I found out I was anemic in January when I went for a workup at the GI doc's for unexplained changes in bowel habits.....tons of diarrhea and tons of frequency. I also have something called ankylosing spondylitis which is a form of inflammatory arthritis. My GI did a colonoscopy to check for Crohn's or ulcerative colitis. He did find colitis, but believed it was due to the prep.

I continued to have some bowel problems although they normalized over time in February. I did return to my PCP a couple of times because I continued to have nasty stomach pains. My GI also did an EGD (scope down into the stomach and into the duodenum) and capsule endoscopy which is a camera that travels through the small intestine. Nothing was found. IBD is often found when one has AS.

Since my iron level was quite low last month, I was put on iron which greatly upset my stomach. I stopped taking the pills; however, I started having more severe problems-----went up three flights of stairs two Fridays ago, was huffing and puffing by the time I got to the top, and couldn't talk for two minutes until I could catch my breath. My legs hurt and I am extra tired. I've probably had three naps since I got up this morning. Shopping at Wal-Mart in a leisurely pace tired me out too and I only went to pick up what I need.

My ferritin level was less than 1 last week. :eek: I had bloodwork done at the rheumatologists on Monday and he faxed the results right over to my PCP whom he knew I was seeing this week.
RBC 3.11 L
HGB 7.4 PL
HCT 24.0 PL
MCV 77.5 L
MCH 24.0 L
RDW 18.0 H
PLT 529 H
MPV 6.8 L
Ferritin <1
From all I've been able to gather, this is a microcytic anemia consistent with iron-deficient anemia. The platelets rise as the RBC's go down.

While I have had a small non-healing bloody nose since February. I don't get big honking bleeds. Sometimes it hurts like crazy. However, I still appear to be bleeding from somewhere since the anemia appeared befor then????

My PCP called me Tuesday and sent me to the hospital obstensibly to get a transfusion. The labs had come back critical low on the Hgb/Hct.

The ER decided that I didn't need to get the transfusion since I didn't have angina or heart disease. Although they talked to a doctor in the office, they did not speak directly with my doctor, which ticked me off.

So, Friday, I saw my PCP who was flabbergasted about the lack of a transfusion. He's ordering at least two units of blood for Tuesday. I have to go on Monday for the type and crossmatch. He said that if they are dragging their feet about getting this transfusion done, he'll be admitting me. :eek: :rolleyes:

So, what's a blood transfusion like? What's the prep before? Do they use a regular vein or the big one in the elbow crease? Am I going to be hooked up to the blood pressure cuff all the time? Will I feel better right away? What else are they going to do if I can't get my iron levels, Hct/Hgb back up?

I know they've made the blood collection process better, so I'm not worried about that so much, but I am scared. Thanks for reading through this long note. I appreciate it!

Elaine

Elaine,

I can't answer much for you but I did want you to know that one of my doctors has ankylosing spond. as you do and he gets anemia from it. It is call "anemia from chronic disease." I'm not sure how this is treated but I do that it is caused by the disease. You may not be losing blood at all, but maybe your RBCs are just being destroyed. He told me that he had to end up going to a hematologist to get it properly diagnosed as his rheumy doc and general doc were not "up" on that.

Christine,
My PCP mentioned this as a possibility. I guess the first thing he's going to do is try to raise the Hgb/Hct and then go from there. I don't know if we even have a hematologist around here. I live in a fairly small town although I'm about halfway between Boston, MA, and Portland, ME.

Thank you!!! I've been pretty stressed out since Friday. There is something to knowing too much sometimes. ;)

Elaine

HI Elaine!
Your numbers resemble mine, although I do not have the arthritis, I just do not absorb oral iron or b12. They are giving me iron infusions. I just had my first one on Friday, it was a piece of cake, I went into a little room at the outpatient services, they started an IV, gave me a small test dose to make sure there was not a reaction, then gave me the rest, tok out the iv, and I was done. it took me about 6 hours with the type of infusion I had, next time will be shorter, as they will not have to do the test dose. When I had my blood transfusion, I was given the blood through the IV as well, but I was bleeding internally at the time, so I cannot tell you for sure what your protocol will be.
I hope you get to feeling better soon, there is a lot of support here! :wave:

Hi Elaine - I can sympathize completely - I was in the same situation several weeks ago and needed a blood transfusion and was very frightened about it. Let me copy in some details from one of my other posts...
You go the day before to give a sample so that they can type and cross match it, and they also mix some of your blood with the donor blood to check for any allergic reaction, to make sure your blood won't start creating antibodies against the donor blood. When you get there (typically outpatient at the hospital in the chemotherapy area) they will give you tylenol and benadryl (oral), check your vitals and then get the IV in and then with each unit they will run it on a slow drip for 15 minutes, check your vitals again and ask how you are, and then speed it up a bit. If you get more than one unit (I had two, and I am guessing you would end up with at least that as well) they will give you a bag of lasix in between due to the volume of blood they are pushing (so get ready to head to the bathroom with your IV pole often!), and then they repeat the process of the 15 minutes and then the remainder of the second unit. Each unit takes upwards of 3 hours to complete, so with 2 or more units, you can see that it quickly becomes and all day process. I was there at 9:30 AM and I left just short of 5 PM. They did have to stop mine for a bit because I did have a very mild reaction to the second unit with some hives (literally only a handful) but some extra benadryl took care of that and I felt better walking out of there then when I walked in - very noticable difference. I can tell you I was quite scared going in, but knew I needed to - and it worked out great. When I went in my HGB was 7.8 and my check up a week later it was 9.5.
The immediate impact was that I had been winded just walking into the hospital that morning, but when I walked out to my car that night I wasn't out of breath - and it has continued to increase in terms of how I have been feeling, although I have had a slight set back the last few days, but it had nothing to do with the blood transfusion - I am now a firm believer that by the time you get to that number below 8 there is nothing more critical - and nothing that so quickly helps you feel better.
As for the ER - I am totally in agreement with your PCP - it is nuts they didn't transfuse you right then and there. With the IV - it is nothing unusual, just a standard line. They will check your vitals regularly, but I didn't have to stay hooked up to the BP cuff.
Let us know how it goes!

AmieSue,

Thanks for the details. In fact, I'm going to read them again after I post this. :) I am nervous, but okay. I want to be able to do things with my kids and work without clock-watching because I'm so tired. I'm hoping we find a cause for the anemia. I see the GI doc again tomorrow, so we'll see.

My first time to post. Will just began with last Aug. w/my reg. 4 mo. check-up with the hematologist. He said I had lost a pint of blood. Began 4 iron drips (one a wk). Couldn't believe how bad I began to feel, especially my heart. I couldn't sleep at night & thought my heart was going to beat out of my chest. I told the Dr. & without even checking told me there was nothing wrong w/my heart. My husband was very ill at the time, so just tried to ignore the whole thing.

As of now the hematologist said my anemia is gone & my CBC seems to be great w/the B12 over the top, BUT I cannot say how bad I feel. Still can't sleep, my heart still thumps (not as much), I always feel hot, except for my hands & feet, I have the burning tongue w/awful taste in mouth, the fatigue is undescribable. There are times I just set & cry because I don't know where to turn. Any suggestions as to what I try now! I am a 66 year old female, feel 120. Thanks for listening.

As of now the hematologist said my anemia is gone & my CBC seems to be great w/the B12 over the top, BUT I cannot say how bad I feel. Still can't sleep, my heart still thumps (not as much), I always feel hot, except for my hands & feet, I have the burning tongue w/awful taste in mouth, the fatigue is undescribable. There are times I just set & cry because I don't know where to turn. Any suggestions as to what I try now! I am a 66 year old female, feel 120. Thanks for listening.

It sounds as though you have a b12 deficiency. I realise you said it was high. I point this out, since some can have high serum b12 readings through oral supplementation, whereas in some case, a IM shot is really the only way some people's bodies can utilize the b12.

If you have been getting shots, then I don't have any other suggestions at the moment. If you haven't, ask for them, can't hurt.

Also, a newbie usually gets more replies if they post a new thread with a really catchy description of the problem:)

Finally, what did the hematolologist say was the cause of your anemia? Did he give you a diagnosis?