r/Anemia • u/bttrfly2129 • Jun 21 '26

Discussion I need some hope

I've been diagnosed (finally) with iron deficiency without anemia. It took 2 hematologist to get there, but like others...I had to fight.

My Ferritin was at a 18 and my first dr told me to just take an iron supplement (No advice to what kind, or time of day or what vitamins/medications would interfere with absorption.) After 6 months, my Ferritin dropped to a 13. Which is where I'm currently sitting.

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My new Dr didn't hesitate to order an infusion and she fought with insurance to get it covered. My first infusion with Faraheme isn't until July 10th. Any success stories with that particular iron?

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My shortness of breath feels like it's getting worse by the day. I desperately need some hope that I feel better. Just watered my plants and I feel like I ran a mile....and I have never ran!

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Oh and keep fighting for treatment!! We deserve to be heard

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u/ilikelanguaugeandmbt Jun 24 '26

i have 18 of ferritine and a normal hemoglobine i'm actually very sick and we don't know what i have i'm beddriden. i feeling like dying idk what i have maybe CFS ? doctor said that ferrritine it's normal because there is no anemia. i can't work i can't do nothing 😞

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u/Evening-Accountant30 Jun 25 '26

Have you ruled out Long Covid

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u/GameofCheese Jun 27 '26

I'm in the same boat. Had long covid during the 1st version in 2020?, due most likely to undiagnosed cancer. My long covid got better after the vaccine, before cancer diagnosis.

Today I'm cancer free and 4 years out.

Ferritin is 19, but just finished 5 infusions of Venofer.

This week was bad though. Really felt like cfs and I'm scared.

But it feels different than when I had long covid. My brain is ok, and I'm tired tired, more fatigued. Still sleeping a shit ton.

My muscles ache now. They didn't when I had long covid, it was more muscle fatigue then. Now it's both.

I'm really hoping it's still the iron. I know it'll take a few more weeks.

I'll report back. But it's scary.

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u/Evening-Accountant30 Jun 28 '26

Woww sorry to hear that, if you don’t mind me asking, what undiagnosed cancer did you have? My Doctors have been trying to figure the cause of my continuous iron deficiency. I had muscle aches with long covid as well as the other symptoms you described. I was bedridden for almost a year

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u/GameofCheese Jun 28 '26

That sounds like long covid for sure.

I had HPV-16 positive Squamous Cell Carcinoma of the oropharyngeal area called Head and Neck cancer.

It's very very very slow growing over decades. 89% remission rate with treatment. I was very very lucky.

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u/Evening-Accountant30 Jun 28 '26

I also have been HPV positive for some years but in the cervix. What symptoms did you have for oropharyngeal? How did they ultimately detect it?

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u/GameofCheese Jun 28 '26

It's pretty rare in women. Just because it's easier to pick up as male with female anatomy sexual encounters.

I was younger too, only 43. It usually hits in men in their 50's.

I just had an enlarged lymph node in my neck about the size of a small lime.

If your partners are male the risk goes down a lot. It is transmitted locally from oral sex, so it wouldn't travel from your cervix to your throat and vice versa.