Anyone had a similar experience?
My girlfriend had gestational diabetes which was diet controlled. Out of curiosity I tested my blood sugar with her kit and got a reading of 23mmol. I continued to test my BG for a week and didn't have a reading below 16mmol. I went to see my GP (who I hadn't seen in 7 years) and they tested my ketones (1.0) and sent me to hospital. At hospital I was given two drips and a dose of insulin and I started to feel better than I had felt in a while.
The next day I saw a diabetes specialist and they taught me how to inject and I was prescribed 12 units of Levermir and 4 units of Novorapid and the specialist was 90% sure I was type 1 diabetic (33yo, overweight but not obese). At some point (cannot remember when) I was told I had a hb1ac of 104. I was also given a libre2 because I work in a kitchen.
Less than a month later my daughter was born. Because of my partners GD they tested her blood sugar an hour after being born, it was so low that it was undetectable. Luckily she was treated quickly and suffered no complications. She is now currently treated for congenital hyperinulinism (CHI) with diazoxide and is doing well.
Eventually the 3 of us got genetic testing. Girfriends was fine, but me and my daughter have 'heterozygous pathogenic ABCC8 missense variant'. Also mentioned was my diabetes was likely to be monogenic. I think (not 100% sure) this means I have MODY12.
After experimenting with food and Novorapid I was sometimes using up to 10 units per meal, which usually worked ok. However I found that with Insulin I was putting weight on fairly easily. After reading a lot of posts on this forum I decided to go low carb. Because of this I was able to stop taking Levemir and now just take between 2-10 units of novarapid a day (often just 1 morning injection). LibreView indicates my GMI is 40 (5.8%) and LibreLink tells me my estimated A1C is 46 (6.4%). I've also lost about 9lb since going low carb about 3 weeks ago, without periods of hunger. I have the forum and it's members to thank for these results; have been reading a lot of stuff and following suggested links (i.e dietdoctor, Dr Bernstein etc).
Generally feeling pretty lucky, but I still have some issues and questions. My eyetest indicated I have some retinopathy, but luckily it does not affect my vision currently. Because of the nature of my 'type' of diabetes I think I might have had it for a long time, and perhaps the retinopathy confirms it for me a little. I didn't recognise the symptoms of diabetes because I would drink a lot of water in a hot kitchen anyway and I think the rest of the symptoms I put down to depression. I was diagnosed with schizoaffective disorder when I was 19.
I feel like I have more aches and pains than I should have for my age and I suspect neuropathy. My shoulder pain sometimes makes it difficult to get to sleep (Diabetic frozen shoulder??). I also find I don't have as much energy, but not sure why (Don't seem to have got any back since starting insulin). Can neuropathy increase feelings of tiredness? I used to work 5 days a week on my feet in a busy kitchen environment and now I feel just as tired with just 2 days a week. Is there anyway I can get tested and/or treated for neuropathy?
Apparently 'patients with loss of function variants do not respond well to sulfonylureas'. Would there be any other treatment options for me? Happy with Novorapid anyway, I am more worried about side-effects with medication changes.
Thanks for reading.
Boggle
My girlfriend had gestational diabetes which was diet controlled. Out of curiosity I tested my blood sugar with her kit and got a reading of 23mmol. I continued to test my BG for a week and didn't have a reading below 16mmol. I went to see my GP (who I hadn't seen in 7 years) and they tested my ketones (1.0) and sent me to hospital. At hospital I was given two drips and a dose of insulin and I started to feel better than I had felt in a while.
The next day I saw a diabetes specialist and they taught me how to inject and I was prescribed 12 units of Levermir and 4 units of Novorapid and the specialist was 90% sure I was type 1 diabetic (33yo, overweight but not obese). At some point (cannot remember when) I was told I had a hb1ac of 104. I was also given a libre2 because I work in a kitchen.
Less than a month later my daughter was born. Because of my partners GD they tested her blood sugar an hour after being born, it was so low that it was undetectable. Luckily she was treated quickly and suffered no complications. She is now currently treated for congenital hyperinulinism (CHI) with diazoxide and is doing well.
Eventually the 3 of us got genetic testing. Girfriends was fine, but me and my daughter have 'heterozygous pathogenic ABCC8 missense variant'. Also mentioned was my diabetes was likely to be monogenic. I think (not 100% sure) this means I have MODY12.
After experimenting with food and Novorapid I was sometimes using up to 10 units per meal, which usually worked ok. However I found that with Insulin I was putting weight on fairly easily. After reading a lot of posts on this forum I decided to go low carb. Because of this I was able to stop taking Levemir and now just take between 2-10 units of novarapid a day (often just 1 morning injection). LibreView indicates my GMI is 40 (5.8%) and LibreLink tells me my estimated A1C is 46 (6.4%). I've also lost about 9lb since going low carb about 3 weeks ago, without periods of hunger. I have the forum and it's members to thank for these results; have been reading a lot of stuff and following suggested links (i.e dietdoctor, Dr Bernstein etc).
Generally feeling pretty lucky, but I still have some issues and questions. My eyetest indicated I have some retinopathy, but luckily it does not affect my vision currently. Because of the nature of my 'type' of diabetes I think I might have had it for a long time, and perhaps the retinopathy confirms it for me a little. I didn't recognise the symptoms of diabetes because I would drink a lot of water in a hot kitchen anyway and I think the rest of the symptoms I put down to depression. I was diagnosed with schizoaffective disorder when I was 19.
I feel like I have more aches and pains than I should have for my age and I suspect neuropathy. My shoulder pain sometimes makes it difficult to get to sleep (Diabetic frozen shoulder??). I also find I don't have as much energy, but not sure why (Don't seem to have got any back since starting insulin). Can neuropathy increase feelings of tiredness? I used to work 5 days a week on my feet in a busy kitchen environment and now I feel just as tired with just 2 days a week. Is there anyway I can get tested and/or treated for neuropathy?
Apparently 'patients with loss of function variants do not respond well to sulfonylureas'. Would there be any other treatment options for me? Happy with Novorapid anyway, I am more worried about side-effects with medication changes.
Thanks for reading.
Boggle
