Long term complications - how many have them, how many don't?

Loliz

Member
Messages
18
Type of diabetes
Type 1
Hi Loliz,
You keep mentioning your problems with control/management, where do you think it's going wrong for you?

I don't know. If I did, perhaps it would be easier to do something about it. Everything seems to affect my control - being hot, cold, worried, stressed, happy, sad, concentrating... and sometimes the aforementioned send me high, at other times, low. So hard to predict.

If you look at the graphs from my pump, they are all over the place, no patterns, yet I work from home and do and eat almost exactly the same things every day.

Having said that, some progress has been made by the new 640 pump as because my unexpected lows are headed off, i don't rebound upwards, which means less time both low and high.
 

Loliz

Member
Messages
18
Type of diabetes
Type 1
hi
i have had type 1 for just over 50 years now 63 yrs old. After 40 yrs I was rushed to my doctor with sight problems(bleeding). Several laser treatmants to both eyes. I only just managed to keep my driving license. Vision is very spotty and have lost a lot of side vision. I have always worked and would like to get a pump as my injection sites are begining to suffer. My last hba was 50, previously I was advised to raise my level from my usual 47 by my doctor.

It's almost impossible to tell what is going to happen, but the sound of it, sorry to hear about your eyes, richy.
 
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LucySW

Well-Known Member
Messages
1,945
Type of diabetes
LADA
Treatment type
Insulin
Its fine being an old diabetic,am now 72 and will have been diabetic for 62 years next week.The only health problems I have are high blood pressure and high cholesterol both of which are under control with medication and seem to apply to many pensioners.About 10 years ago I saw my consultant ,hadn't`seen him for 30 years, he ran a full range of tests including heart and kidney functions.Everything was perfect ,there was no sign of diabetes anywhere even in my eyes. He concluded that I must be one of the lucky 5% genetically protected from the complications of long term diabetes.I am however having cataracts removed from both eyes in March and April but that applies to many people of my age.My husband ( type 2 for18years and no problems) and I lead a very happy life,we holiday when we can and enjoy our friends and family.I already have the 50 and 60 year medals from Diabetes UK and hope to reach the 70 year medal in due course.Diabetes may be a life sentence but its not a prison sentence!
How fantastic to hear from you! You're an inspiration and model for us all.
 

jackie4617

Member
Messages
20
Type of diabetes
Type 1
Treatment type
Insulin
I don't know. If I did, perhaps it would be easier to do something about it. Everything seems to affect my control - being hot, cold, worried, stressed, happy, sad, concentrating... and sometimes the aforementioned send me high, at other times, low. So hard to predict.

If you look at the graphs from my pump, they are all over the place, no patterns, yet I work from home and do and eat almost exactly the same things every day.

Having said that, some progress has been made by the new 640 pump as because my unexpected lows are headed off, i don't rebound upwards, which means less time both low and high.
hi loliz,
i no exactly how u feel, i also ave diabetic chieropathy which is rarely discussed i think also ave neuropathy, bin diabetic 40yrs cum april & on 5 jags a day 3 short acting 2 long actin, blood sugars continuously up & down no matter wot i do & no longer ave ne awareness of hypos or hypers
 

bambee3

Well-Known Member
Messages
46
Type of diabetes
Type 1
Treatment type
Pump
Dislikes
Avocado, Olives, Prunes,
Hi,
I am ? t1 ?t2 they can't make their minds up. I have been ? diabetic since I was 16yrs and 9mths old. No treatment or confirmation of diabetes until I was 35yrs old. I am now 55.
I had my large bowel removed in 1999 which they now are sure is related to Autonomic nervous system dysfunction diagnosed a couple of years ago. My bowel would contract and not work. When this happened they were ? my autonomic system back then but nobody mentioned this to me. I have lost control over my blood pressure and heart rate due to the autonomic nervous system dysfunction which means my heart rate has been as high as 150 + beats/min and my BP has crashed as low as 40/50 this is the lowest recorded we know of. I am prone to passing out with little or no warning and have to be careful. I also have dupuytrens in both hands, so far not progressing much since diagnosed a couple of years ago. Due to having no large bowel I have to keep my fibre intake low. My eyes thank God are still reasonably ok. some minor changes only. I have glasses for distance and have for years now. I have also been told years ago by a Diab Ed that I am Carbohydrate sensitive as i was having to take such large amounts of insulin for a meal. This has since been halved since being on an Insulin Pump - best move ever. Also diagnosed with mild to mod sleep apnoea. Have a heart murmer, also when they did the tests that diagnosed autonomic nervous system dysfunction they listed +/- inappropriate sinus tachycardia. But hey it could be worse.
 
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CarbsRok

Well-Known Member
Messages
4,688
Type of diabetes
Type 1
Treatment type
Insulin
Dislikes
pasta ice cream and chocolate
I don't know. If I did, perhaps it would be easier to do something about it. Everything seems to affect my control - being hot, cold, worried, stressed, happy, sad, concentrating... and sometimes the aforementioned send me high, at other times, low. So hard to predict.

If you look at the graphs from my pump, they are all over the place, no patterns, yet I work from home and do and eat almost exactly the same things every day.

Having said that, some progress has been made by the new 640 pump as because my unexpected lows are headed off, i don't rebound upwards, which means less time both low and high.
Funny enough I was exactly the same except I didn't go above 10 very often, it got to the stage at one point where I was having 56 hypos a month................ diagnoses Addison's disease still had problems due to my basal not matching any insulin on the market.
Changed to a pump and it used to be a case of chasing my tail every few days because the basal changed so often, then it changed to every 2 weeks when a change needed to be made then 6 weeks and now it's almost four months where just a very tiny tweak needs to be made.
It worked out to be a sinus infection eating into my bones that's now fixed, the infection had made my autoimmune system attack some part of my spinal cord sheath causing an inflammatory lesion now its starting to resolve the improvement is massive.

So for me it was a case of constant basal tweaking :( which was a royal pain in the you know what which kept me in range most of the time I also found not eating to much protein also helps no end as never could fathom the dosage or predictability of results.

You have probably already done so but have you tried going right back to basics and setting a brand new basal profile and building from there? Many of us also found the book pumping insulin a great help as well.
 

barbarapreston

Active Member
Messages
27
Type of diabetes
Type 1
Treatment type
Insulin
Dislikes
Large dogs, loud music and bad language
How fantastic to hear from you! You're an inspiration and model for us all.
Thanks Loliz and Lucy SW,No ,to be honest I am not that well controlled my BS can range from 2.5 upto 19 in any one day.But I then either eat jelly babies or have an additional shot of Novorapid.Nothing seems to have any effect on my body.I never get any other health problems and feel well the majority of the time.I don`t count carbs and eat what I want within reason.I have been married three times(divorced then widowed) and have been happily married for 33 years. I reckon I have been very lucky but am certainly not a role model for diabetics.
 

cathayb

Member
Messages
6
Type of diabetes
Type 1
MY LEGS WHICH I HAVE lymphedema. in are continiually leaking water soaking my socks and my bed and anywhere i go.does anyone know how this can be managed??i cant take anymore duritics other than frusimide as my kidney function is not good.the leaking is driving me mad.how can i stop it??
 
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NurseDee

Well-Known Member
Messages
129
Type of diabetes
Type 2
Treatment type
Tablets (oral)
Hi cathayb. Sorry to hear the problems with your legs. I understand why diuretics are not suitable if your kidneys are not doibg so great.

I would get in touch with my GP as they can check your legs and rule out infection first then send you round to their treatment room nurse. She will be able to dress your legs and it may be that you will be given a doppler and compression bandaging depending on your doppler result. Some GP practices also have Lymphedema nurse specialists on site who will be able to help too. Hope this helps.

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cathayb

Member
Messages
6
Type of diabetes
Type 1
Hi cathayb. Sorry to hear the problems with your legs. I understand why diuretics are not suitable if your kidneys are not doibg so great.

I would get in touch with my GP as they can check your legs and rule out infection first then send you round to their treatment room nurse. She will be able to dress your legs and it may be that you will be given a doppler and compression bandaging depending on your doppler result. Some GP practices also have Lymphedema nurse specialists on site who will be able to help too. Hope this helps.

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thank you very much.we live in a rural area so not sure they will have anyone that can do this but will try.
 

NurseDee

Well-Known Member
Messages
129
Type of diabetes
Type 2
Treatment type
Tablets (oral)
A doppler is a mini ultrasound scan to measure blood flow/pulses and circulation in your legs. Hopefully they have a trained nurse to do this for you.

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cathayb

Member
Messages
6
Type of diabetes
Type 1
A doppler is a mini ultrasound scan to measure blood flow/pulses and circulation in your legs. Hopefully they have a trained nurse to do this for you.

Sent from my SM-A500FU using Diabetes.co.uk Forum mobile app
we went to the doctors today and apparently i have another dose of cellulitis but it has shown itself with different symptons for the first time in my life so i missed that is what it is.now on a course and antibiotic injections.apparently the terrible back pain i am having confining me to a wheelchair is all part of it and is causing muscles spasms in my back.so i feel i have got somewhere with the GP today.tomorrow i see my endreocologist at the hospital and my kidney function has dropped to 31 but i am hoping now they have stopped one of the duritics they will be recovering soon.thank you for your help.
 

Dark Horse

Well-Known Member
Messages
1,840
I am a type 1, diagnosed at 12, now 57.

Last time I went to have my eyes looked at, I was told in the letter there were 'slight changes'. Until then, my eyes were fine.

I have no neuropathy.

I do have Diabetic cheiropathy and Dupuytren's contracture and arthritis in my hands.

My kidneys are working at 98% - normal.

My heart is fine and so are my veins and arteries.

Having had a DVT when I was 18, I do have some lymphedema in my legs. Since it's in both legs (the DVT one worst)I presume this is a diabetic complication as well. Since lymph in the cells will stop oxygen getting to the nerves I do wonder if this could be one of the reasons people get nerve damage. Particularly as our lymph will be rather glucose ridden. I have solved this problem by getting a Hivamat machine which uses electrotherapy to clear lymphedema and it has worked. I've noticed my insulin also works better when injected in my legs now.

These are all the complications I have, despite having very hard to control diabetes, with no warning symptoms (disappeared with 'human insulin in 1982) and a lot of hypos.

I have been on a modern insulin pump since 2000, but trialled one of the original pumps in 1982. I now have a 640 G with a continuous sensor and it is fab. I also have an assistance dog.

I have been offered a pancreas transplant. i am talking to the teams about this. I am very unsure. Mainly because so far I am without too many pesky complications.

I'm finding it hard to decide - a pancreas transplant gives you on average 7-8 years of not being diabetic. For that you have a 3% chance of dying at or around the time of the transplant, have to take immunosuppressant drugs for the rest of the life of the transplant, increase your chances of getting cancer a lot, skin cancer even more, and lay yourself open to many infections including those already in the body (not laid out for me but have read forums, so candida, the complications of chickenpox (shingles) and I suspect if you've had cold sore, herpes and things like that. What is more the drugs attack the kidneys and you lose kidney function - if it is already waning this is more of a problem but even so, this worries me, as when the transplant fails, I don't want to be needing two transplants, as having one already predisposes you to less likelihood of a god outcome next time because of antibodies.

Against that I have to put the likelihood of dying from a hypo (put at 1% per anum until you die of other things, presumably, if not that!) and also COMPLICATIONS.

What I don't seem to be able to find out is - how likely are complications if you've had it a long time and seem to be genetically protected to some degree.

I suppose what I'd like to hear from are diabetics who were fine until 60 but then went downhill, or those who were fine till 60 and are still well and fairly ok at 70, 80... are there any in their 80s here?

What's it like being an old diabetic? Miserable? Bearable? Fine? Would you have taken the risk and had a transplant to have some diabetes free years?
Is this a possibility? http://www.diabetes.co.uk/hypo-alert-dogs.html
 

Gaztheoldpunk

Active Member
Messages
33
Type of diabetes
Type 1
Hi, Im aged 50 and been diagnosed T1 for 32 years.. The only complications I have is neuropathy in my feet which I've had from day 1 tho the circulation to them is fine!! And also macular degeneration which I'm being treated for and have been for the past 20 years... I can still walk (and run) and my sight is relatively ok. Bearing in mind for the first 10 years I was in total denial of my condition I think I've been lucky... It could have been a lot worse!!


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cathayb

Member
Messages
6
Type of diabetes
Type 1
Oh dear....thats a sore infection but i am so glad you are on the road to recovery

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now in hospital.started seeing people that werent there and didnt recognise mum or husband even though thery were right beside me.i have had a catherter fitted and they are measuring fliuid and intak onlu all 1500ml per day.having trouble eating as my mouth is full of ulcers.my kidney function down to 25 and i have dangerously low potaasuim and sodiem.feeling quite concerned about myself now.cam in late thurs day night and i am on strong doses of antibiotics for the cellulitus,heporim and i dont know what else.taking orimorph for pains in back and legs.let you know when i get home(if i do)
 

ann34+

Well-Known Member
Messages
393
Type of diabetes
Type 1
Treatment type
Pump
Oooh, didn't see that CarbsRok. I was on animal insulin in my pump for years. It did not help me regain my hypo awareness symptoms, sadly. It did make me feel healthier, it did help with my hands, but it did not help with my control - ultimately, I am better controlled on analogue insulin, so decided in the end that better control was better and sacrificed my hands (which, sure enough, got worse as soon as I started it).

Having said that, pork Actrapid was fine, when they stopped making that and I had to go onto Hypurin, my control got a lot worse.

hypurin porcine is not really an 'away you go' sort of insuli in my experience. It seemd to be taken up very unevenly by me.

'Human' insulin was the insulin that brought in hypo unawareness, not analogues. Although the same thing happens with them.

Hi. Loliz. I would not say it is easy getting older as a Type one - some may be lucky but a lot of people who do not have Type one get other health issues in their late 60's - the problem is, what happens when a type one gets similar problems? In my experience, type one complicates things, and may even make these issues a lot worse for a number of reasons. If you were to get these problems in the years after transplant, how would your body cope with anti rejection drugs as well? Maybe you could look into things in more detail. ask more questions....look at your family health history? Agree re Hypurin, i use it but it is the slowest porcine insulin i have used, and i have used a number of them in the past - strange that the faster ones, especially pork velosulin, were taken out and only the slowest porcine left. I am in a somewhat similar position as you - though still on Hypurin at present - I need to have a faster insulin due to problems taking ages to bring highs down and the effect of more prolonged high glucose on the conditions i now have. (which themselves may or may not be somewhat related to diabetes, but they certainly make diabetes more difficult to manage) .Have you ever tried, or considered trying, or ever asked if you could try, Hypurin in the pump but analogue insulin just for boluses to correct?
 
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David1963

Member
Messages
7
Type of diabetes
Type 1
Treatment type
Pump
Dislikes
Celebrity culture
It's almost impossible to tell what is going to happen, but the sound of it, sorry to hear about your eyes, richy.
I had bleeding and spots/lines in front of my eyes back in the mid 1990s, and have had a lot of lazer since then, with sometimes more complicated interventions but my eyes are fine. Loss of peripheral vision means I havent been able to drive for a while but I can still do all the reading, cinema going etc I want etc. I suppose I'm saying that there may be problems but they can be overcome, and a quarter of a century ago terchnology was not as advanced in this area. Make sure you get to see an eye doctor regularly.
 

SugarBuzz

Well-Known Member
Messages
111
Type of diabetes
Type 1
Treatment type
Insulin
Dislikes
**** doctors. Airport travel.
I am a type 1, diagnosed at 12, now 57.

Last time I went to have my eyes looked at, I was told in the letter there were 'slight changes'. Until then, my eyes were fine.

I'm not close to the age group you're wanting to ask....but regarding the 'slight changes' letter. When did you receive your last letter? As I'm aware they seem to have changed the wording of these sometime within the last couple of years.

As I got the 'slight changes' letter several times in a row and was thinking, ***? surely several years of slight changes means more than a slight change?

The last letter I received around 18 months ago didn't mention slight changes.