Iron blood tests results, I really need help!

[ironhelp]

Can anyone please help.

My doctor seemed baffled and brushed me off.

My blood tests shows my iron storage is fine, but my iron saturation is 70 (should be 15-50)

And in July it was 68 (I was never told)

What does this mean for Me?
I don’t have a high iron diet, and have no health conditions. I’m 33, female.

Any advice is welcome as I really can’t get much from research.

Do you know what your actual ferritin result is? I’d ask your GP to screen you for hereditary haemochromatosis which is a genetic issue with iron handling. It’s very common where I live (Scotland) Untreated it can cause organ damage by iron build up but because women have a much higher need for iron they don’t develop issues usually until menopausal sort of age so don’t panic even if it does turn out to be that. It’s also easily treated by essentially giving blood regularly.
the last youngish woman we saw with it only had a ferritin just above normal (due to period and pregnancy) but he transferrin sats were raised.
best wishes,

Thank you for the reply, that is really helpful.
I don't know what my actual ferritin level is. The doctor said "it's strange that your ferritin is normal and your saturation is so high, and I don't know what that means"

I will ask to be screened for that. I hope they say yes!

In the meantime I don't know what to do. He suggested cutting down on iron foods. I will do that.

I'm wondering if this has happened to anyone else and it has been a particular condition, or a symptom of something else.

Show your GP this article :)
www.bmj.com/rapid-response/2011/11/03/normal-serum-ferritin-does-not-exclude-haemochomatosis

Your GP may be able to test directly or might have to refer you depending on local pathways. Because it’s common here it’s a fairly routine GP test without having to go through clinical genetics clinic for the test but I’m not sure if it’s the same everywhere in UK.

Thank you for this. I actually found a website for a hemochromatosis charity and have ordered a testing kit from them.

Do you know of iron saturation of 70% is something that is immediately dangerous to me ? I can't find the answer to that anywhere.

My sibling’s iron saturation has been above 80% for the past two years (has been having treatment for haemochromotosis) so whilst not great I don’t think it’s an imminent danger.

Just looked at that - I did the carrier test through them. Results in Two weeks which is great! My sibling’s results via the GP took about 12!!

Thanks so much. Hope your brother is ok

Can I just thank all you mumsnetters for your help.

I sent off for the private test as the doctors told me I Couldn't possibly have haemochromatosis.
And it is positive.

Cant thank you enough.

Anaemia is a very misunderstood condition, which majority of the time has nothing to do with insignificant levels of iron at all. There's a really good book that explains everything you'll never be told by your GP, I'll try to find it for you and post the link.

I just saw your update. What exactly is it that you tested for in this private test? I also have a similarly ish high transferrin saturation and have had the genetic testing. There are two gene mutations that are associated with haemochromatosis (C282Y mutation and H63D). You can test positive for both or just one, so there are 3 possible combinations of 'positive' results. Not all of them mean you have haemochromatosis. Do you know which ones you tested positive for? I am positive for H63D, but not C28Y, which means I am genetically inclined to have higher than normal transferrin saturation, but not in a way that damages my organs (I don't technically have haemochromatosis). If you test positive for just C28Y or both together, that is more definitively positive.

The good thing is it is really treatable and you're young so great to have caught it now while you are healthy.

@ironhelp

Please could you tell me where you got your test done?

I have only just spotted this and am very interested. I'm glad you have resolved this issue for you.

I had never heard of Haemochromatosis until my GP noticed in a routine blood test that my ferritin levels were very high. She looked into it further ( this was about 10 years ago when GPs used to be good) and found that I am a carrier, although I don't have it myself.

I would like to get my DS tested.

www.amazon.co.uk/IRON-DOUBLE-EDGED-SWORD-Kate-William/dp/B09TQLR3FN

For anyone interested

I tested for the type 1 gene. To see if I have it, not just a carrier. It was from the haemochromatosis charity website. £120 result back within 10 days

I understand that if you are a carrier, the NHS should test your DS if you ask them too.

"The doctor said "it's strange that your ferritin is normal and your saturation is so high, and I don't know what that means"

Rather than say they do not know what that means, they could speak to the haematology department of your local hospital for advice.

Thanks, ironhelp. I will have to chivvy DS, he's 24 and I don't think he has even registered with a GP yet - the surgery is right opposite his flat 🙄

Actually, to be fair they did send my results to to haematology who said they will monitor me yearly, but I don't meet the criteria to be tested for That condition.

After receiving the information from the charity, I do fit the criteria to be screened for that. As any women who's saturation is over 45% should be tested. And I was 70%

@TonTonMacoute haha. From all the reading I have done today, it seems more dangerous to men as they age so absolutely take him! (Or if he says no, could test his dad for the gene?)

My DH has very high ferritin levels and the Doctor thinks it may be inflammation, but there doesn't seem to be any obvious source of inflammation, any ideas? He's meant to get re-tested in a few months to see if it's still high.

Ask your GP for an "HFE" test (test for Hereditary Hemochromatosis), they may or may not as its an expensive test! or if not get one through Haemochromatosis UK.

Just caught up with this thread- your husband should have full iron studies and other inflammatory markers checked as a minimum. If transferrin saturations raised and/or other inflammatory markers NOT raised then (so no other signs of inflammation causing it) he should have genetic testing for haemachromatatosis. There’s an argument for doing the genetic testing anyway esp if transferrin sats at upper end of normal.

The pathway for doing that may vary with area. It’s amazing how many we pick up on routine bloods (usually men) are well aware they have a family history of it but have never got round to getting checked!!

Glad you’ve got an answer and hope referral etc going forward now.