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Probably the most common genetic disease you've never heard of.
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<blockquote data-quote="Belterboy" data-source="post: 2337512" data-attributes="member: 534113"><p>Hi Jennifer,</p><p></p><p>I am keen to share experiences with other Hereditary Haemochromatosis (HH) sufferers who have gone on to develop DM. I am told that damage to the pancreas, due to disease or surgery, leading to DM is now called Type 3c Diabetes! Which sounds much grander than the Type "One-and-a-Half" description explained to me on original diagnosis in 2016.</p><p></p><p>Ignorance is not bliss. No-one in my family knew about HH. Tingling, pricking pain in my feet and hands made me get a blood test. FGl of 18 indicated DM, a follow up test indicated DKA, so I ended up in hospital. My Ferritin was 2400 that day. I was started immediately on daily Glargine jabs, which got the DM back under control fairly quickly. Further genetic testing confirmed HH, and 18 months and 26 venesections later my Ferritin was 50.</p><p></p><p>This year has not been good as lockdown allowed my weight to go up, my fitness to go down, and my mood to wobble between resignation and despair. No sooner do I get one symptom sorted than some new one emerges, heartrate 85-90bpm resting, shaking hands, sleep problems etc</p><p></p><p>Trying to work out what factor is causing what issue is becoming much harder. Each specialist will only opine on their area. Even contradicting each other. Many GPs have little knowledge or experience of long term management of HH. So you are really required to join the dots up yourself.</p><p></p><p>If this story chimes with anyone, perhaps we can start collecting useful anecdotal data and strategies.</p><p></p><p>Thanks</p></blockquote><p></p>
[QUOTE="Belterboy, post: 2337512, member: 534113"] Hi Jennifer, I am keen to share experiences with other Hereditary Haemochromatosis (HH) sufferers who have gone on to develop DM. I am told that damage to the pancreas, due to disease or surgery, leading to DM is now called Type 3c Diabetes! Which sounds much grander than the Type "One-and-a-Half" description explained to me on original diagnosis in 2016. Ignorance is not bliss. No-one in my family knew about HH. Tingling, pricking pain in my feet and hands made me get a blood test. FGl of 18 indicated DM, a follow up test indicated DKA, so I ended up in hospital. My Ferritin was 2400 that day. I was started immediately on daily Glargine jabs, which got the DM back under control fairly quickly. Further genetic testing confirmed HH, and 18 months and 26 venesections later my Ferritin was 50. This year has not been good as lockdown allowed my weight to go up, my fitness to go down, and my mood to wobble between resignation and despair. No sooner do I get one symptom sorted than some new one emerges, heartrate 85-90bpm resting, shaking hands, sleep problems etc Trying to work out what factor is causing what issue is becoming much harder. Each specialist will only opine on their area. Even contradicting each other. Many GPs have little knowledge or experience of long term management of HH. So you are really required to join the dots up yourself. If this story chimes with anyone, perhaps we can start collecting useful anecdotal data and strategies. Thanks [/QUOTE]
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