anemia sufferers unite (ie come listen to me whine) lol

lauren grier

lauren grier

you're like stars
I feel dreadful right now.. if you are also anemic you know that feeling. there's nothing really I can do. It's tied to my autoimmune disease (i don't make enough red blood cells. I don't really have a firm understanding), it's not an iron deficiency type of anemia. I'm on coumadin (which makes me bleed profusely) and have a copper iud (which also makes you bleed profusely) and am finishing up my TOTM. It's just awful :[ by day 3 I can't stop falling asleep randomly because my body just doesn't have any more juice (hah!) I'm on day eight now, and am pretty sure I've turned into the whiniest ghost of myself moping around on the couch. Those of you who don't have iron dependent anemia.. how do you deal with it? What makes you feel better? I haven't needed a transfusion or anything yet, but I swear each month it feels like I'm teetering closer and closer to that edge where I need to consider going to the dr. I'm currently avoiding my hematologist..because she upset me hah.. but she's never really had any advice or input on the anemia. :[
 
Girl, find another doctor that IS willing to help you with it!!! I hope you feel better soon!!!
 
I feel for you! I suffer from anemia. I have had a blood transfusion. It was 4 years ago this month. A few times I've been back to that place where I start to feel like I did then. It scares me. There is no kind of exhaustion like anemia exhaustion. You can't even think clearly.

Mine is iron deficiency but iron supplements do not solve the problem. It seems no matter how much iron I take, I am still anemic. My body doesn't use the iron efficiently, I suppose.

I feel for you on the bleeding too. I have awful bleeding during TOTM. Before my blood transfusion I actually bled like that for almost 6 months straight. My levels were not even detectable on that last blood test before I had the transfusion. I had a D&C immediately after to clear everything out and help the bleeding subside.

Mine is partially related to hormone imbalance (too much estrogen) and partially just to my body not effectively using iron. I've always been anemic but it got a million times worse when the hormone issue caused the bleeding issues which, in turn, created more of an issue with the anemia.

I wish I had some advice for you. It just an awful, sucky, helpless feeling.
 
You really need to find a doctor who will help you. Any form of anemia is nothing to mess around with and needs to be well controlled. I believe all forms of anemia affect red blood cells, so you'll need to learn more about your specific type. They're all treated a bit differently, but I've never heard of a patient with anemia going left untreated.

I have pernicious anemia (B12 deficient) and iron deficient anemia. How lucky am I to have two types? lol Pernicious anemia onset after my blood clots several years ago. They discovered iron deficiency after my most recent clot a few years ago. I'm on low dose aspirin to reduce my risk of clotting again. I'm glad to not be on life-long Coumadin because that stuff is so toxic. If I get another one, I'll have to start it again.

I take supplements for both now that it's well managed. I had to take B12 injections years ago and am glad I don't need to stick myself repeatedly anymore. I take low dose B12 several times a day as the body can only absorb so much at a time. I take an iron supplement 3-4 times/week and every day the week before and the week of Flo. Don't self dose iron as you can take too much. The body doesn't get rid of it like it does with excess B12.
 
I think mine is just called chronic anemia. When I originally presented I was deficient in b and d as well but they said that was unrelated (?) but I take supplements for that now. I'm a life long coumadin patient so I'm jealous lol and glad you aren't! It is so truly toxic. In my hemas defense my other blood stuff always takes prescedence. Maybe I just need to be a little more firm in the I feel like crap all the time please fix me. She told me at my last appt that I wasn't going to get any better :p that's why I've been avoiding talking to her again :[
 
Oh and I'm absolutely not iron deficient. My dr was pretty clear that I was not to take iron so no worries there lol
 
Nice to see a thread for us. My anemia slowly got worse over a span of about 4 years due to iron deficiency thanks to TOTM. By the time it was diagnosed, my doctor called me at 6:30 pm to tell me I should consider going to the emergency room for a transfusion. I did not, and have been trying to treat it with iron, but the root cause is still a big problem. We moved shortly after my diagnosis so I've mostly been going solo on the treatment. I'm planning on making an appointment to get my levels checked. I've been feeling pretty rotten for almost a month again.

Has anyone found a good iron supplement? I had a gel cap that had predigested iron lipids or something like that and I felt better quite quickly but it KILLED my stomach. Then I tried Floradix but it gave me heartburn and did not seem to supply my needs at all. Now I'm taking something with 360% of my daily requirement, but only three times/week.
 
All the lifelong side effects, blood thinners, and chronic problems is unpleasant. Make them make you feel better. If someone tells you that you wont get better, you find someone who knows how to make you better. There are some great doctors out there and some really bad ones and a whole lot of them in between. Keep on them, girl.
 
gethane said:
Has anyone found a good iron supplement? I had a gel cap that had predigested iron lipids or something like that and I felt better quite quickly but it KILLED my stomach. Then I tried Floradix but it gave me heartburn and did not seem to supply my needs at all. Now I'm taking something with 360% of my daily requirement, but only three times/week.
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I take the Gentlesorb Iron supplements from GNC (18mg). Any of the iron supplements really should be taken with food, even though the bottles don't usually state that. They're very hard on the stomach and iron is very difficult for the body to absorb. Taking with food seems to help both those things. I take mine with breakfast after I've eaten a little, then I down the pill, then I put more food on top of it. That's the best way I've had luck without burping the thing up all day.
 
Pregnancy anemia here. Not as bad this time as last. My OB said that I should always take the Ironnwith vitamin C (like a glass of OJ) for better absorbsion. I have found that I can tell how my body is doing on iron based on my bowel movements. Too little iron and they are too soft. Too much is the opposite. I trust the way my body reacts more than what a doctor's generic prescription says.

Lauren, listen to your body and make your doctor listen too! No one should live 1/4 of their life miserable! Have they checked your anemia levels at different times of the month? Maybe you new something else during that time that you may not need the rest of the month.
 
After passing out and getting a concussion from the fall (hitting my head in the door frame and tile floor), I discovered I am anemic. It is iron deficiency, and definitely as a result of the annoying little polyp that's making my TOTM super duper heavy. Not fun. The exhaustion and side effects from anemia are CRAZY bad. Worse than I ever thought. I am taking an iron supplement but I don't think it's working, I'm going back to the doc next week.
 
Sucks that there are so many of us. Anemia sucks. :( I've told people that I have always considered myself a 'tired' person. I've been anemic since I was a little kid. I don't know what it is like to not be tired. :(

Today I have been dizzy and crunching ice all day. Definitely a sign I should have my blood drawn. Fun stuff...
 
I've been borderline anemic all my life and have had to take supplements off and on since I was a child. all three of my pregnancies sent me completely over the edge and there was talk of transfusions, but luckily I delivered and it became more manageable again. I haven't had any real issues for a few years now, but the newer liquid treatments def sound like a better alternative to the more traditional options I've done in the past.

and as the others have said... seriously, Girl! you need to Doctor Shop!! anymore, if I find a doctor to be rude or condescending I simply get up and leave mid-appointment. needless to say, I've been through five dermatologists in the past 2 years and am so happy to finally have someone that actually listens to what I have to say.

feel better soon, La. bighugeginormoushugs xo
 
I will say this, I am so anemic, iron here also. But I refuse to take my iron supplements. My doctor has prescribed so many different ones, but they all make me feel sick and constipated. Yeah... I'm cool with being tired, dizzy, constantly cold, and getting blinding headaches. I don't take the messing with my bowel movements lightly. lol
 
Another iron deficient anemic here. I think you should definitely take the doctor shopping route! My doctors always seem to not be phased by what I'm telling them. they just put me on iron tablets which make me feel rotten to the point where it becomes a task to even get out of bed without wanting to throw my guts up. :( Saying that, I haven't been in a while, I probably should book an appointment as I'm in the middle of moving house and it's definitely taking it's toll on me!! I hope you find a nice doctor who's prepared to listen and help you!
 
I'm sure you are too many meds right now to even thing about another one, but I know there are few that help red blood cell production. Has your Dr. mentioned those? Maybe they are already out of the question due to your other meds and conditions.

I'm with Loni on getting a new Dr. I'm sick of condescending Dr.s that are of no help. They are there to provide a SERVICE...WE are paying THEM. Find one that will do anything and everything to help you feel better.
 
Thanks girlies. I think I'm going to have to go up to Boston for better care. She was part of the team that took care of me when I was in the hospital but long term treatment is clearly not her forte :p her staff are also completely terrible. It's time for me to look around more :[
 
I also have Iron Deficiency Anemia and B12 Deficiency Anemia. I this may sound wacko, but my OB/GYN put me on a new BCP called Lo Loestrin FE that has iron with it as most BCP's deplete your body of iron and I feel tons better and on the plus side with this particular BCP I stopped having periods all together and rarely have a occ. 1 day very minimal period and like many of you other ladies my TOTM's were horrid and very very heavy, crampy and painful. Now, nothing at all and no symptoms except for maybe slight cramps the week before my due TOTM. I also take sublingual B12 and when I do take my meds regularly I feel much better.

Iron deficiency anemia and B12 deficiency anemia are the pits because your body just does not absorb the B12 and Iron from the foods that you eat like they should and therefore you have to take sometimes horrid meds. Mine have never been bad enough to require transfusion but my boss who is a Internal Medicine doctor monitors my levels very closely.

I hope you find a hematologist your are comfortable with and can talk with them about how you are feeling and helps you to find the best possible way to help you feel better. I know the cold hands/feet, tiredness, etc. are very hard on a person! Good Luck!
 
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