Have been told I have Thalassemia minor and so confused.

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Have been told I have Thalassemia minor and so confused.
« on: March 03, 2012, 11:14:41 PM »
  About 14 years ago I was told I had Thalassemia minor. One doctor would tell me to take iron and one told me it wouldn't do any good so I haven't really taken it. But for the last few months or so I have been really tired and NO energy and I keep a headache almost everyday. I had some blood work done in January and the doctor was worried that my hemoglobin being a 9.3 or 9.5. and said when it gets that low they would like to do a blood transfusion and sent me to a hematologist just waiting on the blood work from him. As any normal person I am so scared and really don't want to go there. I have also been told on top of the Thalassemia I am anemic with iron. I am so confused and so many questions.
  I thought Thalassemia and low iron was the same? Could Thalassemia and or low iron be some of the cause of my headaches? Would having a hemoglobin that low require a transfusion? Since I haven't been to a hematologist before last week and left almost as confused as when I walked in is there anything I should ask? Also can minor turn into major? Also any other help would get greatly appreciated. Thank you in advance.   

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Offline Andy Battaglia

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Re: Have been told I have Thalassemia minor and so confused.
« Reply #1 on: March 04, 2012, 01:43:51 AM »
Hi Stacey,

Thalassemia minor and iron deficiency are in no way related, but both can cause anemia. Thal minors should be careful about taking iron supplements, because they are often prescribed in error. However, if a panel of iron tests has showed you to be iron deficient, this will need correcting. Thal minor and iron deficiency can co-exist but the causes are not related. Thal minor means you carry the thalassemia gene. This is important knowledge because when two thal minors have children, there is a 25% chance of having a thal major child who would be transfusion dependent lifelong. This information must be shared with any family members who may also be affected, including any children, so they can be aware and make informed decisions about future mates to make sure that both are not carriers. There is little you can do to raise the Hb level of a thal minor, but iron will help if you are also iron deficient. As long as the doctor has checked your ferritin level, serum iron level  and iron saturation, and found you deficient, then it safe to address the problem. This can be done with diet, but for most people, supplements will raise it more quickly. You are nowhere close to the Hb level where a transfusion would be recommended. The rule on this is transfusions are needed when there have been two consecutive tests showing Hb to be below 7. By the way, many minor do have Hb levels in the same range as you and also exhibit similar symptoms. I would suggest that you also get your vitamin D level tested, as deficiency is very common and tiredness is a symptom of vitamin D deficiency. I can vouch for the fact that raising D levels to normal helps with both fatigue and depression.
And yes, low Hb can cause headaches.
Andy

All we are saying is give thals a chance.

Re: Have been told I have Thalassemia minor and so confused.
« Reply #2 on: March 04, 2012, 04:22:06 AM »
Thank you Mr.Andy for the response. I did know that I could pass it on to my children and I do believe my oldest has it but wont know for sure until this summer when I have her tested. She has already been on iron drops but her dad wont get her tested. That is great news about the blood transfusion and it does help relieve some of the worries. I do need to get a full vitamin count as I don't eat much,only once a day. Again thank you very much for the response. 

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Offline Prets

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Re: Have been told I have Thalassemia minor and so confused.
« Reply #3 on: March 04, 2012, 03:55:22 PM »
My hemoglobin is 9, and I get daily headaches too, it took me many years to realize that I may not be iron deficient. Unwanted iron can cause problems too, so its best to get proper advice on that.
Symptomatic Beta Thal Minor.

Re: Have been told I have Thalassemia minor and so confused.
« Reply #4 on: March 14, 2012, 04:47:44 AM »
hi I am a new member, when my daughter was born I was told she was mildly anemic.  My doctor said to give liquid iron drops. My daughter hated them (who wouldn't) so when she turned a year old I started her on Flintstones vitamins, and after a month, this caused her iron level to rise within normal range, but still on the low side.  She doesn't show other symptoms, and my pediatrician said she thought my daughter could have thalassemia trait but would need further testing. we decided to wait because we were not aware of thalassemia running in the family, even though my husband is Thai. In the 70's I guess they didn't check for anemia unless babies showed signs. I'm caucasian, only Western European descent on my side. 
then my son was born, again born anemic.  at 15 months he got another upper resp. infection, and my pediatrician diagnosed him with asthma. my husband was diagnosed at 5 with asthma, and has it more severely than my son.  at 6 months old my son was hospitalized with a high fever, 105. they found no bacteria present and it took 8 doses of tylenol and advil to drop it a degree, 3 days to break it.
since then he gets high fevers, around 103-104 about once every 6-8 weeks. his body doesn't seem to regulate temp. well.  if he plays outside in summer, he gets fatigued and wakes up with 102 fever or higher.  if he swims, no fever results. it doesn't have to be very hot outside really, he just has to play hard, and he's down for the count for 2-3 days afterwards.
he gets illnesses easily, and always gets fevers with them that are difficult to control.  in november I had him tested and my pediatrician said he has thalassemia trait for sure, and they were pretty sure it was alpha. 
my daughter has no symptoms except the anemia, but can get tired and cranky if she doesn't take her daily vitamin for awhile.
I am very worried about my son's health because of the frequent fevers.  I have an appt. with a new asthma doctor at the childrens hospital because I worry that he is getting too much steroid treatment, but it helps with the fevers and his asthma.  I think I'll make an appt. with a hematologist because I read that thals don't need additional iron.  but I also read that thals can also be iron deficient.

does anyone else get frequent fevers with thal.?  I found out recently from my mother in law that my husband had high fevers as a kid, and had severe asthma attacks.  he was treated for asthma and has some severe allergies, but never knew about the thal. he doesn't get fevers as an adult, but does get bad headaches and major fatigue after playing a round of golf. 

I am just wondering about the fevers, is this common?  thank you and sorry for the lengthy post!

 

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