FUDiabetes

Thank you, FUD, for being the Bad Bums you are (and for helping me to find my groove)


#1

I went to my endo this morning, and as I sat in her office, looking at all of the generic diabetes stuff plastered on the walls and coming through the TV, I thought about you guys.

I don’t have spectacular numbers to report. I’ve gained 6 pounds and my a1c has gone from a 5.8 to a 6.2, but I’m happy. I’m happy because I know what to do, and I know it better than my doctor. Not the general stuff. She can have that. I’m talking about my own numbers. I’m talking about specifics that I shouldn’t expect her to know (because how could she possibly?), yet I have always trusted she did. Today was different. Today I realized, because of what I have here, I am my own bridge to better control. I don’t need her for my numbers, I need her for my meds. I’ve grown. I guess that’s what I’m saying, and I just wanted to thank you all.

Things I heard in this appointment:

  1. About my 6 lb weight gain, she said it’s, “probably because you’re doing more insulin.” That’s what my dear endo said today. I was also told that 15 years ago. That’s incorrect. I’m glad I know it’s incorrect because what would be coming next is a subconscious plan to reduce insulin. I don’t need less insulin. I need to stop eating the crap that requires more of it. :smiley:

  2. In response to my request for a Levemir prescription, I was told, “no.” Why? Because I am going to like Tresiba more. I explained to her I’ve been using the Levemir, that I’ve worked out a really great schedule, and that I like it. She handed me a couple of samples and said, “you’ll like this more.” “Levemir doesn’t work,” she said and went on to talk studies about efficacy and the drastic improvement that has come with Tresiba. My numbers and my voice were lost in this. I don’t need the study to tell me what was working for me.

  3. About MDI, I don’t want you doing that. Let’s get you back on a pump.

  4. About IM injections… this question she managed just to dodge completely. I asked her whether or not she had any recommendations or guidelines and gave her a quick idea of what I’d be using it for, and in response she gave me a Correction Factor Sliding Scale to be used prior to meals. One unit for a BG of 120-150, 2 for 151-180, and so on up to 6 units for a BG of 271… It’s a cool trick, but now I know better. It’s a fish where you all are teaching me how to fish.

I’m not saying I wouldn’t ever need 6 units at a BG of 271, I’m not saying Tresiba isn’t better, I’m not saying a pump isn’t a more manageable strategy, (I AM saying insulin didn’t cause my weight gain, but anyway); I’m not arguing what’s best. I’m just thanking you guys for helping me become an independent thinker. Because it’s the Matrix out there, and I’m bustin’ free. :smiley:


#2

Oh goody! I was hoping for an update! Nice job! I am glad you are happy! Although, as I keep reading, I’m wondering why you are happy – clearly your endocrinologist doesn’t know she’s working for you. And she doesn’t know what is working for you! Because she doesn’t seem to be listening to you!

That my friend, that feels like wisdom. Knowing the difference is important.

And finally, I am sorry that you’re not being heard. Hopefully you walked out of there with a prescription for Levamir, a prescription for Triseba, and some faith from your medical provider that you know what you are doing and you have come a long way. I am proud of you.

EH had an almost identical visit with an endocrinologist who was doing maternity coverage for the endo we loved. Asked for Levamir, got rejected and given Triseba, asked for the Omnipod, got rejected and told he needed the minimed pump. That office got fired. Thanks to these guys here at FUD we knew that it was up to us! It is really nice to look back and realize we were right to walk away.


#3

Sorry… you said a lot of important things, but… run, don’t walk… :grin:


#4

Ask her how you use Tresiba if your nighttime and daytime basal rates are different!

Ask her how you use Tresiba if your basal requirements vary with exercise.

You do what you want. And we will help you with whatever you want to do.

I guess you didn’t tell her that you are using a pump…
:smiley:


#5

Hurray for you ! Great job, sounds like you kept your cool, and let her “put her foot in her mouth” objecting to your ideas.
At least my endo just raises his eyes, and says “that’s interesting”.


#6

@Nickyghaleb That is great! You described exactly where I like to steer my endos.

I know how to take care of MY disease better than you do, so don’t step on my toes. You, Dr., know more about the herd and studies, and academic subjects. Let’s put our knowledge together and make this work. But know that I have veto power.

I’ve only had one endo throw me out of his office. But that was better for both of us.

Keep learning!


#7

Congratulations @Nickyghaleb! True accomplishments! If we aren’t happy with the things that we do then we shouldn’t be doing them…that’s my motto. Glad you’ve found things that work for you and that are bringing happiness and hopefully less stress into your life.

We also had Liam’s Endo appointment yesterday and his A1C went up from 6.7 to 7.0. This was by design, though. I am “OK” with a slightly higher A1C to avoid the severe lows that we had been experiencing in the past. As a result, we brought his severe low percentage down to .6% (trying hard to get down to .4 or lower), and his ‘low’ percentage was only 2.6 (anything under 4% is considered great.)

Our endo actually kind of pissed me off when she said "With a Dexcom I need to see 0% “severe lows.” I looked at her and laughed. I said…so what you’re saying is that we need to do the following all the time…

  1. Be alert to all alarms 100% of the time - this includes when we have our kids monitoring his numbers as well
  2. He can never be sick
  3. He needs to stop growing so that his own internal hormones aren’t throwing his numbers out of wack
  4. We need to perfectly time 100% of his meals timing and insulin delivery
  5. The stars need to remain in perfect alignment at all times…

I shook my head at her and said…“That’s the dream…but I fear it’s just that until he gets older and is out of his hormonal stages.” She then said “Well, I have parents who are 0% severe lows.” To that, I said…and I quote…"bullshit. If there are parents who truly have 0% severe lows then I would love to meet them, pick their brains and they need to have books written about their accomplishments, because, for the rest of us, that’s just not “the real world.”

Now, can I have a great 90- day period where he maybe has 0% severe lows? Sure! But that will be the exception, not the rule.

Also, she was looking at my severe low percentage and indicated it was 1% and I had to inform her that this is not correct…the percentage shown on the Clarity website rounds up or down on the main page under “Time in Range”…I had to point her to the AGP page where you can see the ACTUAL percentages…when her staff ran that report she had to agree that we brought Liam’s severe lows down by nearly .3%.

Anyway, like you…we feel that we are at the point now where we are happy with the knowledge we have, the support system we have here (most of the time), and the really helpful people who make managing diabetes so much easier and less stressful.

Our goal for our next 90-days is to get Liam’s Severe Lows down to .4% (or lower) and to try and keep under 7%…would love to get that down to 6% but not willing to trade severe lows for a better A1C.

One other thing we discussed was that, she only wanted to discuss what Liam’s numbers were over the past 2 weeks and I told her that isn’t good for us at all. I want the whole picture looked at each time I come to visit…not only a small portion of it (which, btw, he had been sick for nearly 2 weeks up until last week so if she had only looked at the last 2 weeks she would have gotten a very narrow window into his management.) She said from now on she’d bring 90-day progress out when she talks to me.

One last thing I forgot to mention…she did have a resident Endocronologist with her and she told me that she’s introducing the new doctor to all of her “good patients who have really good control over their diabetes”…that felt great to hear.

Again, congratulations on your successes!


#8

This is the exact same conversation my doc and I had several years ago. I wanted levemir because I could use different doses 2x daily. He was saying no you don’t, you want tresiba because it’s flat. I was saying the whole point is I don’t want a flat basal. Wtf is wrong with this idiot? Finally I told him I wasn’t leaving without levemir. He gave me samples of both on the condition that I tried the tresiba first.

Have to admit he was right though… tresiba is awesome for me… has caused me to completely understand what my needs are in a different light and in a different context


#9

Presumably she isn’t aware that even non-diabetics don’t hit 0%. A “normal reference population” is Low (below 70) 5.2% of the time; Very Low (below 60) 2.1% of the time, or about 30 minutes each day; and Dangerously Low (below 50) 0.4%. So in fact Liam’s time in the severe low range looks pretty normal!


#10

I can pretty much guarantee she has many patients who have 0% severe low, that is because they never travel below 200. And their A1c is 12.

not really the ideal population to look at in my opinion. Congrats on maintaining your sons health. We know you are doing the right thing.


#11

@Nickyghaleb: I’m glad to hear your report, apart from the “doctor knows best” endo…it sounds like you are running the metaphorical prison, as described by @Eric!

I’ve maybe said it here before, but I am blessed have a very good, humble, and tolerant GP, and no endo at all. He prescribed basal and bolus therapy with Lantus and Humalog at my diagnosis, nearly 15 years ago. He prescribes my insulins and things I ask for during our visits, and doesn’t push stuff on me. Only thing is, my GP is probably a year or two away from retirement. However, his replacement will be a good friend of mine, who is a DO, and also a T1D. Presumably, I’ll be able to keep going as per the previous 10-12 years with no Endo.

My sentiments exactly, Chris.


#12

I don’t think that is always a true reflection of BG lows <50. I often treat when dexcom shows 70 going down (or have symptoms), and know by BG checks that it is well on its way up long before dexcom screen shows it. So dexcom might show 55, but meter doesn’t, and I don’t usually get any BG checks under 60.


#13

Rock on @Nickyghaleb! Glad you have found a balance and are happy.:blush:

Scary how most anyone who is proactive in their own care has more than a passing knowledge about their illnesses.


#14

OMG Nicky.

She is straight out of the 50s. You could make a horror movie out of her :slight_smile:

Hopefully never again!


#15

@Michel if you made a horror movie out of @Nickyghaleb, what character would she play?


#16

“I’ve only had one endo throw me out of his office. But that was better for both of us.”

Oh my gosh! Seriously? I’d love to hear that story! :slight_smile:


#17

I need ro print that paper out and give it to my GP. My GP gets worried about “low A1Cs”. I keep reassuring him but that paper is a good reference.

My endo has no problema with my A1C. That is probably because he looks at my 14 day average AGP chart which shows not a lot of lows.

I was at a conference last week eating too much food and sitting so there is a bit too much high on there right now… :grinning:


#18

Here is the source: you want Figure 3.


#19

I walk away from too many appointments feeling lost… sometimes demoralized and lost. Too many of those appointments have been with my endocrinologist. I was happy to be walking out of there already knowing what to do and where to go for help (read FUD).

About the fact I have an endocronologist who doesn’t listen— well, that’s a real problem. I didn’t realize I had that until my ideas were my own. My ideas, until recently, have been hers. :smiley: So, yes, now I have a problem. I also have a new standard by which to hold the next endo I interview, as @Eric says. A new year’s a-comin, and what a great time to set out on a journey to find an endo who is going to respect and cater to the things I prefer or to voice concern over the things which he or she does not agree by way of engaged debate/discussion. I’m past being handed a schedule and sliding scale and being told no when I have another idea.

:smiling_face_with_three_hearts:

I’m pretty proud of me, too. :smiley: You all are good people around here, and you’re doing good things. Not all that I do would exactly be evidence of that, but much of it is. The rest I promise not to post. :smiley:


#20

I didn’t know what I wanted, or even that that mattered, until stumbling in here. I’m never gonna be the same, @Eric. And my endos to come are gonna hate you guys for it. :smiley:

Oh, I threw that in. She just waved that away, in her single swoop of the hand, along with my request for Levemir prescription, accounts of joyous MDI use, and questions about IM technique. No time for that. There’s samples to be given, more patients to be seen, and golf dates to be attended. Plus, I’m all fixed. :smiley: