Need Help - Hematology won't do testing
I developed iron deficiency anemia 4 yrs ago for no apparent reason or event. I'm allergic to oral iron, so infusions required. The past 2 yrs, the need for infusions increasing. In 2022, I've had 4 infusions. The symptoms of IDA are life-altering for me. I've begged for testing beyond standard bloodwork, but they won't do it. I tried a 2nd opinion. No tests show source of blood loss, but my iron saturation is usually around 5, and other abnormal blood results. I have asked for a bone marrow test, but no luck. With the drop in Ferritin happening much more, I can't understand why they won't investigate. No tissue samples taken even with severe gastro issues (no cancer found). Any suggestions? I've tried changing physician group but every other group seems to fear my current provider. I'm stuck and sick.
Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.
Hi zebra. I'm sorry to hear you don't know reason for your anemia. It's been 5 yrs for me and it's worsening over last 2 yrs. Curious what became of theory about your kidneys being cause? Do you have iron deficiency anemia? I've been told the cause of mine is not cancer. Okay, that is great! But nothing beyond that. RBC is always low. RDW always high. Etc. I struggle with bad skin rashes that are either eczema type, or ulcerative lesions. Just some weird stuff.
New symptoms croping up. Are you experiencing osteoporosis? Mine has escalated big time in past year. I dunno. My Internist (new to me) seems really great. I'm hopeful. Tomorrow, I get results of bone density test. Do your doctors have a plan for reaching diagnosis? Sigh. Sorry for all the questions. Blessings 🙌
I am so happy for you ! Sounds like you hit the lottery!!! 😁
I hope so, jersey. For people like us, this is better than money even lottery. I am not treated with any medication for these symptoms. I do get iron infusions when my iron level crashes (about 4x year, but sometimes more). Glad your PA is young and ready to tackle complex cases like yours.
PLEASE READ POST that I just started as a new discussion. I am so gutted and heartbroken that I can't even speak right now. @raremiracle2
@sharonb
I am so devastated.
New doctor not what I hoped
Feeling helpless and hopeless.
Is anyone ever going to help me,,?
Have you been to an immunologist ? Maybe go to a major hospital like Mayo Clinic or Johns Hopkins. Everyone I know who goes there is very satisfied with all their doctors. And I believe they work in "teams" which is so important and where I live unattainable because everyone is in a different "group" and they don't share nicely.
Zebra. Once again I have to ask. .. when was Covid vaccine or booster given in relation to your symptoms going bad then getting better ?
Hi jersey. So, I've been to big medical institutions and have found that bigger is not always better. Yet, I have also traveled 1,200 miles to see a specialist and am so glad I did. My point is that there's no "silver bullet" in my experience. What happened yesterday that upset me so much was the doctor I've been bragging about did something I can't accept. She ordered a stool specimen - great! But she didn't have it checked for blood. What!!@ My HGB and Iron have been #1 health issue for 5 yrs. My stools have been black and tarry for months now, along with severe diarrhea lasting 6 mos straight. WHY would she NOT test for blood in stool?? Anyway, I don't plan to wallow in it. She's still going to be my PCP. I have appt with a highly recommended gastroenterologist on Feb 27th. Haven't seen immunologist yet. I'm sorry for venting!! I put way too much hope in this doctor that I had only seen 3x. She's not perfect but also not a bad person. I just feel my life is passing me by while I keep trying to get my health back. But today is a better day. I'm not giving up!! Ty 💗
No. Don't give up. 😁❤️
We just have to keep fighting for ourselves and maybe, find someone who will understand us and help us. Sending hugs ❤️❤️
What were the results of your bone density test?