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MDS Myelodysplastic syndromes

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Old Tue Feb 19, 2008, 07:45 PM
Resy Resy is offline
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Question Have symptoms, no dx.

I hope this works, I'm a new member. I have not been dx'ed yet, but what started out as an iron deficiency turned out really weird and I was wondering if any of you had a similar problem. My iron was 28 and iron saturation was 6%. The PA put me on iron pills 325mg. twice a day. I didn't take them due to the awful stomach aches they cause. I took a prenatal vitamin everyday with 28mg. of iron in it. A month later my iron was up to 191 but I still felt awful and it has only gotten worse. Palpitations, when I workout and do cardio especially I have a hard time breathing, and it feels at times like I will pass out, fatigue, tiredness, headaches, and most of the time the slightest exrtion wears me out. The hematologist looked at my blood values and said it would be a waste of time to see her, there is nothing wrong. Now I can't get in to see anyone. Did any of you have those symptoms? Also my counts were screwy in the beginning, but the last count I had doesn't show anemia, even though I feel like I always did only worse. Can blood values show normal?

Last edited by Resy : Tue Feb 19, 2008 at 08:07 PM. Reason: delete
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Old Tue Feb 19, 2008, 07:49 PM
Resy Resy is offline
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Can anyone help me out? Thanks!

Last edited by Resy : Tue Feb 19, 2008 at 08:03 PM.
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Old Mon Feb 25, 2008, 10:12 PM
nursein06 nursein06 is offline
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Can't help you out, but I'm going through the same thing. My H&H have been low, my ferratin (which carries 02 to the blood) was FOUR a few weeks ago.... I'm having another CBC drawn and ferratin level to see what it's at. I can't handle any of the SE's of anything. I'm a half marathon runner who is now sooo inactive, and I can't blame it anymore on my 1 y/o daughter.

Has your doc checked a Ferratin and B12 level? I'm (I think) getting the Ferratin, and a B12 drawn tomorrow, along with a CBC. Just can't tolerate any of the iron I've been given, either.
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Old Tue Feb 26, 2008, 09:19 AM
sallyt sallyt is offline
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Hi Resy,

Welcome, and I'll try to help you. I have been battling this one for years. I have MDS and have been experiencing low blood counts and iron deficiency for almost 10 years now. My ferratin level is typically between 0 and 8--always depleted. I, like you and many of us, cannot tolerate oral iron medications of any form. It raises havoc with my stomach and digestive system. My hematologist has wanted me to go on a course of IV iron infusions for a couple of years now, and I've pushed back. I finally had to give in when a recent surgery was canceled due to low hgb & hct. I have my 5th infusion tomorrow (he has me on a course of 6--once/wk), and my hgb & hct are creeping up. I am also on a dose of 1 mg of folate/day and b12 shots monthly. I've been told I will probably need to repeat this course of treatment again. I don't have my ferratin level from last week yet, but it hasn't been that great. You may want to ask your hemo if you are a candidate for this. There are no side effects, as it bypasses your entire digestive tract by going straight into your blood system.
I do also experience palpitations (shortness of breath, etc.) when I am really tired, which is most of the time. Low O2 will do this to you. I also work out at a gym on a regular basis. It gives me more energy, but my suggestion is to take it slow if you are feeling like this, and check with your dr. about exercising.

Good luck!
Sallyt
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