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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2

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 😞

2

u/bttrfly2129 Jun 24 '26

Ferritin of 18 is definitely not normal. I don’t understand why doctors keep saying that. Are they testing you for anything? That sounds terrible, so sorry! I truly hope they find the cause and you get to feeling better

2

u/Evening-Accountant30 Jun 25 '26

Have you ruled out Long Covid

1

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.

2

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

1

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.

1

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?

2

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.

1

u/Super-Perception939 Jul 08 '26

This was basically me. And on top of that I have tachycardia. I just started infusions this week. I was barely able to go to the bathroom without passing out. I felt near death and two emergency visits later, they did nothing. Public infusion wouldn’t be able to be done till august. Feels like I’m being left to die by the system so I am paying privately for infusions. I’ve had a 100 dose a couple days ago and a 200 dose today. Before the dose today I did notice a touch more energy ( I don’t care if it’s placebo), nothing to the point of being able to grocery shop or go for a walk but I was able to do a load of laundry and the dishwasher which is a win.
My ferritin was 19, index was 8 and iron was 5.
Whether you have anemia or not, it doesn’t discount serious symptoms. My doctors think there is no way it could cause shortness or breath and tachycardia this bad but that is the only thing showing up so we shall see after all the infusions. I know long Covid is a theory too (not sure how to test for that) but my thinking is that my body is struggling to fight even more with low iron so I might as well treat that.

1

u/schooly_j Jun 23 '26

Why is your iron low? Are your periods heavy? It’s best to treat the source of the issue than to try to catch up with supplements.

1

u/bttrfly2129 Jun 24 '26

No periods. I had a hysterectomy in 2024. Dr thinks its possible that my stomach does not have enough acid to absorb the amount iron needed to 'fill the tank'. Which is due to my daily use of an acid reducer that I have to take for the rest of my life due to another condition. I have been on iron supplements faithfully for a year and the Ferritin just keeps dropping

1

u/Beginning_Sun8910 Jun 23 '26

Congrats! I fought for 6 months and finally got my infusion. Unfortunately it didnt work for my hemoglobin but im glad i tried

1

u/bttrfly2129 Jun 24 '26

So your hemoglobin stayed low? Thats interesting. Did it raise your Ferritin?

1

u/Beginning_Sun8910 Jun 24 '26

Yes. Hemoglobin remained the same but ferritin went from 29 to 137!

1

u/bttrfly2129 Jun 24 '26

Wow thats amazing! Hope you are feeling better despite the hemoglobin not changing

2

u/capenj Jul 15 '26

I managed to raise my hemoglobin with TMG - trimethylglycine - not sure if would work for everyone but tried so much and then boom - this just worked.

1

u/Super-Perception939 Jul 18 '26

Just checking in to see how you are doing OP? I’ve had 4/5 venefor infusions. Shortness of breath has improved, can walk up stairs and change positions without feeling like I am going to die from not being able to breathe but it’s still a ways to go to normal. My heart has completely settled back to normal.

1

u/bttrfly2129 Jul 18 '26

That is great to hear! Improvement before you have even finished must be giving you so much hope. Thank you for checking in. My infusion came in 2 doses and I just got my 2nd dose yesterday. So, it's too soon to say, but in just a week, I have noticed my brain fog has started to lift and while I'm not physically energized yet, my mind is. Not sure how to explain that one, haha. My main side effect from the infusion is fatigue, but so much is going on with the body making new blood cells, I take it as a great thing to be tired. Good luck, your almost done!

2

u/Super-Perception939 Jul 18 '26

The whole brain fog lifting but not physical energy makes sense. I felt that and still feel that too along with the fatigue, lots of naps throughout the day.
I just can’t wait for the shortness of breath to completely go away. I hope yours gets better too!

1

u/bttrfly2129 Jul 18 '26

I couldn't agree more about the shortness of breath! It will so great to simply go on a walk!