I'm Still In Shock - I'm getting MODY Testing

Before my diagnosis with diabetes I just presumed that healthcare practitioners were acting in my best interest, deeply competent and not corrupted by external influences. Instead as I’ve discovered from personal experience and more deeply looking into the matter my idealist view was just not true and was never true. And this isn’t just me, the fields themselves have questioned their own corruption. [Dr. Ben Goldacre][1] has been very vocal about the corruptions of clinical trials and the distortions that result in the regulation of drugs. There is a [renegade group of dieticians][2] who are fighting against the corruption of Academy of Nutrition and Dietetics by companies like Pepsi and Kelloggs. And I have repeatedly been surprised at the lack of knowledge about diabetes that GPs have. The don’t get much in med school and if it has been 20 years since med school they are likely quite out of date unless they made special effort to keep up.

But as you say, many if not most healthcare professionals enter the field and do their work with the best of intentions, but it isn’t just the face of the doctor we meet with, it is the entire system. And the system displays a surprising amount of incompetence and corruption such that as a patient I just cannot just accept things like diabetes nutrition guidelines or ADA clinical practice guidelines.
[1]: http://www.badscience.net/
[2]: http://integritydietitians.org/

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We are not talking about doctors ignoring folk wisdom or individual experience. We are talking about doctors ignoring a huge body of well-designed peer reviewed research that points to quite a few very clear findings, repeatedly confirmed by independent studies.

The old wives tales are mostly believed by doctors, but the “old wives” who spread them are actually young, single ex-cheerleader Big Pharma drug reps–and the venal high profile physicians on Big Pharma payrolls to the tune of hundreds of thousands of dollars a year for a bit of light work

There may be some intelligent, well-informed doctors out there, but over the past 30 years I have somehow managed to avoid being treated by any of them. Instead, I have had to deal with a series of retired-in-place people who can’t be bothered to read anything and get all their “education” from the reps. These are the clowns who told me that Avandia was perfectly safe and never caused weight gain, that incretin drugs are completely safe as the ADA debunked the findings that they caused precancerous growths in the pancreas (utterly untrue!). They are the ones who wouldn’t give me the insulin I needed because they claimed it would make me gain weight, who told me eating low carb would give me a fatal heart attack, who told me I didn’t have diabetes when I sat in their office with a meter reading near 250 mg/dl and who now tell their patients that it is dangerous to lower blood sugar below 6.5% even using diet alone.

Because of the visibility of my web site I get a lot of mail. My favorite letters are those from retired physicians who have been diagnosed with Type 2 diabetes. Every one of them says something along the lines of “I had no idea how bad the treatment I was giving patients was until I got diabetes myself.”

I don’t like to wish ill on anyone, but I sure would like to see a huge epidemic of diabetes strike the smug young doctors and lazy retired-in-place physicians to wake them up and give them some inkling of what they should be doing for patients rather than what they have let the drug companies manipulate them into doing for them.

Yes, but this by itself does not give you an idea of how many physicians who later develop T2 feel this way. It’s likely that the ones who come across your site but feel, “Yeah! I was right and my treatments were spot on!” just don’t contact you? No? There is probably a bias in your anecdotal data. :wink:

Obviously discontent with the way doctors manage diabetes is a spectrum, and I’m definitely sympathetic to some of @Jenny and @Brian_bsc’s points. And maybe it’s like George Carlin said about driving, “Have you ever noticed that anybody driving slower than you is an idiot, and anyone going faster than you is a maniac?”

But some of Jenny’s statements in particularly really take me aback, and leave me wondering whether Jenny finds people other than diabetes physicians largely inept and corrupt or whether she thinks there’s something about diabetes care that attracts these apparently pathologically flawed human beings.

But I don’t mean to pick on Jenny, I think we as a community, though we have some rightful beefs with the quality of care we get, also exhibit a striking lack of empathy for our caregivers. Sure, it would be useful if our clinicians could try being diabetic for a day or a week via a computer simulation (a less extreme version of Jenny’s hex where they all contract diabetes!). But the inverse might be useful, too–I suspect many of us might find it rather challenging to actually be that fantasy doctor against which we measure our real world ones.

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Back to the substance of the thread, and I don’t recall whether we’ve discussed this before specifically. But at least from my perspective, there are two additional variables that should be rather easy to pin down and are central to @Brian_bsc’s situation:

  1. Whether you exhibit any insulin resistance, i.e. how efficiently your body uses the insulin that it either produces or that you might externally inject.

  2. How much insulin your body produces when challenged.

Those are both easy to measure, the first via an oral glucose tolerance test with insulin levels, the second via a c-peptide (probably best if it’s non-fasting, could be glucagon-stimulated or simply 2 hours after a big meal with a fair bit of carbohydrate).

Before embarking on super-expensive MODY testing, I’d want to have good answers to those two questions.

Could a genetic factor explain it all? It will be interesting to see if that is possible. I haven’t read that much about MODY and genetic diabetes. I would be worried too about maybe have my treatment plan changed due to the results of the tests, but hopefully it won’t have any impact on that. Wow!!! I wish I had no hypos - you’re very lucky!

I wish you the best of luck with everything Brian!

I have to agree with Jenny regarding the tendency of T2 patients to be exposed to a flawed treatment paradigm. I’m not sure if the medical industry’s approach is based as much in medicine as it is perhaps guided or, more appropriately, corrupted, by private-payer insurance providers along with Medicare. I am T1, which is a bit different, but get yearly letters from BCBS’s “preferred” supply vendor telling me that “Medicare guidelines allow FOUR test strips/ day” or something to that effect. It’s signed by a doctor, perhaps, of pharmacy or something but he signs it as a doctor, or his signing machine does. There are plenty of doctors who, were the “number of test strip issue” to end up in court who might testify that 4 strips is enough, which seems totally ridiculous to me.

From online reporting by my DOC acquaintances, along with a few personal encounters and interesting cases I have had at work (I’m a claims adjuster, nothing to do with diabetes but being such a popular disease, it comes up…), I’ve seen that the approach to T2 dx is all over the board, one lab will circle say a 112 mg/DL test and another will give a 6.7 A1C a pat on the head and “you don’t need any medication” (these examples are from personal encounters as all of my work encounters are classified…).

Once the T2(?, and this can be questioned in many examples such as that of Manny H or @melitta) flag goes up, the medical plan seems to move very slowly. It’s very easy to admit a puking 16 year old who has lost 30 lbs and is in the fangs of T1 but someone with T2 might get some vague dietary suggestions, or a meeting with a dietitian (“be sure to eat 270G of CHO, with more whole grains, with lots of fiber” was my experience but I dunno how that might go…) and nurse, to get the “team” in action but then a follow-up in 3 months to see how that goes. I would give these plans more credibility if health insurers covered and mananged personal trainers to help folks get moving but they are silent on the applicability of non-drug solutions of that nature, even though most of my friends with T2 of one sort or another recognize the triad of diet, food and exercise is important. I’ve seen folks (these again are friends…) go a pretty long time with decent A1C results and kind of managing a variety of pills on a case by case basis. It seems that institutional insulin aversion is still pretty widespread. I am a huge insulin fan so I don’t get that but that’s the way it goes.

In terms of the DX path, it seems moderately suspicious to me (the claims adjuster again…although, of course, I’m on the insurance side @work…) that the standard plan involves cheap meds that are wildly varied in their efficacy at the same time more precise testing that seems likely to more precisely allow a treatment paradigm to be determined seems to fall outside of what is covered. While my survey methods are totally unscientific the trial and error method currently employed by the medical industry also seems disturbingly lacking in scientific rigor and seems to lead people to spend years struggling to get “OK” results while their condition is not managed as well as it might be with a little more focus on the O part of the SOAP to establish a better P.

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Well it has been two weeks since I had my blood drawn. I’m not sure how long it will take to get the results. I’m off this friday to the ADA Scientific Sessions. There will be a bunch of stuff on MODY including a movie I hope to see called “[Journey to a Miracle: Freedom From Insulin][1]” which is about MODY and features key people from Kovler as well Exeter.

As to your questions, I’ve never been granted a full OGTT with insulin measurements and I’m not convinced that it gives a good picture of IR. The gold standard for measuring IR is something called the Hyperinsulinemic-euglycemic clamp which is not used in a clinical setting. That being said, my most recent c-peptide was 0.4 ng/dl with a normal blood sugar. I’d previously had a few c-peptides that were in the normal range with a blood sugar of 120-160 mg/dl. I once had a stimulated c-peptide which showed a 6 ng/dl. It makes sense that with GCK my body would downregulate endogenous insulin production when my blood sugar is in the normal range (i.e. 80 mg/dl). And that I would have a normal fasting c-peptide with a blood sugar in the range 120-160 mg/dl (this was before insulin). And a GCK would respond to a “challenge” by producing higher levels of c-peptide as I did. And based on this paper by [Jones and Hattersley][2] MODY test is a probably a reasonable move. Anyway, it is too late. I just don’t know the results yet.
[1]: http://journeytoamiraclemovie.com/
[2]: The clinical utility of C-peptide measurement in the care of patients with diabetes - PMC

Agreed, and I’m definitely curious to hear about your results. That documentary looks intriguing. I’ll be curious to hear how it deals with the nuances and uncertainties, because my sense of the relevant literature is that it’s more suggestive, albeit fairly robustly so, than definitive (of course nothing’s definitive, but some things more so than others).