This is a little long and boring but please bear with me as I am really worried about my future.
Hi, I'm a new member here but I'm hoping this will help me!
My name is Neil and I live in Derby, I was diagnosed Type 1 back in 1985 at the age of 21. I was first placed on the pork insulin Actrapid and Insulatard, two injections a day after a weeks stay in hospital,, having to weigh your food and calculate carbohydrates was a lot more difficult in those days but over the years things changed dramatically.
Changing onto the new at that time human insulin's created a few problems for me, hypo signs became less and coma's became a problem. After a stay in hospital I decided to change back to the pork insulin with the agreement of my doctors although they didn't recommend this, it had the desired effect and my diabetes improved greatly. This was 1987 and as time went on pork insulin's stopped being manufactured and I was forced back onto human insulin and again my problems started back up.
After some years of struggling with control in 1991 I was suffering major coma's weekly, this resulted in me having to leave work on medical grounds going onto sickness benefits with a number of other problems including blood pressure, depression, high cholesterol and arthritis all before the age of 30.
I was then placed on the DAFNE course and was the second person in the Derby area to be placed on one of the new pumps being told my signs of hypo's would come back and my diabetes would improve massively.
Although the pump was a god send over the years my health has deteriorated to the point I now suffer from early on set dementia caused by my hypo's, this has been diagnosed after a number of tests and brain scans.
I am on the CGM pump and sensor although Derbyshire PCT have refused to pay for this saying to me that when a new gadget comes out everybody wants it, although I told them that if I wanted a new toy I would go to PC World and appeared in the Derby Evening Telegraph they still, 4 years later still refuse to fund the sensor for me. I have suffered so many hypo's over the years that I know I am lucky still to be here, my wife is my angel who looks after me and helps me through all the bad times worrying daily about my diabetes.
I test my sugars four times daily minimum, both to calibrate the sensor and put my mind at rest. Sometimes the sensor does have problems giving wrong readings showing hypos and suspending my insulin when my sugars are high and vice versa.
Anyway to the really important issue, last week I suffered another massive hypo, my wife found me unconscious in bed sugars down to 1.2, I was suffering a seizure and she gave me Glucagon waiting a few minutes before calling an ambulance as this carried on. The paramedics got my sugars up the seizure ended and apparently they showed my sugars were up to 17mmols, but I wasn't coming out of the coma. They decided to take me into hospital who were on the verge of taking me into intensive care when they put me on oxygen as my levels were very low. soon after I stared to regain consciousness, this was over two hours after first being found by my wife. This is the worst hypo I have ever had and I remember nothing about the incident, this has left my wife and myself extremely worried about what the future holds for me.
My consultant has just left the hospital when I was being considered for an islet transplant and still fighting for the sensor full time, it doesn't look as though there is another consultant to take over Derby has had problems finding a diabetic consultant over the years and it looks like this is the case again.
It took me 7 years to get diagnosed with the dementia, been fighting for the sensor to be funded for 4 years without luck, talking about an islet transplant for over 2 years and now I have no consultant who can tell me anything. Why am I having to fight so hard for the help that others seem to get easier, I have worked so hard over the years to get my diabetes stable without luck even the Derby hospital diabetes staff have ran out of ideas, new staff come along and try things over and over again leaving me going back in time. Can anybody give me any advice on how I can move forward as at the age of 50 I feel as though I am now being left out to cope until the ultimate happens to me and I die from a hypo.
PLEASE PLEASE, Any advice would be gratefully received!!!!!!!!!!!!!!!!!!!!!
This is a little long and boring but please bear with me as I am really worried about my future.
Hi, I'm a new member here but I'm hoping this will help me!
My name is Neil and I live in Derby, I was diagnosed Type 1 back in 1985 at the age of 21. I was first placed on the pork insulin Actrapid and Insulatard, two injections a day after a weeks stay in hospital,, having to weigh your food and calculate carbohydrates was a lot more difficult in those days but over the years things changed dramatically.
Changing onto the new at that time human insulin's created a few problems for me, hypo signs became less and coma's became a problem. After a stay in hospital I decided to change back to the pork insulin with the agreement of my doctors although they didn't recommend this, it had the desired effect and my diabetes improved greatly. This was 1987 and as time went on pork insulin's stopped being manufactured and I was forced back onto human insulin and again my problems started back up.
After some years of struggling with control in 1991 I was suffering major coma's weekly, this resulted in me having to leave work on medical grounds going onto sickness benefits with a number of other problems including blood pressure, depression, high cholesterol and arthritis all before the age of 30.
I was then placed on the DAFNE course and was the second person in the Derby area to be placed on one of the new pumps being told my signs of hypo's would come back and my diabetes would improve massively.
Although the pump was a god send over the years my health has deteriorated to the point I now suffer from early on set dementia caused by my hypo's, this has been diagnosed after a number of tests and brain scans.
I am on the CGM pump and sensor although Derbyshire PCT have refused to pay for this saying to me that when a new gadget comes out everybody wants it, although I told them that if I wanted a new toy I would go to PC World and appeared in the Derby Evening Telegraph they still, 4 years later still refuse to fund the sensor for me. I have suffered so many hypo's over the years that I know I am lucky still to be here, my wife is my angel who looks after me and helps me through all the bad times worrying daily about my diabetes.
I test my sugars four times daily minimum, both to calibrate the sensor and put my mind at rest. Sometimes the sensor does have problems giving wrong readings showing hypos and suspending my insulin when my sugars are high and vice versa.
Anyway to the really important issue, last week I suffered another massive hypo, my wife found me unconscious in bed sugars down to 1.2, I was suffering a seizure and she gave me Glucagon waiting a few minutes before calling an ambulance as this carried on. The paramedics got my sugars up the seizure ended and apparently they showed my sugars were up to 17mmols, but I wasn't coming out of the coma. They decided to take me into hospital who were on the verge of taking me into intensive care when they put me on oxygen as my levels were very low. soon after I stared to regain consciousness, this was over two hours after first being found by my wife. This is the worst hypo I have ever had and I remember nothing about the incident, this has left my wife and myself extremely worried about what the future holds for me.
My consultant has just left the hospital when I was being considered for an islet transplant and still fighting for the sensor full time, it doesn't look as though there is another consultant to take over Derby has had problems finding a diabetic consultant over the years and it looks like this is the case again.
It took me 7 years to get diagnosed with the dementia, been fighting for the sensor to be funded for 4 years without luck, talking about an islet transplant for over 2 years and now I have no consultant who can tell me anything. Why am I having to fight so hard for the help that others seem to get easier, I have worked so hard over the years to get my diabetes stable without luck even the Derby hospital diabetes staff have ran out of ideas, new staff come along and try things over and over again leaving me going back in time. Can anybody give me any advice on how I can move forward as at the age of 50 I feel as though I am now being left out to cope until the ultimate happens to me and I die from a hypo.
PLEASE PLEASE, Any advice would be gratefully received!!!!!!!!!!!!!!!!!!!!!
Yes I have tried low carbohydrate diets over the years, I have a very close relationship with my dietition, the thing is with all the problems and other illnesses I have and have suffered over the years the low carb diet caused me other problems and situations. I feel also that these adds by third parties can be very misleading, it is not always just about diabetes control as a simple sugars and carbs = the same amount of insulin for everybody. Other illnesses and other factors in life have an impact on this debilitating illness when control cannot be found. None of this considers people who suffer third party effects e.g. dreams and nightmares can lower sugars, we all dream different and it affects individuals in different ways. Exorcise again is very individual, some of us are unable to do it and we all our metabolism's generate different uses of sugars. Medicines we take as type 1 diabetics who have had this illness from a young age can have a major effect on control.
I can go on and on and on about what can effect an individual with diabetes, AND may I add we are all indivual, different lives with different ways and means of coping and living with this illness.
I do not wish to be ignorant, abusive or in anyway transparent to what you are saying but I saw the man who is going to be conducting my operation less than three weeks ago. He is the leading pancreas transplant surgeon in the country based at both Manchester and London, his prognosis on my condition combined with all the other illnesses I suffer was as follows:
My daughter accompanied me to the appointment as I have been classed as Disabled for 25 years, I can't drive due to 0% hypo awareness, I have in the past 6 months had 12 ambulances called out and been entered into hospital twice with keto acidosis on the verge of intensive care and spending ten days having to get not just my sugars back down but other communication including my potassium and other chemicals that are part of this life threatening complication.
The team who look after me and who said I have no option but to have surgery either by Islet or full pancreas transplant have been at a loss as to treating my diabetes, it's been a fight for me for over 25 years and yes I've read everything including what you are trying to sell. I do not like some of the headlines and assertions that your literature leads diabetics into believing. My advice for anybody seeing these books to take them as they should be taken, a sales ploy to make money. If diabetes was so easy to control, so easy to maintain and so easy as a lot of these publications push, diabetes would not be the problem it is.
Please do not use my thread to advertise how people can cure diabetes because you are embarrassing to those of us who can see through you, at a minimum you are a danger to diabetics out there who want to believe that there is a miracle cure!!!!!!!!!!!!!!!!!!!!!!!!!!
Hi,Thanks for that information and I would like to apologise to @Charles Robin 's link. Yes my phone is a new phone and I'm not sure what the security settings are at the moment as I've only had it a few days but again I went to the link on it and the same video link came up which I looked at more closely and yes it is a utube video but not the Troy Stapleton link which I get on my computer. I shall make sure that I only use my computer at the moment to access the diabetes.co.uk site as I must look into the security settings on the phones internet. New technology is not my greatest asset at my age and I wonder if it is possible for me to remove my comment on here, your advice would be most welcome!!!!
Thank you for your wishes, I would like to keep people up to date on what's involved and how the operation evolves over time, I am optimistic but very scared too.
No worries Neil, and I'm sorry you had trouble with the link. It was definitely meant to be the Troy Stapleton video, not a link to someone selling snake oil.Thanks for that information and I would like to apologise to @Charles Robin 's link. Yes my phone is a new phone and I'm not sure what the security settings are at the moment as I've only had it a few days but again I went to the link on it and the same video link came up which I looked at more closely and yes it is a utube video but not the Troy Stapleton link which I get on my computer. I shall make sure that I only use my computer at the moment to access the diabetes.co.uk site as I must look into the security settings on the phones internet. New technology is not my greatest asset at my age and I wonder if it is possible for me to remove my comment on here, your advice would be most welcome!!!!
Thank you for your wishes, I would like to keep people up to date on what's involved and how the operation evolves over time, I am optimistic but very scared too.
Thank you everybody for your replies, some of them are very interesting and I will go into a little more detail tomorrow but I thank you all very much. Regarding the email saying that hypos are not a direct cause of dementia, I'm afraid that is not the case, I have been in touch with dementia UK who themselves are now looking at the link between dementia and type 1 diabetes. In the past type 2 diabetes was always thought to have the main link with dementia but tests are now being carried out in the US regarding serious diabetic coma's and dementia. They found that type 1 diabetics having problems with deep coma's and seizures due to low blood sugars can suffer early on set dementia usually leading to Alzheimer's later on. The memory clinic in Derby I attended gave me this information and felt themselves that this was the cause of my own dementia, although they could not be 100% they diagnosed me with early on set dementia and said I should have the latest technology available so to not make it any worse for as long as possible.
The symptoms started 8 years ago when I was 42 when there was no information on this matter but nobody could diagnose me at that time thinking that It was either just in my mind or that I was overstating the symptoms. My age has been the major concern regarding the on set of dementia and suffering type 1 diabetes for 30 years now was the only link they could find not having any family history of this. Dementia comes in many forms and new links to it are being found regularly, Type 1 coma's from low sugars are now very much considered to be a side effect of suffering these usually happening to those of us who lost our signs of hypoglycaemia many years ago, for me I haven't felt hypo's for between 15 and 20 years now.
When human insulin first became available I was told it had no link to losing these senses, but over the years many diabetics have lost there lives to going into coma's. Now they know that human insulin can and is a problem that causes loss of early hypo senses like sweats, hunger and shakes. so now the longer term effects of human insulin are coming out after being available for some 30 years, this is one of those links that are only just being diagnosed.
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