SUPER discouraged post-endo appointment

[amusesbouche]

These are really helpful ways of looking at this!

@TiaG

At any given time in any given day, you just need a certain amount of insulin to keep your blood sugar in range. That insulin can come from “basal” programming or from a bolus, but to your body, they are indistinguishable.

@ClaudnDaye

And it blurs even more if you pump / loop and ONLY use fast-acting insulin for both purposes.

After doing so much technical reading it is easy to forget this simple principle

@TiaG

Anyways, the point is that your endo’s approach might be a perfectly valid one – remember he has the benefit of seeing hundreds of patients and noticing trends --like if patients with aggressive basal testing tend to do better or not. If he is opposed to you trying a different one, that’s not ideal, but if he just said in an offhand way that basal rates don’t tend to matter much, he might not be wrong…

Rather a good point, and it is humbling to remember this!

[amusesbouche]

OH MY GAWD to these stories!!!

[amusesbouche]

It reminds me of the time my immunologist diagnosed a new allergy! In so many respects, doctors are really detectives…

[Mariethm]

@amusesbouche
Not sure if anyone has mentioned this, but if they haven’t, there are endos that specialize in diabetes. From my experience, there is a huge difference between general endos and diabetes endos. My first one basically had no idea what she was doing, and I had the feeling she was just googling stuff. That set me off on the completely wrong foot!
So, I would see if you can find one that only deals with diabetics, when you relocate.
Anyway, best of luck! Take some time searching through posts here when you have questions; you’d be amazed how many answers/approaches you’ll find!

[amusesbouche]

Thank you for sharing, and for opening my eyes to the fact that tudiabetes exists as well! Clearly, I’m still learning

[amusesbouche]

Thank you for this.

@bostrav59

Corollary to that: no one is going to advocate for you.

THIS was my number one takeaway from this discussion thread. A bit of a hard pill to swallow, but now that I’ve swallowed it and recalibrated my expectations for care, I oddly feel somewhat better!

[amusesbouche]

I did not realize this until this thread and as they say… The More You Know™

I absolutely will do this if/when I relo! Thank you

[amusesbouche]

Thanks for this.

@ClaudnDaye

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.

Amen! We all have a sense of purpose and a calling…at least until that cure comes in 5 years

[Marie]

@amusesbouche

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.

We all need to go down the path that works for us. This is a disease we can’t walk away from. But we can ease the burden of how much work it takes. It makes a huge difference from my point of view of the right diagnosis. First with insurance…insurance will easily cover more tech for a type 1 than a type 2. Second, when you are a type 1 a different understanding comes into play. That your body can not cope without having insulin…not even can it cope a little bit, except for the initial honeymoon time diagnosed as a type 1. A type 2 makes insulin, but just doesn’t use it well, and because of that there is a difference in treatment.

From my experience, when I learned that I was a type 1, quite a few things changed in my mindset. One that skipping a dose and eating something really good for me, i still needed insulin. The other thing that became pertinent…is the high rate of insulin per carb I was taking. All those highs during the day I was told to increase my insulin, which in turn made me eat more when I crashed. I’m pretty sure I became insulin resistant for a while there. And that’s usually not a type 1 problem. But it was a matter of timing and adjusting what I actually needed, not just more insulin. Treatment is different.

I had to change all that “mistreatment” of being a type 2 and think along the lines of a type 1. I have really good control now and it’s because of the forums I dug in and learned.

[MarkP]

Even now, it still evolves for various reasons, but in general I’d go with a slight adjustment every time I noticed something that could be improved, and even the small adjustments (.05-.1 units/hr) an hour before a high number or a drop would end up smoothing things out more than expected

But it’s an ongoing process

[TiaG]

Hello! We’re in San Francisco. There are TONS of good endocrinologists here so there is no reason to settle for someone who is not a good fit. Please message me if you want any help.

In general I would say that it’s tougher getting a good adult endocrinologist to manage something that is more like T1. They are so used to T2s, which have simpler medical management. But that doesn’t mean you should settle.

This is also a bit more of a red flag – the fact that he is not willing to figure out if you have T1, MODY or T2 tells me he’s not really interested in getting the best treatment for you. You are getting a bunch of blood tests anyways, how hard it is to add the MODY panel, the 5 T1 antibody tests, etc., to one of those blood draws?

Diagnosis does matter honestly. For instance, a MODY patient could take drugs to spur insulin production and may need zero insulin. A T2 will almost certainly benefit from additional drugs like metformin ozempic or SGLT-2 inhibitors etc. And a T1 will often have more difficulty managing blood sugar levels than a T2 who is insulin dependent.

[TiaG]

Well, she keeps on top of whether our son develops other autoimmune diseases with yearly blood tests, checks to make sure he’s not developing lipohypertrophy, makes sure all of our diabetes supplies/orders are very promptly filled, is happy to help us try new technology, and can suggest things like psychologists/psychiatrists who are specialists in T1-related distress.
Usually at our appointments she goes over our settings and makes one or two changes. Those may or may not work. Sometimes the helpfulness is not in the specific changes, but simply being a person who lets me talk through and crystallize trends I may not have actively articulated.

And sometimes she will gently suggest alternate ways of thinking about things, without forcing me to change anything, until I am ready to try it. For instance, I was very focused on trying basal changes until about a year ago with Loop, which is a DIY automated insulin delivery system. She had been suggesting to me for a year or more that it was a little bit complicated to troubleshoot and that because of its algorithm, the ISF was probably a bigger factor. But she never insisted on decreasing the number of segments we had.

And similarly, I had been expressing frustration with unexplained highs when we switched to the Omnipod for Loop – she never said “you need to change systems” but just told us that she had seen some people who developed issues with insulin delivery with Omnipod on the specific body part we were using, and that she’d seen that kids of my son’s age/insulin usage tended to do better in her practice on the Tslim Control-IQ algorithm than on Loop.

[TomH]

@bkh You make good points about the possible intentions of the doc as well as how youdeal with your situation. I like a doc that meets me half way: listens to my questions/statements, offers his/her perspective and information, and understands we’re partners in the effort but most of the time I get 1.1 votes to his/her 1.0. Hopefully we understand and respect each other, but If it comes to an impasse we can part ways.

[SFLADA]

In my experience…
I feel it is of utmost importance to ask yourself if this is someone you Want to work with. Think of the first appt as more of an interview. Is this a care giver that you want on your team, one of your crew members? Is this person threatened by your knowledge? They might have all the credentials but you live with insulin dependent diabetes 24/7. Use your wisdom to decide. You’ll make the choice that’s the one for you.
Cheers

[amusesbouche]

@SFLADA Good way to look at it! Thanks.

[amusesbouche]

@TomH

and understands we’re partners in the effort but most of the time I get 1.1 votes to his/her 1.0

This! Such a good way of phrasing it.

[amusesbouche]

@TiaG

Sometimes the helpfulness is not in the specific changes, but simply being a person who lets me talk through and crystallize trends I may not have actively articulated.

This is a really good thing for me to remember.

[amusesbouche]

I will say that I like that my doc is very much up on the latest technology, and extremely responsive (usually responds to messages within the day or even faster). It’s clear that he is thoughtful in his answers, but that being said, I have thought about what you wrote below for the past day…and I think it makes a very excellent point.

@TiaG

This is also a bit more of a red flag – the fact that he is not willing to figure out if you have T1, MODY or T2 tells me he’s not really interested in getting the best treatment for you. You are getting a bunch of blood tests anyways, how hard it is to add the MODY panel, the 5 T1 antibody tests, etc., to one of those blood draws?

Diagnosis does matter honestly. For instance, a MODY patient could take drugs to spur insulin production and may need zero insulin. A T2 will almost certainly benefit from additional drugs like metformin ozempic or SGLT-2 inhibitors etc. And a T1 will often have more difficulty managing blood sugar levels than a T2 who is insulin dependent.

I think I’m going to message him and gently press him on the question of getting more tests at this point because I do think these considerations are more than legitimate. Currently trying to think of how to word it in a way that doesn’t come across as disrespectful or critical of his medical advice, but that also makes it clear that I am going to advocate like hell for the best healthcare I can get because it’s my quality of life we’re talking about.

That being said, I will also message you about SF endos…thank you so much for the offer. <3

[3cTim]

many insurance plans want to know as well, and cover type one and 2 differently so it is always a legitimate question, and you can tell him they want to know

[Marie]

If he gets upset then maybe it will give you the information you need to decide whether to keep him or not?

Just be polite and say.

“I really really want to know if I am a Type 1 or a Type 2. Could you please request the antibody test and a C-peptide test so I can find out? It also might make a difference in future treatment plans.
Thanks so much”

I would also include listing the tests you want. You can add
“These are the tests I understand are needed?”

• C-Peptide
• Insulin Autoantibodies (IAA)
• Insulinoma-Associated-2 Autoantibodies (IA-2A)
• Zinc Transporter 8 (ZnT8Ab)
• Islet Cell Cytoplasmic Autoantibodies (ICA)
• Glutamic Acid Decarboxylase Autoantibodies (GADA or Anti-GAD)

or

• C-Peptide
  While most tests check for antibodies, this test measures how much C-peptide is in a person’s blood. Peptide levels typically mirror insulin levels in the body. Low levels of C-peptide and insulin can point to T1D.
• Insulin Autoantibodies (IAA)
  This tests looks for the antibodies targeting insulin.
• Insulinoma-Associated-2 Autoantibodies (IA-2A)
  This test looks for antibodies mounted against a specific enzyme in beta cells. Both the IA-2A and GADA tests are common T1D antibody tests.
• Zinc Transporter 8 (ZnT8Ab)
  This test looks at antibodies targeting an enzyme that is specific to beta cells.
• Islet Cell Cytoplasmic Autoantibodies (ICA)
  Islet cells are clusters of cells in the pancreas that produce hormones, including insulin. This test identifies a type of islet cell antibodies present in up to 80 percent of people with T1D.
• Glutamic Acid Decarboxylase Autoantibodies (GADA or Anti-GAD)
  This test looks for antibodies built against a specific enzyme in the insulin-producing pancreatic beta cells.