Ok, I’m going to see the doctor on 30 October. Please help me figure out what I need to ask him. Since I will probably be going off my health insurance next year, I want to use this time to get as much sorted out and done before then.
Firstly, I seem to be on the wrong insulin - although I’m not sure I’m supposed to be on insulin at all. I have asked the doctor for a diagnosis of type, but he doesn’t want to say. He says it won’t make a difference to the treatment, so he just wants to see what happens. He initially diagnosed me as Type 1 (honeymoon period), as I needed insulin, but because of recurring hypos I ended up going off the insulin. I lost 35 pounds shortly after being diagnosed and going on a diabetic diet. I was okay for a couple of months, but started getting really tired and my fasting BG got above 6. I started small doses of the insulin (1 unit in the morning). This progressed to a unit in the morning and another in the evening. Then I had surgery, and needed a lot more insulin for a while. Now I’m taking 1 unit in the morning and 1 in the evening, and am still having hypos.
I’m really frustrated because I want an official diagnosis, and much more set medication. I really dislike having this much uncertainty (and so many hypos).
what’s really hard to say is that you may get neither thing you ask for: an official diagnosis or a “set” medication. I am not sure what a diabetic diet is but if you are restricting your carbohydrates, and your blood sugars are high, you are diabetic.
There is a C-peptide test which will tell doctors how much insulin your body is making on its own. If it is “normal” to “very high” they they may call you a Type 2 diabetic, because your body isn’t using the insulin it is making for some reason. Treatment - oral meds, sometimes insulin, diet, and exercise.
There is a antibody test which will tell doctors if your body is in the process or destroying its own insulin producing cells. There will be a (often slow) degredation and finally the absence of your own insulin. If your c-peptide is low and you have the antibodies then they may call you a Type 1 diabetic because you don’t have enough insulin to survive on your own. Treatment - insulin, diet, and exercise.
The reason your meds may never be “set” is because of the balance among diet and exercise/insulin. My insulin requirements may rise 100% or drop by over 50% on any given day, depending on my meals and my activity level so the only thing constant is my changing needs!
at 2 units per day of 70/30 there isn’t a lot of room for improvement. you would have to take fractional units of a long flat insulin like Lantus and then only correct with a (again fractional unit) of fast acting like Humilog. I think it’s very hard to do. You are in a tough spot and I don’t envy your situation. I would ask the Doc about the Lantus (or equivalent long acting) since you need so very little and it may provide a better background for you.
Joe’s comments are right on. I would tell him (your doctor) that you want a c-peptide and an antibody test. This will clear everything up as far as what type you are. As far as insulin goes using long acting insulin with exercise can be difficult because when you are at a resting heart rate insulin works very well but when you increase you activity level this can affect how fast the insulin is absorbed into your system therefore causing you to go low when you are not expecting this to happen.
If your doctor won’t prescribe those 2 tests I would suggest getting a new doctor. You have a right to know what kind of diabetes you have so that it can be managed properly. I could be going out on a limb here but the treatment for type 1 vs type 2 is very different. Total insulin therapy vs. diet, exercise and pills!!! Oh ya they are the same!!! Diet and exercise should play a roll in everybody’s life. Amongst us diabetics the treatment is not the same.
Often times it can take several tries before one finds a suitable doctor who will give the kind of care that is expected.
While you have insurance, is it possible to switch to another doctor? You didn’t mention if the one you’re seeing is an endo. Doesn’t seem like he is since he’s that unconcerned with diagnosis.
Joe’s suggestion about having an antibody & C-peptide test is what’s needed to determine what meds you may need. If you’re Type 2, oral meds may really help you utliize what insulin you have. Some Type 2s are on insulin also & it helps protect remaining beta cells.
Going on a basal insulin sounds like something worth investigating.
Ask him for the C-peptide and antibody tests as Joe suggested AND
Ask him for a referral to an endocrinologist.
This “it won’t make a difference in the treatment” answer really bugs me and I take it as an indication of ignorance. It’s like saying the treatment for colon cancer is the same as treatment of skin cancer. What nonsense. Although some Type 2’s use insulin it does make a difference what type you are. For one thing, you’re entitled to know if your pancreas is working or not. For another, you’re entitled have some certainty about your medical condition. You’re entitled to know to what extend exercise and diet alone can control your BG. You’re entitled to know just because of the fact that it’s your body, not his. If this doctor doesn’t know what type you are, then tell him to either find out or refer to you someone who can.
Hi Megan,
You have gottern excellent advice. Take everything to heart and go see your doc. We will all be here to help whichever way you find to go/ My best to you.
Hi David. Thanks for the reply. My hypos usually occur when I am sitting at my desk in front of my computer - and I have been there for about 4 hours! No exercise involved in that.
Argh! I’m going crazy! Because I started having hypos again, I didn’t take any insulin last night or this morning. But, lo and behold, it’s 11:20 and, like clockwork, I’m having a hypo.
You may want to discuss with your doctor about taking Lantus and then bolus with Novalog, humalog or Apidra. That way you only use the fast acting insulin when you need it and can really tweak the long acting insulin.
Megan,you take 2 u mixed insulin per day!!! Is that all? And you have hypo,So why your doctor put you on this nothing dose? does he think you are in honey moon,and to prolong its period he put you on this dose? Or I misunderstood?
Hi Sohair! My doctor didn’t put me on this dose - I did! He told me to go off the insulin, and go back on when I needed it. Well, I got really tired and my sugars were getting higher, so I started using it again. I was walking, but that didn’t help, and then I had surgery and couldn’t exercise for three weeks, so I had no choice. I started off at about 3 units twice a day (I went up to five units at one stage - without hypos), and am now back to nothing. I really don’t know what my doctor thinks! The last time I saw him I had been off the insulin for a couple of months, but that was before I started feeling bad.
As far as I can tell, my doctor isn’t an endocrinologist, but his practice is registered as a Centre for Diabetes and Endocrinology. He had to attend training courses to be accredited for that. He’s also well known for being one of the best doctors for diabetes in town. I know he stays up to date with the latest research.
When have your BG started getting higher, how high it was, fasting and 2 hrs after meals? You mentioned type 2 diabetes in your family; it affects normal weight population also. There are many members here who are maintaining BG and HbA1c in normal range watching what they eat. I am not saying you are type 2,but you are strong willed to lose that weight, do exercise and come up with nice recipes.Hope you will never need any medication or insulin. I am following your steps Megan…
I’ve just checked my logs, and the fasting numbers ranged from 6.1(108.9) to 7 (126). I suppose they would have gotten higher if I didn’t start taking the insulin again. I didn’t like having numbers this high - I was told they should be between 4 (72) and 6 (108).
I’ve heard that people are more insulin resistant in the morning, according to Bernstein. Perhaps I should try lowering the carbs in my breakfast from 30g to 15g and see what happens?