Great advice from a physio for those on steroids.

When a running friend of mine heard that I had Addison's disease, what was her first comment?

"I hope you're doing your upper limb weight bearing exercises"

She wasn't going to tell me how to suck eggs, but she thought that this advice was particularly important because
1. Surgery for osteoporotic upper limb fractures in steroid users happens way too often at our local trauma hospital, and
2. Despite point 1, she knew it was very unlikely that any Canberra doctor would have given me that advice.

85 years with T1 diabetes. How did he do it?

Although it is now a few years since Bob  Krause died after living with type 1 diabetes for 85 years it is important to remember how he did it.

His regular diet was low carb and very low GI. Nuts and prunes (GI about 30) for breakfast, often no lunch, and meat and salad for dinner. ( sources differ, but not by much)
He used extra carbs on active days. Prunes may not be approved by the hard-line VLCers, but there is no argument about the low glycaemic load. He got plenty of fat from the nuts and meat.

There is no way that the Australian medical establishment would approve of such a diet. A Australian dietitian has recently been de-registered for promoting an eating pattern similar to this. Yet it got Bob to the age of 90.

Case study of one you say? Show me just one diabetic in good health who has made it to old age without some form of glycaemic load reduction, be it low carb, low GI, or just skipping dessert when all their friends didn't. Case study of zero.

Almost as important as his diet was Bob's education. He was a mechanical engineer. He knew how to model inputs and outputs of a system mathematically. He knew how to titrate inputs to effect. No, he didn't have formal education in the biological sciences. Not important.

My own informal study many years ago found that the majority of diabetics who met my pre-determined definition of being very successful had formal tertiary education in the non-biological sciences.  My survey turned up many graduates in the hard sciences, but no lawyers or nurses, and perhaps most interestingly, no doctors who did not also have a science as well as a medical education at university level.

If one of your kids gets diabetes in their early teen years, you should look with more modern data at what sort of educations are associated with good diabetic outcomes and steer them in that direction, or at least give them the facts so they can make up their own mind.

Addit. 19.12.15 On second thoughts, his education was actually more important than his diet, as it was his education that led him to reject medical "evidence" and design his own diet.


added 1.3.16
To those readers who call my stories on Winsome and Bob selective information presentation, please forward me details of any or all similar Type 1s who have done as well by eating a population average amount and type of carbs as part of a low fat diet, and I will gladly include them here.
I have been unable to find any myself in my online sampling.

I never inject insulin at the recommended abdominal site

No Abdominal Site Administration, or what I learned from NASA and the Challenger disaster about diabetes. My essay on one of the reasons I use non-approved sites has been accepted for publication. You may see it in an upcoming issue of a local diabetes mag in edited form. If it is too heavily edited I will post the full investigation results on my blog.

I used to donate blood, until I learned how much was wasted.

There is ample evidence of overuse of donated blood products by doctors. One contributing factor must be the obscene financial incentives for doctors to give a patient a blood transfusion, rather than use a colloid or electrolyte solution.
Item number 22002 in the Medical Benefits Schedule pays doctors a large amount of money on top of their already generous remuneration if they choose blood rather than another fluid. The amount doctors receive depends on what billing schedule is in place.
The AMA List, which many doctors use, values this "service" at $324.00! That is an additional amount, on top of the usual fee. Nice work if you can get it.
Of course patients who require blood are often sicker, take more time, or may be having more complicated procedures than others. These factors are all separately compensated in the Medical Benefits Schedule.
And ill patients still require close monitoring, irrespective of whether they are receiving blood or colloid.
The Health Minister, Ms Sussan Ley and her Government are now proposing to fund this growing largesse by imposing the GST on fresh food. The inertia of bureaucrats responsible for the MBS, and the propensity for Australians to only voice their opinion after legislation is in place make this increasingly likely.
There are also financial incentives for hospitals to favour blood transfusion, but that is another story.
Let the Health Minister know what you think.

Yet more evidence of poor medical outcomes

The Australian Addison's Disease Association website addisons.org.au contains 15 stories of typical patients. Read them all or just read on to see in summary what average patients are like well after the difficult period around the time of diagnosis is passed.
1. Crisis, doctors clueless
2. Several hospital admissions for Addison's
3. Absent from school often
4. Lethargic, underweight
5. Several crises. Used to sprint, now can only jog
6. Very vague sometimes, forgetful, not fit enough
7. Underweight, teary episodes
8. Multiple crises
9. Retired early due to not coping
10. Feels "not right"
11. Crisis. Firing on 5 cylinders rather than 8
12. Fatigues, osteoporotic
13. Given wrong drugs, health slipping
14. Multiple medical problems, health delicate
15. Overweight, fatty liver, unstable

Equivalent websites for people with type 1 diabetes are replete with stories of success. Not so Addison's. Is there anyone in Australia with Addison's disease who is doing well on standard treatment?

My brain used to go fuzzy. Now it doesn't.

When I followed standard medical protocols for diabetes, my brain used to get the fuzzies at a much higher blood sugar. I still get the physical symptoms when my blood sugar is low, but not the cerebral dysfunction.
Half an hour ago, my glucometer read 1.8 (32mg/dl). Without eating, I then defeated my chess program Fritz (V8, error level 1.0/10, lightning) several times, before re-checking my bsl on my spare glucometer.

Why does this matter?
Doctors refuse to even entertain the possibility that the treatment they are prescribing affects the level at which patients experience cerebral dysfunction. Of course there is no evidence from clinical trials of harm from standard treatment because doctors refuse to collect that evidence, and no one else has access to the data.
If your brain goes woozy at a bsl of 3.5 (63 for the non SI), don't accept that as normal for diabetics, or assume that it will always be the case. Do something about it.

You don't have to believe me. Look for yourself at the non-existent peer-reviewed medical evidence base on this topic. Doctors just pretend to be knowledgeable on the topic.

note : looking at local chess club results, I figure 99.5% of the adult population can't play chess at this level, even with a normal blood sugar.

Yet more deaths due to Addison's in Australia

Yet more deaths. 20 kg unintended weight loss and still not tested for Addison's. I offered to talk to doctors about Addison's before these people died. The professor said "No one is interested"

Half marathon training run

UNSW to North Bondi and return. A bit too hot and humid for a Canberra lad, but very scenic.

Why are treatment outcomes so bad?

Doctors excel at making statements about what Addison's treatment results should be.
"Addison's should no longer be fatal"
"There is no reason why someone with Addison's disease couldn't climb Mount Everest"

The reality is quite different
The largest study I have come across found a mortality rate in some males more than double that of the general population, and a reduction in life expectancy of 11.2 years.
A recent study conceded that "quality of life in adrenal insufficiency is more severely impaired than previously thought and patients .. are also threatened by an increased mortality"
Fatigue is rampant.

 I have scoured the English language internet for successful people with Addison's disease. I was never very athletic at school but I am keen to improve and learn from people who have done well.
Being competitive, I would love to find people who who are doing better than me so that I have something to aim for. I would hate to think that how I am now is as good as it gets for people my age with Addison's.

The news is not good.

Many of the hero patients that my endocrinologist recommended that I follow 18 years ago are now beached whales, performing much worse than me, or dead. Success at age 40 obviously does not guarantee success in later life if you follow standard medical advice.

The Addisonians that are running fast, rock climbing and BC skiing are all much younger than me. I note that their regular daily steroid regimen (as opposed to competition day practice) is quite different from what Australian endocrinologists recommend in nearly all cases.

If you are looking for people with Addison's and diabetes getting out there and doing stuff, forget it. I found one older guy who seems to have his act together. From what he has written, I surmise that his diet and drug management are also vastly different from what Australian doctors currently recommend.

The internet evidence is consistent. If you follow standard medical advice, you are unlikely to do very well, and will plagued by fatigue, particularly as you get older.
Caveat Emptor

Guide to medical specialists

As a diabetic, perhaps with several associated medical or surgical conditions, you will no doubt come into contact with many different specialists. Here is my guide to them

ENDOCRINOLOGISTS
These doctors think they are the duck's nuts because some of their patients do so well. What they don't realize is that all of their successful patients lie to them (and their dieticians) about what they eat, how they manage their insulin and testing, and other aspects of diabetes control. Their success is entirely due to the fact that many patients ignore what they say.

ANESTHESIOLOGISTS
50 of them on the public payroll where I live, on contracts that include involvement in research, yet not a single piece of output worth presenting in a two year period. Truly the bottom of the heap academically.

PATHOLOGISTS
You have heard of futile surgery and ICU admissions for patients with no hope of survival, and the mind- and budget-blowing costs associated with this practice.. Yet when one of these people inevitably dies, wasting an extra $A100,000 on an inquest is a decision made by a pathologist. Is it really worth spending that much extra money after someone with a logistic Euroscore of more than 80 dies? And that decision is made by someone with no tertiary education in maths. Go figure.

PSYCHIATRISTS
Look up the role of psychiatrists in suppressing scientific dissent, and their involvement in silencing whistle-blowers by questioning their mental fitness. It is all true. Surely the lowest ethically. Almost as bad as lawyers.

RADIOLOGISTS
At the first house auction I went to, I had no hope of competing against bids put in by a radiologist, who then put a big extension on the already huge house. Radiologists obviously get paid way too much.

SURGEONS
When I had a large malignant tumour in my abdomen in my early 20s, surgery cured me.
When subluxing peroneal tendons prevented me from running, surgery cured me.
When I couldn't climb because of a fractured glenoid and ruptured long head of biceps, surgery cured me. Look at the video.
When I was completely disabled by chronic back pain, the GP, physician and physio all told me to take vast amounts of potent drugs and do physio. After surgery, I needed only paracetamol for a few days, and in the 10 years since then, haven't taken a single pill for back pain.

Yes, I am a walking (and skiing, climbing and skating) advertisement for the marvel of modern surgery.

What are your objectives?

People's actions can be misinterpreted if you don't know what their objectives are. Often, quite similar objectives can require quite different approaches. In the picture above, many asked why the final runner in the relay team still has the warp drive engaged when victory is in the bag and she should be doing a celebratory run in with her team mates.

Her objective at this stage is not to win the race. There is an informal competition between kids, and some adults to see who can get the fastest finish split. It is a bit like the yellow and green jerseys in the Tour de France. It often goes to a person who is not the overall winner. More categories of winner increases the fun factor.

What are your objectives in managing diabetes? Do you want the lowest HbA1c? the lowest cholesterol? do you want to avoid your blood sugar every falling below 3.1?
None of these things rate highly on my agenda.
Getting a life certainly does. Devoting lots of time and effort to achieve perfection in blood sugar control would make me just as much a victim of my disease as would complications.
Getting wrapped in cotton wool is a potential complication of diabetes.

The other problem of obsessing about blood sugar is that is not the main problem. As the endocrinologist said to a friend the other day. - Don't worry too much about your blood sugar. Most diabetics die or are disabled by cardiovascular disease.
Focus on your CVD risk factors. Start by asking yourself how many dozen of them can you name.

It is 40 years since I wrote my first essay on climate change.

It is now more than 40 years since I wrote my first school assignment on climate change and related environmental issues.
Nothing has changed, except for atmospheric CO2 which keeps rising.
The elephant in the room is still being ignored by people who claim to be climate change believers. (no, its not coal or oil)
Diabetics are no different.
They too stubbornly refuse to do the maths.

Doctors and climate skeptics alike play the not-enough-evidence card without actually thinking. If a randomized trial is the only thing that will make doctors change their mind, then it is not surprising that their patients are not doing so well.

Why are doctors withholding information from you?

The ACT Health Research Review 2011 & 2012 makes great bedtime reading. No sleeping pills required.
It contains details of many hundreds of audits, QA and research projects from virtually every field of health. With a number of notable deficiencies.

Anesthesiologists, or anaesthetists if you prefer, have not made any contribution at all. Not surprising, given that they are essentially practical people with very little understanding of basic sciences.

And the only audit of clinical results in Type 1 diabetics is one study of patients changing to pumps, who were not compared with any alternative treatment group. There was no study of any lifestyle adjustment, or measurement of outcome from any lifestyle advice.
It seems doctors believe that technology in the form of pumps and continuous meters are going to save everyone from what years ago would have been called a self-destructive lifestyle.
Despite massive expenditure on DNA and receptor studies over decades, diabetics are now suffering from complications, fatigue and impaired lifestyles in record numbers if internet forums are to be believed.
If you don't believe the internet, where is the formal data?

Have doctors not audited their own performance,  or have they suppressed the results because they are so embarrassing?

ps more on suppression of evidence from Fiona Godlee, editor of the BMJ in my post of 1.2.2016

Diabetes doctors are the worst food nazis

Many decades ago, food recommendations for T1 diabetics were simple. No more than 2 pieces of bread for lunch, no more than 2 tablespoons of mashed potato for dinner, and eggs for breakfast was fine.

The rules were simple and easy to comply with. They worked fairly well as the number of T1s in their 80s shows. There were few restrictions, apart from carbs.

Look at the recommendations now. Various Government websites advise diabetics to seriously limit their consumption of eggs, eat reduced fat cheese and drink low fat milk. And eggs are not to be fried.

When was the last time you heard a foodie advocate that lattes be made with low fat milk? When was the last time you heard Will Studd go into raptures over the taste of a reduced fat cheese?
I love my eggs cooked in butter. I love full fat cheese. I love omelettes. I love full fat cheese omelettes.

Doctors advocate artificially sweetened yoghurt. No way am I using any artificial sweetener or sugar alcohol if I can avoid it. And as for that linoleic acid riddled chemical concoction promoted as an alternative to butter - no margarine for me.

Medical advice to limit consumption of nuts flies in the face of good evidence that increasing nut consumption is associated with better health outcomes. And don't get me started on the GST on roasted nuts. They are a staple for many vegetarians, especially vegans. (not that I fall into either of these categories.) Roasted nuts are an essential ingredient in many classic Asian main meal recipes, yet meat eating dinosaur public servants have discouraged their consumption by imposing an extra tax on them.

What should diabetics eat? Don't just listen to me. Look at what other long-standing diabetics who are healthy, active and free of vascular, renal, nerve, eye and other disease are eating. Then modify that according to your own personal circumstances.

I can't recall ever meeting any really successful older diabetic who thought current dietary guidelines were the best advice.

Life is too short to eat tasteless food, and as every chef will tell you, fat is taste. Bon appetit.

Get active 1

Diabetics need to be physically active, and that isn't going to happen unless what you are doing is fun. There are few readily accessible activities more fun than bouldering.

Even if you finish work at 7pm and it is dark, cold and raining, the bouldering gym will still offer you challenges of every degree of difficulty. 

Don't worry about the landings.  I have had a lumbar laminectomy and have two screws in my ankle, but the mats are cushy enough even for my ageing body.

The two screws holding my shoulder together are not a problem either.

School success

Congratulations to Stephen who has just completed his Higher School Certificate exams. How did he manage to do so well?

Perhaps it is more instructive to look at what he didn't do.
He didn't look at two different study / learning / teaching methods which had been allocated to groups of average students and then look at whether the average level of success in one was greater than the average level in the other.

Yet that is exactly the nonsensical approach used by doctors to determine "best practice" in diabetes management. It is a recipe for mediocrity. If you want results that are truly average, then use average treatment.

If you want really good results then do what really successful people do. That is what Stephen did. That is what works.

Dads anD Daughters Do Descents

Dads anD Daughters Do Descents

Last decent weekend of the BC season. Perfect spring skiing day on Saturday skiing lines into the Club Lake cirque.
Here is Greg's Strava track and a few pics

The weather was not so good on Sunday, so we did a shorter ski up Carruthers. Yet another example of how great life can be for t1s if you do the opposite of what doctors tell you to.

What’s good about having diabetes

Getting Type 1 diabetes is seen by many people as a complete disaster. Effective treatment has been around for less than a hundred years and before that life expectancy after diagnosis was very short, with most patients dying before they had reproduced.

Although there are environmental triggers, the existence of diabetes is largely determined by a number of genes. How is it that these genes persist in a population over generations if many of the carriers of those genes do not reproduce?

We can infer an answer to this question by looking at single gene diseases in which the situation is clearer. For example thalassaemia, sickle cell disease, G6PD and other red cell disorders gave heterozygotes some resistance to the effects of malaria, the cystic fibrosis gene protected against cholera and the gene for haemochromatosis was useful in dealing with anaemia due to hookworm and other causes.

So these serious diseases persist because their effects were not all bad.

(Aside: I am aware of research showing how a gene with effects that are all deleterious at a young age can persist in a population, but I think this mechanism does not apply to diabetes. Genetic diseases that kill the elderly do not impede the survival of the gene. In fact they may enhance it)

Why do Type 1 diabetic genes persist in the population. The answer has to be that some of these genes confer a survival advantage. What advantage? I don’t know but there must be one. It may be that diabetic genes improve performance to a small degree in a broad range of activities and a specific advantage will never be determined. ( the evidence in favour of this will be in a later post) 

I used to think about what life would be like if I didn’t have diabetes. I wouldn’t have the hassle, but on the other hand I wouldn’t have the advantages. Maybe my skiing abilities would be much worse.

So don’t hate your diabetes. Learn to deal with the downsides, so that the good effects can shine through.

Peripheral Neuropathy

Peripheral Neuropathy

Tests of peripheral nerve function used by some doctors can fail to detect what to patients are significant degrees of dysfunction.
I know this personally from being a patient with a massive lumbar disc herniation, pronounced to have normally functioning nerves by some doctors. Surgery removal of the offending bit of disc was spectacularly successful.
If you can do the following then you can be assured that your peripheral nervous system is functioning pretty well.

If you can't do this maybe you should think about whether you have a nerve problem and need to alter your management. Perhaps you should be more sceptical of advice you have previously received. It is well documented that many asymptomatic T1s, who are normal according to doctors physical examination, actually have low peripheral nerve conduction velocities and amplitudes. A doctor's opinion without nerve conduction studies is really not that reassuring.
Also note that riding a unicycle with a training wheel (aka bicycle) requires much much less nerve function.

Race nutrition

A few weeks ago I competed in the Kangaroo, Australia's premier long distance cross country ski race, and one of the world loppet series.
There were around a thousand entrants in the race over all classes.
I managed to be the 12th Australian home among those over 55, my best placing yet in my age cohort.
What did I have for breakfast before the race? A bowl of cornflakes and 2 cups of coffee. That is all. At the race itself I had a pre-race gel and some of the energy drink supplied by the race organisers. I would have been slower if I had started the race with a stomach full of rolled oats.

For those diabetics interested in maintaining their physical abilities as they age, I recommend Diabetics Athlete's Handbook by Sheri Colberg, although it has no specific information for those like me who also have Addison's disease. It has several sections on various matters relevant to older active diabetics, but doesn't go into the minutiae of what treatment strategies are associated with long term success in maintaining physical capabilities. Disappointingly, dosage recommendations are all in the form of a relative change in dose. There is no data on what absolute value of dosages are associated with long term success. Nonetheless I consider it essential reading.

Common sense says that if you want to be a healthy and active Type 1 diabetic when you are retired, you need to look at such people and follow a management plan which matches their's in diet, insulin dosage, and physical activity parameters. No randomised trial is going to measure such a long term outcome any time soon. Unfortunately, few medical researchers show any sign of appreciating the benefits of a case control approach.