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How I Solved My Chronic Iron Deficiency Anemia and Stopped Needing Infusions

Updated on April 11, 2017
Cari Kay 11 profile image

Kay struggled with chronic iron deficiency anemia for nearly 14 years. Today she is no longer anemic.

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A Short History

If you've read any of my other articles on this topic, you'll know that iron deficiency anemia has been a huge struggle in my life. Years of iron pills and trying to figure out how to keep iron in my body took its toll and culminated in a trip to the ER—at which point I began receiving iron infusions at the local cancer center.

Iron infusions worked well for me, in the sense that it felt great having energy again. On the other hand, they often take at least a month before I start to notice a difference, and they have their own side effects that leave me feeling ill for days or even weeks after each infusion. I can look forward to a brief time of feeling "normal," and then exhaustion sets in again. And, once exhaustion sets in, I know it is time for another infusion. I just wanted off this roller coaster!

The Month Before My Infusions: Symptoms

I can always tell when my blood levels are low. When my ferritin levels drop below 20, I know even before the bloodwork results come in.

Just a note, ferritin is what binds the iron. You may have normal hemoglobin but if you have low ferritin, the next step is iron deficiency anemia. If you are exhausted and getting checked, please ask to have your ferritin checked as well.

These are the symptoms I experience when my ferritin levels are dropping (this drop is usually followed by a drop in my hemoglobin levels, as well):

  • Complete exhaustion! Even before hemoglobin drops, if your ferritin is dropping, you'll feel it.
  • Weakness.
  • Catching every little illness that comes around.
  • Heart palpitations if your hemoglobin is dropping, too.

The Month After My Infusions: Symptoms

My body does not like iron. The pills hurt my stomach and eventually the amount of pain they caused forced me to stop taking the supplements. The IVs also have caused me a host of problems. I've written other pages here on what different types of iron do to me. You can read those pages for more details.

Generally, here are my symptoms for up to a month after my iron infusions:

  • Flu-like symptoms
  • Vomiting
  • Even more exhausted than before the infusion
  • sometimes a slight rash
  • Achiness in my IV arm
  • Headaches

Although I didn't get these symptoms every time, it was rare to have an infusion without at least a couple of these symptoms.

Have you had a hysterectomy because of Iron Deficiency Anemia?

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So Now You See Why I Wanted To Get Serious

You can see above a small snapshot on why I really was getting desperate to end my infusions and end my anemia. With infusions on average every three months and sometime multiple infusions in a single month, I'd have only about a month of feeling normal before the cycle would start again. I was having on average, three to four 'normal' months a year. I couldn't go on this way.

My doctors kept saying that the majority of cases are because of a woman's cycle. I wasn't convinced that was my issue though. I'd stopped my period with pills and later slowed the bleeding way down with Lysteda. I still received my infusions on time. I had an ablation scheduled three different times but they were canceled each time. The first time because my period started and the doctor said it might now work, the second time due to an insurance error, and the third time due to an error at the doctor's office. I'd been told before I was not a good candidate and after the third time the procedure did not take place, I was done considering it.

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Should I Have a Hysterectomy?

A hysterectomy had been mentioned in the past but I never gave it serious consideration. It seemed drastic. However, my infusions were becoming more frequent and my cost per infusion went up from $30 each time to hundreds of dollars each time plus a $750 deductible. I finally decided to get serious and found a doctor who I was told was really good at hysterectomies.

I should say, the thought of a hysterectomy has always scared me a bit so you know I was serious!

I saw this doctor. I had barely scratched the surface of what I go through when she stopped me and said she didn't need to hear any more, I was definitely a candidate.

Looking back, I wish she had listened.. I had been so worried that insurance would not approve the surgery because of everything that happened with the scheduled ablations. The doctor and her office kept reassuring me that it wouldn't be declined. The day before the procedure, you guessed it, it was declined. I had been fasting so I was hungry plus I was so nervous about the surgery, and, once declined, I was so upset. The doctor (or the assistant) had a peer-to-peer with the insurance company but they weren't budging. I broke into tears when the nurse called to break it to me.

Long story short (or shorter than it could be), I wrote a four-page letter to the insurance company detailing my day-to-day life with iron deficiency anemia and detailed what the infusions do to me. Thirty days later, I received the letter: Surgery was approved!

No turning back. I was having a hysterectomy!

After My Hysterectomy

My hysterectomy itself is a long story. I'll share that for another time. I had the Da Vinci Robotic Hysterectomy. The doctor ended up leaving my ovaries and that was welcome news.

Two weeks later, I received the pathology report from my surgery. I had adenomysis (likely from my two c-sections), multiple small fibroids, and several small cysts (in fallopian tubes and on uterus). With all of that, I was really beginning to feel good that the hysterectomy would solve my anemia.

I was due for an infusion about a month after my surgery but, since I was healing, I put off going in for bloodwork. Although I had a host of other issues from surgery, that over-the-top anemic exhaustion was not one of them. Since I had had some bleeding after surgery and a really heavy period before surgery, I was really nervous to get my bloodwork results six weeks after surgery.

Results came back. My levels were normal! They were actually smack-dab in the normal range! That has never happened before!

I'll will check my levels again in a couple months but I have none of my symptoms. I really believe it is safe to say I am done with iron deficiency anemia!

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Adenomysis. Want to Learn More About the Condition That Caused My Anemia?

Are you considering a hysterectomy or have you had one? I'd love to hear from you.

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