I have had the opportunity to watch people join this site and with no prior knowledge of anything on this site, post the same exact description of symptoms over and over. It is NOT all in their heads, unless some universal consciousness is planting the same exact ideas in the heads of countless people, and I doubt any doctor would accept this explanation either. No one is making things up and the symptoms of thal minor are easy enough to understand logically. Once one understands that one of the beta globin genes does not function properly, it is simple to see why thal minors would have problems. The problems are seen more in lower Hb minors, but not exclusively, because it is more than a lack of hemoglobin that causes problems for thals. This is well understood in intermedia and major but almost completely ignored in minor.

You may want to refer to a Patient Bill of Rights, as seen in our post at http://www.thalassemiapatientsandfriends.com/index.php?topic=2117.msg18078#msg18078 

No thal minor should be taking iron unless iron deficiency has been proven. This cannot be done by hematocrit alone, and a full iron panel is needed. If a doctor refuses an iron panel, change doctors.

Thank you for your support, Bobby and Andy!

I have been feeling so depressed since I got home from the clinic yesterday.  I really shouldn't have been upset by it I suppose, since it's not the first time it's happened to me, but each time you hear it you doubt your sanity more and more.  I can't make the doctors understand that I KNOW I have anxiety...I get anxious when I get light-headed and dizzy, etc.  The anxiety I feel is caused from my symptoms not the other way around...and I DO NOT want any of thier medication for it because it makes the symptoms worse.

I finally got my July blood test results in the mail from the hematologist's office and I am even more confused now than I was before.  The hematologist told me on the phone when she called to set up the IV iron procedure that I was still severely anemic and not absorbing iron.  It seems to me that my numbers must be MUCH better than they were when I began seeing her because they don't appear to be critical to me.  I don't know how to read these results but I can tell the only numbers on here that are not in the normal range are my hemoglobin 10.7, hematocrit 32.9, MCV 69 and MCH 22.5.  My Reticulocyte count is high 2.6 but all the numbers in the iron studies portion of the test are within the normal ranges; Iron 119, TIBC 300, % Saturation 40, Ferritin 46...yet the doctor says I am not absorbing iron and need IV iron?  The Ferritin is a little on the low side but within the normal range.

I know you can have Thalassemia and still be iron deficient but I really don't see that in my numbers.  Anyone out there have any input?

Your hemoglobin and hematocrit are both lower than normal and typical for thal minor, as are your MCV and MCH. The retic count is on the high end of normal and also typical. Your iron readings are all in the normal range. There is nothing that suggests you have iron deficiency.

My opinion is this. A hematologist isn't going to help you. In fact, your primary care doctor is probably a better choice. There is no cure for thal minor and the best you can do is do your best to be a healthier person. Your primary care doctor can always have the necessary tests done so that you can monitor your ongoing condition. I think you will do better in a context where thal minor is something the doctor needs to be aware of in terms of your low Hb and it not being related to iron, but you won't get far if you try to assign all of your health issues to being related to thal minor, regardless of how many are related. There is nothing a doctor can do for you to correct your genes and create more beta globin, so presenting it to the doctor in terms of thal minor is not necessary. Putting it in terms like having your vitamin D and B-12 levels checked to make sure you are on the right path will get a much more positive reaction from a good primary care doctor. Thal minors often have to give up talking about thal to doctors for the most part, so talk to your doctor about what you can do in terms of diet and nutrition to help optimize the low Hb level caused by thal minor. You can't expect any miracles, but sticking to a good diet and nutritional program can help, and most doctors will cooperate when they see patients working to make their health better.

My suggestions for thal minors, is to choose a good diet, don't skimp on fresh fruits and vegetables, and supplement with the nutrients that help build and protect red blood cells and a good circulatory system. B Complex, vitamins C, D and E. Calcium with magnesium. L-carntine, L-arginine, or L-citrulline. Learning deep breathing can also help move oxygen to the extremities, as will mild to moderate exercise. The fact is that minors have to help themselves because there is little that can be done medically. Optimizing what you do have can relieve many problems. Knowing you are moving in a better direction can also relieve much stress and anxiety.