Is it necessary to be followed by an Endo?

Type 1 and LADA
1

I recently immigrated to the US from Canada. I have a PCP and when I started the pump I asked her if she would refer me to an Endo. She told me it wasn’t necessary at this time but if we run into any issues than she’ll refer me to one. This baffled me as I’ve always been followed by an Endo and have gone through 2 diabetic day clinics (intense diabetic education) since my diagnosis 17 yrs ago. I have rarely ever had a family doc. Is this typical in the US or should I be insisting for a referral to an Endo? I test frequently and adjust my own basal rates, I:C ratios and correction factors so it’s not a case of me running high and not know what to do. I’m just curious if this is typical here in the US?

Thanks!

2

Most T1s in the US have endos, so push for what you want. T2s often have to insist on an endo referral.

3

I would not feel comfortable with my PCP treating me for my diabetes. She also is not comfortable with it. It also took me going through several endos before I found one that I liked. The endo I have now took me about 5 months from the time of referral to the time of my appointment. I would not want to wait that long from the time I thought that I had a problem till I would get an appointment to treat the problem.

I would say go with your gut. If you feel that you would like an endo then I would push for a referral. If you are comfortable with your PCP treating you then stay with your PCP

4

If I had my druthers I would only see my PCP and not have a PCP and an endo. I received excellent diabetes care for many years from my family practice doc but he doesn’t do pumps. Don’t get me wrong I love my endo and have full confidence in her. I just hate that philosophy of delivery of care it feels so fragmented to me that the endo does x and nothing more and PCP does everything but x. And it’s really difficult to get everybody on the same page sometimes and to share information and make sure that the right hand knows what the left is doing. This is an area where HIPPA has not helped at all and it’s a royal pain if you’re sicker than a dog and need to coordinate that care yourself. I still haven’t been able to get all of my labwork results ordered by the two physicians to each other.

Some insurance plans in the US restrict access to specialists.

That being said you’re preferences may be totally different and I wouldn’t hesitate to push for an endo if that’s what you want.

5

The only way I’d see a PCP for my diabetes care is if they have an official Diabetes Management Certificate. And even then, I’d push to eventually see an endo.

6

As much as I’d want one, I’ve been doing just fine without one. Making a 3 hour trip just for someone to tell me stuff I pretty much already know just doesn’t seem worth it. Now, if there was an endo in town that wasn’t a total self censored I would totally go.

Once you’ve had it long enough, no one will know your body better than you.

7

It depends on the HMO or insurance company. Some of them are (my opinion) EVIL and won’t let you see an endo no matter how much you need one – it’s all about the $$$. Others will refer appropriately. It really varies.

With all the complaining and hysterics about “death panels” with the efforts at health care reform, I just shake my head because we already have “death panels” in the form of for-profit insurance companies and HMO’s that refuse to provide appropriate referrals and appropriate care to people like us with serious, chronic conditions.

My PCP is an IDIOT. The quote that ended my trust in her for all time was saying “you’re going GREAT” when we just got back an HbA1C that was 10.7, my second in the mid-10s in six months. I wanted to scream at her.

I’ve had to fight my HMO all the way – to get enough test strips prescribed, to get Lantus prescribed several years ago, to get Novolog prescribed this year. They wouldn’t let me try Byettta two years ago. Now they won’t let me try Levemir or a CGM. My sugars fluctuate between 34 (lowest low) and the high 400’s (highest high was over 500 but that was a one-time thing) – I am NOT “doing great”. I have hideous dawn phenom, hideous insulin resistance and neither my PCP nor the “really good with diabetes” internist she recommended me to have one, single CLUE about how to help me.

They’re utterly clueless idiots, and I’m being generous there.

I got something like FOUR MINUTES of instruction when she finally prescribed Novolog to me – my first-ever prescription of fast-acting insulin and NO ONE at my HMO is qualified to train me how to use it – they don’t even have a CDE to refer me to, no classes, no hand-outs. They gave me this stupid sliding scale that stops at 250 and she gave me no idea of what to do if it’s over 250, a regular occurrence at my house. She didn’t say one word to me about hypos, how to treat them, how to be prepared for them, signs to watch for, nothing. I said I wanted to know how much to inject to cover the carbs in my meal and she said, “Really? Doesn’t that sound like a lot of work?” I wanted to slap her smug face. YES it sounds like a lot of work – controlling diabetes is a lot of work – but going blind and losing your feet is a lot of work, too. Freaking idiot.

The pharmacist had to explain to me how to use the Novolog pen and she did so by READING THE INSTRUCTIONS in the box. She didn’t know how to use the pen. No one there did – and they’ve been out for years.

I feel like my HMO’s bean counters WANT me to die so they won’t have to provide me with care any more – like they really are a defacto “death panel”. It’s horrifying, really, how incompetent they are.

Horrifying.

Fortunately, I have books and the Internet or I’d be dead already. Not one of the doctors at my HMO has the knowledge of a 10-year-old type 1, three months after diagnosis. Not ONE of them has that much competence.

8

we are illuminated that we have the net otherwise our medical conditions would be a dark hole.

9

Go to an endo if your pcp wont refer you call your insurance, if you need a referral and tell them what is up and remind them that improperly cared for t-1 cost a lot more to them then 3 or 4 endo visits a year.

10

Heck my PCP see me for check ups, physicals and the flu. Besides that all my issues are with my endo

11

If you want my opinion: when I was first diagnosed (age 14) the pediatric endos were really truly wonderful at getting my bg sorted out. I stuck with endos for many many years after that. But… realistically I was having few problems with my bg, and the endos were concentrating so much on my bg’s that they literally were not looking at the rest of my health. And to tell you the truth, the non-pediatric endos I had in my adulthood were never as good as the pediatric endos I had in my teens.

Fast forward 30 years :slight_smile:

For the past several years I’m seeing not really a “PCP” in the traditional sense but a doctor of internal medicine who knows a little bit about diabetes but is also helping me work on my health issues (especially cardio health) more broadly. I am overall happier with this doc, than I’ve been with any endos for decades. I know how to do the bg control stuff day to day and don’t need an endo for help with this. (Not that the other endos I’ve seen for the past 20 years were helping me much anyway.)

12

Go see an endo, it may take time to find the one that suits you best. I drive 6 hours each way to see my endo. All the other ones I tried were less than stellar. Not saying they weren’t good, but I teach endocrinology and when I know as much as they do it didn’t really help me any. The one I see now is absolutely incredible and he knows more about clinical trials than I do.

13

I’m lucky enough to have my son cared for by both a great PCP and a great endo. I would insist on the endo, though, because it seems like very few PCPs understand type 1 diabetes. Even my own PCP, who is chief of pediatrics at a major local hospital and extremely conscientious, made it clear that he would be happier having Eric in the care of an endo. Be sure, though, that you do your homework and find an endocrinologist who is familiar with T1D and has experience treating T1D patients. Not all endos seem to understand the difference – shame on them – so you want someone who knows the ropes.

14

I’d had endos that I wasn’t wildly enamored of and so I switched to a GP I liked, he was helpful, occasionally would sort of provide some useful suggestions but I have not really ever been a huge question asker, I am more of a “hmmm, I need more/ less insulin” myself person and pretty much do the same thing with any issues. Which was a slight problem for a while but I decided to fix it with a pump.

When I got the pump, he immediately kicked me over to an endo. To me, it sort of seemed like the question “to whom do we send AcidRock” was decided administratively, like the clinic “network” had decided “pump= endo” and there wasn’t even a question about it. I don’t know what would have happened if I had demanded that the GP do the pump or whatever? I’m not sure what scenario might be playing out behind the scenes @ Nancy’s clinic but perhaps the Endos are “overbooked” w/ thyroid patients or something and a memo went out “no more Endo referrals”, in which case it might not be the doctor but the doctor just works there and figures they’ll handle it? I haven’t run into this too much as I was able to get referrals to a podiatrist fairly quickly on a couple of occasions I needed one. Now I mostly see convenient care when I get sick or sprained and see the endo a couple of times a year but this is a different “network” since we’ve moved.

15

I think it depends on what you are looking for in a doctor. The very first doctor I went to (the one that diagnosed me) was an internist. His partner was an endo so my doctor was able to run stuff by him without my having to see him. Over the last 27 years, I have gone thru a bunch of different doctors. As far as diabetes stuff, the two best doctors were internists and the two worst were endos (actually, there were more than 2 bad endos, but to keep it even ….).

I am currently only seeing an internist. I have made appointments with some endos looking for thyroid help the last 2 years but have not been back to any. I try to keep up with diabetes stuff and really only look to my doctor to sign scripts. When I wanted to change from Lantus to Levemir, I asked my PCP and he switched me. The same thing when I wanted to switch from Humalog to Apidra. I had my PCP sign the papers for a CGMS and a pump. He was reluctant on the pump but I assured him that if I needed help, I would be able to get that from Animas and I would not be bugging him.

Late 2008, I had changed PCPs because of some health problems. The new PCP said they required all their diabetic patients to see an endo. I wasn’t into that because to me, that was a waste of time & money. I already have several specialists I have to see on a regular basis and did not see the need to add another doctor to the list so I found a new PCP.

It really boils down to what you want and need. If you would feel more comfortable having an endo, then you should insist on being referred to one. If you really don’t feel like you need one, then save your time & money.

16

It really depends on the endo. I had one who really didn’t know what he was doing, except to prescribe insulin. As long as I was doing well, there were no problems, but when i got into trouble with BGs going higher and higher and I couldn’t get them down, he was useless. He let me go into a coma and I almost died. I was just lucky that my friends came looking for me when I didn’t show up for a picnic, and got me to the ER.
I have a new one now, and he’s a Type 1 on a pump, and he knows his stuff – he gave me more guidance in 15 minutes than my previous one did in 18 years. I finally feel like I’m in good hands.
Good luck to you, and I hope you get what you need!

17

I guess the reason I put the question out there is because I feel like I was totally spoiled back home. My first Endo was a T1 who was heavily involved in research and worked with another Endo who started up Diabetic Day clinics in Quebec to help educate diabetics in self-management. You spent 5 days with an Endo, an RN, a dietitian, a social worker and a fellow diabetic who was complication free for 25 yrs. I went through this when I was first diagnosed and then again 5 years ago when I came back from living overseas for a refresh and a switch from Humolog/Ultralente to Novolog/Levemir. The second Endo I dealt with there was a complete jerk who had the bedside manner of a rock so I insisted on another Endo who turned out to be my first endo’s teacher. Small world! The last Endo I worked with was the one at the antenatal clinic when I was preggers.

I’ve been very fortunate in my 17 years to have Endos encourage me to be my own advocate and know my own body so I’m apprehensive to deal with an Endo that will have a “know it all” attitude. My PCP has a few diabetic patients (all T2) so she does take the time to listen and asks questions. I had to tell her nurse how to order Opticlick pens for her other patients. When I brought in the forms to go on the pump she was totally geeked about it so I’m sure when she gets my forms for the CGM she’ll be equally geeked as well. I have to call her and let her know that I want one. The only time she’s questioned a request I had was when I asked her for a Glucagon kit. She was a bit taken back until I explained to her that I knew what it was, what it was for and that I had used one before.

Thanks everyone for your feedback. I’m trying to get the hang of this new healthcare system, it has some cool advantages I’m not use to and some major disadvantages that baffle the hell out of me. Fortunately, my hubby has very good insurance through his work so my pump and pods were covered at 100%.

18

Hi Nancy, I saw that you live near us from your post to Barb about the meet ups. We live in Troy. With my son and daughter both having type 1, we have seen just about every endo in this area over the years. I wouldn’t recommend any of them, either because of the doctors themselves, or their office help. For a few years I was happy having the PCP do all of my daughter’s care. Our HMO required that an endo prescribe the CGM, so we had to go for that. Also the PCP wouldn’t agree to try her on Metformin, so again to an endo for that script. And recently the endo refused to put her on natural thyroid meds, so we found an endo that would, but she is in Grand Blanc which is about an hours drive. I was going to change to her for the d stuff also, but now I have changed my mind. They never answer their phone, and it was quite maddening when I needed a new script for testing supplies because of insurance changing at the start of the year and couldn’t get a hold of them. I ended up getting the new PCP to do that. She really doesn’t want to do the diabetes stuff, but said that she will. She admits that she knows nothing about Armour, but said that she would refill it once we get to the right dose. I am hoping that we won’t have to see this endo often. I seriously doubt if you will find an endo in this area that would ever compare to what you had. Since you know what you are doing, I would advise you to stick with the PCP unless you run into something that she can’t handle.

BTW, I am originally from Canada also. Just across the border in Windsor though, but I have two brothers that live in other parts of Ontario.

19

I think there is nothing worse the bad office staff at a doctors, they are the deal maker or breaker for me.

20

The large office in this area is called Michigan Endocrine. Once they left us in a room for a very long time. It finally was getting very quiet, so I opened the door and found someone. They hadn’t put the chart on the door and the doctor had no idea we were there. Most of them were gone for lunch. Then once we walked in and signed in, only to be told that I had canceled the appointment. Yeah, that is why we are here. They had called to confirm it the day before and for some reason they wrote it down that we were not coming. Those are just the two biggies, there are more. There are a couple of good people that work there, but the majority are pretty awful.