Update- CBC Today and questions

Hello everyone!
Oh, how I've missed you all! Things are going great on my end. I just went in for my 6th month check up and the Rituxan is still holding strong! My number was 272! Nice and high! However....(ugh) my hema informed me that I am anemic, now. WTF?!? My hemoglobin was low (11.7) I usually hover around the mid to low 12s. So, naturally, I freaked out and started to bombard my hema with questions: "What's wrong with me?" "Is there something wrong?" etc. etc. You guys KNOW how I am. Anyways, she wants me to start taking iron supplements (great, those are so fun) and she said she was running an "iron study" on my blood and to call next week for results. WHAT DOES THAT MEAN?!?! She told me not to worry, but that my anemia is due to my monthly periods. She said that a lot of people are anemic, especially young girls. So, I guess my questions are....

1.) Is anyone else on here anemic?
2.) Anyone taking iron supplements?
3.) Should I be worried?
4.) Does anyone have valuable information about red blood cells/anemia etc?

Love you guys!
Natalie

Natalie:

Most of the reasons for anemia are easily treated. It could be due to low B-12, which is called Pernicious Anemia and all you have to do is take sublingual B-12. It could be due to low ferritin, in which case, you simply take iron. I have that problem, in fact, I have both problems, but neither one has affected my iron level yet. It was caught before it became a problem (tests revealed low B-12 and low ferritin). Or, it could just be simple anemia which is what your hemo said....common, ordinary anemia.

Worst case scenario - Evans Syndrome, but that is very unlikely.

She will probably run a B-12, ferritin, folic acid, and possibly a Coombs test. I wouldn't worry if I were you. You're just under the normal level, not seriously anemic.

I take iron supplements and do okay with them. Let me know what happens, okay?

Hi Natalie Good to "see" you again! When I first was diagnosed I was anemic too. Iron and Folic Acid fixed that. There were no side effects from either, except for the occasional need for a glass of prune juice! I wasn't worried about it, I don't think you need to be either!

Hey!

Thanks for your responses. Yes, I started taking SlowFE yesterday right after I left the drs. office. As I said, my levels weren't THAT low, but it still worries me. I'm like, "can't anything go right?" It made me start wondering again if something more serious is wrong with me. But, my platelets are still high, so I am so thankful for that! But, it is a chemically induced "highness" so who knows how long that will last. At the beginning of this whole ordeal, I originally had low hemoglobin and she had me start taking iron. The supplements quickly fixed the problem and she said I no longer had to take them. So, I stopped and that was about a year ago. So, now, back to square one. She told me that it was because of my period, but I found it odd that she was going to run all these other tests. So, naturally, I freaked out. I don't know if she was erring on the side of caution, or if it was protocol. I know how she is and she isn't going to tell me anything to freak me out unless she knows that it is very important and plausible. The main thing that worries me is that although my period did last a little longer, it wasn't bad at all. In fact, I just started birth control a month ago and my period was a walk in the park. And the oddest part is that the BC is called Loestrin FE...meaning that a large component of it is extra iron pills! So, after the 24 day pack, it provides 3 days of pure iron pills. So, of course I'm thinking, well then WHY on earth was my iron so low. I just wish I was normal and didn't have to deal with ANY of this. Carefree, like I use to be. I guess that is a thing of the past. I just keep telling myself that it could be worse, it could be much worse. She told me to call in a week for my results (how nerve wracking). As soon as I find out (deep breath) I'll let you know.

Natalie

Natalie - I haven't been around a lot but - is that a typo that you went for your sixth month check up? Did you have to do Rituxan again? I thought you were still doing good over a year out? Did I miss something?? I need to go back and read the boards again!

I haven't been in for a CBC in two months - I'm on the every-three-month-testing plan right now. Finished Rituxan in July and have been in the low normal range ever since.

It's weird though - I should be thoroughly enjoying this time - which I am - but because I had the nasty reaction to Rituxan and I know I will never be able to have it again, I keep on doing the month count - figuring that I will drop again when I hit the year mark. And I am just dreeeeeeeeeeeeeading it. My hair is finally growing back from the nasty shed I had when I got off the Prednisone and I really don't want to have to go back on it. I'm still carrying around the extra 20 pounds which don't seem to want to go away.

This condition sucks. Even when I'm doing okay - there's still the paranoia in the back of my mind.
I'm sure most folks can relate.

I didn't mean to make this post about me. I guess I needed to vent for a minute.
I'm sure your anemia will improve soon. I thought I had read that Rituxan can cause some minor anemia, but I could be wrong.
But wait - back to my original question. Did you have Rituxan again?

-Chelle

Hey Chelle,

No girl! My Rituxan is still holding strong. My last count this past Tuesday was 272...the highest it has been in a while. My post was about yet another problem that has cropped up....minor anemia. My hemoglobin was a tad low, so my doc has put me on iron supplements. You know how I am, I freaked out and got on here for support and questions! I go in every 6 months for a CBC. It will be 2 years in February since I was diagnosed with ITP and it will be 2 years of remission once March rolls around. That is when I started my first round of Rituxan. I hope and pray my Rituxan stays in my system for a long time and keeps those numbers high. Just when I'm going along fine and actually starting to get on with my life, something more shows up on my CBC. And just a tip, don't google anemia, so many unsettling things will come out of your google search! As for you, try to enjoy this time! I know it can be difficult, and you will always have that weird thought in the back of your head, but you have to keep calm and carry on, right? It's excellent that your numbers have stayed up this long. That is a good sign. And you never know when they may skyrocket. My numbers have jumped around the entire time I have been on Rituxan. I remember I went in for a CBC about a year ago and my numbers had dropped from 240 to 173. I was convinced that the ITP had won and that it was coming back. But, low and behold, my next CBC was 250 again! You just never know. As Gort once said...it's not really the fear of low numbers, it's the uncertainty of not knowing that gets to us. So, relax! You've been given this "time off" for a reason. You need to enjoy the holidays, eat lots of good food, and be with your family and friends. And remember, if for some off reason they do go down, you don't technically have to treat again until they are in the low, low numbers. You wouldn't treat if your number was 100, 70, 50, etc. At least I wouldn't. And remember, you can always come here for support! Have a fabulous holiday!!!!!!!
Lots of love,
Natalie

Ok,
So take it from someone who has low ferritin and has to constantly work at it, let me tell you, SloFe is not that great. Too constipating and ugh, stomach cramps. plus it was too slow to raise my levels.

I take Floradix. It's liquid iron and other vitamins. It took my hemoglobin from 7.0 to 10.0 in 6 weeks. That's huge for me. Nothing else worked. I have no side effects with Floradix. It tastes disgusting and it's expensive, but I mix it with juice and suck it down with a straw. It's worth it to me to feel better. Without it, I'm a mess.

Also I take B12 shots every two weeks and prescription folic acid. I also have hemolytic anemia which is the reason for my B12 problems.

Thanks Plopper for your input! That is definitely something I will consider. I haven't had any problems with SlowFE thus far. No stomach pains or gastrointestinal problems like constipation. I've taken SlowFE before when my hemoglobin was a tad low and it worked pretty quick in raising my numbers. I think I'm just going to stick with my hema's plan and take the SlowFE until my next appt. in March. I am also taking Super B Complex vitamins, so hopefully that will help. My number wasn't that low, it just needs a little boost. I was at 11.7 when I am normally around 12.2-13.0. The iron study she performed just showed that my hemoglobin was a tad low and that everything else was normal. So, SlowFE it is for now. If that doesn't work and my numbers don't rise by March, I will be looking into other options. Thanks for your advice, nonetheless!

Natalie