Not so Silent Alpha Carriers

A year ago, my three children and I were diagnosed with Alpha Thalassemia.  We are supposedly silent carriers with only one deletion.  However, we have symptoms - oh, boy, do we have symptoms!!

Recently, we were finally feeling better after months of dutifully taking our folic acid.  We were helping at a rummage sale at church, and came across a bag of clothes which had been donated.  These clothes had clearly been stored in mothballs.  The smell was obvious.  I immediately got my kids and I away from the clothes and over to the other side of the room, where we worked on something else.

After about an hour, I was feeling so bad, that I decided it was time to go.  Without much explanation to the kids, we left.  Sure enough, our symptoms came back strong starting that night.  We were instantly anemic.  I did not go to the doctor and have blood tests done.  But we all had horrible leg pains at night (RLS), swollen tongues and deep circles under our eyes.  We were exhausted for the next week, and mostly rested.  It has now been 5 weeks since our exposure to moth balls and we are finally feeling a little better.

What I am wondering is - are we the only ones?  Any other "silent" alphas out there who have symptoms? 

Hi paisleyhill and welcome,

Medical sources will tell you that there are no symptoms in alpha thal carriers. Even though it is well known that hemolysis can be set off by certain drugs, chemicals and foods in HbH disease (3 gene affected alpha thal), it is not believed that it happens in carriers. However, since we have heard previous similar reports, I have to say that it does happen. Moth balls, naphthalene are actually the best known chemical cause for sudden hemolysis, the destruction of red blood cells, that you and your family experienced. Another woman reported that fabric softener dryer sheets set it off when her neighbor used them. Avoidance of chemical fumes is recommended. The condition is known as favism because fava beans can set it off. We have a list of some of the things to avoid at http://www.thalassemiapatientsandfriends.com/index.php/topic,3410.msg34830.html#msg34830

The hemolysis is short term and patients recover once the body has had time to produce new RBCs. I suggest folic acid be taken by all carriers, as it aids in building RBCs. It is the only recommended treatment for HbH disease, and I feel that recommendation needs to be made to all alpha carriers.

I had the same thing happen to me, which helped me get my diagnosis of alpha thal. At work, we started using a new cleaning chemical and it made me so sick, and anemic, that I had to have an emergency blood transfusion. When I looked at the chemical's ingredients, it had benzene in it. Now I stick to the certified organic cleaning stuff and don't have any problems so far. The hospital suggested that I be tested for thal, and that is how I got the diagnosis. Otherwise I never would have known.

More and more we are seeing reports of favism among alpha carriers. Favism is named after fava beans, which are to be avoided because they can cause hemolysis in alpha thals, although previously this was thought to occur only in HbH disease, 3 gene deleted alpha thal. Other causes of favism are chemical fumes and many medications. Please refer to the post at http://www.thalassemiapatientsandfriends.com/index.php/topic,3410.0.html

Anecdotal evidence suggest that many chemical fragrances may also bring on bouts of hemolysis. Included in this are fabric softener dryer sheets and artificial perfumes and colognes. If your Hb suddenly drops, review your exposure.

My middle chid's MCV is so low that Dr. Giardina at the Thalassemia Center in NYC did not think it was possible for her to have only one deletion.  However DNA testings showed that it is only the one Alpha deletion. Our mothball exposure was the end of May.  We were under the impression that she was minimally affected.

At the beginning of July, she began to exhibit OCD symptoms.  She washed her hands until they were raw and bleeding.  She obsessed over little things like how much toilet paper she used, or how much toothpaste.  She would cry and pull at her hair over nothing.  It was a total change in personality.

It got a little better, and I thought that maybe it had been a passing thing, but now it is back even worse.  The day before yesterday she was afraid that she might kill herself.  We are going to see a specialist in pediatric anxiety disorders on Friday. 

It occurred to me to Google OCD and anemia.  The Wikipedia article on Iron Deficient Anemia came up and the second symptom listed was anxiety, most often presenting as OCD. 

I believe her whole OCD was brought on by anemia, due originally to the mothball exposure, but subsequently to eating gluten (she also has celiac's). 

Does anyone else have OCD as a result of anemia?

My current plan is to get the OCD document, as well as her suicidal ideations.  I know that her thalassemia has not been life threatening, and so she was not a candidate for a transfusion.  However, now that she is suicidal, that has changed.  With the diagnosis of OCD and suicidal thoughts, I want to go back to the thalassemia center in NYC, and beg for a transfusion as a trial.  Then, if her OCD goes away, we know what we are dealing with.  If not, I would know that I was wrong.

BTW, she is only 9 years old.  I worry that if she is this bad now, how will she be once she gets her menstrual period, and begins losing blood each month?

Thanks for your thoughts!