Haemochromatosis diagnosis.

[everydayupsanddowns]

Spoke to my GP today. She tested my BS levels (non fasting) on Tuesday & they were 5.5 (I'm thinking that's good?). She's very impressed with recent results due to diet & exercise and will not be starting me on medication per the hospital letter. So pleased. Keeping at the diet & exercise. Thanks for all your advice everyone.

Really pleasd for you @Christy

Good luck and keep us posted

 

[Barbie1]

A colleague of ours has haemochronotosis (though not diabetes) and had regular vampire slots at local hospital, which have not been happening at all since lockdown and she has got into a dreadful state. Thankfully she was called back to a slot at a private clinic today to see if they can resume her treatment so we all have fingers crossed she will be ok. Do keep as eye on that as well as your diabetes!

i think there is a patient run charity for sufferers

Haemochromatosis UK

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

www.haemochromatosis.org.uk

Sorry if this has been of little help!

(But a nice excuse not to go out in the rain - you might rust!!!!! Only joking)

 

[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!