Thalassemia Patients and Friends
Discussion Forums => Thalassemia Minor => Topic started by: Madwoman on August 30, 2014, 05:20:38 PM
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Hello,
I'm a BTM that's had normal HH for several years...13/37 range (used to run about 10.5 or 11), RBCs run steady at 6.5 or better, MCV always low around 65. Latest ferritin was 344. Had a hysterctomy when I was 33 for prolapse, kept my ovaries. Haven't had a smear done for several years so don't know what my RBCs look like. Still having the symptoms of shortness of breath and fatigue, even with the normal H/H.
slacked off on taking folic acid and recently tested a really low normal B12 and Vit D, so getting started back on those. I had hoped that the normal HH would alleviate some of these symptoms, but it doesn't seem to be happening. I will say that getting on HRT really helped immensely. I periodically go off of it to give my body a break, but the pain and fatigue always comes back after a few months off of it. The shortness of breath an decreased ability to do aerobic exercise hasn't changed since I was a kid. If there are any menopausal women here on the board, I would advise checking w/ your doc about HRT if you haven't already and if you don't have high risk factors of ovarian or breast cancer. It really made a difference in my life.
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Hello Madwoman
I was diagnosed with thalassemia just now that I'm 38 years old. I started to go to the doc because my pre menopausal symptoms when I was 37 and I ended up taking iron during one year doubling and quadrupling the dosages just to started to have every symptom you told here in your post. I have joint pain,fatigue,short of breath plus pain on my abdomen right side under my rib cage .i have been suffering from this chronically. I have been talking about it with my doctors but they fix their attention in other problems and not much interest for my abdominal pain . Just this last week I finally got then to send me to mark an appointment for an ultrasound of Abdomen this coming September 8th . Another thing I noticed is I'm having problems absorbing folate and this also helps to lower the Hb I believe.
I have had problems before with folate,other times with vitamin B other times with vitaminD but not like now.
I don't know if being pre menopausal gives me more problems.
I also live in southern Oregon,and fires season on Summer in California or in Oregon makes the air very dirty.
I do not know if I m having issues with the air around here also but I'm trying to figure out ,cause Since last year I noticed more hemolysis .
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I also have my hemoglobin around 10 but this is not normal it's considered low for my group age.
The funny part of it was that I went to the doctors complaining of fatigue again and I was informed that since my Hb is 10 this is normal for me, but after my folate come back low also and serum iron low I'm going to be seem by a hematologist also .however my ferritin is on range and transferrin serum also in range .
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When I saw a hematologist at the behest of my PCP, he cautioned me about taking iron, since my ferritin was elevated. Most docs seem to look at the obvious w/ thal minor, so approach iron supplementation cautiously.