Haemochromatosis diagnosis.

[Christy]

Thanks, looks like this organisation has loads of info. Waiting for my first "vampire" session as you call it 🙂 Urgent referral ...covid....who knows when I'll be seen...

 

[everydayupsanddowns]

Hope the appointment comes through quickly for you @Christy

 

[Christy]

Thank you. It is worrying. Other than venesection sessions I don't know what it means for me. Hopefully it's been detected before any damage to my organs.

 

[Tam]

Hi, not sure I'm posting in the right section. Recent diagnosis of type 2 with a blood sugar level of 49. Just been diagnosed with Haemochromatosis. Anyone else have this diagnosis that I can chat to? Thanks

Hi I’ve had it for quite some time they call it the Celtic disease I was taken into a day centre and they took a pint of blood every week until the iron level settled down Haemochromatosis sneaks up on you much like diabetics did it can be damaging if unchecked but as I said my experience was to have blood taken I don’t know if this has been much help hope so

 

[Christy]

Thanks Tam.

 

[Christy]

Finally had my first venesection. Disappointing to note that the diet advice from the British Liver Trust is to follow the Eatwell Guide and to have approx 30% of your plate filled with carbs such as bread, potatoes etc and to eat low fat products. Don't know why I'm surprised. I'm going to continue with low carb, normal fat as I'm continuing to lose weight and maintaining good bg levels.

 

[Docb]

Good to see things are moving on @Christy. Maybe you could contact the British Liver Trust and suggest to them that whilst their dietary advice may be applicable to many, it is not good for somebody who has type 2 diabetes as well heamochromatosis and see what they have to say?

 

[Christy]

Thanks, tbh I think I'd be batting my head against a brick wall given it's the UK's dietary advice and DUK's website appears to endorse it as well.

 

[Docb]

See your point @Christy.

 

[Christy]

And I'd be following it if wasn't for this forum!