I am just wondering if anyone has any good talking points to help convince your doc to test you for type 1.5.
Hi Andrew!
Are you seeing an endocrinologist or a general practioner? It would be easier (but not necessarily easy) to convince an endo.
How about just telling him that you don’t feel certain about your diagnosis (I’m assuming with Type 2) and that you want to be sure with just some very simple and inexpensive blood tests looking for antibodies? Maybe try to convince him that it could save you the costs and risks of messing with oral therapies when in fact you just need insulin… One blood draw and you could have the answers. Maybe a referral to an academic endocrinology center? Best of luck to you - R
You have rights as a patient - ask for whatever tests you think you need. If its a GP and says “no” find another GP and tell him as he will soon order the simple test then lose business - then change
I have to tell you, my efforts to get properly diagnosed were generally a disaster (at least with my GP). I went about it in a very logical manner.
I was unhappy with my blood sugar control (HbA1c in mid 6s).
I was aggressive with my lifestyle changes, Bernstein diet and fitness program.
Oral medications did not work. Going on and off metformin multiple times never improved my BS control.
I simply requested a proper diagnosis so that I could obtain an effective treatment.
My repeated requests for antibody tests were rebuffed. My repeated requests for a c-peptide test were rebuffed for a year and a half. Finally, I was granted a c-peptide, and it came in low normal, a red flag.
But still my GP refused to perform proper diagnostic tests. Essentially, I was labelled as a T2. The only way to change that would be to lose control of my blood sugar. In fact, my GP thought a HbA1c in the mid 6s was “great control.”
In my view, almost no GP will be competent to “diagnose” T1 or T1.5. T1s are diagnosed in the ER with DKA. If you don’t arrive in the ER with DKA, then you are by definition a T2. You need an endochronologist. That is what I have done.
Even with a specialist, you will be hard pressed to argue for additional tests without some clear argument that it will make a difference in your treatment. You need to be prepared to argue that your current blood sugar control is not satisfactory (after all you have a HbA1c of 5.8) and that the oral medications that typically work on T2s are not working.
In my situation, I am very clear about things. My fasting blood sugar has steadily crept up and as it has approached 140 mg/dl I have realized I am in serious trouble. I have been asking for a basal insulin for going on two years and have been repeatedly denied. I’m sorry I can’t give you a more promising story. You will have to be your own best advocate.
I think it’s important you get good treatment, no matter what type you are or might be.
Do you have a bg meter? You said in some other thread your doc took that away.
Here in the US some insurance decisions are predicated on whether someone is T1 or T2. Don’t know if that’s the case for your system. But in a sense it doesn’t matter what type you are, as long as you are keeping your bg’s in control without starving yourself to death. Do you feel that to be true?
It took switching doctors for me to get the testing I needed. Only in my case I did not have 1.5… I had full on T1 and my original doctor (an internist) was just a complete moron.
I had been on insulin during most a pregnancy, and when I continued taking it afterwards to treat highs (300+, we’re not talking “a little” high) I would actually get YELLED AT by her because I wasn’t giving oral meds “a chance to work” (which in hindsight is total BS - if they were going to make much difference, the meds would have worked regardless of whether I was taking insulin or not). That nonsense went on for 4-5 months before I was able to get an appointment to see an endo, who did antibody testing on my very first appointment. My prior doctor had flat out refused, stating there was just no way I was a T1 and to stop worrying about it. Obviously I didn’t, but looking back I really did present as a typical T1, I just didn’t have the right people around me to see it… my case was heavily biased with “but you were pregnant when you were diagnosed.” Yes, I happened to be pregnant, but I also happened to have a random BG over 500 - that’s not “normal” for GD either. If I hadn’t been self-medicating I’m almost positive I would have ended up in the ER. In some ways maybe I should have - then someone would have realized how wrong they were.
In the US you can order your own tests by using an “ONLINE LAB.” They usually use a free standing local lab to do the blood draw. I don’t know if you can do this in Canada.