Friday, January 11, 2008

Low Hemoglobin, Anemia, and Lupus

As with many other people with Lupus, my hemoglobin has always been a problem. Lupus with chronic kidney failure doesn't help either. While anemia has always been present in my earlier Lupus days, it has never been as stubborn as it has been for the past few years. In the past, I was able to inject myself in arm with EPO and I was able to keep my hemoglobin under control. After being on Epo for a while, my doctor switched me to Eprex, which is similar, but apparently it's supposed to be better. That worked well for me too. Now my body seems to be really resistant to these conventional treatments.

My blood levels are good and I seem to have a lot of iron IN my blood, but my body doesn't seem to be ultilizing it properly. I've had many tests to try and figure out why my hemoglobin keeps dropping and dropping. One hematologist even told me that I had "iron overload" in my blood. So yes, there's lots of iron in my blood but why doesn't my body seem to be using it properly? The only thing that seems to bring it up for a while is getting a blood transfusion.

I've had all of the normal questions, such as doctors asking me if I'm bleeding from anywhere, etc, and I'm not.

I've noticed that hemoglobin levels are expressed differently numerically in Canada than they are in the United states.
In Canada, normal hemoglobin levels or counts are:
140 g/L to 180 g/L for men
120 g/L to 160 g/L for women

In the United States, normal hemoglobin levels or counts are:
13.5 g/dl to 16.5 g/dl for men
12.1 g/dl to 15.1 g/dl for women


In Canada, we measure hemoglobin in grams per Litre, whereas in the United States, it's measured in grams per decilitre. 1 litre = 10 decilitres, so I guess in order to figure it out using Canada's method of measurement, you'd take your hemoglobin (let's say its 10 g/dl) and you move the decimal point over once to the right (therefore giving you 100 g/L), and vice versa if you're trying to change the American method of measurement to Canada's method of measurement.

Even based on that conversion, acceptable or "normal" levels of hemoglobin in Canada and the United States are different. Normal for a woman in the U.S. is 12.1 g/dl to 15.1 g/dl (or 121 g/L to 151 g/L in Canada), whereas in Canada, 12.0 g/dl to 165 g/dl (120 g/L to 165 g/L) is considered acceptable. It's not THAT much of a difference I guess, but it is different.

My hemoglobin as of yesterday is 75 g/L, or 7.5 g/dl. Pretty low when you look at what's supposed to be normal. The lowest I've ever been that I can remember is 55 g/L (5.5 g/dl). Less than half of what is supposed to be acceptable!

Sometimes my doctors ask me how I keep from passing out and stuff. The only answer I can give is the fact that I've gotten "used to being tired all the time". If I acted how I felt 24/7, then I'd probably be in bed ALL day long. I'll admit, I do relax when I really feel like I need it, but at the same time, like I've said time and time again, I cannot and will not let Lupus control my entire life!

It is, however, getting to a point where I'm really tired all the time almost. I'm guessing another blood transfusion will be in the books for me in the next month or so.

3 thought(s):

butterfly girl said...

Hi,

I'm 27 and have also been battling Lupus for 11 years. Recently, my kidneys have begun to fail and I've had a number of other really negative flare symptoms like discoid lupus on my scalp.

I just wanted you to know that your blog is really inspiring and I'm so glad that someone out there is experiencing similar things as me in the same thoughtful manner.

Often, doctors look at me as if I'm crazy for living my life in the way that I do - working full time, refusing to give in, etc. etc. But, like you, I've "gotten used to" the pain, fatigue, low hemoglobin count, low kidney function.

I just wanted to let you know that I'm out there following your story . You inspire me with your honesty and realness. Thank you!

Anonymous said...

Wow - you are just what I needed. I am 34, and until now the youngest that I know of that has had much complications with Lupus. I stumbled upon your blog in search of answers for my father, who is currently having difficulties with his hemoglobin and he doesn't understand most of what the doctors tell him. We live in Arkansas, and He wants me to find a better/more knowledgeable doctor or hospital that might know more about this struggle than the one's that we are dealing with....
Any suggestions? my e-mail is her1toy@yahoo.com
Thanks - and God be with you!!

Anonymous said...

I have been looking into lupus.

In 1995 there was a study done using zileuton for lupus which seemed to have good results. the drug was approved for asthma. people with lupus have elevated leukotriene B4. I think that is why they have high rates of atherosclerois. Zileuton inhibits leukotriene B4. Zileuton is also a metabolite of Hydroxyurea which increases fetal hemoglobin. this leads me to believe it may help Lupus patients with 2 methods of action. I can't believe it isn't being studied currently in this disease.

 
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