Need Help - Hematology won't do testing

All so true! I am feeling optimistic that 2023 is going to be a fresh start on my health journey. I really appreciate the support, and you are so right about hugs.
{{Hugs}}

I too have had an issue with my hematologist/oncologist not wanting to do a bone marrow biopsy. I have had all the tests listed in one of the posts. All of them are now normal. I have been dealing with anemia for quite some time. Back in September I was admitted into the hospital for 16 days and during that time I had so many tests and procedures done to me I can't name them all without looking at my medical records. Prior to September my labs were all normal (for me) and then beginning of september I had a considerable change and everything went in dramatic directions. I was eventually diagnosed with cryoglobulinemia and they said it was stemmed from my sjogrens. But now with all the doctors appointments and labs, my results are back to normal pre-september. I still have anemia and am not iron deficient. my red blood count is still low but now my white blood count is normal. They wont do a bone marrow biopsy to see why im not making more RBC. Because everything is normal they say theres nothing they can do. its frustrating. Im still fatigued (which Ive had that complaint for quite some time. I just want answers to prevent myself from being in the hospital again for 16 days.

Just wondering. I have iron deficiency anemia and start IV infusions this week. Had six infusions in 2020 which helped with my symptoms immensely. Then they figured out my duodenum was unable to absorb the iron tablets I was on. I found a liquid iron formulation that since 2021 has helped keep my hct and hgb stable. Even been though i still take it apparently it is not working as well now. Had UGI which showed gastritis and inflammation that has been ongoing for a while. All that to say you might try a different formulation of iron to see if that helps. Good luck to you and I am sorry you are having such a hard time.

Have they evaluated you for Crohn’s disease? Eosinophilia emeritus, Helicobacter etc? Endoscopy, biopsy, blood testing?

UGI endoscopy with all biopsies you mentioned negative. Labwork drawn ever two months. Duodenum not absorbing from previous abdominal

Hi bscham. I have just started with a new primary. She is an internist, and I got very lucky getting in since it's usually several months for new patients. Interesting about my IgA...it is quite low (26), and prior IgA tests (2x over past 4 yrs), it was low both times. She is ordering evaluation by an Immunologist, but they aren't easy to find. My immunoglobins are all off. Also, I have had 2 endoscopic procedures but have never been told the results. I am gluten sensitive but ulcerative colitis is also possibility. 4 yrs with no answers. I have very bad ulcerative skin rashes for past 2 yrs. too. My eyes, tongue, skin, joints, muscles, etc., are all affected. I'm really hoping for answers + treatment soon. Thank you!

I'm so sorry to hear about the non responsiveness of your doctors. It seems to me to be a problem when the doctor has no clue what is going on so instead of telling you that and seeking advice from colleagues they pretend that nothing bad is happening. YOU HAVE A RIGHT TO SEE YOUR MEDICAL RECORDS!!! Assuming you're in the USA but I would think it's the same in other countries. Are you being treated with meds? Creams? Anything to help your symptoms ? I hate these long waits to see a doctor with a glowing reputation only to find out it doesn't hold up!! I've been there so many times and God forbid you look online!! I had one doctor yell at me when I was sitting across from him looking up a medicine he wanted to prescribe to see side effects because I'm very allergic to inactive ingredients or simply won't put them in my body. Your challenge is finding someone to advocate for you. Since Covid, things have been very difficult but not impossible. You should not be suffering....I'm sorry.

Just out of curiosity, did these symptoms start after Covid vaccines ?

Yes, I noticed new symptoms right away. I developed a flu-like symptom everyday in the afternoon ~~~ low-grade fever, sore throat, headache, malaise, and bodywide muscle aches. New symptoms in my eyes that were scary (see photo). Escalated joint pain...in places I never hurt before (ankles, shoulders). All of these were every day after the vaccine. Fever was between 100° - 101° and would subside at night. Why do you ask? I've wondered if anyone else experienced this? Thank you

It's sad to say but I would say it's the insurance company instead of your doctor. They will not pay if labs are normal and it's very expensive to pay out of pocket for a BMBX. I know how frustrating this must be for you. So sorry you are going through this. One thing I learned a long time ago as a nurse for 35 years, the patient knows themselves better than anyone and if you sense something is wrong...it usually is! Hang in there and don't stop fighting for your health.