Joslin Visit for Second Opinion

[Ategeler]

So after 4 1/2 months waiting for an appt. with Joslin Diabetes Center, I am finally slotted to go on Wed. I am getting a second opinion on my diagnosis of Type 1.5 and see if there is anything different they would do in my treatment plan. I have been trying to rack my brain on any additonal questions, I should ask while I am there.

Is there anything anyone would specifically ask with regard to this condition? One thing I did come across recently is that, according to 2009 ADA Guidlines, Newly diagnosed Type 1 Diabetics should be tested for Celiacs Disease. This is something I am planning on inquiring about since my regular Endo has not mentioned it.

[Rekarb]

I would ask about being tested for certain genetic markers. HLA being the foremost to come to mind. I've been reading about an AB classification system for 1.5. "A" represents antibodies. "B" represents beta function. It gives 4 different classifications that seem to represent different treatment modalities and treatment outcomes. I'll see if I can find the link to this paper.

Good Luck

Mike

[foxl]

Mike, please DO!

Looks like I am on Met only, for the time being ... and diet. And other supporting measures of course ... ;) Will revise my meds list once I start.

[Ategeler]

Mike-that would be great! Thanks for looking into it!

[Mothernature]

Be careful. Your first visit to Joslin is not just to meet with a specialist. They set you up for vision, medical consult, and nurse. It is harder than heck to get ahold of people to cancel parts of their regime.

[foxl]

Oooohhh, they do a team approach. I have dealt with those. It can make you feel like you are on a conveyor belt!

[Ategeler]

Uh-oh-what do you mean a team approach? I made an appt. with a specific doctor. Will I be meeting with more than just her?

[foxl]

Uh-oh-what do you mean a team approach? I made an appt. with a specific doctor. Will I be meeting with more than just her?

I cannot answer that for Joslin's, April, but my daughter sees a Cleft Clinic ... a total of ten specialists, half of whom in her case seem extraneous because she has a Cleft Lip, only. I got billed for the entire shebang and was not pleased. Kinda slushy billing, if you ask me!

[Rekarb]

I"ve gotta get this stuff organized! Here it is and there's another one that uses this and "HLA sequencing"

Ketosis-Prone Diabetes: Dissection of a Heterogeneous Syndrome Using an Immunogenetic and {beta}-Cell Functional Classification, Prospective Analysis, and Clinical Outcomes -- Maldonado et al. 88 (11): 5090 -- Journal of Clinical Endocrinology & Meta (http://jcem.endojournals.org/cgi/content/full/88/11/5090?ijkey=54f9a0f068e661cd69fb8eca8d01f9bd58f47fd 1)

Ketosis-Prone Diabetes: Dissection of a Heterogeneous Syndrome Using an Immunogenetic and ß-Cell Functional Classification, Prospective Analysis, and Clinical Outcomes


Accuracy and Predictive Value of Classification Schemes for Ketosis-Prone Diabetes ? Diabetes Care (http://care.diabetesjournals.org/content/29/12/2575.full.pdf+html)

Accuracy and Predictive Value of
Classification Schemes for Ketosis-Prone
Diabetes

Tell me what you think

Mike

[foxl]

Well this is interesting .. KPD is about as loosely-defined as LADA.

Waddyaknow -- Printed to read later ... and perhaps to share with Endo!

[Ategeler]

So interesting Mike, thanks for sharing. I am glad I went and was pleasantly surprised when I wasn't expected to see many other people besides the doctor I had made the initial appt.with. She did inquire if I was seeing an Opthamologist, Nutritionist etc, but I am very proactive with my health and that was enough for her. She spent a fair amount of time with me and answered the many questions I had regarding my Diabetes. It was only after I was in my car driving home that I realized I forgot to ask about the gene testing! Ugh! There were so many things on my list I forgot to add that to my piece of paper. I am soo bummed.

The good news is that she has ordered more tests. I have only been tested for GAD antibodies that were positive. So she has ordered the other antibody tests, Celiac screening, and a Cortisol test that can pop up in diabetics usually later down the road. I am glad that they are being thorough. I hope to inquire about the gene testing when I follow up about these current labs I am having done.

FYI- I didn't realize that newly diagnosed Type 1 Diabetics should all be screened for Celiac's according to 2009 ADA Guidlines!

She had mentioned also that autoimmune disorders often manifest themselves in the order of Diabetes,Thyroid,Andrenal, respectively (but not always).

Long story short, I did come out with more knowledge than going in which I was pleased about. There is nothing like waiting 4 months for an appt. and leaving without new information! Glad I went.