F BOMB at Endo's Office

Type 1 and LADA
1

This is kinda funny, (maybe?)...but just wanted to get maybe some feedback. I've had nothing but high blood sugars for weeks now. trying everything, never had numbers this high for so long with no relief. lowest numbers, with tons of novolog, hourly corrections sometimes, hovering around 160's (oh, will I ever see another double digit number again, 'sigh')...220's at bed, relentless. MY BASAL IS OFF, keeping trying to add, adjust (holding off on pump right now too). So, finally after another week of this, I called my Endo's office and he asked me to come in yesterday to try and partner through this. Ketones all week long too; no food, losing weight..feeling AWFUL..WHY WON'T MY BLOOD SUGARS COME DOWN, what have I done wrong..ugh, new vials, new insulin, more..no food, nothing working..help! ugh!

So, I get to his office yesterday, already fighting with another night of high BG's, tired, frustrated, pissed off with myself, he walks in and I start to cry...feeling drained and I start verbally throwing my numbers at him, my logs, hoping for his skilled, trained eyes to find the 'answer', "Did you see my meter, my numbers (he runs it every time)...i can't get my blood sugars to come down..look at this - look how MUCH insulin I'm taking, blah, blah, blah." He looks at me, first with compassion, concern then he says, "You're throwing SO much (insert F BOMB) data at me I'm not going to be able to just (F BOMB'ing) figure this out." I threw one back myself (ha!)...and we kind of ping ponged back and forth like this for a few minutes, he knew my frustrations, I could hear his too. Anyway, I was kind of shocked. I'm not a passive person but it kinda blew me away. He spent a lot of time, advised me, again, on how we're gonna work through this. Yeah..OK..but how would you feel about this?

2

I think I would feel like throwing a few F bombs myself. But I understand both sides of the frustration here, yours with your unrelenting high blood sugars and his with your deluge of information and tears. For me I guess it would affirm that he too is just a guy with a bit more schooling than I have and I would appreciate his willingness to team up and try to solve the problem. I don't expect a whole lot from my endo because there is no one who knows me better than I know myself and so much of how we treat ourselves is straight from self awareness. But fwiw my CDE is a much better source for problem solving than my endo. The endo is pretty much there to write the prescriptions for the insulin or pump or CGM, the CDE is the one who helps me use them effectively. Good luck I hope you can work through it I totally understand how frustrating it can be.

3

thanks, clare :). Yeah, our own special little 'job' to take care of this. yuck, fire me from this one, i'm failing..ha! he's voiced wanting to help me directly so I went with it, ya know. a part of me thinks I'm taking too much levemir and it's having a reverse effect..but, IDK, the beast keeps wanting to push my numbers higher and higher, something I haven't experienced since diagnosis..so I don't get it. Well, if I hear one more CDE tell me, "200's aren't dangerous, you need to eat more, start eating more, you're too thin." I'm like...yeah, 200's aren't gonna put me into DKA but they feel like s@it! (they haven't a clue sometimes)..and, NO, when I'm hovering around 190's fasting, with no clue as to how to get these numbers down, i'm not gonna dive into a plate of carb loaded food when an egg and coffee seem to push me over the edge right now..ugh! How is the POD working for you, do you still like it, glad you made the switch from MDI?

4

The Endo f-bombing would stop me in my tracks and I would just start cracking up laughing no matter how I felt. I have had Endos almost all my life and never heard one cuss. Sometimes cussing, especially hearing it from somebody that you thought doesn’t cuss, can either cause more stress, or release that stress.

5

Hey Sarah, still loving the pod although last night I had my first "occlusion alarm" and the pod just stopped delivering insulin and made a hell of a racket. But besides that it continues to amaze me with how steady and stable things are. I'm sorry you are still having these issues. My gut instinct is always to blame it on hormones and since insulin is a hormone I lump it in with the rest of them.

6

I know, right. He threw 2 in one sentence, straight faced, i caught them and threw one (maybe two) right back. but I was shocked. I left his office thinking, "I frickin hate this stupid disease." He probably left and thought, " I frickin' hate my job." HA!

7

Well, I wouldn't be happy about it, for sure, but when you look at the situation you described, your endo may have been overwhelmed by your challenge, plus his other patients, etc.

IMO, any appointment where you provide a data dump when you arrive is likely to be pretty worthless to both you and the endo. For this reason, I have kept my endo in Maryland even though I live in Florida. All the endos here just want data, data, data. My Maryland endo talks to me about MY issues, verifies that I am thinking about managing the disease in the right way, and checks me for complications.

FWIW, MDI had me questioning my sanity and made my meals a chore, a task that had to be accomplished whether I was hungry or not. Pumping has made so much more sense, even though it has its own challenges.

8

I would feel foolish! My docs have never played toss the F bomb with me, but I don't go in to my appointments with a flame thrower and start projecting fire at them. I think you are fortunate that your doc is compassionate, shows concern, and feels he can just return the fire. And after all that takes the time to offer you advice. Hopefully it is sound advice and things are improving. I hope you can get another appointment with him!

9

hum, i think you're missing the concept, i was coming from complete stress, not anger towards him at all and he knows me, we've worked together a long time, and asked me to come in. it was in my haste, frustration, feeling 'awful', etc....that I was supplying him with data, info, etc..hoping for some HELP - like, please can you help. not to accuse or confuse. Why wouldn't I get another appointment with him. think you've missed my point..certainly no flame throwing or projecting fire, for pete's sake...but, hey..thanks.

10

LOL - no I got the point, and was entertained by the visit, though I wouldn't call any of it "funny" really.

Now I am wondering if you are on the way to improvement and if his advice was helpful.

And you asked how would I feel...so I answered. But hey, you're welcome =/

11

I think sometimes the use of the F bomb can help relieve stress. I think as a doctor I'd be careful about what patient's I'd take this approach with. If I was a doctor I don't think I'd necessarily take that approach with a 75 year old. But someone in their 20's or a teenage patient, especially if there was some established relationship, I could see it might help defuse a stressful situation. I'd get a kick out of it personally, but then when you work with Dr's on a daily basis, you start seeing them on a more personal level too.

12

yeah, i'm a mature woman so he probably thought, 'what the heck'...he's very intense too and I think he just wants to try and 'help' and even said, another swear word..ha, "type 1 diabetes is so damn complicated, it's not YOUR fault." he refers to himself on a first name basis w/me as well as other doctors and his partner within the practice. But, I'm still high right now..though. Can't get below one.seventy.five...gonna hook up an IV of frickin novolog here soon. :)

13

Are you confident in your ISF, Sarah? Since you are doing this with shots so don't have mechanical issues and your corrections aren't bringing you down to goal, perhaps your ISF is off? Also, is there a chance you are incubating an infection of some sort?

14

Sarah - So sorry to read that you're still struggling. Endos have to realize that sometimes we T1s get completely worn down and emotionally distraught with managing this disease. Unfortunately, I've never had an endo that offered decent day-to-day BG management advice.

I even had one from a prestigious teaching university diabetes department try to help me. This doctor even corresponded with me via email over a few weeks to straighten things out. It did not work out well. At the root of my five year BG fiasco was insulin resistance that had built up slowly and totally upended consistent insulin action. The doc never got that. I know you probably don't suffer from insulin resistance, but you probably have some other fundamental metabolic problem that the endo just can't see.

What it taught me, in the end, as is that the typical endo does not have the time, energy, or even expertise to untangle a diabetes control mess. I know, they and we consider them "experts" but they can't compete with a well-informed and focused patient in the management game. I agree with Clare, you would be better off taking this BG control issue to a CDE or a diabetes nurse educator that has a track record of turning around people like. I would ask the endo if he can point you in the right direction. You need someone that will work with you every day (email and phone) until you're "out of the woods."

Don't you ever wish that you could go to a real life version of the TV series, "House," where some brilliant medical Skerlock Holmes types could just focus on your case and put you on the road to "T1 flatline heaven?"

15

thanks, was waiting for your insight, zoe (*smiles). Yes, well, everything is off if basal isn't working, so I'm taking ton of insulin with food and a ton of corrections. Can taking too much levemir during the day cause highs...for some reason I feel like I'm taking too much. Last night, 12am I turned over at my CGM and arrow was going straight up, 4 hours after I took my levemir. 12:15 pm today, i checked at 12pm I was finally (130), but then 15 minutes later, 4 hours after my levemir injection, when it kicks in I think, CGM showing arrows straight up and I'm going to 179, no food for at least 4 hours. I'm now again, 170's and I've already corrected twice and haven't eaten for 5+ hours. Isn't this basal, it's not holding my numbers down. Like you, maybe...I had one beta cell left and it's been maybe spitting out a drop or two of insulin for my .02 cpeptide level and now nothing. IDK! I was 200 again last night at bed. Can levemir just stop working, do I need more, am I taking too much, lantus, pump...help...ugh!

16

No, Levemir won't make your blood glucose go up. Yes, you probably aren't getting enough and also might try splitting dose for better coverage. But bottom line is it's hard to regulate basal with MDI. Not sure what your last sentence means..lol...and I forget why you went off the pump, but I highly recommend a pump to get basal regulated. Yes, unless you ate a high fat/high carb meal, if you are going high 5+ hours after food it is definitely the basal. If I'd had this "sudden onset DP" when I was on MDI I would have been SOL!

17

ah terry, thanks. I wish I had a 'norm' right now too. Ha. Maybe Gary, should I? I'm willing to pay out of pocket at this point and call tomorrow. It's getting worse not better, every day worse and makes me more nervous to try and do a pump start all over again too because I know down inside, no matter how much he's 'trying' to help, he's not because when I bring him the data (hurried as it may be, unintentionally) he doesn't have the bandwidth to do it.

18

OK. I do split doses, I'll add one unit for both AM and PM doses? I just don't get it. How can I go from starting on pump and having to cut back to .30 basal rate being so insulin sensitive, then back on injects and having to increase total levemir to almost 19 units, that doesn't calculate right - seems like I'm taking a whole lotta insulin. I am going to try the pump again. I just wanted to get some quick relief from injections, or so I thought, cause the whole pump thing takes a lot of adjusting too. I don't think I have a choice anymore. THANKS much.

19

I can definitely hear - and UNDERSTAND! your frustration. It does seem a big gap from .300 to 19 units. You do tend to have a reduction in total basal on the pump but not that much! But obviously something different is going on with you now. You definitely seem to be between a rock and a hard place because yes, starting on a pump is a definite learning curve which you don't want to do when you're so unstable AND a pump is the best tool to get you stable! Not sure what I'd do in your place; probably a little of both: work on getting a bit more stable while still on MDI then go on the pump and rework all the numbers from the start.

For now I would see if there is any pattern that suggests an uneven split of the basal, then increase where the most need is. Then if you are not entirely confident in your ISF I'd bump that up too and keep records on what works. Just, of course, keep track of your IOB when you correct so your frustration doesn't get you in trouble! (which is something else you will love the pump for when you get there!)

20

It is unacceptable for a professional to drop an f-bomb in that setting - always - unless you are friends. I have been with my primary care physician for 25 years, I call him by his first name and we talk very frankly with each other. We can drop f-bombs. It is completely acceptable for you to drop an f-bomb. It is not always productive, but productivity is only a portion of the purpose of the visit. There is an emotional component that is real - and should be recognized - and in this case, it took the form of an f-bomb. It is okay for a physician to feel the way s/he felt, it is not okay to express it in front of you.