Hello
Ive been with my partner for 14 years. He was diagnosed with T1D in May of 2004 when he was 22, a month after his father passed away from “complications” from T1D. (His father was diagnosed at 16 and was what my partner called a ‘brittle’ diabetic and managing his highs became insurmountable after the death of his son in Iraq (my partner’s brother) 6 months prior. My partner was the one who found him when he passed.)
We’ve moved a fair amount of times. We met in Alabama, moved to Colorado, the DC area, Alaska and have been back to the DC area a few years.
He has never seen an endcrinologist regularly.
Last year he was having issues managing BG spikes and lows. He was able to get on dexcom g6 last July, which has immensely helped- as he was testing himself 5+ times a day and had to deal with “surprises” often. He made an appointment with an endcrinologist and was seen last fall (the first endo he has seen in 3 years) but was not satisfied with his appointment (he was referenced as a “weightloss doctor” in several google reviews- I’m not sure he had many type 1 patients).
Despite being recently motivated, I feel these types of doctor encounters have really inhibited his motivation to seek out care throughout the years.
I was wondering if anyone has any reccomendations of any endocrinologists in the Northern Virginia/DC area. I really think his prioritizing the importance of seeing an endo will plummit if he has another appointment like his last one, and seeking out another doctor and scheduling another appointment will get pushed aside to the back burner.
hello @Rebel.W welcome to our forum! As a general rule we can’t give recommendations on the forum because everything that everyone types is public. You can try going to the JDRF locations “Find a Chapter” at this web site https://www.jdrf.org/chapter-finder/ and talk directly to someone… they may or may not have a recommendation. I use my medical insurance web site to find local convenient endocrinologists and many of them have resume information.
highs and lows happen. I have 40+ years experience treating my Type 1 and so I don’t really need an endocrinologist. I have one because of testing and supplies authorization, but she generally does not help me with my management. Testing 5-10 times a day or using a CGM is really very normal for T1. So are high and low blood sugars. I consider myself an expert but I still get numbers like 40 mg/dl and 350 mg/dl once in a while. If you look at all the inputs to blood sugar control “level” or “flat” control is impossible, even if you had the worlds best endocrinologist living at your house.
a better way to judge if I need help is my A1c or “time in range”. the A1c is the standard for health but only represents an average. so my a1c is 6.2 it says nothing about how many times I am high or low, in fact if I offset all my 350’s with 2 or 3 readings of 40’s I stand a good chance of having a decent a1c. Time in range shows me the total time in my desired blood sugar range, which does show my highs and lows. a high a1c (IMO above 7.5%), or a time in range of less than 70% are good indicators that coaching and help are needed, and even so a CDE can offer practical solutions, sometimes even more so than an endo… (this is an opinion)
anyway hope you are OK. there is a ton of experience here, i hope you and your partner can get the support you need.
Many (or at least some) of the many hospitals in the DC area have diabetes treatment centers in their professional buildings. These are group practices, which are nice because you have a number of physicians under one roof. I’ve been going to a DTC office for a few years now and it’s nice to know my physician is so close if I have an ER emergency - thankfully it only happened once but I let them know who my endo was and she came to see me.
@Rebel.W I live in Loudoun County, VA. Welcome to the group, though I’m sure you’d like to be elsewhere. Your support is noteworthy! I won’t go against site policy regarding stating names, but there are some sites like LoopandLearn (its a site primarily for people using the DIY Loop program to link a G6 with various insulin pumps in hybrid close loop system) that do allow people to list positive experiences around the world. I’ve struggled with finding an Endo that takes my particular insurance combo and follows the common cry to support an integrated team approach (doc, NP, CDCES, etc.). I found a very few and none that took my insurance or had openings for new patients. What I’ve come to understand and strongly believe, is each of us needs to be our own advocate, i.e. do our own research, lead our own team, and be the “decider” with expert advisors (docs, NPs, CDCES); we need to listen to the advice, but recognize its advice, and then decide for ourselves. In an emergency, we all rely on medical authorities, but no doc based on a 15 min appt 3-4x/year knows better what’s working and what’s not, it has to be a discussion. If you can buy into that and perform that way, then many of the Endo’s in the NoVA area will suffice your needs. If your partner is looking at an insulin pump/G6 combo, check out the LNL site for good info. But I echo @joe’s advice, A1c is one measure, but not the best; TIR is a very good barometer of how your partner’s doing and the stock Dexcom Clarity app can spit that out easily, as can the Sugarmate app that can use Dexcom data. And @wadawabbit (Dorie) is fine source of info too.
@Rebel.W One other reference for you: https://integrateddiabetes.com/ This org is operated by Gary Scheiner who wrote the book Think Like a Pancreas. He and the team of IDS are great, all have lived with T1D and provide in-person, online, and phone consultations for folks. They are NOT doctors, so do no prescribing, but their approach is practical and person-to-person based. They do not take insurance, but might be very helpful. Take a look at their website and see if they might be a good fit for you and your partner.