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I think ferritin is the main marker for iron overload Jason but it is also a marker of inflammation... I have high ferritin about 400 saturation 60% but since I don't have hemochromotisis he says it is part of ME inflammation process that he commonly sees in patients... but I never see people talk about high ferritin or saturation on forums-- maybe should do a pollHi all,
I wonder which lab tests are adviced to determine an iron overload and/or iron toxicity?
I have the symptoms of iron toxicity and my iron saturation is high (51%).
But my ferritin is good; 120 ug/L (range: 0 - 250).
Thanks.
If you don't have haemochromatosis and repeat iron panels keep on being high you know you'll have to look elsewhere for an explanation, such as inflammation.
The only symptom I get is sore knees in the week or two before I'm due for a venesection. A couple of days after the venesection the knees are fine again. I don't know why the doctors insist on taking blood tests to check my iron levels, I can tell them exactly what they are just going by my knees, haven't been wrong in years with my predictionsBoth of your levels are much higher, do you both also have the corresponding symptoms? (weight loss, joint pain, fatigue etc)
This is not the case. You may just have a milder form of hemochromatosis than those who have more of those SNPs.I have checked my 23andme results and I don't have the genetic form.
HFE C282Y: -/-
HFE H63D: +/-7
I am heterozygous for HFE which indicates no problems for me, but there is a change I can give it to my children.
The only symptom I get is sore knees in the week or two before I'm due for a venesection. A couple of days after the venesection the knees are fine again. I don't know why the doctors insist on taking blood tests to check my iron levels, I can tell them exactly what they are just going by my knees, haven't been wrong in years with my predictions
This is not the case. You may just have a milder form of hemochromatosis than those who have more of those SNPs.
Having an iron panel done every 2-3 months would be helpful. Your saturation is high.
Having iron overload can eventually damage your organs. More pertinently, it can feed common ME/CFS infections. My ME/CFS specialist encouraged ME to get my iron levels down.
And, not to scare you, but high serum ferritin can also be a marker of cancer. My doctors checked me very carefully for a cancer recurrence when my serum ferritin level was over 600.
The attached may be helpful to you.
The only thing I know of is venesection, and since you don't have a haemochromatosis diagnosis you may find it a struggle to get those.I do wonder if I can do something about that high iron saturation?
The documents I shared go through a number of scenarios, including iron overload with anemia.
Good luck!
Agree with @Learner1 : you don't want to ignore high iron levels, they really can do damage.
Before you panic, tests can fluctuate a bit, so don't freak out because of a single out-of-range result - but do monitor regularly.
There's a lot of disagreement about what constitutes dangerously high transferrin saturation levels as these two documents demonstrate. The first claims that anything under 75% is probably ok, the second states that there are problems above 50%. I recall a third document that I can't find anymore giving an even lower level, 45% by memory.
http://asheducationbook.hematologylibrary.org/content/2006/1/36.full
https://www.sciencedirect.com/science/article/pii/S1542356517300563
This sort of discrepancy leads to a lot of this for us patients:
My own haematologist prefers to err on the lower side because of my ME.
The only thing I know of is venesection, and since you don't have a haemochromatosis diagnosis you may find it a struggle to get those.
For most people venesections will lower both the iron and the saturation. And although your own iron levels are normal they are high enough to lose a little without becoming anaemic so it could be worth a try if your doctor agrees. Of course your levels may be due to something else altogether and venesections would be counter-indicated. The usual: discuss with doctor.
And please, please, please, don't try to get around the doctor and become a blood donor. You do not want to give your blood - and potentially ME - to any other poor soul. When I have venesections my blood is destroyed as hazardous material.
Note the "consider rare HFE mutations". I'm not HFE C282Y homozygous, nor are you. My docs decided against the liver biopsy and have been running the full iron panel with the tests you mentioned to monitor me. The ferritin hasn't always been in line with the rest of the iron panel... something to do with a lag in how the iron is being shuffled around.Found this interesting photo in the documents you have shared: