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Need Help - Hematology won't do testing

Posted by wiggins32 @wiggins32, Nov 28, 2022

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.

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wiggins32 | @wiggins32 | Jan 23, 2023
In reply to @zebra2022 "The first Oncologist didn't want to do the biopsy. He's only going to check my labs..." + (show)
@zebra2022

The first Oncologist didn't want to do the biopsy. He's only going to check my labs every 6 month. Doesn't seem interested in finding out the source of my anemia. The second one on the other hand did do the biopsy. It came back negative for cancer but thinks the source of the anemia is my kidneys. No definitive answer for my anemia. I have some answers but I still have more questions. I continue to research, and I most definitely ask questions to my specialists when something new pops up with what's happening with me.

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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 🙌

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jerrysgirl3 | @jerrysgirl3 | Jan 23, 2023
In reply to @wiggins32 "I'm guessing she's in early to mid-forties age range, which is young to me. And yes,..." + (show)
@wiggins32

I'm guessing she's in early to mid-forties age range, which is young to me. And yes, she is definitely seeking out an immunologist with focus on the immunoglobins (not easy to find those that have interest in the IG category, but I know she is determined. She is very tolerant of my overkill with lab & imaging results over past 5 yrs. I only share key info, but she is appreciative rather than disinterested. I have appt tomorrow and actually can't wait (who looks forward to doctor appts? Lol)

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I am so happy for you ! Sounds like you hit the lottery!!! 😁

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wiggins32 | @wiggins32 | Jan 23, 2023

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.

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wiggins32 | @wiggins32 | Jan 23, 2023
In reply to @jerrysgirl3 "I never had an issue with flu or pneumonia or tetanus vaccines." + (show)
@jerrysgirl3

I never had an issue with flu or pneumonia or tetanus vaccines.

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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

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wiggins32 | @wiggins32 | Jan 23, 2023

I am so devastated.
New doctor not what I hoped
Feeling helpless and hopeless.
Is anyone ever going to help me,,?

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jerrysgirl3 | @jerrysgirl3 | Jan 24, 2023
In reply to @wiggins32 "Dr. Doyle is a godsend. I have hit the jackpot! So very grateful." + (show)
@wiggins32

Dr. Doyle is a godsend. I have hit the jackpot! So very grateful.

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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.

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1 reply
jerrysgirl3 | @jerrysgirl3 | Jan 24, 2023
In reply to @zebra2022 "I too have had an issue with my hematologist/oncologist not wanting to do a bone marrow..." + (show)
@zebra2022

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.

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Zebra. Once again I have to ask. .. when was Covid vaccine or booster given in relation to your symptoms going bad then getting better ?

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wiggins32 | @wiggins32 | Jan 24, 2023
In reply to @jerrysgirl3 "Have you been to an immunologist ? Maybe go to a major hospital like Mayo Clinic..." + (show)
@jerrysgirl3

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.

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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 💗

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1 reply
jerrysgirl3 | @jerrysgirl3 | Jan 25, 2023
In reply to @wiggins32 "Hi jersey. So, I've been to big medical institutions and have found that bigger is not..." + (show)
@wiggins32

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 💗

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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 ❤️❤️

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jerrysgirl3 | @jerrysgirl3 | Jan 28, 2023
In reply to @wiggins32 "Correction...I meant to say I'm having bone density test done in 2 days." + (show)
@wiggins32

Correction...I meant to say I'm having bone density test done in 2 days.

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What were the results of your bone density test?

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