Beyond frustrated

I wanted to recap my Endo appointment from today, but I don’t even know where to start. This was by far THE most frustrated I’ve ever been after any kind of doctor’s appointment.

My appointment was at 10:15am. I arrive at 10am and sign in. Fast forward to 11am and I’m still sitting in the waiting room, waiting to be called back. So I go up to the counter to ask how much longer (I’m using my lunch break for the appointment.) She tells me he’s running about 45 min behind, but she calls back (to where, I’m not sure) and then tells me that they’re on their way to come get me. (And if I hadn’t asked, would they have been on their way?)

About 10 minutes later, the nurse does come get me. I smile and ask if he’s running super late. She chuckles and says he usually runs about 45 min late, and sometimes it’s a 2 hour wait. (2 hours????)

So we get into the room and she saddles up to computer to ask me a laundry list of questions. How many times do you test your blood sugar a day? What was your fasting blood sugar today? Are you still on the insulin pump? Are you still on x,y,z medications?

The longer I sit there, the more brave I get, I suppose, because I chose that moment to mention that my bg’s have been running high– and that I’d called and left FOUR messages, and 1 email, with no return call/email. Asked her what should be my expectations for getting called back. She looked at the monitor and said “We only show you’ve called once.” Here we go. I assured her I’d called four times, and told her I could tell her the dates if she needed me to. She said “I don’t suppose it would matter at this point, since you’re here now.” By this point, I was wishing she’d already checked my blood pressure because I was sure it was starting to rise.

She asked me if I needed any refills on Rx’s – I told her that my insurance is no longer covering Humalog, so I would need a new Rx for Novolog (not happy about that, btw.) Nurse #2 then pokes her head in the door to tell me that they’ll do my blood work in the room after the dr is finished, to make sure I didn’t leave.

Nurse #1 leaves, and a few minutes later the dr comes. His turn to saddle up to the computer. Clicks here and there, types some things, has yet to speak to me or make eye contact. Then finally says, “Hmm. How are you feeling, Shannon?” I say “Well not great. Overall, fine, but I’m pretty frustrated about how high my blood sugars have been getting, for no apparent reason.”

He .. no lie …. tells me, “Well, I think since you’re overweight (which I am not overweight – could I stand to lose a few lbs? Yes, but I do not consider myself overweight) … I’d like to start you on a new medicine. It’s an off label Rx for Type 1s, and it’s mostly used by Type 2s, but I think it’ll help you lose weight, since you’re overweight, and I’ll have the nurse bring you some samples to start on, then she’ll get you the information to get it filled at the pharmacy.” (btw, the drug he’s wanting me to take is Farxiga – has any other T1s taken that? -just curious)

I didn’t know what to say. I’m not here to talk about my weight, jerk .. I’m here to talk about my blood sugars. And the fact nobody here returns calls apparently.

But wait, there’s more.

I bring up the unreturned calls. No response/acknowledgement. Just stares at the computer screen. I mention that in 2 of my messages I’d left, I had said I wanted to take a break from the pump for a couple of days to rule that out – but I needed his help with getting started back on shots, and I’d need an Rx for Lantus. He says “I always have my patients have Lantus on hand, in case their pumps ever malfunction.” I assured him that I have not an Rx for Lantus in over 8 years.

Then he went back to explaining the drug that he mentioned earlier, and how he thinks it’ll work well for me – you know, to lose weight, since I’m overweight.

I mention to him that I’m going to have to switch from Humalog to Novolog, and asked if there was anything I need to be concerned about – I know there is a difference in the tail. I’d had to switch once before in my 3rd trimester with the twins. He said they’re exactly the same, just a different manufacturer. *sigh*

Then he examines my feet. And in the middle of that, stands up and says he needs to ask his nurse about my Rx, and leaves the room.

And doesn’t come back!!! He goes into a patient’s room across the hall.

Wait, were we finished? I wasn’t. I had other questions for him. But never got the chance to ask.

Then nurse #2 comes in and says to grab my stuff, so we can go to the lab. Takes me into the lab, and the lab tech had NO personality. After she draws the blood, I asked her if they still email the results – told her last time they emailed it the next day (and Nurse #2 drew it herself last time, in the exam room). She said “I don’t know. I only draw the blood.”

After she draws the blood, she hands me a label and says it’s for my urine sample. I ask her where’s the bathroom, and are there cups IN the bathroom? She says “turn left, and it’s 2 doors down.” Left from this chair, or left from the main hallway? (valid question) She repeats “turn left, and it’s 2 doors down.” So I flipped an imaginary coin in my head, and went back to the main hallway and turned left. Sure enough, there it was… 2 doors down.

By the time I walked to my car, I was shaking. I didn’t know if it was because I’d gotten so frustrated, or if my bg was low. Probably both. I was 58, so I sat in my car and drank a juice box. Once I was ok again, I drove to pickup lunch then back to work.

But seriously. I am not going to PAY a doctor to make me leave feeling so incredibly dismissed and unimportant. Not to mention overweight. Let’s not forget that one.

So even though I just went through this last year, I’m back to Endo Shopping again. *sigh*

About Shannon

I am a wife, a mommy, and a Type 1 diabetic (since '92.) I have had two successful pregnancies - one of which was with twins. I wear an insulin pump- - off and on for 17 years; currently on the Medtronic pump and CGM. I am not a medical professional, nor am I giving medical advice. I am just sharing my day to day stories of someone who lives with this disease every day. My ultimate goal is to raise awareness.
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18 Responses to Beyond frustrated

  1. Scott E says:

    Endo shopping sucks. But sticking with this guy sucks more. I suggest that if you made a follow-up appointment, that you cancel it ASAP. (My suspicion is that the personality-less people at the front desk won’t even care).

    This office sounds like they operate from a script, much like pretty much any customer-service line. If they have a scripted answer that is anything close to your concern, they recite it; otherwise they ignore the concern altogether.

    Please, please, PLEASE get a recommendation– From a local T1 (if you know of any); from the DOC, from a pump-company rep, someone! You can’t pick a name in the phone book and hope it works out; you’ve already had your bad experience. (I forget, how did you end up with this guy again?)

    And for God’s sake… don’t fill that Farxiga prescription! I know nothing about it (never heard of it, actually), but I already don’t trust the guy who’s pushing it. All I know is that he’s got free samples, hence he’s heard the sales-pitch. (He’s also pushing an off-label use, which doesn’t feel right considering his apparent lack of knowledge or concern for details). But I fear if I Google it I’ll find something bad. You don’t need something to help you lose weight, and you don’t need advice from a guy who doesn’t have a clue about what you need.

    You’ve set foot in that office for the last time. You hold all the power now.

    I’m so sorry to hear you went through this (especially since I pushed you to dump your last endo. I’m sorry about that!)

    • Shannon says:

      Scott – it’s funny that you said that about canceling my follow-up appt. I did make the appt and as we were picking the date, I wasn’t even concerned about the date itself because I knew I wouldn’t be coming back. I was just still in shock, I guess, so I went ahead and made it as I was checking out – and handing over my copay. But I’ll definitely be canceling it.

      And I’m also not going to take the Farxiga. He mentioned it being “off label for Type 1’s” several times. But he was so fixated on the weight – that was his only concern. I did receive a recommendation on FB from another T1 friend that I may try. He has his own practice (which I prefer), he answers his own calls on the weekends, and he wears a Dex even though he’s not T1, so he can know what his patients are experiencing. And he asks questions. And takes notes. And is current on technology/research. And my friend drives from across town to see him. He also helped her manage her diabetes with her recent pregnancy – and we all know that my last Endo did not do that.

      And as far as how I found this guy – he’s with a very large Endo practice in the area. And the 2 female dr’s that I initially requested in the practice that I’d heard recommendations for, neither were taking new patients. 😦 He was the only one that had an available appt in the foreseeable future when I made my first appt last July, and I was starting to run low on my Rx’s from leaving the last Endo…. so that’s how that happened. I was excited about going to that practice because they have CDE’s on staff and I hadn’t seen a CDE in about 20 yrs. And I did like her. But she also did not return my calls/email, so it’s time to move on.

      • Scott E says:

        I’ve been in that scenario when scheduling appointments before. “You want me to come in at 11:30pm on December 31? Suuureee….go ahead and write me in.” I know I won’t make it.

  2. Shannon says:

    Oh, and something else that happened.. The nurse asked me, “Are you taking your cholesterol medicine twice a day like he’d recommended last time you were here? ” I said, “No, I do not recall him saying take it 2x/day. He did up the mg the last time, and I picked up the Rx and have been taking that, but I believe it says only take once/day. She looks at the computer screen some more, and says “No, the notes here say to increase mg and also take it 2x/day.” So then I was getting concerned that I’d been taking the incorrect dosage for 3-4 mos. But I got home and checked… label on the bottle says once a day. Sheesh!

  3. Megan Druien says:

    Wow Shannon I am so sorry you are having such a hard time finding an Endo worth a darn. It took me 6 Endos in 12 years to find a good one who acted like a real human being. I have no idea where in the country you are located so if you live near Illinois or Iowa let me know, my Endo from Dubuque Iowa is awesome. I have had similar experiences and I too was so mad I was shaking and then went low, adrenaline always makes me go low.

  4. StephenS says:

    Shannon, there’s definitely a disconnect here on all levels. Once you find a good endo, if you’re brave enough, I would suggest sending a note to this practice (especially the head of the practice, if it’s not this doctor) and let them know all of this, and why you’ve moved on.

    Regardless, it sounds like you’re doing everything right, and as always, if we could get our pancreases to cooperate, everything would be just dandy. Good luck with the search… Thanks!

  5. lwiguest says:

    Well, I have to say that I have the BEST Endo there is….well of course that’s in my opinion. She is a nurse practitioner and is also a T1 on a pump. She is really awesome and love her. We always work as a team in each of my visits. Plus we always exchange info on stuff. I remember YEARS ago when my previous Endo retired and a new one took his place in the office. Now, that’s a story to tell. I hated her, as she demanded you do this and that to control your diabetes. Listen here lady, I don’t work that way. We work as a team or not at all, so she lied to folks to get me kicked out and never seen again by any doctors in that medical group….even my PCP. It’s really amazing sometimes about doctors…truthfully good ones that really care are hard to come by anymore these days. And that must be a new thing with insurance as I’m having to switch as well from Humalog to Novalog now because of insurance. Which is another pet-peeve of mine.

  6. Frustrated NJ/Philly Type 1 says:

    I am a Type 1 pump user in the NJ/Philly market and have yet to find a good, informed, compasionate Endo. I worked in the diabetes pump industry for 5 years and still can’t find one. I hope all medical specialists aren’t as far removed from their patients as Endo’s are…

    • Scott E says:

      When I lived in the area and had a serious overnight hypo, the ambulance took me to Frankford-Torresdale Hospital in Northeast Philly, where I was put under the care of Dr. Nagelberg. Very nice guy, slow-talking, compassionate, helpful. I switched to him as my regular endo for several years until I moved out of the area. If you’re in that area, I’d recommend that you give him a try. (he also had an office on City Line Avenue in, I think, Bala Cynwyd). Of course, this was over ten years ago…

  7. kelly2k says:

    Shannon – I am so sorry you had to deal with so much crap! NOBODY deserves or should be treated like you were and it makes my blood boil!
    I’m glad that you’re Endo shopping – please keep us posted on your progress!
    Also: YOU ROCK.

  8. bennetdunlap says:

    First. Sucks that they care more about screens than you.

    Second Careful of a SGLT2 and type 1 – maybe seek more medical advice before taking one. Dr Peters gave a talk on off label drugs and type 1 at FFL last year. She cautioned that the class of drugs work rapidly in T1s and that she recommends a CGM AND being ready to reduce insulin right away because they lower BG QUICKLY. They may lower bg to hypos because the SGLT2 removes sugar through the urinary tract and you may have active insulin on board.

    She does have people on it and on CGM but it sounded far from a casual pop a few of these bad boys.

    There are I think there are at lease 3 different SGLT2 drugs on the market. None are on label for T1.

    Wishing you much success, starting with some respect from a care team.

  9. Pingback: Back on track | No More Shots for Shannon

  10. Pingback: And we have a winner! | No More Shots for Shannon

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