Tuesday, May 05, 2015

A PSA About Anemia

Soooo, everyone knows I have anemia because I gripe about it weekly on Twitter and Instagram, but I'm posting this post in the interest of helping someone else who may not think anemia is a big deal or may be avoiding a follow-up doctor appointment.

But I'm getting ahead of myself...

About three years ago I went to the doctor, which I rarely do (luckily), for a sinus infection or something. The physician's assistant wanted to do blood work since I hadn't had it done in forever. Low and behold...low iron.

I've had iron deficiency anemia on and off my whole life. Like, since infancy. For my entire life, whenever this issue would crop up, I would take a month's worth of iron pills and all was right with the world for another few years.

Because this has been an ongoing problem since I was a kid, no one ever really explained what havoc anemia can wreak with your system and how very serious it can be if it gets out of hand. For this reason, I took my iron for a couple of months and never went back for a follow-up. My mistake, for certain, but also the PAs mistake for not explaining how very low my iron was at that time. I probably hadn't had blood work done since my previous bout of anemia, when I was pregnant with my son, three and a half years earlier.

Fast forward to December of 2014. I went to the doc for a nagging ankle injury and another innocent blood test showed that my hemoglobin was seriously low. Finally, people started explaining to me how serious this could be.

  • No iron absorption, no production of red blood cells
  • Fewer red blood cells, less oxygen carried throughout the body
  • Less oxygen and less blood, heart palpitations, shortness of breath, chills, ice chewing, severe fatigue. 
My transfusion. Long, exhausting, expensive, done in a hospital.

Whoa. I had all of these things and my hemoglobin was so seriously low that after trying oral iron supplements, I still had to have a blood transfusion. When the transfusion didn't raise my hemoglobin count above "critical," I had to start seeing a hematologist. More iron supplements, more iron supplements, more iron supplements. 

The crappy thing about iron supplements is that they can't be tolerated by a whole lot of people. For me, it got progressively worse: stomach upset, mostly. And when I wasn't willing to put myself through that hell any longer, and when my numbers weren't going up because I couldn't take the iron, we decided to start iron infusions. 

So now, a year and a half later, lots of exhaustion and huffing and puffing, plenty of heart palpitations, and some damn scary realizations on my part, I'm getting one iron infusion per week for five weeks. The infusions are different from a transfusion. The transfusion is adding blood to your body. The infusion is dumping bags of iron into my blood to enable my body to make its own red blood cells. When my five weeks of treatment are over, I'll probably have to have three-month lab check-ups and additional infusions in the future.

This is IV iron. Looks a bit like blood...or rusty nail water. 
If I'd been better educated I would've done everything in my power to make sure I didn't get here. My gynecologist put it into perspective when her mouth fell open, and she said, "You would die in a car accident." 

Not enough blood. 

I've been asked lots of times if I felt bad while my hemoglobin was on the way down. The truth is, until I got critically low, I just thought I was normal tired. Tired because I have three jobs, I write a lot on the side, I have a family, I often have insomnia. But let me tell you...if you wake up feeling like you never slept, if you get winded walking from your car into your office, or if you mow through cups of ice....go get checked. Even if you don't do those things...if you have any history of anemia...go get checked. Take it from me, critically low is a bad, bad place to be. 

My doctor tells me that I should begin to feel better, more like myself, by the time I have infusion number three. That's next Tuesday, so wish me luck! 



62 comments:

  1. Oh my God, Andi! I knew it was bad, but didn't realize how bad it was until this post. Thank you for explaining it all to us. Like you, I've dealt with anemia for years, but took my iron supplements for awhile until I felt better and then stopped. I'm anemic now and it's something I've taken lightly even though I'm pregnant. When you tell us exactly why anemia is a bad thing like you have (and my doctors also haven't), I really get it. Going to take my iron pill now...

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    1. Tell me about it! It was like a smack in the face when my gyno said that. I wish someone had explained the repercussions to me along the way, but so many doctors gloss right on over it. Take your iron! :)

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  2. I have had seriously low iron before, too (so low that when they tested it, they were shocked that I wasn't hospitalized), so I know it's a big deal. Do they know why it's low? Have they tested other things when they've done your blood work? (When mine was that low tons of other stuff — female hormones but also serotonin and all those types of hormones — was crazy crazy low too, which is why I ask.) And I should have been getting enough from my food.

    I never had infusions. I took mega doses of bioavailable oral iron (and other vitamins to help absorption) for months and months, but it was barely creeping up. For me, the problem was absorption. I wasn't absorbing the things my body needed from my food OR supplements. Now, thankfully, I'm healed (with a gluten free diet, and many years of it, under my belt).

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    1. (I know other people's situation is not necessarily the same as my situation, but I'm so glad to cross off that possible cause for headaches off my list.)

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    2. They don't know why, but they are checking into some different things. The usual stool samples (gah!), they've done some genetic tests, etc. I do absorb iron, from food and supplements, but very slowly. At this point in time most likely inhibited by antacid medication since I have persistent reflux.

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  3. Oh man, ANDI! Always always always have your annual check-up! I am so glad that you're getting this dealt with and I hope you feel better soon. Thank you for sharing -- honestly, anemia can be serious if it goes unchecked.

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    1. You know what, my doctor has never once asked me to have an annual check-up. I have my woman appointments but my general practitioner has never once made me have an annual. Whether it's my age or the fact that I've never had most of the health problems my family is plagued by, I don't know. Or maybe a shitty PA. No idea. But I definitely will initiate it on my own after this.

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    2. I'm glad you're dealing with it. I find comprehensive annuals are just a good way to keep tab of things. Do it -- think about it as a gift to yourself every year ;)

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  4. Fingers crossed you begin to feel better!

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    1. I think I'm on the up and up. This morning, after the second infusion, was the first day I felt like I got some rest when I slept.

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  5. I am so sorry that you have to go get infusions, girl, but it is awesome that you are posting this to let other people know to keep track of their bodies. Hugs.

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    1. I try! I really had no damn clue. It was just an, "oh well, that annoying thing again." I know someone else out there is probably thinking the same.

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  6. Wishing you lots of good health, Andi! I had to have iron infusions several years ago (five too!) and what a difference they made. My doctor was ready to put me in the hospital too. Scary for sure but luckily the iron infusions helped and got me back to normal. Hope all goes well with your infusions and here's to feeling better!

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    1. Thank you! I'm finally feeling a bit better, after the second infusion. Here's hoping I feel golden by the third! I'm so glad the iron infusions helped you, and I hope they fix me up for a longggg time.

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  7. I've been there with anemia, but never that bad. I'm so sorry! It's weird when you start craving ice. I thought it wasn't a real thing until it happened to me. Luckily supplements have helped me. Hope you are on the upswing, girlfriend.

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    1. Isn't it??? I can't imagine what it'll be like to NOT crave ice. lol I'm glad supplements helped you and you didn't have to go to this extreme!

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  8. Thinking of you and hoping the infusions work and you feel better. I actually used to have the opposite problem. Too much iron. Wish I could give you some. :-)

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    1. Thank you, Kristy! I know a few people who have too much iron. Let's all share! lol

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  9. Best of luck to you! I'm so glad you're taking care of yourself. Also, this was a great reminder for me to go take my iron and B12 (low end of normal for both and I've been dealing with fatigue).

    So glad you're getting mileage out of that dancing red blood cell. :)

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    1. Thanks, Shaina! One of my colleagues has low B12 and it messes with her, too. That dancing red blood cell is THE BEST.

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  10. Good luck, Andi! I hope you feel better soon!!

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    1. Thank you! I think I'm on the up and up!

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  11. I've had an iron deficiency as well. I had to get iron infusions for 8 weeks once. It was not fun. I hope you can get yours under control. Feel better soon!

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    1. Thank you, Jenni Elyse! I think I'm on the mend, which is super exciting. I woke up this morning and didn't feel as crappy as usual!

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  12. I am tired all the time. Years and years of it. I'm getting my thyroid levels checked next month (standard annual thing with me) and I'm going to make sure my doctor added for them to check my iron levels, too. Just to be sure. So sorry you're dealing with this! :( Feel better!!

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    1. Thank you, dear! I hope all your levels are great and you're just normal working mom exhausted. You know what I mean.

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  13. Oh my gosh, I had no idea! I hope you start feeling better soon, Andi!

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    1. Right?? This shit is crazy. That's why I figured I'd better tell the whole story instead of just bitching on social. lol

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  14. Glad that you are getting treatment and hoping that it will help the problem. What I want to say is - don't neglect those annual appointments and well woman checks. All kinds of things can show up. Our lives are so fast paced these days, we ignore symptoms that seem like they are due to a busy life or lack of sleep or whatnot. Find a doctor you trust (I've been going to mine for over 25 years) and keep up with the routine exams. In the long run, it's so important. And, Andi, thanks for sharing this. It maybe just the thing that someone needs to get some help. Take care!

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    1. And I'll tell you what I told someone else further up in the comments. Get ready for it because it'll blow your hair back. My doc (general practitioner) has never breathed a word to me about an annual appointment. I got for my girly appointments like clockwork but my family doc never has even mentioned it. Not sure if that's related to my age or my lack of other health problems or what. I'll initiate them on my own now. Or get a new doc!

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    2. I'm trying to remember when my regular doc started me with the annual appointments. I think it was after my thyroid started having issues. So, I have bloodwork annually to check that and all kinds of things. She is very good though and she knows me after so many years. She sussed out gall bladder issues for me over 20 years ago, without the scans that followed. She also sent me for ultrasounds that eventually discovered the ovarian cancer that I had. I described things and she just sat there for a minute and said, "Ok, I'm going to send you for....". You should talk to them about it and initiate on your own. Regular checking can catch all kinds of things. I'd recommend my doc here, but it would be long drive for you. LOL

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  15. I hope the treatments bring back the pep in your step! Get better soon.

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  16. Can't wait for you to feel even better! You get so much done when you're short of blood I can only imagine how unstoppable you'll be when you're at full capacity!

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  17. So sorry you are having to deal with this! Hope the infusions do the trick, and you can get into a more easy to manage routine with it. Chronic health issues can be a bear at times, but the investment in treatment to get them to a manageable state so you can enjoy life is so worth it. Praying all goes well for you.

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    1. Amen! Amen, amen! I can't WAIT for manageable!

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  18. Oh man Andi! So sorry you have to deal with this, but I'm glad they've got a plan. I have fatigue problems and my old doctor did a huge blood test and found nothing, diagnosing me with CFS, but telling me nothing about it. So I'm thinking I should probably get checked out again by new doctor and track some symptoms.

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    1. I wish you luck with that. The more I talk about this situation the more I realize I need to shop for a new doctor.

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  19. Before you even wrote this post you'd inspired me to go to my doc. I've been anemic all my life, but lately i feel way more tired than usual. I've made my appointment and we'll see what they have to say. In the meantime, take care of yourself!

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    1. I hope all is well! But I'm so glad you're going to get checked!

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  20. Oh Andi, I do hope it gets better from now on with the infusions. It bothers me so much that from the first time they didn't explained to you thoroughly what the meaning of this could be. Three years your numbers were dropping! As a scientist it really annoys me that some doctors don't give the whole information to patients (not only with things like this, but with drug cycles, particularly with antibiotics) but then they complaint about the same patients not following through or "not taking care of themselves enough". I think it's great that you share your experience here since you have such a wide audience. Good luck and hope to see you feeling better very soon!

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    1. Yes, and the more I reflect on all this, the more I realize I need to shop for a new doc. Preferably a female one. My husband and I were talking fairly recently about the manner and amount of explanation/one-on-one time male doctors give vs. female. We've both experienced a massive difference, and while I'm sure that's not always true, in our personal experiences it is. I literally had to ask this PA, every time I went for anything, what was actually wrong with me. He would sit and type away on his laptop, never speaking, until I pushed. What a load of shit. He's not actually with the practice anymore, but it certainly left a bad taste with me.

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  21. Holy crap, that's scary. I'm so glad you know what you need to now to get back on track.

    And just a side note, even if it's not anemia, people really need to go when they feel out of sorts. I'm so anti-doctor but have had weird/off health stuff this past year. Turns out I was Vitamin D deficient. Most of us have pretty low counts, but mine was causing severe joint pain, headaches, and fogginess.

    Our bodies are weird, yo.

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    1. Weird indeed, yo! I'm getting that THAT AGE that I have to pay more attention to my body. Even though I really don't want to. lol I'm glad you got sorted!

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  22. Ugh - I'm so sorry you're dealign with this. It's beyond frustrating to not feel good most days and to deal with all the ongoing medical treatments. Keeping you in my thoughts :)

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  23. My word. I knew you were going through some stuff but I honestly didn't know how serious this can be for someone's health. My son is an ice chewer and he's kinda pale and I'm definitely going to be asking about this at his next check-up.

    Hey, way to go in being proactive and taking care of business, girl. Keep up the good work! I'll be sending you healthy, iron filled, vibes ;)

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    1. Tell me about it! I was damned clueless for a longgg time. Definitely do ask about your son. Mine is starting to go into ice chewing. They just took blood at his 5yo check-up, so I'll be following up on that.

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  24. My worst iron level was 6. The last time I went, I go every 3 months it was 9 so they liked that it went up but I go next week and I know it's low again. The shortness of breath and exhaustion has kicked in. I can't absorb the iron because of the Celiac so I am not sure an infusion would do me much good.

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    1. God, six sounds terrible! Here's hoping it's not as bad as you think and that it'll go up quick!

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  25. I'm just so glad you're getting the help you need and will feel better soon!

    I swear I'm going to get you a cast iron skillet for Christmas. You'll get more iron and it makes a great weapon.

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  26. Thank you for this post. Years ago, my bloodwork showed that I was a bit low on iron. My doctor at the time said it was no big deal but since I'm vegetarian, I should take an iron supplement and I would be fine. I haven't always been so great about doing that, but I'll make sure I do now. I had no idea how serious it could get, and I figure taking that iron supplement is a whole lot better than what could happen if I don't.

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  27. So scary! Glad your on your way to recovery!

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  28. I'm so glad these infusions will get your iron levels back up. It sounds very scary, especially what your gynecologist said! I think often we think being tired is just a run of the mill, isn't this what everyone feels kind of thing. This really demonstrates that feeling tired isn't always normal.

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  29. I hate you are having to go through this but it will be worth it if you feel better. I don't like anyone feeling bad, especially people I like! :) It sucks being sick. They tested me for low iron a while back but they are going to do it again because they think I skewed the results because I wasn't thinking and took my iron supplement right up until the appointment - hello! I am also taking B12 supplements since people with fibro have low B12, but I've been told the B12 shots work better so I'm gonna ask about that, too. I hope you feel better with these treatments, Andi.

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  30. I'm so sorry to hear you're not well. Shame on the PA for not informing you of the risks. Anemia is very serious but I think people don't realize because it's not spoken about enough. Hang in there and get well soon.

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  31. Damn, Andi! I didn't realize it was this bad. I mean, I know transfusions are never a good thing, but I guess I never thought about what the long-term consequences would be or what you have been suffering to get you to that point. I hope you DO feel better next week during round three ant that you can get this under control once and for all!

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  32. That sounds pretty rough. Thank you for sharing. I really hope the infusions are working and that you're feeling better.

    This is what my old GP thought I had when I told her I was tired all the time and that I'm vegetarian. She was so convinced she repeated the blood test several times before believing iron wasn't my problem and she should look for something else. (Turned out I have lupus.)

    Definitely agree with other commenters above that we should all pay attention to our bodies and more readily see a doctor when we feel out of sorts.

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  33. Ugh! I hope that these infusions really help you. I developed anemia when I was pregnant with my daughter. As far as I know, I haven't had any issues since (and I have frequent blood tests for other things). I guess my exhaustion must be coming from somewhere else.

    I will be thinking about you and hope you will keep us posted on how you are feeling.

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  34. I am right there, I am going to see a Hematologist soon, my Dr said 3 months of intensive iron intake and injections are not raising my Iron, I can't even ride my bike because I get dizzy quickly and now it has made him put me on TDI at work for 3 months. People do not realize how bad it can get really quick, my hair even has stopped growing. It has not grown in a year. Thank You for sharing

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  35. I am right there, I am going to see a Hematologist soon, my Dr said 3 months of intensive iron intake and injections are not raising my Iron, I can't even ride my bike because I get dizzy quickly and now it has made him put me on TDI at work for 3 months. People do not realize how bad it can get really quick, my hair even has stopped growing. It has not grown in a year. Thank You for sharing

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