My iron deficiency or pv?
So long story short, I am 26 and have PV. I was diagnosed September of last year at that time my hematocrit was 65%. I am seeing a local hematologist and when he seen that number, he freaked out and essentially removed 6 pints of blood from Me in one month. With each blood draw, I began to tell him that I’m feeling dizzy or lightheaded and he said that’s just how it has to be.
Fast-forward to November 2025. We finally do some testing for iron and my ferritin was at 6NG but looking back at a lab for March 2025 my ferritin was 300 NG…. I felt so much better with a higher dangerous hematocrit than I do with a safe hematocrit.
My blood rise is relatively quickly, so it has to be drawn about once or twice every month as a result my iron has no time to build up(which I know I need to be iron deficient, but I feel so debilitated)
Since the iron deficiency, I’ve noticed so many symptoms: off-balance, dizziness, lightheadedness, nausea, blurred vision from dry eye, sometimes shortness of breath. In November and December of last year, the symptoms were pretty bad and super strong. I would also get this random sensation where it felt like my legs and arms were being squeezed or they would fall asleep easily, but as the months went by these two symptoms went away. It’s just now more so the dizziness and lightheadedness that are so consistent. I genuinely cannot work like this. I get so exhausted with the smallest amount of work done or I wouldn’t even say exhausted, but it will trigger in bad episode of lightheadedness and dizziness.
As a result, I had to quit my job last year in November. I had filed some short-term disability and it was barely approved last week even though I submitted it in November it was for only 20 days and I’m really grateful I got the money but even now I still feel I am unable to work. Yesterday I followed up with a primary healthcare doctor to see if she could fill out my extension. She claims to have once been a nurse practitioner in an oncology/hematology department. She basically said that I am depressed and need antidepressants and that really caught me off a guard because I used to have depression a few years ago as well as an anxiety disorder, but they never felt like these symptoms that I am experiencing right now. She then told me “ it’s not like you’re having 2 pints of blood drawn from your monthly” I was so angry with her and I told her I literally am lol
She then backtracks into saying that woman have period of the monthly and they also lose blood, but they still have to move on with life and even work and for that type of reason, she wouldn’t fill out my disability. I just feel frustrated and stuck. On the outside I look fine and healthy, but on the inside, I genuinely feel so sick and dizzy, and always hits me like a truck and it’ll come when I least expect it.
And I have tried seeing therapy before back in November of last year when my symptoms were the strongest, and even the therapist agreed that when I’m experiencing more so aligned with nutritional deficiencies as opposed to something actual mental.
But that interaction with the doctor yesterday just really rubbed me the wrong way. And now it’s making me question myself. Am I actually depressed? because I don’t feel that way I feel like I want to work out, go to work, and go to school not like I feel hopelessness or anything like that(keep in mind I used to have major depressive disorder so I know what I guess a form of depression feels like, but what I have right now it doesn’t feel that way)
And if I’m not depressed, could it truly be the iron deficiency causing these issues because I genuinely had none of these symptoms until they started drawing blood for me and I became iron deficient my bone marrow biopsy showed that my iron stores were zero out of four. When reviewing the biopsy with my hematologist, he said again that things just have to be this way, but he would be okay entertaining rusfertide when it is released because he does not want me to be on hydrea since I am young
And lastly if it’s not depression or my iron. Could it simply just be the polycythemia Vera making me feel this way? Because when I tell my local hematologist about my symptoms he says that my iron needs to be low and then send me over to my primary doctor so then I talked to my primary doctor and they always say that my iron isn’t that low even though it’s in big red letters on the lab report that it’s in low. And even if it isn’t low in their eyes, I’m sure there’s a threshold to these things for each person, right? Like you’re telling me that in March 2025 I was at 300 NG and then I’m suddenly down to 6NG and you’re telling me it’s not normal for me to suddenly experience symptoms.? and honestly makes me feel frustrated and unheard but multiple primary doctors have told me this so I don’t know if they’re just wrong or what exactly…
On the bright side I asked for a referral to see Dr. Jason Gotlib at Stanford so I hope he can help me but I was told by the new patient coordinator that it’s up to his team and if they decline I’d be given to a regular doctor their at Stanford:/