have just had my latest results for the last 3 months and it’s 1,800, it started at 438 then went to 535 then 871 and now three months later 1,800
I have give blood twice, my doctor says it’s probably an I fiction but doesn’t offer any more infor. I’m really worried now as if it’s an infection why doesn’t she give me antibiotics ? Does anyone else on the forum have more info.
My daughter looked it up and said she thinks it’s Hemochromatose but my doctor dismissed it and said it was an infection, do you think she’s right. Thanks
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Sunnyv
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I think there’s a fair chance your daughter is on to something with haemochromatosis. Levels >1000 should definitely be investigated further—infections don’t usually cause quite such high levels and the fact your ferritin levels have bounced up again so quickly doesn’t quite add up, does it?
Is there another GP in your surgery you can see? With haemochromatosis it can take repeated testing to find out for sure, so it’s surprising that your GP has ruled it out so early.
A referral to a specialist might be in order. But I’d start with trying to see a different doctor, if only to get some reassurance that you don’t need to worry. Sorry it’s such a battle to get answers.
Did you doctor do any other tests? Do you know, for example, if a transferrin saturation test was done? Or were you simply sent to have some blood taken?
I don't think your doctor is doing his/her job by just "guessing" that you have an infection and then leaving you to rot. Very high levels of ferritin can lead to permanent liver damage. It is also true (I think) that liver damage can lead to high levels of ferritin.
Some good sources of information on raised ferritin and haemochromatosis are :
My Ferritin levels started going up after given Teva Levothyroxine I also had mild liver irritation this is only two of the numerous things that went wrong after being given Teva antibodies went into the thousands.
I have haemochromatosis as well as Hashi's. I was referred to a gastroenterologist with raised liver enzymes. My GP suspected haemo but didn't do a full iron panel blood test. The gastro dismissed the GPs suspicions and said my ferritin wasn't high enough for me to have haemo and refused to test my blood.This was years ago and I didn't know about private blood testing back then.
I sent off for a DNA kit which proved that I have got haemochromatosis.
Giving blood as often as they will let you is a very good idea. Do not take vitamin C as this aids the absorption of iron. Drinking tea with meals also helps as the tannin seems to also help stop iron being absorbed.
I take a natural iron chelator every morning called IP6.
You must get full iron panel blood test. Only then will you know what you are up against.
I was refused treatment because my iron % saturation was never higher than 55% (48% should warrant investigation ) and my ferritin never exceeded 479.
I am unable to donate blood due to a suspected angina attack many years ago. It wasn't but they still won't let me give blood.
If you do have haemo (you MUST get full iron panel blood tests to find out) the treatment is simple. Venesection.
As SeasideSusie says, CRP and ESR also need testing to rule out ( or confirm ), inflammation/infection.
Thank you very interesting, saw the doc this morning and she is at last worried getting an appointment with a specialist after I have my blood taken (today). Thanks to everyone on here who has helped me sort it out, at last my doctor has woken up!!
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