Last week I was diagnosed with iron deficiency anemia. I found out that my ferritin levels were very low (ferritin is a protein that helps your body store iron – thus this low level means that my body has very depleted iron stores). Most people think that when you’re anemic you just feel a nagging tiredness. I am here to tell you that in many people it is much more than that! I had been feeling increasingly horrible over the past couple of months. Symptoms: no energy, extreme fatigue, constant lightheadedness, frequent dizziness (which last week developed into constant dizziness even while lying down), blurred vision, restless leg syndrome (horrible!), numbness, heart palpitations, shortness of breath, and extreme weakness. I only found this out because I got an e-mail on the computer telling me I had an abnormal laboratory result. With Kaiser Permanente, you can make an account online and view your lab results yourself. Once I saw my ferritin results last Wednesday (November 21st), I immediately called the doctor’s office to try to talk to someone. They told me my regular doctor was out of town already for Thanksgiving and she wouldn’t be back until the following Monday. So I left a message for the doctor on call to call me back. I was feeling so terrible, I felt I needed to speak to someone right away to see if I was okay and what I should do. No one called me back. I ended up calling three times that day before a nurse finally called me back. She didn’t really know what she was talking about so I demanded to speak to a doctor. Then I had to wait for another call back from a doctor. I never actually got to speak to doctor that day. The same nurse just called me back with a message from the doctor telling me I had iron deficiency anemia and that I should take iron supplements and follow-up with my regular doctor the next week.
I was frustrated but went out to buy iron supplements that day (no one even told me how many milligrams to take – I have a Bachelors degree in biology with a focus in biochemistry so I used my own knowledge to figure everything out but it’s nice to have an expert to converse with for goodness sake!).
I can’t even explain to you guys how horrible I felt. I could not stop moving my legs, I was so anxious and jittery I felt like I was going crazy. The next day, on Thanksgiving, we had a flight out to Seattle to spend the holiday with B’s family. Something in me really knew I shouldn’t travel but I didn’t want to upset my husband. At the airport it was difficult for me to walk onto the plane but I managed. I told myself I would feel better in a couple of days taking iron supplements. At this point I still felt semi-okay. I didn’t feel dizzy if I was sitting down and if I just constantly rested I didn’t feel so weak.
We got to Seattle and I told everyone I had anemia so I would have to rest a lot. I laid on the couch all day and then went to sit up at the table to eat the Thanksgiving meal. I felt REALLY badly that I couldn’t help my mother-in-law with any of the preparations. Normally I would just push myself to help even if I was feeling under the weather, but it’s a testament to how weak I was that I literally could not help even if I tried. I had to go lay down immediately after Thanksgiving dinner because it was difficult for me to even sit up in a chair. I didn’t have much of an appetite but I was still forcing myself to eat three meals a day (with lots of meat in them!) so I didn’t get weaker. The next day, on Friday, I was even worse. I was so tired I couldn’t even talk. That night I finally asked my husband to take me to the hospital because I was having chest pain and felt like I couldn’t breathe. I could barely even get up to go to the bathroom. On the way the hospital, I was lying down on the back seat of the car. When we arrived, I sat up and got so dizzy I just fell over and face planted on to the car seat. This freaked everybody out and someone ran in to get me a wheelchair.
In the end, I’m okay. They never really figured out anything more at the hospital. They ran a ton of tests in the ER and then actually decided to admit me to the regular hospital where I spent TWO nights (which is pretty rare in my experience!). I don’t regret going because I think I literally needed to be on complete bed rest and that’s what I got there.
The doctor I had when I was in inpatient was pretty concerned about me. She didn’t think the anemia was so severe that it would cause this intense of symptoms. For the FIFTH time in my life, she mentioned that she wanted me to follow up with a neurologist at home to evaluate me for MS. Why did she say this? Because this is the third or fourth episode I have had like this this year (although this one was by far the most severe) that included the same strange eye symptoms (eye pain and vision changes) accompanied by dizziness, severe fatigue, confusion, and numbness in my legs. I was also having trouble talking. Like I could think the words but they wouldn’t come out. I have had more minor episodes of things like this for years, including one episode with just my eyes in college when I was much healthier in all other respects than I am now.
It’s my suspicion that I have iron deficiency anemia AND some kind of neurological issue. I had actually already had a follow-up neurology appointment yesterday but I literally couldn’t go because I would have had to take the bus there for over an hour and I felt too weak to do it. So I rescheduled… And of course couldn’t get an appointment until the end of January, but that’s okay.
My primary care doctor keeps focusing over and over on my anxiety. I’m telling you, I have had anxiety my whole life. I know a lot about anxiety and I truly believe it has a lot of psychosomatic symptoms associated with it. However, anxiety did NOT cause me to get so weak like that. I used all of my coping techniques, I took Klonopin (a tranquilizer in the Valium class (benzodiazepine class)), and I still had these symptoms 24/7 for weeks.
So my plan is this, right now I want to see how I can much I can improve with iron supplementation and overhauling my diet. I know my diet has been terrible for a long time. I was actually starting to improve on it before this happened, although it obviously wasn’t enough. In a way I’m kind of glad I had to push my neurology appointment back so I can see how much better I feel by then with diet and iron pills.
I know I’ve gotten this because of a) not getting enough iron and protein in my diet, and b) I have a copper IUD for birth control and although I otherwise LOVE it, it does make your periods heavier, which leads to more iron loss. It typically takes 2-3 months to rebuild your iron stores. So it could be a long time before I start feeling totally better from that.
Since I started taking iron pills, a few symptoms have gone away, namely the restless legs and the pain in my legs. I was in the hospital from Friday evening to Sunday evening. We flew home on Monday morning. I was afraid I wouldn’t be able to make it home but the hospital doctor said I could fly if I felt okay. I just took wheelchairs in the airport and I made it. Since Tuesday, I have slowly started to feel better to the point where I am still lightheaded and in a brain fog (I think the worst part of this), but I am not as weak or tired and the dizziness has gone away. I can get around my house and take a shower standing up now, etc.
Per my doctor’s advice on Tuesday, she said to take two 65 mg pills of ferrous sulfate (iron) a day. I looked back at lab results I had done last February, and my ferritin level was at the low end of normal. So it’s probably been steadily decreasing ever since. I had gone to the Dr. in February with the same symptoms, although less severe, and to me, this still doesn’t explain why it has relapsed and remitted in between, but whatever. Maybe that just varied with how well I was taking care of myself. I’ve been doing a lot of research online, and the literature + real people’ s testimonials show that all doctors don’t always take ferritin all that seriously, but many, many people experience the same symptoms as I do.
So here’s my game plan:
- Take two iron pills per day
- Take a vitamin C supplement every day with the iron (please read my article here on the differences between animal-based iron and plant-based iron and on what different vitamins and minerals affect iron absorption rates – vitamin C increases iron absorption)
- Take a vitamin D supplement every day (when I saw the neurologist in August he ordered a vitamin D blood test and mine was at the low end of normal; a few years ago it was also at the low end of normal and my doctor told me to take vitamin D supplements before it became a deficiency so I’m going to employ that advice now)
- Take a B-complex vitamin supplement every day (in August, the neurologist also told me to take B vitamins for my nerve inflammation, which I never did, but now that I’m getting serious about my health I’m going to!)
- Eat 3 balanced meals per day (I have been doing so much better at this!)
- Increase my intake of iron-containing foods and protein (I’m actually excited to eat healthier and to try a bunch of new foods!)
- Eat at least one full serving of meat a day and at least one full cup of green leafy vegetables
- I am supposed to start taking Celexa for my anxiety, which I am at my wits end with, so even though I really don’t want to, I’m going to try it to see if that helps with the anxiety or anything else. I have taken it before, years ago. I took it today and it’s making me feel jittery which I don’t like. If I try and really feel like I can’t do it, I am going to do numbers 1-7 for a full month and see if I feel better before I add in more side effects. Either way, the game plan with this is to love myself and rest as I need!
I haven’t been able to go swimming for over a week. I’m going to try on Saturday but if I need to take one more week off it’s okay!
I have to remember that I just have to be patient with all of this because it will be a while before I feel better. I am almost glad this happened to me because it has solidified my motivation to take care of my health.
Has anyone else ever had anemia? What was your experience with it?
How was everyone else’s Thanksgiving? I’m excited for Christmas! I really hope I feel a lot better by then because we are going to Denver to see my family.