Hi everyone

Hi, my name is Wendey.  I'm 38 yrs old and a mother of two.  I'm not positive about my diagnosis, so I joined this board to get more information and insight from those who know what this disease entails.

About 12 years ago, my doctor ran some basic bloodwork.  It showed me as anemic, so she sent it for "further testing".  When the results came back, she told me that I had thalessemia.  She explained it as a type of inherited anemia and said it was nothing to worry about......so I didn't.

Well, for the past year or so, I've been extraordinarily tired.  I have no stamina and start to sweat with the tiniest exertion.  I've also been getting "hot flashes" since I was in my mid-20's.  In August, my doctor ordered some routine bloodwork that came back as anemic.  He put me on iron and folic acid supplements.  I couldn't tolerate the iron, as it gave me severe abdominal cramping, but I continued to take the folic acid. 

For some reason, I suddenly remembered my prior diagnosis of thalessemia a couple of weeks ago.  I called up my doctor and he ordered the electropherisis (sp?) test and referred me to a hematologist.

I saw the new dr yesterday.  He told me that my iron levels are so low that the electro. test was not accurate.  He prescribed 975mg of iron a day, in addition to the folic acid, advising me that if I wasn't able to tolerate the oral iron, I would have to get weekly iron transfusions until my iron levels went up.

I'm going to call my family doctor on Monday and request copies of all my bloodwork results.  The only number I know right now is that my hemoglobin is 8.

BTW, my family tree is all Dutch, for at least 3 generations.  No one is my family is aware of having thalessemia.  Two of my nieces were recently tested for mono (came back negative) and told that they have enlarged speens.  I've advised my sister to mention thalessemia to their family doctor so he can test my nieces.

So, that's my story.  I've been reading this board for about a week now and want to thank you all for posting such wonderful information.

Hi Wendey,

Welcome aboard


Reading your post, i think you could have thalassemia minor,just like me,though i am not a doctor, so your hb electrophoresis will tell the exact story,but i think hb of 8 is quite low,is your doctor sure about your iron level?he did any test of "ferritin level"?i think we minors should be care ful with iron intake through medicines,,folic acid is good though.

TAKE CARE.

ZAINI.

Hi Wendey and welcome,

It is unusual but not unheard of that someone with a northern European background can have the thal gene, but it might be advisable to have some further testing done to confirm that is is indeed thal.  Iron is often mistakenly given to people with thal-caused anemia and usually it doesn't help, and can cause harm if taken over long periods of time. A blood serum ferritin test will give a much better idea of your iron levels. Doctors often decide to prescribe iron based on hemoglobin tests that show anemia but if the anemia does not respond within one month it should be assumed that it is not iron deficiency anemia. The electrophoresis also will not show if it is iron deficiency. Folic acid is an absolute necessity and a dose of at least 1000mcg (1 mg) should be taken daily. Ask the hematologist to run a serum ferritin test before you start on an iron supplementation program. Many doctors are not familiar with thal and will often prescribe the wrong treatment. If you are not comfortable with your diagnosis and feel that you need to see another doctor, contact Strong hospital in Rochester. They deal with thalassemia a bit more than any other doctors in your area. It is where Lisa, the founder of this group took her treatment.

Enlarged spleen is also sometimes found in minors so you are correct in advising that your nieces be tested for thal.

Hi Zaini and Andy.  Thanks for the warm welcome  :smile

It's from reading this forum that I realized that I need to have a copy of my bloodwork in my hands so that I can see exactly what tests have been run.  The hematologist took two vials of blood in his office, but he didn't say what they were for.  I'm hoping he ran a serum ferritin test, but I'll call and find out for sure.

I've moved several times since my original diagnosis, so my medical records are rather scattered.  He was able to find bloodwork results from 2003 that showed tiny red blood cells and some anemia at that time.  As far as I know, I've always been at least slightly anemic.

For right now, I'm taking the iron supplement, as he told me that my iron levels were extremely low.  It's my understanding, from what he told me, that if my iron levels don't go up after I've been taking the iron for 3-4 weeks, that it might be an indicator of "something else".  He said that my previous instructions for iron were for much too little, so he wasn't surprised that my iron level hadn't gone up since August. 

I really hate how vague doctors can be and how they assume that you won't understand their terminology.  He didn't say why the low iron made the electropherisis results innacurate.

Are you familiar with Interlakes Oncology and Hematology?  They have offices all over, including in Rochester---that's where I'm being seen.

Hi Wendy

Welcome to the site, i am sure you will get to know many things here.


 When iron levels are low, the percentage of HB A2 in the electophoresis test is not accurate. The percentage of HB A2 shows whether you are a carrier or not. If the percentage above 3.4 %, this means you are a carrier, while lower than this you are normal and don't carry the trait.

Hope this helps

Manal

Hi Wendey! Welcome to the site! 

Hi, Wendey!  Welcome to the site!     You will feel right at home, here.  We have a wonderful bunch. 

I'm sorry that you are getting the run-around with your diagnosis.  It really bothers me when doctors see that a patient is anemic, and automatically starts dishing out iron to *fix* the problem, when it will only create more issues if the diagnosis turns out to be Thalassemia.  You would think that since Thalassemia is becoming more popular, that doctors would know to research the cause of a patient's anemia a little more, before giving meds that could possibly cause harm instead of good.   

I truly hope that you can get some accurate information, soon.  Your hemoglobin is quite low, so if you indeed have Thalassemia, you may be borderlining on Intermedia.  Please let us know what the outcome is.  In the meantime, we are always here to help in any way we can.  Don't hesitate to ask questions or vent your frustrations. 

Hi again. 

I went to my family doctor yesterday to get something for a sinus infection and I asked him if he had run the serum ferritin test.  He told me that he had and that it showed my iron was very low.  He asked about my appointment with the hematologist, as he really wants to know the cause of my anemia.  I have to say that he really is a great doctor, he's very open-minded and goes out of his way to research anything that he does not understand.

I'm having a hard time with the iron supplements.  They give me nasty stomach pains and make me very nauseous.  I'm going to try to take them for a few more days, but if it continues, I will call the specialist back and ask for the iron transfusions.  My family doctor told me that the iron transfusions would make me feel better a lot sooner.  He's very concerned about me because, as he said "you are a large person walking around with only half of the oxygen that a normal-sized person needs to function".

Iron transfusions?

I've heard about blood transfusion, but never iron transfusions? Is it the same thing?

Maybe he ment Iron Shots (Injections)?

Nope, not a shot.  He said the iron would be given via IV and would take an hour to an hour and a half, once a week.

Welcome to the site, Wendey. I have thal intermedia, and also started having hot flashes very ealry. Do you also get sinus infections a lot, I do. I wonder if you have thal intermedia because of you low hemoglobin and fatigue. They also tried to give me iron pills in college and I got really sick from them. You could ask for DNA testing for thal (beta and alpha genes), and you would know for sure. Good luck on getting a diagnosis and treatment that will help you. Jean

Hi Wendey!  I'm sorry that you are having trouble tolerating the pills.  If you do decide to go for the iron transfusions, I hope it makes you feel a lot better and that everything goes well.  Also, if you get them, make sure you keep an eye out for any type of reaction (as with any type of transfusion), because some people cannot tolerate intravenous iron.   

Sajid, you can get iron intravenously, like a blood transfusion. 

Thanks for the info guys,

Didn't know that such a procedure existed as people here tend more to stay away from hospitals if an oral or less complicated solution exists.

Take care, Peace!

Hi Wendey,

I am sorry you are having hard time with iron pills,but have you tried taking them with meals?it made a difference for me.

Yes Sajid, you can take iron intraveinously, they gave it to me when zainab was born and my hb went as low as 7,ofcourse i didn't know anything about having thal minor at that time, neither my doctor,sometimes i wonder if my ferritin can be high due to those iron transfusions,i'll get it checked sometime.

ZAINI.

Hi again.  Sorry I haven't checked back for a few days.  I have a son with special needs and sometimes he needs me more than others.

I wanted to respond and update a bit.  I have started to take the iron with food.  It doesn't upset my stomach much this way, so I'm getting in all of my iron each day.  I go to see the hematologist again this Friday and I will discuss the iron situation more with him then.

My two nieces with the enlarged spleens had both been tested for thalassemia, but the doctor hadn't told my sister this, not wanted to alarm her unnecessarily.  Both of them were negative for thal.  It appears that they had mono sometime in the recent past, but didn't have enough symptoms to really concern my sister until they started to complain of pain (from their spleens).

JZD---YES!  I suffer from severe sinus infections almost constantly.  I also have tmj, which is greatly aggravated by my sinus infections.  I have almost constant pain in my jaw because of this.  I'm currently taking an antibiotic for a sinus infection.  That's a very odd coincidence.