Just passed my 5 month anniversary and still have no answer as to what type.
After starting to experience extreme thirst, excessive urination and losing 40lbs in
about 3 months plus feeling generally crappy I decided it was time to see my doc.
said it sounds like diabetes and ran a full blood panel, 2 days later he called and told me
to come in to the office, never a good sign when they wont give you the results over the phone.
I knew what was coming, but it was still shocking since there is absolutely no history of diabetes
in my family at all.
So at my appointment he said my fasting BS was over 400 and my ketones were off the
chart, and my A1c was 12.8… so he gave me a prescription for Metformin twice a day and
told me to diet and exercise.
The next day I developed a rash on my lower left leg so I figure I"m having an allergic reaction
to the Metformin and return to my Doc. He says I need to go directly to the emergency
room and he calls them to tell them I’m on my way, says its either an infection or a blood clot …
…way to scare the hell out of me and my wife.
In the hospital they put me in ICU with IV’s and an insulin drip, finally getting my BS down and
they tell me the good news that its not a clot but Cellulitis and gave me antibiotics via IV, bad news is I
have Diabetes…DUH ! In walks the Endo and says right now he cant tell me which type I am because I have symptoms of both and only time will tell.
4 days later I’m discharged on Lantus and Humalog plus the Metformin, at that time I was injecting
60 units of lantus in the morning and a bolus of 28 units of Humalog with meals plus they told me to
use a sliding scale.
Fast forward 3 month, I’m feeling better than I have in a very long time, my injections are down to
20 units of Lantus and about 8 Humalog, my A1C 5.7 …life is good.
My endo ordered a C-peptide test and on the phone he was very happy with the results, but at my appointment it was a different story, he said that results should show him what type we’re dealing with,
if the results were on the high end it would be T2, low end T1…well wouldn’t you know it, my results
were exactly in the middle of the range so he couldn’t say either way and now I have to wait until
the end of April to re-run the c-peptide to see if I can get this finally answered.
I believe he’s is personally thinking T1 since he’s pushing me to consider pumping, but wont commit.
in the bottom of my gut I think its T1 but I’m not a doctor, I just want a defniate answer so I can move on.
Welcome! I’m sorry to have to welcome you though. You do seem to fit the pattern of a Type 1 (LADA), though your doctor is correct that there is a lot of overlap in symptoms and early on it can be almost impossible to distinguish. There unfortunately isn’t a definitive test, as it is not unusual to still have c-peptide early in T1 especially LADA. But you can request autoantibody tests if they were not already done (GAD, IA2, islet - ICA). Positives would suggest T1 but, again, are not 100% definitive of type. Ketones are also very suggestive of T1, but they can be seen in some T2s transiently.
I’m sure that others will be by to share their experiences. It’s a terrible time to be in this phase of uncertainty. But as long as the insulin is controlling your bg levels then you are in as good a shape as you can be.
I think you might need a new primary doctor though. As soon as he saw the ketones, he should have sent you to the ER. In the presence of ketones, you need insulin immediately. Sending you home with Met on the first visit after the results is clear-cut malpractice. You should have been sent to the ER then, or at the very least been prescribed insulin. I hate to say that it was a good thing that you had to go back the 2nd day, but it may have saved your life!
I should add that insulin would be required in the presence of high ketones regardless of type. Treating ketosis-prone T2s with insulin is just as important as it is for T1s, though for some T2s the insulin requirement to prevent ketosis reverses spontaneously.
I can understand how frustrating this is, but the good news is that you have a good doctor who wants to figure out what type it is and doesn’t just make assumptions. In the long run, this will help you a lot.
In the meantime, congrats on an awesome A1c!!!
Given that you tested positive for ketones, this suggests type 1, but it is also not definitive, as Tom mentioned.
Also, do you know if your doctor tested for antibodies?
Tom, Kristin
Thanks for your comments, I’m definately learning a lot on this site, more than in the last 5 months.
to answer your question Kristin, I did test positive for ketones in the ER but that was only about 4 days after
the first test from my PCP where he stated that they were off the chart.
the ER also said my potassium level was zero and started feeding me potassium right away as well, but from
what I’m learning, low potassium is expected with what I went through
I agree with Kristen that it is leaning to type 1 or LADA/Type 1.; an additional sign I see is the weight loss. Are you now at or below a healthy weight? I’m not sure why your doctor did a c-peptide and then said wait till April to re-test when the numbers weren’t conclusive without doing antibody testing. I would push for that. Congratulations on getting your numbers down so nicely!
Zoe, I am not at or below a healthy weight unfortunately I could easily stand to lose
another 70 lbs.
the Endo’s reasoning to retest is to see if the number starts dropping or starts increasing
pointing to a diagnosis.
I had thought he ordered an antibody test with the last c-peptide test but nothing was
mentioned about any results
I will definately question him about it
Get used to it. It’s been over five years for me, and I still don’t have a good answer from the doc about exactly what type I’ve got. (I’m antibody free but I’ve got low c-peptide, and family history of both types)
However, it really doesn’t matter if you’re a type 1 or a ketosis prone type 2, insulin is what you need. About the only thing you’d get out of that info right now is maybe getting off the met if you’re a type 1.
It’s such a relief to read your post - I’m just over a month past my own diagnosis, and like you, I’m still unsure of what type I am. I’ve had overlapping symptoms and labwork, and they actually have a post-it note with a ? on the top of my charts at my endo.
Regardless of what type you are, your A1C is inspiring! I hope to make progress like that when I get my next A1C in April.
I was diagnosed with type 1 diabetes in the ER as well in diabetic ketoacidosis. My potassium levels were really low as well. They gave me a drink to raise my potassium that they said would taste horrible, but I LOVED it. So my body was craving it
They gave me the liquid potassium instead of a pill and I thought I was going to lose it
right there, it tasted awful !
I told them if they brought me the liquid stuff again they would be wearing it, needless to say
it was a pill the next time
Ah. Being thin would be one more factor leaning to type 1, but not being thin is not definitive. Yes, that makes sense about the c-peptide changes, but the antibody tests are more definitive (though not 100%) so I would definitely ask about it. Some people say it makes no difference knowing your type as long as you are getting the treatment that works. For me it made all the difference in the world on a lot of levels.
Hi DiverDon: I am so sorry for what you have gone through! But your success in such a short amount of time is so amazing, you should congratulate yourself. To clarify, with the antibody tests (GAD, ICA, IA-2) if a person is antibody positive the person has Type 1 autoimmune diabetes. It is a definitive test. However, about 10-20% of people with T1 are not antibody positive. Good luck to you!
How come you got a funky drink for the potassium deficiency? I got a tube sewn into my neck! I still have the scar. I was just about conscious enough to register that the doctor was really cute and under other circumstances, I would have enjoyed having his face pressed so close to me hahahahaha.
DiverDon - I would press hard for a definitive antibody test. However, it is possible to lose a ton of weight and end up in the ICU with the full DKA experience, and yet test negative for antibodies. But you have the insulin you need, so you don’t really need to stress about Type. As long as you’re getting the right tools to manage your condition - and it sounds like you are. Where it might make a difference is firstly with insurance and secondly, psychologically. But you don’t need to worry about any of that until you know the results of your antibody test. Good luck and congrats on your numbers!
PS From what you describe about your presentation, it might be atypical/Flatbush/idiopathic diabetes/Type 1b/ketosis-prone Type 2 to give it all of its at least five known names. We have a group for that on TuD, where one of the members, Michael Barker, has put together a lot of information.
Well, I wouldn’t become OCD about which type you are
Why? You need both types of Insulin to stay alive right?
Your a Adult Onset Insulin Diabetic…
Keep up the good work getting those lower A1c’s is about all you can do…
i’ve had Dr.'s ask me if I want a Current C Peptide and i said what for? Just to tell me I need to take Both insulins to stay alive? Why waste the $ and go thru the aggravation …?
Give me a Cure instead Please…Even Iselt Cell Transplants every 6mos w/o the Anti rejection drugs that casue cancer and Hives is better than this …
Wow, I’m even more happy about the drink knowing that this is the alternative. I have no idea what you got that, but I’m glad that you could at least focus on the cute doctor
Dennis,
I agree, in the end it doesn’t really matter what type but I guess for my peace of mind
or some kind of closure I guess I need to know what, where, when , how of everything
and this is no different for me…I guess thats just the way I am, not OCD
not yet anyway
