Thalassemia??? Was wondering what other people's experiences were and when they were diagnosed?

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I'll start with as brief a back story as possible. I will be 43 in July and have been suffering from "anxiety and panic attacks" for well over half my life. I put it in quotes because now I am not so sure, I have been without medical care for over 2 years because I lost my insurance and cannot afford out of pocket expenses. I literally had the orders to get the lab work done to see if I had Thalassemia when I lost my insurance, and those labs aren't cheap so I have not had them done. I was diagnosed with pernicous anemia and was getting iron infusions and b12 injections and had just started taking folic acid when my primary care doc said she wanted to test me for the thalassemia. I am very overweight but other than that and the anxiety, I have always been healthy.  I have horrible symptoms ALL the time and have been to the emergency room more times than I'd like to admit, been admitted several times, had just about every test in the world done and they usually chalk it up to anxiety and tell me to follow up with my regular doctor, that I don't have. I have chest pains almost everyday, along with all of the typical heart attack symptoms, been given the all clear with my heart though. Even had a heart cath back in 2012 because they had run all the other tests so many other times over the years and found nothing. Anyway, long story short, I've been having a rough couple of months and have been to the e.r. 4 or 5 times now. I thought I might be having a stroke or TIA's or something like that for the past couple weeks.  I woke up one morning with blurred vision in my left eye, I tried everything, drops and rubbing it and making sure there was nothing in it. It eventually went away maybe 30 or so minutes later. Then I was fine for a few days. Then on this past Sunday I started having really bad numbness and tingling and skin crawling sensations all over my body, mainly my face, hands, and feet but it comes in waves and sometimes its my whole body. So it got really bad on Wednesday, I felt really uncoordinated, my palms get super red and tingly, like when you fall and slap the ground really hard, that sort of stingy feeling. I get that in my hands and feet and my face. Then I started to feel like my arms were weak, I was typing something for work and it was like I wasn't in control of my fingers. So since I've been told over and over its just anxiety I took one of my klonopin and waited, it did not get better, I was very calm but it didn't help the sensations I was having.  So after I picked my daughter up from school I decided to go to the hospital once more. They did a CT of my head, and ekg, and all kinds of labs.  The doctor I saw was amazing, you don't find many of them anymore, she actually probably spent about 15 minutes in the room with me, asking me questions, and looking at all my lab results. She thinks I probably have Thalassemia, Hashimotos, and that it looks like I am maybe pre-diabetic.  She went over what all the different levels mean, and how that might add up to these diagnoses. I've done my own research and while a lot of it applies to me there is a lot that doesn't. I was wondering if anyone that has been diagnosed with these diseases could share their experiences with me. I am still having these horrible symptoms and am really at my wits end. She referred me to a hematologist and an endocrinologist, definitely not something I can afford at all right now so I'm basically just having to be miserable. Thanks in advance

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2 Replies

  • Posted

    I had a similar issue two years ago. I started drinking more water every day and it helps
    • Posted

      Thanks Ally01381, I am already trying to do that, I am horrible at getting enough water so I'm working on it!!!

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