December 31, 2008

Appreciating How Far We've Come

It's easy to get frustrated about the current state of diabetes treatment. As my daily email inbox will show, doctors still fail to diagnose diabetes until it has been given years to damage patients' bodies and when they do diagnose it, they all too often treat it with dangerous drugs and toxic low fat dietary advice.

But as infuriated as we may feel that so many people are suffering tragically unnecessary complications because their doctors don't have the time or inclination to learn more about diabetes than the "education" they receive from perky ex-cheerleader drug reps, there are some grounds for optimism.

The greatest of these is the increasingly powerful role of online patient-provided diabetes education.

It's been a decade since my own diabetes diagnosis. When I first checked into an online diabetes support group in 1998 people who would suggest using a low carb diet to lower blood sugars would be greeted with accusations that they were trying to murder diabetics because everyone knew that the low carb diet destroyed kidneys and gave people heart attacks. (You can read the research that found these beliefs to be wrong HERE.)

The diagnostic criteria for diagnosing Diabetes based on fasting glucose had just been changed in 1997 to 126 mg/dl, but the news of this change was slow to get out and many family doctors were still diagnosing diabetes only when fasting blood sugar rose over 140 mg/dl. This meant that most people who were newly diagnosed already had significant neuropathy.

Many people with Type 2 diabetes were taking Rezulin. A few months later we learned that Rezulin had caused many completely unnecessary deaths due to liver failure, mostly because doctors ignored the warning not to prescribe it to people with elevated liver enzymes --which are very common among people with Type 2. Only after many people died was it was finally taken off the market.

There were also discussions going on in 1998 about whether Metformin, approved three years earlier, was safe. Some people posting online interpreted the transient early side effects of metformin as signs they were developing lactic acidosis and stopped taking it, though subsequent studies have shown this side effect to be extremely rare and to occur at the same incidence in people taking Metformin as it does in those who do not take it.

A friend diagnosed a year before I was was taking part in a pre-approval study of a new "miracle" diabetes drug. That drug was Avandia which was only approved by the FDA the next year.

Back then, people whose A1cs were near 7% were convinced they were in excellent control even when they were experiencing blood sugars above 200 mg/dl at every meal--though few people back then knew what their blood sugars were after eating, because doctors rarely told people with Type 2 to test their blood sugar at all, and if they did tell them to test, they told them to test once or twice a week first thing in the morning, fasting.

There was no understanding within the medical community a decade ago that blood sugar spikes were to blame for the damage caused by diabetes. My own doctor said my blood sugars in the mid 200s were "nothing to worry about" because my A1c was in the 6% range and would not prescribe test strips to me because my fasting blood sugar was normal (i.e. under 110 mg/dl) thanks largely to my low carbohydrate diet.

I had to pay for my own test strips myself, at $.60 a piece which was a lot more money than it is now thanks to inflation. There were no cheap brands available. These test strips were even less consistent in their readings than the ones we have now and tended to go bad by the end of the container.

There was little to no understanding even among specialists of the "Type 1.5" forms of diabetes. The expensive endocrinologist I saw offered me no treatment or explanation for why I had diabetes despite maintaining a normal weight or why I had had abnormal GTTs and Gestational Diabetes in my 20s and 30s when I weighed under 120 lbs. All he did was suggest I switch from my Bernstein diet to a "Meditteranean" diet. I did that for several weeks, gained ten pounds, got back on the blood sugar rollercoaster and spent the next year badly out of control.

Other adults I met online reported that they had been treated as "Type 2s" even though their blood sugars went higher and higher until they ended up in the hospital with DKA and were told they were Type 1s.

When I visit an online diabetes support community today, the picture is very different. Though most doctors aren't giving people much better dietary advice than they were getting a decade ago, they are diagnosing people earlier and they are taking pre-diabetes much more seriously. This is important, because the evidence is very strong that the most significant "diabetic" complications, neuropathy, retinopathy, and heart disease begin at blood sugar levels that are defined as "pre-diabetic."

Every online community now has its "greeters" who orient new visitors and explain to them the importance of testing their blood sugar and keeping their post-meal blood sugars as low as possible.

Though the ADA continues to promote the ineffectual, low fat diet that raises blood sugar and provides a steady stream of customers for the junk food companies and drug companies that are its largest sponsors, the diabetes patient community as a whole has accepted that the low carb diet is safe and effective.

It is impossible now to spend more than a few minutes reading any online diabetes discussion board without reading of the benefits of cutting back on carbohydrates. My inbox is filled with letters from people with Type 2 who have done just that and achieved the 5%-range A1cs that almost always result from cutting back on carbohydrates. The online community is also helping people become more aware of the impact of the drugs they take and alerting people who are misdiagnosed with Type 2 about the possiblity that they might have one of the Type 1.5 forms of diabetes.

The situation for Type 1s is even more dramatically improved. Pumps and CGMSs are helping people with Type 1 achieve blood sugars in the truly normal range. Newer, faster meal-time insulins like Apidra also help make this possible. I am heartened by how many young Type 1s report that they have A1cs in the mid 5% to low 6% range. Ten years ago, this simply did not happen and long term it means that these people are likely to be much more healthy and complication free.

It stinks that much of this improvement has been going on despite rather than because of the current standard of medical care. But I have hopes that the new administration in Washington will make changes to the FDA that might rein in the drug companies, limit drug advertising, and even, one allows oneself to dream, encourage doctors to recieve their continuing medical education from sources other than drug company representatives.

But even if that doesn't happen, the power the internet has given people with diabetes to reach out to others and give them the education they need to remain healthy is such that it is transforming diabetes management no matter how far doctors lag behind.

And not all doctors are lagging. Some who see patients making dramatic changes in their health with non-drug solutions are recommending low carb diets to their patients. Some doctors who themselves have developed diabetes in middle age are discovering the limits of the treatments they have been prescribing. Eventually we will reach critical mass and even the ADA will not be able to keep everyone from understanding the impact of dietary carbohydrate on our blood sugars or the importance of achieving normal blood sugar levels.

Looking forward, the most interesting development I see is this: Over the past year or two, the drop in price of the arrays used to do genetic testing is making it possible for researchers, finally, to investigate the genetic underpinnings of diabetes by testing large populations and statistically analyzing hundreds of thousands of SNPs (single nucleotide polymorphisms) looking for the subtle genetic flaws that until now were impossible to detect.

What they are discovering is laying to rest the idea that Type 2 diabetes is caused by gluttony and sloth. Almost every week a new genetic flaw is discovered to be prevalent in people with Type 2, many of them, to the surprise of investigators, flaws that limit insulin secretion, though a few common SNPs found in people with Type 2, are alsoo being linked with increases insulin resistance or, more interestingly, defects in the way that the liver releases glucose.

Though doctors are not aware of this research and many still blame patients for their diabetes, the genetic advances we are starting to see are beginning to change this. Only this year the media have started to describe Type 2 as being genetic in origin rather than, as was the case in the past, describing it as being caused by an indulgent lifestyle.

Over time, these genetic discoveries will lead to improvements both in early diagnosis and to the development of carefully targeted and more effective treatments. We will start to understand the impact of specific genes and see that Type 2 diabetes is not one uniform disease but a constellation of genetic flaws which impact different parts of glucose metabolism and hence require slightly different treatments.

It is even possible that with the political changes we are seeing, society will finally be informed that the main reason for the so-called "obesity epidemic" and spread of diabetes is factors that are causing genetic damage: Exposure of infants to environment toxins like BPA, pesticides, PCBS etc, and to the overuse of food science disasters like immunotoxic soy in our food supply. There is already a lot of research that backs this up. It has only been because our EPA was hijacked and set to serve the interests of huge industrial polluters that this information has not been acted on.

We still have a long, hard battle. Industry profits when they pollute or use cheap chemicals in food instead of expensive natural ingredients. They profit again when we get sick and require expensive drugs.

Doctors have no incentive to make us so healthy we don't need to pay them for $30,000 operations, so you will always see more press about how diabetes can be cured by expensive surgeries or controlled with $200/month drugs than you will about how cutting back on junk carbs could do the same thing.

But we people with diabetes are uniquely fortunate among those who have chronic diseases that we can reach out to each other and improve our own condition simply by sharing common sense proven techniques with each other.

So with that in mind I wish you all a Happy New Year, one filled with health, hope, and prosperity. If you are out of control thanks to the holidays, check back on Friday and we'll start our New Years Diabetes Detox together.

11 comments:

Ryan Lanham said...

Single best diabetes post I have ever read.

It would be such a huge service to the world if a list of doctors who "get it" was maintained by thinking patients such as yourself.

Ryan

Colleen said...

Wow Jenny! What a fantastic "wrap up."

Gracie said...

Jenny,
Totally awesome. One thing, you mention that type 2's often have elevated liver enzymes. Since I do as well I'm wondering where I can research this to show dear doctor that I'm not a nut case ( ok I may well be, but not in this instance) *grin*
Thanks for all you do for all of us out here!
Hugs,
Gracie

Jenny said...

Gracie,

My understanding is that fatty liver is a cause of the elevated enzymes. Metformin has been shown to reverse fatty liver over time. I believe that significant weight loss like what you have reported and a lowered triglyceride load thanks to cutting carbs can also have an impact on this, but it does take time.

Drinking, hepatitis, and some drugs (Actos, Avandia, Statins) can also raise liver enzymes and if yours are elevated you should check all the meds you take to make sure they are safe for people with liver issues.

Doctors, alas, are not well-educated about even the most well-understood side effects or warnings relative to the common drugs they prescribe.

Here's an interesting article about Liver Enzymes from Medscape:

http://www.medscape.com/viewarticle/459548

Rich said...

For many years (back when I had out-of-control blood sugar levels), I also had elevated liver enzymes (non-alcoholic steatohepatitis). My doctors did not seem to connect high blood sugar with NASH - I figured that out. They suggested a liver biopsy, which I declined.

Instead, I normalized my BG numbers (via LC diet, insulin, metformin, and visits to Dr. Bernstein), plus good-quality fish oil supplementation.

My liver enzymes have been completely normal for years now.

It can be done.

Ian Mackereth said...

Like many of your readers, Jenny, I came across your articles (in my case, I think it was "Do People with Type 2 Always Deteriorate?" and it changed my life.

I probably would've listened to my doctor and local diabetes association educator and been satisfied with measures that basically meant dying and suffering only a little slower than if I hadn't been diagnosed.

Instead, I took control, lost 25kg, and have HbA1Cs in the mid-5% range. Scratches heal up quickly again, I can climb hills that would once have required four "gasp-stops" and anyone who hasn't seen me for awhile comments on how well I look.

And, after almost two years and some unrelated major life changes, I know that it's a lifestyle that I can maintain indefinitely, and probably for a decade longer than I would've had the chance to if I'd remained one of the large number of undiagnosed diabetics!

Thanks for saving my life, Jenny.

Anonymous said...

You are so right, Jenny.
The diabetic educators I dealt with actually were perturbed that I didn't want the 2 cookies a day I was allowed. I said, no way, it would set up a sugar craving in me.

They really hate the Atkins diet. All they know is Low Fat. "Low Fat" products usually have more sugar.

I get into fights with my doc over things, because I work in medicine, and I know he isn't right when he tells me not to check my blood sugar, and that "it takes decades to get to where you could even lose your eyesight."

-Twixcookie


You are so right about liver enzymes. LFT's can be off by many drugs as you mentioned.

Your blog posts are so good. I feel like I am not alone out here and there is some sanity in all of this!! Thanks!!

Rainer said...

Jenny,

Congratulations to this success in US. Unfortunately in Germany it isn’t so. Their is no health professional who proclaims in public healthy targets or lowering carbs.

In support groups there is one man, who fights more and more successful for targets 140-120-100 mg/dl in 1-2-3h. But if he advertise reducing carb-input the other group members shrill promptly that this is very unhealthy. In a thread on "dm-treff" shortly 8 of 10 people was trying to prove that carbs absolutely are needed for energy -isn’t it sad? But time is on our side and so I’m sure that also in Germany people with diabetes in a little wile in the internet may discuss the powerful possibility of cutting carbs and the healthy targets 140-120-100. I’ll do my best to support this.

Rainer

Jenny said...

Rainer,

I suspect that cultural differences play a part here. In the U.S. we tend to be suspicious of all authorities so people are more likely to challenge what doctors tell them.

That said, there are still many people who are the way you describe here, too.

About all you can do is report on your progress as time goes on. Some people won't care, but some people will be impressed by your success and will want to know how you achieve it.

Anonymous said...

gluten intolerance can cause elvated liver enzymes. If this is a factor, you'll want all traces out of your diet (supplements, etc.) because it may be wreaking more havoc than just your liver.

Nicky said...

What Ian said!

THANKS, Jenny - I owe you a huge debt.

Nicky.