Anemia Support Group

Hello all,

I've been sick for about 3 months now and being tested for everything. I've had bloodwork and MRIs and everything came back fine except for one thing. My iron was terribly low and Dr says I have no iron stores. Now, this surprised me because last summer I was anemic (8.4 hemo) and started iron supplements. I felt tired and had pounding heart but that was really all. My anemia went away fairly quickly and I admit, I slacked on taking supplements after 4 months or so. I know, bad girl!

Fast forward a year, and I start getting weird symptoms. Tingling, numbness the WORST fatigue I have ever experienced. I'm weak. My heart beat is fast (110). I go to Dr and tell them I must be anemia again. They check and guess what? No anemia. I get more tests and they discover the low iron stores. What confuses me is I wonder why I feel -worse- now than I did when I was anemic? Apparently, I have had low iron for years to get in this condition ( VERY heavy periods since I was 11 ) and the Dr thinks it has just reached the point where all my systems have been robbed and it's making me feel this awful. Does that make sense to you all?

Anyway, I still feel horrible after 5 weeks of supplements but my iron is coming up nicely. Dr says it will take months to rebuild stores and probably 3-4 months to feel much better. I guess some of my symptoms are slightly reduced but at such a slow rate that it seems like I will be sick forever! I look forward to day when I wake up and my tongue isn't sore or my skin isn't so dry or when I don't have to take a nap most days.

Well, that's my story so far. I'm not anemic ( hemo is nearly 13 now ) but this seems like the right place to be. Has anyone else here suffered from low iron, not anemia and felt sick because of it? Is anyone else so sick they can barely clean their house?

Thanks for reading!

Welcome Alhanna!

Oh - most of us have been so sick we couldn't get out of bed or off the couch. It's awful. Make sure you keep hydrated too and try to get in a little cardio exercise.

Good for you you're back on track - I know iron supplements aren't fun, but with constant heavy bleeding (how have you address that??) you're in a constant battle. Remember that the more you invest now, the quicker the payoff.

So sorry this took so long. I just went to the Dr again and discovered that my iron dose must be too low. While my iron sat has come up and my hemo is still good at near 13, my ferritin is creeping downward. It's at 9.3 from 17 or so 10 months ago when this all started.

As for the heavy bleeding, it had eased up for a few months so we thought I was in the clear but the last two have been horrible. At this point, I have to decide between birth control pill, ablation and a device ( the name has slipped my foggy mind) which will eventually stop my flow. For now, my dose is doubled and we may triple it after my next blood test. I just get to hurry up and wait. Very frustrating when you feel like you live in some sort of foggy dream world.

My Dr also informed me that I had trace blood in my urine and I repeat that test next week. If it's not the low ferritin making me feel ill, maybe it's to do with that. At this point, I'd just like an answer. When I ask doctors if the low ferritin can make me feel this bad, they kinda shrug and say, "It caaaaaan." The way they say it is not very convincing. I can't seem to grasp why I feel worse than I did when I was actually severely anemic, just without as much angina. Any ideas?

That same thing happened to me - I felt better at 7.8 than I did at 10.2. Again, the hyrdration should help - but don't over do it. Have you been checked out for fibroids? My anemia was from a fibroid and I was hemorhaging regularly. I bled for 5 months straight. Just note that according to my non-invasive surgeon - hormones are NOT the answer for that. I'm not sure how old you are - but do NOT have ablation done if you want to preserve your fertility. Hope you can find some answers soon. Keep us posted!

Hello again, all. It's been a while. I have my iron checked every few months right now and while my iron blood level is good, my ferritin is dropping. It went from 17 to 13 to 11 to 9.3 and just last week to 6.3. Ugh. I take 3X 325 mg ferrous Sulfate a day. It gives me heartburn. I am now starting on birth control to control my extremely heavy bleeding every month. No history of fibroids... just always have been heavy. I'm hopeful that once I slow the "leak", my iron stores will start to creep up. We'll see!

I also want to thank you, Cbelle for your encouragement. I have felt very alone at times with this. My hubby is military and we are stationed overseas right now. I didn't even have time to make friends here before falling ill so it's been difficult. No one seems to understand that something as simple as low iron stores can make you feel as if you have the flu some days. I tire very easily which I assume has to do with oxygen and my fast heart rate ( 100- 110 ). So thank you for taking time to reply. It really does help. I hope you are getting better day by day.

Oh! Ablation is still something I am considering as I am done having children. Mine kids are 17 and 15. I'd like to hear from anyone who had it done because, frankly, I'm a big chicken. Thanks!

Hi Alhanna, thanks for the update.

I hope the birth control has regulated your cycle some and you are experiencing a lighter period. I haven't had ablation, but it's a farely common procedure. Have you had your hormone panel done? Homeopathic docs or a compounding pharmacist can do this for you. Sometimes more hormones work and sometimes they make it worse.

Keep us in the loop, ok???

Thinking of you...