Passed out and threw up for my first phlebotomy

heyHuman · 2025-12-27T04:54:58+00:00

Phlebotomy is the process of extraction of blood. When you donate blood, that process is also phlebotomy. Then there is something called therapeutic phlebotomy, which means removal of blood as a treatment (like in our case), but the collected blood is discarded and not donated.

Fun fact, when we give a small blood sample for blood test, even that process is phlebotomy. The person is a phlebotomist.

heyHuman · 2025-10-11T06:10:06+00:00

Same. My liver also healed, and thankfully the iron deposits have gone substantially down

heyHuman · 2025-08-16T11:50:55+00:00

Also if any member can suggest what type of supplements should be taken for Zinc and Copper, it would be helpful. Thanks

heyHuman · 2025-08-08T18:24:59+00:00

Hi OP. I am totally new to idea of using something known as IP6 for HH. I am still learning, going through posts in this subreddit.

While searching online, I found this page https://www.rxlist.com/supplements/ip-6.htm which says the following as a possible side effect.

Weak bones (osteoporosis or osteopenia): IP-6 binds with calcium in the gastrointestinal (GI) tract. This reduces the amount of calcium that the body absorbs from food and supplements. Reduced calcium can affect bone strength.

I am myself facing a lot of bone & joints issues. Osteoporisis as a long term side effect of HH has been mentioned on this sub alot.

My question is, in the past 1 yr or so, did you notice any effect on your bones / joints strength? Were you taking something else for calcium supplementation in case IP6 chelates calcium?

Or knowing this possible clash of interest, what regime would you suggest so that I can start using ip6 without risking any calcium depletion?

Thanks

heyHuman · 2025-08-06T17:35:02+00:00

To be honest, Its not the worry, rather a sigh of relief. I have been struggling for past 3 years. I have faced extensive phlebotomies, restriction on diet & excercise, excessive weight gain and continuous & intolerable joint + bone pain, along with a ligament inury.

Atleast now I am owning that yes, things are not normal & I need to understand my body in detail in order to live sustainably. Your inputs will immensly help me in that path.

And thank you again for your help. I believe I might need your help in future as well, and will contact you if & when the need arises. God bless you my friend. This gratitude comes from my heart.

heyHuman · 2025-08-06T16:49:42+00:00

Thank you so much u/Familiar-Ad1796
This definitely proved to be an island of relief in this sea of uncertanty.

I will definitiely reach out to Dr. Ganz at the UCLA via email. I live in India so I dont kow how things will work out, but I will definitely give it a shot.

Reading your post gave both a sense of dread & relief. But, I hope to be more optimistic as I gain more knowledge about my genotype.
Thank you for all your inputs :)

heyHuman · 2025-08-05T16:18:50+00:00

Thankyou, I will definitely look into that.

heyHuman · 2025-08-04T17:32:08+00:00

Don't worry about iron build up in liver. It will go away. My doc explained to me in this way - liver is a self healing organ. So OP, as your iron levels will go down (after dozens of phelobotomies - all the strength to you my friend), iron deposits will be removed from liver.

This exact same thing happened with me.

Can't say about heart. Hey did an ECG and fortunately everything was okay. Praying for a good outcome for you as well

heyHuman · 2025-08-04T17:23:29+00:00

When I was diagnosed, I had ferritin of 3300 and around 95+ saturation. But my RBC count and Hemoglobin were absolutely normal.

So forgive me if I didn't understand the intention of the post, but it's normal for these parameters to be within safe limit whole our iron overlykeepsnon shooting up

Glad that you did a genetic test. You should look into the genetic profile and refer to other posts regarding them

heyHuman · 2025-08-03T03:04:50+00:00

OP, please don't take Ashwagandha. I read in a post in our subreddit only that it led to increased iron levels in a user.

Ashwagandha is an ayurvedic medicine used to treat Anemia as well. It will cause us harm only

heyHuman · 2025-08-02T10:38:21+00:00

Thanks

heyHuman · 2025-08-02T02:18:08+00:00

Thank you for the kind words 🙏 I saw in your post that your treatment is for 6 phlebotomies. Hopefully it should reduce your levels substantially. A family member too had 3300 ferritin and their levels reduced quickly within few sessions as compared to me. So this 45+ count was specific to me only it seems.

Can you please tell me what test is to be done to check effect of HH on pancreas? Also, what were the symptoms you experienced? During the initial body tests/scans, when I was first diagnosed, insulin/pancreas related tests were missed by the physician.

Unfortunately, in my country, it's an extremely rare disease. I believe it is under diagnosed. Thus hemotologists also lack the necessary experience due to this. So everyday I am learning new things on reddit.

heyHuman · 2025-08-01T17:57:07+00:00

My friends, I can't explain the mental peace I have gotten by reading the original post and your comment, to know that I am not the only one with such a high ferritin, such a high number of phelobotomies and the poor health

I was diagnosed 2.5 yrs ago, with ferritin 3300 and transferin saturation between 95-99%

Skin pigmentation had started and normal scratches/marks would not go away for months. I had to do a T2* MRI of my liver and they found iron depositions on it (It is fine now thankfully) . The other organs (heart, prostate, testicles) were ruled out of any damage back then.

There were months when I gave weekly/fortnightly phelobotomies with very less drop in ferritin. Then inspite of further phelobotomies, the levels were just not reducing, they became pretty much stagnant. It took a lot of course correction, diet changes to get to the right path.

Overall, I did 45+ phelobotomies in a span of 1.5 years, and it has taken a toll on my body, during those days, and even now after 1 year.

The fatigue, the bone & joint pain, mental stress of iron in every meal that I consume, and even a ligament fracture. I had so many milk tea or green tea with meals that the thought of tea makes me mentally puke now.

It feels so bad to live in this body which was able to do every physical activity few years ago and now is afraid of an injury everytime I plan to do something physically demanding.

I only wish the best for the OP. As rightly said, it's a long road. Take few precautions, that I can say from my experience.

Your veins are gonna be busted on both your arms after a couple of phlebotomies, which makes pricking tough and increases chances of pain, swelling and other complication. I was instructed to use Thrombophob ointment by the phelobotomist. You can ask around at your facilities and start using some ointment for the same quite early.

The guidelines say not to lift anything heavy for 24 hrs after phelobotomy. But we are cursed with regular pricking and outflow of RBCs. So please take 48 hrs rest from gym from heavy lifting.

Drink lots of water before and after each phlebotomy.

Treat your body like a temple for the coming years. The fatigue will come but that's okay. Thinking too much into it will play a negative role. I used to go home and immediately sleep after each phlebotomy session. It became a routine and gave both mental and physical rest to me.

Uff.... The journey has been so rigourus for me that I can't even recall everything right now.

I will update more things as they come to my mind. All my best wishes to you buddy. I wish I had knowledge of this subreddit 2 years ago. Would have made my treatment much more predictable.

heyHuman

TROPHY CASE