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

Discussion in 'Type 1 Diabetes' started by Loliz, Jan 23, 2016.

  1. Loliz

    Loliz Type 1 · Member

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    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?
     
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  2. Loliz

    Loliz Type 1 · Member

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    I should point out having just skimmed the post below this from tim? that my team is WONDERFUL and i've seen the same one for years and years. I couldn't ask for better.
     
  3. noblehead

    noblehead Type 1 · Guru
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    Hi @Loliz, a difficult decision for you to make when you weigh things up, but in answer to your complications question why don't you Google The Joslin 50, there's many type 1's who have lived with the condition for 50+years and have few or no complications.
     
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  4. CarbsRok

    CarbsRok Type 1 · Well-Known Member

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    Hi Loliz, I've had type 1 for 51 years with no complications. I do have other autoimmune conditions but no diabetes complications.

    As a matter of interest if you have no hypo warnings on analogues or synthetic insulin's why don't you go back to animal insulin?
     
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  5. Loliz

    Loliz Type 1 · Member

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    Hi noblehead and carbsrok, thank you for your replies.

    I'll definitely look them up, thanks, noblehead!

    Carbsrok, that sounds fabulous!

    I'm 45 years with it, and a bit irritated by the eye thing. I meant to say above that in the Independent Diabetes Trust newsletter there was a woman who was taking something called Pycnogenol, which is extracted from pine bark. she'd read that it could help with eye problems. She had been told she had subtle changes, too, and after taking the tablets her eyes recovered. I am now taking the pills and waiting for my latest eye results with interest...
     
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  6. noblehead

    noblehead Type 1 · Guru
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    @Loliz, if you want some great information and advice on diabetic retinopathy then have a read of the following:

    http://www.diabeticretinopathy.org.uk/Information_for_patients.html

    I've been free from retinopathy problems for 12 years now, I don't know about the pine bark supplement but keeping bg, bp and cholesterol levels in check helps immensely. My ophthalmologists isn't a great believer in supplements for eye health and just says a healthy diet rich in fruit & veg (the darker the better he says) gives enough nutrition for the eyes, I make a point of having a handful of blueberries everyday which I believe helps matters.
     
  7. Loliz

    Loliz Type 1 · Member

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    If diet helps then I should be fine - I eat a low carb diet, very high in veg (lots of brassicas!) and salad, and fruit including blueberries twice a day.

    My cholesterol is perfect. My blood pressure normal.

    BG is the problem.

    Will have a look at the link.
     
  8. RuthW

    RuthW Type 1 · Well-Known Member

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    I cannot see why you would go for a pancreas transplant. Your complications are relatively minor at this point, and don't have to progress.
    I've had T1 for 48 years (since I was five years old). I have Dupuytren's, but not badly. It isn't progressing. Hypothyroidism - I don't find that a problem. And I have very slight retinopathy, but it's not visible for me - it's not affecting my sight so far. Only the opthalmologist can see it. I'm very healthy and happy and I exercise regularly. I'm on a pump.
     
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  9. Loliz

    Loliz Type 1 · Member

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    Hello, RuthW, thank you for replying.

    The deciding factor for the Dr recommending a transplant isn't the number or severity of my complications, but the number and severity of my hypos. Some time ago these became more numerous I had a series where I became unconscious and wasn't found, on two occasions for over 2 hours. I work from home and on my own a lot so this is a concern. The 640G is keeping me so much safer with the smart guard but the sensors are not infallible. Plus, funding is not a definite... we couldn't afford them and my funding is on a need basis which has to be asked for (begged for) each year. With the way things are going I can see it being withdrawn and that is scary.

    So it's complicated.
     
  10. LucySW

    LucySW Type 1 · Well-Known Member

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    Loliz, I think it'[email protected] who has tried a new, private type of eye treatment for slight retinopathy and has found it helpful. Not nothing, but not incredibly expensive. Ask him.

    Also - keeping your standard deviation good is one of the best things for eyes. The easiest way to do that is to low carb. Presumably you've tried that out?

    You sound so together.

    I wouldn't go for the transplant, myself.

    Best of luck, Lucy
     
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  11. CarbsRok

    CarbsRok Type 1 · Well-Known Member

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    I asked in a previous post @Loliz and didn't get an answer. Why as you are hypo unaware on the analogue insulin's do you not go back to animal insulin's they can be used in a pump with no problem just set the duration of insulin to the correct level and away you go.
     
  12. Loliz

    Loliz Type 1 · Member

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    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.
     
    #12 Loliz, Jan 24, 2016 at 10:44 AM
    Last edited by a moderator: Jan 24, 2016
  13. CarbsRok

    CarbsRok Type 1 · Well-Known Member

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    I use bovine in my pump and find a duration of 6 hours is adequate for me some obviously need a bit more and all basal changes made 2 hours before needed and bolus 30 mins before meals seems to work very well for me. Did take a while to sort the basal but once done it was fab.
     
  14. Flowerpot

    Flowerpot Type 1 · Well-Known Member

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    Hi @Loliz

    I was referred for consideration for a pancreas/islet cell transplant due to having no hypo awareness but at about the same time I started using cgm with my Medtronic pump. I decided against the transplant route for various reasons, the chance of not making it through surgery and the potential complications from needing immunosuppressant drugs for life. I was too scared to pursue it at that time. It is a really tough call to make.

    I have got quite severe complications with sight loss, Charcot foot and neuropathic bone fractures plus CKD. I also use the 640g with Enlite sensors and have felt infinitely safer with that system in place although as you say it is certainly not infallible and the ongoing fear from missing a hypo does weigh heavily. My complications hit me hard and at a relatively young age. Despite having tight control for many years since my complications started, I can't stop the express train of complications from causing ongoing issues. My consultant has talked to me about there being a genetic disposition towards complications so I presume it also works the other way round offering some degree of protection from the worst diabetes can throw at you. There is also a helping of good or bad fortune thrown in.

    Losing hypo awareness is a game changer whatever age it happens and until I started going unconscious without warning and losing the chance to save myself I had no idea how much I relied on the element of self awareness that indicates something isn't quite right. I don't know what it's like to be in that position in my 60's as I haven't reached 50 yet but I do know what a hard decision it is to make about whether to consider a transplant. I wish you well with your choice.
     
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  15. Loliz

    Loliz Type 1 · Member

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    Yes. Did that. I was 6 hours, too. If my fingers get too bad I may well go back to it, but at the minute being able to bring down 'highs' quickly is wonderful - I couldn't do that on porcine, correction boluses took forever.
     
  16. Loliz

    Loliz Type 1 · Member

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    Thanks, Flowerpot, that is interesting. Yes, and your post brings into focus the reason for going back to analogue - bringing down those highs I see as very important, considering how bad my overall control is already. I'm so sorry to hear what it is like on the other side of the genetic throw of the dice. I'm 57 - you can't have a transplant over 60, as the chances of surviving the operation go down so quickly.

    I see I didn't reply to Lucy, thank you for that info, I will look into it. My standard deviation is appaling, lol!

    I do like animal insulin, I have to admit, and suspect that it gives you more than just 'insulin'... some sort of protection, so would prefer to be on it, really. Analogues aren't really insulin, and their similarity to human insulin-like growth hormone makes me worried, but the likelihood of it causing cancer has to be less than that of the immunosuppressive drugs.
     
  17. barbarapreston

    barbarapreston Type 1 · Member

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    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!
     
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  18. Loliz

    Loliz Type 1 · Member

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    Well... I think it is different for different people. I went to France this year for the first holiday for 15 years and the first time for a holiday alone and it was the most stressful week I have ever spent.

    Are you well and easily controlled? I think this is an important detail in the overall picture!
     
  19. CarbsRok

    CarbsRok Type 1 · Well-Known Member

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    Hi Loliz,
    You keep mentioning your problems with control/management, where do you think it's going wrong for you?
     
  20. richyb

    richyb Type 1 · Well-Known Member

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    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.
     
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