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.

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Random Spike in Iron?!

ReverseVampire
ReverseVampire

Hello everyone,


I recently took about 3-4 weeks in between phlebs (rather than my usual every other week) and when I went back to the doc my levels had more than doubled and now I'm doing weekly blood letting. Doc said maybe it's because I was sick during that break and inflammation increased my ferritin? It took almost 5 months to get my levels down and in less than 1 month I'm right back where I started! Has anyone else experienced this kind of relapse? Did the doc say why?

Brinski
Brinski
Your Iron levels can increase if you are unwell. One step forward 2 steps back.. It took 18 months for my levels to get to normal range. I am now on maintenance but my Dr has me on Pariet Tablets as it has been reported that they absorb Iron from the gut. It is now 5 months since I had my last venesection and am not due to test iron until early march. If it has increase over 100 I will have a venesection. To keep it under control. However the last blood test, levels had only increased 10 points.
sion10
sion10
hello mate yes iv just had a recent spike in ferritin, been doing venesection weekly or fortnightly since January 2017 and it had been coming down progressively too..had a break in august as I felt better than in a long time..had a great holiday.!! full of energy, then started crashing again in terms of energy and aches came back and I was back in for weekly venesection..and continued until recently when I had expected it to be around 250 points and it had shot up to 500 again...which is really disheartening as I hadn't been told of the possibility of this happening..my docs havnt exactly been brilliant...nurses at venesection have been wonderful in helping me conquer phobia of needles, which was pretty debilitating for first few months really. at least....but yeah its really annoying but in long run it could be so much worse.. but anyone living with chronic muscle aches and such fatigue that im unable to keep my gardening business going...so to get energy bck will be main thing....inflammation will be a big factor in your spike i think but also diet and how to lessen absorbtion from foods, I only drink tea or milk with meals (if I remember to
o) leave it for an hour or so before having beer,,but that maybe not long enough I don't know...hope all goes well bud..take care...sion
ReverseVampire
ReverseVampire
Hi there, I just now saw these replies for some reason! I just wanted to say thanks to both of you for sharing. I went on weekly phlebs for a bit after that spike and then my hemoglobin was too low to keep it up.... But now I am back to bi-weekly and I am feeling pretty good again. My levels are the lowest they've been since my diagnosis and it's definitely showing in my energy levels and brain clarity. I am feeling pretty hopeful overall and I appreciate the support I've found within this group :) Best of luck to both of you! I hope you're able to get back to gardening soon Sion!