Told not Diabetic anymore after A1c of 5.2

Wow,a bevy of options to say "Thanks and have a nice day." And through proper channels no less! My favorite being

And for final measure, contact the JDRF and let them know that your doctor found a cure for T1, I'm sure they would like to know, this could save them a lot of money.

Too funny, but funny because it's true.

Christina,

How much insulin do you pump to obtain this kind of A1C?

While unusual, it's not completely unheard of.
Well, let me rephrase...It's been misdiagnosed before.
If you're not producing insulin, you aren't going to start, but I actually personally know of a girl who had been misdiagnosed by some of the finest Doctors in the Country.

She was on a pump, the works. When incredibly fluctuating glucose levels lead to further investigations, she was found to be a type 2 and is able to control it via diet, and not inject at all.
Imagine her surprise after 4 years of insulin management to hear that?

I'd still put money on your Doc being pretty awful, as she doesn't sound as though she's suggested back up measure to prove that you're producing insulin, etc.
A simple, 'stop injecting' could obviously potentially kill you.

One other thought. Have you tried looking up reviews of her online?
While this isn't always a done deal, I've found that really bad Doctors often have people so angry at them for their bedside manner, that they flock to review sites to vent, and as such you may feel justified in moving on to read of similar problems from others who have used her.

Rob.

I was wondering what you did to get to 5.2 . I am struggling to be around 7-8. Was it just this Dr. Bernstein book?

Oh and by the way, I moved to Denver today. Did you ever find a endo that was worth it?

It is possible you were misdiagnosed. Most doctors never test for insulin production, and there are a million and one reasons for high blood sugar. It is possible that you never had diabetes if you are currently producing insulin. Infections or internal damage from car accidents can cause damage and impair insulin production, but eventually they might be repaired.

Or in my case, they might not.

That is truly incredible.

That's plain daft!
non diabetics with normal blood glucose levels often have A1c in the 4s. 5s implies imperfect blood glucose control at the very least. I've been in the 5s for several years and my doctor knows I'm diabetic. I'm T2 on diet and minimal medication. Icould probably manage without the medication, but certainly couldn't manage without the low carb diet.
If your doctor won't prescribe for you, can you change doctors? and in the meantime stick to the low carb like glue. You may not need a pump, but if you are a T1, you do need insulin. If you can keep BG numbers down without medication, you are probably not T1 if not, keep a log and take it to whoever is in charge of medical services in your region .
Hana
Hana

I haven't moved there yet... Moving in January...
When I was diagnosed I was in DKA and in a coma for 3 days... I was tested for Insulin production and for antibodies... At that time I had no Insulinproduction left and my antibodies where positive.. Which indicates a diagnosis of Type 1 Diabetes...

I don't think I've been misdiagnosed... but I believe I found a perfect way of managing MY diabetes...

Let me know which endo you are gonna go to and if you like him or her!!!

Currently I am not seeing a doctor at all... Starting to run low on supplies so I am gonna have to make a compromise soon and try to find another doc who will prescribe the things I need!

Exactly... I take about 30 units a day and don't get too many lows either... I just don't understand why these docs think it's so much safer to be at 6 ... when I can be at 4.9 or 5.2 and lead a perfectly normal and healthy life...

Congrats on confirming what an increasing number of people are discovering, unfortunately most of us are not doctors....
good luck with your new Doctor..

Hey Christina,

I hope you're still checking this post! What's going on with you now?

I'm a Type 1 and haven't taken any insulin for 12 days, initially as an experiment but now I'm totally unsure where to go from here. Today my b/s readings have been 4.4, 5.1, 4.3, 4.6. These are great readings. But I still haven't taken any insulin, basal or bolus. It's not that I'm avoiding insulin any more for some reason, but my levels don't really warrant any, or am I missing something? Surely if I take a basal dose I will have a hypo. I rarely need bolus doses as eating VLC. Can you see my dilemma? I'm fully expecting my b/s levels to go up, but they haven't yet and so I don't know what to do.

Any ideas? Anyone?

I don't see how you can be Type 1 if you can go nearly two weeks without insulin and still have normal BG. Type 1 means that you have no natural insulin (or so close to none as makes no difference). That can't be the case if you can go this long and keep your BG down. What piece of this puzzle am I missing?

Please be careful and monitor your BG closely. I would be concerned that you may go into DKA quickly if something changes. The overall goal of any diabetic is to maintain (near) normal BG levels. If you can and choose to do that without insulin then that is fine by me. My two guesses would be you are either honeymooning and still producing some insulin or you have a rare type of diabetes like MODY (Maturity Onset Diabetes of the Young). Some rare forms of diabetes can seem like your insulin production starts and stops abruptly.

Good advice.

RachEH, I am a LADA - latent autoimmune diabetes of the adult. I still make some insulin. It has been three years of eating VLC and exercising religiously. My last A1c was 5.2, but I was 5.1 for a year before that. (Endo says it’s the same number.) I drag myself to the gym, sometimes, and workout until I’m dripping wet, but it works. My diabetes was caught very early on. I had an Endo for another reason, so as soon as the extreme thirst presented, I was given a meter, and later tested for antibodies. So, you are not alone. I make enough to cover the small amount of carbs that I eat, but I am very strict about it.

I feel I'm missing part of the puzzle too. Since I last posted earlier today I have had a b/s reading of 3.9. I just ate my tea early (mange tout, lettuce and chicken curry, no bolus required) and am comfortably back up to 5.8.
I have questioned my diabetic status with my endo on a couple of occasions and he tells me that the GAD antibody tests don't lie and I'm definately a Type 1 diabetic.
What's going on? I feel I should be worried about not taking any insulin for so long now, but my readings don't warrant it, do they? I don't have glucose in my urine, although I do show slight traces of ketones. Obviously I am keeping a sharp eye on that but really, what to do?

Yes, GAD antibodies don’t lie. I don’t remember what the percentage is to quote it, but a number of Type 1s still have some residual pancreatic function. There is a theory that if you go VLC as soon as you can, you might preserve some pancreatic function. My Endo hovered waiting for me to crash in the early months because he thought I wouldn’t stick to the diet.
There are some differences in Type 1s from early childhood and LADA, which is not quite as aggressive in its onset. They are teasing apart the genetics. Child onset of any disease, like Lupus, RA, etc is not exactly like the adult form. Before antibody tests, LADAs got dxed as Type 2s quite often. In fact, they still do. I think LADA is only 10% of Type 1s.
Personally, I know this honeymoon isn’t going to last forever because I also have Hashimoto’s and now, they are testing for Lupus. It’s only a matter of time, but I’ll take what I can get.
I can’t use onion or tomato in a curry, for example, but I substitute a few green onions or shallots. However, rarely go below 75.
I had four times over the limit of GAD antibodies necessary for dx, and my C-Peptide was very low.

No I have not but I would say it is time to get a new doctor it may be a combo of the deit and meds that is keeping you numbers low and after all is that not what we all should work toward

I live here in Denver and I am very very happy with my endo Dr. Claudia Panzer. She has been very supportive of my approach. Based on my CGMS data I expect that my A1C will be in the high 4’s. I know she will be happy, but would never consider calling me non diabetic-- how absurd. I exercise 6 days a week, take about 40 units of insulin per day (basal and bolus), and shoot for normal blood sugars–type 1 for 34 years.

I just left you a recommendation for a great endo in Denver–Dr. Claudia Panzer. I have a few I would steer very clear of as well.

I had a similar experience in August when I had an A1C of 5.4. After anguishing about it for months, I went back and asked for new prescriptions. She quibbled a bit, worrying that I might have "lows," but I insisted and she gave in. I am still worried that I will have to continue pressing for meds, six month checkups,and quarterly A1C's, which my opthomologist wants since I am being treated for Diabetic Macula Edema.