Friends who offer "cures" for Diabetes

Community
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Oh, sir, I must say, that I do have cake from time to time and not worry about it. It is just that my lifestyle does not prompt me to want cake everytime I see it rather in life or on TV. My bg's do not shoot through the roof if I have 'one normal' serving. You are absolutely correct in the posit, if one chooses to have a large slice of cake, ice cream and then cookies and then more sugary drinks at the party.

You are correct about management of T2 and the choice(s) of how to. What are the tradeoffs each of us are willing to make?

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I've just been told that 33 is equivalent to 5.2 on your scale.

http://www.diabetes.org.uk/Guide-to-diabetes/Monitoring/Blood_glucose/Glycated_haemoglobin_HbA1c_and_fructosamine/

Pulses are chick peas, lentils and beans. You may call them garbanzos or legumes - either way, Americans are just as able to Google as Europeans.

Insulin is a messenger. I injected it for 11 months, during which time my blood sugar got higher, so I stopped taking it and started cycling instead.

My theory is that I would rather improve my immune system than become dependent on artificial additives, especially since there is no way to take insulin without puncturing one's skin and I am not prepared to resort to ongoing self harm.

Does that answer your questions, mary?

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It probably doesn't answer anyone's numerous questions since it's very unlikely that anyone actually believes your story. We would figure either the dx'ed is off, or you are pursuing an interesting but dangerous strategy. While we say one test at a time, I think most of us recognize this as a distance event. Elizabeth Hughes lasted 4 years waiting for insulin but was very relieved when it became available. I'm very happy it's here too. I think it's great you've gotten off of it but I think that's an exception that's not likely to be of much use to at least 99% of the members here. Not because we are stupid or delusional but because many of us need insulin. While your story is great, if not credibe, I am concerned that newer members may grasp at your straw and decide they can not take insulin which may be a mistake. Please share some of your medical records, logs, BG meter downloads or other data so you can convince us that what you're doing is actually 1) safe 2) can be duplicated, a critical part of the scientific method. Thanks!!

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What detail do you want? Managing diabetes is an art, not science. I tried for years to get doctors to do three tests (on GAD, ICA and insulin) simultaneously because in May 2012 they rushed me into Accident and Emergency (which Americans call the ER and British people call A&E)because I thought I had Latent Autoimmune Diabetes in Adults, but they told me that since I was 41 years old it must be type 2 diabetes. I believe this was random use of numerical data, which contradicted the symptoms I was experiencing (poor concentration, a Body Mass Index of 21, and excessive sweating). All science can offer is probability statistics.

In A&E they tried to get enough blood to test for ketoacidosis, but even with needles in my artery, the most they could get was half a centimeter in a syringe and they needed 4cm. They told me they wanted to put me on a pump to inject insulin and water, so I asked them if they could diagnose type 1 diabetes. They said 'No', so I told them I could not accept a prescription without a diagnosis.

Three months later, I was taking the maximum doses of metformin and glyclazide without any effect on my extremely high blood sugars (122 on the scale on which they are now 33 and in which normality ranges from 20 to 53).

The doctors thought I would die, so eventually did a GAD antibodies test. It revealed over 2000 on a scale of 0-25 and that was as high as the scale goes, so I still believe I have Latent Autoimmune Diabetes in Adults. Whatever they call it, the medical staff were finally able to diagnose type 1 and I agreed to take insulin.

Eleven months is a long time to be sticking needles into your skin, but I believed doctors and specialist diabetes nurses knew how to treat people with diabetes, so I persevered.

Then one day I had to walk a couple of miles to run a creative writing workshop for well being. My blood sugars went too low. At that point I was on 11 units of levemir (a basal insulin). I reduced the dose to 4 units and my blood sugar went down further. The doctors told me prolonged hypos can cause brain damage and that it is better to take too little insulin than too much. My HbA1C test results t that time were 54, which is above the high end of normality.

Then I began enjoying 40 minutes of cycling per day and eating a lot of protein but stopped eating starchy foods. My blood sugars were so low that I began checking my glucose eight times a day and observing the downward trend over the next two months.

It is now ten weeks since I stopped taking insulin. My weight has fallen as low as I want it to go. My BMI is 19, so I am beginning to eat more carbohydrate and checking my blood sugars about three times a day.

A professor of diabetes told me I am 'buying time', so I am trying to learn more about T-cells and have booked onto a carbohydrate counting course, although I am not interested in this type of obsession.

What I really want to know is (a) in what currency I am buying time, because I would like more of it and (b) how to maintain my insulin sensitivity.

I would also like to know what the T-cells do once they have destroyed all of the insulin producing cells in my pancreas.
If I am on a honeymoon period, it has lasted since June 2009, when I was originally misdiagnosed as having late-onset type 2 diabetes.

Frankly, independence is more important to me than safety and I do not want to live with diabetes if I can help it. For this reason, lowering my blood sugars indicates a form of recovery to me. Long may it continue, and thank you all for your patience in the meantime.

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I am not an insulin user but I have read a lot about T1/LADA here on tuD. An alternate explanation for what you describe is that you have slow onset LADA and you may still be producing a significant amount of insulin. You have reduced your carb intake significantly perhaps to the point where your pancreas can handle the load, thus the much lower blood sugars.

I can think of at least one member who was able to control her LADA in it's early stages with the use of a low carb diet and lots of exercise but eventually her blood sugar started to rise, and she had to start insulin.

I would urge you to keep testing in case your explanation for what is going on is incorrect. If you are correct the proof would be when your test results for autoimmune factors have returned to normal. Until this happens it is wrong to speak in terms of reversal or cure. Control, perhaps only temporary, is a more appropriate term.

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I, also, have LADA (dx in 2004) and my story, as well as most of us with LADA here and on FB, is similar: misdiagnosed, looong honeymoon, lots of misinformation and misunderstanding. So I sympathize with your anger and frustration.

I was lucky because after a month of struggling and a well-placed tantrum, the endo to whom I was assigned actually knew about LADA. I've also spent the last year doing research and writing a play, The Sweet Lowdown, about LADA, the science and the basis for the myths about diabetes. (I just woke up at 67, which is low, so if this rambles we'll blame it on that)

To answer your questions: High blood sugars traumatize all sorts of tissue, including beta cells. They don't die, they just refuse to work, hide out. Think of a Klingon warship. But, when they're less aggravated, they come back, or at least most of them do. Diabetes is progressive; gradually fewer and fewer work. Flu, stress take their toll. I bounce back, but never to what I was before. Meanwhile, titrating the insulin is complicated, moreso than either T1 or T2, because our insulin levels fluctuate: if we go high, we need more to compensate until the betacells recover, then when they do, we go low. I've learned from parents writing about the first few years of their kids' honeymoon not to be afraid to change dosage to compensate. Think of it as surfing. Tiny movements so you don't flip the board, up a little, back a little, test often (LADAs test a lot, love my G4). My endo and CDE let me steer unless I get it screwed up. It's exhausting, particularly because we aren't insulin resistant but terribly sensitive to tiny changes. And lows are scary, like earthquakes, but you learn to ride out the mild ones (3-4 glucose tablets or boiled sweets, then wait 15 minutes, which is the hard part). Have someone, even a stranger, wait with you.

Autoimmune antibodies also like thyroid. I now have hypothyroidism and my thyroid works like my pancreas (when it wants)

Carb counting is hard at first, then becomes almost automatic. I put Calorie King on my Kindle. After eating certain things over and over, one memorizes the number. I have a scale in my kitchen to weigh fruit, just to eliminate surprises. Grams of carbs just become another set of numbers you know, like your cell phone number or pi.

Like you, I eat protein, vegetables, what you call pulses, not just for blood sugar, but because they are less boring and tastier than white rice. Diabetes is my excuse to eat wonderful, delicious, beautiful food.

Last question re: buying time. You are buying time so you can ride your bike with the wind in your hair for many years. We live with diabetes. We thrive, maybe better than many without because we are aware of how good life can be.

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Treating the lows (and I have some whoppers) is the hardest. The forebrain says 'that's enough carbs, the hind brain says MORE, MORE.

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Hunya,
It takes a long time to kill you. Diabetes is not cancer, and frankly nobody knows how long. Now if your pancreas stops altogether and you blood sugars start approaching 500 without insulin, now that will kill you. Not really diabetes so much, but you will get an infection and blood poisoning, or heart disease, or go blind, or lose feelings in your toes or limbs, kidney failure, and once one of those things start happening, it is hard to fight off the others from eventually making it so your body can't handle it anymore.

When I say long time, I could mean 20 years, even longer. 14 when I was diagnosed, 52 now and my care and A1C's has never been spectacular, yet my blood pressure, feelings in toes, no retinopathy in eyes, kidney function, all completely normal. If I croak tommorrow, I gave it my best shot.

We are all different though.

Insulin is a tricky thing, and if you don't like it now, lucky you were not taking it in 1975 when it came from pigs and cows and was one big roller coaster ride. In those days you could not miss a meal time by 15 minutes, and the highs and lows were quite substansial.

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Hunya, is it really necessary to make snide remarks about people you don't know?

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Exactly Bad Moon.

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Mary,

You get it. It is important that people with experience of volatility do have occasional outbursts. Otherwise it is too easy for diabetologists to categorize us, when all any of us are really doing is attempting to achieve some kind of dynamic equilibrium, whilst tolerating an invisible imbalance, which we may fear will be mistaken for hypochondria.

It is hard being self-contained, when the fuel we depend on depletes unpredictably.

I would like to learn to warn people that my mood may be unpredictable. Dave Davis's original question is so valuable, because a lot of people with diabetes find their social lives depleted through consideration for other people, who may or may not care how they treat people.

Diabetes is hard. I am totally honest, but there is no reason why anyone should believe me. I wish I did not care, but I do. Now I am surprised and grateful that someone can understand.

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Which people?

Not everyone speaks American. I have a friend from Florida staying at the moment and am attempting to learn your vocabulary, but it feels unnatural to me to force such word usage.

When something as basic as honesty is being questioned, I need to use my own words. I try not to resort to Anglo-Saxon or superficiality.

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I couldn't be as civil as you under these circumstances. I'm not a person with anger management issues, nor violent or anything, but I couldn't walk away from that crapola without asking with deadpan seriousness, "have you always been this stupid?"

Then I'd walk away.

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Samuel, that's great news! You deserve a lot of kudos, and should be very proud.

If the approach you are taking works for you, and you aren't feeling compromised in your quality of life significantly, you've found the right treatment protocol for you.

It is critically important, though, that anyone following this sort of regimen not be misled into believing it is a cure of any sort. It is simply a treatment modality.

It is no more a cure than someone with milk allergies avoiding all dairy products being cured of their allergy. They still every bit as allergic, they're simply modifying their life to manage it.

Same with treating diabetes, successfully, with diet, exercise, and lifestyle changes. For some people, these changes don't amount to restrictions for them, as they are already fairly compatible with what they like to do already.

Yet, they are still a T2 diabetic, just as much, for the rest of their life. In fact, there are many of us that would claim they are actually progressing their disease faster than if they were to go on exogenous insulin treatment (in addition to the already excellent diet/exercise efforts), because their still stressing their beta cells 24/7 for basal insulin and food.

The mistake made so often is the idea that achieving good BG profiles constitutes a "cure" or that "everything's normal" is just so wrong -- dangerously so.

When you have a 95 in the morning, that's great! But have you thought about what your body's doing to get there? With T2, your pancreas is still having to pump out enormous amounts of insulin, many times more than a non-diabetic. It's just that your beta cells, as they currently are, are up to the task.

The fact that you have to make any accomodations in your life to control your BG demonstrates that you've already reached the point where some cellular exhaustion, degradation, and possibly cell death has already occurred. This is because of your insulin resistance.

And that resistance doesn't go away with modified diet/exercise, and controlled BG. It is a treatment for the problem, and masks the underlying pathology. But it doesn't go away.

With exogenous insulin, you take the pressure off your pancreas. Beta cell exhaustion is a widely held hypothesis with some experimental backing. I believe I've seen this in action in my own experience with insulin treatment: Over 3 months since I started, I've seen my need for exogenous insulin decrease, my sensitivity apparently increase a little, and most interesting, the cieling for my highs when I go off the reservation drop considerably (implying the pancreas can now step in and juice up better than before, because it's resting most of the time -- I'm supply my basal and meal needs exogenously).

The first month I was treating myself with MDI, BG under tight control, if I pigged out on a bunch of carbs without bolus precision my BG would shoot up to 300.

Now, almost 4 months later, I can eat like Fat Lady at the circus, forget to bolus for it (that's what happened last night), and never go above 180-200.

I attribute this to a happier, healthier, pancreas. I'm just as insulin resistant as before (my carb ratio's been the same for 6+ weeks). So it's gotta be insulin coming from somewhere.

Long, long post. Important though, in my view. While you have been able to control your BG without oral meds or insulin, in my opinion you're doing more damage that way than if you were using insulin. It's ironic, but clinical results with diabetics seems to be supporting that theory more and more.

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Hunya, I said snide, not nasty....Americans are just as able to Google as Europeans is snide, if you read your posts after you entered them, you should have known that. The more overbearing you get, the less likely anyone is to listen to you. Everyone handles their own health in their own way, and no likes to be lectured on what they should do, especially by someone who doesn't know anything about their circumstances or what they are doing (or not doing) about it.

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So let's not pick on Hunya either. To get back on topic, having someone question how you manage your blood sugar, especially when one already wonders whether one's healthcare team can be trusted(and being initially misdiagnosed makes one wonder)while dealing with ricocheting blood sugars because one's pancreas decided it might or might not come to work today MAKES ONE A BIT TESTY and scared. However, biting people's heads off, although extremely low-carb, increases stress, which increases blood sugar. Not knowing how to fix things and not knowing whom to trust are terrifying. And with LADA, your pancreas doesn't betray you once like it does with Type 1. It plays a guessing game for years (10 for me): Guess how much insulin I'm going to give you now? Oops, you guessed wrong.

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Sounds like she relates slovenly to laziness to diabetes. I had an Aunt that thought that. Until she became Type 2 and couldn't figure out why, because she was not a "lazy and slovenly type person" Flip-flops. That's a new one. LOL People are strange, aren't they? :) Thanks for sharing Lauren.

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That's awesome Samuel. Thanks for the input. I appreciate it. :)