Not sure what going on yet...

[Elizabeth82]

Hello. I'm new to the forum. I'm not sure where I should post so I guess this is the right place. I tried doing some research on the web but it's getting confusing so I was hoping someone could offer some answers here.

Here's my story and I will try to give the short version. I have been sick a lot the past year. Hospitalized twice (March and June of last year) and have had to make several trips to the ER (usually after passing out in a public place). I also have diabetes which is usually under control but with several infections it has been hard to keep up with. I have had bronchitis and two kidney infections just during the past 6 months. Last July I started getting these lumps on my legs. It was finally diagnosed as erythema nodosum in December. Supposedly this is limited to only 2-8weeks but I have had this for 7 months now. Now along with these lumps/nodules I have started getting horrible bruises with out doing anything to get hurt. Right now my from my feet to my hips I have about 20-30 bruises and they have also started spreading to arms and belly area. I have also lost about 30 lbs over the last 3-4 months and barely have any energy.

My most recent blood work is below.

My platelets and lymphocytes were borderline low but with in normal limits. Hematocrit and WBC high end of normal limits.

RBC - 5.50 high (3.5-5.0 listed as normal)
Hemoglobin - 15.8 high (12.0-15.0 listed as normal)
Neutrophils Absol 0.3 critical low (1.5-6.6 listed as normal)
Neutrophils - 68 (40-65 listed as normal)

What I don't understand is how my Neutrophils Absol is "critical low" but my neutrophils are high. How could this be possible? Could someone explain this to me if you know? Maybe it is a lab error? From what I understand if neutrophils are low it could be why I keep getting sick over and over again.

Also is there a certain kind of doctor I should see for these kinds of problems other than my family doc?

Thank you for any help in advance.

[Marlene]

Is the 68 neutrophil count a percentage? If so, that means that 68% of your total white blood count consists of neutrophils. Your WBC consists of multiple types of white blood cells like lymphocytes, neutrophils, basophils, etc. You can have normal percentages of the different types of WBC but have very few of them because either your bone marrow is not making enough or the infections are using them, therefore, you don't see many in the peripheral blood samples. We would track absolute neutrophil counts to assess risk of infections; and the percentages, to monitor the activity of the disease. For SAA, the percentage of neutrophils is usually low and lymps are usually high.

Your blood counts may be a result of the infections and medication you've been on. Sounds like you have a lot going. What has your family doc suggested at this point? What does he/she think? You should explore you current and past meds. Was your WBC normal before you started any treatments? It's possible that one of your infections triggered an auto-immune reaction. Your doc should run blood test for auto-immune. I guess I would start with either a Rheumatologist, Hematologist and maybe an infectious disease doc. A good hematologist should be able to run test for auto-immune issues also. An absolute neutrophil count of .3 is very low and needs to be addressed. You are open to contracting infections at this point. If your family doc is not moving quick enough for you, then I would get another doc for a second opinion. You need to start ruling out things so you can zero on the root cause.

[Elizabeth82]

Thank you for your reply. The 68 neutrophil is a percentage. That’s why I was confused how the percentage could be high and the neutrophil absol be so low. I understand it better now with your explanation.

I have been told my WBC has been high several times this year from the infections I have had but don’t have any those actual numbers except the results I posted.

I just started seeing a new family doctor a month ago because I was not happy with my old one. When I started getting the lumps on my legs he just ignored them and I had to seek out a second opinion to get them diagnosed. The second opinion doc was a surgeon who did a biopsy on one of the lumps and said it was erythema nodosum (which can be associated with autoimmune disorders, some cancers, some medications, certain infections, or no known cause is ever found). It is an inflammatory reaction that causes nodules/lumps and necrosis of fat cells…and oh my is it ever painful. He sent all my info to my fam doctor and suggested he follow up with tests to try to find the cause. My old family doctor pretty much refused to do this and told me it would just “go away”… Since then I found a new family doctor. My new doctor stopped two meds I was taking zocor and lisinopril a month ago to see if that would help. He also made some changes to my insulin. He said if the changes didn't help he would start ordering more tests. I’m making another appointment this week with my new family doctor since it seems to only be getting worse. Hopefully I will get some answers soon. I hate feeling bad all the time.

Thank you again.

[mausmish]

I recommend seeing a hematologist.

[Marlene]

I'm glad you have new doc. I hope the pulling of those two medications help. They both have been known to cause problems for the bone marrow/blood as well as auto-immune type symptoms.

Marlene

[Ruth Cuadra]

Welcome to Marrowforums, Elizabeth. I hope you'll find some useful information and guidance about what questions to ask your doctor at our site.

Given the blood counts you've reported, I agree with Marlene and maumish that I would ask for a referral to a hematologist right away. You haven't said where you are located so I can't recommend a particular center, but you can find the one nearest to you using our interactive Treatment Center Map or list of U.S. Treatment Centers by State.

I had to deal with erythema nodosum (also known as panniculitis) as a late effect of my bone marrow transplant for MDS. The diagnosis was made by a dermatologist, not my transplant doctor. In my case, the condition was caused by taking oral estrogen supplements. Once I switched to an estrogen spray, the problem subsided but I am left with marks on my shins that look like old bruises.

Hope this help.

Regards,
Ruth

[Elizabeth82]

Thank you all for your help. I live in Indiana about an hour west of Indianapolis. I will check out the link you posted.

I did get into my family doctor today and he pretty much told me he didn’t know what was going on with me (I do appreciate his honesty but not very comforting). He said he was leaning towards some kind of auto immune problem at this point. He mentioned lupus, rheumatoid arthritis, hepatitis, or pancreatitis all as possibilities but not sure what at this point. He ordered a bunch of labs and said he would be referring me to someone else depending on how my new labs turn out.

For the erythema nodosum he gave me anti-inflammatory patches to wear since I have trouble with most anti-inflammatory types of pills due to some stomach issues. He also gave me a rx for steroids but said I needed to wait until the blood work is back before I can start them. I hate steroids. I’ve had so many bad experiences with them and they make it easy to lose control of my diabetes. Usually they result in a hospital stay. Hopefully I’ll be getting answers soon. I think the not knowing what’s wrong part of it is almost worse than how I feel.

Good luck to you all and thanks again for the help.