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Hemochromatosis?

7 replies

Ididthattoo · 10/12/2016 15:33

So, I have just had a full set of comprehensive blood tests on the NHS. In my iron studies, two of the values are not in the normal range.

I asked my GP who said not to worry, but if I google these two abnormal results it looks like it is a serious issue (hemochromatosis).

Is there a doctor on here on mumsnet (maybe hematologist or similar) who could put my mind at rest?

The values are Serum TIBC at 41.5 (normal range 53-85) and transferrin saturation index at 51.6% (normal range 20-40%).

Alternatively can someone suggest a specialist I could go and see? Happy to pay myself if necessary.

Thanks a lot.

OP posts:
EmeliaHerveyHenryFitzroy · 11/12/2016 11:00

Can you see an alternative GP for second opinion?

Not all private consultants will accept self-referrals even if you are self-paying.

MrsPeppapig · 11/12/2016 11:04

Push for further testing. There's a type of leukemia that can show this sort of result, too. See another gp and another one if necessary.

EmeliaHerveyHenryFitzroy · 11/12/2016 11:06

If you can afford a private consultant then I'd suggest that you rather first pay to see a private GP.

where do you live? Can you get private GP recommendations? Be careful who you chose and it's best to find an NHS GP who also practices privately.

hollyisalovelyname · 11/12/2016 14:38

Irish people get haemochromatosis more than most other races apparently.
My GP thought I might have it but tested negative.
Perhaps posters on Craicnet a topic area on Irish subjects on Mumsnet might have some experience with it?
Go to Topics and enter Craicnet. That'll bring you there.

yellowpostitnote · 11/12/2016 20:26

A relative found she had this after many years of being poorly and fobbed off. My iron had recently shot up so I'm going to be checked again in spring; my dad is a carrier.

Is it in the family?

There's a genetic test to check for a gene. 'Traditionally' it's men that get it but in reality I think it's equally men and women near menopause.

I'd ask for a double check. There's a charity / info group too I believe. I believe it's good to get treatment early to avoid too much damage.

yellowpostitnote · 11/12/2016 20:27

I think though, ferritin must be out of range along with transferritin to red flag heamachromatosis.

Ididthattoo · 15/12/2016 19:27

Thanks all. I have decided to wait three months and then get retested. I took lots of iron and that might be the reason for these results. If the results are also off in February then I will go and see a specialist and pay for it. Thanks again!

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