Negative for HH but iron levels at 451 ug/l

Hi Billy

Well as long as your Hg doesn't drop, it can't hurt to do a couple of venesections and get them to test everything after two or three times.  I think it sounds like you GP is hedging his bets!  I haven't seen anyone on the forum saying that their GP suggested going to give blood as a way of working out whether or not you have Haemochromotosis - its usually yes or no.  If your ferritin levels are high its usually a pretty good indication!  Sounds like your GP is doing process of elimination!  I'd go and give the blood - make sure they use what they take to test you for every blood test known to man - and then get your GP to give you a decision and/or take your results elsewhere for a second opinion!

All the best

Lorraine

Hi Billy - well good luck!  There are lots of people on this forum who are very knowledgeable (I've learned so much) - so if you need to know more in April, I definitely suggest you keep posting your queries.  Hope all goes well for you!

Lorraine

You already say your gene tests for HH are negative.  And yes, it won't hurt you to go donate blood, in fact, it is usually good for you.  He is not trying to find out if you have HH by suggesting you go donate blood - that has already been disproven.  But he may get a better picture of what is happening with you after donating blood.

In my experience, it is often suggested that people go donate blood whether their iron levels are high or not and I have come across a lot of instances where ferritin is high but gene tests are negative and given that you don't have any other issues that prevent you from donating blood that is often the suggestion.

(I am a volunteer advocate for a haemochromatosis organisation, ran a support group where I talked to a lot of people about it, plus telephone queries, and attend conferences where the best HH researchers are keynote speakers.  I talk to a lot of drs about it, and I was diagnosed with it 20 years ago after suffering with severe symptoms for 9 years until my hips broke up from it.  My husband and son also have it.)

A fatty liver is often the cause of high ferritin - diagnosed by a CT scan - not bloods.  There are many other causes as well.  As it is not HH - then ask him to run more tests to find out what it is.

Good luck with it.

Update - went along to the NHS blood donation centre today having signed up to be a blood donor online not long after my last post. Completed all the new donor paperwork and as a courtesy showed the lead nurse my test results.

Forum rules probably prohibit me from sharing her exact words, but in short the blood donation team wouldn't allow me to donate..."as my iron levels were too and on par with HH" I was told! 

Needless to say I have spoken to another GP today who is referring me for further iron and JAK 2 gene test. The thickens (like my blood!)

Bill

Some times you can have half of the gene and your body can store Iron little faster but not at rate of true HH .

So it might have came back NEG for HH but you could have one faulty gene they always go on 2 genes for HH.

then just give blood every 6 months. You should be fine.

I hope your GP is testing function of things like your Liver/Kidneys also the likes of Thyroid.

In this case you should also of been forwarded to Haematology clinic

Hi, I too have high ferritin above 600, and nothing else stands out and no symptoms of any kind except cosmetic teeth stains.  That's how I found out I have high ferrtin.  My teeth started getting black stains and google suggested it could be iron so I did blood test and there is was.  I donated blood twice already and right after ferritin levels drop to within high range but then it quickly goes back up.  I used to eat a lot of raw liver in the past years but now eat it every two months or so.  I still eat raw meat (not walmart meat, I butcher my own meat) about 5 times a week as I feel the best on it and not ready to give it up.  So for now I'll just keep donating.  Go to a different blood donation center and do not tell them anything about your blood test results.

So obviously my saliva is saturated with iron and that's what gives me stains.  I'm curious how do you have the same or not?  It would be so much easier to test saliva for iron but I have not found cheap saliva test yet.