No diagnosis, while SF at 1566!??!

[ironman2]

Hi all,

OK so here's an update. I saw a specialist and he said we would NOT being doing any blood letting. Just keep on top of diet and exercise and monitor it over 6 moths.

In the last weeks my levels have dropped consistently .... to 1,200 .... and then most recently 950. This makes me feel confident that I'm on the right path, but it also makes me wonder:

What caused it to get to 1566 in the first place?

I have always watched what I eat. While I'm no saint, I do try to include some exercise in my life, too. And what I'm doing now is avoiding foods with a lot of saturated fat, but nothing much more than that - I have been super busy in the last 6 weeks so haven't done more exercise than usual.

We have a nice old french cast iron cooking skillet which I have put away for good. Could that have been the source of the iron overload?

Thanks for any advice....

Cheers,
Ironman-the-sequel.

[ironman2]

Thanks, Droflack,

I might check out memberships and booklets once I get my latest set of results back.

Since my last post I have gone for 2 extra tests (blood test/ultrasound) and also seen that haematologist. He also agreed that the 3 known HH genes may not be the only ones -- more could be discovered. But it is early days for me.

You guessed right: I only just found out that I'm an 'ironman'. In fact, I only got a bunch of blood tests because I figured (having not been to the doctor in a really long time) I should get checked for diabetes (family history). The blood sugars came back with good numbers, but the iron was way up.

I haven't got the 'official' results yet, but the ultrasound guy seemed to think my liver didn't look fatty or fibrosis-y (if that's a word).

I have to wait to see what the continuing trend of my iron is (1 month, I think) before I start getting the blood taken. I used to be a donor about 10 years ago (should have kept it up!) and have never had a problem giving blood. Thank goodness.

Thanks again,
Ironman-II

By the way: I have quite a bit of paperwork for this now (receipts, test results, referral letters, etc) so I have started a folder. I couldn't resist putting an iron-man logo on the front. Check out the latest MAD magazine with ironman eating from a pack of nutri-grain. Well, I think it is funny.

[droflack]

Hi Ironman2
Sounds as though you have only just become aware of your high iron levels.  Do you have the booklet published by the Haemochromatosis Society Australia (HSA)?  50+ pages, it comes as part of the membership.
I found it very helpful.... The booklet says something like:   there are recorded cases of persons with iron overload who do not have the most usual genes ie C282Y H63D or S65C, and without other illness, who still develop iron overload.  If no other cause is found for iron overload, then the treatment is the same as for genetic haemochromatosis.   
so there must be other people like you, it seems.   
Good luck with your tests, let us know how you go - sounds as though you may become a blood donor!

[ironman2]

Hi all,

Glad to have such a great forum here. 

Anyhoo... I had a recent blood test and got a level of 1566. The doctor said "Ah, you'll have HH, no doubt, I'll get the tests done."

Today I find out that the genes for HH have come back normal. Normal!

I don't feel particularly bad/tired, but 1566? That's gotta be pretty high, yes? Even the doctor's notes had an exclamation mark in them after the reading. Both doctors I have been working with can't understand how I got that reading without the related HH genes.

Anyway, I was talking to a paediatrician today on another topic and mentioned my new 'mystery' of iron overload without HH. He said that Cystic Fibrosis started with only a few indicator genes back in the late 80s and now there are over 1,000 genes which can be checked for that one condition. He wondered if I might have some other type/form of HH for which genes have not yet been scientifically linked. Is that possible? I am of very 'Scottish' background, which puts me in the right Celtic background.

My brother has all the signs of HH, too -- he was told by his last doctor he might be having too much alcohol due to his high SF and poor liver function... even though he used to abstain completely and doesn't even have a second beer or wine at Christmas time. His symptoms are: liver is not so great, his skin is 'bronze' and he has tinnitus.

So high SF and no HH...

Could I have poisoned myself with some unknown source of iron?

Could the 'other related genes' hypothesis be valid?

Confused. Looking for any help/tips out there....?

In the mean time I'm off to a blood specialist tomorrow for more prodding and poking. I'll report back on the next piece of the puzzle.

Thanks! 

[P.S. I feel lucky because (a) I don't feel that bad at all -- feeling in good health, in fact and (b) I have never really had a problem with needles/blood giving. Still worried about that SF level, though]