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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Hi @wiggins32, this sounds very distressing for you. I'm glad that you've had testing to rule out cancer.

The standard tests for irondeficiency anemia are complete blood count (CBC) test to measure:
– red blood cells (RBCs)
– white blood cells (WBCs)
– hemoglobin
– hematocrit
– platelets

Additional tests to determine the underlying cause ususally include
– Further blood tests to determine how severe your anemia is and help determine treatments.
– Endoscopy
– Colonoscopy
– Ultrasound

Tissue samples or bone marrow biospy are not typically done. You can read more here:
https://www.healthline.com/health/iron-deficiency-anemia#diagnosis
When you say that you are allergic to oral iron, does this include not getting iron through diet? Do the transfusions help? What sources of IDA have they ruled out?

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@colleenyoung

Hi @wiggins32, this sounds very distressing for you. I'm glad that you've had testing to rule out cancer.

The standard tests for irondeficiency anemia are complete blood count (CBC) test to measure:
– red blood cells (RBCs)
– white blood cells (WBCs)
– hemoglobin
– hematocrit
– platelets

Additional tests to determine the underlying cause ususally include
– Further blood tests to determine how severe your anemia is and help determine treatments.
– Endoscopy
– Colonoscopy
– Ultrasound

Tissue samples or bone marrow biospy are not typically done. You can read more here:
https://www.healthline.com/health/iron-deficiency-anemia#diagnosis
When you say that you are allergic to oral iron, does this include not getting iron through diet? Do the transfusions help? What sources of IDA have they ruled out?

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Hi Colleen. Thank you for your response. I've had all the tests you mentioned. No type of anemia has been investigated, so I really wish I knew. I do not understand how it's okay to always have very low iron saturation, even after infusions. As time goes on, the infusions are less effective, too. I only needed 1 infusion in 2018 and same in 2019, twice in 2020, and 4x in 2021 and this year. And there is no in-between period of feeling well. There is some relief from certain symptoms, but short-lived over past 2 yrs. My symptoms are many and significantly life altering. My diet was excellent until 4 months ago, but I'm having trouble holding down food since July. Malabsorbtion is only thing Ive been told. Since July, I've had CT scans and ultrasound od gastro and everything is "normal" results. It's scary and I don't know where to turn because it seems my symptoms are increasing and new ones have come on. I was 100% healthy before this started.

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Hi Wiggins32
Sorry you are going through this. In reading about your symptoms it sounds a lot like what I had. I was diagnosed with celiac disease. Have they tested you for that? May only need a blood test to determine.

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That must be frightening and frustrating. I went through four hematologists before finding one I like, so from my own experience I can only encourage you to Keep Looking!

If your provider is blocking, can you change providers? By provider do you mean insurance provider? If on Medicare, you have between now and December 7 to change supplemental insurance. My choice is to never have an HMO. I like PPO United Health Care Plan F. They did not stand in the way of paying health expenses when I chose to go half way across the country to Mayo Clinic. That’s a long way to go to consult with a different hematologist! So glad I went and would go again if not for covid.

As Dr. Gladys McGarey always said, “Trust the physician within.” Trust yourself, follow your hunches, and find a way to find more thorough care. Sending encouraging hugs!

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@raye…thank you for the suggestions. My insurance is not the issue; rather, it is the hematology provider of 4+ yrs. They are constantly telling me that I have an iron absorption issue. And treat me with iron infusions. I want to at least know what type of IDA I have, and why it's getting worse. I have tried switching twice and ended up empty handed…docs are mega territorial in my city, it seems. I refuse to give up. I've just started with a new Internist and hopeful she will have some influence in improving my health. Thank you.

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@bscham

Hi Wiggins32
Sorry you are going through this. In reading about your symptoms it sounds a lot like what I had. I was diagnosed with celiac disease. Have they tested you for that? May only need a blood test to determine.

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@bscham. I have not been tested for Celiac, but it is something I should learn more about. How were you able to get to the diagnosis?
Thank you.

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@wiggins32

@bscham. I have not been tested for Celiac, but it is something I should learn more about. How were you able to get to the diagnosis?
Thank you.

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Wiggins32 my celiac was actually found by accident. I was hospitalized for a DVT in my leg and a pulmonary embolism is both lungs. I think they were caused by the vaccine but that is another story.
When they did blood tests my hemoglobin was at 8 and very low iron so they did a endoscopy looking for bleeding. They found the villi in my small intestine was not absorbing any nutrients which happens with celiac. Then they did a blood test for celiac which was called Tissue
Transglutaminase Antibody IgA and it was positive. When I looked up celiac disease symptoms I found I had been dealing with a lot of them for years. However I never got really sick from eating gluten so it was never found.
You probably don’t have it but certainly something to check into.
I hope you can find answers. Good luck!

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@wiggins32

@raye…thank you for the suggestions. My insurance is not the issue; rather, it is the hematology provider of 4+ yrs. They are constantly telling me that I have an iron absorption issue. And treat me with iron infusions. I want to at least know what type of IDA I have, and why it's getting worse. I have tried switching twice and ended up empty handed…docs are mega territorial in my city, it seems. I refuse to give up. I've just started with a new Internist and hopeful she will have some influence in improving my health. Thank you.

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@wiggins32: Physicians are very careful not to tread on the egos of others practicing their specialty in their offices. When MGUS was diagnosed I did not receive a referral to a hematologist, and just picked one at random. My mistake! Hemo #1 seemed to say “good bye” before he even said “hello.” An uncaring cold fish. I stopped seeing him and decided to go to Mayo to learn about my new condition. A couple of years passed and I went to others before I returned with a referral to the same large local hemo/oncologist office with a referral to one I now see. For you it will be different because you’re experiencing greater urgency. Then came a little dance of formalities. First Hemo#1 had to be contacted and his permission granted to see a different one. Accomplished. I’m relieved. By the way, it was my Hemo who encouraged me to go to my present internist after the first one retired.

Suggestion: can you maybe research the different local hematologists online? Google them? I’m wondering if finding a different internist will help. Maybe. Let’s hope so!
Sometimes progress does not evolve in a straight line.
Wishing you all the best in your persistence!

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@raye

@wiggins32: Physicians are very careful not to tread on the egos of others practicing their specialty in their offices. When MGUS was diagnosed I did not receive a referral to a hematologist, and just picked one at random. My mistake! Hemo #1 seemed to say “good bye” before he even said “hello.” An uncaring cold fish. I stopped seeing him and decided to go to Mayo to learn about my new condition. A couple of years passed and I went to others before I returned with a referral to the same large local hemo/oncologist office with a referral to one I now see. For you it will be different because you’re experiencing greater urgency. Then came a little dance of formalities. First Hemo#1 had to be contacted and his permission granted to see a different one. Accomplished. I’m relieved. By the way, it was my Hemo who encouraged me to go to my present internist after the first one retired.

Suggestion: can you maybe research the different local hematologists online? Google them? I’m wondering if finding a different internist will help. Maybe. Let’s hope so!
Sometimes progress does not evolve in a straight line.
Wishing you all the best in your persistence!

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@raye. Oh my goodness. I am so relieved to hear that I am not alone with the changing doctor issue! It's so political, and I'm just trying to get better; not be in medical politics 🙄. To your point of "new" internist, I just got signed on with one and 1st appt is 12/27. Have heard great things about her, and I'm hopeful! I do have several symptoms of Celiac, and hope to be tested. Did you ever have foamy urine? Pancreatitis? Sudden weight gain? I've experienced warp speed advancement of osteoporosis in past 10 months (now in shoulders, wrists, and ankles). Peripheral neuropathy is constant in my feet and calves. I totally understand "progress not in a straight line". But I just turned 68, and this started at 63 yo. I had to retire bcuz of this. Now I worry that my life long bucket list of traveling may not happen. Other words, time is marching by and none of doctors seem to have any sense of urgency, and hemo is satisfied to treat IDA. I just asked her if I can get testing (other than gastro); bone marrow, etc. Anything? She says no and seems to think I'm a hypochondriac. But I've never had foamy urine until past 4 months, or painful neuropathy, and my right shoulder started drooping a lot since June. Soooo hopeful about my new internist! Fingers crossed.

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@wiggins32

@raye. Oh my goodness. I am so relieved to hear that I am not alone with the changing doctor issue! It's so political, and I'm just trying to get better; not be in medical politics 🙄. To your point of "new" internist, I just got signed on with one and 1st appt is 12/27. Have heard great things about her, and I'm hopeful! I do have several symptoms of Celiac, and hope to be tested. Did you ever have foamy urine? Pancreatitis? Sudden weight gain? I've experienced warp speed advancement of osteoporosis in past 10 months (now in shoulders, wrists, and ankles). Peripheral neuropathy is constant in my feet and calves. I totally understand "progress not in a straight line". But I just turned 68, and this started at 63 yo. I had to retire bcuz of this. Now I worry that my life long bucket list of traveling may not happen. Other words, time is marching by and none of doctors seem to have any sense of urgency, and hemo is satisfied to treat IDA. I just asked her if I can get testing (other than gastro); bone marrow, etc. Anything? She says no and seems to think I'm a hypochondriac. But I've never had foamy urine until past 4 months, or painful neuropathy, and my right shoulder started drooping a lot since June. Soooo hopeful about my new internist! Fingers crossed.

Jump to this post

@wiggins32. No I didnt have most of those ailments. I have a different bouquet of afflictions and could write a book about weight gain. Has your B12 been checked? Vitamin D? We are not married to our doctors. Hope your next one will be worth your while to stay with. If not, there are probably others. One can even google a Docs name and find a U.S. News and World Report rating for some of them. Fortunately I like my two primaries, (internist and hematologist) and feel fortunate to have connected with them. They are not perfect, but they reciprocate hugs when I see them, which always helps one feel better. A hug is a gift wrapped in arms!

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