Type 1 diabetes: when doctors’ good advice turns bad

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By Marika Sboros

Here’s a fascinating blog that throws up an ethical dilemma for doctors, nurses and dietitians who dish out orthodox advice for type 1 diabetes.

The writer is Lemming Test-Pilot, the alter ego of a British GP who has type 1 diabetes. Last year, Lemming ditched “the almost impossible dark art of carbohydrate counting”, went on a low-carb, high-fat, ketogenic diet and survived. Actually, Lemming  hasn’t just survived but has thrived in body and mind. And has been running half marathons faster ever since, even after fasting.

Doctors and nurses told Lemming to go on the wrong diet for type 1 diabetes for 20 years. Lemming is understandably miffed about that but says with admirable restraint: “Any other condition managed with the wrong treatment for 20 years would rightly merit a lawsuit. The guideline advisers are getting knighthoods.” Here is Lemming’s remarkable, poignant, real-life story:

By Lemming Test-Pilot*

I have had type 1 diabetes for 20 years. I got it relatively late, in my 30’s. I’ve managed it the conventional way: 55% carbs, 30% fat mostly unsaturated, basal (long-acting) insulin, and DAFNE (Dose Adjustment For Normal Eating) with carbohydrate counting and injection of rapid acting insulin to balance the glucose.

I look after my weight and exercise regularly. I tried three types of statins at various doses but had to stop due to muscle pains and fatigue.

doctor
Cartoon: DES Daughter via Foter.com / CC BY-NC-SA

My blood pressure is OK and cholesterol reasonable in the 5’s. I have tried hard to manage my condition to the best of my ability and have followed the NICE guidelines and regularly attend for check-ups. My GP or Diabetes Nurse takes my measurements every year, makes some suggestions for improvement (there is always room for improvement) then leaves me to it for another year.

My GP team therefore manages me 0.2% of the year. I manage myself 99.8%.  Unless they have diabetes or are close to someone who has, clinicians would find it difficult to imagine what we diabetics go through on a daily basis.

For example, forgetting if we have taken our insulin doses. Running out of supplies. Eating out and forgetting insulin, or worse, injecting early and the food arrives late. Feeling hypo and having no glucose. Being drunk and not knowing if it is hypo or hangover. Re-using needles or injecting through clothes to be discrete. Constantly struggling to master the almost impossible dark art of carbohydrate counting.

Mini-hypos are not uncommon, but dangerous ones are rare. I have had hypos regularly for 20 years but I’ve only been caught out twice when I needed help. Both were due to my stupidity.

My medical team are really good and seem to understand me well. They have been looking after me for 20 years and I think the continuity of care has helped a lot.

But despite some of the best medical care in the world, I was not doing as well as I would have liked.  My HbA1c was been creeping up and my insulin doses were increasing. The thing was though, it really was not lack of effort. But the nuancing of the advice in my medical consultation made me think it might be.

Was I simply not trying hard enough (or was that just my paranoia)? No, I am beginning to understand that I, personally, have been on the wrong diet. And have been for 20 years. Any other condition managed with the wrong treatment for 20 years would rightly merit a lawsuit. The guideline advisers are getting knighthoods.

‘Any other condition managed with the wrong treatment for 20 years would rightly merit a lawsuit. The guideline advisers are getting knighthoods.’

 

Last year I decided to go on a ketogenic diet. Richard Bernstein convinced me a couple of years earlier, in his wonderful book, Dr Bernstein’s Diabetes Solution. He had type 1 diabetes for 20 years or so and had complications. Then he discovered the ketogenic diet and has not looked back. Most of his complications have resolved.  He has had type 1 diabetes for over 60 years and is fit and well.

I finally got round to implementing what I had read about this only last year. You see, I was getting desperate. I had had a few hypo crises, slightly more unannounced than before. Not unmanageable but I was needing to be more careful. They were a brooding shadow over my outdoor active lifestyle.

Worse, I was feeling old, with joint aches, general stiffness and generally fogged thought. Nothing specific, just below what I felt should be normal. I was also injecting higher doses of insulin with no improvement in control. Not a good place to be.

 

Click here to read: DIABETES CAN BE CURED! A DOCTOR’S PERSONAL JOURNEY

 

I turned to keto as a last throw of the dice. But it was difficult to reject the advice on fats and carbs that I had believed in for the previous 20 years of type 1 diabetes.

So now, 50% of my carbohydrate is refined sugar and I am in near permanent ketosis. Yep, I am taking the keto diet. Seriously, the diet only has 30-50g of carbs (recommended is 250g), but up to half of those are glucose tablets (refined sugar) to smooth out slightly low glucose levels I get from time to time.

I am still learning you see. But it is nothing really. The insulin doses have gone down by a third and with smaller doses of insulin and everything is smoothed out. Hypos are rare and the entry is so slow, I manage them easily.

‘Let’s not call it type 1 diabetes or type 2 but Type Me’

 

Cartoon: DES Daughter via Foter.com / CC BY-NC-SA
Cartoon: DES Daughter via Foter.com / CC BY-NC-SA

I now feel good. Vital in fact, with a marked improvement in clarity of thinking and vision, gradually reducing weight, absence of joint pains and improved stamina.

To celebrate my feeling of well-being, I cycled the coast to coast route from Whitehaven to Sunderland with my son earlier in the year. This was my first serious trip on keto. It compared well to one done 10 years earlier on a conventional diet. In fact, it was easier.

My glucose control was exemplary and I could concentrate on enjoying the trip. It was on that trip that the idea of pushing the boundaries of my diet and insulin management for type 1 diabetes was hatched.

I have purchased a continuous glucose monitor and it has been a fantastic investment in my health. Expensive, sure, and out of range for a lot of budgets. But I can get four weeks out of a one-week sensor if I look after it, and have dismantled the sensor injecting device in the hope of reusing old sensors.

If I manage to recycle the sensor before the blog ends, I will pass on the method. This continuous monitoring just speeds up the learning about food and how it all affects the glucose levels. Exercise can be monitored and action

Exercise can be monitored and action taken early. Devices are getting cheaper so hopefully they will become more routine in future.

With a condition like type 1 diabetes, everyone must be so different. We are all at different stages and ages, using different diets, exercise and insulins. I reckon I have Latent Acquired Diabetes in Adulthood. Plus lately, I think that some type 2 has crept in.

I reckon I have Latent Acquired Diabetes in Adulthood. Plus, lately I think that some type 2 has crept in.

So let us all call it not type 1 diabetes or type 2, but Type Me.

Personally, using continuous monitoring, the biggest surprises are how exercise raises glucose and it remains at a plateau for at least an hour. It must be the cortisol, adrenaline and gluconeogenesis, the internal process whereby the body makes its own glucose.

But it was a surprise, to say the least.

Click here to read: NOAKES: DOCTORS, DIETITIANS MAKE DIABETES A THREAT TO LIFE?

 

And, if I get it right at night the glucose is totally flat at about 4 night after night. It is, of course, the glucagon. We hear about it but rarely consider it in practice. I think that is because we obsess about carbs and glucose. Carbohydrate counting and injecting can lead to dose escalation and swinging levels.

I would reckon that fluctuating doses of insulin steamroller any glucagon response.  It was not news to me, but confirmed that the minimum time of action of rapid acting was three and a half hours for me personally. I am pretty sure that the cause is insulin resistance after years of injecting insulin and compensating with carbs.

It is a constant juggling act as we all know, impossible to get perfect in my case. It is common to over-inject insulin because of inaccurate counting, or eat more carbohydrate to reduce the risk of hypo. Then to re-inject to bring down a high, and eat carbs to compensate for the resultant hypo.

Photo credit: DES Daughter via Foter.com / CC BY-NC-SA
Photo credit: DES Daughter via Foter.com / CC BY-NC-SA

I have made pretty well all the mistakes.  So I have caused the conditions for insulin resistance that one finds in type 2 diabetes: high insulin and high carbs.

Thankfully, after only a year of keto that insulin resistance seems to be reducing. I look forward to seeing how much more improvement I can get.

I am expecting that it will take a couple of years to become a black belt in keto. There is a lot to discover.  But worthwhile gains are early and dramatic and happen in weeks. It is only the refinement that takes more time.

It’s difficult to describe the amazement of eating all the guideline wrong things and seeing glucose control improve. And the clarity of thought, and the energy. That’s another thing: when people start keto, you just can’t shut them up!

There seems to come a point at which everything falls into place and one “gets it”. At that point, it is difficult to see how one could have believed there was any other way.  Then comes the exciting stuff: getting into real food and striving to perfect glucose levels. It is such a relief to actually feel in control. I have viewed diabetes monitoring at my yearly review as damage limitation.

Am I getting away with it? If my figures are bad, my diabetes team harangues (encourages) me for not being strict enough. But what do they know of the daily struggle? Could my nurse do better given the advice she is giving me?

They are a great team, and I am fortunate that they are dedicated to a diabetes dunce like me. But the more I read, the more obvious it becomes that keto is the best diet for me.

I have done just about everything to improve carbohydrate and insulin balance, eaten all of the “healthy balanced” foods for 20 years. In just one year doing almost exactly the opposite, I am in control and healthy. For the first time since diagnosis, I feel that I might have a chance.

So now it is time to have fun. Next:  Click here to read Lemming Test-Pilot on: Assessing the risks of a ketogenic diet.

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8 Comments

  1. Many thanks for this post. I like your blog very much and
    so i am a huge fan of it. This is my first time posting here.

    I like this so much that I even shared on Twit.

    Thanks again for the excellent writing.

  2. Hi there! 37 year old Type 1 here diagnosed at 8. Recently discovered Dr Bernstein and your story sounds incredibly familiar! My body has been falling apart. Putting on weight up to 235 from a healthy 180 10 years ago. Lethargic all the time. 7 A1cs. SO MUCH EFFORT to maintain that. Hurting all over in joints and muscles. Terrible stomach issues. Drs won’t listen or help…

    I started Keto 3 months ago and 25 lbs melted off but have a way to go. I discoverd that I was WAY more insulin resistant than I thought. I takes me 1u novolog to drop my glucose 10 points. That is double what I thought it was before going Keto. I can tell because my A1C dropped from 7.1 to 5.5. My highs are 120s and 130s and 140s sometimes and so there is a much clearer picture of what is going on now. But damn do I struggle on some days to get it down from 120s-130s. I’ll be dosing several units every 3 hours and my glucose will remain flateline on my dexcom. Its infuriating. Not even eating during that period of time. This happens off and on. Some day better than others can’t figure out why. Some evenings I get really insulin sensitive and can’t seem to bring my sugars up on very low insulin so exactly the opposite but no where near as much as being resistant. Clearly Keto is a better way as my A1C is 5.5 and I feel GREEEAAAT! My body is shouting for joy and feels much better. My triglycerides dropped from 236 to 102 in less than 90 days. Hoping my insuling resistance starts to go down wish I knew how to help it more! I do also take 20 unites of Lantus per day and it normally keeps me flatline in the absense of food its just the novolog seems to have no or little effect sometimes.

  3. Hi there,

    First of all well done, seems like you are doing incredibly well!
    I have been diabetic for 21 years now and this month turned 31…I do not have very bad complications yet, but my diabetes was never really going “well”. Few days ago I actually came across the book of Dr Bernstein and I have to admit I am truly fascinated and scared at the same time as I feel there is quite a lot of restrictions of what you can eat.
    I wanted to ask you a question please – I am a super active person (gym 6 times a week – weightlifting and kick boxing) and even on a pump I cannot figure out what to do to have my sugar levels okayish, I always have to start with high sugar as it goes super low and then I end up with high sugar afterwards. I was wondering how do you manage your exercise without carbs? Any chance you could give some info on this? It would be much appreciated!

    Mags

    • Hi Mags, I’m not a doctor or a scientist. Best to speak to an endocrinologist or GP who specialises in diabetes and who will give you ALL the options, not just the bits that mean repeat business.

      • Hi Marika,

        Many thanks for your reply. I am fully aware of what you are saying, I was just wondering how do you manage the exercise part yourself. Could you please share what do you do?

        Thanks

        Mags

        • Hey Mags,
          Seems like a fair question; maybe Marika doesn’t want to be giving advice to anyone since we’re all different – pity since it would be useful to know her take on it.
          I’ve recently read about the affects of coffee and some recommend having a shot of espresso before working out – it raises the blood sugar a bit and can prevent hypos – I’d also recommend keeping a few dextrose sweets handy just in case.
          Good luck!

          • Hey Marius and Mags,
            Main reason I don’t comment here is that I’m not a type 1 diabetic. There may be an impression that I am – judging from one of Mags’s earlier comments? But it’s also mostly because I’m not any kind of specialist. Am happy to share my lifestyle exercise habits: I do Tai Chi daily. Have done for more than 25 years now. I’m addicted. The first form of exercise I found that conditions the body and the mind. Yoga does something similar, but there’s not enough movement in it for my hyperactive self. I used to do a harder martial art as well but also traditional. So no tournaments. Consequently, little in the way of injury. Now I do more Tai Chi and less of the harder art, only because of time constraints. I also meditate and walk as much as possible.

  4. Thanks for sharing, this is a really interesting read, and well done to the GP for speaking out. I have type 1, on CGM and pump, and am also a diabetes dietitian for type 1 people exclusively.

    I personally have tried all types of dietary approaches.I am a true believer in LCHF and I think for people with type 1 diabetes a good compromise is an intake of 25-100g carbs and then the rest of the diet made up from 30-50% protein, 40-60% fat depending on your preference.

    Interested readers should read Jeff Volek and Stephen Phinney’s excellent books on LCHF.

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