Hemochromatosis Support Group
Hemochromatosis is a hereditary disease characterized by improper processing by the body of dietary iron which causes iron to accumulate in a number of body tissues, eventually causing organ dysfunction. It is the main iron overload disorder. Hemochromatosis is notorious for having symptoms that are often initially misattributed to other diseases.
Hello,
I was recently diagnosed with HH in Feb. '14. I'm happy to say that after 4 phlebs my ferritin was reduced to 340 from 750, although my saturation level remains in the mid 80% range. While I've not had any of the common HH-type issues described in this forum, it seems some issues have come up since beginning the phlebotomies. I've had frequent but minor new joint pains in my right thumb and middle finger, ankle and knee. Has anyone experienced new or worsened issues possibly as a result of beginning phlebotomies? Could it be that the reduction of serum ferritin has caused organs to release excess iron into the blood thus causing (helpfully temporary) issues elsewere?
I was recently diagnosed with HH in Feb. '14. I'm happy to say that after 4 phlebs my ferritin was reduced to 340 from 750, although my saturation level remains in the mid 80% range. While I've not had any of the common HH-type issues described in this forum, it seems some issues have come up since beginning the phlebotomies. I've had frequent but minor new joint pains in my right thumb and middle finger, ankle and knee. Has anyone experienced new or worsened issues possibly as a result of beginning phlebotomies? Could it be that the reduction of serum ferritin has caused organs to release excess iron into the blood thus causing (helpfully temporary) issues elsewere?
Have a look at my Entry "First Venesection Today" I have been keeping a running log of my Phlebs and how I feel after them. It may be of help to you.
I have just had my 11th Phleb and I do feel different in so many minor ways. I did have other things affect me after I started the Phlebs such as hand cramps pains in other joints, but my hip pain that was like toothache has all but gon and very rarely affects me, althoughI am still very tired and find walking distances can be difficult.
But I am hoping that this is going to improve once my levels are below 50 and I am put onto a maintenance regime.
I did list out some of the complaints that I had been to the doctors with over the last 5 yeaars and they are all related to HH.
I no longer seem to have symptoms of either IBS or Asthma that I used to have to name a few.
Take care
Regards
Steve
I got my 2nd "progress report" today. After 9 "bloodlettings" my ferritin is down to 71 from 766, transferrin saturation is at 33% relative to 82% and my total iron is at 110 from 248. These are better than I expected with ferritin falling at a rate of 28% from 5th - 9th phleb whereas it fell at a rate if 17% from 1st - 4th. I think maybe two more and I'll be in maintenance mode and shifting to leeches. My ALT, which has been slightly elevated for years, fell from 51 to 31. Nice!
Those phantom pains that I initially wrote about seem to have gone, that is if they were ever there and attributable to HH.
While people who know me would argue that my brain is always in a fog, I was hoping for a marked increase in intelligence once getting my ferritin to this level. No such luck; I'm the same dummy as always! That said, I've got 2 more phlebs to go. Who knows...
Thanks,
James
I am glad that you are feeling better, I think its a slow process, the docs are thinking about putting me on a maintenance regime, and I should also be able to donate blood again.
However my hip pain came back with a vengeance this week, but seems to have eased today again (Thursday), I musty admit to having the same hopes about the brain fog, but like you I am still as dopey as ever.
Take care
Steve
my sister is also HH pos. and went through the phlebs. without batting an eyelid.
I think that you are right about everyone reacting differently and also that the doctors seem to be so in the dark about this condition.
My old male liver doctor seems to be old school and not really very sure about levels that can do damage, I saw him when I was at 700 and he more or less dismissed it and said that we should wait until I was over 1000 before doing anything further, my wife and I insisted on seeing a Haematologist, and I was referred to my young lady haematologist and she was appalled at his ideas and said that I needed to start aggressive weekly treatment straight away.
I have been doing this and am starting to feel so much better, although my walking is still not back to normal, and I tire easily, but I am getting better.
Take Care
Steve
thanks for your reply . i've just read some of your log and the replies . it seems i am not alone in having some adverse reaction to the venesections . at the end of october last year i was taken into hospital because i reacted so badly to fortnightly blood-letting . i was in for 3 months . i too developed unexplained asthma out of the blue years ago along with terrible anxiety problems , i've had the hand and foot pains but not hip . hope some or all of this will go along with the debilitating fatigue .
i am in the uk , wolverhampton .
regards , mike .
It sure is a horrible thing that we share, I feel like I have a time bomb inside me. Its a jog getting other people to understand HH and to take it seriously... I still get comments about eithefr just having been on holiday or do you a sun lamp or is that a fake tan. I just tell them that I am going rusty!!
So many things in my past are now attributable to HH, I am hoping that no new ones surface in the future, although my walking is recent and is still causing me problems even though the hip pain has more or less gone.
Take care
Steve
This is how it works for me; every body may be different.
After I get a phlebotomy--ESPECIALLY when I used to just do Red Cross and they took blood out so FAST!... It's like my body over-reacts and says, "Wow! Need to rebuild lost blood--let's take iron out of storage!!" But it takes TOO MUCH iron out of storage--Raising my Transferrin Saturation level sometimes to 100%!! Since they don't measure above 100%... Who knows HOW MUCH Free Radical Iron is wreaking havoc through my blood stream at that point!! I KNOW this has caused brain damage (the brain fog--plus in my case Central Sleep Apnea--not a collapse of the airway, but rather my BRAIN doesn't TELL my lungs to breathe when I fall asleep!).
Anyway this is a little understood aspect to Hemochromatosis. Transferin Saturation is not Just a diagnostic tool!! High TS levels means FREE RADICAL IRON is wreaking havoc thru your bloodstream...It's considered a POISON when not properly bound (by transferrin) when being transported through the blood--and destroys cells (including brain cells) wherever it goes. Now I'm HOPING that if I ever get my SF down to maintenance range, my brain will start to recover with a low iron diet. (But I'm scared to get phlebotomies so we'll see--I do SLOWLY lower my own Serum Ferritin counts if I stay on a super low iron diet).
Listen, they say not to bother with diet but that's stupid--ESPECIALLY because of TS. Normally I FAST to take TS test. Now theoretically, it's the 100% TS range where you can KNOW all transferrin is saturated and you DEFINITELY HAVE free radical iron in your blood stream. But I read that even when the transferrin is mostly saturated (like 80%), lots of loose bonds are falling off.
Anyway, let's say you have an 80% TS level when fasting. WHAT DO YOU THINK IT IS right after you've eaten a STEAK?! Iron Poisoning. Now... If what happens to me also happens to you after a phlebotomy--you're going to have VARIOUS symptoms because the excess iron in your bloodstream (an overreaction to the phlebotomy) is redepositing in various places--but ALSO is destroying cells randomly EVERYWHERE! I'm convinced this explains a lot of what people are sharing on this post.
The only way to know is if you BLOODTEST your TS later the day of donation or maybe the next morning.
VITAMIN C I've heard does the same thing. I want to start testing this. It not ONLY causes you to absorb more iron from your food--but ALSO somehow effects RELEASE of iron stores--probably elevating TS. I tested this only once so far. Took 1000 mg Vitamin C on an empty stomach during the night; TS test in the morning. Where normally my fasting TS is 63%, that morning it was over 80%. Interesting. So I'm planning to do more "self-testing" soon... A prepaid Transferrin Saturation test is only about $30 at online blood testing sites; just start ordering tests yourself and be your own health advocate. Please share your results and let's help each other! The doctors only pay attention to the stored iron, period.
Wow thank God you got a 2nd opinion! You know I saw several hematologists... surprisingly only ONE gave me your 1st Doctor's bad advice "don't worry if under 1000 SF". Only what was surprising was this was a YOUNG doctor from UCLA! Wow--do they just want the great business they'll get later from treating your organ damage? I would hate to think that's what they are now teaching at some Med schools...
But thank God, most do not take that approach :-)
Long time no post! But with Xmas I have a little free time! :-)
Yes, unfortunately phlebs can and often do make the arthritis worse, ......sigh. I was the same as the OP, I had no joint symptoms until my ferritin had dropped by about 2000! Then came the soreness in the mornings (luckily I'm not too bad)
This is possibly due to cartilage being very sensitive to iron and so when saturation drops (or body decides to move iron) iron is released by the cartilage but it emerge as a free radical (ROS) and thus oxidises causing damage to the surrounding cartilage, I believe.
Ref:
http://rheumatology.oxfordjournals.org/content/early/2010/01/22/rheumatology.kep429.full.pdf
I therefore take a strong antioxident to try and soak up as many of these free radicals as possible, double dosing for a few days after phlebs. However we need more research to confirm this is actually happening. Which I feel helps reduce morning soreness in fingers.
I take
http://www.blackmores.com.au/products/bio-ace-excell
no doubt there is something similar in your countries (preferable without the zinc)
I believe we do need some Vit C as it allows our bodies to transport the iron, only we should not consume in excess or while we are eating iron containing foods, as I;m sure you all know.
(PS. Mega dosing Vit C with high iron is dangerous as it can enable the sudden release of iron from heart muscle, thus causing heart attacks, so do not take high doses until we are in maintenance phase)