Chronic Rants

I was really nervous at today’s appointment. I followed the doctor’s instructions, but did it work? What if it didn’t? What if my levels went up but not enough? The numbers ran through my head: 100 or more would be great! 70 would be ok, I guess. But what if it was only 50? What if it was lower? But first, let me give you a little context.

I’ve had low ferritin (storage iron) levels for as long as I can remember. I’ve been going through my old medical records, and the other day I found a low test from 10 years ago. I tried oral supplements, but they bothered my stomach. I tried different pills, but they didn’t work either. I tried eating more red meat, but that didn’t work. Doctors have said I should address it, but no one has sent me to the right specialist.

I’m anxious to move on to a new treatment for what I consider to be my biggest source of problems right now, which is my hypothyroid. The thing is, from what I’ve read, the hypothyroid treatments just won’t work well enough, and they could even cause problems, if my ferritin is too low. So I had to fix it.

The hematologist suggested I get iron infusions. Instead of taking pills of 30mg or so of iron, I’d get 2 infusions of over 500mg each. That’s a lot of iron! I figured I better try it, since nothing else had worked. As instructed I got the first infusion, waited a week, then got the second one, then waited 4-6 weeks to retest. Waiting was brutal, but I had no choice.

The doctor said that many patients begin to have more energy within a few days, and certainly within a few weeks, after the second infusion. Someone I know who did this said the same thing. She was excited for me that I’d feel so much better. But I didn’t. I felt nothing. I felt the same. So I worried that it didn’t work. And I kept worrying, because I had no way of knowing. Until today.

The range is 13-150 for women (though my doctor thinks this range is off, but that’s a discussion for another day.) For a woman getting her period, it should be around 70. For a woman with inflammatory issues, which I clearly have, it should be over 100. Before the infusions, my tests were anywhere from 7 to 26. The last was 22. Obviously 22 was not good.

And that’s how I ended up at the doctor’s office today, very nervous about my latest test results. Thankfully he had a cancellation, so I was able to worry for 9 fewer days than I’d originally planned. I sat in his office, waiting for the numbers to come up on his computer screen, thinking about all of the possibilities. Until today, I hadn’t realized how pessimistic I really was. The truth is, after all these years of illness and failed treatments, I guess I now expect treatments to fail. After all, that’s usually what happens. So when he told me the result, I was speechless: over 600! Wow! Even the doctor was shocked. He had said this could happen, but it’s very rare, and given my background he really didn’t expect it.

I’m a little worried about that high number, but the doctor assures me that my body will get rid of the extra ferritin on its own. Still, I’ll do my own research because I’ve learned over the years not to blindly trust doctors with my health. But still! Wow!

I think that this success has done three things for me:

1. It has fixed my ferritin problem, at least for now (I may need another infusion in the future.)
2. It has allowed me to move forward with my hypothyroid treatments.
3. It has assured me that standard, prescribed treatments can work for me.

It will take a long, long time for that last one to sink in, but I hope it does. This is so huge! For the first time in a long time, a treatment worked. And maybe, just maybe, it can help me regain my health.

This entry was posted on Tuesday, September 24th, 2013 at 8:24 pm and is filed under Educating, Expectations, Fatigue, Medication, Milestones, Raves, Symptoms, Unpredictable. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.