Another - Endo Visit - Should I try to find a new endo?

Diabetes and Pregnancy
1

Saw my endo today - nearly 30 weeks pregnant and insulin resistance is increasing..... but I'm managing ok.

Told him how much insulin I take: long and short acting. My latest A1C is 4.9, which is acceptable (and I'm working hard on it).

He told me I need to take more short acting becuase he likes to have his patients take their short and long acting with a ratio of about 2/3 long acting and 1/3 short acting. I replied that this would be difficult as I would go low / or I would have to eat way more than I'm eating. Then he told me "but your way of adjusting it based on what you eat and frequent testing is also ok".

Told him I adjust based on my results and if I'm high then I will correct. He replied that "usually his patients would just monitor and if they were consistently high over a period of days then they would increase their insulin dose".... I responded... well I don't want to be consistently high before I adjust....

This is so frustrating.... no wonder people here don't get good management..... I know of type 1s here who are still on mixed insulins.....

Then he said he's happy with my progress and everything looks fine.... asked me about the abdminal pain (I've had this since complicated appendicitis surgery)....So I told him about the abdominal paid. He said, "I think that's your hip". Me: it's in the wrong place to be hip, and I think it's adhesions, which they've seen from ultrasounds....

Then he asked me if I had any concerns... and didn't listen to my answers....

He'll see me in 1 month! When I am 34 weeks.... he wishes all his patients were like me.....

He is a nice guy... but I am so frustrated.... I feel like I have to do everything myself. But if I try to find a new doctor, I am also really scared of getting someone who won't work with me.... or who wants to manage my thyroid based on TSH only. If they did they'll take me off thyroid meds, put me on antithyroid meds - and kill me. Last time I tried to find an new endo (this was pre-diabetes) I was told to stop my thyroid meds based on TSH..... In those days my TSH did move up if I stopped meds.... these days it is consistently non-existant regardless of meds level... At least the current Endo knows this and we don't even measure TSH....

Actually I am so frustrated with all my doctors ... I feel like I have to completely self manage... My obe seems competent enough on the baby side but also seems intimidated by me.... heaven help if I weren't self managing all my conditions myself - I don't know if she'd have much input....

I don't know how much monitoring is appropriate - but I'm not getting much. Still only get to see my doctors every 4 weeks......

Maybe it is me... maybe I know to much and can't just be a dumb patient following orders.... but geez from what I've seen just following orders may be a way to get oneself killed..... or at least having complications in a short time.

And I'm not a "good" patient. I do question everything.... and ask why and research.... And I don't take meds unless I'm convinced..

2

Good for you! After seeing endos 4/year for that all important 15 minutes, I decided last March to do a trial separation. I did my A1c recently and I'm pretty aware of my BGs. I've been through three endos in 5 years and it makes me wonder if its just me. I don't think so. I just can't hack the lack of respect that a Dr. could infer in discussion.

I look at it like this. I've been living with this disease 24/7/365 for 28 years. I have over 245,000 hours with T1. And I've paid attention. That easily outpaces medical credentials.

I'll probably try to limit my appointments for one/year to renew my scripts. I would, of course, see the endo if any specific concern arose.

3

Good luck with the baby making! Your A1c is awesome.

4

My two cents is that you're doing fabulously & to continue what you're doing your way. We could all fill a book with doctor advice we haven't followed to our benefit. I smile & do what I know works. Not to say that I haven't argued with doctors because I have. Sometimes the lack of understanding gets to me. If I didn't need prescription refills & tests, I wouldn't even bother.

Sounds dicey to chance getting another endo. Perhaps easier to work around the current one since he's not interferring with your thyroid meds.

I envy you. Wish my doctor was intimidated by me:) I might get more of what I need. I'm not a ideal patient either. Sure "non-compliant" is stamped in red on my records. I also question everything. Recently had an argument about my thyroid treatment that had me steaming & in tears (not in the office).

Yep, you know too much & are a well informed patient. That's a decided advantage for your continued well-being. And, yes, it's very frustrating.

5

I hear you, Sally! Terrible that you have to tell your endo to check the basics. Also terrible that you self-diagnosed appendicitis! Still shaking my head that your doctor told you your pain was in your hip. Please go back to school & retake basic anatomy.

What's frightening are patients who don't have the background, interest or resources to do their own research. They turn their care to doctors who are too busy or ill informed to help & often cause grave harm. Pain in the tush to be doing the doctor's job for him/her. I resent. giving money & time to someone whom I have to train on what's necessary. Pitiful that we're forced into this position.

Glad you're using ERFA. Wonderful success with your doc on that front. Can I fly you to the US to talk some sense into my doctor? My situation is that I have high Reverse T3, which needs to be treated with high doses of T3 & the underlying cause also treated. My doctor didn't know how to interpret my labs & told me I was doing great. Huh, what? When I explained it all, he refused the other labs saying they were unnecessary & also refused higher doses of T3. He's not an endo, so it's out of his league. Been to the few endos in my area & they're incompetent..

6

From what it sounds like, you're doing great with what you've got and I don't think you should change a thing. You clearly know what your body needs and how to adjust things on your own. You are your own expert! If this endo is willing to prescribe you what you need to stay healthy, I say stay where you are.

The great thing about diabetes (if there is anything great about it), is that tools you need to manage it on your own are relatively easy to get. I mean, if you have insulin, a BG meter, and the ability to test your A1C periodically, there's not much more you need. It's a matter of just gaining access to those supplies and having the knowledge to use them appropriately.

I mean, an A1C of 4.9?? That's awesome.

7

The only reason I could think of to jack one's basal up to 66% from the "around 50..." would be if there's something w/ going on w/ junior to increase the basal need? A good friend of mine had type G and mentioned something to the effect that the baby would be ok and would just sacrifice the mom to it's (the baby's...) needs, in terms of BG. That's sort of like "apples and oranges" but if the "software" or "hardware" were still in place despite whatever shortcomings your pancreas has, perhaps the doctor means that your basal needs would "spike" as the baby gets bigger? Of course, the doctor probably has 1 patient doing as well as you are and is probably not used to anyone saying "what are you talking about? I need proof" or whatever.

My whole problem with doctors is that if you have a problem to communicate to them, it will take them 2-3 days to get back to you with a "plan" by which point I would usually have come up with at least a few plans myself so why bother? I would say stay on top of it very closely, maybe use the "sturm and drang" as an excuse to wheedle some more test strips out of them? Even if you don't totally need them, perhaps a few extra tests can help you stay on top of things?

8

It is hard to find a good doctor and establish a good relationship. There a far too few endos and they are often just overwhelmed by the number and complexity of all the people with diabetes. And treating diabetes is not like other stuff. Other stuff, you go to the doctor, he diagnoses and decides how to treat you and you are a passive participant. Not so with diabetes, you are the center of your ongoing diagnosis and treatment and sometimes doctors have trouble deferring that leadership role to their patient.

Your difficulties seem fairly mild. You are actually doing well. And your doctors request to move towards a basal/bolus ratio can be achieved without lows, you just need to follow a stricter low carb diet. You keep your basal the same, but reduce the carbs which reduces you bolus needs and blammo, you change the ratio. My ratio right now is about 75/25.

And your doctor may have some reasons to move you towards more basal. Maybe he want you to get your fasting numbers down a little lower (like 70 mg/dl) even if you go a little higher after meals. The growth of your baby after all is a steady process and spending more time with a normalized blood sugar may be better (remember, pregnant women normally have a lower fasting BS).

I hope you know how proud we all are of you.

9

I know that bg regulation standards are tighter for moms to be....

but your A1C of 4.9 is lower than 99% of diabetics. Maybe 99.9% of diabetics.

Assuming you're doing that without many hypos then not only is it "lower" it is "better". (Those aren't necessarily the same).

I've seen a lot of endos over the last third of a century, including really spectacularly good ones, and I don't know if any of them would offer useful advice on how to do better than you're doing.

Doing much more intensive control than a typical diabetic will put you at odds with the "typical" diabetic.

Your level of control is like Bill Gates's finances. I'm sure BillG asks financial "experts" for financial advice. That doesn't mean he always does what the experts say other guys typically do. Your situation is very analogous. If your doc offers you advice and you feel you're working at a higher level already, don't take that as a sign of a problem. BillG and others have that "problem" in spades, and if your "problem" is too much money or too good bg control, that's not really a problem at all!

I think you or your doc confused a correction bolus with a genuine change in standard dosage in the conversation. It's pretty obvious that if your A1C is as low as it is, you are working on it very very hard and must be doing correction boluses.

Tim.

10

Wow, that is a high dose. Happy you're doing so well with great T3 & T4 numbers. Being hypothyroid while pregnant is no fun, especially with GD.

The way my doctor reacted to RT3 testing, you'd think it wasn't available in the US either:)

Just love that he assumed it was your hip without asking or examining. Good skills.

11

i just posted something to this effect a week or so ago.."what the heck is the role of an endocrinologist"? it's true, WE do all the work. I was doing the same thing, having to ask for regular tests that he should know to follow up on, feet, 3 month A1C check, labs, eyes...it's like..some don't even ask..what the h!ll do they even do anyway?

But, you're pregnant and should, as you say, be partnering with your docs. They're so overpaid, IMO...all they really do is write Scripts...!

12

To put some perspective on your doc issues 1) my GP has no imagination and won't do anything unless I ask. (to be fair, my endo is fantastic) 2)hopefully this is short-term until you have your baby and 3) an A1C of 4.9 is incredible :) and your doc wants to improve upon it. Wow!