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.

Unexplained deaths in young diabetics and other poor treatment outcomes

Here is the text of a letter to the editor I had published recently in the online section of several newspapers:

Diabetes deaths

Yet another death of a young diabetic reported in The Canberra Times ("Woman may have lived if response had been quicker", August15, p3). A Canberra hospital staff member has told me there are many poor outcomes among a group of their patients with type 1 or juvenile onset diabetes. When is the Health Minister going to respond to the systemic issues relating to diabetes care, which have been notified to him?
Dr Nick Melhuish, Hughes

Read more: http://www.theage.com.au/it-pro/experiences-of-bullying-are-not-invalidated-by-turcs-issues-20150818-gj24wg.html#ixzz3mhXcLOXs

 I am also aware of a third young Canberra diabetic who also died in similar circumstances, soon after moving away.

The ACT Health Minister still refuses to comment of the issue of poor Type 1 diabetic outcomes. And while the complication rates of surgeons are subject to intense scrutiny, and made public if they are a few standard deviations from the norm, the outcomes of treatment provided by physicians are swept under the carpet. Despite the number of poor outcomes reported to me, I believe there has never even been any audit in Australia of outcomes in people with diabetes and Addison's disease.

I have read much of the original literature on the subject of "unexplained" deaths in young diabetics, and it certainly does not support the view that these deaths are unrelated to treatment methods or lifestyle variables.

My glucometer reading was 2.3 mmol/L (41mg/dl) so I decided to play chess

My glucometer reading, correctly done, was 2.3 mmol/l so I decided to play chess. I do not recommend that you try this yourself.

A Government health website states the following
"When BGL's fall below 2.8mmol/L, brain function slows down, causing reduced concentration and response time, confusion, poor coordination, blurred vision, and can lead to unconsciousness."

That certainly used to be something like what happened to me. (apart from the blurred vision and unconsciousness parts)
However, since I started ignoring medical advice and doing my own thing I am much better off.

Last weekend, my heart was a bit faster and pounding a bit stronger than normal. Usually I would just eat straight away, but I decided to check my blood and got a reading of 2.3 (or 41mg/dl).
Instead of eating, I decided to play a game of lightning chess against Fritz with a handicap setting of 1.
Rules: touch piece, if the game takes longer than 5 minutes, or I fail to notice a check, I lose. No taking back moves.
Here is the game

Total game time was 2 minutes and 37 seconds. A pretty scrappy game, but I am no grandmaster and that is about as well as I play when my blood sugar is normal and I am making each move in a bit over 2.5 seconds average.
I checked my glucometer reading again after the game with my usual impeccable technique, and it read 2.3 again, so I ate some food, but much less than that same Govt website says one should.

Conclusion: No evidence of cerebral impairment at a glucometer reading of 2.3. How low does my blood sugar have to fall before my ability to play lightning chess is noticeably impaired? Stay tuned.

If you have diabetes, you really should learn the science behind avoiding brain fatigue when your sugar is low.

Addison's disease

I was never much of a runner at school. I never represented the school in cross country and there was only one year where I just scraped in to the track team for one event.
Yet after 18 years of T1 diabetes I now run much faster than most of the people who outshone me at school.
In yesterday's Parkrun I posted the 4th best time for M55s since Ginninderra parkrun began.

http://www.parkrun.com.au/ginninderra/

I am still quite a few minutes behind the best ever time, but that gives me something to aim for.
A few reasons for my success.

1.I have been playing around with different steroid doses for sporty days.
My current favourite for races around an hour or two, which I used yesterday because Parkrun was not my only outing, is
Prednisolone 5mg
Hydrocortisone 15mg
Fludrocortisone 100 mcg
I had these at 4:30 am to make sure they were working before the start of the run, then no other steroids for the rest of the day. Of course doses like these are completely inadequate for a big ski day.

2. My diabetes management is completely contrary in most respects to what doctors recommend. Standards of medical research in this part of the world are appallingly low, both in general and with respect to diabetes. Look for yourselves at the original research that underpins your treatment and you will be horrified. Has anyone ever seen an article on T1DM in an Australian medical journal that has been even remotely helpful in their management? Many of the strategies that I use are described by Australian doctors as ineffective or deleterious. Yet I manage to do OK. Go figure.

3. I had the best ever earworm for the run. Mahalis's Just Like a Star. I was into the final kilometre before I had a chance to even think about how the run was going.

Skiing 6.9.15

After 10 years of skating track skating, I finally persuaded one of my kids to try backcountry skiing. A worthwhile trip up Twynam via Tate east ridge, despite the icy conditions for the first 200 vertical metres of the descent from Twynam. Strong cold winds meant we didn't stop for lunch until we got to Illawong.
Levimir 6U and Nrapid 4U in Jindabyne was good for the trip. Cold conditions and high winds meant testing BSLs was quite impractical for the middle few hours of the trip.

Intro

Everyone knows that young people with diabetes can do amazing things, even win an Olympic medal. But what happens to Type 1 diabetics after they reach legal retirement age and have had diabetes for many years? How do they manage? Here is my story.

Skiing 11/9/15

Backcountry ski trip to Leatherbarrel Creek from Dead Horse Gap.

Beautiful spring skiing. All up 1500 vertical metres of ascent and descent on mainly soft snow.
Levimir 8U and Novorapid 3U wtih breakfast and Novorapid 3U with lunch. I stuffed my face with carbs all day, but still had to eat more when I got back to the car at DHG to keep my readings up.
Mt Kosciuszko is near the horizon centre in the last pic.

Rod's Strava track from the day: