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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.
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You have a right to all answers regarding your healthcare, labs and tests. Not only that, you can get copies of all your results. Most physicians have a patient online site you can enroll in and see those results as soon as the doctor signs off as seeing them. Best of luck to you and don't be shy about asking questions about your health or results. It's your life!
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6 ReactionsWhen did you have the vaccinations and/or boosters that caused these issues! I've been doing "research " so to speak through different sites, listening to peoples conversations, my own experience with extremely high BP after first vaccine and change in labs and by reading articles where it is mentioned (very very rarely of course) that they either don't recommend boosters or at least not so many (I've read of people who've had like 7-8 boosters trying to boost their immune system. And not helping. And sometimes having further issues. I personally think it is wiping out peoples natural immunity. And the fact that suddenly Covid is being called into question on almost all the sites I am on suddenly, when I was talking heart issues two years ago for seniors not just "young men"!!!!! Look it up about are boosters really safe for immune compromised people or whatever your issue is. Mine is heart. And you can find it. 🤷🏻♀️
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6 ReactionsThank you for encouragement, Sharon. I do understand the insurance factor. But I have also asked for bone density testing, which is 100% justified given that xrays and CT scans are showing significant worsening of osteoporosis over the past year. My right shoulder now drooping like a downhill ski slope and very noticeable to naked eye. Never had shoulder or ankle pain before 2022, but serious pain now. I also have developed peripheral neuropathy in both feet and calves. So, I changed primary to an internist 2 mos ago. She was shocked that I've never had bone biopsy before with an existing 10+ yr diagnosis of arthritis, that is rapidly worsening. Thankfully, I am having that test done in 2 days. Also, to the point about bloodwork results, there is the factor of which tests a physician orders. In my case, everything has been surface testing until my new doctor. She tested things I've never heard of, and found abnormalities. I am finally hopeful bc my new internist is clearly excellent but also digs to get to source. Thank you so much!
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3 ReactionsCorrection...I meant to say I'm having bone density test done in 2 days.
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1 ReactionThe 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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5 ReactionsI had booster in Feb 2022, and had the reactions I detailed in earlier post from that Covid booster. I am confident the booster caused the new symptoms. Again, my eyes were frightening. I had just started a new job the week after the booster...had to keep my office dark bc light hurt them. I really struggled using the computer. If you look at at top photo, you will see my eyes had bumps everywhere and basically were bleeding. Yes, eyes can bleed. Had to close my eyes and take multiple breaks from computer for these reasons. It was so bad that I quit the job. It was good money, too, but the misery wasn't worth it.
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2 ReactionsWas the booster the same brand as vaccine? Which one was it ?
Oh that's great. So glad you found someone to help you. Unfortunately, sometimes we have to seek a different doctor but it sounds like you struck gold with this one.
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2 ReactionsIt was Pfizer. I'm not sure if it was technically a booster, though. I had one vaccination a year earlier (early 2021), but don't recall the maker. Also, I had the Delta variant of Covid in July 2021. It was nightmare. Fever 104° for 6 days/nights. Delirium. I was alone the entire time...no visitors. Two weeks into it, I was pretty much incoherent most of time. But I could tell that my arms and legs were twice the normal size and bulging veins all over. Very painful. Had a gut feeling that this symptom could mean death, but no idea what was happening. Finally drove myself to ER ( again...had gone 7 days before, but before this symptom). Anyway, turns out I had 9 blood clots (in all extremities) + pulmonary embolism in each lung + plus double pneumonia. The point is that vaccine didn't stop the virus from kicking my butt.
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2 ReactionsDr. Doyle is a godsend. I have hit the jackpot! So very grateful.
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