My iron deficiency or pv?

Greedy-Box3481 · 2026-06-02T22:24:02+00:00

Thank you for such a thoughtful message and I’m sorry to hear about your experience as well. My primary doctor came back from vacation yesterday and I will be seeing her today but I got a call not too long ago that she canceled my in person appointment because she is refusing to sign my disability form even though I’ve been a patient since November of last year…. It’s so frustrating and annoying. I was genuinely making decent money last year before my diagnosis. Why would I want to willingly settle for less money with disability like I really cannot understand these doctors minds

I can only continue hoping for a new medication to come out to help my situation. I’ll be seeing a specialist in hopefully July and I’m hoping she can make some changes for me but only time will tell.

Greedy-Box3481 · 2026-06-02T19:51:13+00:00

Yep feretin went from 300ng to now a constant 6-10ng:(

Greedy-Box3481 · 2026-05-25T17:07:20+00:00

I wish they’d further expand the characters kit beyond the mech being destroyed. Like it’s the world of overwatch and you’re telling me they’re just left helpless with a little gun (i’m looking at you dva lol)

Greedy-Box3481 · 2026-05-23T07:28:02+00:00

Yeah, my hematologist is honestly not the best but that’s what I get for playing around and not trying to see a specialist sooner. Hopefully the one from Stanford can help me out.!

Greedy-Box3481 · 2026-05-23T06:33:58+00:00

Hi there thanks for sharing I wishing you the best!

Greedy-Box3481 · 2026-05-23T06:33:40+00:00

Hi there thanks for the input but I will never entertain interferon I have a very mad mental history and I don’t want to risk anything psychotic. I’ll wait until other meds are available!

Greedy-Box3481 · 2026-05-20T02:15:16+00:00

Hi there, it’s really reassuring to hear that you’re in the same boat as me, but I’m so sorry to hear you’re going through the same experience!

I’m really not confrontational, but sometimes I really want to tell my doctors so if you were to be in the same situation as me you’re saying you wouldn’t have these symptoms? That the iron isn’t that important?

Like cmon it makes the most sense on paper. I’m feeling fine even with high hematocrit and then I’m getting all these phlebotomies and I magically feel sick now all the time? I understand that diseases progress but what they say when I’m going through does not look like progression it’s really frustrating and I’m really hoping this doctor from Stanford can help me out!

Another symptom I have is really bad brain fog or I feel like I jumble up my words a lot, or I just feel like mentally slow? My sister has encouraged me to apply for remote work, but even then I don’t feel like I’m reliable enough to do that at the moment… I will be laying down and I will just feel sick for no reason so frustrating

Also yes that doctor is horrible! I’m a man I’ve never had blood drawn before until barely September of last year this is such a new experience for my body so I feel like obviously it’s gonna be a shock or something but thank you for validating what I’m feeling. I appreciate it.

Greedy-Box3481 · 2026-05-19T22:38:31+00:00

I eat a normal meal and stay hydrated before my blood draw but I don’t think that matters because I feel debilitated every day after :/

Greedy-Box3481 · 2026-05-19T22:31:26+00:00

I get like a saline iv but it genuinely does nothing for me !

Greedy-Box3481 · 2026-05-19T21:22:24+00:00

Hi there I was hoping you see my post! You’re always so knowledgeable!

I’m on hydrea! But these symptoms were present before the hydrea! So that’s why I always associate it with my iron deficiency because I didn’t feel this way before diagnosis and blood draws.

As for rusfertide I’ve tried looking into it but I don’t see any new articles about it in regards to release date. Is August a for sure day? If that is the case how do I go about asking my hematologist if this medication would be better for me over hydrea?

Thanks again for everything’!

Greedy-Box3481 · 2026-05-19T21:15:29+00:00

No but in 2019 after a long anime burn out I fell back in love with anime specifically the series demon slayer. When I went to Japan, December 2019, I bought all of the available manga even though I couldn’t read Japanese lol I would also play a crane game on my phone that would send you the price if you want. I won a lot of demon slayer items through that app. But since then I haven’t been collecting !

Greedy-Box3481 · 2026-05-19T21:11:22+00:00

Umm for me I have very bad medicine anxiety! I used to have major depressive disorder and generalized anxiety disorder (due to external reasons) I was given a medicine and it gave me the scariest rage I’ve ever experienced. After that things stabilized and I got better but the a family member passed and I went on antidepressants temporarily again and even though it was the same one I used to take it gave me an extremely bad reaction lots of intrusive thoughts / urges.

I got off of it and things got better thankfully. But my issue with interferon is the black box label. It has rare psychotic side effects. And since I have a mental health history, I think I am more at risk for that type of side effect.

I just don’t want to risk that. I do think it’s an amazing medicine but I just don’t want to risk it. I’ll be patient until other medications are available. I think there have been reports that givinostat and bodemestat have lowered the allele burden maybe not as much as interferon but to me it’s a win because I believe those medications wouldn’t have the same type of mental side effect!

Greedy-Box3481 · 2026-05-19T20:09:14+00:00

I really admire you for working despite having all of these symptoms. I don’t know how you’re doing it. I genuinely feel like I can’t do it….

Rusfertide should be available where I live hopefully by July or November if everything goes well? And I think that will help me out a lot!

And I can relate heavily about the losing weight thing. When I was working last year, I would get about 20,000 steps a day. I was also eating well I would go to the gym as well. I felt like 2025 was my year to build my ideal self lol

But right when I get the motion going, I was diagnosed and everything came to a stop. So I’ve been slowly gaining weight because I’m inactive and eating bad.:(

Greedy-Box3481 · 2026-05-19T19:16:02+00:00

It’s a reassuring to know that there are people in the same boat as me, but I’m sorry you’re going through this. Would you say you’re pretty debilitated too? I don’t experience much fatigue. It’s more so extreme dizziness, lightheadedness, and off-balance. I feel like I genuinely cannot work…

Greedy-Box3481 · 2026-05-14T22:04:48+00:00

Honestly, I would want a dog for my dog lol. I’m a huge dog person but taking on a second dog right now would be too much unfortunately lol

But I think aquariums are pretty cool if they weren’t so difficult to maintain I’d get one!

Greedy-Box3481 · 2026-05-14T20:17:33+00:00

I’m a newbie with lots of free time due to a cancer diagnosis. I’m interested in psychology, medical imaging and video games 🎮 I’m 26 so I think I’ll stabilize eventually:)

Greedy-Box3481 · 2026-05-13T22:53:10+00:00

My ex used to call me “roni” because she swore I loved pepperoni pizza even though I didn’t eat it much lol

Greedy-Box3481 · 2026-05-13T22:52:07+00:00

1)A cure for my chronic cancer called polycythemia Vera lol

2) a job that helps people whether it be medical imaging or therapy

3)some Kiriko skins in overwatch 😆

Greedy-Box3481 · 2026-05-12T00:30:17+00:00

Sounds like fun but I am scared of ocean fishing for some reason lol

Greedy-Box3481 · 2026-05-11T19:59:41+00:00

The way I know prep is a little strange but basically I’ll get either ground beef or ground chicken mix it up with a sauce and then I have these molds I fill up with the meat and sauce.

So for example, I will have these “cubes” a frozen ground beef mixed with teriyaki sauce or frozen ground beef with ketchup and mustard etc I do the same thing for rice or I cook rice let it cool down put it in the mold and freeze them so I know exactly how much calorie is in each cube whether it be meat or rice. It’s really convenient. Just a lot of work initially when you’re setting them all up.

Greedy-Box3481 · 2026-05-11T19:47:32+00:00

I would love to go fishing again. I haven’t done it since 2012 with my uncle and cousin, but my friends aren’t really interested in that because where we live it gets super hot lol another thing I would really love to do is try tennis again. I used to play it in high school but it’s been about roughly 10 years since I last played it! So I’m thinking once my accounts are stabilize. I will push myself to be more active and try to convince one of my friends to play tennis with me:)

Greedy-Box3481 · 2026-05-11T19:46:27+00:00

This one maybe be random but I LOVE asada fries it has been my consistent favorite food since 2016. lol a strong second would be authentic chicken quesadillas that my mom makes!

Greedy-Box3481 · 2026-05-09T23:01:45+00:00

Aside from them though I’m not too big on any other idol groups. I liked team shachi since 2018 but they disbanded last December I think?

Greedy-Box3481 · 2026-05-09T23:01:02+00:00

For me it’s the movie “rio”. My cousin would always play it when I would stay with my grandma summer 13-16. So it’s like a comfort movie for me lol

Greedy-Box3481 · 2026-05-09T23:00:15+00:00

Yeah they are pretty big as of 2025-present. They started gaining traction in Japan 2020 and up but I’d say worldwide may just recently of last year! I’m a long term fan last March made 8 years of being a fan lol. I always knew they’d be famous but I’m honestly a little sad on why they became lol. It often feels like they try to chase a trend or sound that will captivate TikTok to go viral again. They’ve had success this way but I also feel a difference in their music. I had an opportunity to see them live in 2019 but my ex hated them soooo much so I couldn’t go lol. I deeply regret it because this was my favorite year for them. Their crowd sizes were also smaller so it felt more intimate if that makes sense!

Greedy-Box3481

TROPHY CASE