High iron

[lmcgill6578]

Hiya, first time posting I've just been told o have very high iron and my doctor has urged to get more test has this happened to anyone worried sick 🙈

Hi, thanks for info.

LFT test was all normal as was FBC.

I have stupidly looked at google which mentions autoimmune conditions and cancer causing this, really worried now.

Cancer doesnt cause autoimmune diseases, please dont look at google
Have you asked your Dr what is the cause of your high iron, and are you having more tests

No, I wasn't thinking cancer was an autoimmune just that the high ferrtin could be that, I know I am jumping to worse case though, my nerves are shot.

Doctor has suggested it could be haemochromatosis but doesnt think it would cause the symptoms I am having so quickly. I have been light headed, nauseous, no energy after minimum activity like taking kids to school just wipes me out. Do you think the symtoms could come on so fast? I am worried it is my liver causing these symptoms although my LFT taken 2 weeks ago was fine. I dont know whether to take myself to A&E, very anxious.

Thanks

Lily please be assured that haemochromotosis is not life threatening if treated as early on at this. A majority of people only have it spotted when their ferritin levels are in their 1000s. At 450 something your liver probably won't yet be showing any ill effects, though chronic fatigue is a typical symptom of the condition.

Your gp is not a specialist in haematology nor genetics, so please do press for genetic testing. Go through another gp if necessary.

My family is affected by this, so please trust my advice, I have been for genetic counselling.

PatchWorkPrunella Thank you so much for the reassurance. I have been to the Dr today and she reassured me that all my other bloods were fine. I have been ill for about 3 weeks now and was worried it may be my liver. I feel woozy, nauseous and my legs are so irritable. I also get wiped out so easily. My Doc couldnt figure out whether the iron would cause this or I have a coincidental virus. Do you think the iron could do this? It is daily and I cant get on with normal routine, feel so weird.

I don't see any signs of it in any of my (quite large) extended family - would it be possible to be the only one??

Also do you know of anything else that could cause such a spike in iron? My iron studies test seem to torally reflect haemochromatosis but could anything else do that? FBC all totally normal.

I have been referred to a gastroenterologist and have the genetic test on Tuesday at the surgery.

Thanks again for reassurance, this is all got my nerves on edge.

I think it is possible that you do have a virus, causing you to feel so ill, i am sure your high iron wont make you feel so bad especially so quickly
RE; your faily not showing any signs of HH they might not know,it is usually only found by having a blood test, and more often than not when someone sees the Dr for some other reason,, i found out by accident when i had a blood test because of my hair thinning, my Dr thought it could be a thyroid problem, and women dont usually find out until after periods stop, when they stop losing iron through losing blood [periods] men often show it earlier because they are not getting rid of iron like women
If it turns out to be HH then your family do need testing too, but it doesnt mean all will have it, some might not and some might be carriers, but its nothing to panic about,

Thank you so much for all the advice. Hopefully in the next week or so I should have some answers. It would be so much easier if I didn't feel so poorly, my legs ache so much and just worn out. Desperate to get back to normal and back to work!

It is reassuring to hear that you don't think symptoms could come on so fast. I think my illness is probably viral then (and probably not helped with the panic and stress!)

I hope you get answers soon, it is terrible to feel so ill, and on top of that so worried about why
Please come back and let us know how you get on[

Thank you, will let you know.

Thanks so much for all the reassurance.

Hi, for anyone that comes across this thread in the future I just wanted to say that I ended up being diagnosed with Haemochromatosis. Pretty freaked out but apparently caught it early as doesn't usually become apparent until 60/70's. I have found the Haemochromatosis UK Facebook group very helpful as having seen 5 different GPs and a consultant they really didn't know much about it. My symptoms came on fast over a matter weeks which I think is unusual but suppose every body acts differently. So just wanted to add this in case it helps anyone. I've just been diagnosed so still getting my head around it and naturally worried but it seems if got it early people seem to say is no big deal and jn fact you are lucky to manage it before it causes a problem.