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Being checked for possible haemochromatosis?

4 replies

Divoc2020 · 03/01/2025 14:40

I had covid last summer and was generally ill with fatigue and dizziness for about 4 months afterwards. I was also suffering with a painful neck /shoulder which I put down to post-viral inflammation.
I had blood tests done and got called back in Dec to have more done as my Serum Iron was higher than the normal range (38, with normal range going up to 30)
and my Transferrin saturation index at 73% (normal is 15-50). GP mentioned possible check for haemochromatosis (I'm not aware of any family history of this).

Just had a call back from the GP surgery to book a 'routine follow up appt' for a months time, but although my blood test results are listed in my heath record as having been received, I can't see them! I asked the practice admin person and she said the GP had reviewed them, but they weren't on my patient record?

She said if it was anything urgent the GP would have called me in for an urgent appointment, but now I'm just feeling like I'm going to be in a state of health anxiety for a month!

Can anyone cast any light on this?

OP posts:
BlueBandedButterfly · 03/01/2025 15:34

I would ask them to give you the results over the phone or call into the surgery and ask them to write them down or print off for you.

Sadbeaver · 03/01/2025 16:21

Your Tsat is pretty high at 73%. Have you had your ferritin measured?

I would phone to get your results that way.

The Haemochromatosis Charity are amazingly helpful if you want to run your results past them.

Haemochromatosis UK

We're the UK's only charity working to support people affected by genetic haemochromatosis, their families and communities.

https://www.haemochromatosis.org.uk/

ChocoChocoLatte · 03/01/2025 16:25

My husband and his mother/aunts have this - he's supposed to avoid red meat (doesn't) and to give blood (not as regularly as she should).

Divoc2020 · 03/01/2025 22:06

Sadbeaver · 03/01/2025 16:21

Your Tsat is pretty high at 73%. Have you had your ferritin measured?

I would phone to get your results that way.

The Haemochromatosis Charity are amazingly helpful if you want to run your results past them.

My Serum Ferritin was high within the normal range in July at 227 ug/L but back down to 152 ug/L in October.
I think I was probably taking multivitamins with iron when I was ill over summer, so that may not have helped!

OP posts:
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