So, I’ve been talking to you all for a long time.
But, if you had to summarize your life experience, how would you say that the medical system has failed you? Has it failed you? If not, you can write that too.
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I had a hard time transitioning from a very progressive leading-edge-treatment pediatric endocrinology department to an adult-oriented endocrinologist. (Even within the same large state University health care system). This was in the late 1980’s.
At the time, all the adult-oriented endos regarded insulin use and home bg testing as the exception (if their adult patients did any testing it was urine testing) and didn’t know much about it, nor did they know squat about MDI (vs the “everyone else taking insulin does just one or two shots a day, whaddya mean you take insulin with every meal?”)
To be fair, this was before any DCCT results were announced and they were all old fogies. So I was very lucky that I had such progressive tight-bg-control-target pediatric endos before. And when I had seen the pediatric endos they coordinated all my health care in one place, and when I transitioned to adult care I found that I all of a sudden had to be my own coordinator and did a very poor job.
Old fogey adult endos were the rule in the 1990’s, but in the past 20 years they’ve all retired and now I’m older than my doctors :-). That said, I’m sure that the transition from pediatric endos to regular endos is challenging for a lot of folks even today.
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Things really changed 10 years ago. Ran into some hurdles, started learning a lot more about diabetes, and of course found Tud. Eventually I became resentful of the doctors who told me that my lab work had been “good”, “pretty good” or “not bad” for the last 20 years. I hate to think about what my A1Cs were during that time, Why did I even bother with all of those appointments? I often think of this.
I’m a little embarrassed for even thinking that now. I’d like to think I’ve gained a tiny granular amount of perspective on this.
The system hasn’t failed me… but I still wish they had been a bit more aggressive with treatment sometimes.
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I, like many, was originally diagnosed as a T2 based on body type alone. I was pushed onto metformin which helped…a little. They added sulfynureas, more metformin, other T2 drugs and the effect was marginal. My diet and exercise level were blamed based on assumptions from the Dr (who never asked what I ate or what my actual activity level was, or questioned a 90 lb loss in 3 months). Instead I was told to do more to control my BGs and that I was the problem. I ended up in the ER hypoglycemic 3 times in the first 3 years partly due to the combo of pills I had to take that left me with limited BG control. I eventually left this medical group because I changed employers and could not afford health insurance. I got by on diet and exercise for a short time, but eventually the 200+ BGs everyday were an issue. Hello Walmart insulin!! Based on what I had read here and elsewhere on the internet I started a conservative insulin regimen to which i responded well (with some major BG swings and precipitous dropoffs as I learned about stacking, tails, and I;C ratios, etc.).
I started a new job with actual insurance, and my PCP accepted the T2 diagnosis and put me right back on metformin. This time though my body was not happy with Metformin and the side effects were growing everday. 3 months later I was off. Again admissions to the ER for Hypo and DKA events were becoming commonplace. Several years later, a multitude of pills later, and much lambasting about my diet, weight, exercise, ya ya ya the usual T2 your the reason for your diabetes mantra and things were escalating. In exasperation, my PCP sent me to an Endo who after listening to my last 10 year history asked if I had ever been checked for T1. Nope! 3 days later I was classed as a T1/LADA and put back on insulin where I have stayed and thrived ever since.
I hesitate to think what the end result would have been had I not ever seen an Endo and my healthcare team continued to blame me for my high and extreme low BGs without ever examining the why? My original diagnosis Dr worked for a for profit organization who generally had 6-7 minutes for me in my billed 15 minute appt. When I resumed healthcare I targeted not for profit health care who takes the time I need and is willing to discuss alternatives beyond shoving a pill down my throat. Rant over.
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Ooooh, thats a rough road, El_Ver. Ugh. I didn’t know you were a LADA.
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It’s the journey that matters, and the end result - not the nonsense. It has made me a better healthcare advocate for myself, and I am now much more knowledgeable than most of my peers when it comes to dissecting health plans to find the nexus between cost and value.
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two ways both as a child.
As a teenager I complained about my chest hurting and did so for years. At 48 I had open heart surgery to correct an arteriovenous (AV) fistula. A naturally occurring connection between the arterial and venous systems in my heart. The doctor comment - These are corrected when people are kids. oops.
Recently at 62 I found I have to have an awful case of spinal Kyphosis corrected. It is something that is also usually corrected as a teenager.
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My type 1 story is very similar to @El_Ver 's… Although I never got DKA or had ER visits as I was put on insulin. I refused to take the drugs they kept trying to give me as they made me sick and didn’t work well. No you’re not type 1, even though you had an uncle die from it. I was also a vegan and ate healthy and swam 75 gym laps in a pool 5 days a week.
I think because I was overweight that I was typecast as a type 2. That seems to be common in a lot of people, it wasn’t until I switched doctors I was diagnosed right after over 8 years.
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You wonder. How do they get away with it?
I work in healthcare, and yet of course like 100% of everyone, I am also a patient. Every time I go to the doctor’s or in for a procedure, I am viscerally reminded of how helpless patients can feel, as I feel the same way. I ask the same questions, express the same doubts and worries, and require the same reassurance. I am also in an awkward position of figuring out whether to be patient with practitioners, new or otherwise (whether techs, nurses, or doctors), or be more vocally demanding. Before I became a nurse, medical stuff was no problem - sure, do whatever you want!, was my philosophy. But since, I am much more on guard. It’s awful in a way. As a worker, I do my best to advocate for patients - to understand their conditions and research the medications they are on, as well as try my best (not always easy) to understand their unique approach to their own health or disease. I am lucky right now, because where I work is well-managed so I have the mental space to work very hard for individual patients. As a patient, it’s a losing game to expect the same, so I try not to. And then I can be pleasantly surprised if someone gives me a bonus insight or tip or caring word or pat on the back. But I should not expect it.
Interestingly, what I have noticed in two non-patients I know who intrinsically trust their doctors (one is 82 and the other 62), is that their outcomes are good. And one of these guys (they’re both men) eats what I consider an obscene amount of a particularly sweet condiment. These two men generally have positive outlooks. (And I just discovered they also went to the same college, and they don’t know each other.) Reading tud and getting to know some stories and patient backgrounds and reading the amount of self-education people have engaged in, I can imagine that folks on here will be sorely disappointed interacting with the medical field. It seems that the right ‘fit’ is the exception and not the rule.
Bad IV sticks, multiple attempts, poor site selection (again, be patient!), sublimely uncurious practitioners (missed 2 chronic disease diagnoses), one practitioner who does very cursory blood tests, but compared to what I’ve read on here, I should not complain about blood tests. Still, in general, I am ok with my care, but apart from one or two instances, I have not really needed emergency care in adulthood.
I would not say that the medical field has failed me, but that is probably because I am such a maniac about monitoring things and … I hate mysteries.
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So far it has not. First I had a great doctor who diagnosed me as a t2
Second, I am a total control freak when it comes to my healthcare.
So I s usually show up with a long list and a directive what the doctor should do.
I do admit another doctor years ago diagnosed me with acute gangrene appendicitis when I thought i had a stomach virus. Glad I listened, though it took over a year to recover I did survive.
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My oldest, now 39, was born with a port wine stain. I was warned before the nurse brought her to me the first time that she had a birthmark. I expected a strawberry-like spot. Instead, it covered her right leg from waist to toes. I was assured it was nothing to worry about. Over the next few years she was seen by an orthopedist (the leg & foot with the mark were larger than the other), 2 more pediatricians & our family GP. They all said the same. I was a young, new mom worrying too much. She’s seen multiple drs over her lifetime, giving birth to 3 of my amazing grandkids. She developed varicose & spider veins by the time she was in 1st grade. No one shared my concerns. Three years ago, we almost lost her. A clot formed in what would have been a superficial vein in anyone else, where clots normally don’t form. It broke off & she ended up with multiple PEs in both lungs. 36 years to finally get a dx. KTS. Klippel-Trenaunay Syndrome. A somewhat rare birth defect. Every capillary & vein & the main artery are at least twice normal size in her leg. She now sees a cardiologist because it’s affecting her heart. The orthopedist says her hip joint is so damaged, he would guess her MRI is of an 80 year old. Some of this could’ve been prevented if she had been dxd as a child. Yes, I feel guilty, but also angry. I took her to the best providers in our area. They all failed her.
My middle daughter is 35. She had her first asthma attack at 2 months old. The pediatrician dxd bronchitis from a cold, but she showed no symptoms until she started gasping for breath. He refused to even consider asthma when I suggested it. She was too young. 3 pediatricians in 18 months. Lots of asthmatics in my family. I spent many nights in the recliner with her on my chest, just as I had seen my own mom do with my brother. She was finally dxd at 2. Our new family GP walked in & heard her breathing, & immediately knew what it was. Thankfully, as she’s grown older she has improved. No more ER visits, but all 3 of her kids have asthma as well.
If there was anything good to come from my experiences with my older daughters, it was me learning to advocate for my youngest. When I started worrying over signs of diabetes, I was the one who checked her BG (593) & called her
Dr to meet us at the ER. We avoided DKA. When the ped endo patted my shoulder & told me I worried too much because she was gaining weight rapidly, skipping monthly periods, & developing horrible cystic acne at 13, I didn’t argue. He believed we just needed to see the dietician. Clearly she was sneaking food or we didn’t know how to feed her properly. Two days later I took her to my primary. We discussed PCOS & tests were ordered. Yes, I was a worried mom, but I also knew my own child better than any medical provider. And unfortunately I was right. She also has adenomyosis.
When I noticed a few familiar symptoms, I sent my youngest back to my primary for a thyroid workup. She has Hashimoto’s, although she’s still swinging between hypo & hyper.
Nothing makes me angrier than someone thinking I’m dumb when it comes to my own kids, even now that all 3 are adults. Thankfully, my primary knows enough of my history & experiences that she respects my judgement now. We have a great rapport, & I have final say in my own diabetes treatment, as well as my multiple autoimmune disorders. I desperately wish the same for my youngest.
And just for the record, if it seems I’m hard on medical providers, it’s because I am. I have a family full of them. At one point years ago I was headed into nursing. I’m much better suited for accounting.
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I wouldn’t call them failures, but the medical system has let me down more than once. One let down was accepting 2 1/2 hr post prandial BGs to and above 180 for years. I was on oral meds at the time and HbA1C was around 6.2. Result is PN and retinopathy.
The two times when costs drove near failures were both over test strips. The first was a mass formulary switch to inferior test strips. Strips wouldn’t even take up blood. Docs set me up with good strips prescribed for T1s and I trashed a 3 month supply of the others. The second time was a botched mass roll out of daily limitation on strips. One ignorant pharmacy officer told me my only option was buy extras myself. I qualified for at least two exceptions on forms, but it took weeks to get Rx for needed amount because approval authority for exceptions wasn’t specified.
Repeatedly denying a month of CGM coverage for my daughter was also a failure.
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First, being Dx’d with T2 at age 30 (obviously only using the age criteria - and it was long enough ago that the types were Juvenile, adult and gestational). Granted I didn’t know anything about D myself, nor did I know anyone with it, and there was no internet. I had recently retired as a ballet dancer (working weight was 110 lbs for my 5’6" body). I went to the doctor because of the peeing symptoms, and the fact I was down to 98 lbs. After that appt, there was nothing about coming back for any further testing. It took a neighbor finding me in a coma to get the correct Dx.
At first, I got scolded while in ICU by the residents during rounds.for not taking care of myself - the assumption was that I had juvenile, but since I was 30, I obviously hadn’t taken care of myself. Luckily the attending Endo had read my chart - all of it. He asked the “tour group” to look at the chart. was there any history of T2 there? when was my date of Dx? Then lectured them on the fact that 1) diabetes of any type (except for gestational of course) can occur at any age and 2) read the damn chart. Loved that Endo
After moving to a city about 1,000 miles away I had to get a new Endo. Because I am very disciplined (hey, ballet dancer ya know?) and anal retentive numbers oriented, once I got the correct Dx I ran with it. My A1C’s had been in the mid-5’s for many years.The first Endo I saw said it was (and I quote) "…impossible for someone like me to have such good labs. Why are there no meal boluses (maybe cuz if I wasn’t hungry I didn’t eat?). I think this disservice is due to the attitude of many HCP’s that all PWD’s have two co-morbidities: Stupid and Lazy.
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How about being undiagnosed for many years? even after a fasting bg test that came back higher than established limits at the time. Some doctors need to lose their licenses due to ineptness and/or apathy.
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What tests diagnosed u as type 1?
@anon73308259 my Dr used C Peptide, GAD 65 Auto Antibody, Islet Cell Antibody tests to make the determination.
This spells out the different tests, but the 2 most common are C-Peptide and GAD.
Misdiagnosis failed me. I ended up with complications on dx because the two years leading up to being dxd I was dismissed by ER doctors on three separate occasions as bulimic hypochondriac when I complained of intense nausea, dizziness/weakness and debilitating leg cramps. Once admitted in DKA every nurse during my 2-week stay in acute care asked me how it was possible I had not known I was diabetic. I guess it was stupid of me that I never diagnosed myself but I knew nothing about the disease. I found out when I woke up in the ER and one of my IV bags said ‘insulin’ on its tag. Now I have a severe case of not trusting medical professionals and I hate appointments. I have no questions for them and I feel there is nothing they have to offer. My pharmacist has prescribing authority so I really would prefer never to see a doctor again.
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I had to look for another endo because the doctor just got really lazy and kept telling me gastro or liver or something didn’t make sense.
The new one has Ordered fasting panel and one of the tests is insulin and c-peptide., gastric and comp met panel. Also thyroid peroxidase antibodies. my T3 and T4 are ok
I ended up in the ER many times this year and have not been able to get it done.
They did some tests and I have things like ketones in urine, low electrolytes and co2.
Couple months ago I had high lactic acid.
There are other highs and lows.
I’m going to my PCP tomorrow and ask what do these results mean?
Thanks for the information