When you allow science to be run by lawyers, you get the results you deserve.

Who knows what went on in this research?
What did the original data show?
How can anyone have confidence in any Australian research if the issues are not open to debate. The public are just "told" by lawyers what to believe.

Banned! - They must be worth looking at.

My views that is.

Why do I blog? There are all the usual reasons. Plus I have a special one. For a long time now I have not been allowed to present at any CME/CPD meeting within ACT Health. Ever since I discovered a mathematical error in a paper which was authored by the friend of a professor.

Doctors seem to think they are smart when they say "no comment" All they are doing is guaranteeing that the problem will move to a different forum. It's not like I haven't discovered any issues worth discussing.

When I offered to present one of these issues at a meeting, I was told "No one is interested"

10,000 views of my combined social media contributions in the last 6 months says ACT Health was wrong.

Optimising steroid dose and type

Here are my mountain running results over a 4 year period.

Hydrocortisone was my only glucocorticoid at the start of this period. My results were occasionally quite good ( I obviously wasn't unfit then), but despite trying all different doses and timings I could not get consistent results. Many have attributed this to the rapid swings in plasma levels from standard treatment. If I got it right, I was ok, but mostly I didn't .

Not only was my performance variable, it was declining over time. Note the paucity of results from 2013.

Substituting some of my HC for prednisolone appears not only to have reversed the decline, but also led to gradual improvement. Starting Pred did NOT cause a sudden improvement, nor did I expect it to. Muscles weak and flabby from a sub-optimal steroid regimen do not recover instantly. It takes many months.

Training is what makes people faster. All good steroid replacment does is allow me  to train with greater frequency and intensity. If I had just sat back and waited for pred to work, it wouldn't have. What do I mean by training? I don't have a coach or a rigid scheme. I ski, skate, climb, run, juggle and so on. I just get out there and have fun. The right steroids allow me to have more intense fun more often.

Veterans Athletics tables show that the average 55 year old Masters competitor gets about 15 seconds slower per year in races that take about 20 minutes. In the absence of any special intervention, I expect that my times would have declined by 5% over the 4 years due to ageing. Instead they are still improving.

I can also use these tables to look at whether I am taking too much steroid. Excess glucocorticoid causes myopathy. Glucocorticoids are not banned from sport because they are performance enhancing per se. They can produce a very short term effect by masking the pain of inflammation and allowing athletes with injuries to compete. This is going to have a deleterious effect in the long term.

Finally, to reiterate a previous point. In optimising my steroid dose, I am meticulous in doing all the physical activity,  lower AND upper body, to mitigate the risk of osteoporosis. I have also learned of the association between cycling and spinal osteoporosis, and factored that into my lifestyle.

Added note : It is not my speed that is important here. It matters not whether I run 5k in 21 or 51 minutes, the important thing is the trend. Ask your local statistician about the power of trend tests. If my times are worsening faster than age-related decline says they should, I want to know why. Improving times suggest I am doing the right thing. Even just maintaining your times as you age is an achievement.
To paraphrase Drucker, if you don't measure it, you can't manage it. Merely feeling that you are doing OK is not a sufficient condition to meet the WHO definition of Health.

Credits : A big thank you to John Harding,  the driving force behind mountain running in Canberra.

Recent Addison's disease research from Europe

Recent #Addisons disease #research from Europe finds that a glucocorticoid regimen commonly used by Australian endocrinologists is INFERIOR to an alternative treatment in many respects, particularly for those with diabetes. It also confirms poor quality of life in many patients using conventional therapy.

You can readily find this information online, and that way you will be sure that I am not selectively quoting references. If looking online at recent research is too hard, at least ask your doctor whether you are on treatment similar to the one that was found to be inferior.

Advice from the Canadian Addison Society on glucocorticoid combinations

In response to a question on a mixed glucocorticoid regimen :

"If you have been taking the combination of prednisone and cortisol...and have found it satisfactory, there is no reason to change."

Presumably they think the same about prednisolone and hydrocortisone.

Don't believe something just because the person who told you was a medical specialist.

The #evidencebasedmedicine movement has been around for decades, but the old guard of medicine still cling to the alternative - Eminence Based Medicine. You have to believe something just because a "medical expert" got up and said "the evidence shows...", when it does no such thing. If you want the best answer, look at the evidence yourself. Sackett said look at the best evidence. Don't reject something because it doesn't fit a particular professor's definition of "good" evidence. Did the research study people like you in most respects? Did it measure outcomes that are important to you? eg quality of life, absence of fatigue, ability to play sport at your desired level? Did it measure marginal or conditional probabilities?

My definition of good evidence is quite different from most doctors. Perhaps that is why I am successful. Heckman's Nobel Prize winning work on this subject will be the subject of a future post.
Unfortunately, many doctors only quote Heckman when his methods support their theories. Doctors are terrible at looking for evidence that might contradict their current beliefs.

I am not an endocrinologist, but I do have far more formal education in the mathematical analysis of scientific research than any endocrinologist I know.

Of course you should not believe me just because I do maths. I would be a complete hypocrite if I suggested that. If you want the best answer, learn enough about diabetes, addison's and maths that you can work it out yourself. If you want a simple answer of average quality, do something different.

NATIONAL TOP TEN PLACING !

Orienteering Australia has now announced rankings  for 2015 for competitors who race in age classes other than the opens or junior elite (17-20)

I placed 10th in M55s !

A substantial improvement on my previous performance. Read the forums - many Addisonians have trouble just getting out of bed. Score another point for my method of disease management.

As far as I can tell, only one Addison's patient in the world has done as well in their age category in a national event, and he didn't have diabetes.
If you, or someone you know has done better, drop me a line via google plus and I will be sure to include the details here.


(Addison's is more of a lifestyle impediment than type 1 diabetes - subject of a future post)

Why do endocrinologists prescribe treatment that NEVER works (part 2)

I read a story this morning about a 90 kg triathlete whose endocrinologist advised him never to take more than 25 mg of hydrocortisone on an event day and recorded evidence that he had given this advice to the patient for medicolegal purposes.

Lets assess whether 25 mg HC is a good maximum dose for athletic endeavours of this sort by two different methods.

Firstly medical : The vast majority of Australian endocrinologists have never seen a patient with Addison's disease who does triathlons or similar competitively. They might consult Pubmed or similar, but will find very little. Their advice is mostly derived from extrapolation.

Secondly, internet evidence : There are a lot of Addisonians out there. More than 8000 in the UK alone, mostly adults and most with internet access. While not all of them wish to run marathons / ski race / bike race etc, many will. There would be something seriously wrong if very few of them wanted to.

If 25 mg HC was a good dose, at least some people taking that dose would have posted their success online. I can't find ANY. I do, however, find many Addisonians racing successfully on much higher doses.  Like 15-20 mg Prednisone (approx eq 60-80 mg HC)

You can also look online to see what Addison's athletes take on rest days. It is not what your endocrinologist may have led you to believe.

So many people are now online, that internet evidence gives a much better picture of what is happening in some areas than medical research.

Take home message for the day : Look at what is NOT on the internet. If you can't find any first hand accounts of success with the treatment you are using, start asking questions.

Why do doctors prescribe a treatment that NEVER works well?

I have spent hundreds of hours scouring the internet. I have requested information from many different diabetes discussion forums in many countries around the world.

There is a lot of data there. There are tens of thousands of diabetics on diet forums, many posting about what they eat and what they do.

Yet I have been unable to find even a single person who meets the following criteria
1. Age and disease duration equal to or greater than me.
2. Complication free
3. Physical capabilities sufficient to enjoy a range of outdoor sports
4. Eats a low fat diet, uses low fat cheese etc on days when they are sedentary.

I am unable to find any evidence that low fat diets work really well in the long term for people with Type 1.
I do, however, find many very successful diabetics whose dietary fat to carb ratio far exceeds that recommended by Australian Government health authorities.

Doctors are no help. They consistently refuse to collect any formal data on the long term effects of various diets which might cast doubt on their pet theories. That leaves the internet as the current best source of information, even if it is far from perfect. Ignore it as your peril.




Additional notes

1. What athletes eat on training or competition days is irrelevant. 300 grams of carbs a day with little fat does NOT stop you achieving goals of normal blood sugar and low insulin levels if it is consumed during a long day in the mountains, on foot, skis or bike. This practice shouldn't be used as evidence to support a low fat / high carb diet generally.

2. Many people with diabetes claim to have an "individual" diet that works for them. How do they know it will work in the long term? Most of us will die from cardiovascular disease or cancer, not an abnormal HbA1c. How do they know that their current levels of consumption of sugar, fat and insulin are not increasing their individual cancer risk, or the amount of atheroma in their own cerebral arteries? Evidence of long term effect can only come from population studies.

Identifying Dodgy Research - part 1

Lets attack this problem in pieces. Firstly, are there particular specialties that are more likely to be involved? Yes. I am not the first to notice that anaesthesia is grossly over-represented in the list of culprits.

The Scientific American in 2009 referred to anesthesiologist Scott Reuben as "A Medical Madoff", who faked data in 21 studies.
As noted by Retraction Watch, this number of withdrawn studies was eclipsed by Joachm Boldt. The current record holder is Yoshitaka Fujii, who is reported by Retraction Watch to have fabricated his results in at least 172 published studies.

Anesthesiologists "have an absolutely horrifying track record in terms of retractions," according to a researcher who studies ethics quoted by Retraction Watch. You would think that the profession would get its house in order after the first scandal, but no, that didn't happen.
Also of note is the extreme persistence of the complainants in these cases, in the face of a serious reluctance by anaesthetists to criticise their colleagues. It is likely that many complainants have not been so doggedly persistent and have let dodgy research remain on the books for the sake of their careers.
Anaesthetists comprise only a small percentage of medical specialists, yet the retractions from just these three are far more than proportional.

Is the problem now under control? I think drugs in sport would be an appropriate metaphor here. The bureaucrats say they have testing and policies against it, yet the truth is quite different.

Noted anaesthesia academic Dan Sessler, with whom I have discussed research, is more concerned with widespread minor misconduct, rather than outright fraud. Some of his particular concerns include unreported data selection, and outcomes and hypotheses which are not specified in advance.
He believes that the likelihood that these are more common than fabrication means they probably contribute more to scientific error.

There is indisputable evidence that the problems noted by Sessler are still occurring here, and that Australian research regulators are doing little to stamp out the practice. The RACP has declined to comment on the evidence. (Yes, RACP. It is not just an anaesthesia problem.)

Next time you read a scientific paper, check whether there is a statement that all data has been reported on, or an explanation given for why it was not.

Why running on fat does't work for moderate distance events - technical details

Everyone knows that burning a gram of fat produces more energy than burning a gram of glucose - roughly twice the amount. However, that fact is of little relevance to most athletes, as the supply of fuel is not the rate limiting parameter when it comes to performance. (ultra long races excepted)

The rate limiting step is the supply of oxygen to the working muscle. As much as Tim Noakes would like to, you can't magically increase the amount of oxygen that your heart pumps to your muscles during a race where you are running at close to VO2 max.

Rather than looking at the energy supplied by one gram of fat, we need to look at the amount of energy produced per unit of oxygen when burning fat vs that produced when burning glucose.
Check the biochem textbooks:

Glucose   467.1 kJ/mol O2

Fat           436.5 kJ/mol O2

Glucose is the clear winner. If you are running fast, and want your muscles to generate the maximum amount of energy in a given time, you want to be burning glucose, not fat.

Low carb guru Prof Tim Noakes - read this review before you buy his book

Tim is a hero of the low carb movement, and you may be thinking of buying his recent diet book "The Real Meal Revolution"
Before you do take this quick quiz.

Here are Tim's online running results

Mine? Today I did a 10.6km trail run -the Tour de Ridges - in 51 minutes flat. Last year  49:21 Using a Master Athletics age grade calculator, this equates to 50:20 for a 63 year old doing a 10 km trail run.

Unlike myself, Tim does not have diabetes, does not have Addison's, doesn't have 2 screws in his ankle, hasn't had a laminectomy (afaik), takes his running very seriously, and eats low carb on race day. The question is this. Which of those 6 factors do you think might account for the fact that Tim runs way slower than me?

While Low Glycaemic Load/Low GI/Low Carb works well in many situations, race day at moderate distances is not one of them.
People say fat burns long and slow. They are certainly right about the slow bit.

note : I am by no means fast. The fastest locals in my age group are waaay ahead of me.

Technical details about the benefits of glucose as a fuel are in the next post.

Best way to carry emergency glucose

Here is the best way I have found to carry an emergency glucose supply.

Buy glucose in flat rectangular blocks. I find it in the sport supplement section of the supermarket, not the pharmaceutical aisle.

Wrap in a small amount of plastic wrap. I wrap one single, and two end to end.

Three 3g blocks fit longitudinally in a credit card slot of a standard leather tri-fold wallet.

You can see a faint bulge at the right hand edge. As the glucose does not overlie the bulk of the cards it only increases the thickness of the wallet by about 1mm. Having 3 teenagers means my wallet is never too fat from banknotes.

If 9g is not enough of an emergency supply for an average day, you really ought to re-think your diabetes management.



Addit. For watersports, use waterproof adhesive tape to form a loop at the base of a gel packet. Tie it to the waist string of your swimmers or anywhere else convenient. This way you can even carb up under water.

For skiing, mountaineering etc wear the gel as a necklace. You can take on carbs using only one hand and without taking off your gloves/mittens by biting off the gel top. Please also tape the gel top to the body so that the gel top doesn't become litter on the ski track.

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"