Well this is an unexpected wrinkle in my diagnosis!
I saw my endo for the first time last week after being diagnosed in early January and receiving care from my PCP. My PCP suspected T1 because I was normal weight, physically active, and lost 15 pounds (from 140 to 125 pounds) in about a month during my excessively thirsty period. My A1C when diagnosed was 13.5 and on the subsequent test I was positive for GAD65 autoimmune antibodies so she confirmed T1.
Three and a half months later I meet with my endo and he suspects T2 instead! He says the GAD test is not reliable, and on top of that I have various indicators for T2, including:
Asians tend to get T2 at lower BMI
BG was not super high
Age profile typical of T2
Anyway the estimate he is giving is 80% likelihood of T2 so I am currently on both metformin and insulin with the plan to gradually decrease the insulin and if I am really T2 then ideally eliminate the insulin. But then if I am really T1 then when my honeymoon is over watch for a rise in BG levels, pretty much like all the PWD have reported that were misdiagnosed as T2 but are really T1.
I would obviously prefer to get off insulin if possible, but it is emotionally a bit strange since I had accepted being T1 and requiring insulin for the rest of my life. So if I really do turn out to be T2 without needing insulin it would almost like a “cure” in my case. Overall I’m a bit skeptical so I am not getting my hopes up too much. So far the metformin has helped keep BG stable, especially the mornings as one would predict.
I have to tell you, your description of your endo raises all sorts of red flags. You were diagnosed with diabetes with an A1c of 13.5, that corresponds to a blood sugar of 350 mg/dl. To call that not high is whacko. And you tested positive for GAD65 and with a blood sugar that high I bet your c-peptide was really low. That is a “confirmed” diagnosis of T1.
And to suggest that you try to stop insulin as a T1 is downright alarming. Stopping insulin when you are T1 places you at risk of DKA and potentially life threatening consequences.
I think it is time to get copies of all your test results and seek out another endo. In a worst case you could bring your positive test results for T1 to a GP and simply have him prescribe your needed medications. That might be better than having a “specialist” in this case.
I’m in complete agreement with Brian on this; I’m not understanding how you could possibly NOT have Type 1 diabetes in light of the test results you listed…
I would be more inclined to trust in what the A1C and autoantibodies test said. Not everybody is diagnosed with a blood glucose of 911. The other thing that is suspect is losing 15 pounds in a month. When the D hit me, I lost 20 pounds in 4 1/2 weeks. My impression of the actual onset of T1 is that it is sudden, violent and impossible to ignore.
Insist that your doctor go with the TREATMENT not the diagnosis that is best for you. It’s all about how YOUR body responds.
I agree with everyone here. That is the screwiest misinterpretation of results I’ve seen in . . . goodness, I don’t know how long.
It isn’t as though you have conflicting indicators that are all over the map. Every one of those test results points to T1 with consistent unanimity. Stopping insulin with the diagnostic picture you have would be—let’s be charitable and just call it “risky”.
All three of those “indicators” are mostly subjective and NOT objective.
If Asians “tend” to get T2, that must mean that “some” tend to get T1. So rather than being lumped into a group, how about being treated as an individual.
BG not super high - See @Brian_BSC’s comment! I’m calling that indicator a bunch of hooey.
Age profile??? Pardon me but, WTF??? If your same data was presented to your endo with a child’s age on the chart, what would the diagnosis be? Age should NOT be a consideration at all when diagnosing T1 v T2.
Finally, don’t be afraid of insulin. It’s a valid tool to manage your condition, don’t assign a negative value to it.
I agree with all the comments made so far. But I want to address the sense of relief that your doctor’s confusing change in diagnosis caused. Diabetes, whether T1 or T2 are both serious and challenging conditions to live with. Because T1D necessitates immediate insulin use does not make it “the worse kind.” Many T2Ds end up on insulin as well and many should be on insulin and its delay causes lots of needless secondary complications.
A correct diagnosis should be your goal. Both T1 and T2 diabetes can be treated well and one can live a happy and long life. Do not despair if you need to continue to take insulin. Insulin is a powerful treatment tool and insulin formulas have improved markedly over the years. Diabetes tech, including insulin infusion pumps and continuous glucose monitors, can help improve the quality of your life.
It’s true that insulin must be used with care and you’ll need to pay closer attention to food and exercise but these are things that most people should pay attention.
Mmmmmm, yeah. That’s what my doctor thought, too. I was age 70. And she treated me as a type 2 on type 2 meds for a year and a half while I had to starve myself to keep my A1c at or below 7.0. I should have been on insulin the whole time.
Thanks for the feedback all, will definitely proceed with caution! I did find this case online: An Unusual Case of Type 1 Diabetes -- or Is It Type 2? which seems to be the same strategy my endo is going for… but I never did get a fasting c-peptide test so I might ask for that.
I’ve been on MDI since my diagnosis and have no problem keeping on as long as needed, just saying if I didn’t need to take insulin anymore, who wouldn’t want that? (OK, not if the alternative is possibly worse, like immunosuppressants or such). Since January I have brought my A1C down to 6.9%.
I have to say the idea of diagnosis by waiting to see if BG rises is a little unnerving - I’d much prefer keeping BG levels good! Does anyone know anything about the reliability of the GAD test?
It seems if a T2 is misdiagnosed as T1 and goes on insulin therapy he or she can successfully manage the disease and never know he or she is really T2, although a T1 misdiagnosed should eventually know he or she is not a T2.
I hope you are a type 2 because that’s what I had been hoping for myself when I was first diagnosed.
I remember my doctor telling me that there is a certain lab test people can get to find out for sure, but that the person cannot be on insulin yet when tested. I can’t remember what the test is called.
Sorry, but a T2 diagnosis is actually a diagnosis of exclusion. You have to exclude all other specific diagnosis to confirm a proper diagnosis of T2. There is not test for T2, it is now thought that T2 is a cluster of perhaps as many as eight separate defects which can occur anywhere along a spectrum. And T2 can present as simply an insulin deficiency, only differentiated from autoimmune T1 by the presence of antibodies. And in the end what T2 really means is “diabetes of unknown cause.”
Hi Kenrick: I have seen it again and again, this deep denial where doctors (even endos) do crazy backflips to deny that all the (substantial) evidence that says that the patient has Type 1 diabetes is not true. Your evidence of Type 1 is substantial, and I agree with others that perhaps a different endo is in order. And please don’t go off of insulin. Your doctor may be in denial, but don’t you be. Best of luck!
I am Type 1 and my highest A1C ever was 8.4, and that was at diagnosis, when my BG’s were running in the 400’s. I had normal labwork done about 8 weeks prior to my diagnosis, and didn’t have any elevated glucose then.
Weird things happen… I would personally find a new endo. GAD is pretty indicitive of T1.
I guess there isn’t much to add here. I agree with all of the people above.
Plus, Joslin Diabetes center even puts T2 nowadays almost immediately on insulin, to keep beta cells active and alive to maintain better BG control. so even if you were T2 (which i highly doubt) i would still stay on MDI for the sake of better control.
Your endo is very weird. i would look for a better one
I’ll just pile on what the others have said here - I would strongly consider seeking out another endo to get another opinion. I can only speak from my own experience and understanding, but I haven’t seen a situation where there was a positive GAD65 and A1C as high as yours, yet a doctor ignores that evidence and uses ethnic and age tendencies as their main diagnostic criteria.
If it’s of any value, since receiving a LADA diagnosis ~ 5 years ago, I’ve seen 6 different endocrinologists. One was a consult with the Mayo clinic, another was a Joslin-affiliate, the others part of a research university’s endo clinic. I mention this because I feel I’ve seen a pretty good cross-section of endocrinologists and while they each had/have their own thoughts on appropriate treatment plans, none of them questioned the T1 diagnosis. As part of this I’ve had a GAD65 test at least three times - they’ve run other antibody and c-peptide tests as well, but always the GAD65. I believe it’s a very reliable test - I have no idea what your endo meant by calling it unreliable.
I don’t recommend seeing 6 different endocrinologists, but I do recommend continuing to seek out a doctor you have full confidence in and can develop a strong rapport with (and then hope they are not part of a research university where they continually move on to other appointments - drats!).
The good news is it appears you have a pretty good PCP - it’s less common to hear a PCP running antibody tests early on. Have you considered returning to get their opinion/recommendation on endo and treatment options?
Thanks, I do like my PCP although she is definitely not a specialist (and admits as much). Also the only pump they will prescribe is medtronic as their office is not trained on anything else, so they are a bit limited beyond basic treatment.
