Hi everyone. I’m new to posting, but have been following these forums for a month or so and have found so much helpful information. It’s really great to know there are others going through the ups and downs of this disease like me. I was diagnosed as Type 2 in May of this year and have been struggling to get it under control.
It seems that everything I try, every increase in medication (went from 500mg Metformin to 2000mg in less than a month) and “miracle” diet works at most for a day or two before my BG climbs into the 200 and 300s again.
When I started on a low-carb diet (20-30g a day avg.) about three months ago I saw improvement in BGs for about two weeks, and then another downward spiral to higher and higher glucoses despite eating hardly any carbs.
I’m 28 years old, with a BMI only slightly in the overweight range (25.2), and am otherwise in great health. But I’m running out of ideas, and steam. My father also had this disease, was diagnosed at 30 (when he was at 8% body fat and exercising every day), and his health saw a similar rapid deterioration. He was on insulin in 6 months. Unfortunately he passed last year from what we believe was ketoacidosis (age 53).
I really don’t want to go down the same path, but I’m beginning to feel like I have no choice. Has anyone else experienced something similar? Any guidance would be so appreciated.
Wow, sorry to hear that things work then seem to stop for you. What does Endo have to say? Sure sounds like some insulin may be needed.
I would definitely see an endocrinologist. you might want to get the antibody tests done to make sure you don’t have Type1. Let us know what happens. being in 200 and 300 land feels awful.
and welcome to our community!
I was T2 for more than 10 years before concluding that insulin was the only weapon that would give me the control I wanted. Every case is different. Some people can maintain good control with diet and exercise, some can’t. This is a conversation you should have with your medical team; those numbers are definitely too high.
And you absolutely need to have the diagnostic tests for T1, as Marie says. There is an ingrained habit, widespread in the medical profession, to automatically diagnose as T2 if the person is an adult, without bothering to run the tests. We have many members who were originally misdiagnosed that way. See this post by one of our long time members.
And welcome! You’ve come to the right place. We’re glad you found us. 
I’m not a doctor and even if I were, couldn’t make a diagnosis over the web without a medical exam. But what you describe does sound suspicious of possible type 1. Demand antibody and a c-peptide test. If you aren’t seeing an endo, ask for a referral to one.
I was diagnosed as a type 2 at age 70 with a BMI of 20. To keep my BG within reason I had to cut carbs and calories in addition to being on type 2 meds. I got down to a BMI of 17.6 and still my doctor didn’t want to do the tests or refer me to an endo, though she finally did when I decided I had to eat more carbs and let my A1c rise. I turned out to be a type 1 and was finally put on insulin.
Don’t wait as long as I did. Push for a referral if your doctor doesn’t give you the appropriate tests. Even if it does turn out that you are type 2, insulin may well be the answer. But knowing whether you are type 1 or type 2 can make a difference in insurance coverage and some other aspects of care, so it would be good to know.
Hi, Meg.
I’m so glad you found the forum and had the courage to post! Sounds like you’ve really been working hard already. I’m so sorry both for your loss and for the frustration that comes when our best efforts are not enough. You are doing all the right things. Well done also for reaching out.
I know what it’s like to have lost a parent (my mother) to diabetes. She went low in the night. It is a scary thing to walk in the footsteps of parents we’ve lost with the same disease. I love your perseverance in not wanting your story to be the same as your father’s. You were determined enough to reach out here–even after multiple frustrations. That takes courage. Your story does not have to be (and I suspect will not be) his.
I would echo what everyone else has already said here. Ask for antibody testing. I asked for it this year when they wanted to diagnose me as having “pre-diabetes” after my gestational diabetes never resolved. I wasn’t satisfied with that and requested testing over against my NP’s wishes. So, be prepared to fight for it if you have to. Mine came back positive for GAD antibodies. Sounds like it’s very possible given your history and that of your father’s that is a distinct possibility for you.
Regardless, if you are positive for antibodies at all, you are not considered to have Type 2 (as you already know). And if you do not have type 2, you might qualify through insurance for a CGM (Continuous glucose monitor). Unfortunately, insurance often will not approve them for a diagnosis of Type 2. But it could be an invaluable resource for you as you reign in that A1C.
Either way, discussing the option of insulin sounds really important. So glad you reached out!
I hesitate to ask what may be a common sense/silly question, but are you eating enough fat? I’m assuming you’ve read Dr. Bernstein’s book. Otherwise, I’d echo what everyone else is saying and check with your doctor.
If you are on 20-30g for 3 mths and still have high BG, it sounds like you need insulin, I would get to a Dr ASAP
Meg, these are dangerous BGs, that will also drain you of energy, and endanger your health and maybe your life. I will repeat what others have said: If you are not able to bring therm down after 3 months of good diet, then you need insulin. If you are already on a good, healthy diet, and with reasonable exercise, and you are still in the 200-300, then insulin is the next frontier, and WILL bring you under control. To a degree it does not matter if you are a T1 or a T2 right now - you need insulin right away.
Do you have a good GP? Do you have an endocrinologist?
I hope you schedule an appt really soon. At this stage insulin can and will save your life. Feel free to PM if you want to talk directly. I think we are all worried about you right now.
That doesn’t sound like Type 2 at all, for you or your father. I was diagnosed Type 2 in similar circumstances, but later re-diagnosed as Type 1. It’s important to ask for antibody testing, c-peptide in the context of an OGTT, and an appointment with an endo. If you were Type 2 and eating less than 30g of carbs a day, there doesn’t seem any reasonable way for your BG to be in the 300s.
It sounds like your body is converting a lot of the protein you’re eating into glucose and that is likely what is spiking. But that is a classic Type 1 problem, and is very rare in Type 2s unless beta cell function has declined to non-existent. You need to seek help from a specialist immediately: there are many types of diabetes, and you don’t sound like you have the “classic” Type 2 presentation.
Yes; I had a similar experience and did Paleo diet for almost 3 years. It worked for about two years, then I started going gradually higher to 300s with Invokana and Metformin. I had to start insulin last October. I am now doinb much better with Tresiba and Novolog. I believe I don’t make enough insulin and as I am getting older I have less and less. I believe I now must take insulin to keep my blood sugar 100-200 max…
Metformin only? I started with that went up to 2000 and then started Glipizide. Been in the low 6 percent range since then.
I would agree with some of the others on this thread. I was initially diagnosed with Type 2, but after a year of struggling with it went to a proper endocrinologist and after tests determined that I was Type 1. I generally follow the type of diet you describe and for me I still need insulin to cover the few carbs I eat as well as part of the protein. Good luck!
I have to tell you, being diagnosed as Type 2 really only means that you have diabetes “of unknown cause.” If you don’t respond to treatments that regularly work in managing T2 that is a big red flag. You may well have Type 1 diabetes or another form (such as MODY) and that may well be what your father had.
As others have said, the right thing to do is see an endocrinologist. Sometimes it can take months to get an appointment with an endo. One way of getting a quick appointment is to call and ask if there is a waiting list. Some patients cancel their appointments and you can sometimes get in to see the endo in just a few days.
Thank you all so much for the response. I’ve actually been trying to get in with an endo for a couple of weeks but can’t seem to get a call back. I caved and went to Urgent Care after two weeks of throwing up often and having near constant tingling in my legs at night. They wouldn’t give me any insulin, only more glyburide (I failed to mention my doctor also prescribed some glyburide about two months ago to no avail). I was finally able to see a nurse practitioner at my clinic who asked if I was ready for insulin. She’s prescribed me 10u of Lantus to start. Still trying to get in with and endo to have the tests done, but I can say the Lantus has already made a world of difference: fasting glucose below 100 this morning when they’ve been above 200/250 for a month.
Hopefully this is a turning point for me. I have a suspicion I might be Type 1 as well, so I’m going to press to get in to an endo. Thank you all for your advice! I’ll keep you updated.
I took glyburide for more than 10 years and it was highly effective—in the beginning. If it did little or nothing for you, that’s one more reason to suspect T1. The evidence seems to be accumulating.
Good luck getting in to see an endo. That’s really who you need to see. As someone said earlier, don’t neglect to get on the list in case there is a cancellation.
What a WONDERFUL change, this is great!
At least it gives you a little room to breathe, so you don’t spend every hour high. Don’t stop there though:-) You may well need bolus insulin as well.
do you know a malpractice solicitor? it sounds like you were DKA, did they test for ketones and blood pH?
so glad you got the insulin, you are going to feel a lot better
it just occurs to me to mention that, for some reason, endo practices appear to be satisfied with fairly poor BG management. It seems that, for them, being in the 140-150 range a lot of the time is OK. it seems that, for many of us here, we aim to be quite a bit lower/ close to a normal BG’s trace.
It does not mean we succeed of course:-)
Lots of really good comments from people who have been there a lot longer than I have. I was diagnosed with type 2 last spring, although I suppose there is some room for doubt (I was in DKA) about whether I’m type 1 or 2. I was sent home from the hospital with long and short insulin, and have since removed the bolus and been controlling with just Lantus, Metformin, and diet (between 50-100 carbs a day). With the insulin, my last two A1Cs have been 5.7 and 5.8.
For now, with the success of what I’m doing, I’m not sure it matters whether I have type 1 or 2, but others here may well correct me if I’m mistaken on that. What’s important to me is keeping my A1C low and not having any hypo events. So far, I’ve had none.