So, I'm in a rather frustrating and unique situation.

I was diagnosed LADA while on a freelancing job in Texas. I was put on orals at the time. But things started to go down hill after about 6 months.

1 year in, I moved back to Los Angeles. I got set up with an endo at UCLA. And she pretty much kept putting me on more and more orals. And then victoza of all things. It was getting worse. And 2 years in, she gave me a choice of increasing the Victoza or going with lantus insulin. I took the insulin. It was SO much better... instantly.

I then got off the orals (Actos and Metformin), and added humalog for meals. And basically, I had one month to get used to it before I had to hop in a car and move from LA to NY. The orals took months to fully get out of my system and for my TDD to stabalize.

I'm now in the suburbs of NY. And I'm determined not to move anymore. But I'm having trouble getting set up with a good set of doctors.

I've been to a couple in NY now. In my experience, I'm being treated like a type 2... even though its clear I'm fully insulin dependent and I have labs that show antibodies. If I miss my basal, my sugars climb. I know what it looks like when my pancreas is "half" working and this aint it. And my TDD doesn't really suggest resistance based on body weight. But I've yet to find a doctor that says, oh, LADA? Type 1.5? Instead, they look at me weird. As if I'm lying.

So how does a LADA get any respect? How do you find a doctor or endo that doesn't look at you weird? All I really want to do is move from injections to a pump. But I can't find anyone who isn't trying to get me back on metformin for no good reason.

Views: 184

Reply to This

Replies to This Discussion

Hi Bradley: Welcome! I am sorry you are having such a difficult time, but unfortunately what is happening to you is the norm not the exception for people with adult-onset Type 1 diabetes. Is it possible to go to a diabetes center, one with excellent credentials? And when you call to make an appointment, ask to see an endo who specializes in adults with Type 1 diabetes? Unfortunately, we have to be really strong advocates for ourselves. If I were in your shoes, I would go to the appointment, have my antibody tests in hand, and say that I want the best treatment possible, which means getting on an insulin pump. I know you are in a difficult situation--maybe one of the NY members here could give you a good referral?

I simply tell my new doctor, I'm Type 1. If they asked when I was diagnosed I will then explain, I was an adult slow onset. Very few seem to be familiar with the term, LADA. Myself, I prefer PCP's because they know they don't know much about Type 1 and just let me manage myself.

Zoe's advice makes a lot of sense. Once you tell a doctor that you are a Type I they will take it from there. Don't worry so much about giving them a reason to try and classify your diabetes. If you walk in with your BG logs and it shows you test regularly and that you are diligent in working out the best combination of diet, exercise and medication they will probably focus on helping you howbest to acieve better control. Otheriwse I guess that you might stay on the same treadmill where they focus more of their effort on trying to classify your diabetes.

While I am a T1 I suspect that since we are just 10-15% of all PWDs and it is generally harder to manage (diet/insulin, etc.) than T2 it requires less time & effort to manage your case as a T2 if they can do so. Just guessing, but it seems that much of the effort in treating T2 focuses on diet & exercise and recent studies indicate that they do not benefit as much from testing & real tight BG control as T1s.

Another hint relates to other advice in the thread about finding a "Diabetes Center." That is a good start, but to find a great doctor I always make friends with a nurse who works with PWDs regularly or a CDE and ask them "if your kid had diabetes, what doctor would you send them to?" Doing that has worked for me numerous times and you are likely to get an informed, knowledgeable and frank recommendation.

The "ask a nurse who she'd send her family members to" approach works wonders, especially if she's already clued in to the diabetes work via her professional contacts (a CDE or nurse in a facility where she interacts with a lot of diabetics.) Nurses know which doctors are clueless, which doctors have anger issues, which doctors are cold as ice, which ones are shining examples of the doctoring art. I worked for several years in a hospital and I knew exactly which doctors I'd send my family to see -- and which ones I would tell everyone I loved to avoid like the plague.

Actually, Tom, that old figure of 10% for Type 1's was when they were still grouping people like us with Type 2's. The current figure is approximately 25% for Type 1's and 75 for Type 2's The 25% includes the 10% of more "typical" type 1's and the 15% of those of us diagnosed later in life.

That's a great recommendation - to find a nurse or CDE who works with PWD's and ask for her recommendation

Bradley,
Your story sounds familiar. I found a young endo that is very well read and listens. I didn't think this was the case after the first visit, but subsequent visits have been a delight and we have a very good working relationship. The more knowledge and effort I show the more supportive and helpful she becomes. She started crying on my last visit because I'm one of the few patients she has that records my BG's, meds, food and exercise so she can see what is going on. She wants to help others but gets very frustrated with many of her patients who "stop taking readings because they are high."
I guess my point is, don't give up after the first visit.

If you can find a university type setting to go to.. that could be your best bet. It may not work always, but that's who I saw after Student Health freaked out over my fasting BG numbers. I feel like those in a university setting are more likely to talk to their peers about 'confusing' cases and more likely to want to learn more...

Well unfortunately there is no summer camp for a LADA. And if you look like the stereotypical Type2 or old like me your probably going to be treated like one buy many doctors and the public...I don't think there is any difference in a intensive insulin regiment for a type1 LADA and a Type2 that has low C-pep. Many of us LADA's will agree that we are kinda stuck in a no man's land between type1 and type 2.

As long as you can find a Doctor that will supply your needs it makes little difference but there can be a significant difference in your insurance company's benefits depending on what diagnostic code is used on your paperwork.

Good luck and if your doctor will not treat you with respect and talk with you like a equal ....find a new one...

As a LADA, I actually don't feel stuck between type 1 and type 2. Aside from my history - how and when I developed Diabetes, I am now pretty much the same as any other Type 1. In fact, since the term LADA is unfamiliar to most, I just say "Type 1" or "Adult onset Type 1" if some clarification is needed.

Just a thought, but Dr. Bernstein is in upstate New York, I believe. His office has a great reputation for giving information over the telephone. You can call them to find out which BG meter they're currently recommending, for example. It might be worth calling and asking them who they would recommend in NYC.

Whoever you see, your own records and understanding of your diabetes management is going to be what matters most, in the end. It sounds like you're doing a good job staying on top of your management!

Oh, by the way... I understand that more and more T1s are taking Metformin these days. It seems to protect beta cells, which can be helpful. It's also cardio-protective, may reduce the risk of many cancers, and helps manage or avoid Dawn Phenomenon. It's up to you, of course, but you might want to consider whether Metformin has advantages to offer that would be beneficial to you. It's also an inexpensive drug in the States. (I take the extended release form which, here in Canada, isn't covered by my provincial health insurance and is a bit pricey.)

RSS

Advertisement



REsources

From the Diabetes Hands Foundation blog...

FDA Docket Extended! We Need You.

If you are new to diabetes advocacy in the traditional sense of the word, you may be thinking, “What the heck is a docket!?” I certainly was the first twenty times I heard it (yes it took that long). For Read on! →

An Open Letter from @AskManny, @DiabetesHF to @NYTRosenthal, @NYTimes

Dear Ms. Rosenthal: I am a person living with type 1 diabetes since the age of 30. I am also the President and co-Founder of the Diabetes Hands Foundation, a nonprofit aimed at connecting and mobilizing the diabetes community. Seeing Read on! →

Diabetes Hands Foundation Team

DHF TEAM

Manny Hernandez
(Co-Founder, Editor, has LADA)

Emily Coles
(Head of Communities, has type 1)

Mila Ferrer
(EsTuDiabetes Community Manager, mother of a child with type 1)

Mike Lawson
(Head of Experience, has type 1)

Corinna Cornejo
(Development Manager, has type 2)

Heather Gabel
(Administrative and Programs Assistant, has type 1)

DHF VOLUNTEERS


Lead Administrator
Bradford (has type 1)

Administrators
Lorraine (mother of type 1)
Marie B (has type 1)

Brian (bsc) (has type 2)

Gary (has type 2)

David (dns) (type 2)

 

LIKE us on Facebook

Spread the word

Loading…

This website is certified by Health On the Net Foundation. Click to verify. This site complies with the HONcode standard for trustworthy health information: verify here.

© 2014   A community of people touched by diabetes, run by the Diabetes Hands Foundation.

Badges  |  Contact Us  |  Terms of Service