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Sherrill: Diffuse Systemic Scleroderma

New Zealand

My experience with anemia.

Sherrill KnaggsSince I became ill with diffuse scleroderma just over eight years ago, I have found that anemia is a quite complex subject!

The old "catch all" which some doctors use of putting it down to heavy periods just isn't good enough really. After all, I became anemic when I had scleroderma a few years, and I had been through the menopause by that time, so go figure! I am not saying that this cannot be the reason, but I think doctors should look a bit harder at other possibilities, particularly when dealing with patients who have other serious problems, like scleroderma.

My first experience with anemia saw my hemoglobin go down to about 9.0. I was told this was the anemia "of chronic disease", and of course in my case that meant scleroderma. A while later my kidneys failed, I went onto dialysis, and shortly after that my hemoglobin plummeted to 5.0! I was given a transfusion of three units of blood, and was okay for three weeks, when the same thing happened again! In all this happened a total of five times! With transfusions every three weeks I was starting to get rather tired of this. I was hospitalized for all sorts of tests, particularly endoscopies, and a colonoscopy, because they suspected bleeding from the gastrointestinal tract. But everything came back negative.

To cut a long story short, I was informed that the kidneys produce an hormone called erythropoietin which stimulates the bone marrow to produce red blood cells (hemoglobin). When the kidneys fail this usually stops happening too, so you need to be given this hormone by injection. Once I started receiving this, my hemoglobin stopped dropping so alarmingly, and after a few weeks it started climbing again to a good level of eventually around 12.0.

So I have been having these injections ever since, but now only need them about every three to four weeks, instead of twice weekly. However, that was not the end of the story.

The body needs good iron stores to draw on, and from which to make hemoglobin. This is where the ferritin story comes in. Ferritin is a protein which can store iron. Iron is stored in this form by the body until it is needed to make hemoglobin. So I was merrily making hemoglobin courtesy of the injections I was having, but I was running down my iron stores. Once they are depleted you won't manufacture hemoglobin, no matter how hard you try, with the result of iron deficiency anemia.

In my case I was given iron by intravenous (IV) infusion. This is a form of iron readily used by the body. Oral iron tablets are not easily absorbed, and I understand only about ten percent of the iron in them is absorbed. So if you are very low in iron stores you just can't swallow enough to make the deficit up. They're also very constipating, whereas the iron infusion is not.

I have just recently started becoming a bit anemic again, with my hemoglobin dropping to 10.8. So my dialysis nurse had iron study tests done on my blood which proved I needed more iron, and I am booked in for an infusion next Tuesday. It is just an out patient procedure, and takes about three hours. I usually find it very boring!

However, there's another catch here. My ferritin does not show a low level of iron stores, and has not done so since I first got scleroderma. In fact, some years before I was diagnosed it was found to be much too high!

This is not good either, and the doctor was puzzled as to the reason. I found later that this may have been the first sign of my approaching scleroderma, as a high ferritin level can frequently be a marker of inflammation. So for this reason my doctor disregards my ferritin level when he is determining whether or not I have an iron deficiency. He relies on iron study tests which test for the iron levels, iron binding capacity, and iron saturation.

My last tests for all these showed low levels, so this is the reason for my upcoming iron infusion. (Incidentally I won't bother you with my ferritin result, as the figures will be different because we have different measurement scales in New Zealand to the United States.)

Now, just to confuse the issue properly, a young doctor was asked about my recent blood tests, and because my ferritin was high he didn't think I needed iron. When my nurse told him it was an inflammation marker in my case, he ordered a CRP test, which can also show other forms of inflammation, particularly in the blood vessels. That came back as completely normal, so he didn't order any iron!

My nurse then asked another doctor who is a specialist in the field of renal medicine, as my own is on vacation. She didn't hesitate, and ordered the iron straight away.

It just shows how complex the subject can be, and how much experience is needed in interpreting results. Particularly in a somewhat complicated case like mine where I have not just kidney failure, but scleroderma, complicated by kidney failure, which was originally caused by the scleroderma.

This is not to suggest that anyone with anemia has scleroderma or kidney failure, because you would be having many more symptoms if you have either of those. However, I have used my own experiences to illustrate the complexities of anemia.

I am not conversant with the reasons for "chronic disease anemia", I just know that it often happens. If you have anemia and have questions about this, it may be a good idea to discuss this with your rheumatologist, who should know about anemia of chronic disease. Failing that, you could ask to see a hematologist (a specialist in blood disorders.)

I hope I haven't made this too confusing. If so, please don't hesitate to ask about anything I haven't made clear.

To Contact the Author

Email: No longer applicable.
Story posted 1-29-05 SLE

Sherrill was the ISN News Guide
and an ISN Story Artist
Anemia of Chronic Disease
Diffuse Systemic Scleroderma
ISN: Sherrill Knaggs
Renal (Kidney) Involvement
Sherrill: Diffuse Scleroderma
Go to Sherry: Fibromyalgia, Hypothyroidism and Raynaud's

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