To Tell or Not To Tell...

When I first got diagnosed with lupus, there was the question of whether or not to share the information with my co-workers.  I probably didn't think through it as much as I should have, but since I was out of work for 2 weeks, they were concerned about me, and I decided to tell them about my diagnosis.  Part of my decision was because I knew I'd have to take additional time off for frequent doctor visits and in case I started flaring.  I've only shared the information with the 6 others in my immediate work group, and I'm very lucky that they've been very understanding.  It turns out that 1 of the 6 also has lupus, so we're able to relate on some level.  The culture of my organization is also one that puts a high emphasis on personal well-being and family.  I'm also very lucky to work in a flexible work environment which allows me to work flex hours and work from home if needed.

I know that the decision to share this kind of information with your co-workers is a very personal one and can depend on a number of factors.  I know other lupies have not been as lucky as I have been.  Often times others do not understand lupus, and because it is a disease in which you don't LOOK sick, many times people don't realize when you are in pain or fatigued.  I'll admit that before I experienced fatigue, I didn't understand it and how it is different than just being tired or lazy.  Sometimes co-workers can resent that you need to take so much time off from work or that you can't function at 100% due to the lupus fog.

I don't want lupus to be an excuse for why I can't do things, but I guess I'm hoping it will serve as some kind of explanation as to why I may need to take it slower sometimes...and I think that is something that everyone should do, lupus or not.

- a little lupie -

Anemia Blood Tests

I got a copy of my blood test results in the mail today, so I have a little more detail on what tests Rheumy ran.  Once again, I had to do some research to understand what each of these tests were for and how to interpret the results.  I have found labtestsonline.org to be a great source of information.  They do a great job of explaining why a certain lab test is done, the background behind how the body functions, and what the results mean.  I gave a brief overview below, but you can click on the links to get a lot more detailed information.


Haptoglobin

Haptoglobin testing is used primarily to help detect and evaluate hemolytic anemia and to distinguish it from anemia due to other causes; however, it cannot be used to diagnose the cause of the hemolysis.

Hemolytic Anemia occurs when the red blood cells (RBC) are destroyed by the body prematurely.  The average RBC lives in the blood for about 4 months.  With Hemolytic Anemia, this can be shortened to just a few days.  The bone marrow is not able to produce new RBCs quickly enough to replace those that have been destroyed, leading to a decreased number of RBCs in the blood, which in turn leads to a diminished capacity to supply oxygen to tissues throughout the body.  This type of condition can be inherited (e.g. Sickle Cell Anemia) or acquired (possibly as a result of an autoimmune disease, such as lupus).

When haptoglobin levels are decreased, along with an increased reticulocyte count and a decreased RBC count, hemoglobin, and hematocrit, then it is likely that you have some degree of hemolytic anemia.

My haptoglobin levels were in the normal range, so I likely do not have hemolytic anemia.



Iron/TIBC/Ferritin

This set of tests is often ordered to differentiate between different types of anemia (a condition that occurs when the level of Red Blood Cells (RBC) and/or Hemoglobin in the blood are decreased).

The Serum Iron test measures the amount of iron in the blood.  The Total Iron Binding Capacity (TIBC) test is used to assess your body's ability to transport iron in the blood.  These two tests allow the transferrin Saturation to be calculated.  Transferrin Saturation reflects the amount of iron being transported in the blood and its capacity to carry more.  The Ferritin test is used to determine your body's total iron storage capacity.

A summary of the changes in iron tests seen in various diseases of iron status is shown in the table below.

Disease	Iron	TIBC/Transferrin	UIBC	%Transferrin Saturation	Ferritin
Iron Deficiency	Low	High	High	Low	Low
Hemochromatosis	High	Low	Low	High	High
Chronic Illness	Low	Low	Low/Normal	Low	Normal/High
Hemolytic Anemia	High	Normal/Low	Low/Normal	High	High
Sideroblastic Anemia	Normal/High	Normal/Low	Low/Normal	High	High
Iron Poisoning	High	Normal	Low	High	Normal

Based on my results, rheumy thinks it may be Anemia due to Chronic Illness.

- a little lupie -

Hemey

When I last saw Rheumy, my blood count was not improving, so he wanted to make sure that the lupus was not attacking the red blood cells.  He ran a few more tests and just called to say that the results came back okay.  He thinks it may just be anemia of chronic disease, meaning that the lupus is affecting my body's ability to produce red blood cells.  When my lupus symptoms improve, my anemia should improve.  To be sure, he is setting me up with a hematologist (which I will nickname "Hemey"). 

- a little lupie -

Another Rheumy Day

Went to see Rheumy today.  My white blood cell count is back to the normal range, so it looks like the azathioprine is helping.  My red blood cell count, however, is still low.  Since my other lupus symptoms seem to be getting better (still no joint pain!), Rheumy is going to run some other blood tests to see if my anemia could be because of something other than lupus.  I remember being told I was slightly anemic when I first got diagnosed with hypothyroidism about ten years ago, so there's a good chance it may be due to something else.  We just want to make sure it is not the lupus attacking my red blood cells.  We should get the blood test results back around Wednesday, then we'll see if I need to go see a hematologist.

I also mentioned to Rheumy that when I stand up after sitting or laying down for a while, I get lightheaded and can't see for a couple seconds.  It is something I have always experienced occasionally, but I have noticed it a lot more recently.  Rheumy said that when you are laying down or sitting, your blood pressure is lower because your body doesn't have to fight as much gravity.  When you stand up, the nerves in your body help to raise your blood pressure so that it can get the blood up to your brain.  With lupus, sometimes these nerves don't work right.  We will see what my blood test results are, and see a hematologist if necessary.  If everything is okay and I am still experiencing this, I may need to see a neurologist.

Other than that, he said I am doing well.  We're dropping my prednisone down to 1 mg and I don't have to go back to see him for six whole weeks!  Looks like I graduated to the next level!  :)

- a little lupie -