Hematologist in Stanford Hospital - Thalforum

earth · October 28th, 2009, 01:40 AM

Today I took my 4 year son with 9.6 Hemoglobin to meet hematologist in Standford hospital. He basically said my son is ok,

"He just has Beta thal minor, and the fatigue which he is currently facing has nothing to do with the Thal as it is just a trait ".

I got upset with him, and told him about this forum and several others, where people have similar complaints about being tired and exhausted all the time. He basically refused to admit that Beta Thal minor can cause any such thing. He said it could be due to lack of sleep, poor diet, poor intake of water etc...

How can we educate such dump @@$ Dr's. It was complete waste of my 3 hour wait there.

My Ped send me there, saying he might have Alpha Thal as well. but this fellow said Alpha Thal can't be tested through simple blood test, Iam totally confused... about Alpha Thal.. Any insights on this are highly appreciated.

I will Never ever go to Standford Hematologists ..

Thanks
Earth

Narendra · October 28th, 2009, 03:54 PM

I can understand what you are going through. This is hard as doctors just turn a blind eye for thal(minor)

Go to this link and we see there is a study done and it shows thal(minor) do have symptoms
http://www.ncbi.nlm.nih.gov/pubmed/18341640

Send me a personal message if you want the pdf file of the research mentioned here. I cannot upload it here. Take it with you to the doctor and show it to them to prove there is a reason why you are meeting them.

Quote:

My Ped send me there, saying he might have Alpha Thal as well. but this fellow said Alpha Thal can't be tested through simple blood test, Iam totally confused... about Alpha Thal.. Any insights on this are highly appreciated

While I do understand your frustration with the doctor, he is right - Alpha Thal is difficult to diagonise with a simple blood test (read Hemoglobin Electrophoresis). You might want to get a DNA test done. Dr. Vichinsky (from Children's Hospital Oakland) at the conference last week in New York at the Academy of Science did mention it is very important to get the testing for Alpha thal trait done.

mlangas · January 13th, 2010, 07:37 AM

Earth,

You have our sympathies. I've had very similar experiences as have we all. I wish I had more to offer, but keep these things in mind:

Even if your doctor admitted the symptoms were caused by Thal Minor, he wouldn't be able to do anything about them anyway. As far as thal minor goes, the medical communities toolbox is empty. As frustrating as it is, your best treatments are the typical diet and exercise advise. I've found ignoring these things aggravates my condition. As important as it is for everyone to eat well and exercise, I think it is doubly so for those of us with Thal Minor.

That being said, 9 seems low to me regardless of the Thal Minor. At my last visit, the hematologist was ignoring hemoglobin levels around the 11 and 12 range, but I believe even he would have been concerned about 9.

Mike

Nadia · March 27th, 2010, 11:28 AM

I do sympathise, I have had a recent similar experience in the UK. I am ALWAYS tired, feel down etc etc, I know it's due to the thal minor, my mother has told me that I was a quiet child, that was tired all of the time, and is amazed at the energy my own 2 daughter's have, I will ask for them to be tested for thal minor when they next require a blood test, but I would put money on it, based on their energy levels that they haven't inherited it.

I agree, that because the doctors don't know how to treat it and boost our flagging levels, they just send us away and tell us to get on with it, after all, this isn't life threatening. However it is life limiting in my view.

x