Just Diagnosed??

[Hispit]

I'm new... I'm a 50 y-o female who is confused..... In March I got my labs back and was surprised to learn about my anemic state...
WBC: 6.5
RBC: 2.5
HGB: 8.5
HCT: 11

Found a hematologist who has tested and tested... not iron deficient...so he said it was Hemolytic Anemia. But he could not TYPE it... it didn't fit any of the protocol for any of the several types. So, he did a BMB in July. I have yet to have a follow-up appt (which is scheduled for Aug 24), but he did order Iron Infusion Therapy, which I had 1x, 2 weeks ago. I asked for copies of my recent labs and reports, which I got. I just didn't really read them.

3 days ago I looked at the BMB path report, which states Aplastic Anemia. However, when I got the iron infusion, the paperwork said: "Iron Deficiency Anemia". Am feeling very confused, esp in light of many more intense symptoms of the past 2 weeks...the extreme fatigue, headaches, weakness, shakiness, the sound of blood rushing into my head, heavy heart pounding, nausea, etc.

With this on my report, should I assume this is so? The AA? Does this doc sound like he is current with my situation? Need some advice...
Thx

[ellmp]

If the biopsy says AA then that is the diagnoses. BMB is conclusive. They diagnose AA by seeing a lack of precursor cells (Megakaryoctes) which produce the other blood cells. Your wbc's are normal which is a good sign. Good Luck with your recovery

[Marlene]

I would call the docs office this morning and tell them of your symptoms. Your HGb may have dropped and if that is the case, you may need red cells. If so, all of your blood products need to be filtered/leucocyte reduced and irradiated. You should also be tested to see if you are CMV negative or positive. CMV is a virus most have had and if you have not had it, you want your blood products to be CMV negative. The filtering of blood products usually will eliminate it but they should always request CMV negative for you if that is the case.

You comments about not being iron deficient and then getting iron infusion is confusing. If it's just your red cells, I assume they checked for b12, folate, B6 and copper as well as iron. Request the actual lab report of your results. Your B12 needs to be at least 500 especially in the presence of anemia.

Finally, what is platelet count and ANC. You need to track those two numbers also.

But first, address your symptoms with your doc and don't wait for your next appt. And then you really need to see someone who has experience with SAA. They need to rule out genetic diseases and should also check for PNH. PNH affects the red cell line and can co-exist with SAA.

Marlene

[Lisa V]

I agree, this is confusing. You need to follow up with your doctor immediately and find out what is going on.

Just based on what you've told us, though, I wouldn't jump to the conclusion that it's AA. Your red count is low, and that would certainly explain your symptoms, but your white count looks good. As Marlene says, you need to look at your platelets and neutrophils (ANC) too, but if your overall white count is that good, I wouldn't expect your ANC to be too low (neutrophils are just one component of the white count, but a very important one). For it to be AA, at least two of the three lines (RBC, WBC & PLT) need to be low, and usually all three are. A diagnosis is made based on both the BMB results (marrow cellularity, any abnormal cytogenetics, etc.) AND your peripheral blood counts.

If it's just your RBCs, something else is going on, but either way it needs to be addressed. Your doctor hasn't said anything about a red cell transfusion? They generally don't like your Hgb to go below 8.0, and will usually transfuse at higher levels than that if you're having symptoms or if it's dropping rapidly. Another option may be the use of EPO (RBC growth factor) drugs such as Procrit or Aranesp. They don't work for everyone, but it's worth looking into.

[triumphe64]

I have Pure Red Cell Aplasia. It only affects my red cells and Hgb. It is rare even on these boards. I don't know where you live, but a second opinion is a good choice, especially from a medical school. It took three BMB's for mine to be diagnosed, the third one was sent to the local medical school.

The good news on PRCA is that some cases can be cured because they have an underlying medical condition. Mine is autoimmune, but once I found an experienced hematologist who is familiar with the medications involved, it is fairly easy to manage.

[Hispit]

Originally Posted by Lisa V

I agree, this is confusing. You need to follow up with your doctor immediately and find out what is going on.

Just based on what you've told us, though, I wouldn't jump to the conclusion that it's AA. Your red count is low, and that would certainly explain your symptoms, but your white count looks good. As Marlene says, you need to look at your platelets and neutrophils (ANC) too, but if your overall white count is that good, I wouldn't expect your ANC to be too low (neutrophils are just one component of the white count, but a very important one). For it to be AA, at least two of the three lines (RBC, WBC & PLT) need to be low, and usually all three are. A diagnosis is made based on both the BMB results (marrow cellularity, any abnormal cytogenetics, etc.) AND your peripheral blood counts.

If it's just your RBCs, something else is going on, but either way it needs to be addressed. Your doctor hasn't said anything about a red cell transfusion? They generally don't like your Hgb to go below 8.0, and will usually transfuse at higher levels than that if you're having symptoms or if it's dropping rapidly. Another option may be the use of EPO (RBC growth factor) drugs such as Procrit or Aranesp. They don't work for everyone, but it's worth looking into.

Yes...I quoted the WBC as being 6+... However now, as of August they are 4.0. Platelets are about 250...not too bad, but I am developing many more petachae...

[Marlene]

With a 250K platelet count, you should not be having petechiae. Did you mean 25K?

WBC can fluctuate and you really need to look at the breakdown of the white blood count. It's a differential count. You want to track the lymphs and absolute neutrophil counts (ANC), which sometimes called granulocytes.

marlene

[Neil Cuadra]

You can find an explanation of differentials and absolute neutrophil counts on the Marrowforums ANC: Absolute Neutrophil Count page.

[Hispit]

Originally Posted by Marlene

With a 250K platelet count, you should not be having petechiae. Did you mean 25K?

WBC can fluctuate and you really need to look at the breakdown of the white blood count. It's a differential count. You want to track the lymphs and absolute neutrophil counts (ANC), which sometimes called granulocytes.

marlene

Marlene:
I am unclear on reading my labs... It says 271, and the ref range is 140-440 K/uL. I have NO idea what this means. Do you know how to decipher?

[Marlene]

Most lab reports will flag any value that is high or low in relation to the reference range. Sometimes the flag is just an asterick (*), or sometimes they use "h" for high and "l" for low. Based on what you wrote, 271 would be 271K and is a very good platelet count and is within the normal range.

The counts most of us with SAA track are WBC, LYMPH, ANC or GRAN, HGB, HCT and PLT. All are important but most of us focus on the above because they are the critical numbers to watch. ANC for risk of infection, Platelets for risk of bleeding, and HGB/HCT to determine if red cells are needed.

Most have transfusion goals for platelets and red cells based on these numbers and symptoms. It's also useful to track trends...upward or downward trends to monitor your progress.

Take a look at the link Neil posted to better understand your white count.

With platelets at 271, I would push my doc to figure out why you are having petechiae. They can also check your clotting factors to see how well you clot.

It is always good to get a second opinion and one from a really experienced doc who has dealt with SAA.

Marlene

[JEZ]

I work in health care so I tend to go for a lot of detail in trying to understand the blood work/ labs. I liked a web site called carbonbased.com/definitions.htm but there are many online that give definitions of hematology and chemistry labs.

[destiny09]

It is tough getting going, my daughter is newly diagnosed with this too, I have been told it's hard to find good doctors. She even see's colors differently when hemoglobin is low. she has a care page at www.carepages.com search alexisrose You might like to see what we have been thru and maybe you can learn from our mistakes or things that she has been thru.

[destiny09]

Since lex has been diagonsed with very severe aplastic anemia she had a round of atg, which led to fungal infections and a blood infection. She was hospitalized for months at end. 4 weeks ago, she had another bone marrow biospy- she didn't respond to atg, her hemoglobin is running in the 7's, her platelets are staying at 6,000, her white cell count is .5. She has no ANC. She isn't resonding to neupogen shots. Her bone marrow is still showing 95% bone marrow production lost. She is going for an emergency bone marrow transplant. We are looking for a donar now.