Major Problems

[Neil Fowkes]

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!!!!!!!!!!!!!!!!!!!!!

 

[Patch13]

Sorry to hear about all the problems you've had and the battles for equipment, which would help you.

When reading your post I was wondering if you have ever looked into a hypo alert dog - I know I have read about people benefitting from these trained dogs, so it might be worth finding out about if you think it could be a possibility for you.

Secondly, have you ever considered low carbing? If you haven't then I would recommend reading Dr Bernsteins Diabetes Solution book. This has lots of info about diabetes in general as well as the diet he suggests. This may be beneficial to you as he suggests that if you use small amounts of insulin (due to a small amount of carbs being eaten) then there are less likely to be hypos and hypers in your diabetes control. Low carb isn't for everyone, but worth considering if you haven't before as it had made a huge difference to my diabetes control!


All the best.


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[Mud Island Dweller]

Tried the papers and also demanding your dr send you to a consultant at say Nottingham it is just down the road. I know derby bad from 2 ill friends who live there

 

[CarbsRok]

Hi Neil. both pork and beef insulin are available. They are manufactured in the UK and very easy to get hold of. You can also put your pork insulin in a pump.
So insist you are changed back to pork if this works for you.

 

[Totto]

Low-carbing seems to be a sensible thing to try. Go for good quality fats like organic butter, olive oil, coconut oil but not the other vegetable oils, cheese and nuts along with fish, meat and vegetables.

 

[noblehead]

Only my opinion but your erratic diabetes control suggest that you might have Brittle Diabetes:

http://www.diabetes.co.uk/brittle-diabetes.html

Has this been mentioned at all?

 

[donnellysdogs]

Brittle diabetes is only a diagnosis.. Not a way to manage your diabetes.

What I struggle with when reading OP post is that alot seems to be reliant upon medical care.... Self management is not really mentioned a lot. A hypo of severity of OP talks about is to me indicative of both nhs care and self care failing.

To get to such a hypo state there must have been a extreme occurence of sonething going wrong. Extreme hypo's like this (in my opinion only) do not happen as an everyday occurence... So there MUST be a cause... And a way to recify it.

Sorry, this is not all down to NHS care.....


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[iHs]

Hello Neil

Has your consultant applied to the ccg for cgm funding through the 'special needs route' at all? Doesnt seem right to me that someone like yourself suffering from dementia bought on from frequent hypos causing lack of awareness who would seriously benefit from cgm, should be denied???? Something is very wrong here
Have you had a quick look at this http://www.inputdiabetes.org.uk/wp-content/uploads/2013/04/Step_by_step_guide.pdf
Might be worth you contacting INPUT explaining your circumstances to see what advice they could give you. Would you be willing to travel to another diabetes clinic to see a different consultant at all?

 

[iHs]

I also meant to say that its all very well trying to keep bg levels fairly ok throughout the night but not so tight that hypos become a real risk as the body can and often does change its need for insulin and unless people get up in the night to test and eat something if need be, the tight control is going to be fairly hard to maintain with little need for adjustment to insulin or food.

 

[donnellysdogs]

Hypos cannot be linked to a direct cause of dementia....

Dementia has to be deemed as an additional illness to diabetes and hypo's as a reasoning towards getting a funded cgm.

Cgm usage from my hospital who used to fund cgms long term was removed...as benefits to a type 1 were not seen....


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[Neil Fowkes]

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.

 

[Totto]

I have no knowledge of what kind of long-term risks hypoglycaemia poses, but there is a solid and growing body of evidence that hyperglycaemia causes dementia. A few links:

http://www.cell.com/cell-metabolism/abstract/S1550-4131(13)00143-5
http://www.newscientist.com/article...tes-the-same-disease.html?page=1#.UvnJfLSNV1N
http://www.nejm.org/doi/full/10.1056/NEJMoa1215740#t=abstract
http://archneur.jamanetwork.com/article.aspx?articleid=1697444

 

[Scardoc]

As far as I'm aware being T1 diabetic pretty much makes you susceptible to anything and everything.

That's my experience from speaking to the doctor, physio, dentist, optician and chiropodist!!

 

[Mud Island Dweller]

Scardoc so does life in fact lifes major side effect is death.

 

[Scardoc]

I live in hope that death's major side effect is life

 

[donnellysdogs]

Thsre has been no definitive results giving 100% on hypo's giving dementia.

I was sent to stroke n dementia unit too.. But they discovered mine was due to having B12 deficiency.



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[academicdiabetic]

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.

 

[academicdiabetic]

Hi Neil,

I hope your situation is improving. You do not say what levels of blood glucose you are aiming for (?) If you are having constant hypos to the degree you mention, you must, almost by definition, at those points be having too much insulin. It is not possible for someone with (Type1-style) diabetes to go 'low' without exogenous (externally introduced) insulin. So, however one interprets it, in respect of the hypos the insulin must be 'the problem'. What diet and exercise regime do you follow, what type and amount of insulin do you now take in a given day and what blood gluocse level(s) so you aim for?

Best of luck.

 

[noblehead]

TBH Brian I'd never heard of the term 'Brittle Diabetes' until I was speaking with a lady at my hospital who had it.

l

 

[jules65]

Hi Neil,

I hope your situation is improving. You do not say what levels of blood glucose you are aiming for (?) If you are having constant hypos to the degree you mention, you must, almost by definition, at those points be having too much insulin. It is not possible for someone with (Type1-style) diabetes to go 'low' without exogenous (externally introduced) insulin. So, however one interprets it, in respect of the hypos the insulin must be 'the problem'. What diet and exercise regime do you follow, what type and amount of insulin do you now take in a given day and what blood gluocse level(s) so you aim for?

.

Slightly off topic-ish, I have Brittle Diabetes because I have had my pancreas removed, so not only do I have no beta cells but no alpha either, so no liver dump as I have no glucagon to tell the liver to dump the stored glucose so even without exogenous insulin I can have a hypo