Hi my name is tina I am a nurse and my first experience of lowblood sugars was 2 years ago I collased in my car whilst driving, stopped breathing ending up on a ventilator, eventually recovered but my blood sugars remain between 1.9 & 3.8 below this I collapse I am tired all the time have to take bloods regular no consultant has been able to say what is the problem which does get me down. My husband often phones 999 during the night as I am having an hypo and he cannot bring me round but my local hospital have given up on me. All I wait for is the day when no one can bring me round. My poor husband is terrified he will wake up one day to find me dead. We have had to research ourselves to find out the problem and my husband has spoken to a man in America by e mail who has the same problem and gave us a bit of advice. I am not classed as diabetic
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- Thread starter Tizzy
- Start date
- Status
Adrienne
Well-Known Member
- Relationship to Diabetes
- Parent
Hi Tizzy
How awful for you. Look at these two webpages :
www.hi-fund.org
www.sur1.org
My daughter is not classic type 1 diabetic either. She was diagnosed at birth with congenital hyperinsulinism which in laymans terms is the opposite of a diabetic. She was producing constant insulin and was 0.3 for 20 hours the day she was born. It is very rare and we ended up living in Gt Ormond St Hospital for 3 months. She had her pancreas removed and she had her first insulin injection at 5 weeks old.
The two websites will tell you more about CHI. It used to be only babies but I now know a few adults (but in the USA) who have been diagnosed with it.
The HI fund website is one I have helped write, I am part of the charity with the GOSH doctor. If I remember rightly you can contact me or the doctor through the website. He deals with children at GOSH but should be able to point you in the right direction. On both websites is a link to join the hyperins email group. This is a worldwide email group, generally for parents of children but we do now have a few diagnosed adults. If you think you fit the pattern, take a look, join the list and ask them some questions. Both websites give you an insight into CHI.
I hope you get this sorted. Somehow you HAVE to keep your levels above 3.5 but 4.0 ideally. You cannot let them go below 3.0. Whilst you are getting a proper diagnosis try drinking cornstarch (normal shop bought cornflour). It tastes disgusting but if you mix it with yohurt or something it may disguise it. Don't heat it up or cook it, have it raw. It is an extremely slow release carb. They use is in the USA and Australia to keep levels up as part of the medical regime in these CHI children and it works. I tried it on my daughter and it just shot her up to the 20's and kept her there.
I hope I have helped a bit.
Look after yourself.
Adrienne
How awful for you. Look at these two webpages :
www.hi-fund.org
www.sur1.org
My daughter is not classic type 1 diabetic either. She was diagnosed at birth with congenital hyperinsulinism which in laymans terms is the opposite of a diabetic. She was producing constant insulin and was 0.3 for 20 hours the day she was born. It is very rare and we ended up living in Gt Ormond St Hospital for 3 months. She had her pancreas removed and she had her first insulin injection at 5 weeks old.
The two websites will tell you more about CHI. It used to be only babies but I now know a few adults (but in the USA) who have been diagnosed with it.
The HI fund website is one I have helped write, I am part of the charity with the GOSH doctor. If I remember rightly you can contact me or the doctor through the website. He deals with children at GOSH but should be able to point you in the right direction. On both websites is a link to join the hyperins email group. This is a worldwide email group, generally for parents of children but we do now have a few diagnosed adults. If you think you fit the pattern, take a look, join the list and ask them some questions. Both websites give you an insight into CHI.
I hope you get this sorted. Somehow you HAVE to keep your levels above 3.5 but 4.0 ideally. You cannot let them go below 3.0. Whilst you are getting a proper diagnosis try drinking cornstarch (normal shop bought cornflour). It tastes disgusting but if you mix it with yohurt or something it may disguise it. Don't heat it up or cook it, have it raw. It is an extremely slow release carb. They use is in the USA and Australia to keep levels up as part of the medical regime in these CHI children and it works. I tried it on my daughter and it just shot her up to the 20's and kept her there.
I hope I have helped a bit.
Look after yourself.
Adrienne
Caroline Wilson
Well-Known Member
- Relationship to Diabetes
- Type 2
Hi Tina, sorry to hear about your problems. Although others I know don't have the same problems as you, the length of time taken by hospital consultants to reach diagnosis can be quite demoralising.
There is a lot of support on these boards, so please don't give up on yourself. You are giving us different insights and a new way of looking at things.
There is a lot of support on these boards, so please don't give up on yourself. You are giving us different insights and a new way of looking at things.
Northerner
Admin (Retired)
- Relationship to Diabetes
- Type 1
...I hope I have helped a bit.
Look after yourself.
Adrienne
Adrienne, thank you for this insight - something I'd never heard of.
Tina, I do hope that you find answers soon and can start living a normal life without fear of hypos.
Take care
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