Meanness in the Management of Diabetics


#21

I have most definitely experienced direct meanness from Endos before. And I don’t mean telling me I need to control things better, I mean raised voice/yelling about how bad I was doing and further increased by the fact they didn’t know how my pump worked and it didn’t use the same names for things they were used to and so somehow that was my fault? And then they proceeded to try to get me to switch to the pump they liked WHEN I WAS A LONG WAY AWAY FROM MY INSURANCE PAYING FOR IT since mine wasn’t out of warranty. This all on the first visit no less. My current endo doesn’t always have the best bedside manner, but he is far beyond the last example. There are very few options in this area too, and I am fine sticking with what I have now lol. He doesn’t harass but does encourage you could say.

As to complications, I have some, likely due to quite a few years of iffy control with a1c in the 8-9 range. In the past 3 years I have really focused and am finally in the 5-6 range. Even if the past will continue to cause more complications, I still feel better overall, and am hopeful complications will reverse some, and future ones will be prevented. I’m not going to deprive myself of the good things in life though.


#22

From what I’ve seen, there’s a strong genetic component involved – some people are more likely to get complications, some are somehow more resistant to complications. But yeah, the medical community in general needs to look at individuals and work on what’s best for THAT ONE PERSON - not fall into generalities… Personalized medicine - let’s get there, already!


#23

A lot has been published on the genetic component of diabetic complications, not only in establishing a disposition to develop complications more readily in response to hyperglycemia and even to developing them spontaneously, regardless of blood sugar levels, but also as a protection against developing them no matter what the blood sugar levels, thanks to an inherited protection of superior DNA repair mechanisms. You can see this in a large percentage, but not all, of the 50-survivors (but not me).

For an example of one study on this issue, see:

Curr Opin Genet Dev. 2018 Feb 13;50:17-24.
Genetic basis of diabetic kidney disease and other diabetic complications.
Sandholm N1, Groop PH2.

Abstract
Diabetic kidney disease and other long-term complications are common in diabetes, and comprise the main cause of co-morbidity and premature mortality in individuals with diabetes. While familial clustering and heritability have been reported for all diabetic complications, the genetic background and the molecular mechanisms remain poorly understood. In recent years, genome-wide association studies have identified a few susceptibility loci for the renal complications as well as for diabetic retinopathy, diabetic cardiovascular disease and mortality. As for many complex diseases, the genetic factors increase the risk of complications in concert with the environment, and certain associations seem specific for particular conditions, for example, SP3-CDCA7 associated with end-stage renal disease only in women, or MGMT and variants on chromosome 5q13 associated with cardiovascular mortality only under tight glycaemic control. The characterization of the phenotypes is one of the main challenges for genetic research on diabetic complications, in addition to an urgent need to increase the number of individuals with diabetes with high quality phenotypic data to be included in future genetic studies.


#24

HI, 48 years Type 1 here. Yes, those early years were rough. Poor prognosis, urine testing only, no correction injections, restricted and monotonous diet — must eat same amount of each food group each meal because they didn’t realize the role of carbs yet. When I was diagnosed at 15, the endo told me I might not live past 25 or 30. Talk about mean… I decided that if I was going to die young anyway, that the quality of my life was the most important thing and I just wouldn’t worry about diabetes, other than doing the minimum to keep myself alive. Luckily, high blood sugar doesn’t make me feel that bad. So for the first 20 years I had poor control — H1C probably 9, 10 or higher — but my life was interesting, full and carefree. My endocrinologists nagged and berated me, so I avoided going as long as possible. I actually made a “deal” with my previous endo to only come in once a year. Luckily, I have no major complications so far. I’ve always wondered if being in diabetic denial and not worrying helped in some way. If hyperglycemic memory is real, then I have hyperglycemic amnesia! hahaha

However, when I turned 60, I was diagnosed with the very beginnings of heart disease (which my non-diabetic sister also has). That finally got me worrying about the long term effects of what I like to call “marinating in sugar”. I found a new endocrinologist who doesn’t make me feel guilty and who I don’t mind seeing 3 times a year. She put me on the pump/CGM this past fall which showed that I was insulin resistant, so now I’m on a low carb diet (ughhhh).

My A1C has improved, but I find the pump a constant reminder that I’m diabetic, which I hate. So I worry less about long term complications, but experience a lot more daily anxiety about the constant fluctuations. I’m slowly learning to stop looking at the thing all the time, and I hope to eventually recapture some of the carefree aspects of my “non-diabetic” life.


#25

There have probably been a bunch of times where I was on the receiving end of “meanness” on the part of the medical community over the last 32 years. The two that stick in my mind the most are one the first week I was diagnosed and then one just recently.

When I first found out I had diabetes I was 26 years old and had been married about two years. We weren’t planning to have kids just yet but it was understood they were on the horizon after we buy a house, etc. I saw so many different drs and medical professionals the first week. It was overwhelming. I saw one dr that was a woman and an endocrinologist. After she examined me and my charts, she said “you weren’t planning on ever having children, were you?” I was and I did. I have two kids that I gave birth to myself. It was hard. No doubt about that. It wasn’t impossible.

The most recent thing, a couple of months ago I was seeing a different dr who had his own nurse. My regular dr, who I love and feel very safe with was out on a medical leave of his own. Anyway, this other dr was writing me some new prescriptions. When I asked for enough strips to check my blood sugar 8 times a day, his nurse piped up and said insurance won’t pay for that. Insurance will only cover three strips a day. So I said that’s not enough. What was I supposed to do about the other five a day that I need. The dr shrugged his shoulders and said “out of pocket” like he could have cared less about my situation. They were both wrong by the way. I told them to write the prescription for eight a day anyway and that I would take it up with insurance if there was any trouble, which there wasn’t. When my regular dr returned from his leave, he was appalled when I told him that story. Those other two were stupid and uncaring. I’m still bothered by it. This is my life and well-being we are talking about. They just shrugged their shoulders like I could afford all that out of pocket and were happy to hand out misinformation.


#26

The results of this paper aren’t actually difficult to explain, in context. The size of effects are rather small, and there were far more Type 2 studies (18) with larger number of patients than Type 1 studies (7). As an active researcher, peer-reviewer, and writer in biological science, those results scream “interpret with care;” it is quite likely that sampling error or random error from small sample sizes are involved here.

I’m not dismissing the results of this study, or the ideas that high variability in blood glucose is or is not related to development of microvascular complications. What is clear from perusing the published literature is that:

a) this is a relatively new subject of study, and that there are good mechanistic reasons to suspect that BG variability is related to development of complications;

b) there is insufficient evidence at present to support a strong correlation between variability and development of complications in either Type 1 or Type 2 patients;

c) there is insufficient evidence to dismiss the connection between variability and development of complications in either Type 1 or Type 2 patients.

This is not an infrequent occurrence in research when there are phenomena that likely have multiple contributing factors. It takes significant time and research effort to disentangle different factors and meaningfully interpret the results of experimental studies (especially in human-subjects work where direct manipulation of subjects and subject conditions is constrained).

However, given the strong mechanistic reasoning for why many researchers believe there likely is a connection between variability and complications, it makes sense to me to reduce variability in my management as much as possible. There is certainly no reason to suspect that there is a high cost other than effort of treatment (which, admittedly, can be significant for some or many patients). Hypotheses of this type are not easily confirmed or dismissed with simple studies or even simple review studies. I’m fairly comfortable in suggesting that the jury is still out on this issue.


#27

T1D 52 years. Good glycemic control for the last 18 years. I do have some complications but have been extremely blessed because I can still exercise an hour a day and was able to work full time 40 years and not have to get disability.
Even with the hypoglycemic memory, some complications can be improved such as neuropathy, at least that’s what I was told by my podiatrist.
Tighter control makes me feel physically better and by wearing a CGM, I’m much more alert for hypoglycemic events.
My doctors see patients every single day that literally do nothing to control their diabetes so when my endo scrutinizes my CGM history and lab results, I listen patiently and assure her I’m doing my level best. I can’t possibly prevent all lows but am doing all I can to stay in range. I’ve had tons of stern lectures but know in fact it’s the standard way to deal with less motivated patients. I also think no matter what stage of diabetes we’re in, it’s never too late to practice good management techniques.


#28

As a rule, PCP’s are relatively clueless when it comes to treating (and for that matter, diagnosing) T1, so you’re lucky to have one who doesn’t fit the pattern. Alas, the stand-ins you encountered are more typical than otherwise.


#29

I think whether you have complications from T1D just amounts to luck. The difficult part of a study like to DCCT, while it showed the important correlations between glucoselevels in the long run and the development of complications, the correlations are true when you look at a large group of patients. But when you consider an individual with T1D, this person is going to develop some or no complications or death and you can never be sure that it was the management of the diabetes of this particular patient that prevented or caused the complication(s). I have had really bad Hba1c’s for many years because of an eating disorder and the only time I was in good control of my diabetes was when I was pregnant. My Hb1Ac’s these days are usually between 7,5 and 8,5. Still, I have no complications at all (I developed hypertension, but that can be genetic as well). I consider myself lucky. It always saddens me when I hear people with T1D blame themselves for their complications.
The whole idea that people with diabetes can prevent complications by keeping their glucoselevels as close to normal fits nicely into the mainstream thinking of our time, where people believe that you have your own destiny in your hands and people should be judged on what they accomplish (meritocracy). I learned this valuable lesson at medical school when an oncologist explained that numbers like you have a 30% of survival mean nothing to the individual patient, because you either die or you don’t.

I think there is a lot for us to do as patients with T1D, educating our endocrinologists and other medical professions about the day to day stuff we have to deal with regarding our diabetes. I for one always make a fuss about being called a “diabetic” (I also never call myself al diabetic) and explain to the healthcare professional that I’m a person/patient with diabetes. We don’t call patients with cancer or multiple sclerosis or any other disease by the name of their disease: cancerotic or multiple sclerotic or whatever.
It’s also very important to remind healthcare professionals that they should stop blaming the patient, but blame the disease instead.

When a person with diabetes gets complications it’s easy to say that he or she didn’t take care if their diabetes. I hardly here physicians or nurses say that when a patient gets a complication in the hospital, like a wound infection or a pressure sore, it’s because the individual physician or nurse that was taking care of the patient didn’t take care of the patient well enough. It’s seen as a complication that can occur and preventive measures to try the occurence of those complications are important, but it’s not the doctor or nurse that is to blame. Somehow, because people with T1D manage their disease themselves, they can be blamed for not taking good care of themselves. As if our only job in life is taking care of this disease! And if it was my only job, I would love to get paid for doing it and throw some vacationdays in there as well! The only thing we get from taking care of ourselves is not dying and making the best of the rest of our lives. What a life!


#30

After the DCCT came out, mean-ness started in my healthcare interactions.
It didn’t help that I was in the middle of puberty, dealing with hormones, increased appetite, and reluctance to exercise with a new jiggly figure (I would have given my first born child for a decent sports bra back then, but they didn’t exist - beige and uncomfortable was the only option).
Every time I saw a doctor I was berated about weight gain, poor control (my HbA1c was about 8.5% and I was on one injection a day), and warned about blindness, renal failure and amputation.
So like many adolescents, I opted out of health care altogether for many years. I always had insulin, because it’s hard to function with out it, but didn’t test, and enjoyed leaving home at 17 for a gap year then university.
I spent the next 8 years at uni, but I’d opted back in to healthcare after my first degree, and used MDI and a pump.
But the attitude of health care providers hadn’t changed, despite me having a good HbA1c, and I really started hating going to endos.
My control is close to non diabetic these days, but the blame game still continues. I avoid endos as much as possible. I’m educated, self reliant, and don’t need that sort of rubbish in my life. I actually get a full on fight or flight feeling when I have to see an endo (usually just for a new pump). It makes me feel ill for a good week before an appointment. Spiders and endos, such fabulous phobias to have🙄.


#31

DRBB, I am an RN with a stepdaughter diagnosed with Type 1. She was diagnosed at 7 and is now 16. She has never followed what her specialist recommend. She eats everything she ihas been advised not to, no exercise, and for the past 4 years she no longer even puts her carbs in. She is only checking sometimes once daily for blood glucose. Her H1C is not below 10 and hasnt been for 8 years. Her parents are completely fine with her numbers being in the 200 and higher range and dont get rattled with 450. I dont understand. I know they love her but this is that little babies life and the future of. I have tried to talk to all of them but they believe Im blowing this out of proportion. Im their own personal RN and they choose denial. Im all for denial when the psyche needs a break although now we are into lifelong complications. I am no DR but I did graduate from a top ten school and umderstand, with complete non compliance diabetes is a very unforgiving disease. I need advise, please and thank you.


#32

I was diagnosed in 1966, when there were only two methods to test for blood sugar, urine sugar analysis with Clinistix, which was very fast and easy, and urine sugar analysis with Benedict’s Solution, which was incredibly slow and difficult, requiring test tubes to be prepared and cooked to the boiling point on the stove. Both were utterly useless in measuring the actual hyperglycemia level of the patient, since urine sugar measured not just hyperglycemia, but also the renal threshold for dumping sugar into the urine, as well as the amount of fluids the patient was drinking and the frequency of urination.

And yet, knowing quite well that both tests were equally useless, doctors at the Joslin Clinic used to insist that we only use the Benedict’s Solution method to test, since it was ‘more accurate’ in measuring this utterly irrelevant factor! I used to be fumbling with boiling test tubes while my hands were shaking so violently from hypoglycemia that I could hardly manage, and yet the urine test would show the sugar to be massively high, simply because I hadn’t urinated since it had been high many hours before. Ridiculous, yet since the doctors sadistically wanted to punish the patients, they still insisted on the most cumbersome and inconvenient test imaginable, and demanded that the test be performed time and time again every single day.

I have found this same sort of thing happens in all areas of medicine where nothing can in fact be done to help the patient, so the medical system reverses and goes into punishment mode, trying to control a medically uncontrollable disease by disciplining and inconveniencing the patient in useless ways, just to assert the dominance of the profession over the disease in some indirect and symbolic way.

In transplant medicine, for example, there is no known way to prevent the loss of transplanted organs which occurs through chronic allograft nephropathy, so more and more burdens of monitoring are imposed on the patient to clock the rate of decline of the graft, but nothing can be done at all these appointments but calculate how quickly the patient will be back on dialysis. No wonder the phrase, ‘Take your medicine!’ is an insult rather than, as it logically should be, an example of helpful advice.


#33

You are a bitter person as well as think you know everything. Maybe someday a doctor will save your life…maybe not…your bitterness helps no one!


#34

@David61
Save your breath. I don’t think they read any replies.


#35

Though I do not agree with many things you’ve said in this thread, I definitely have felt this way at many points in my various experiences with healthcare, both for myself and others.

Most recently, my experience over the past year with so-called cholesterol management. My lipids have nearly always been in the “normal” range for a non-diabetic/non-CVD patient, yet, due to the artificially-set “standards of practice,” I regularly get bombarded with demands from my doctors to take statins. My family history of “statin-sensitivity” (and genetic testing, confirming that I carry that trait) coupled with my otherwise “normal” numbers had been holding off action; however, I did have one less-than-perfect test result. Rather than retest a month later, that test result pushed me into taking a nuclear stress test, trying a “very low dose” statin, and taking a PSCK9 inhibitor (Praluent).

Results (so far): Stress test: above normal/normal blood flow throughout – BUT, because of my $3000 deductible at the time, an OOP cost of $3000+. Statin trial resulted in ALL of the anticipated adverse side effects (no OOP cost, but temporary QOL cost), and the Praluent resulted in a big insurance “battle” that ended with my doc gonig through /medical/ (rather than pharmacy) – with an OOP cost of over $500 (again, deductible!). Oh yeah, Much better than anticipated lipids numbers – but, is that really WORTH IT??

So, I’m out over $3500 that I do not know how I will pay, have a cholesterol panel that is “outstanding” on the artificially set standards, and am taking a somewhat uncomfortable injection every two weeks that I don’t even know actually does me any good. Why? Because I’m physically/genetically unable to follow the standards that have yet to be proven worthwhile!

I can give more examples, but this one is driving me crazy, currently…


#36

Sadistic punishment? Really? Even my 1970s mediocre suburban-mall nearly-failed-medical-school doctor knew that urinalysis wasn’t meant to measure the actual levels. Rather, those test-tube results gave the patient and the doctor a good overall picture of control – by the only readily available method known at the time. A patient who frequently had “high” tests during the week, or every morning, obviously needed a different treatment plan. A patient who predominantly had “negative” or “trace” results was deemed to be well treated.

Primitive, yes. In hindsight, many things are. But it was the best we could do with the tools we had. The first blood glucose meters, of course, changed that game for everyone.

Sounds like someone forgot to tell you about the “first void/second void” routine.


#37

Beacher: A careful reading of my comment will show that my complaint was not about urine sugar testing per se, but about the insistence on using only the most cumbersome but slightly more precise method of measuring urine sugar, Benedict’s Solution boiled in test tubes, when the entire exercise of urine sugar measurement was so totally imprecise.


#38

Where is the triple thumbs up button…


#39

Let me consider, in this context, my oft-voiced complaint that I was kept on R/N treatment for long past its sell-by date. I experienced it as cruelty, in a sense. Particularly in “hindsight,” when I realized how many years I spent locked into it after better treatment (Lantus-Novolog MDI) had become available. Better in the sense of being less restrictive and more humane. It actually makes me angry, in retrospect, because I had heard about MDI from one of the few T1s I ever met back in the days before the DOC, and I did ask my PCPs about it, and about getting a referral to an actual endocrinologist, and kept getting turned down because of the crappy university-based HMO healthcare I was stuck with. “You’re doing fine, let’s not change anything,” they all said.

But like I say, whereas I experienced it as “cruel”–I used to refer to R/N as ENOD: “Eat Now Or Die,” and the thought of it still makes me shudder–my Dr’s weren’t being sadistic; they were non-specialists dealing as best they could with limited resources. “You’re doing fine, let’s not change anything” translates as “I barely know what I’m doing with R/N, and I don’t have time to investigate some complicated new regimen sufficiently to oversee a patient using it.” And even though I hated the stuff, it was state-of-the-art treatment when I was diagnosed and a major improvement over the previous one-shot per-day Lente regimen, which I fortunately missed by a few years. If I’d started out on Lente I’d probably regard R/N with as positive feelings as I have toward MDI. I’m on a pump now but I still regard MDI as a life-changer. Yet I know lots of people who started out on MDI and moved to a pump who regard MDI as negatively as I look at R/N.

So it’s all kinda relative.


#40

Yup. (Me too)