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Haemochromatosis diagnosis.

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Christy

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Relationship to Diabetes
Type 2
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
 
Looks as good as anywhere to me. Hope there is somebody out there who can help.
 
Looks ok here to me too.
You sure are having a bad time if it this year .

In my old employment of working on blood collection teams for what was then called the National Blood Transfusion service. We used to have one or two people coming to give blood who had Haemochromatosis .This would normally have been done in the hospital back then but I believe they came to us so their blood could be used for research.
I know very little about this condition and what I do know is probably well out of date now as I haven’t worked for them since February 2008 .

I hope you get some answers and reassurance soon.
 
I'm going to have to google again!
 
If you put haemochromatosis into the search option on this forum (top right of page), there are a few threads.
 
Thanks all. I've looked through all the threads. Just wanted to check in with someone who has it. Not happy with the assumption I've to go on meds immediately when I'm trying to tackle it (Hb1ac of 49) head on with weight loss and exercise. Don't know enough about the Haemochromatosis to know if that's a bad idea. Prefer not to use medicine unless necessary.
 
Christy said:
Thanks all. I've looked through all the threads. Just wanted to check in with someone who has it. Not happy with the assumption I've to go on meds immediately when I'm trying to tackle it (Hb1ac of 49) head on with weight loss and exercise. Don't know enough about the Haemochromatosis to know if that's a bad idea. Prefer not to use medicine unless necessary.
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Have you questioned your Doctor/Nurse why they don't want you to try Diet first?
 
I'm probably jumping the gun. Letter came through the post today with diagnosis from hospital (including instructing gp to put me on meds). I wanted to find out as much as possible before talking to gp.
 
Christy said:
I'm probably jumping the gun. Letter came through the post today with diagnosis from hospital (including instructing gp to put me on meds). I wanted to find out as much as possible before talking to gp.
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I would still discuss with your GP! Your HBA1C is not that high.
 
Thanks. That's my intention. They need to give me a chance. I've radically altered my diet and am out walking every day so I want to see the results from 3 month's of that before I agree to medication.
 
Christy said:
Thanks. That's my intention. They need to give me a chance. I've radically altered my diet and am out walking every day so I want to see the results from 3 month's of that before I agree to medication.
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Good luck!
 
grovesy said:
I would still discuss with your GP! Your HBA1C is not that high.
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I agree.
An Hb1ac of 48 get you the dx of Diabetes so at 49 you are just a smidgen across the threshold, I and many others in here were very much higher. It is worth discussing a three month trial to see if you can bring it down yourself without diabetes meds

As for your other condition , check with your consultant/ Gp to see if their is good charity etc similar to our diabetes one
 
Thanks everyone
 
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.
 
Christy said:
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.
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5.5 is great was that an Hb1ac or an on the spot finger prick .
It’s good news about the no meds’ too.
 
It was an on the spot finger prick. Keen not to redo the HbA1c until 3 months from the last test (end August).
 
Agree with others but I noted from the NHS website that heamochromatosis can (not will) affect the performance of the pancreas so its a good idea to keep up regular HbA1c tests to keep an eye on things.
 
Thanks Docb, useful to know. Covid permitting, hoping to learn more about Haemochromatosis at nurse venesection clinic & consultant appointment. They have referred me to the British Liver Trust. Hereditary, need siblings & kids tested. Every day's a school day....
 
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Christy said:
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.
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Really pleasd for you @Christy

Good luck and keep us posted 🙂
 
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

www.haemochromatosis.org.uk

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 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)
 
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