MY FERRITIN LEVELS ARE HIGH AND I AM NOW HAVING V/SECTION I AM NOW ON TO MY 4th BUT MY LEVELS HAVE RISEN ANYONE ELSE HAD THIS
Hi Mark, yeah, absolutely nothing to worry about at all. I’ve been venesecting for over two years now and have seen my ferretin levels jump up’n’down a number of times. I think it happens to most folk for some reason. As long as the longer-term general trend is down the way you’ll be fine
HI THANKS FOR THE REPLY I AM JUST CONCERNED THAT AFTER 3 IT HASNT CAME DOWN BUT WENT UP FROM 949 TO 2005 AND DONT REALLY KNOW IF THAT IS A BIG INCREASE
That is a big jump. It could be due to some inflammation caused by some infection (even a cold), how is your liver?, alcohol, an injury. If it is caused by one or more of these, your ferritin levels will reduce once the problem goes away.
As a heads up, it helps if you let us know what your HFE gene/s are. It determines how aggressive your haemochromatosis is as not all haemochromatosis is equal, your TS% as well as your ferritin. What were your levels when diagnosed and how long ago.
Are you having weekly venesections? I expect so given your ferritin level of 949.
Let us know how you go.
Mark
Sheryl is right you must have had some infection that skewed the test
It will come down i wish you well with the weekly sessions its a tough regime you must get plenty of rest inbetween sessions
I had about 16 in a row weekly starting at 1200 it came down very slow at first then very fast I was at 38
That was last December and since then i followed SHERYL advice had a few steaks and a few glasses of red again its not good to totally avoid such
Had two ferretin tests since May was 59 AUGUST 68 my new target level has been moved from 50 to 100 so I am very indeed apart from my walking distances being impeded sore hips
you will get there it takes time but keep going you have lots of us out here to keep you motivated
THANKS FOR THE INFO SHERYL I WILL KEEP YOU UPDATED
REGARDS
MARK
HI SHERYL HAD A ULTRASOUND ON MY LIVER TONIGHT THEY SAID IT LOOKED FINE
REGARDS
MARK
That’s good, it eliminates a more serious inflammation. Anything else happening with you?
I HAVE A FIBRO SCAN IN A COUPLE OF WEEKS AND I HAVE JUST HAD A DEXA SCAN ABOUT 3 WEEKS AGO OTHER THAN THAT NOTHING
REGARDS
MARK
No pain or anything? A fibro scan seems to indicate you are investigating the cause of pain.
YEAH I HAVE PAIN MAINLY IN MY JOINTS
If your joints are inflamed, that wlll cause your ferritin to increase. But it is still a big increase. Hopefully your next blood test will show a natural reduction. My husband was recommended osteo panadol to help reduce pain and inflammation.
Hi Sheryl been 7 weeks now my level has came down to 543 yet i am still very tired is this the norm
Yes, sorry, some of us still remain fatigued, and some don’t. If your TS% is still high then you may not get any relief until that is <50%.
I still have short days because of this fatigue - at least I am able to function during that time. It became impossible for me to continue working.
I have come across Boron which, among a lot of other things, is reported to be helpful with joint pain caused by a form of arthritis. My husband who is homozygous H63D has complained for years of knee and hip pain - CT showed he was developing arthritis. I gave him the Boron (6 mg capsules) 1/day without telling him what it was for. 2-3 weeks later there was no more complaining and limping. I still haven’t told him what the capsule (among other vitamins and minerals) is for, or he would be saying “it doesn’t work”. I had to get it from a compound chemist.
I take it myself as it is reported to release bound up oestrogen (or testosterone) but I am yet to notice any change - maybe it is making my HRT last longer. Read “Nothing Boring about Boron” for details.
Does your husband have any trouble with dry eyes Sheryl ?
No, it is not a problem that he has. I do, but that could be caused by a number of reasons. I have not heard anyone with haemochromatosis complaining of it, and I have spoken to many people.
However, it is acknowledged that untreated iron overload can damage the retina. Check in with your optomotrist, and let him know you have GH.