Endo Frustrations

Type 1 and LADA
1

My endo Doc Mike is a nice guy. But here's what happened when I saw him today.

Walked in.
Doc: Hi, how are you? You're looking great. How's your baby? [this is my first visit in about 10 weeks, I had a baby 9 weeks ago]
Me: Baby's fine. Growing well. She's gained nearly 3 kg now.
Doc: Don't let her get too fat.
Me: I'm exclusively breastfeeding her. She should be fine!

He looks at my results (thryoid, CBC, HBA1C). Quite a few high and low flags (high monocytes, low MCV, MCHb) the CBC, but he didn't seem to notice them and didn't comment. Maybe not important?

Am a bit hyper at the moment, with readjusting post baby, and quite a lot of weight loss. He feels my thyroid and notes that I've a tremor. Tells me to reduce my thyroid meds a bit. No problem, I will.

Then he asks if I'm still taking insulin. I tell him yes. He doesn't ask any details, but tells me that I should now stop taking insulin and stop monitoring blood sugar. "It won't hurt, because you're not pregnant any more. In 6 - 8 weeks I should do an OGTT and HBA1C to see if you still need meds and if the diabetes is going to be long term".

So I told him that I get 160 - 170+ post meal (if it's got significant carbs and no insulin bolus, and that is with basal on board), and my fasting is low 100s if I don't take insulin at night. And even if I don't eat my blood sugar will rise slowly all day. He kind of shrugged and didn't answer.

Asked me how long I intend to breastfeed and told me to be careful with breastfeeding becuase my prolactin could be high and the prolactinoma may grow. Watch out for double vision, headaches, etc. Well I've been having headaches, but I pressume that is stress and didn't mention it. Vision is fine.

Asked me how old I am now. Said 41. He said we'll have to get me ready for the 3rd baby soon, a boy! Seeing I have 2 girls now, and partner still wants a son.

I told him I'm still having joint pains [I had texted him about this a few weeks ago]. But he didn't hear me and didn't say anything.

No BP measurement, no weight checking, no asking any details about insulin doses and blood sugars, not listening to me .....

Am I wrong to be expecting something else? Why doesn't he believe I am diabetic? I don't think stopping everything for the next 2 months to see if I am diabetic is necessarily wise. When I expressed doubts and asked him further, he told me I have to stop insulin for "at least a week before doing an OGTT, to be safe". I can only assume that means to be sure the insulin won't affect the results....

Am I wrong? Should I follow his advice? This would most likely mean few months of high sugars to prove a point? And eat like a non-diabetic? Can one do much damage in 2 months? I can't beleive this is apparently one of the top guys in Philippines.

Really may be time to find a new Dr. I just need someone impartial to listen to me, to explain, to guide me a little, and encourage efforts if the going seems tough , and do all the general overseeing and monitoring and checking that one should have with long term chronic conditions. Am sure this is not easy to find. :( :( :(

2

Frightening this man is a top endo. I'd run, not walk, from a doctor who's providing nothing you list that you need. What possible rationale could there be for stopping insulin with 160-170 pp & fasting in the low 100's? You know well that's not healthy & do you want to burn out beta cells by experimenting with your body for a couple of months, especially with a baby? An endo who instructs to stop testing & shrugs his shoulders at your concerns? His recommendation is to put head in sand & come back in a few months.

What's a thyroid tremor? Not heard that one before.

3

I think many of us have dealt with these sorts of endo problems. It really sounds like your endo has rediagnosed you wants to treat you as a T2. I thought you had put this behind you, been specifically diagnosed as T1 and that this was not an issue, but apparently not. I would be hesitant to follow the advice of a doctor that suggested that a T1 should stop insulin in order to do testing and prepare to have another baby. That just seems whacked. Perhaps it is time to get a second opinion. Although your second opinion may not "trump" this "top endo" it will be easier having a second opinion backing up any further discussion you have on this issue.

4

Can you provide a cite or link for:

"Historically we've been taught that fasting blood sugars should be around 90 and post-meal numbers should be below 140 for non-diabetics, but more recent studies have shown that this isn't always the case."

Thanks,

Maurie

5

If you're going to go off insulin and not have him check blood sugar for two months, and you're worried that your blood sugar will keep going up and up, I suggest checking the blood sugar once a day or every other day and if two readings in a row are over 200, call it off (and call the endo). I would not be worried about after meal numbers like 160, especially because home meters can easily read high, and also, if they are consistently that high for real, it will show up in the A1c, and it won't cause short term problems. I don't suggest eating in a way that makes you feel bad or that you know causes dramatic highs.

I often have readings like those be off and don't have the endo talk to me about them because they aren't a big deal.

If you have an endo who you feel "doesn't hear you," then even iif his medical advice is sound it might be time to look for somebody else.

6

Hi Sally,

He certainly isn't listening to you & know how you feel on that front.

Can't say anything about food cravings & breastfeeding, but that seems plausible. You may very well need more breastfeeding & corresponding basal to handle this. Imagine the hormonal changes having a baby would cause fluctuations in BG also. I believe listening to our bodies & being attuned to our changing needs.

Hope the GP is the one for you. Please keep us posted. You've done an excellent job managing BG while pregnant & sure you can continue to.

7

Remember, just because somebody is a "top endo" doesn't mean they are a good doctor nor are they a good doctor for you. You may recall my experience with my last endo. I chose that endo because he was a "top endo," he helped write the AACE diabetes guidelines and was prominent, published and well thought of. Unfortunately, non of that contributed to him being a good doctor. That was my mistake.

8

But you can also find a good doctor. Maybe not one who is some top endo, but one who is reasonably competent, a good listener and someone who you can work with.

9

No kidding Gerri, I’m with you on this. I’ve been diabetic 32 years and had my share of morons for doctors… I’d run from this nut faster than an atheist from a church service.
Eric

10

If only we could have doctors submit a detailed application before we became patients. "Please complete the following questions & include three references from current patients."

1 Like
11

I agree about the "top doctor" thing; if anything it might give them a bigger ego. What I look for in a doctor is knowledge (of course)but also openness, compassion and the ability to listen and be flexible. A few years ago I thought I had a different medical condition (which ended up being a false alarm) and was moving to a new area, so needed a new doctor. I called a doctor's office and asked if I could speak to the doctor. I then got her on the phone and asked her about experience with that condition, but also how she feels about my reading (on the internet) about the condition and discussing things I'd learned. She said "I like having educated patients" and I of course said, great, make me an appointment please. In the mental health field it's customary to give a free first session to see if the "fit" is right for both parties. I think the same should be true for medical professionals. Well, alright, you may have to pay for it, and they may not be willing like mine was to talk on the phone first, but I still would ask similar questions at a first appointment with the eye to "interviewing" the doctor and seeing if they are right for you.

12

This is a must do...I have done much research and then 'interviewed' my own docs whenever I move. Finding one who can treat our diabetes does not require a top dog endo. My doc is an IM doc and sees to my whole health.

13

Good for you, Sally. I'm glad you found someone you're comfortable with. I know many people have good experience with endos, but there is something to be said for a PCP for sure. Sometimes I think the personality and attitude towards patients is a more important factor in a medical professional than their certificates and even their knowledge!

14

I agree that a good PCP can be a key member of your medical team. It sounds like you may have found a good one Sally. I found a new PCP about 2 years ago and it makes all the difference in the world.

My endo develops my D treatment plan but my PCP does a great job of overseeing all my test results and giving me his opinion on what the other docs are telling me. Nice to have a sounding board or built in second opinion.

15

Very encouraging! The fact he spent this much time with you is promising.

I go to an internist because there are only three endos in my area. They're over booked, spend 5 minutes with patients & are arrogant jackasses.

16

Good news! Happy your comfortable with your decisions & feeling better.

Other than anti-inflammatories, what have he & the rheumatologist suggested for reactive arthritis? Has the joint pain been worse with higher BG? An infection is the usual suspect.

17

Sounds great. Of course, to be expected that he'd relay the mainstream approach--watch the lows (do they ever warn as strongly about highs?), caution about protein & be concerned about saturated fat. Wonderful that he has an open mind & listened. I'm envious. Doctors in the US never spend the time yours do.