Iron Overload

[Ironmaiden1]

Hi all!! Just heard from my doc today and my ferritin is now at 77!! OMG I am soooo happy! He wants to do two more phlebs then on to maintenance, I feel fantastic and can't wait to live again! Yahoo!!!

[newone]

Thats good to hear that you are almost there. Can't wait for myself to get there. Last test for me was 455 ferritin but my hemoglobin was 131 and hematocrit was .390. My doc didn't want to do the phleb last week because of this so I missed it. The specialist in Calgary says that my levels for hemoglobin and hematocrit can go to 100 and .330 if I can handle it. So I am back at it again today. Really been tired at 4pm all the time now though. Could nod off to sleep then with no problem at all except I'am still at work LOL. I'am hoping just another month or so and on to maintenance too! Were you able to keep getting phelbs till you got to your level now or did you have to take breaks to get your hemoglobin count up? Just wondering what other folks had to do. Take Care

[Ironmaiden1]

Hey newone,

Since that last post that you replied to, I am now in maintenance. I had two phlebs after that post and I am in my second week of maintenance. My ferritin at that point was 49, TSAT 39%...everything else was in normal range as well. I would of done one more phleb but my Hg was down to 11.3 and my doc wouldn't do it, so be careful with that. I have an appt for the 25th of this month to have blood work done, so we'll see what happens with the numbers. I'm excited and nervous, I'm enjoying the break and afraid of finding out that I have to phleb frequently.

LOL! I can understand the fatigue, it hits me when I'm either driving or at work or doing something that requires my full attention....not a good thing LOL!

[Ironmaiden1]

Well I've just had my blood work results after 3 weeks of maintenance, they are as follows:

Ferritin - 55
TIBC - 39
TSAT - 67%
Hg - 139

I am worried now, my TSAT has risen substantially in the 3 weeks of maintenance. I am scheduled for a phleb this coming monday then follow up blood work the week after. I didn't watch what I ate in the entire 3 weeks and just lived normally. I did however ingest a lot of red meat and was still smoking :-/ I'm going to try and eliminate the red meat and cigarettes and see if it makes a difference. Any input would be appreciated, this is scaring me now:-/ Thanks in advance!

[Michael NZ]

Hello Ironmaiden,
Enjoy life, that is what we are put here on earth for. An extra phleb every now and again makes life so much more enjoyable.
If you find the full unit is uncomfortable, do half a unit twice as often and make life pleasant for yourself.
It has to be done, there is no way out of it, so I do a little bit weekly as part of my weekend chores and give high praise to my wife everytime it goes satisfactorily (99.9999% of the time).
Regards Michael

[Ironmaiden1]

Thanks Michael, I agree with you on enjoying life...it just gets frustrating at times. I just finally had myself on an exercise routine etc., I'm more worried about the frequency of phlebs than anything else, I am hoping to be one of the lucky ones that only has to go every 3 months or so. So this little spike in TSAT has me worried that it will be every 3 weeks. Someone else was mentioning that I might not have been completely de-ironed (maintenance wise) and that there is still iron leeching out of my tissues etc, which makes sense to me as I wanted my ferritin lower than 49 but my Hg wouldn't allow for another phleb. Thank you for your advice and if I do have to have more frequent phlebs, splitting them up is a good idea...at least I would have some energy to get things done:-) Have a great weekend!

[newone]

Hello, Just have a few questions about my phelps. I have been getting 500 to 600ml of blood taken out weekly since about Dec 16th and only missed one week. My last blood test was Mar 22 and my levels were Hemoglobin - 131, hematocrite .380, iron binding capacity 38, iron sat .39 and ferritin 384. My Red blood cell count was low too at 3.84. My question is did you guys slow down the amount taken out as you got closer to the normal ferritin levels or miss phelps. I find the last couple of days I have been really tired and out of breath lots when doing somethings but I really want to get my ferritin levels down. My doc says we might have to miss some phelps but I thought tonight maybe I could just take less out next time but on the other hand I want to get to the maintenance stage fast too . Just wondering what you did. Any feed back would be appreciated. Thanks

[suzwilson]

I am interested in answers to your question as well. I am getting close too. My ferratin is at 170 but hemaglobin is low. After my last treatment on Thursday, I was in bed for most of friday and Saturday. I felt like total crap. Thinking about going every two weeks but worried that I will start gaining ferratin agian. Anyone out there with opinions would be great. I also think by going every couple of weeks, I can start exercising again and not feel so run down.

[Ironmaiden1]

Hey Suz and newone, sorry it took me so long to reply. For me, my doc threw me on a weekly phleb schedule right off the hop and we stuck to it until my Hg wouldn't allow us to phleb anymore. At that point my ferritin was at 49 and everything else was normal aside from the Hg. This worked for me, as far as tolerating the weekly phlebs, we all differ there and some people can't handle the weekly thing. I spoke with one man on another forum that had Ferritin over 8500 ...he was phlebbing 3 times a week, I can't even fathom that! I guess it boils down to what your body will allow, I do know that prepping the body for a phleb is extremely important ex: eating a few hours before, being well hydrated before and after and just basically listening to your body.

Oh and suz, my ferritin only came up 6 points in the three weeks it was my TSAT that almost doubled. Now that my Hg is up I'm going to phleb today and push for one more next week and see what happens....almost there!

[Michael NZ]

Hello Suzwilson & Newone,
As one approaches the de-ironing stage, you should make it a “soft landing”.
Reduce the frequency of the phelbs and/or the amount taken each time depending on how you are coping.
The important thing is to keep up the phlebs, don’t stop. I would suggest taking as little as 150mls each time (weekly).

[Michael NZ]

You cannot rush the de-ironing process, be patient.
In my case, it took two years after I was de-ironed until I finally got all the residual iron out.