New here, from KY

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New here, from KY
« on: April 04, 2012, 12:43:53 AM »
Hi. I'm new and in my 30s. I was diagnosed w/ thalassemia maybe about 16 years ago.  All I know is I'm alpha thalassemia, I don't even know if it's minor or major. I need help in this because I've always ignored it, I was always just anemic or sometimes not even anemic but the MCV is always low.  The past few years, I've been dizzy, nauseated and having a lot of other symptoms.  I just had a regular CBC done today and was at 60 for MCV.  I just wonder if there's anything we can do to improve it? Or is the low MCV something I live with for the rest of my life?  I'm headed to see the hemalogist in a couple of weeks and will ask more there but wanted to know what everyone's doing.  Thanks.  Btw I just look so pale and sickly and I wasn't this bad before but the past 2 years I've been. 

Thanks again!

PV

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Offline Andy Battaglia

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Re: New here, from KY
« Reply #1 on: April 04, 2012, 01:21:39 AM »
Hi PV,

Briefly, there are 4 alpha globin genes. In alpha thal, 1,2,3 or 4 genes can be affected. When all 4 are affected, it is alpha major and no normal hemoglobin can be produced, resulting in death of the fetus by birth. When 3 genes are affected it can be HbH disease or a more serious form that sometimes requires transfusions. When 2 genes are affected it is alpha trait and when one is it is silent carrier state. Yours must fall in either 2 or 3 genes affected. Your MCV of 60 would put you in the HbH disease category, but this can't be confirmed by just the one test result. Do you have the results of a complete blood count? Have your iron  levels been tested? If it is HbH, then all children would carry either one or two affected alpha globin genes.

The main treatment for HbH is folic acid. I suggest 2 mg daily. This helps build red blood cells (RBCs). A good B complex may also help. A nutritious diet is important, and fava beans should be avoided, as they can cause hemolysis, death of RBCs. There are also certain drugs and chemicals like moth balls to avoid, as these can also cause hemolysis. You can see some things to avoid in our thread at  http://www.thalassemiapatientsandfriends.com/index.php/topic,3410.msg34830.html#msg34830
I have heard reports about some household products like dryer fabric softener sheets also leading to hemolysis.
Andy

All we are saying is give thals a chance.

Re: New here, from KY
« Reply #2 on: April 04, 2012, 09:29:46 PM »
Thanks for the reply.  I'll ask for my latest CBC, the one done yesterday and I will post it here.  The PCP just told me my MCV and that I'm slightly anemic again.  I do believe I have 2 genes affected. I want to get this all sorted out when I see the hematologist. He acted like it as no big deal and just to take iron pills which do nothing at all for me.

Thanks for the info, I read it and I was surprised that my hematologist didn't tell me about this! Is this common knowledge to them?  I'm mad because I was eating those things, having no idea they were supposed to be avoided. And I was recently on Doxycycline.

Thanks again, I wish I found this site sooner.

PV

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Offline Andy Battaglia

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Re: New here, from KY
« Reply #3 on: April 04, 2012, 11:53:33 PM »
Most doctors have little knowledge about thalassemia in general but even less about alpha thal. If you show sensitivity to certain foods or chemicals, and your Hb drops, you can be certain that favism is an issue. I would suggest paying close attention anytime you suddenly feel very tired and look for anything unusual you may have eaten or been exposed to. Although favism is a well known problem for those with HbH disease, it is not associated with alpha trait. However, I am beginning to believe this is simply due to lack of reports making the connection, as we are hearing from more and more alpha carriers who show signs of favism. Whether or not the connection is accepted, you can see for yourself when you are affected. Think to avoid chemical fumes in general, including many common household and beauty care items. There is a possibility that some chemical fragrances cause favism in sensitive people, so always watch for what you are exposed to. You may be able to recover your normal Hb level by avoidance. If it does happen that you have HbH, as with thal intermedia, the symptoms do seem to worsen with age.

In the end, it is difficult to give an accurate diagnosis for alpha thalassemia in adults unless a DNA analysis is done.
Andy

All we are saying is give thals a chance.

Re: New here, from KY
« Reply #4 on: April 11, 2012, 12:08:09 AM »
Andy,

Thank you for all the information. I had no idea.  I asked the dr. office to send me my CBC but they only sent me the general info where it says abnormal....yeah they don't listen very well.

Another thing that I notice w/ me is that my fingernails sometimes grow with deep ridges on them.  It's not all the time but I think when I'm at worst, the nails grow like that.  Do you happen to know if this is common with thalassemia?

Also I already take a multivitamin but it's not the 2 mg that you suggested for folic acid.  It only has 4mcg. So you think I really need more?  My other concern is the iron pills, my recent test showed I'm mildly anemic so I started taking iron pills again.  I was reading around here and it seems that could be a problem as well?  I have so much to learn.

Thanks again for any info. you could give me.


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Offline Andy Battaglia

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Re: New here, from KY
« Reply #5 on: April 14, 2012, 11:46:30 PM »
I would suggest at least 400 mcg folic acid daily and up to 1000 mcg. It is a basic part of the process that builds red blood cells. Often, pitted fingernails are related to zinc deficiency or thyroid disease. Blood tests can determine if there is a problem.
Andy

All we are saying is give thals a chance.

Re: New here, from KY
« Reply #6 on: April 16, 2012, 05:04:24 AM »
Andy,

Thanks again. My thyroid is normal the last time it was checked which was 2 weeks ago. So it must be the Zinc then. I feel like I'm so malnourished.  I also got confused with folic acid and folate.


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Offline Andy Battaglia

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Re: New here, from KY
« Reply #7 on: April 16, 2012, 02:35:34 PM »
Folic acid and folate are interchangeable.
Andy

All we are saying is give thals a chance.

 

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