I saw the dr this morning and asked about those tests and she doesn’t seem keen on doing them. I am back on Trulicity, but have appts with her next week and the following week for follow ups. I will discuss the tests with her again. Thanks so much for you comments and help.
It turns out the way a lot of us are diagnosed right is by switching doctors. And in my case that is what happened. I ate very healthy, swam 75 laps in a gym pool daily but was overweight, not obese but overweight and I really think they just automatically assumed I was a type 2. I had an uncle that was a type 1 so I asked my GP at the time if I was a type 1 instead and she said no, eventually I was sent to an endo and asked him and he told me no, neither ran any tests even though medications weren’t working well and were making me sick. I was put on a long lasting insulin but my levels still crept up.
It wasn’t until I switched doctors that she sent me to a new endo who tested me right away without me even asking that I was diagnosed right.
Like I said I still don’t know at all if you are, but there are some signs it’s a possibility. It can be very difficult as endos have long waiting periods to see them, but most are better at spotting issues. (But not all endos are good either). But maybe a second opinion or if you can afford to you can privately get a c peptide test done. There are some places out there that aren’t bad at cost, some people here have done that.
I am wondering if you push your doctor about a c peptide test maybe she will do that one, which at least will give you a lot more information. That you would really like to know if you are producing insulin and how much.
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Yes, I will try to encourage her to send me for those tests. No way to change drs. I am in Canada and there are huge numbers of people here who have no dr and my dr, who just came in March, is leaving in Aug. I did see an endo near the beginning of all this, but he is gone now too. Thanks for your help.
Sorry that happened to you. Good thing you have an epipen. I agree with some of the others, you need a c-peptide and some antibody tests to rule out LADA ( Latent auto immune diabetes in adults) It’s very similar to type 1 or an adult form of slow forming type 1. In which case you need insulin. If you are losing weight and have symptoms of diabetes, it’s a good chance you need insulin. Even people with long standing type 2 run out of insulin and need it. The c-peptide tests measures how much insulin you have. It would help control the weight loss. I hope you can get this resolved sooner rather than later. Best of luck to you.
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Thank you so much, Jean. I have my next dr’s appt on Thursday, so will see how that goes. I’ll keep everyone posted.
So, after discussion with my dr, and her doing research, she decided to send me for tests for T1/LADA. I was told it would take 4 to 6 wks for the results to come back as they had to be sent to a larger city and lab.
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That’s a long time. It shouldn’t add more than a day onto it to send it out.
That’s what I thought… that’s what they told me. Hopefully they are wrong and it comes back much quicker. 
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Please remove this post from my thread! Not interested in this kind of nonsense.
I don’t know if I can give you the right and good advice and answer, but I hope you do well!
So, yesterday I received the results of my test:
C Peptide H 2183 325-1090 pmol/L
From my research, I guess this means I do not have type 1, but type 2, and that my body is making too much insulin, but not being able to use it properly. I do not see my dr until July 13… almost 3 weeks away.
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Your c-peptide level is 2x the lab’s upper limit. I agree with you that you are most likely faced with a T2D diagnosis. Or you could be given a “reprieve” with a pre-diabetes diagnosis. If that’s the case, this is often seen by the patient that their situation does not require any further action on their part. I don’t view pre-diabetes as an innocent state. In fact, I think it really should be called “stage-1, T2D.”
The big question now is, what are you willing to do about it? Most people in your situation are not willing to make large changes, like dietary ones, to improve their health. Your progression from optimal metabolic health into T2D was likely undramatic and not perceptible.
In fact, many people in your situation entertain the possibility that this does not require any immediate significant action on their part. Coping with this new rude reality can often mean denying the facts you observe.
Your participation here seems to suggest that you are not typical in this way. I think your most potent tool that you could employ is changing your way of eating to minimize hyperglycemia and glucose variability. That is no small task and not easy to implement. But it can be done and many here have successfully altered their way of eating to tame blood glucose excursions.
I suspect that your doctor will not give you strong advice beyond taking Metformin, eat less, and exercise more. Most doctors believe that T2D progresses no matter what the patient does and inevitably leads to taking insulin (seen as a failure, which it is not) and worse control over time. That means a much larger risk of developing secondary complications, the real cost of diabetes.
While most doctors are not very hopeful with a T2D prognosis, many people who have walked in your shoes are now living without T2D symptoms, taking no diabetes medications, and living with normal blood sugar levels. How can that be?
The Virta Health protocol is one way to alter your current metabolic trajectory. Much of what they counsel can be done on your own without the expense of their program but it does require commitment and tenacity. If I had the resources, I definitely would pay Virta Health to quickly (many months instead of years) see me through this health crisis.
(By the way, I was the one who flagged that previous comment as spam, the one that irritated you and was eventually deleted. I have no connection to Virta Health, other than an awareness of their excellent work.)
Good luck to you! Please continue to update your status.
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Thanks Terry. I have already been diagnosed with diabetes (was tested) about 5 years ago and have already gone through the metformin and three other meds. I am now on Trulicity, which seems to work the best for me. I have a CGM that I watch closely as I do get hypoglycemy at times if I happen to miss my snack or don’t have carbs with a meal. One day a few weeks ago my BG was at 6 and in 20 mins or so it was down to 3.2. That’s how fast it can drop.
However, the sudden loss of weight that I experienced, was the reason I decided to push my dr for this test, and no one had ever told me which diabetes I had. I am as skinny as a rail and probably at least 10 -15 lbs below what my normal weight should be.
Anyway, as I said in my previous post, I will not be able to see my dr until July 13, so I will be anxious to see what she says. I’m thinking insulin will not be on the horizon and I will continue with my Trulicity.
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Reactive hypoglycemia could be the mechanism that drove you into hypoglycemia. This occurs when a meal composed largely of simple carbohydrates elevates your blood sugar to very high levels and your insulin response is delayed and then over-reacts with too much insulin and makes you go hypo.
I think your use of a CGM can help. When you went hypo, was it preceded by a glucose spike? Did you get an alarm to warn you about the impending low?
What do you eat for a typical breakfast? Dinner?
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For years I ate oatmeal for breakfast (drs told me it was good for my heart), but would get hypoglycemia after. Then for a long time I would just have an apple for breakfast, it kept my blood sugar level, but then I developed IBS, so switched to PB and banana on a rice cake. That also seems to keep my blood sugar fairly stable. Lunch is always my hardest meal and I also have food allergies (corn) and sensitivities. Usually either a sandwich with ham/turkey, hotdog, or waffle with ham with small amount of agave syrup. Dinner/supper is almost always rice/potato (yellow), with a veggie and meat. Once again the IBS plays a part in that. I have a snack in the mid afternoon or my blood sugar bottoms out before the evening meal. Often at night (11 - 12) my blood sugar rises, but the other night I had a low again about 11:30. Have candies sitting all through the house and carry them with me.
Yes, my CGM has alarms set. At 4.5 the alarm goes off, and when it gets into the 3s it goes constantly. At 10 it goes off. I have kidney disease and was told to try to keep my sugar under 10.
Anyways, it all keeps me on my toes throughout my day.
It’s my understanding that a healthy glucose metabolism sees insulin released by the pancreas in two phases. The first phase is an immediate release of a significant amount of insulin in response to eating a meal. Then, at a later time, a second phase of insulin is secreted that “cleans up” any glucose that appears from what’s missed by the first phase.
In your case, I’m guessing that the first phase is impaired (probably from system-wide insulin resistance) and the second phase insulin over-responds due to the higher glucose levels sensed.
Have you experimented with eating a breakfast like ham and eggs without toast, potatoes, or rice? Adding in some veggies like peppers or mushrooms won’t drive your post-meal sugars high and risk the reactive hypoglycemia.
You are blessed with access to a CGM. I suggest that you start recording what you eat and pair that with the post-meal blood sugar numbers that follow. Writing stuff down will allow a quicker learning curve. That way you can learn what your body likes, blood sugar-wise.
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Thanks for the advice, Terry. I would love to eat eggs and ham, however, eggs are one my biggest triggers for my IBS and I am allergic to mushrooms, but I know what you are saying. Eggs are are of the main things I miss, I used to eat a lot of eggs. Sigh.
Best to do like you suggest and start writing everything down. The good thing is that I am the cook in my family, so I can make or adjust meals to fit me.
Thanks again for taking the time to help me.
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Ok, so I have been using the Trulicity for a few months now and mostly I was doing ok. It was keeping my blood sugar and nice stable level. However, the couple of weeks, my sugar is going back to what it was doing before, going high at night. Usually starts around 11:30pm or midnight, along with highs at 4am, etc.
On Aug 1 it was my birthday and, because I’ve had a craving for chinese, we ordered in some chinese food and I had a piece of birthday cake. Well, 5 or 6 hours after I ate, my blood sugar was 18.4 and stayed high all night. When it is that high, I can’t even sleep. Now it is high every night again, and running on the high side all day. It’s like everything is messed up again.
So, I have an appt tomorrow afternoon with a new dr, my old new dr has moved on, and she had told me the next step would be insulin. I had numerous meds before trulicity and thought it was doing a good job. Now after a couple of months, it’s not. Still concerned/scared about going to insulin.
Anyone have any comments for me. Should I be getting short term insulin and take it right before my meals? Or a long term insulin. I don’t know… this dr I will be seeing is an experienced dr and I have heard excellent things about him. Just nervous…
Besides the possibility of Reactive Hypoglycemia like @Terry4 has said. Since food seemed to set off this last problem, I am wondering if this is from your IBS issues. Your guts inflame and cause a problem with digestion or its’ possible you are developing gastroparesis?
I had a wild ride with my rescued Dobie as originally she had gut issues and she was put on steroids to control it and then got diabetes. In her case I’m pretty sure the steroids caused the type 1 .
But the problem became she could merrily be going along with always the same food and all of a sudden she would be spiking and require extra insulin and at other times dropping dramatically and fast. I could swear sometimes it felt like she was still trying to make insulin, the steroids played a huge part in her issue. I actually had a Libre on her to monitor her with miao miao for alarms which was a godsend.
But I knew her stomach issues played a huge part in her insulin requirements. If she got loose stools I could guarantee an increase in needs of insulin. When your guts act up I think you don’t digest food as well, until you do. That can also be gastroparesis which unfortunately is common enough in diabetics. Or it can just be an outright IBS issue causing problems. But that poor digestion can cause insulin made or taken, to hit at the wrong time of you actually digesting your food.
Have you tried fasting for a day to see what happens? Or a day with super easy to digest foods and no fats? To see if that helps put you back on track? I don’t know enough about Trulicity to know if it’s safe to change your eating for a day or two.
But I am wondering if you might need to see a specialist, either an endocrinologist who might know more about digestive issues and diabetes or a gastroenterologist.
Thank, Marie. I find your comments quite interesting. Just a bit more background, I have severe asthma and am and have been on steroids for many years. In fact we are surrounded by wildfires on all four sides and engulfed in heavy thick smoke for days now. So I am on more steroids than normal as I struggle to breathe.
I also have GERD and a hiatal hernia, that I have just seen a surgeon about and he is scheduling an upper GI endoscopy followed by a decision to do surgery or not. I constantly have issues after I eat where it feels like my food just sits there in my stomach and doesn’t move for hours or even the next day. The night of my birthday, I had bad acid reflux and I was trying to keep my food from coming up all night. Lots of time I struggle with that. I take digestive enzymes, which seem to help. So maybe that is why my blood sugar starts soaring 5-6 hrs after I’ve eaten. I have the same issue where my BS spikes and then drops, however, the last while it’s been high, and I’m not even having the lows I was. Thanks for sharing that with me, I will be sure to discuss that with the dr tomorrow. I have a CGM, so that is good.
Checked it out online and I have all of the symptoms.
Symptoms
- Heartburn or reflux (backup of stomach contents into the esophagus)
- Nausea.
- Vomiting (in severe cases, this may happen daily)
- Trouble controlling blood sugar.
- Feeling full quickly when eating.
- Abdominal bloating.
- Poor appetite and weight loss.
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