Struggling a Lot

[mdb1986]

Hello - I'll try to make this quick. I have stage 2 cirrhosis due to autoimmune hepatitis. Took azathioprine many years (not now due to side effects) and have history of leukemia in my family. My blood counts are pretty low. Lower than they have been. I feel not well. I can almost tell when my body is really, really not right - and feel in some ways similar to how I felt when my autoimmune hepatitis was diagnosed.

The oddest sensation is in my bones. I don't know how to explain this, but it's as if my bones are "going to sleep". Maybe a tingling or numbness. I wonder if this is just my bone marrow shutting down. I have a very demanding job, and often times don't get a lot of sleep. When I sleep more, I feel better - as if my bones are waking up and full of energy.

I researched aplastic anemia, leukemia, and none of them seem to fit. Aplastic anemia because my reticulocyte count was normal. Leukemia because none of my differential WBC counts are high. Am I just seeing the effects of chronic lack of sleep and pushing too hard? When I push myself really hard, I can feel my organs begin to "Swell" if that makes sense. Like I feel my liver like a big hockey puck in my side.

The borderline positive ANA test has me concerned. I've posted all my abnormal values and reference ranges below. Also, I had a thyroid and lipid panel that came back normal.

All these issues makes it hard for me to eat. I am 6 feet tall and weigh around 100lbs.

Do I need to go on disability? I already work from home, but perhaps I am to a point where I need to let go. I can't imagine I'll live very much longer. I am 27. There are many nights where I wonder if I will even wake up in the morning. In fact I pray that God will let me out of my body. That isn't suicidal or me giving up. It's me wanting to move on. I'm almost hoping I'll get something that will finally tell me it's OK to stop working, to stop pushing myself so hard.

I'd really appreciate any thoughts that anyone has.

The listing of my abnormal counts are below.

Hemoglobin: 12 (Ref 13.5-17.5)
Hematocrit: 33 (Ref 41-53)
MCH: 35 (Ref 26-34)
Platelets: 126 (Ref 150-450)
Abs Neut: 1.2 (Ref 1.8-7.7)
Abs Lymps: 0.9 (Ref 1-5)
Sodium: 133 (Ref 136-146)
AST: 38 (Ref 15-37)
WBC: 2.6 (Ref 3.8-11)
RBC: 3.4 (Ref 4.5-5.9)
Vitamin D Hydroxy: 19 (Ref 30-80)
ANA: 1:40 Titer, Nucleorar Pattern (Ref, Below 1:40 Titer)
Blood Osmolarity: 274 (Ref 280-305)

Reticulocyte Counts were normal

[bailie]

I am sorry you are feeling poorly. You are in the right place to receive good information.

Your blood counts are almost exactly what mine were when I started Vidaza treatments four months ago.

[Marlene]

I can imagine you are very tired at this point. What jumps out at me is your low weight and low vitamin D status. Nutritional deficiencies as well as insufficiencies need to be further explored and corrected. Your health profile is very complicated and I wonder if you have doctor that can work with you on nutrition. Vitamin D, iron, copper, zinc and the B vitamins are critical in blood production. The low sodium can also be a result of an imbalance in electrolytes.

There's quite a bit you can do on your own also. It takes time and can be overwhelming especially when you are so exhausted.

You may want to start with your current doctor and address the issues you are having. Sometimes they overlook stuff because they focus on only one aspect of health so you need to advocate for yourself. If they cannot help you, ask them if they know of anyone they can suggest. Quality of life is important and they should help you with that too.