I recently joined the forum back in April after being diagnosed. I was told I was T1, had DKA and immediately started on insulin. Last week I was finally sent to get my blood work done to determine my type. I am now told I am T2. I have been doing well managing. After being I. The 400’s in the hospital I have made many changes and my BG is averaging about 93 or less, except for the occasional high. My endo went over my results with me yesterday. When I was in the hospital, my A1c was 10.9. My new A1c is 4.6. All of my other numbers came back beyond phenomenonal. In fact, my endo said that you can’t even tell that I am diabetic because they are so perfect. My tests also showed that I am still making insulin. My endo made some changes yesterday. I am now off of both my short and long acting insulin, I will continue with Metformin, my lisinopril, vascepa and atorvastatin have also been lowered. I only have to take my Vitamin D every other day. I am going to keep my diet and exercise the same as it is my routine now and it works for me. If my numbers starts to stay consistently above 150, I will prob go back on my Tresiba or possibly be put on Victoza. These past few months have been draining not knowing some very important information. Either way, I am diabetic but I will just continue to make myself a better “me” everyday. Just trying to regroup from being so emotionally drained. Thanks to everyone who has helped with this journey.
Welcome to the TuD forum. Sorry your introduction to us is due to a diabetes diagnosis. I have a few questions, if you don’t mind. Did your endo order any antibody tests? These are tests to detect an autoimmune attack on the pancreas. There are several antibody tests, maybe six, and not every T1D will test positive on all of them. Did you have a c-peptide test on your blood draw? The c-peptide is a measure of how much insulin your pancreas is currently producing.
The only reason I’m asking these questions is doctors can sometimes get the diagnosis wrong, even if it’s the second diagnosis as is your case. @Melitta has written a great deal about the misdiagnosis of adults as T2D when they’re really T1D. I’m not saying that’s your situation but Melitta’s writing on the topic answers a lot of questions. Here’s a link to one of Melitta’s posts:
Here’s another post by @Melitta that is packed with good info:
The C peptide was ordered along with GAD. I may still be in limbo. Lol. The endo said that everything leans towards T2 now despite losing weight rapidly and suffering from major fatigue that I had since battling the flu. I feel like people on here have a better grasp of what is really going on and this forum has greatly helped me over the past few months.
Hi: IMO, your signs and symptoms point more to Type 1 than Type 2. DKA and rapid unexplained weight loss are classic signs of Type 1 diabetes. Unfortunately, doctors see an adult and think Type 2, but that is a dangerous assumption. Also, I would encourage you to get the full suite of autoantibody tests, not just GAD, as a small but significant percentage of people will be GAD negative but positive for one of the other autoantibodies. I list the antibodies in the first blog that was linked to above (my top ten tips). Best of luck to you!
Along with all the other new things you have to think about, keep an eye on your potassium; ACE inhibitors such as Lisinopril can sometimes cause it to become elevated. Doesn’t usually matter much unless, like me, it’s high to begin with. Then it can push you over the edge, as it did me. Odds are this won’t be an issue for you, but it’s something to remember.
I’m glad you’re doing so very well but I’m puzzled. You started treatment and have had phenomenally good results and as a result your doctor has decided to change your treatment. Have you been experiencing many lows? Do you hate needles and therefore, stress out at having to take insulin? If your insulin regime hasn’t caused any problems why switch right now?
I’d be wary of not returning to insulin until your numbers are regularly above 150. There is a world of difference between an A1c of about 7 and an A1c below or around 5. Certainly if your next A1c is above 6.2 or 6.5, you might consider going back on insulin then. It really is the best medicine as I was told in the ER when I was diagnosed and you know it works for you.
Best,
Maurie
The progression of Type 1 in adults is in fits and starts in many cases. It was definitely true in my case. In a way (but I know there are some who may disagree), it doesn’t matter what they call you. If you need insulin, you need insulin.
You’re on the right track with testing and (if need be) complaining. You and your doctor should be concerned with YOUR treatment, not the treatment for Type 1 or Type 2. As long as you treat what’s happening, the only thing they should call you is healthy.
Amen. Amen twice. Amen three times.
I feel puzzled too. Needles don’t bother me. I was going low everyday before lunch, so my units were lowered. I really didn’t expect to be taken off insulin all together. I had always been told being on insulin is the best way to keep things managed. I mean, if it is helping keep my BG in good range, why get rid of it.
With all the marvelous advances in medicine that keep happening, insulin is still the most powerful weapon in the arsenal, hands down.
It’s great you are doing better. I suspect more T2’s start off with autoimmune attacks than most people realize. By the time they get tested the main attack(s) which have done the damage are gone.
Its good to hear you are planning to keep up with the diet and exercise. You will have about a 2 to 1 better chance of limiting diabetic progression with the diet/exercise than with metformin according to this study REDUCTION IN THE INCIDENCE OF TYPE 2 DIABETES WITH LIFESTYLE INTERVENTION OR METFORMIN - PMC.
I would second some of the other posters recommendation to stay on insulin.
The main issue T2’s have which needs to be addressed head-on are meal time sugar spikes. Metformin is a complete failure in addressing this need. Only a fast acting insulin can address this. In fact metformin’s main action is to limit glucose production by the liver which keeps the pancreas working overtime in a phase 2 state. If you are T1.5 LADA, its also believed the autoimmune attack happens during beta cell secretion which metformin promotes. In the long run over 70% of T2’s taking metformin are not even hitting a 7.0 A1c. Overall its pretty much a failure. Additionally, several recent studies are showing a very high correlation between dementia and metformin users. The bottom line is metofrmin’s risk/reward proposition needs to be carefully weighed.
The best insulin for T2s to address the meal time spike is afrezza since it mimics phase 1 pancreatic release, shuts off liver glucose release and gets in and out just like naturally released insulin. It also does not contain all the chemical additives. If you can’t get afrezza another analog like novalog/humalog would be the way to go. But they are analogs and they don’t mimic natural pancreatic insulin release.
I would continue to closely monitor. If you don’t have a CGM I like the Abbott Libre. The sensors won’t cost much more than the test strips if you are testing often and the app to read the sensor can be downloaded for free.
IMO, things like Victoza’s risk really out weighs the reward to the point the FDA has a site to report it along with other meds like Januvia, ketoacidosis from Invokana or Jardiance, and pancreatitis or cancers after years of taking Januvia, Onglyza, Byetta or Victoza. For some reason doctors are not reporting issues being seen but its a mess.
" MedWatch Online Voluntary Reporting Form
I was diagnosed in nearly the same way: 400 fasting, A1C 10.7, massive weight loss and fatigue. I went on Atkins, got my A1C down to 5.0 and everyone said “you don’t have diabetes anymore”. Six years later and I am on an insulin pump. When I was finally tested for GAD antibodies earlier this year, they weren’t high enough to be positive.
It was a HUGE struggle to get insulin when I needed it. No doctor was willing to prescribe it to me. They all thought that my levels were fine even though they were much higher than 150. 
So on one hand CONGRATULATIONS! 
You are doing an amazing job, I am sure you have put in a ton of work, and it’s great to see it pay off. On the other, I hope you’ll keep testing and know that if you do go back on insulin to maintain your hard work, that isn’t failure or a reflection upon you.
Hi Lindszimmie: You have already been in DKA. If I were in your shoes, I would be very concerned about coming off of insulin and therefore being in danger of DKA again. Again, IMO, your signs/symptoms sound more like Type 1 diabetes, and most people with adult-onset Type 1 have a “honeymoon period.” I would be very cautious.
Metformin does not cause the beta cells to secrete insulin. Sulfonylureas are the class of drugs that cause the beta cells to pump out more insulin, and sulfonylureas are contraindicated in Type 1 diabetes.
Melitta - metformin’s main action is to limit glucose production by the liver. Most T2s have lost the robust phase 1 release to signal the liver so metformin provides some benefit here. However, then the pancreas will keep on chugging working overtime in a phase 2 mode trying to get the meal time spike down which typically takes a long long time in a T2. The pancreas will naturally stay in a phase 2 state while the average person is 100+. So metformin indirectly keeps the pancreas working overtime trying to get the BG down since it does not address the main issue which is the meal time spike. Now sulfonylureas directly affects the pancreas to get it to release more insulin but since the T2 has lost phase 1 liver signalling the pancreas is having to deal with meal time glucose and liver glucose.
What we do know is in the long run none of the T2 meds work well and the PWDs end up in a bad state with huge micro-vascular damage before they are put on insulin. How many PWDs die from MVD heart attacks?
Back in the 1950’s T2s were not treated early because insulin was viewed as dangerous. When orinase hit the market it was seen as a miracle as it squeezed the pancreas to produce more insulin not knowing it caused all sorts of heart damage and the PWDs ended up on insulin anyway if they didn’t die from a heart attack. I suspect most of the current T2 meds will go the way of avandia and orinase causing all kinds of damage along the way.
I get your general point, but metformin has been around longer than most meds and has been shown to be quite safe. Many Type 1s are even taking it now to help with insulin resistance and DP. But, more seriously, the idea that metformin “indirectly keeps the pancreas working overtime” is just wrong on the face of it. It may not help with bringing down mealtime spikes, but that doesn’t mean it makes it harder to deal with. It does not (the action is such that it has no bearing on beta cell production of insulin at any time).
The biggest issue with Metformin for Type 2s in this culture is that it often isn’t strong enough therapy. I understand completely what you’re saying: many or most Type 2s will eventually need insulin to control their BGs, and metformin won’t cut it. However, Metformin has positive effects, almost no serious side effects, and even has some nice off-label benefits for most diabetics. And, don’t overstate the case: there are Type 2s for whom a combination of diet, exercise, and Metformin works to control their blood sugars for decades. Not all, but they certainly exist.
David - great discussion. If my post-dinner BG is 250 and it takes 12 hours to get me back to 110, my pancreas has been working all night chugging like the little engine that could, working overtime never getting back to the fasting state. In a non-diabetic my spike never goes over 130 and I am back to about 83 two hours later and I am back in fasting state, slowly pulsing. Those are just the numbers and how it is. With early insulin intervention we can get the PWD back to the fasting state and resting period and that is why they often see beta cell improvement.
But it gets worse because as a PWD my A1c says 7 and my FB is 110 and my doctor says I am doing great. Mean while I was incurring hours and hours of MVD and my beta cells never got a resting period so over time things get progressively worse.
As far as metformin being safe. Thats the great debate emerging. MRIs show increased brain plaque of metformin users which is leading to dementia. There are a number of good research papers on why. Recently there was a study done to show metformin was safe. Here is the summary - Long-term Metformin Use 'Has No Cognitive Impact' I have seen some numbers quoting 50% of metfromin users are now developing dementia. I can’t confirm if thats correct but the MRIs don’t lie.
Is it safer than avandia and orinase, it clearly appears to be. Is it safer than Victoza, Trulicity and the rest of the T2 meds? It sure seems to be as long term most of them appear very toxic. Is the question safe or less damaging or time?
Now, believe what you want and again its a risk/reward proposition. However, when a group is paid to prove metfromin is safe and then did not provide the MRI scans to prove it, it makes you wonder. I would have thought the first thing which would have been done on each PWD is to take the baseline MRI, just saying. Moreover what are those scans going to show at the 20yr mark?
What we do know is in 70%+ of T2s its a failure at hitting a 7.0 A1c which is and average BG of 154. We know a couple hours at 140 cause MVD. How many metformin users are failing to meet an A1c of 5.5, maybe 90%+? Not good.
Metformin doesn’t stimulate the pancreas to produce more insulin. Saying that it “indirectly” makes the pancreas work better is misleading, particularly to newbies. By that logic, so do exercise and fasting. That’s not what is generally meant when discussing the action of a medication.
You are correct. Metformin decreases hepatic glucose production, decreases intestinal absorption of glucose, and improves insulin sensitivity by increasing peripheral glucose uptake and utilization. Unfortuately it no longer helps me with insulin sensitivity or glucose control but I remain on it for other health benefits it provides. I have been on insulin pump for 8 years and diabetic 30 years type 1.5
And a rather nice side effect is that it significantly lowers the risk of certain cancers, esp. in women.