So, despite being antibody positive, having presented in DKA, and making almost no insulin of my own, my doctors are still finding new and creative ways to throw me out of the T1 club.
At my latest appointment this week, my obstetrician said she thinks of me as ‘somewhere between T1 and 2’.
But I’m antibody positive, I reminded her. Isn’t that the gold standard for autoimmune diabetes?
Well, 10% of those tests are false positives, she replied. (Cool! So if the conclusion isn’t what you like, cast doubt on the data.)
Second reason she gave? Aged 38 at dx. ‘It’s really rare to be dx T1 at that age.’
Really? At that point, I wished I could produce as evidence Zoe, Gerri and everyone else dx’d at an even more venerable vintage.
Finally came the clincher. ‘Your blood sugars are too stable. Real T1s always have huge fluctuations in their blood sugar.’
This is because I test 20 times a day and try to avoid eating more than 10g of carb in one sitting!!!
Did you tell her to stick to her own specialty? (I can think of a more blunt way to say that but it’s probably not allowed on TuD! Use your imagination)
Did you tell her that it is now known (said with strong emphasis to imply - get with it, woman!) that more Type 1’s are diagnosed as adults than as children? (Melitta nicely posted stats about this but since she did it both with and without LADA’s it totally left my brain - do a search- I should do the same and then write it down!).
Did you tell her exactly what you said about your stable blood sugars? (though in fairness, not all of us could achieve this result)?
Oh, never mind, ignorance like that isn’t worth the effort
Now about that “venerable vintage” thing…ok, I guess fine aged wine is not the worst thing to be compared to.
I hope she knows more about delivering babies than she does diabetes! You should make up a little card with the flatliners address on and tell her to take a look at what real T1s can do.
“Your sugars are too stable”? That’s hilarious (sorry).
Um… is everyone with T1 automatically expected to fail in control? Wow, if I were a medical person like her, I’d be asking you to lecture my patients, to write a book, and to make an example of you.
Sheesh! Well if she can’t find it in her to congratulate you, I can! Well done!!!
That is pretty bad. I like Zoe’s comment, and it is generally true. I had an ENT one time who thought he was an allergist. Ran all kinds of test–I was allergic to everything, etc. When I went to a real allergist, he actually laughed at the diagnosis, so I ignored it. Never had a problem. Your OB really has no understanding of D, and it is a reall sin for her to make conclusions like that.
Oh, I should have added - my OB specializes in diabetic pregnancies so she should know better! She has had more than 500 patients and I’m the first she’s ever had to tell to ‘please eat more carbs’. My meter average is 5.2 atm and she said she’d never had a T1 have that low a meter average before. Not to blow my own horn or anything but duh, can’t you see the connection between that and low carb?
Maybe you could offer to mentor other diabetic moms & show this specialist what can be achieved. Man, what I’d do is hand out my number to moms in the waiting room.
Also sad how in denial docs insist on being about low carb. Mine puts his head in the sand & encourages me to eat more carbs.
Well, the others gave you serious responses, but how about this Lila? Let’s start the Fake Type 1s Club! I’m with you! We meet the definition of being a Type 1, but we are FAKES! (The only reason that I was given that I could not be Type 1 was I was too old at age 35. I am still too old, but that is another matter.) I bet Zoe, Gerri, Susi, et al will join us.
Did you say that this person is an obstretrician? He or she is not an expert on diabetes and you really need to consult an endocrinologist on this one!
Your second reason - I dare not write what I thought at that one. It would be rude! I was presenting with symptoms of diabetes for 10 years (accused of drinking alcohol in hospital at 3am! Nearest shop 2 miles away. Not even thinking about alcohol as I had just had stomach surgery!) and then when they were about to discharge me they told me that I was diabetes Type 2 and kept me in for another two weeks. I was 41!
About 8 months later I went down with a chest infection and DKA - and was asked why I had not been taking my insulin? Er, because I am type 2 and it had not been prescribed. And they said, no, you are type 1. Doctors make presumptions that you are type 2 because of your age, but it is soooooo not true!
Thank God your sugars are stable! I wish mine were! Part of the reason why you are flat lining is that you are so stringent on your carb consumption and perhaps a bit too much of the insulin or over sensitivity (my problem) to the insulin used.
I share your frustration!
There is a type of diabetes about which I know very little - called LADA. Perhaps you could look that one up and see if that matches your patterns.
I feel your pain. I am learning that unfortunately some doctors are not that educated when it comes to diabetes. It really is mindboggling. I am trying to post a discussion now about how I am pretty sure I am a 1.5 but my doctor won’t test me for the same reasons you gave, as well as the fact that I am overweight.
That is the problem with likelyhood. It is true that the likelyhood of developing T1 is very high below the age of 17. But the rest of the likelyhood is distributed accross all of the following ages. Thus there are still a lot of people developing T1 at higher ages.
Really bothersome is the fact that your result of the antibody test is disputed. It is true that these test know false positives and false negatives. But again the likelyhood is not that high. With certainty your type can not be derrived from your blood glucose flatlining. The Joslin hospital found that many good controlled T1 have preserved residual beta cells. To me it is quite obvious that the later you will be diagnosed the less aggressive the immune reaction has been. Thus the likelyhood of preserving beta cells must be higher. Thus the likelyhood of better glucose control in this group should be higher. We should also not forget that your diagnosis was last year. It is known that people diagnosed later in life have often a much longer honeymoon phase and one year is a pretty normal timeframe for all T1’s.
If it makes you feel any better… with my most recent “official lab” bloodwork, my fasting bg is 92 and A1C is 5.9. According to my insurance company’s free screening through the workplace, that puts me at “low to medium risk” for diabetes.
Of course, I wasn’t diagnosed with T1 either. Back then, there was no such thing, it was “juvenile diabetes”.
And half the time my doc puts me down as “250.00”.
I would not take it as a personal affront that you are doing such a good job that they refuse to classify you with the “bad type” of diabetes. Really, that’s the way most of the world sees the T1/T2 distinction.
Now, if your classification is stopping from getting you medical care that you think you need, that’s a different issue.
Bummer. I’ve had the problem with the endo not eager about giving me insulin even though I’ve tested positive for GAD because, “Your numbers are pretty good. Why would you want to go on insulin?” My wife couldn’t believe it and restated, because I already had, that my control was decent because I was eating <30 carbs a day. Even so, my numbers are slowly creeping back up.
How can so many Dr’s, including endo’s, not seem to know the information and studies that we find?
Lila, I feel your discouragement, but would try to take it as a compliment. Your OB is likely poorly educated on diabetes with dated information. I don’t expect the general public to have much understanding of diabetes. But for some reason I expect the medical community (especially doctors) to have some knowledge of diabetes. Heck I would be happy if the medical community didn’t say anything rather than saying something wrong “trying to look smart” when they really don’t know much. I bet your OB has never met a dedicated diabetic like you.
Nowadays if the medical community (especially doctors) solicits innacurate diabetes information to me I pounce. Last time I was at my eye doctor he asked me the usual questions. Any eye problems? A1C? etc. I told him my A1C was in the 5’s (like yours). The doctor responded with something like, thats great! and if you get your A1C even lower you will be cured. I cuckled out loud and told him that no matter how low I got my A1C I would not be cured. A lower A1C is not going to make my pancreas start making insulin again.
Its a real eye opener getting a comment like this from a medical doctor. I bet that from his standpoint, hyperglycemia (from any type of diabetes) causes same/very similar eye damage which he treats in a very similar fashion. He knows what he needs to know for his branch of medicine. The doctor quickly said that I was right and a lower A1C would not be a cure and we moved on. I just hope I taught him something that he might remember.
