Have found the forum most useful.
Second blood test shows my Iron levels at 451 ug/l and some of my bloods (Haemaglobin, WB, RB, Haematocrit, Neutrophil) have come back as above range.
I've had high (ish) iron levels since 2012 although back then, these were within range
Gene tests for HH are negative. My GP has suggested I go off and give blood and to have blood tests again in a couple of months. Hmmm
I'm a bit lost as what to make of this - I'm inclined to get a second option first up, can I check if others found this approach pretty much standard?
any wisdom appreciated, thanks in advance
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
Lorraine, that’s a really speedy and helpful reply, thank you so much.
My GP gave me a definitive “you don’t have HH” today yet he can’t explain the high iron levels which as you say is a good indication of HH.
He instead suggested I have polythycemia. Agree he’s hedging his bets. I know he’s a budget leader so I suspect if I see him in April in the new financial year, I may find we go in another direction. Will post up as and when I know more.
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.
Hello there, a big thank you for the reply and thoughts here, keep up your great work.
bill
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
darn the fat fingers...my iron levels were too high
The plot thickens
Give 3 pints of blood 3 months apart and should get you down to normal safe range, within a yr.
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.
If your doc said you did not have HH tell them you dont .
Hi Angus
thanks for for sharing those thoughts. Since my last post my new GP got me run more tests, my iron has jumped up in a month to 563 (up nearly 100 points in the space of a month)
Needless to say am back at docs shortly and we’ll see what transpires
with best wishes
bill
if you are negative for HH and your high in climbing as it is this tends to show you have an illness/disease.
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
Hello
thanks for the reply; agree 101% and new doc has been in touch with Haematology, I now understand why GP's are called 'general' practitioners...
best wishes
Bill
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.
Interesting. During the 9 years of obvious HH symptoms but no diagnosis - my gp in denial, and it was pre google - my teeth went dark grey overnight.
Once I was diagnosed and learnt a lot about HH, I came to the conclusion that iron had deposited in the pulp of my teeth, making my once white teeth grey. An orthodontist who knew about HH confirmed that was what had happened. My iron was in my blood getting caught up in the tooth pulp, and yours is in the saliva.
Sorry about the following comparison example but I have seen porcelain/ceramic toilets get a black ring at water level and above under the shelf from a lot of iron in town water.
If you have been cleared of having HH (genetic test), then it is from your diet like you suspect. It is almost like someone taking iron supplements they do not need. The blood donations are a good idea - do you have one at least every 3 months?
Try having calcium supplements when you eat liver. Calcium is supposed to reduce the uptake of iron. And avoid Vit C juices and supplements when you are eating. Tea and coffee taken with meals is also supposed to help reduce the uptake of iron, but calcium is more a sure bet.
I have not done genetic testing and I'm sure it is not genetic as I never had iron overload in the past by looking at previous blood tests. I had numerous health issues such as underweight, migraines, digestion issues, general tiredness, etc. And then I discovered raw liver, other organs, and meat in general. About 90% of my issues are gone and that's the reason I don't want to give up meat. I only donated blood twice. Last time was 3 weeks ago. I'm going to do ferritin test later this week to see how much it dropped so it'll give me an idea when to donate again.
It is difficult to manage/control ferritin levels ad hoc. They go up and down for all sorts of reasons. People without HH donate every three months without problems. Are you allowed to donate more often than that? Keep an eye on your Hb because if it becomes low, donating is a problem. Good luck with it.
It is not because you are negative for HH that you do not have haemochromatosis. You are just negative for the ( known ) hereditary version(s). I also have high ferritine levels and saturation and I also tested negative on HH. It also not diet related. My specialist told me that I could still have a genetic form of haemochromatosis. Keep in mind that you can also have elevated levels of ferritine because of infections or some auto-immune diseases. If your doctor ruled out these external causes, the treatment is just the same. Venesections until you are within range and regular follow-up when you are in the maintenance mode. Well, this is the protocol anyway here in Belgium and I think also in Holland.
I just did another blood test and ferritin is 227. That's after 4 weeks of donating blood. I'll try to test it again in 6-8 weeks without changing my diet much.
Hi there and thank you for the reply. I completely agree with your thoughts.
I have found this this source below very useful to help understand the numerous forms of haemochromatosis;
https://aasldpubs.onlinelibrary.wiley.com/doi/full/10.1002/hep.20007i
I would be interested to hear if anyone here in the UK has managed to get tested for Ferraportin disease, please share if you have!