Primary Physicans

Type 1 and LADA
#1

I don't want to generalize here but, do all Primary Physicans know little to nothing about T1???

I had to wait 2 hrs in the waiting room for my appointment because she was running late. In the mean time I had a mild low of 61. When she walked into the exam room I told her that my brain was a little foggy because of it. Well, I honestly believe she still thinks I'm a type 2 (I was misdiagnosed by HER and I was sick like a dog back then. Obviously DKA but, I was clueless back then). Just by the questions she was asking me I could tell she didn't know what she was talking about. Plus she calls me a "brittle diabetic" because my sugar dropped low. So, I'm thinking (while having a foggy brain), do I explain to her even if she's a doctor and should already know this, that it's normal for type 1's to go low. Especially with exercise? So, yeah...I did tell her something but, I don't think she heard a word I said. OR, she ignored me.

Anyway, later we were talking about insurance and the cost of labs. I told her my previous Endo ordered labs that costed $1700 a pop. And she said, yes he ordered ANTIBODY tests and stuff like that. I said, YES because he was checking to see if I was type 1 and he found out that I am because I tested positive. Then she changed the subject.

Sorry about the rant! I just get furious when doctors think that I'm type 2 because of my age. I don't feel like I should have to explain this to DOCTORS.

#2

I totally understand, Sportster! I too was misdiagnosed as Type 2 due just to age and had to figure it all out by myself.

I think there may be PCP's who know more about Type 1, but as there are less of us (though more than originally thought - we are in fact 25% not 10% of diabetics when you count the misdiagnosed ones) I think most don't have enough type 1 patients to keep up. In fairness to PCP's there are so many different things they have to know about!

But having said that, I for one, prefer a doctor who doesn't know much about type 1 and acknowledges that fact. I seem to have good fortune in running into doctors who do just that either explicitly by saying "I don't have any other type 1 patients" or explicitly by letting me control my own D. I wouldn't tolerate what you describe above: ignorance combined with a closed mind.

Just to share, when I figured out I was really a Type 1 I sent an article to both my pcp at the time and the endo I saw once talking about LADA and misdiagnosis of older Type 1's. This was when I lived in Guatemala and I had shown the endo there Using Insulin by John Walsh. She asked if it was translated into Spanish to give her other patients. Unfortunately it isn't. Maybe that is a task someone bilingual can take on! But I felt comfortable sending them the article because they were open-minded and didn't take the stance of "I'm the doctor and always know it all, and if you tell me something new I'll pretend you didn't say it".

#3

My old PCP was pretty good about it, made good recommendations, seemed to either know or have done his homework and was instrumental in getting me more engaged with things. One time, BCBS was messing with me w/ BCBS claiming the doc didn't rx as many strips as I said he did so I called BCBS, called Walgreen's and then called the doc, out of the blue in the middle of the day, and the doc took the call so it went "I need the strips he prescribed" [BCBS]"how many does he prescribe" [doc] "how many do you need?" [me] "14/day like you said..." [doc] "14/day" [BCBS] "OK"

#4

geez! that last part is funny. sad also, that they will just accept the doc on the phone like that and NEED him to tell them directly what YOU need. shouldn't it be switched around??
dealing with insurance can sure suck.

#5

This seems to happen a lot. I always had great faith in my PCP because she referred me to an endo. When I showed up for a check up with an A1c of 5.5 (a percentage I was rightfully proud of), she dressed me down for it. She felt it was too low. And she made some suggestion about pulling back on my insulin. I was shocked at how she didn't have a handle on the minutiae of basal rates and carb ratios and not a little put out by the fact that my fantastic control over the last quarter had been too good. I had an appointment with my endo the next week so I told her that I'd discuss it with my endo with a distinct chill in my voice.

Is it possible to get a new doctor? Being unable to admit that she misdiagnosed you and avoiding that fact seems to indicate that this is not the relationship for you. It's very frustrating.

#6

PCPs all think they DO know about T1. But they haven't had the day to day experience than a T1 has had. Furthermore, because diabetes management has changed as it has due to meters and pumps, they have not kept up ENOUGH.
My belief is that an 8 hour education every two years for license renewal might help them. I want to give the education. I want to give them some simulation-Annies who they have to care for on their table at the education site. These Annies will wake up, have to be tested (with monitors of varying accuracy) and given some Lantus at the beginning of the day if they're on MDI or given a pump-set, given some exercise and food (with different I:C ratios,different sensitivities, etc., tested mid-morning, they will turn hypoglycemic and hyperglycemic throughout the day as they get their MDI or get their pump set and not-working-well, and the PCPs will have to show they can handle the continuing intolerable problems all day, have their brains intact as well as have a live Annie at the end of the day to get credit.

#7

Hi Zoe, I remember reading that you were ANOTHER misdiagnosed. It amazes me how many of us are out there.

I'm so glad to hear that you showed them the book "Using Insulin" by John Walsh. I've been wanting to do the same but, I wasn't sure if it was "appropriate" to so. I think I'm going to buy the book and give it to her next time I see her and hope she reads it.

I don't want to make her the bad guy here because I really do like her and, she's really not a closed-minded person. She doesn't have a problem with telling me she doesn't know something. But, sometimes I feel like I have to stand my ground and push back.

I remember the day I told her that my Endo ran tests and he said I was actually t1. I asked for the lab report because I had to see it in writing! One day she was writing either lab orders or prescriptions (can't remember which) and she wrote t2. When I questioned her why is she still writing that I'm a t2 she said because it will confuse the insurance company!!! LOL...WHAT???? If I hadn't said anything I wouldn't be on a pump right now because from what I hear it's hard to get a pump when you're type 2. So, now she writes DM and doesn't distinguish the type. BUT, my Endo does so I guess that's all that matters, right?

#8

Haha...Acidrock....And it was a simple as that?

#9

SF Pete, I would be proud of that percentage also!!!

My PCP referred me to an Endo also but, it was for an Over Active Thyroid. I was diagnosed the same day with both T1 and Hyper Thyroidism. She did say she didn't know anything about over active thyroids so, she does send her patients to Specialists when needed. When my Endo did the lab, I was the one that asked him to test for T1. AND, low and behold I'm t1. I believe I'm going to ask her point blank next time I see her.

#10

Leo - I like your idea about using simulators to challenge endos and other doctors about how hard it is to control diabetes with insulin. There are so many factors and most of the factors can change from day to day. Such an experience would hopefully teach medical practitioners a little humility and respect towards those of us that wrestle with this 24/7/365. I'd love to observe such a session!

#11

Leo2, that's a good idea!
Would you believe my current Endo told me that his nurse prac had to wear CGM for 3 days and he doesn't have diabetes. It was so he could learn how to use it. He said some of the students actually found out that they HAD diabetes from wearing it. Interesting huh?

#12

It was, that's why I got Walgreens on the call too, so I could go "OK, now that we're all on the same page, when will my prescription be ready..." in front of witnesses so they couldn't yutz around.

#13

I was shocked to recently learn that doctors in general medical school only get a single class that covers diabetes, and this class does so very generally with only a brief description of the difference in T1 and T2 diabetes. I have had so many medical professionals, including physicians, just make STUPID comments re: diabetes. Now, I have no problem with a doctor who is willing to let me educate him/her about T1 diabetes and how it is managed and dealt with. What I have NO TOLERANCE for is a doctor who acts like he/she is a "diabetes expert" when they clearly lack the knowledge to even know the difference between the various forms of the disease.

#14

These sorts of discussions make me realize how very lucky I am to have a PCP who is also an endo and who is an expert on diabetes care. In fact, he recommended a pump for me even though I'm a T2, and has been incredibly supportive in every way. I just wish I had found him even earlier than I did, so I wouldn't have had 10 years of probably being totally out of control.

But I really understand these frustrations, as unfortunately I've had other medical problems which have necessitated hospitalizations, surgeries, etc., and I have found that most other doctors seem to have little or no clue about diabetes, and especially no clue about pumps. I had an anesthesiologist tell me, just prior to my going in for surgery, that I would have to be responsible for monitoring my blood glucose during surgery...HUH? And this was in a major Boston teaching hospital! When I responded that, since I was going to be unconscious, I would be unable to test during the surgery, the nurse luckily stepped in and promised to test me halfway through (I'd been having problems with lows that day.) Another time a nurse tried to force me to take additional insulin when my bg was only 126 because she had heard that one had to treat diabetes if the number got to 126 or higher, but she had confused the fasting level of 126 for diagnostic purposes with the actual daily management protocols for people on insulin. Since I was on NPH at the time, my blood sugar would have crashed big time within an hour if I'd taken the insulin she was trying to force on me.

Honestly, sometimes the mind boggles at the lack of information and/or misinformation out there in the medical community.

Sportser, if you really liked your previous endo, you might want to ask him/her if he/she can be your PCP.

Ruth

#15

MyBustedPancreas, I was also shocked to hear that doctors don't get much training in diabetes.

#16

Ruth, hearing your story is very scarey and I've lately been terrified about if I have to go in for surgery. I've been hospitalized for DKA and they liked to kill me then! Can you imagine surgery?

#17

Oh, I forgot to answer your last question Ruth. I can't see my previous Endo because he was banned from practicing in our state for 2 years. He had an assistant that was not licensed to practice and he was also accused of ordering excessive and unnecessary tests.

#18

I had surgery (umbilical hernia...) and it was interesting, BG ran up beforehand (nerves?) so I had corrected when nurse tested @ 136, maybe thinking I'd eaten but I started blathering about DP and how I took a partial CB about 20 minutes before and I guess she figured I was ok. The surgeon, rx'ed by PCP, didn't seem too engaged w/ diabetes at all. "oh..." sort of reaction but knew my A1C was ok and that I was running the marathon 2 weeks before (MrsAcidRock said "you should get surgery then, when you're in shape!" and I agreed. The doc thought that was a good idea too...). The anesthesiologist said "oh, you have a pump? Aren't they great?" and that was about it. I would have thought it would have been interesting to watch the CGM but they didn't seem interested. The OR Nurse said "walk a lot, you will get better faster" so I did that, although the first couple of times it was *extremely* uncomfortable and I'm glad the dog didn't poop as I'd have been hard pressed to pick it up?

#19

Well, that was smart thinking!

#20

Live in a town that only has a couple primary care physicians. Nearest specialists of any kind are about 250 miles away. Wife is a nurse in the same town-- she knew right away exactly which doctor I should be seeing (and that he had raised a type 1 daughter). Only problem was, he was not a preferred provider on my insurance. I thought it might be worth asking my insurance if they could approve this particular doctor at the preferred provider rate. Was pleasantly surprised when they said yes. So far I'm happy with him. Looking forward to seeing an endocrinologist too though.