I had a horrible doctor visit today, need to vent!

Type 1 and LADA
1

Went in for my 3 month visit at the diabetes clinic and it did not go well in my opinion. This is very, very long, and I am sorry, but I am so frustrated and need to rant. If anybody has any input, I would love to read it.

I saw a nurse educator and a Nurse practitioner. I told them about the extreme low I had a few days ago. Explained that about a month ago I started noticing low morning fasting numbers in the 70-80 range, which indicates to me that I need to go down on the basal insulin. I started going down slowly every couple of days and ended up at about 50 units per day. Also on Victoza 1.8 nightly. That pretty much fixed the morning lows. I have been having extreme hunger for the past month or so, along with headaches and being shaky all the time and very tired. So last Friday at 5 a.m. I wake up from sleep knowing something is WRONG. I check my BS, and it is 58. I make it to the kitchen and drink something and eat some peanut butter. Sugars came back up, but the whole experience wore me out for 3 days.

As far as insulin went, since I had that low Friday morning, I drastically cut the insulin to 30 Friday, 35 on Saturday, and 40 on Sunday and Monday. I also cut the Victoza to 1.2.

So this is how the visit went. When the NP came in, I asked if I would be seeing the doctor, and she said that no, I would be seeing her today. I explained the whole episode since a month ago and how it knocked me for a loop. She said the only reason I was hungry was because I had decreased the Victoza dosage. She did not pick up on the fact that I was having severe hunger problems way before I cut the Victoza dosage. She ultimately decided to have me stay with the 40 units of Lantus and bump up the Victoza back to 1.8. We decided on the dosages for my meds, I would journal my food intake, etc. and email those in to her next week.

So I make the mistake of making a comment that I have been doing some reading about the insulin pump, mainly because the doctor in that clinic had mentioned it to me as an option if I ever wanted to consider it. She flat out says to me, “You don’t meet the criteria for a pump.” Huh? The doctor mentions it to me last year, but this chick says I don’t meet the criteria? She never explains what the “criteria” are though.

Then, I asked her with this trending downward of my fasting BS, does this mean my pancreas decided to kick it in gear and work a little for me? She got really nasty and said, “Your pancreas works just fine. You are NOT a type 1. You are insulin resistant. You are a type 2. You do not meet the criteria for type 1”. So I tell her first of all, I never said I was a type 1, but I do feel that I “meet the criteria” for having characteristics of both types. And further, could she please show me where in the chart it shows her that my pancreas is functioning normally since no tests had EVER been done on me? So she starts rattling off all the tests that they “could do”, C-peptide, etc., but that they don’t need to do them because they “know” I am a type 2. I said to her that it just boggles my mind that a doctor would not want to have those results, if for no other reason than to have a baseline for future reference. I also told her about my father being a type 1, my grandmother being a type 1, all of my aunts and uncles having it, my mother having an autoimmune disease, etc. So she just stares at me a minute and says that would be like a doctor doing an MRI on every single patient that walks in the door “just because”. I have to tell you, I literally felt my face turning beet red and my blood pressure going through the roof when she said that.

I have never been so insulted in my life. I am done with these people. Please tell me, am I crazy for just wanting some blood work done so that I can know what is going on in my body? I don’t “want to be a type 1”, it’s not like I am hoping for it. Good Lord, I don’t even “want to” be a type 2. I want it to go away!

So she refused to order any tests on me and that was that. I decided not to force the issue because I could see that she was not intelligent enough to have a conversation with.

So now I am shopping for an endocrinologist. BTW, the doctors in this clinic are internal medicine doctors, not endos. They specialize in the treatment of diabetes though. Not that it matters, since I did not actually see a doctor today, nor did I see one three months ago.

2

Hi Sparkysmom: I am so sorry for what you went through. Sadly, I am not surprised, but I am sorry. With your very strong family history of Type 1 diabetes, you should get the appropriate tests. And furthermore they are not expensive. If I were you, I would shop for an endo and a center that will do the right thing for you.

3

No, you are not crazy for wanting the tests done. A “good” doctor will run the c-peptide regardless of whether or not there is any question of type for the very reason you stated – to get a baseline of where you are now. Even Type 2s can lose insulin production and they would need to alter their treatment options as that loss occurs. A good doctor would understand that.

Being an internist specializing in diabetes doesn’t really mean they get it. I am sure a lot of us have been to endos that don’t get it – I know I have been to a bunch.

Is the doctor you said your cousin went to too far for you to get to? (that is a lot of 2s!). I live in a small town and have to travel a couple hours to see decent doctors and it is worth it. If I had not done that when my foot was infected, I wouldn’t have my leg today – the bozo here stopped antibiotics when both a culture & MRI showed that I still had an infection. Your life is worth the trip!

If I recall correctly, you switched from your family doctor to these people? Maybe that doctor might not know all the ends & outs, but do you think that he would at least order those tests for you?

Have you ordered Think Like a Pancreas or Using Insulin? You might be able to get some good tips from one of those books. I know those lows aren’t any fun!

4

Kelly, yes I did switch from my family doctor to this clinic, mainly because it was a new clinic in town and I had read an article about it and was intrigued that it was a specialty clinic. My doctor, a good old fashioned family practice doctor, was supportive of the idea and sent me on with her blessings.

I am calling my regular doctor today to go in and have her run the C-peptide test for me. I know she will do it, especially when I tell her about my experience. Frankly, she could have done a better job taking care of me that this clinic.

My cousin lives about 3 hours away and I am in the capital city, so you would THINK that we have the best places to go, LOL. I just called the endocrinology department at the University of Mississippi Medical Center, and they have a wait time until next year for new patients. There are other doctors here, but I think at this point my best bet would be to do to my GP and have her run the tests. That way, I will know my numbers and can have a good baseline. I would be thrilled if it came back with a pancreas that is producing normally. It sure would put my mind at ease to have the tests run.

5

I am working on that today, Melitta. I feel pretty safe that I won’t have any more scary lows since I reduced the Lantus, so at least that fear has been reduced. I am starting to feel better, so I am going to go to my GP and have her run the tests. She will do it for me.

6

I guess it depends on how big the capital city is! I live in PA and lived around the Harrisburg area (the capital) for about 20 years. Doctors were better there than where I live now but I think they are better in Pittsburgh or Philadelphia. I travel about 3 hours to get to Pittsburgh.

At least you have the family doctor to help you out. I know a lot of people say you should see an endo because you are diabetic, but if you have a good PCP, you don’t need one. I really have not had a good endo in 27 ½ years. As long as I have a good PCP that will listen to my needs and I can keep up with stuff online, I can go in and ask for what I would like to try. That works better than people like you experienced today that think they know everything!

7

I like her a lot because she listens to me and she is very intuitive. She knows that just looking at a piece of paper with lab values is really only part of the puzzle. She is in her late 50s so I hope she is around for awhile or can at least point me in the right direction soon. Thank you for your input and support, it really means a lot!

8

She sounds like a keeper! Hopefully you will get the answers that you are looking for. Not to throw another loop into this for you, but there was a guy on another message board that it took about 4 years for his antibodies to show up. His c-peptide kept declining along the way and the antibodies finally made an appearance. I don’t know how common that is, but just know that it is possible if your stuff comes back negative. Like I told you before, follow your gut - you know when something is not right.

9

I’m angry on your behalf, sparkysmom. I’ve been to doctors who admit where the limits in their knowledge lie and I much prefer that to doctors who act indignant when you ask an intelligent question. That “I’m the doctor/authority/god” crap would send me quickly out the door. It sounds like you like your PCP and she listens to you. I just see a PCP and he writes my scripts and that works just fine. But you first need to have your questions answered. Don’t forget antibody testing which is even more definitive than c-peptide.

I laughed when I read you’re “I don’t want to be type 1” comment. I first figured out something was wrong when the oral meds stopped working at 15 months and my blood sugar kept climbing. I spent a lot of time here and elsewhere online learning about LADA. When I finally went to see an endo she admitted she didn’t know anything about LADA (this was a third world country, they have an excuse for being behind the knowledge curve!) but just checked off each item on my checklist and said “you are type 1”. I felt an enormous sense of validation. Then when I got home from the appointment, I said, “I’m happy I’m type 1, what am I nuts?”

Whether you end up being a Type 1 with insulin resistance or a Type 2 after all, you will at least know and then can pursue the right treatment for you.

10

With such a strong history of T1, you should absolutely be given the tests you’ve requested. They are basic tests and could very well inform your treatment. For example, a T1D would NOT want to be taking oral medications, as these can have adverse effects on the kidneys and are in some cases contraindicated for T1D. Also, even if you are in fact a T2D, a c-peptide would help them understand whether you are still producing insulin, which can also affect treatment decisions. If you’re not producing any insulin at this point, oral medications really won’t help and can in some cases be more dangerous, again because of the effects of kidneys and other organs.

Also, keep in mind that children of men with T1D have a higher incidence of developing T1D (as comapred to when a mother has T1D). There are also different kinds of T1D, including several that are associated with specific genetic mutations; you should be able to find information online about those. Some do not present in the classic way.

Finally, I think many people have the erroneous assumption that T1D is a “juvenile” disease. That is just incorrect. About 50% of people with T1D are diagnosed as adults.

As for insulin pumps - if you are really interested in a pump, find a doctor willing to write a certificate of medical necessity and start working with the pump company of your choice to get your insurance to approve. A pump is just one way of delivering insulin. Years ago, us T1D folks had to jump through many hoops with lots of mysterious criteria to get a pump. Sometimes, they would tell us that if our A1C was high, we could not get a pump because that meant we were not “in control” of our D and a pump was only for people who were in control. Sometimes insurance companies would say that we had to have a “bad” A1C to get a pump, because that was the only way the cost was justified. Over the years, the requirements have gotten a lot easier. Sometimes insurance companies require BG logs and C-peptide tests, sometimes they don’t. BUT I CAN ASSURE YOU that the person you saw does not know what the specific criteria are for your insurance company.

Bottom line is you are asking for EXACTLY the right tests. The problem isn’t you, it’s the clinic you’re going to. Can you find a new clinic/doctor? I would suggest finding an endo in your area that has broad experience with diabetes in general.

11

Gosh Sparkysmom: that sounds like a terrible experience. Unfortunately it is one repeated over and over again on TuD. I honestly can’t understand why all diabetics are not tested upon diagnosis instead of having someone eye-ball a patient and make such an important decision. I had thought that the tests must be expensive and now I am hearing that they are not. So what could possibly be the problem?? I admire your courage and perseverance. I hope you get a more positive response when you see your GP. BTW: I am currently trying to work up the courage to ask for these tests for myself. Stay strong! Joanne

12

I think the sheep are bleating and they have not been told by their societies that this type of testing is indicated. Until the ADA or AACE says this is what they should do we will continue to see resistance to tests that could be very helpful for treatment of ALL types of diabetes.

13

I’m sorry you’re going through this. When I told my PCP that my great grandfather and great uncles were Type 1’s (which I didn’t know until I told my dad I had diabetes) and requested the GAD 65 and C-peptide test he said it was almost manditory because of the family history.

14

You are absolutely right about that, and that is why I wanted to get a baseline. Just for my benefit actually. I was diagnosed about 6 years ago and I am quite sure that I am producing at least some insulin, I would just like to get an idea of how much. I am hopeful I am producing a decent amount and that most of my problem is insulin resistance. I need to lose a lot of weight, and that is something I can work on and that I have control over.

15

What gets me, Zoe, is that it was not even a doctor that said that, it was a NURSE. No offense against nurses, but I think I have the right to see an actual M.D. every once in awhile. That being said, I know of one nurse practitioner that is smarter and more intuitive than most doctors I have met.

I guess another thing that irked me was that she said 2 things that directly contradicted what the doctor in that very clinic said to me. First, the doc said I might enjoy a pump, implying that she would be glad to get me started on one, right? And second, the doctor had told me last year that I had both insulin resistance AND insulin deficiency. They need to get their stories straight!

I have just made an appointment ot see my GP next week and I am so looking forward to it!

16

Also, keep in mind that children of men with T1D have a higher incidence of developing T1D (as comapred to when a mother has T1D). There are also different kinds of T1D, including several that are associated with specific genetic mutations; you should be able to find information online about those. Some do not present in the classic way

Thank you, thank you, thank you! You read my mind! Diabetes and the devastating results of it have been a part of my life since the day I was born, thanks to my father’s diagnosis and subsequent death at the age of 27. Maybe that is why I am so passionate about it. I have a 15-year-old son, and I fully intend to be around to make his life miserable for a very, very long time, LOL.

As for the pump, I was just making the statement to this NP that I was researching it because the doctor had mentioned it. I had been terrified of them, but the more I read about it, the more I like the idea. In fact, if I am reading correctly, there is a possibility that I could actually need LESS insulin using a pump than if I were to use a basal one-time daily dose. That in turn would help me with weight control, which is a big issue.

17

Peetie, you are right. I swear if that woman had said “you don’t meet the criteria” one more time, I think my husband would have had to bail me out of jail. You know what that says to me? It says this person is book smart (although I think she might be reading the wrong books, LOL), but not intuitive. Everybody knows since is not black and white. There are shades of gray.

Peetie, do it! You march right in there and demand that they run those tests. You have to be your own advocate with regard to your own health. Believe me, I am learning nobody else is going to do it for you.

18

I wish I knew your PCP! I am going to mine next week, and I feel certain she will listen to me. She is a wonderful doctor and person. He sounds very smart. I appreciate you and the rest of the posters helping me to realize that I am not stupid or impertinent to ask for appropriate testing.

I am going to try to turn this into something positive. Maybe this experience is what I needed to get me mad enough to really work on the things about my disease that I do have control over, and maybe I can use this experience to help others who experience it.

19

I would give up on your internist now. A good doctor doesn’t just look at a criteria checklist and tick “yes” or “no” next to each one. Anybody could do that. Insurance reviewers, with no medical knowledge, do that.

Good doctors make it their job to LEARN and to UNDERSTAND what is going on. They understand the significance of YMMV, and that treating diabetes isn’t as simple as following a checklist. Run, run fast, towards another doctor. If you’re that interested in a pump, I suggest you call one of the manufacturers and ask for recommendations on a doctor who knows their product and is well-trained on how and when to use it. That’s how I found my current endo – by recommendation of a Medtronic representative, and I couldn’t be happier with him.

20

Hi Sparkysmom: When you request testing, be sure to request both the c-peptide and full suite of antibody testing (GAD, ICA, IA-2). Even though it’s been awhile since you were “diagnosed,” GAD tends to hang around for a very long time.

You are correct, if you use an insulin pump you use less insulin. My requirements went down about 25% when I went on the pump.

Congrats to you for being your own best advocate!