A couple of questions.

Hello,

I am new to this forum but not new to Thalassemia. I was diagnosed in 1974 with Thal minor when I was 16. I was told by the hematologist then that I should not take iron ever. So of course, I don't. I do eat some foods that are rich in iron but when i do, my stomach makes me pay the price. So I try to stay away from iron in general. I have read in some posts here that some of you take iron. Is it OK to take iron? I myself prefer to not take it as it does upset my digestive system. My internist also says that I should not take it. I am a little confused about the use of iron in Thalassemia minor patients.
Also my hemoglobin is quite low. It usually is around 8.5 give or take a tenth of a point. Today I was at my Dr.'s office and my results of my CBC have gotten worse. My hemoglobin is 7.4. I have been quite tired lately and my usual routine has been slowed due to fatigue. I do not have any other symptoms except my usual paleness. Do Thal minor patients have hemoglobins this low? I am just curious. I will have a recheck in 3 months and if there is another drop my Dr. suggested a transfusion. I don't want to do that.I really don't know anyone else who has this condition.

Any information is appreciated.

Zoe

Hello Zoe!
That is quite a low haemoglobin for a thal minor!  A couple of quick suggestions:
a)  It IS possible to have iron deficiency AND thal minor. To check for this your doctor would need to specifically test your iron levels, not just your haemoglobin levels. 
b)  Perhaps the low levels may be indicative of thalassaemia intermedia - have a look at the threads under that heading on this site.
I am sure there are others who can provide a lot more detail!  Good luck getting it sorted out.
Sal.

Hello Zoe

Welcome to the site. I am sure that you will get to know more information from it.

Zoe, i am not a doctor but i can tell you my opinion as a patient.

I totally agree with Sally about your case. I  think that you need to be re-diagnoised. For example, i am a thal minor and have iron deficiency so i am taking iron pills. Taking iron depends on whether you need it or not. Being afraid of taking  extra iron is considered right if your HB is low and you are NOT iron deficiet so in this case your body will tend to absorb more iron from the food in the gut and therefore no more iron pills are needed.
I too think that your HB is very low for thal minor unless you have severe iron deficiency. Zoe, what about your spleen??

tell us more about you

Manal

Thanks Sal!

I appreciate your info. I have been looking into the Thal intermedia section. I never even knew that there was such a thing. I only thought there was a major and a minor, i have already learned from this site. :smile

As for my iron levels, I will suggest a test to my dr to see if there is a problemm with my levels.


Zoe

Hi Manal!

I remember when I was younger my hematologist said that my iron was ok and I didn't need anymore, that it wasn't in my body's best interest. But as of now I don't know as I have not had it tested.

In regards to my spleen, I had an Ultrasound of my abdomen back in March of this year and it is larger than normal.

I appreciate your help!!
It is just so nice to actually talk to people that have the same thing I do. sometimes I feel like I'm the only one and no one really understands it. No one in my family has Thalassemia. My parents and brother were tested and they don't have it. As far as carriers though, I do not know.
Thanks!
Zoe

Dear Zoe

Feel free to ask whatever you want at anytime. Please update us with your iron levels.
 
My advice to you is to read as much as you in the intermedia and minor sections, they will provide you with alot f information that will also help you in discussing our case with the hematologist.

Take care 

Manal

Nicely put Manal!
Zoe, where in the US are you located?  It might be useful to track down a haematologist that specialises in thalassaemia, as sometimes it can be difficult to get accurate information otherwise. 
Good luck!
Sally.

After I see my Doc again in March he said he would probably send me to see a hematologist. I don't know if there are any around here where I live(North Carolina), tht specialize in Thalassemia. My doc did say that he was going to contact one of them to ask about information in regards to Thalassemia. I am the only patient I believe with this problem in my area. So I think that a Thalassemia specialist is few and far between.

I will find out more in March.


Zoe

Hi Zoe and welcome,

Firstly, under treatment centers, we have a list of thal treatment centers around the world (and I hope everyone will keep adding theirs if they haven't already  ) and this listing for NC

http://www.thalassemiapatientsandfriends.com/index.php?topic=49.0

   
Thal Care in North Carolina, USA

Laura M. De Castro, MD
Clinical Director Duke Adult
Comprehensive Sickle Cell Cente

DUKE UNVERSITY MEDICAL CENTER
DUMC Box 3939
Durham, NC  27710
(919) 684-6464  Office
(919) 681-6174  Fax

To summarize what some of the others have said, you do need to be tested for actual iron levels and not just a complete blood count. A serum ferritin test will give a better idea of your iron levels than a blood count will. If you are deficient in iron, it is possible to correct it with diet. I do feel that the non heme iron in plant based foods is easier on the stomach than the more concentrated heme iron in meats. We also do have a topic about increasing iron levels even in vegetarians at

http://www.thalassemiapatientsandfriends.com/index.php?topic=230.0

If iron in foods has caused you problems and you need to take iron, try doing it through foods. Iron pills are so hard to tolerate for most people, so diet is often the best way to approach reversing iron deficient anemia.

You mentioned your parents were tested and neither have thal. Thal is inherited and if you are a minor, then one of your parents is also a minor. This shows one of the flaws in using just a blood count to test for thal. If your parent is a silent carrier, then it may not be obvious from a blood count.

I agree that that there is more than minor going on here. If your Hb is usually no higher than 8.5 it is very likely that it is either intermedia or you have some other gene that in combination with beta thal, causes worse problems than minor, or you may be suffering from another type of anemia, such as iron, folic acid, or B12. Has this low Hb been a lifelong condition? An Hb as low as yours is not normal with thal minor alone. If you can get insurance to pay for a DNA test it is the one way to see if there are other gene mutations at work.

We recently started a topic at

http://www.thalassemiapatientsandfriends.com/index.php?topic=562.0

It is titled Hemoglobin Variants: Are You Really A Minor? It will give you some better understanding of some of the possibilities with the thal gene.

I'm happy you're reading through so many topics. You will learn a lot here and before you know it, you'll be teaching your doctors. 

Hi Zoe,   
    Glad to hear from you . I was also very excited when I found this site - it is wonderful to talk to others who have thalassemia, and who are so knowledgeable. I agree with Sally that seeing a hematologist who specializes in thal is important. I went to different ones who had no experience with thal, and they didn't always advise me very well. There is a thal center in Philadelphia, and one in New York. I don't know what your financial situation is, but you can avoid wasting time and money by going to a place where they have more experience.
     I have intermedia, and my hemoglobin was in the 7 to 8 range, never going over 9. Then as I got older, it was dropping below 8, then finally 6.7, or 6.5. I started monthly transfusions at age 51, about 4 years ago. It's good to read the old posts, and ask many questions.
     Good luck with everything and let us know what is happening.   Jean :smile   

Hi Zoe,

I guess you should get your iron and Intermedia factor sorted out. After confirming if your iron levels are normal(or high) and you're not an intermedia then I guess the only thing left to be considered is your age like Jean said.

Age takes it's toll on the body even for the normal people and we are Thals. and thus it has more increased effect due to our low immune system and blood count.

In that case, a healthy lifestyle is recommended. Take plenty of fresh air, nice balanced diet and most importantly enjoy a good time with friends and family and try to stay happy and share your happiness with everyone else.

Take care, Peace!

Andy,

I was first diagnosed as "anemic" when I was about 4 years old. My doctor at the time did not bother to find out why, he just treated it. I was on so many different iron pills it was crazy. I drank so much prune juice that I can't even look at it now.  When I got older and changed doctors I had to get iron shots. Two in my back end twice a week. I still am sore from that fiasco. After that didn't help, they sent me to a hematologist. It was there they said I had Thal minor and that I shouldn't take iron. I know they did all kinds of blood work but I do not know what kind or what the results were. My parents and brother were just tested to see if they had it, not if they were carriers, which obviosly I guess one of them are.

I want to call my doc and ask if he would order an iron test. What is it called? I don't want to sound stupid on the phone
I would like to find out before March.


Hi Jean,
I was wanting to ask you how you feel when you do have a transfusion. The word alone scares me. I don't know what to expect from it. And what would happen if I don't go through with it?


Hi Sajid,
I agree about the age thing. I have noticed as I get older, the more tired I get. But you are right , fresh air, good diet and family and friends are the best medicine. Thanks to all for your coments.

Thanks for all the info. This place is great!

Zoe

Hi Zoe,

Ask for a serum ferritin test. Iron deficiency cannot be determined by a blood count.

One question. All the times you took iron, was it any help in any way?

Hi Zoe,

Ask for a serum ferritin test. Iron deficiency cannot be determined by a blood count.

One question. All the times you took iron, was it any help in any way?

No It never helped.

Zoe

Hi Zoe,
     I feel a lot better after a transfusion. My skin changes from yellow to pink. I usually get 2 units of blood, sometimes 3. It takes about 6 hours for 2 units. I get them in the outpatient room at our hospital. The nurse puts in an IV and the blood goes in from there. It's not bad at all. When I was just getting occassional transfusions, it didn't change my health all that much. It was when I started regular monthly transfusions that my hemoglobin level rose and I started feeling better and getting healthier.  Now my hemo. is kept at a mean of 12 every month, and it drops about a gram a week until I go in again. Just be aware that an occassional tranfusion will boost you up some, but your level will eventually go back to where it was. It is only the high-transfusion regimen that actually changes your health level. At least that is what happened to me.
     Along with the benfits of keeping your hemo. level high, comes the addition of unwanted iron from the blood. The body has no way to get rid of all the excess iron and it gets stored in the body and in organs. So, after several transfusions, the ferritin level goes up and will continue to do so as you get more transfusions. So, at some point you have to start getting the iron out by using a chelating drug and an infusion pump, or they have an oral chelator pill out now. Unfortunately, it costs a lot and some people have had trouble getting their insurance to cover it. 
     For me, it is worth getting transfusions and doing the chelating because I feel so much better with a higher hemoglobin level. Getting the genetic test done is important so you know what you are dealing with. The decision to start regular transfusions usually comes when your hemoglobin keeps getting lower, and your health is getting worse. You have to think of quality of life.
     Good luck. Hope you get to a thal center, and that you get more information and some answers to your questions. Take care, Jean