• Guest - w'd love to know what you think about the forum! Take the 2026 Survey »

Hemochromatosis

I

Ian090

Member
Messages
12
Type of diabetes
Type 2
Treatment type
Diet only
I was diagnosed with type 2 December last year. Since then I've managed to via low carb diet get my blood sugars under control. A1c was 37 last week and I've lost 26kgs since January 6th
However all during this time I've been suffering from headaches & dizzy spells
I went for an MRI brain scan & blood test
I've been told that the scan is clear but my ferritin levels are very elevated at 800. During this time my skin is darkening and turning brown
I'm at the doctor's this week again but it seems I've got all the symptoms of hemochromatosis. This condition causes diabetes and looking back now my high A1c levels shocked my doctor as it came on so quickly.
Does anyone have any experience of hemochromatosis?
Currently despite the weight loss & better A1c levels I feel pretty bad
 
Some knowledge rather than personal experience,. My cousin was diagnosed with this about 20 years ago. She is treated by having blood withdrawn from her body at regular intervals. This is because the extra iron damages other organs, like the liver, not just the pancreas. The iron level is monitored by regular blood tests, which determine when action is needed. Hope this is helpful. If controlled, it doesn't seem to be a problem.
 
Ian090 said:
I was diagnosed with type 2 December last year. Since then I've managed to via low carb diet get my blood sugars under control. A1c was 37 last week and I've lost 26kgs since January 6th
However all during this time I've been suffering from headaches & dizzy spells
I went for an MRI brain scan & blood test
I've been told that the scan is clear but my ferritin levels are very elevated at 800. During this time my skin is darkening and turning brown
I'm at the doctor's this week again but it seems I've got all the symptoms of hemochromatosis. This condition causes diabetes and looking back now my high A1c levels shocked my doctor as it came on so quickly.
Does anyone have any experience of hemochromatosis?
Currently despite the weight loss & better A1c levels I feel pretty bad
Click to expand...
Have you been treated for Hemochromatosis since your post last year?
 
Has anyone experienced treatment of hemochromatosis induced type 2 diabetes with the new glip2 drugs?
 
I have three acquaintances and a close friend who have developed haemochromatosis in later life, so the disorder is not uncommon. The incidence seems to be higher among those of Welsh and Irish ancestry. All were diagnosed and treated promptly, so none has gone on to develop secondary diabetes.

Btw there are at least 4 types of haemochromatosis caused by different faulty genes, so you cannot place too much reliance on one individual's experience.
 
I have Type 1 Haemochromatosis: I have 2 genes, H282Y & H63D Compound Variant. It doesn’t arrive in older age, you inherit the genes.

It affects men more and sooner than women because of women's menstrual cycle, but after the menopause many women start having more symptoms.

There are different variants, the one mainly in focus is the C282Y + C282Y. You inherit a gene from your mother and a gene from your father providing they each have a gene. Generally those with 2 C282Y genes fair the worst.

I was hoping for more people experiencing diabetes, arrhythmia here so I might be able to get some information.

With untreated Haemochromatosis, which is an Iron overloading problem, the major organs can be damaged, this can lead to diabetes and heart issues.

Haemochromatosis is called ‘The Celtic Curse’ all those of Celtic origins. So the English can have it too and also the Scottish.

Haemochromatosis is not a benign genetic disorder, it can have very serious health problems, especially when not diagnosed and treated for years.

My variant is apparently a ‘Slow iron loader’. I believe the fact I went to a Low Carbohydrate diet 5 years ago when diagnosed with Type 2 Diabetes has quite possibly saved me from over loading iron in my organs - may be.
 
Back
Top