SUPER discouraged post-endo appointment

[bkh]

Actually, my internist is very good for normal-body issues. A few years ago I had a rash on my forehead with small vesicles, so I went in for a diagnosis. The nurse looked at me with wide eyes and said “Do you know what that looks like?!!” (The answer is shingles, and yes, that’s why I went for diagnosis.) The internist looked at the rash, but he also noticed some scratches on my arm. He asked if I had pain (no.) He asked “have you been working in the woods? (Yes.)” After a few more questions his diagnosis was poison ivy, and he explained the differential diagnosis that led him to that conclusion. I was favorably impressed.

[jbowler]

This is just my story.

Way back when I moved to Oregon my PCP felt I should see an endo, I went to see said endo and I had a reaction that I won’t quote here because it would certainly get this post deleted. So I stuck with my PCP, in the manner of @3cTim and others, until said PCP said something to the effect, “I’m sending you to an endo unless you get your HbA1c lower.” Then I worked really hard to lower my HbA1c, and he kept treating me.

For me 99.9recurring% of having a doctor is being able to talk to that doctor and having her or him understand. So I really can’t say whether what any doc said is “right” or “wrong” but what others have said is true - endos have to deal with a whole load of people, T1s, people with LADA, MODY, are a minute fraction of that population.

Another thing my PCP said to me (alas he too has retired) is that he wasn’t going to tell me what to do because I had far more up close experience (around 40 years at the time) with my insulin problems that he did (IRC he had about 10 years at that point).

I will say one thing that has struck me as important while reading both tudiabetes and fudiabetes; too many people are mis-diagnosed or simply not diagnosed. First step, work out what is wrong, second step, work out how to fix it. Reverse these steps and, from the doctors point of view, it works most of the time. Leeches, excellent treatment, cures almost everything.

[Marie]

I beg to differ @ClaudnDaye you could have zero lows…if you aimed for an average Bg level of 200 I bet

It is outstanding still how unknowledgeable medical personal can be. I saw a NP about a year ago and had mentioned I was trying to figure out snorkeling and keeping my numbers even keel and she said can’t I prepare better the night before…I was actually too flabbergasted to respond.

[bostrav59]

It’s a truism in the US health care system: You are your own best advocate. Corollary to that: no one is going to advocate for you.

@amusesbouche - as you can tell from all the posts above everyone has different experiences with Endos. My advice fwiw: if you don’t like this person, change. Nothing that they will do will make you like them once you feel the way you do. They have an approach and they are going to stick with it, and while that approach may appeal to some, it doesn’t appeal to you.

I am extremely fortunate that I live in Boston, which has the Joslin Clinic that specializes in diabetes care. Of course, however, when I was first diagnosed with diabetes, no one at Cambridge City Hospital, where I had my PCP, my endo, my diabetes nurse, suggested that I go there. It was only thanks to a colleague at work who knew about the Clinic that I found out about it. It’s not been a problem to go there but none of my care team ever thought about it.

And the standards of care and level of knowledge between my PCP and Endo at Cambridge City and the Joslin are incomparable. My original Endo didn’t know whether I was type 1 or type 2 (because I acquired type 1 at age 50) so he had me on insulin and metformin. He prescribed me these super long pen needles when I just needed small ones.

I get to Joslin and they look at me and say - you’re type 1, no need to stay on metformin. They gave me mini-needles for my insulin pen. They pushed me to get a pump, and for 7 years, every 6 months, I sat down for a review with my Joslin Endo, Greeshma Shetty. (She’s left Joslin, so now I am with another guy Giulio Romeo).

All of which is to say that treatments and knowledge vary considerably. Find someone who has an approach that supports your goals.

my 2 c

[ClaudnDaye]

@bostrav59

All of which is to say that treatments and knowledge vary considerably. Find someone who has an approach that supports your goals.

This, percent.

[amusesbouche]

@amusesbouche

Thoughts? Thanks in advance for your support. It is weird how I feel even more alone and lost following an appointment like this…still new on this journey and it is really, really, really hard.

To all of you,

Thank you all SO much for your extremely thoughtful responses. I decided to take a day or two to just cool off and try not to let it dominate my mind for a little while, and after reading all of your feedback, I definitely feel somewhat encouraged. It helped A LOT to read differing viewpoints, as everyone had a different two cents, and to understand contrasting perspectives from people who have been dealing with this disease in and out every single day for years, often decades. I feel utterly grateful that FUD exists and there are such generous people willing to share encouragement for nothing other than the hope that someone else feels reassured. It literally brings tears to my eyes as I type this! Thank you

[amusesbouche]

@Karl.n

There is no one right way to skin the diabetic cat

Hope it’s OK that I plan to steal this phrase

[amusesbouche]

@3cTim

I guess 2 things come to mind, wait until the next appointment and after that see if you feel the same, or start looking for someone new , one dr does not fit all

Thank you for the levelheaded advice—I think I am going to do this.

[amusesbouche]

@MM2

Did you discuss A1C or target BGs that are YOUR GOALS? If so, how did he respond ?

I did not and I think that was a mistake. I think I do want tighter control over my A1c and time in range than perhaps the average middle-aged American (I turn 40 in a month…I decided I can confidently now call myself middle-aged ). I should have discussed this with him, and I think I will make a note to talk to him about it at our next appointment, which is in a month. Thanks for the great suggestion.

[amusesbouche]

Thank you so much for sharing this perspective, @TiaG—it is so helpful on many levels. It helps to hear from someone who can help me to imagine where maybe my doc is coming from. It also is really useful to understand the kind of real-life experience that I don’t have being relatively new to this disease (e.g. perfecting basal only to see things getting out of whack a few months later, and the reality that “perfect” settings might only be static for a limited period of time).

@TiaG

Anyways, our current endocrinologist is not much help with settings, but she is very supportive in other ways, so we like her.

Curious to know: in what other respects is your endo supportive and helpful? (seriously, I am still trying to figure out what an endo really is good for! )

[amusesbouche]

@TomH , The questions you mentioned are good ones. He is excellently trained (Dartmouth, St. Louis Medical School, Dartmouth residency, UCLA fellowship, 10+ years experience after that), and I like that he seems to come from somewhat of a similar background as me (we are a similar age, probably would run in similar circles, and he appears to be the same ethnicity as me). But his practice is much more diverse than some of the endos mentioned here, as he does thyroid FNA biopsies, etc. He is most definitely not diabetic. I am starting to wonder if that might be the key to finding a great doc – there is simply no replacement for understanding what a diabetic goes through every hour of every day.

Definitely trying to take in all the advice here before considering next steps. If there is anything that this thread has made me realize, it’s that no matter who you consult with as an endo or CDE or nutritionist or GP, your diabetes journey is your journey alone, and no one can or will walk it for you. You’re on your own for that, so you might as well trust yourself.

Thank you so much for your encouragement on this discussion thread as well as the other one!

[amusesbouche]

@Chris

Over the years of learning as far as diabetes is concerned, I would say that as long as the endo is somewhat supportive, keeps on top of the prescriptions and doesn’t tell you that your experimentation is stupid I think you are doing ok.

This is a useful perspective in helping me reconsider my (admittedly high) expectations of my doctor, so thank you. I hadn’t been looking at him as someone who primarily writes scripts, but rather as someone who could sit down and look at my granular numbers and tell me what to fix. Maybe that was the wrong way to look at it altogether.

[amusesbouche]

@jim26

Anyway finding a good diabetes doctor can be difficult, so don’t be too discouraged. It’s pretty much par for the road.

This is oddly reassuring.

[amusesbouche]

Thanks for sharing, @MarkP - Curious to know, how long did it take you to get a sense of what works and a routine, and to go from one flat basal rate to a more nuanced scheduled like the one above?

[ClaudnDaye]

@amusesbouche

I hadn’t been looking at him as someone who primarily writes scripts, but rather as someone who could sit down and look at my granular numbers and tell me what to fix. Maybe that was the wrong way to look at it altogether.

This is absolutely the right way to look at it for now. Eventually, we all (well not everyone, but most of us) get enough experience and education that we cut the dependency cord and find ourselves asking fewer and fewer questions at the granular level because we understand things for ourselves better as time passes.

Once you figure out what works for you, how to correctly dial in your own settings, etc, more than likely, the Endo will be more or less your conduit to the lifesaving meds you need (writing the scripts).

Some people never seek to understand things for themselves and have little understanding of their disease, but i don’t think any of those people are in FUD. We want to live (or help our kids live) “unlimited” lives and to do that we constantly grow, learn and try to get as close to a functioning pancreas as we can.

[amusesbouche]

@Marie - thank you; this was beyond helpful.

Part of the challenge of my appointment the other day was that my diagnosis is still not clear. When I first saw this endo a year ago, he told me my situation indicated I was probably a T2 or possibly had a mild case of MODY. But then I asked him about it again this time around, and he said I may actually be T1. Either way, his message has been pretty consistent, which is that it’s not always obvious what the diagnosis is, and that we shouldn’t be too hung up on what the official cause was, because the way it is treated should be the focus. Obviously, I can understand this, but it’s also hard for me psychologically to not put this in a box. I feel there are different public perceptions of T1 vs T2 and that is something that gets in my head at times, too.

@Marie

I think from the doctors view, if they have to manage your diabetes, it’s easier for them if things are simple…one basal rate, up or down. One dose for each carb that seems to work while never getting close to a low. Because frankly that’s just easier for them, less time consuming.

@Marie

My second endo was a type 1 herself. She stayed up on all the latest. My current endo wore a Libre and saw the fluctuation in accuracy and BG levels in a “normal”. When I said I was having issues with going high when I snorkeled she told me she was told strength training helped from another patient. When I asked for Baqsimi, she warned me that people had told her they got a headache when they used it. I asked for Afrezza and she learned what she had to set up to get it for me, she hadn’t had another patient yet ask for it

I am starting to think that maybe the key to finding the right endo for me in the long run is to find someone who actually has diabetes. There’s a good chance I will relo to Houston, TX in the near future (I am currently in San Francisco) and in that event I’ll have a chance to see if I can find a referral that better fits what I’m looking for.

@Marie

But I would never stand for a doctor that says I shouldn’t do something that works for me or tries to say you have to do it his way.

Thankfully, he was not like this at all. There is nothing worse than a doctor’s appointment that feels like a power struggle. He did respect what changes I had made; I just was surprised by his approach to settings and his suggestions for changes.

@Marie

I think from the doctors view, if they have to manage your diabetes, it’s easier for them if things are simple…one basal rate, up or down. One dose for each carb that seems to work while never getting close to a low. Because frankly that’s just easier for them, less time consuming.

Of all the things you mentioned, I keep thinking about this thought the most. It’s a bit of a depressing way to consider things, but also so realistic that I can’t help but wonder if that’s what it really was. I don’t think he’s a doctor who doesn’t care, but perhaps realistically, with all of the patients a hospital practice has to manage these days, it’s one way for the doctor to manage his workload.

[ClaudnDaye]

Our Endos were perfectly happy to have our son in the 200s and 300s all day long. I think it’s all about what’s easiest for them, add you mentioned, as well as liability removal of hypos if you ride high all the time. They don’t seem to care about the LONG TERM diseases and issues that result from staying hyperglycemic all the time.

[amusesbouche]

@ClaudnDaye

You are educating yourself and once you have a solid foundation of knowledge it really is your own journey. All input is welcome but you want to get to the point (imo) where you KNOW what you are doing, why you are doing it and you can argue your position and rationale too anyone challenging it. They can disagree but that won’t impact you in your informed and educated decisions.

That’s how we do it anyway. Endo writes scripts and keeps an eye on any symptoms of long term diabetes damage (neuropathy, retinopathy, etc)

This was a totally different approach than what I had been taking which, in retrospect, seems a little unrealistic (expectations of how much the endo could help were too high) and a bit naive (obviously nobody is going to care about your problems the way you care going to care about them). It’s a really helpful way of recalibrating what I expect from my care team, so thank you for the perspective.

@ClaudnDaye

I turn to FUD because I honestly trust them more. And for us, FUDs opinions and guidance have made managing Liam’s diabetes very easy and manageable.

I really look forward to this. Thank you so much for creating a community for people like me to feel less alone. I cannot thank you and @Chris and @TiaG and @Michel (and anybody else I left out) enough.

[amusesbouche]

@bkh - thank you so, so much for sharing this perspective. All of Thursday and most of Friday I was reeling from the idea that maybe I had put myself in the wrong hands for care and that my doctor (who I quite liked as a person, as he seems like an empathetic, thoughtful clinician) actually did not truly care about bettering my health and well-being at all.

@bkh

I read your post yesterday, and my first impression was that your endo is an imbecile to say outrageous things like basal rates don’t matter and pre-bolus is unimportant.

But after thinking a while, I think perhaps your endo is a good doctor who decided that treating your comfort right now is more important than stressing over details of your dosing technique.

First of all, in reading your post, I just have to say how touched I was. I cannot believe a total stranger would give this so much thoughtful consideration.

Second, this paradigm was tremendously helpful in considering a possible scenario in which my doc actually did try to have my best interests in mind. I like to think that what you suggested is possibly what actually happened. Maybe it’s because I always want to imagine the best in people.

Thank you from the bottom of my heart for your thoughtful response. It was more reassuring than you could possibly know.

[amusesbouche]

@Jan

I go to FUD for most questions. They are the ones with all the experience.

My new plan from now on!