haemochromatosis?? Help with blood results.

[Anon2023]

hi. I’m new to this forum so please bear with me. My late mum had this condition as does my sister. I was always regularly anaemic but had blood test results today that would suggest that I’ve got an iron overload. I’m worried that I might also be developing haemochromatosis and wondered if anyone would be kind enough to give an opinion. I’m 51 and female. I had iron infusions last year for anaemia but nothing for over 6 months. My Gp just said my results (given below) were acceptable, whatever that means. I’d be very grateful for your opinions. Thanks

Serum ferritin 604 ug/l

B12. 412 ng/

Serum folate. 5.4 ug/l

Iron 14.2 umol/l

Serum transferrin 2.1. g/l

Transferrin saturation 27%

[Mall]

As you have close family, mum and sister with the condition you could ask for the genetic test and should have been offered one when they were diagnosed. This would put your mind at ease one way or the other. I am not qualified to comment on blood tests results. Ferritin levels can be affected by many different conditions.

if your GP is refusing the genetic blood test you could arrange this privately. The Haemochromotosis Society Uk, offers genetic testing at a reasonable cost much cheaper than paying privately. First try and persuade your GP to do it due to family history.

The society has a good help line so why not ring them for advise.

[Anon2023 in reply to Mall]

hi. Thank you so much for replying. I did tell my gp when my sister was diagnosed (after she ended up in hospital) but he said that because my iron levels were ok at that time it was unlikely that I had the condition. I’ll go back to them and ask for a genetic test. Thank you again for your reply, I am very grateful.

[Mall in reply to Anon2023]

You may have the gene and not load iron or need treatment. Some don’t, but it is important to know if you have it as you may pass it on to your children. GPs seem reluctant to do anything unless ferritin levels go above 1000. But this is not good enough as that level of overload could cause organ damage. The cost of genetic testing has come down considerably, the cost is what put GPs off. If he still refuses phone the Haemochromotosis Society UK for further advice and ask about their testing service.

[Anon2023]

hi. I will do. I’ve queried my test results with my gp and hopefully they’ll ring me tomorrow. I’ve already got mild heart failure so I’m keen to get this resolved. If the doc doesn’t do the haemochromatosis test I’ll just pay. Thanks again for your reply.

[Rosepetal60]

Hello Anon2023. From my own experience with ferritin levels, it maybe with your Ferritin score, you might be a carrier of Haemochromatosis It took me about 2 years to persuade my GP to arrange the test when I had a Ferritin score of about 660. And so I found out I was a carrier of Haemochromatosis. Which I’ve been told can bring its own side effects. But I’ve also been reassured on other issues about being a carrier.

[Anon2023 in reply to Rosepetal60]

hi. Thanks for your reply. I’m having my bloods re tested in a couple of weeks and if it’s still high I’m going to get the haemochromatosis test. If my gp won’t do it I’ll have it done privately. Thanks again.

[JigFettler]

Your GP must sort this out for you! It's the the job of the GP. No need to go private. It's important and urgent.

There are other reasons Ferritin can be raised, it's an "acute phase " molecule.

Jig

[Anon2023 in reply to JigFettler]

hi. Thanks for your reply. I’ve got blood tests next week. Fingers crossed that it’s reduced by then. Thanks again.