Struggling with Thalassemia Intermedia

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Struggling with Thalassemia Intermedia
« on: May 21, 2014, 05:24:24 PM »
Hello my name is Kathy.

I was diagnosed with Thalassemia Intermedia last year after years of being missed diagnosed and treated with Iron deficient. I recieved Iron infusions and I have been missed instructed by every doctor I have ever seen to take Iron pills  ???. My hemoglobin averages a low 8 and continueously drops to a low 7, that's when I usually get transfused. I've only reached a 10hmg,  once Im transfused.

I recently moved and applied for the new affordable insurance in my state, however I still am waiting for it to begin. In the main while I can only see am internal medicine doctor at my neighborhood clinic who insist that He can't help me and I should learn to live with feeling miserable because its not much a hematologist can do for me either.

He insist that I get on anti-depression event though I have not been expressing depression just frustration because I haven't encounter a doctor who really wants to help me. I've gone to the hospital for light headed and nausea as well as fainting spells and once my hmg levels are 8 they tell me they can't help me and I should go to a my "primary care".

I don't know what else to do. I've already been approved for insurance but until I receive my package I am unable to go to the hematologist. I'm consistently nauseated and light headed. I've fainted several times in the past month. This disease has always interfere with my ability to complete school and maintain a career. After talking to a doctor that pressured me into taking anti-depressions instead of trying to help my thalassemia, just made me begin to loose hope. How can I maintain a life like this.

I've been on wheat-grass since January and I have experience minimum improvement.


Please help.

Sincerely,
 Loosing Hope
« Last Edit: May 21, 2014, 07:13:15 PM by KathyMina »

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Offline Andy Battaglia

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  • Will thal rule you or will you rule thal?
Re: Struggling with Thalassemia Intermedia
« Reply #1 on: May 21, 2014, 07:48:43 PM »
You need to contact Eileen at the Cooley's Anemia Foundation. She can direct you to a thal-familiar hematologist. Until you see one familiar with thal, you will be met by the same ignorance that you have encountered all along. Please do not hesitate to call. Eileen does a wonderful job helping those with thal find proper treatment. There are hospitals in the US that have dedicated thal centers and you should be seen at one of them at least once per year. Where are you located?

Cooley's Anemia Foundation
330 Seventh Avenue, #900
New York, NY 10001
(800)522-7222
Fax: 212-279-5999

Patient Services Manager
Eileen Scott
eileen.s@cooleysanemia.org
Andy

All we are saying is give thals a chance.

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Offline Bostonian_04

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Re: Struggling with Thalassemia Intermedia
« Reply #2 on: May 21, 2014, 07:52:17 PM »
Kathy,
Please note Andy's comments and make the phone call to Eileen. Just seeing any hematologist is not going to help you. A hemo that knows about thal is needed to turn your health around. Please don't loose hope. everything will be ok soon. by the way, where in US are you located?
Quis custodiet ipsos custodes ? - Plato

 

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