Welcome to my life. I now suspect I have MODY, MODY-2 to be precise. There is some evidence that perhaps 2-5% of all diabetics actually have MODY. MODY, which is a genetic condition is something you have from birth, but as you get older your blood sugar control naturally degrades and you can appear to be a t2.
Your doctor wants to test you for LADA/T1 because he needs to rule out that diagnosis before testing for MODY. MODY is a genetic form of diabetes, there are at least 9 forms of MODY, they each have particular genetic variant(s) and symptoms. The form that I think I have is MODY-2, which has the symptoms of a elevated fasting blood sugar and a normal (relatively) glucose tolerance. There is no treatment for MODY-2 except a low carb diet. The other forms of MODY present with impaired glucose tolerance.
The best place to get tested is at Exeter (http://diabetesgenes.org/), Prof. Andrew Hattersley is the worlds expert on MODY and diagnosis of MODY depends critically on a database of identified variants. There are places in the US (AthenaDiagnostics), but they are very expensive. I believe you can get tested for MODY-2 at Exeter for £350.00 (+25%). Much cheaper than the $4000 I’ve see for Athena.
In fact, I’ve been terribly dissappointed in the US resources for MODY. JDRF has stepped out to spearhead US efforts and runs a website (http://monogenicdiabetes.org/) and a Monogenic Diabetes Hotline. I called the hotline, but was told that MODY was just a neonatal condition and that I could not possibly have it and that “NO” they did not have any information on MODY. I think their hotline is really there to raise money. The Kovler Diabetes Center (http://www.kovlerdiabetescenter.org/) is apparently the biggest center for monogenic research, however my attempts to contact them went unanswered. Apparently in the US, MODY is considered (like T1) to be just neonatal and childhood problem. Exeter on the other hand is apparently quite responsive.
MODY is an autosomal dominant, therefore if you have it (and the father doesn’t), your children have a 50% chance of having it. The test for relatives is only £100.00 (+25%) once Exeter has identified any genetic variant and for that price, you could avoid years of misdiagnosis and wasted treatment.
Unfortunately at this time, my requests to have MODY considered as a diagnosis have met with blank stares and comments on my mental problems. I do wish you luck with your diagnosis, your endo sounds like a winner.
You may think this is a bad birthday present. But in fact, finding out exactly what is wrong with you and getting the right treatment can make a world of difference in your life.
