Type 1 Specialists

[mimsey]

Do any of you have endos or other diabetes specialists who specialize in primarily in treating Type 1 patients?  My husband is in his fifties and has a slight gut.  As a result, despite the fact that he has had Type 1 for 30 years and it is always marked that way in his chart, we usually discover that his endo, GP, or whatever has been assuming he is Type II.  Also, because the majority of their patients are Type II (obvious given the numbers out there), they seem to be more knowledgeable about Type II and have a much less clear understanding of the unique difficulties of living with Type I and achieving decent control.

Example, we recently got a CGMS (Continuous Glucose Monitor).  We were informed by their nurse educator that Pediatric Endos are eagerly adopting this technology to use with their patients (no doubt primarily Type 1), whereas the Endos who treat adults say "It's too complicated", "Patients won't understand the technology", "Patients will never use it".  As a result, most don't even mention the possiblity to their patients.  These are of course the exact same things they said when home glucose monitors came out and look how wrong they are.  I think the difference between the Peds and Adult Endos is that the Adult Endos see primarily Type IIs and their statements may be valid for them (although I expect a lot of Type IIs who are using insulin and are highly motivated would gladly use a CGMS.

Anyway, again, do any of you have endos who specialize in Type 1 and do you feel it makes a difference?  Any ideas on  sources of info for endos of this nature in the Iowa area?

[JDRF Volunteer RL]

Hi!  I'm from Iowa, and yes, we have an endo that is for type 1s, and although ours is a ped endo since my daughter is only 10, but there are adult type 1 specialists in Iowa as well.  Do you live in central Iowa?

[mimsey]

S.E. Iowa

[mimsey]

Can you suggest some specific way to locate an adult Type 1 specialist.  I've made several calls but haven't had a lot of luck.

[JDRF Volunteer RL]

I would call the JDRF office in Cedar Rapids.  The staff there is familiar with all the adult type 1 endos in the area.

[phone]

[Larry68]

In my experience (as a 40+ year type 1), endos with an understanding of type 1 adults (those of us with complications, for example) are rare. I have found 2, one who was part of a large endo group and chose to focus on type 1, and my current endo who IS a type 1. The understanding and advice I recieve is unquestionably much better from such a doctor, even compared to those who have had many more years experience. It is worth the effort to search for one.

[mimsey]

Thanks for your comments.  Your experience sounds like what I expected would be the case and encourages me to continue my quest.

I suppose it's hopeless to try to get the Type 1 community to lobby their doctors for more Type 1 specialists?   I really think it would improve the standard of care.

I've talked to several practices to try to find somebody who specializes in Type 1 and the person I wind up talking to (most often a nurse) usually sounds like they can't even understand the question ... they insist that all their doctors specialize in both Type 1 and Type 2 and don't see why it would make a difference.  Frustrating to say the least.  

I'm trying to reach the Iowa JDRF office but haven't been able to get through.

[JDRF Volunteer RL]

Keep trying, maybe tomorrow.  With the weather they may have closed the office for the day.

[mimsey]

Thanks for everyone's suggestions and encouragement.  I talked to a JDRF volunteer and she told me that there are NO adult Type 1 specialists in Iowa.  I generally love living in a rural area in a rural midwest state but I guess this is one of the drawbacks.  It seems like you have to be in a big city to find a Type 1 specialist.  It seems kind of crazy because the University of Iowa hospital in Iowa City is a large teaching hospital with many endocrinologists on staff so you'd think they'd have at least one who specializes in Type 1.

[Larry68]

You may wish to contact UI endocrinology outreach directly. They should know what is avialable in the state.
http://www.uihealthcare.com/depts/outreach/imendocrinology.html

There has to be a lot ot T1 diabetics (and maybe more support) in eastern Iowa, as Galesburg IL is a hub of Swedish immigration, and Scandinavians have twice the incidence of T1 diabetes as the rest of the world. A lot of them spread into eastern Iowa.

[mimsey]

Thanks for the tip.  They couldn't suggest anyone in Iowa who is a Type 1 specialist but the link you included led us to an outreach endocrinologist who see patients once a month in a town only twenty miles from here .... instead of the hour and half to Iowa City which was the nearest endo we could find before.  From what I read about him on-line (admittedly scanty) he sounds pretty good.  So we have an appointment in a couple of months and we'll see how he turns out.  I can't tell you how appreciative I am for all the support and suggestions from people on this forum. You guys are the greatest.