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Post by italialynn on Jun 12, 2008 9:25:46 GMT -5
Good morning ladies, I have recently (yet again) been diagnosed with severe anemia. After my passing out episode in January (which was chalked up to low iron) I just had my follow up with my OBGYN three weeks ago. She did a quick hemoglobin test in the office, and it turns out my hemo was lower a few weeks ago, 8.8, than it was the day I was hospitalized (9.8). She referred my to a hematologist since it's not getting any better even with my continued supplementation and high iron diet. I saw the new Doc yesterday who I really liked. Seems like she is really interested to find out what's going on. She drew 6 tubes of blood (holy moly did that take a few hours to recover from) and said she was going to run a whole new slew of tests. She suspects that I have the moderate form of thallessemia, which is an inherited disease which is mostly common in mediterannean people, like myself. Normally the parents have a trait and it's recessively brought down to the children but normally it doesn't cause any problems. It's basically a blood disease in that your red cells are smaller than normal, therefore not being able to carry enough oxygen and iron through your body. I've obviously had this my whole life, which is why I've always been slightly anemic, but now because of the endo and the amount of blood "it takes up" I've become very symptomatic. After all the tests come back, I'll start iron IV therapy to help boost my levels, and if that doesn't help me feel better, I'll need quarterly blood transfusions. I'm just wondering if any of you girls have had a similar situation or have been diagnosed with this same condition, and if so, anything that made you feel better?
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Post by ouchy on Jun 12, 2008 11:19:34 GMT -5
Oh wow. I'm so sorry you are suspect of thallessemia.
Before you even attempt to get pregnant, you should speak to a genetic counselor. My friend's daughter has thallesemia, and she married a black guy who happened to be a carrier of sicle cell anemia. Somehow, the two anemias paired up, and the baby will need transfusions forever. Apparently, after a year or two of life, it can cause really bad problems for the baby and baby will be in really bad pain. There is a Thallessemia clinic in California that has I think like a 60% "cure" rate w/ gene therapy, but that's still scary.
Just be sure to get a "for sure" diagnosis and speak to a counselor!
Awwwww.
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Post by italialynn on Jun 12, 2008 12:05:04 GMT -5
Thanks Ouchy...I started thinking about that late last night in bed. We've been trying to get pregnant for 2 1/2 years now and I had a sick feeling in my gut while laying in bed that even having children might be an issue. Not only for me carrying a pregnancy, but I certainly don't want to pass this onto my children! When I go for my follow-up in a two weeks I'll certainly ask for a referal.
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Post by ouchy on Jun 12, 2008 12:26:05 GMT -5
good luck & keep us posted! you're in my thoughts!
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Post by italialynn on Jun 26, 2008 9:48:14 GMT -5
Sooooo, just got back from the hematologist. Looks like I'm positive for Beta Thallesemia minor. Good news is I won't need transfusions, bad news is there's nothing they can do for it. The iron regimine they had me on was actually almost at a toxic level, since it's not an iron problem, and simply a defect in my red blood cells. She says it shouldn't really account for my severe fatigue, thinks it's more the endo. But with this disorder, your cells are smaller than normal, so technically they don't carry as much oxygen and iron through your body as a normal person. That in turn causes minor fatigue. Good news is all of my other bloodwork looked great. All my vitamin levels, organ functions and such were tip top. Next step is to have my hubby tested. If he doesn't carry the trait, we're good to go in the baby dept. There's only a miniscule chance that I could pass the trait to a young one, but if he's also a carrier then we're SOL. I don't think he will be because he has no mediterranean ancestors, but you never know. The Doc told me to have him stop by and they'll pull blood on him. I just hope we're good to go. I don't think I could take anymore road blocks....
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Post by tmichelle on Jun 26, 2008 11:29:07 GMT -5
I'm hoping for the best!
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Post by italialynn on Aug 1, 2011 9:22:36 GMT -5
Well, surprise surprise, this issue is rearing it's very ugly head. I started feeling pretty awful about a week and a half ago, and lo and behold the pregnancy is causing me to have major issues with my thalessemia. My hemoglobin is down to 8.4. I have NO energy, I can't make it up a flight of stairs without losing my breath, I'm constantly dizzy and spaced out and just generally feel awful. This baby is taking everything I have. I saw my hematologist on Thursday and the outlook for myself isn't very good. They did another slew of bloodtests, and my only options thus far are trying extra supplemental iron first, then IV therapy, then blood transfusions. I have a pit in my stomach that I won't be able to carry the baby to term. I'm 13 weeks today...I can't even begin to imagine how I'll feel down the road if it stays put. I'll let you girls know what happens. I have an ultrasound tomorrow to see if everythings ok. Just keep your fingers crossed....
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Post by JC on Aug 1, 2011 10:38:32 GMT -5
OH my goodness. This is really scary. When you're pregnant, your body is supposed to naturally increase it's blood volume and I can imagine how this is really taking its toll out on you. I'll be thinking about you! I really hope that you will be ok!
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Post by 1234 on Aug 1, 2011 10:47:55 GMT -5
Talia, this is heartbreaking. I hope you get some better way to keep your blood up soon.
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Post by hellsbells on Aug 1, 2011 14:49:27 GMT -5
Babe, fingers toes and everything else crossed xx
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Post by pretty on Aug 1, 2011 14:51:12 GMT -5
Oh Honey! crossing it all for you. hugs!
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Post by Karen on Aug 1, 2011 18:49:36 GMT -5
I have every confidence that you'll carry to term, even if it's super hard on your body. You've made it this far, Talia, and there ARE things they can do to help you. May not be easy, but I'm confident it won't be impossible!!
I know it's a totally different situation, but after my cousin had her baby, she lost a ton of blood and was taken to the ER twice. She lives on the 3rd story of a building without an elevator. She said she had an easier time climbing the flights of stairs when she was 9 months pregnant than when she was super low on blood. I guess what I'm trying to say is that I can kind of get a grasp on the toll it's taking on your body. If it's any consolation, she felt a gazillion times better after a blood transfusion or two!
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Post by italialynn on Aug 2, 2011 6:50:34 GMT -5
Thanks ladies, you're all the best Got some additional bloodwork back...my iron and ferritin levels were actually out-of-range high, so supplementing me with iron isn't an option. I have my OB today and my hematologist again on Monday. I'll need blood draws every other week, and I'm assuming if my hemoglobin gets low enough, that's when they'll consider a blood transfusion. On the upside of things my husband has been absolutely wonderful and waiting on my hand and foot. He's even parked on the couch with me every night which is a RARITY for him! Normally he's always doing something. We've gotten addicted to the Dexter series...watching like three episodes a night!
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Post by JC on Aug 2, 2011 9:47:27 GMT -5
Aww how sweet that your husband has been there with you. That's really awesome! Keep us updated on the blood draws and your treatment. I get worried
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Post by Karen on Aug 24, 2011 19:52:00 GMT -5
How are you feeling, Talia?
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