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Hi, Keggen!

The good news is... you are not alone! I can completely sympathize as I share most of your symptoms, and I can tell you that there is hope! This post may be long, but I will do my best to help you based on my personal experience.

First off, I know what it feels like to be ignored by the doctors. I had to go to 8 or 9 before I finally got someone to take me seriously, which I'm sure is not exactly what you want to hear, but the plus side to that is that there IS a doctor out there to help you; you just have to find him or her.

My main symptom, the one that started me on this journey, was hair loss, which I am so, so glad that you don't have, judging from what you describe in your post. However, I did have some of the other symptoms that you describe since I was young, but like you said, I just thought I had to live with them because it was just how I was. They were getting worse, though, so as I searched for hair loss causes I came across iron deficiency/anemia, and the symptoms list was basically describing my life, so I made an appointment at the dermatologist expecting them to send me on my way with some iron supplements, and I would be fixed! That's not how it happened, as the doctor (also a PA, like yours) ran every test he could think of, and they all kept coming back "normal." Here is where I want to stress a point: "Normal" does not mean "optimal!" But we will get to that in one second. Please, bear with me.

I just knew that I had low iron, but they kept telling me I didn't. I finally ordered a copy of the results, and he had run an iron panel test but not ferritin, which is the one we needed. I asked him to do that one, and he did, but when they called with the results, they just said, "It's normal." I made them give me the actual number, which I notice you didn't include in your post, so if you do not have the number result, I would suggest getting it because it is important. Mine was 17, which is technically "normal" on the lab range, but another doctor explained to me that (from what I gathered), they took maybe a thousand people who were believed to have normal levels of iron, and the lowest person's results was the lower limit, and the highest person's result became the upper. Now, I'm not sure if that's exactly how it works, but it does make sense in light of how huge the ferritin scale is. Some people are able to have low ferritin levels and never feel the effects, but some of us are more prone to illness when our levels get low, even if it is "normal," and you may be that way, too.

So long story short, I petitioned doctor after doctor after doctor to take a look at my levels (which, if I remember correctly, looked similar to yours), but they just dismissed them. I started telling them my symptoms, but they dismissed them, too. I started wondering if I was imagining some of these because they seemed totally dumbfounded that these types of symptoms could even be caused be anemia. Eventually my PA, who is an angel and did the best he could until he exhausted all his options, referred me to a huge research hospital across the state, and even that doctor seemed a little skeptical, but he was more open and ordered a ton more tests. In the meantime, I was doing everything I could to up my iron on my own (eating everything iron-rich that I could find, etc.) and had another test. So to break it down: My ferritin started at 17. I fought it up to 21 over a year, and then it shot back down to 13 over the course of 3-4 weeks for no reason. This finally got the doctor's attention, and he was actually concerned because it is like my blood or body just won't hold the iron. Then my miracle happened: I got referred to a hematologist!

The hematologist was really the first one to really think all my symptoms were related and had no problem thinking they could be caused by iron deficiency/anemia. I took the highest dose of prescription iron twice a day for a month, or maybe a a little more, which he really thought would do the trick, but it hardly raised my levels at all, so he prescribed iron IV infusions, and I love him for it. I had two sessions, and my levels were 198 at last check! That is incredible. I go back in a couple of weeks to see if my body is holding it in place or not. If it is dropping, I will probably have more, and they will probably start looking for the cause, but for right now, I am enjoying my iron!

Sorry for the length of that, but I tell you my whole story to make a point that I had most of your symptoms, labs similar to yours, and they told me that it was nothing, BUT a year and a half later, it turns out that I was right, and "normal" isn't normal for me. You HAVE to be your own biggest advocate and fight for your diagnosis and treatment. That's probably the hardest part because you know you need help but can't find it. Try to get in with a hematologist. They may be your best bet. They were for me.

If you are still with me, I will talk about symptoms now! I agree that they are kind of bizarre. That's exactly how I describe them, too!

1. The lightheadedness is crazy. Mine is exactly like yours. Mine happens every time I stand up, almost without exception, even when I'm just sitting normally. My head pounds, and I feel like I will faint, and I can't see for a few seconds.

2. My blood pressure was also just a tad low. I haven't checked it since getting my levels up.

3. I, too, have those cognitive issues. Concentrating or studying is like torture some days. I just cannot pay attention. I have to ask people to repeat themselves, and I mess up my words a lot. I forget things now, also. Around the time my levels hit their lowest, I pulled into the garage and could not remember how to turn the car off! It was a bit alarming.

4. My lips are often chapped, but not in the same way you describe, but I hear that dry/cracked/scaly lips are common among anemia patients.

5. Coldness! Being cold was basically my trademark. I was that person wearing a jacket in 85 degree weather. My hands, feet, nose, etc. were always cold to the touch, and I also have one finger that is always colder. How funny!

6. Achiness in the bones is one of mine. It's hard for me to describe it to other people. All I can come up with is that "my bones hurt." Mine is mostly in my lower legs and ankles, but I do get it occasionally in my hands, wrists, and forearms. I have had it in my legs since I was a child, so it makes me wonder how long I have been anemic.

7. Finally... appetite. As my level got worse, so did my appetite. I still struggle with it most days. I really want to eat, but a few bites in I'm feeling ill. Then I get sick because I've hardly eaten. It's just a cycle. I lost 10 pounds in a month totally unintentionally because of the loss of appetite, but I try to keep eating because I'm already missing out on important vitamins!

I will gladly report that I am seeing improvement in my symptoms with my new levels. It will take a while before my body kicks back into gear with red blood cell production (I've read about 4 months), so it will be even better then. I even took part in a 5k a few weeks ago, which would have been unheard of a few months ago before my infusions. I suffered from terrible fatigue!

Your diet sounds great! I am by no means a health fanatic, and I do eat out and drink soda, but I don't consider myself to have a bad diet, especially not one to have caused these problems. From what I've learned, though, people with absorption problems can eat a healthy diet and still have some issues, so I'm wondering if that's what I'm facing myself.

So, I hope I didn't bore you and hope I helped a little, even if it's just to let you know that someone with similar issues is out there and is seeing the light at the end of the tunnel!

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