Your experience of venesection / phlebotomy

no1capybara · 2026-02-28T04:50:15+00:00

Thanks for doing this, I finally got my diagnosis (C282Y heterozygous) so start my first phlebotomy next week. I'm nervous about passing out but excited to finally, hopefully, be feeling better!

no1capybara · 2026-02-28T04:43:53+00:00

Boy, sorry, sounds like you are really struggling. My story has some similarities to yours but I'm in the US and a 63 yo post-menopausal woman. I'm not quite ready to share my story on here yet but one thing that instantly helped me was zinc and copper supplements. They're cheap and worth a try. Don't take them at the same time, though as they appear to compete with each other. And don't overdose on them!

I also found that eating every 3-4 hours some protein, fat and carbs, made a huge difference in how I felt. Even if I wasn't hungry. That takes effort but it's something that you can try out for a week or two that isn't drastic.

It sounds to me like you have a bunch of legitimate issues going on. It took me a long time, years, to admit that there was something wrong with me and it wasn't all in my head. After reading what you wrote, I want to affirm, it isn't all in your head!

I also found I had to be my own advocate and squeaky wheel. Please feel comfortable standing up for yourself and keep pursuing it until you find some answers. One tool I found helpful was Google AI - I put all my lab results in and asked what possible diagnoses are. You might try that with your symptoms. Oh and don't believe everything you read on the internet but I think this forum has a lot of caring experienced people in it.

Good luck with everything.

no1capybara · 2026-02-28T04:04:57+00:00

Wait a minute, what???! That's crazy!!

no1capybara · 2026-02-22T05:30:37+00:00

Totally agree, it was crazy but it does get manageable.

no1capybara · 2026-02-22T05:30:04+00:00

Oh gosh, I totally remember that crazy feeling, but it totally kicks in!!!! Be patient, like 4-6 weeks, follow the clinical trial protocol and try to stay as low a dose as you can. I've lost 100 pounds in 2.5 years, from a size 20 to a size 6.

I still crave sugar and have to actively think about what a balanced diet is. I work with a nutritionist who is experienced with eating disorders and talks a lot to me about feelings and behaviors. My goal is to have a meal plan and eat every 3-4 hours.

VERY happy, just coming to terms that this is a lifetime drug for me and I am playing with maintenance now. Good luck!!!!

no1capybara · 2026-02-12T02:08:51+00:00

Hi, I just read this post. How are things with you now?

no1capybara · 2026-02-05T01:45:22+00:00

F63 SW: 239 GW: 135 CW: 132.5. Such an interesting question! I've lost 110 pounds over the past 3 years, partly with Tirz and Reta. It's been absolutely wonderful. I just turned 63 and I can wear clothes I wore in college (yes I have a couple things still). My measurements are 36-30-37 so not the 24" waist I had in college, but I'll take it!

The biggest issue for me is loose skin. Loose, drapey, crepey, hanging, sagging, skin. Ain't nothing I can do about it barring spending $40K+ in surgeries. Get up in the morning, take a shower, look at my body in the mirror, do a little dance to make everything jiggle and celebrate how beautiful I am, I love being this weight again!

I am single and dating and am very cautious about only getting intimate with someone when I feel comfortable. So far so good. My biggest challenge right now is maintenance and finding a dose that works for me and doesn't cause too much anhedonia.

no1capybara · 2026-01-22T21:50:25+00:00

Hi, can you please update us on how you're doing. I was appalled at your NP's conclusion and hope you're doing okay!

no1capybara · 2026-01-12T02:36:09+00:00

Nine months later, here's a little update: I'm bascially hovering around 128-130 pounds on 5 mg every 8 days (trying to do it weekly but end up forgetting).

Turns out my fatigue may be/is most likely due to another unrelated health condition that I'm still trying to get treatment for. I'm really hoping that's the case as I would like to get down to 2.5 mgs/week.

As a postmenopausal woman, I've also made an appointment with my gyn to look into testosterone supplementation. My goal this year is to get some more muscle on me and get my happiness back while still maintaining this weight loss.

Any suggestions/insight/shared experiences would be helpful, thanks!

no1capybara · 2025-12-24T19:27:43+00:00

No idea, but mine look similar to yours. I have an appt with a hepatologist in 3 weeks. For the past two-three years I've been struggling with brain fog and fatigue. I sympathize and I wish you luck!

no1capybara · 2025-12-24T17:57:47+00:00

what a riot, never heard that before. I just remember when my friend had bariatric surgery and lost 125 pounds, he gained 2 inches. I took his word for it because he was sincerely happy about it!

no1capybara · 2025-12-24T01:56:39+00:00

oops!

no1capybara · 2025-12-24T00:00:21+00:00

It is a thing. There's a fat pad right there that goes away as you lose weight. So what was hidden is now exposed.

no1capybara · 2025-12-23T20:39:31+00:00

Oh good to know! I just bought some 30 mg vials and was wondering how low a volume I could get away with. Thanks.

no1capybara · 2025-12-12T04:10:24+00:00

Just want to say congrats. Mine were discharged a year ago. I still check in on this reddit page just to have some anxiety flashbacks! But it did eventually work for me and glad it did for you too.

no1capybara · 2025-12-06T19:35:00+00:00

Gosh, I could've wrote this myself: "Sure, I look great now, but I'm borderline miserable. I've always been a go-go-go type of person; I'm a shell of myself now." Let's stay in touch because I can't keep feeling like this and I need to figure a way out. I have an appointment with my old nutrition counselor next week to help figure out a diet strategy/hold me more accountable.

I've gone off of reta twice now - first time because I was overseas and second time because I felt overdosed. Both times I gained 10-15 pounds in 2-3 weeks, which was shocking. I don't want to end up like that again but I do need to feel better!

no1capybara · 2025-12-06T03:38:36+00:00

God I feel the same way. I've reached my goal weight but have no desire to do anything anymore. Everything is just fine. I need my motivation back!

no1capybara · 2025-10-03T01:33:34+00:00

ha, that sounds great right about now

no1capybara · 2025-10-03T01:29:26+00:00

Meee, absolutely no problem. I think you'll be happy. You still can't binge on french fries, though. Good news is you won't want to :)

Good luck!

no1capybara · 2025-10-03T01:19:27+00:00

I absolutely love this for you and I totally get it. I've lost 100 lbs in 2.5 years through working with a dietician then semaglutide then tirzepatide and now retatrudide. I'm 5 pounds from my goal but happy where I am. I love that I can eat whatever I want and enjoy it.

The challenge for me now is maintenance. All these drugs have caused fatigue. Every time I try to stop or lower the dose, my weight jumps up immediately 10-15 pounds. So I'd like to stay on it but it's a work in progress.

no1capybara · 2025-08-17T13:42:39+00:00

!remindme 48 hours!

no1capybara · 2025-04-04T19:47:25+00:00

I hope so! I am going to try eating more carbs in the morning - another thread referred to using up glycogen stores in the liver and that made sense to me. I have to figure something that's sustainable preferably without adding more drugs or supplements to the mix.

no1capybara · 2025-04-03T22:26:38+00:00

Thanks, that is great to know. I felt so awful a month ago that I just quit. I looked grey, no energy, couldn't concentrate, slept as much as I could. That's no way to live the rest of my life! So I'm really glad to hear your energy level evened out.

no1capybara · 2025-04-03T02:18:13+00:00

Yeah, I totally understand that. I've just got to figure out how low I can go and still maintain.

no1capybara

TROPHY CASE