controversial views insulin

I'm no expert but you sound like a slow-onset type 1, just like me, so you are probably still retaining some beta cell function (well, you must be, otherwise you'd be dead already). That won't last forever, and you know what happens next.

In fact, you already know the answer to all your questions.

how do your family feel about this selfish approach to a condition that kills.
Is this "research" backed by anyone with half a clue or is it just a joke

You know the answers as you've asked before.
You probably have some residual insulin production, how long it will last, who knows? This possibly puts you in the same position of some type 1s who take the minimum insulin necessary to avoid DKA (mostly when they're adolescent who wrongly think that they are clever enough to control what they are doing). If they avoid DKA, further complications don't show up immediately, they are insidious and show themselves some years later. This isn't anecdotal, in one long term Joslin study women who took less insulin than they should, both died younger and had greatly increased rates of complications. It doesn't take too much searching on the internet to find people who very much regret doing this when younger.
I possibly have some insulin production left, so do half the people who have had type 1 for 50 + years. Why don't you read about those people rather than focus on problems?
50 Secrets of the Longest Living People with Diabetes Sheri Colberg is a book with positive accounts.
I'm extremely thankful for this residual function, it probably makes control easier. I also know that taking insulin may well help preserve it.... certainly the toxic environment of high glucose levels would eventually kill any remaining cells... but I doubt if anything we say will convince you.

increasingly cynical said:

Hi All,

I am now more than 2 years post being diagnosed with 'Type I' diabetes, with GAD well off the scale ( very high autoimmunity problem in other words) and, in reality have probably had this problem for around 10 years, with previous mis-diagnosis of the symptom cause. I have not taken insulin and despite dire warnings am not dead or blind, although it isn't fun and clearly there may be problems long-term.

You well not be blind, and may never see failing sight, but what about the damage that you don't see such as kidney's etc... And by the sounds of things already your body is struggling


Nevertheless the postings I view here do not encourage me to take an alternative approach. There are a raft of 'hypo' problems and other problems with insulin. Are people simply swapping one problem with another?

If you well controlled then hypos are not much of a problem, as to insulins sometimes you got to find the one that suits you best.. Once found no problems


Are there any other 'Type 1s' out there who are not taking insulin and are still alive? Are they happy? What are their BGs? What are they doing to improve their condition? Do people on insulin feel it is giving them the quality of life they want? How quickly did they move to treatmetn and has it achieved what they accepted?

Can't answer the first part as I take insulin.. Yes I do have quaility of life using insulin, if I didn't then I wouldn't have any life let alone consideration of quaility... At one point (long story) I was on oral medication when I restarted insulin therapy it SAVED my life

As the name says.. still cynical but trying to gather information from those 'at the front line'

Click to expand...

At the end of the day, do you want a shortened life where you feel pretty **** most of the time or do you actually want to live a life that's near normal and feeling fine most of the time? Your choice not mine or anybodies elses..

Me, Do I feel that I've swapped one problem for another set NO! I here to tell the tale.. Pretty good swap in my books..

before any kind of insulin was invented, diabetics would die a slow, painful death as their body shut down as it failed to process the massively high BG levels. Is Insulin for type 1's even a choice if that is the option?! I'd happily deal with a few hypo's to avoid that end..

You mention LADA, a different diagnosis from Type1 . Here is our community page info on the subject.

http://www.diabetes.co.uk/diabetes_lada.html

As for type 2's , there are many of us who are not only not on insulin but also control it without any medication whatsoever.

Deary me, haven't you got anything better to do? I know what you're up to my love, the 2nd post gave it away.

I had my diagnosis because of dka and I'm sure others would agree it is serious enough to warrant properly treating with insulin. Insulin saved my life and until There is a proper alternative Show me the insulin and not taking it would be SELFISH

1) LADA is defined in by Cochrane and the WHO as a slowly developing type 1 diabetes which presents as non-insulin dependent diabetes and progresses to insulin dependence ie People who have LADA will eventually become insulin dependent

Once you have become insulin dependent there is only one treatment ... insulin!
The Cochrane metaanalysis reviews treatment modes prior to dependence. If you are able to keep your glucose levels down with diet and exercise then fine . If drugs other than insulin work for a while, then again fine do what it takes.
2) To state that there is no evidence tthat high blood glucose levels and complications such as DKA , nephropathy , retinopathy and neuropathy are not related is sheer Alice in Wonderland.
The DCCT and Epic type 1 studies and the UKPDS in type 2 show quite clearly the long term consequences of high blood glucose levels and the benefits of good control.They followed enough patients for long enough to be able to calculate the odds of developing complications . Imagine you are a 43 year old diagnosed with diabetes. These are the ages you have a 50: 50 probability of sight problems through Retinopathy .
HbA1c Age
12%......48
11%......49
10%.....52
9%......58
8%......71
7%......95
6%.......151
Personally I prefer the odds at lower glucose levels, without insulin I'd be at the higher risk level instead of the lower odds.
Here's an account of a man who hadn't been forewarned, he didn't know about LADA and ignored his symtoms. Anectodal yes, but none the less true. If I knew that I had the condition and had the choice I'd rather not risk these consequences ( and incidently my own story is quite similar including the ending up with breathing difficulties and DKA.. I was lucky to get away with some mild background retinopathy and slightly reduced kidney function. )
http://www.malehealth.co.uk/node/19602

Why do I write this when I think that its a bit like banging my head on a brick wall, well
hopefully, any other people in a similar position who read this will realise that a cynical view may have serious consequences.

Hi increasingly Cynical,
In answer to your question I personally don't know of any type-1s who manage their condition without insulin. That is because there is no way of surviving without insulin if you're type-1.
When I was diagnosed 21 years ago, it was with a urine test at my GP, then the local hosp where i had blood test and was sent home in the afternoon with a pile of goodies, including insulin of course. I was concerned that no tests had been done to find out why my pancreas wasn't working and whether this could be a temporary malfunction rather than a life-long condition. I was 19 and very frightened. The reality is that doctors have been treating this condition for many years and insulin IS the only treatment and that is that.
I might be reading this wrong, but I get a strong sense from your posts that you are scared of the whole idea of injecting insulin and what it involves. That' s completely understandable and it seems you are looking to find any reason to avoid going on insulin by asking these questions. Can I reassure you that while low blood sugar is potentially serious, many type-1s can have hypos that don't even interfere with their day. I had one yesterday just as I was about to go on my treadmill, BG was 3.6. I had 2 squares of dairy milk and 5 swigs of lucozade, and as I felt fine, went straight on the treadmill for 25 minutes-no probs.
As for the insulin, hydrochrloric acid is naturally present in the stomach, and the preservatives, well I try not to worry about that one-it's a necessary evil. I take porcine insulin, which is the closest to natural human insulin and it works really well for me, I feel great and am fairly active. Being on the right insulin for you is crucial and it's a very individual thing-there are many types available, not just GM analogues; perhaps researching the different types may help you feel more confident in your decision.
Of course we'd all prefer not to be diabetic and have to take insulin, but it's keeping us alive and I'm very grateful for it and that I'm able to test my blood-sugar so easily with modern equipment-people didn't have it so easy years ago as you know.
If you're not taking insulin, are you checking your blood-sugar levels; and if so what are your daily levels like? What does your doctor think of your refusal to take insulin, I imagine he/she must be very concerned. And lastly, what's your diet like?
Jus
PS please take note of Pheonix's post!! I'm losing my sight due to a progressive condition called RP, which is unrelated to diabetes. I can assure you it's no fun and wouldn't recommend it. I can no longer cycle which absolutely breaks my heart. If there was anything I could do to reverse or treat it I would; I want to SEE my children grow up. I presume your sight is good and if you want it to stay that way I suggest you take action now!!

Excellent posts and advice from Phoenix and Janabelle. I cannot understand why anybody would want to put their health and possibly life at risk.......madness. IC, you need to take note of all that has been said here.......you won't get better advice anywhere else on the Net.

Ken

Hi, to answer the question, no, I don't know any type1's who live without injecting insulin. I do know people (from my clinic) who have endured massive complications with kidneys and their eyesight due to bad control when they were diagnosed many, many years ago. Bottom line, the limited insulin they injected once or twice every day wasn't enough to keep their BG levels at a low enough level although it was just enough to stop them going into DKA. Now they have blindness, kidney failure and possible amputations to look forward too. I guess no one can tell that they would have died without the basic insulin management they had in the early days but I think the results speak for themselves. I feel privileged to have insulin available to help me control my BG levels to enable me to keep blindness and amputations (from high BG levels) at bay. My cannula became dislodged the other day and I went from 7.1 to 18.2 within 2 hours (although I had eaten so the bolus hadn't got through). If that doesn't tell me that insulin is a must for me I don't know what does!! :lol:

To be honest you sound like an idiot. You also come across as intelligent so I would suggest you are probably not as daft as you appear.

Please bear in mind that young children may be using this website as a way of getting advice on how to deal with their condition. If they read about a T1 that is against insulin use and boasting that they have none of the terrible issues associated with the disease they may end up deciding to follow in your footsteps. Hopefully they would read all of the other useful posts on the site but can you imagine if a young kid decided to follow your lead and ended up dead?

Everyone is entitled to an opinion and debate is definitely good but I urge you to think of the bigger picture before you throw your views around about seeing insulin as a bad thing.

To answer your question you are the only person I have ever heard of that is a T1 and is not treating with insulin (other than a few people who tell me they eat zero carbs).

JC

Hi IC.

I am very happy with the insulin regime I am on. It is acheiving exactly what I expected. I feel 100 times better than pre-diagnosis, with energy levels a lot higher, a healthy weight and body shape being maintained, much better complection and positive attitude to life.

On the rare occasions when i have forgotten to take my insulin (lantus or novorapid) I have have felt like ****. I forgot my lantus last Friday night, due to my night-time routine being messed up. Even though I injected in the morning, I struggled with my bg levels all day. I consequently felt tired, snappy and irritable all day. I injected my lantus on the Saturday night and continued to feel the effects until around Sunday lunchtime. With my body back in balance, and levels controlled again I finally got my moods and emotions back on the level, allowing me to enjoy the rest of the weekend.

I moved onto insulin directly on diagnosis and would hate to imagine what would have happened had I not. At the age of 29 I was lifting weights to increase muscle size around 3 times a week. I was 6'4" and weighed around 10.5 stone.... those two statements don't tally. My mother guessed I was diabetic simply by listening to my symptoms over the phone. My mother in law diagnosed it the minute she saw me (she used to be a nurse). Since diagnosis I have never suffered any ills from low blood sugar other than sweats, hunger and slight lack of concentration. I am now a healthy 13.5 stone and have put on the muscle bulk I was looking to before diagnosis.

To balance your raft of hypo problems, here are some examples of what lack of insulin and high blood sugar levels can do:

http://www.guardian.co.uk/world/2009/aug/02/us-daughter-pray-death
http://www.msnbc.msn.com/id/36028007/
http://diabetes.about.com/b/2008/03/06/undetected-type-1-diabetes-leads-to-tragic-death.htm

Hope that helps in your quest for information.

Are you still flying the helicopter?

Sam.

JC

I would doubt the ones who say they T1 and use a zero carb to control rather than insulin are telling you porkies... I say this from experience my original diagnoses was clouded (long story) my 1st consultant’s clinical judgement was T2 because original diagnoses was at the very same time it was confirmed I was pregnant... To cut a long story short I ended up using a zero carbohydrate diet + oral medication to no avail, my GP instigated an emergency referral to another Endo consultant who’s clinical judged that I had always be T1 diabetic but slow onset... In fact the consultant actually introduced me to an doctor over seeing one of his clinics, as his little miracle explaining that when he first saw me, I was nothing but a skeleton (6 ½ stone, even now at 8 ½ stone I’m considered to be borderline underweight) I was so poorly that he was shocked that I was able to walk into his clinic, I was the worse he had ever treated... He really didn’t know how I survived, apart from the fact my body had gone into some form of fighting mode, as by this time I had surpassed constant fatigue and my body had gone into over drive as I never slept I would be lucky if I had a nap every 24 hours or so... Every endo/consultant whose read my medical records since, can not work out the whys behind my first consultants clinical judgement of T2 diabetes, let alone the allowance of my situation to continue...

Cynical
I don’t believe that there is an alternative to injecting insulin for T1’s maybe at the beginning when in honeymoon period and the pancreas is still able to produce some insulin or for those that have a slow on set type of T1 then an alternative method might maintain some control... But as my experience shows that there is a time when injecting insulin is the only way... Believe me, going through this time was a living hell beyond believe.... The fatigue started first, sleeping literary for days at a time waking to a very foggy world every now and again, followed by the inability to sleep I would doze for around a hour, then spend the next day or so awake which was nothing but mental torture, I was unable to look after my children (they went back to there dad) my partner walked out on me, I was so horrendous to be around, it was the Smaritains that convinced me to go to my doctors... Injecting insulin has gave me everything back, my life, my kids my partner who walked out on me, he bumped into as I came out of the hospital, decided that it wasn’t wise to start insulin when I was on my own, so he stayed at my house sleeping on my settee with the intention of just staying for a night or two but he’s never left and we’ve been happily married for almost 11 years now...

jopar it's nice to hear something happy and positive you've cheered me up thank you

Fantastic post Jopar

What a great outcome from a horrible situation.