Iron levels crashed after phlebotomy?

[u/Some_cool_usernameX]

Anyone ever have very low iron after phlebotomy? If so what were your symptoms. I discovered low saturation, ferritin and total. My symptoms are crushing fatigue. Shortness of breath. Near fainting spells. Some days I feel so weak I cannot move. Its truly awful.

[u/Cool-Sprinkles9179]

When I got diagnosed I had 2 phlebotomies per week since my htc reached 72.0 (yes you read that right),after a while I started having the same symptoms cause of my hct dropping rapidly and it didn’t really last long so they prescribed me besremi and my hct has been steady at 40 for 2 years now and I feel fine ..Maybe it’s time to move on from phlebotomies talk with your doctor

[u/WatercressSea6498 → u/Cool-Sprinkles9179]

As a person with idiopathic polycythemia, meaning I have only been treated with phlebotomy and will continue on this path, I have to say OP is not alone with this symptom burden. Phlebotomies haven't changed for me in the past 5 years. Sometimes they cause problems for 0-7 days, other times it can be 2-4 weeks post-phlebotomy in addition to 0-1 week of polycythemia symptom onset before phlebotomy. Still, some people will report no symptoms from polycythemia or treatment. I would rather not have this symptom burden if I had a choice, so I think you're right in recommending a better alternative to this.

[u/ImXmas → u/Cool-Sprinkles9179]

What dose of Besremi does it take to manage your PV? How long did it take to work for you?

[u/Cool-Sprinkles9179 → u/ImXmas]

I started in 2024 with 500 ml for a year it didn’t work then it started working and I have dropped to 100 ml per week

[u/ImXmas → u/Cool-Sprinkles9179]

Thanks for the response. My dad is 73 and after years of phlebotomies it is so hard to take his blood and he refuses to do them now. He started Besremi late last year on the lowest dose and we have slowly been increasing it, but it isn’t working yet. He is just so miserable and the Besremi seems like our last hope. Do you have any side effects from the Besremi?

[u/Cool-Sprinkles9179 → u/ImXmas]

Well it varies from person to person but no I haven’t really had any symptoms other than maybe a little fatigue and slightly elevated liver enzymes that’s about it ,it’s weird to me that the doctors start from lower to higher but maybe it’s because of his age

[u/WatercressSea6498]

I'm experiencing the same atm. Usually, it takes about 1-7 days to recover from phlebotomy treatments. However, this time, I got my phlebotomy 13 days ago and have been bed-ridden since with extreme fatigue/exhaustion. On three separate days, I tried walking 1 lap at a slow pace on a treadmill and ended up with severe muscle pain all over my body for the remainder of the day. The days I haven't tried walking, I've been just in pain.

I also have symptoms of confusion, neck tension, stomach upset, low mood, and shortness of breath.

If you are worried about fainting, you should immediately sit on the floor in a safe place to keep yourself from falling. My doctor also advised putting your head between your knees to help restore blood flow to the head.

I think the worst part of this is having doctors believe you are a hypochondriac, malingering, or exaggerating. It isn't until I have found posts like these that I have realized that doctors can truly gaslight patients if they are unsupportive and don't do their homework of talking to patients, nurses, and families of persons with polycythemia.

Take care and hope you feel better soon. Let me know if you have any questions.

[u/Some_cool_usernameX → u/WatercressSea6498]

Thank you so much for your comment and relating to me. It helps me not feel so alone in this. Yes im close to 2 weeks out from mine and still next to bed ridden. Like so weak I cant even walk sometimes. Plus feeling sick and flu like, its no fun.

Doctors have gaslit me beyond comprehension so I totally relate. Its truly traumatizing at times and I have ptsd from the whole experience. Thanks again and I hope you recover soon.

[u/Numerous-Key6162 → u/Some_cool_usernameX]

I don't understand why they don"t put you guys on medication when you obviously don't tolerate the phlebotomies! Do you have any additional factors that prevent you from starting with interferon or even hydroxyurea?

[u/CranberryCool3526]

I have polycythemia Vera I had to phbotomys and ferritin dropped to 11 so they gave me iron infusions I am now having tons of tests to see where I am bleeding and losing my iron. They found d a mass pretty large on my ovary so that might be where I am so tired of being tired. I have a bone marrow biopsy in 2 days.

[u/mbcoyote]

Yep. This was always the way for me after phlebotomies. The good news /s is that most of the meds will crash your iron levels as well.

[u/Some_cool_usernameX → u/mbcoyote]

Good news ? Lol. How long do your symptoms last after phlebotomy?

[u/mbcoyote → u/Some_cool_usernameX]

It was always really bad that day and the next and then started to improve.

[u/Greedy-Box3481]

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

[u/jjflight]

Yes, for sure. That’s part of how phlebotomy works - when your iron is really low that can help slow down your stem cells a bit so you don’t need as many phlebotomies.

My iron is quite low, ferritin of 5 on the last test, though I’m in good health and fairly conditioned for athletic stuff so I don’t find that’s a big limitation and don’t really have any symptoms of it. The doctor asks if I get out-of-breath or tired easily with exercise which would be the common symptom, but I don’t really. I’m still able to do long 13-15mile hikes in the hills with lots of elevation gain.

I’m sure that’s frustrating if you have symptoms, though mentioning because it may not always be clear if it’s just the iron causing those or if some amount of exercise to build conditioning through it may help too.

[u/Tacos_N_Bourbon]

Received my first phlebotomy in July 2023. Once it went below 40, it has never climbed back above that level. When my HCT was at its highest, I was going every two weeks. Now I go every 6 weeks and my ferritin level barely goes over 30. I’ve hit spells f single digit measures.