I don't have personal experience with this, sorry. :(

But are you near any academic medical centers who might have a good hematology/oncology department?? It sounds like you need some expert help and the academic physicians may have more knowledge on rare reactions to phlebotomy.

A lot of times with the bigger academic centers they'll have you send records before scheduling, so you'll have an idea of whether someone there can take your case and help you. Might be worth a long-ish drive to get some answers. Good luck!!

We have a Blood Disorder in common. I have a Factor VIII Clotting/Bleeding Disorder. I have to be very careful as my blood does not produce enough of the Factor VIII that I need for it to clot on its own. So before I have Surgeries or Procedures I have to get transfusions to make sure I don't hemorrhage, which I've done several times and its not a lot of fun.

In December I had to do a 6 week Chemo Run and it took it's toll on my Blood Factors so I had to get Transfusions 4 times between Dec. and February. I didn't feel completely back up to myself until the end of February, but its' been like this my whole life, so I guess I've just gotten used to it.

I've never had a set amount of days that I feel bad, like you do. Do you have a Directed Donor for your Phlebotomies or do you do general blood-bank donors? I wonder if that would make a difference in how you felt afterwards? The most sick I ever feel is just some nausea for a day and a slight headache that day. But by the next day I feel much better.

I have a set Directed Donor, because I have a rare blood type, so I only get transfusions from my Donor, who is a dear friend and donates monthly so that I have platelets and blood on hand. He's the only one I get transfusions from, unless there was just some type of an emergency.

Have you ever checked into getting a Direct Donor?

Kat

My sister's long time boyfriend also has too much iron in his blood. He was told to donate his blood several times a year. So that's what he does...and he gets tested to make sure his levels are in check. But he's never had the fogginess that you described. So sorry to hear about your troubles.

Yvette,

How does he donate blood with a blood disease? Does he just have an elevated iron level or does he have a Diagnosed Blood Disease? If so, he shouldn't be able to donate his blood....

Sorry, I misunderstood. I only briefly skimmed. I thought she meant that she had high iron levels so she had to have lower it via phlebotomy. My sister's boyfriend has high iron levels which can get dangerous so was given the choice to either donate blood often, or go to the doctors and have blood removed via phlebotomy. I figured it was the same thing. Sorry if it is different.

@Imlosingit, another thing that just occurred to me-- when is the last time you had comprehensive blood work? I can see where the IV fluids would be a good idea from a BP perspective, but it's possible that you are borderline deficient in other essential things such as magnesium- so when they do phlebotomy, your levels drop even more, and you feel awful. Could you ask your PCP to add some thorough labs to your next phleb session?

OMG thank you cooltonepaints! I just came up with that idea after talking with someone who’s son has diabetes and can’t always get insulin so goes into ketone something. I had to look it up. And when I did I saw it was because of low level of one thing was now creating an even lower level of something else.
I know my protein levels are always on the low end of the scale as well with a few other items. I don’t know the relationship between them, but I was thinking taking my blood could push some into deficiency mode. Thank you I knew I couldn’t be the only one to think this. It will be interesting to find out. Only bad thing is, I’ll have to have another phlebotomy

@imlosingit keep us updated!! There are many things that can make you feel crappy when deficient: magnesium, vitamin B, protein levels. It stinks you have to get another draw to figure it out, but maybe you'll get some answers! Taking a mag supplement is much better than feeling awful

@cooltonepaints I already take extra mag, multivitamins, etc. Via my PCP office’s online, “MyChart”, I can go in and look at my blood test results. So I went back in time as far as it would let me. It looks like I run at the low end of the scale on several “items”. Quite a few have to do with the immune system. I got lost in the medical terms, and tired of looking them all up. I just made a list of all the ones that were at or near the low end of the range. They would have to do separate testing to check my mineral/vitamin levels. My Potassium and the mean platelet count appear to be hanging out around the low end of the scale. Blood glucose,random also. Note: these are fasting levels taken for my physicals. So I don’t know how much of a difference that makes. Did notice that anything with “globulins” in it was on the higher end of the scale. Will be interesting to see what my hematologist thinks of our plan.

Somewhat disappointed with doc visit. She said she couldn’t see why, any of the blood levels that are low could be causing the problems I have after the phlebotomy. She said she could see where I was going with this, and is willing to try my idea of testing my blood 2 days after my next phlebotomy. Which will be in 3 months. She also thinks that maybe my PCP could help? She said, no one else has any theories, so this is better than nothing. I really thought I was on to something. Oh well, Back to the drawing board.
If anyone else has anymore ideas, I’m still interested.

I don't mean to disagree with your doctor, but certain things can be "normal", as in on the low end of normal, and still cause issues. For example, magnesium and vitamin B are two that come to mind that can be on the low end of the normal range and still affect everything from nerves to muscles to brain function.

See here for some good magnesium info: https://draxe.com/9-signs-magnesium-deficiency/

So maybe optimizing your levels even if they aren't technically low might be something to try leading up to your next phleb session?

I am sorry to read that you are having so much trouble with your phlebotomies, but if you read the Hemochromatosis Board here on DS you will find that many people have a lot of problems getting their ferritin levels down to safe limits with phlebotomies. (You may want to copy & paste your post over there.)

First, the magnesium issue mentioned. IMO, if you are not taking a magnesium supplement then you are deficient, iron issues or not. Very difficult to get enough magnesium throughout the day with food only. Also, as I understand it, blood testing for magnesium is not that reliable.

Now for the iron/ferritin issues. (BTW - - For those readers that may not be familiar with hemochromatosis, iron level and ferritin level are two different things. Hemochromatosis is typically, but not always, a genetic disorder and "ferritin" is a marker in the blood that indicates that your body is storing iron in many organs of your body which is called "hemochromatosis". It has nothing to to with actual iron in your blood. For example I have iron overload, or hemochromatosis, and all my "iron" related tests are well within normal.) The only way to reduce the iron that is being stored is with blood donations, many blood donations,

I just was diagnosed with hemochromatosis a few weeks ago and I have the genetic version, but not the worse form (apparently there are different genetic versions that can cause iron overload. However, based on my experience with multiple doctors, there seems to be disagreement on this).

Anyway, I had four phlebotomies in three weeks that took my ferritin level from over 600 down to 250, which is within the high normal range. However, my doctor wants it down to about 50, but I can slow the blood draining down to every four weeks until that level is reached. So far, I have had five blood donations (much better name than "phlebotomy" IMO and they are the same thing). As long as a donor's RBC is 39% or above then the donation is good to go into the blood donation system (assuming no other medical issues). If the RBC goes below 39% then the blood center has to toss the blood (also a doctor's Rx is required for the blood center to even allow a blood draw). Even after 5 donations in about 4 weeks my RBC stayed above the 39% cutoff.

The only side effect that I have noticed of the donations is that I sleep better the night after a donation and that is it. I do load up on water both before and after the donation, but actually I drink a lot of water anyway so really not much more than usual.

I really do not know what could be causing your problems. If you post over on the Hemochromatosis Board you may get some different ideas than here on the Chronic Pain Board (although there a lot of medical experts here (I am not one of them LOL). I hope you find an answer because as I am sure that as you well know, having high ferritin levels is something that has to be corrected.

Sptrout, sorry to hear that you have hemochromatosis. It’s not a horrible thing to have, unless you don’t get treated for it. And 99.9% of which do get treated don’t seem to have any problems with blood letting. My brother and sister don’t. We have the hereditary type. 3 out of the 5 of us got it, the other 2 are fine.
And I didn’t know there was a hemochromatosis site here. I’ll have to go check in.
Well, I had a chance to talk with a nurse today at my nieces husbands birthday party. (She’s his aunt, from Ohio) She told me the component levels in your blood, don’t change just because you take some out. They are what they are. I’m not 100% sure about that, cuz why else would you have to fast before you get your blood tested, for your yearly physical? Granted not all blood tests require fasting. Such as iron testing.
I’m still going to see if it changes, next draw.
My sister had a different thought when I mentioned that I don’t start feeling bad (extreme fatigue, unable to concentrate, basic brain fog on steroids) until about a day and a half after the draw. She thinks it might have something to do with what’s going on in my body, now that it has to start making the new blood, to make up for what was taken. The “aunt nurse” didn’t have much to say on that, other than your bone marrow and spleen are involved. So I have one more theory.
And sptrout, your ferritin level is not the only level that is important for your doctors to keep an eye on. Iron Saturation and binding capacity, as well as the iron, are important. Last test, my ferritin level was 46,