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55463 Posts in 5940 Topics by 6277 Members
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A message for all  parents who are thals. Keeping your iron load under control is an absolute obligation to your children.
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chuck
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« on: April 16, 2006, 04:15:11 AM »

Hi, I am chuck, I am 35, always knew I was thalasemia minor, over the years I never drew any conclusions about my health problems as I was always a tough guy,,, and did hard work, as a boy I got winded running, and in my teens noticed at the beach in the sun I would get dizzy, I once fainted while drinking, but still nothing that lasted,I always bounced back, until a month ago i fell ,,, hurt my rib/back area, i didnt go to the doctor right away, it got better over the next couple weeks, but then I had a lightheaded sensation while driving , and my vision got blurry, I had a needle sensation in my leg, like when it might fall assleep but more painfull, so I went to the Emergency room, they though I was diabetic, which blood tests ruled out, they discovered one eye was off more then the other ,,, and i had swelling in the ear nearest,,,so they did a ct scan, w/ dye,,, to my relief no tumor or stroke was found. did EKG tests, and blood work ,,, found nothing. I later followed up with a doctor that was filling in for my doctor,,, this is where I need help,,, he right away dismissed me as having alergies , and wrote me a prescription for zertek,,, perhaps the diziness was from my swelled sinuses,,,, meanwhile I had developed more symptoms,,, I had cracks,,,in the corner of my mouth,like they were split, and my energy was very low halfway through a day. (he sugested chapstick),,,I almost blew my top,,, chapstick,,,I then explained I had worked outside all winter in a different job then the one i had now and never had in my whole life have splits in the corner of my mouth... I felt insulted,,,, I have always had enough energy to work a long day at least, and I knew something was off. I tried the zertek,,, but it didnt help , it actually made my nose bleed, so I looked up my symptoms , and discovered they are either chapped lips, candidiasis, ( thrush), vitamin b12, or folic acid deficiency. so I took it upon myself to take some b12, and folic acid, I always knew not to take iron , as I mildly looked up thalasemia before, and remebered it was bad.
During my searches thalassemia came up alot in the b vitamin deficiency articles, as well as anemia in general.
When ever I saw  doctors in the past I always mentioned thalessemia, because in my teens they did a quick blood test and ran back in asking my mom,,,, when she told them they looked relieved , but still like they didn't know what it meant. my mom is also thalasemia minor,as is my sister.
They did find I have high cholesterol, which I am not surprised, but I know I can get that down, I guess my next step is to see a blood specialist doctor, someone that knows what to look for, and will actually look deeper.
After the last trip to the doctor I dont have alot of faith in them, they are all about getting you in and out fast. they did x-rays on my chest, no broken ribs,,, but I wonder if i could have damaged my spleen ,,or something and it could make me feel this way.
I am taking a b12, b6, and folic acid , E, C
What kind of blood tests should I have done? would they rule out spleen damage?
chuck
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« Reply #1 on: April 16, 2006, 05:12:13 AM »

Well Chick, it's never wise to self medicate. Go to the closest Thal. Center. Once you are there just tell them your history with Thal. and the recent events that the other doctors failed to diagnose. Hopfully they will check all that relates to Thal. e.g your tiring/fainting epidoses and your pain around the spleen area e.t.c
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« Reply #2 on: April 16, 2006, 10:04:40 PM »

Hi Chuck,

Yes, you should see a hematologist and find out why the sudden change in endurance for you. Many of the things you mentioned could be thal related. The cracked corners of your lips may be the yeast you talked about. And below is a good example of that particular effect.


A deficiency of vitamin B2, Riboflavin can also be at fault. I would suggest you take a good B complex instead of the individual B vitamins. They are all needed for stress and also make sure you are taking a high dose of Folic acid, at least 1000 mcg (1 mg).

You should get your hemoglobin level checked and also have your spleen examined. I assume you are in the US. If you need help finding a thal familiar hematologist, let us know. Even though you are minor you still need the proper diagnosis and recommendations. And yes, don't take iron unless you have had a blood serum ferritin test that shows you are iron deficient. This can happen in minors but is fairly uncommon and iron is almost always uselss for minors and can cause damage over time.
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Andy

All we are saying is give thals a chance.
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« Reply #3 on: April 23, 2006, 09:14:29 AM »

Hi Chuck,

Lower back injuries can cause tingling in the legs.  See this site:
http://www.nlm.nih.gov/medlineplus/ency/article/003108.htm

It can be difficult for doctors to diagnose many conditions when the symptoms for those conditions are variable, or the symptoms can belong to a number of conditions.  In your case it might be difficult to see whether the symptoms are linked to one cause, or if there are many causes.  As Andy has suggested, it might be worth visiting a haematologist who specialises in thalassaemia and having that side of things checked out.  If all is ok there, you can cross that off the list of causes for your symptoms, then move on to check the next possible cause.

If you have a good relationship with your GP, you might be able to discuss with him/her your concerns and explain that it is very important to you to get it sorted out.  Sometimes doctors need to be reminded that the 'consumer' (or patient) needs to understand why things are happening to them.  Sometimes you need to jump up and down to get this point across!  Even good doctors can have bad days in their lives - they are human too!  If you are not happy with your GP I would endeavour to find one that you feel you can trust and communicate with.  Personally, I need to feel that my GP will be thorough in getting to the bottom of things and will not just dismiss me.

Good luck!  I hope you are feeling better soon and are able to find out what is happening to you.
Sal.

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