Frustrated and not really sure what to do next

Type 1 and LADA
1

A little bit about me first, I am a type 1 diabetic and have been since I was 22. I was misdiagnosed type 2 by my PCP because of an elevated A1C and being "over age 18".

I was put on numerous type 2 medications, all of which failed and dropped from 170lbs to 128lbs before my liver started to fail and my PCP referred me to a gastroenterologist who referred me to my endocrinologist.

She was amazing, she started me on MDI, helped me figure out Insulin:carb ratios, and did an antibody test (which came back negative but she said that was not surprising if it wasn't right at the beginning and she said I could test positive for antibodies at anytime and negative at any time because you don't ALWAYS make them right away). Anyways, my c-peptide came back that I wasn't akin any insulin soooooo Type 1 was established and then I worked towards getting my pump which I have now been on for 2 years.

I am in school (for nursing) and I had drop down my hours at work to finish clinicals so I lost my health insurance and had to pay out of pocket for a different one. In order to save money (a lot of money) I elected to switch companies. The new company isn't accepted by my endo (my 1st mistake I know). So, I had to pick a new PCP and a new Endo… DISASTER happened:

First of all my new PCP wouldn't prescribe ANY insulin because she "is not comfortable with prescribing insulin for a pump." Weird because she had no trouble with the xanax prescription but the insulin to keep me alive was an issue…

So, she made a referral to an Endo and gave me a paper with the date and time which was last monday. I showed up to the new endo, and they had no record of my appt. I showed them my paper and they said the doctor had already left for the day and the paper I had isn't from their office… duh it was from my PCP. So, they called my PCP (mind you I was literally crying at this point). PCP says "oh no idea what happened cause we called and spoke to someone over there to set it all up… can you get her in ASAP?"

The endo reschedules me for this monday (yesterday). I was so pissed when I left I wasn't even going to go. I cried all the way home because I'm running low on supplies and have very little insulin left and they don't seem to care. I am also terrified of doctors and hater going to the endo even my old endo who was amazing and supportive.

So, my fiance made me suck it up and go. And I decided to put my best foot forward and give the new endo a legit try. Maybe it wasn't their fault? I went in yesterday for an 11a appt. After listening to the girls in the office behind the glass window for a good 30 minutes talk about "still not having that girls records from the other doctor," they informed me that they still did not have my records but that my old endo was hopefully faxing them right now because they called and asked. (Later I found out that the new endo ever called the old one like they said they were going to the previous week! That's why they had no records when I showed up… they never requested them as they said they would!)

After waiting for another 30 minutes they decided to see me without my old end's records which terrified me. So they took me back and the medical assistant stated they didn't need any old records to see me and everything would be fine blah blah blah. Resident came in and talked to me for like 5 minutes…. then the infamous new endo finally made an appearance… for a whole 90 seconds. He literally did NOTHING. He kept asking WHY I was on a pump and how I know Im type 1 and Do I know how rare that is… and what was my c-peptide and then he asked the be all and end all question that made me loose all hope, "Why exactly are you here?"

SERIOUSLY!?!?!?! I have explained to numerous people in your office why I am here. So I took a deep breath and said I needed supplies for my pump and insulin… and he said "Oh I don't do that… you need to talk with so and so up front… come here" he took me back up front and said "SO and So, help her."

That was it! The girl he asked to help me was not able to help me. I still have no supplies for my pump and no insulin as of yet!

I worked for a very very very long time and put in a lot of work fighting to get to wear I am right now. I am terrified I am going to lose all the work I have made with my diabetes and end up VERY sick if not dying from this before I get through this year.

My blood sugars are high, I'm depressed, and I don't know that I will have the insulin I am going to need to keep it under control.

I called the health insurance company which informed me that I can't change policies until open enrollment next year because my policy already started. But I can cancel theirs if I don't like it… but I can't get anything comparable without paying WAAAAAAAAAY more out of pocket.

I'm so sorry to vent here, but this is the only place I know of where people might have creative or applicable ideas to help me. So, What are my options?

2

Wow that sounds like a nightmare. I’m really sorry. I don’t have any specific advice but the one thing I would suggest is to find a pcp who will be supportive and write the prescriptions you need without a runaround. It is much easier to pin down a pcp for a script usually-- I have them write all of mine just because they are easier to deal with than a specialist and I know exactly what I need already…
I hope this gets better for you soon

3

Oh man! I am so sorry! That sounds absolutely terrifying and is like my ultimate fear as I'm also a type 1 diagnosed at 22 and had a type 2 misdiagnosis and went through hell with that (You starved yourself too apparently? So did I! ) . This is also my ultimate fear because I have a great understanding endo and if I lost him and had an experience like that I'd hate my entire life it'd be awful. If you can try switching again that might help but if you can't I really have nothing to tell you as I'm not prepared for this kind of nightmare either.

Just know that I feel so bad for you and wish I knew some way to help because I know I could be in your shoes at some point and it's TERRIFYING. I'm particularly scared of this when I'm trying to get school done and get a job and if I get insurance that doesn't cover my current endo I'm gonna be scared to death.

4

I am so sorry you're dealing with this right now. That sounds terribly scary and frustrating.

My only advice would be to try a community clinic. I'm not sure where you're at, but where I am they have low cost appointments for anyone that needs them. They're typically pretty familiar with diabetes, too, from what I can tell (both T1 and T2). Generally speaking they accept walk-ins or you can make an appointment. Around here (San Diego) the appointments are approx $30.

5

Walmart sells older insulins (in most states) without a prescription for $25 a vial. Wont be as fast acting or as slow acting as modern insulin, but workable.

6

Yeah , I was gonna suggest that too. I feel like that's the best back up plan if you have nothing else. It's kind of a transition and can be complicated from what I understand but hey older insulin's better than none.

7

Also, see if your previous Endo's office will give you a prescription over the phone. They might be willing to do that. With mine I can call them and tell them my prescription ran out.

8

9

If you do the math, it may be more cost effective to pay out of pocket for the old endo, have them write the rx's and get the supplies that way. I don't believe that an insurer can deny an out of network rx but they can refuse to pay the bill, or maybe not. This is totally the sort of thing that sets me off. If I was closer, I'd go hit golf balls at their office but I totally loathe the practice of having these sort of in-network docs who are like hitmen who don't rx stuff, particularly if you are low on supplies. I've been through a couple of docs but they've always come through for me. Out of pockets endo costs would suck but out of supplies is worse I think.

10

That's astounding. You shouldn't have left the office without a prescription for insulin, but you clearly felt they were pushing you out the door. Go back there as soon as they are open and explain your situation and hopefully you'll talk to a human being this time. If not then you will have to DEMAND that you get a prescription for insulin, or better yet a sample bottle (they undoubtedly have lots of them in their refrig). Don't take no for an answer. Make it clear that this is your new doctors office and they are your only source for the life-saving medications you need, and if they refuse the consequences could be catastrophic (for you and them both). Consider taking your boyfriend or some other friend with you for support.

11

omg.. this is so horrible. I agree with Jag, take your bf with you and go back to the office and demand an rx for insulin. Make it clear that they will be liable if they don't rx insulin for you and you end up in dka/hospital or worse since they have accepted you as a patient. If this will be too confrontational for you you can also try a phone call first. Also call up your old endo and either make sure they fax the records there or pick them up yourself and deliver them. While you're at it make sure to make copies of them for yourself, so that if another idiot tries to deny you insulin or question that you're type 1 you will have your records to prove otherwise. I would also ask your old endo to rx for you if possible, if this doesn't work, until you can find someone else. If this new doc does rx for you I would then immediately begin to look for someone else in your network who isn't a total jerk. If you can find a gp who will listen and write the rx also that would be good, but ultimately I think you're better off with a good endo.

12

I'm so sorry to hear of your troubles. The sad thing is that unless you know the system and are pushy you basically get chewed up and thrown out. You are not powerless here, remind yourself of that. I actually would have stopped the PCP dead in his tracks by demanding to know why he would make the medical decision to stop life sustaining treatment to a T1. Legally that would be a very, very bad thing. My experience with most PCPs is that they are very compliant and willing to continue ongoing prescriptions.

If you sit down and think about it, you still have lots of options and control in the situation. I know it can be frustrating, but you can work through this. I would even suggest tactics such as simply going to the pharmacy, telling the pharmacist the story and asking him to contact your old endo and simply ask for a renewal. That can be done. No charge.

13

So sorry to hear about your doctor troubles. Wish I had an answer for you but others here have had some good suggestions. I’m newly diagnosed and struggling to get good healthcare myself, unbelievable that you’re on insulin and a pump already and still having these problems!

14

Well, good news and no news…. The no news is that I haven't heard anything about my pump supplies yet. The good news is that I MIGHT be able to get my old part time spot back at work and get my old insurance and therefore old doctor back… I should know in a few weeks.

Thank you so much for all the support and helpful ideas. Sometimes it's just nice to know you aren't alone in the world.

15

I'm glad to hear that you can maybe get your old job/insurance back and thus your old endo too. I would do your level best to get her or this new doc/office to rx what you need until then. Don't go without insulin for any reason, go to an er if you have to or to a clinic to get an emergency supply and then make sure in the future to always have an emergency supply in case something like this ever happens again. Even if it is only for mdi.

In addition, I would not ever use this new doc for anything other than an rx for what you need now, he sounds like an arrogant, irresponsible jack ■■■ who you should never let treat you for anything ever.