New MASAC Guidelines Document #296 on Iron Deficiency

What People With Bleeding Disorders Need to Know

There is important news for our community. MASAC (Medical and Scientific Advisory Council. It is the council of the National Bleeding Disorders Foundation (NBDF), created in 1954 to issue recommendations and advisories on treatment, research, and other general health concerns for the bleeding disorders community.) has released the first ever guidelines on checking for low iron in people with bleeding disorders. Until now, there were no recommendations for iron screening in this group. Here is what the guidelines say and what you can do.

Why iron matters for you

People with an inherited bleeding disorder have a higher risk of low iron because of blood loss from bleeding. When low iron is not treated, it can turn into iron deficiency anemia over time.

Low iron can cause many signs and symptoms. You may have some, all, or none. The guidelines list these: tiredness, trouble exercising, headache, dizziness, shortness of breath, fast or pounding heartbeat, passing out or nearly passing out, pale skin, pale lips and gums, dry skin or hair, hair loss, spoon shaped nails, a smooth or shiny tongue, cracked lips, restless legs, ringing in the ears, trouble sleeping, feeling cold or having chills, easy bruising, a low or cranky mood, trouble thinking clearly, craving ice, and craving things that are not food.

Who these guidelines are for

The guidelines say everyone with an inherited bleeding disorder should be screened, no matter their age, their sex, or how mild or severe the disorder is. This includes hemophilia A, hemophilia B, von Willebrand disease, rare factor deficiencies, inherited platelet disorders, hemophilia A and B carriers, hereditary hemorrhagic telangiectasia (HHT), and bleeding disorder of unknown cause.

The main rule: get checked every year

MASAC recommends that everyone with an inherited bleeding disorder get a blood test for low iron and anemia once a year. This is true for all ages, both sexes, and every level of severity.

Get checked more often during high risk times

MASAC says you should be screened more often, outside of your yearly check, during high risk times. These include:

During treatment for a severe or long bleeding episode. After a hospital stay for a bleed. When you have repeated breakthrough bleeds, especially from the mouth, nose, or gut. After a major surgery or a surgery with a lot of blood loss. During pregnancy and after birth. When a teen first starts having periods. When you have heavy periods, meaning bleeding longer than 7 days, soaking through a pad or tampon in less than 2 hours, or passing large clots. If you have had low iron or anemia before. If you have needed iron treatment before. If you have a stomach or gut condition that makes it hard to absorb iron. If your diet is low in iron. If you often use acid reducing medicines like proton pump inhibitors, H2 blockers, or antacids.

One important note from the guidelines: a normal or high iron result during a bleed or hospital stay does not rule out low iron. The test should be repeated later to be sure.

Pregnancy and after birth

MASAC recommends that pregnant people with a bleeding disorder be checked at least once in the first trimester, and again in the second or third trimester. They should also be checked after delivery, and again at 6 to 12 weeks after birth. Low iron after birth is often missed, and it is linked to tiredness, depression, and trouble thinking clearly, which can affect bonding with and caring for the baby.

What tests are used

The guidelines say screening should test for both anemia and iron levels. The tests for anemia include a complete blood count (CBC) and a reticulocyte count. The tests for iron include ferritin, serum iron, total iron binding capacity (TIBC), and transferrin saturation.

The numbers that mean a problem

MASAC set clear cutoffs for people with bleeding disorders, the same for males and females at all ages. A hemoglobin under 13 means anemia. A ferritin under 50 means iron deficiency. These cutoffs were chosen so low iron does not get missed in our high risk community.

What happens if your iron is low

The good news is that low iron can be treated. MASAC says treatment with iron, taken by mouth or given through a vein (IV), should start in a timely way once low iron is found. Treating low iron even before it becomes anemia can improve memory, language, and mood, and lower tiredness. Your care team will also work to control the bleeding itself, since stopping the blood loss helps keep your iron up. For heavy periods, the guidelines say hormone or non hormone therapies should be strongly considered to reduce bleeding.

The guidelines also note that some IV iron types can cause a drop in phosphate and should be avoided when possible in our community, since people with bleeding disorders often need repeat iron treatments. Ask your doctor which type is right for you.

What you can do right now

You do not have to wait for your doctor to bring this up. The guidelines were written in part to help our community speak up. At your next visit, you can say, “I have a bleeding disorder. Can you please check my iron and my ferritin?”

Knowing your iron is one simple and powerful way to take charge of your health.