Having trouble with diagnosis


P.S. KW13, I agree with many of the other responses/comments. Don’t be afraid to test yourself. This will help you either rule out or confirm early diabetic progression.
I just want to emphasize how important EARLY insulin/diet therapy is for type 1 diabetics. The earlier you begin therapy, if you are diabetic, the better for long-term preservation of normal or near-normal beta-cell function.
If you can find an excellent MD who understands what I wrote, for example, that would be great. But it is very unlikely. The only one that is definitely qualified is Bernstein – you could contact his office for details. I can tell you that it will be an expensive exercise, and that he does not work with any insurance at all. All expenses would have to be paid out-of-pocket by you. But you will be in very good hands if you can afford it.
But even Bernstein himself greatly encourages self-therapy, self-testing, etc. If you want any help interpreting home OGTT results I would be happy to offer my opinion about readings. I will try to monitor this blog thread for the next week or two.


I think it’s definitely worth checking other issues and not necessarily focusing on DM. Unintentional weight loss workup should include a full questioning, physical examination, extensive lab tests, chest ,abdominal and gyne imaging, and endoscopies if still relevant and necessary.


BG readings at 0, 30, 60, 90, 120, 150, 180 minutes after eating a dozen Swedish fish in five minutes might produce interesting data.



I appreciate the suggestions and will take them into consideration. Thanks for taking the time to write! Hopefully, will get some clarity this week as test results come back.


C peptide levels are good to check. Full hormone check also. I know of the gaba hormone, there are some others. That would be more definitive of diabetes. Sugars that are around 150, that could possibly be reversed because it’s so early. Diet I mean. It’s possible, or at least in the realm of believe. GAPS diet is one that claims is possible. Be careful of “starvation” ketones in the urine. They’re the opposite of diabetic ketoacidosis. You can have ketones in urine without sugars being high, due to not eating enough. Perhaps a cardiologist. But I’m not really sure. Hope you’re okay.


KW13, banter on this thread seems to have tapered off. I hope this is due to a better resolution in your case, with T1DM being eliminated. In case not, and you are still following posts, I should have mentioned something earlier.
That is, in any diabetic (e.g. T1DM, T2DM, most form of monogenic/MODY diabetes) eventual clinical diagnosis will only occur once the GSIS (glucose-stimulated insulin secretion) reaches a threshold of 20% (of normal, non-diabetic magnitude). At this time the remaining beta-cell population will lose its ability to manufacture and “store” insulin – the form of storage is known as “insulin granulation”.
My point is, for you or anyone else that might be in a type-1 prediabetic state the GSIS would be > 20% but < 100%. This preclinical degenerative phase will typically last for years, even in a juvenile T1D but certainly in an adult (i.e LADA). During this phase the beta-cell population might go down, and then recover (i.e. go up) for a short time, and then progress with more cell death again. Even in fully mature T1DM there are small bursts of beta-cell regeneration.
Almost no endocrinologist or other MD is likely to have the knowledge to detect this prediabetic state, and the standard (ADA) guidelines will prevent diagnosis of the prediabetic state for sure. Very few MDs will deviate from these guidelines. The guidelines protect them (from legal liability), but do so in conflict with your interests if you are prediabetic. And the correct therapy following diagnosis would include insulin and a very-low-carb diet. An MD would be prescribing insulin “off-label”, exposing himself to great (legal) risk in the event of a serious misapplication of the therapy.
If you have been diagnosed with a non-diabetic cause of your reported symptoms I would be very curious to learn what this diagnosis is. But the combination of your symptoms sure does sound consistent with a type-1 prediabetic status to me. That does not mean it is diabetes – it is just that you stand to lose a lot if it is and you wait for overt diabetes (loss of insulin granulation) to begin treatment.
I wish you best luck.


P.S. With regard to “normal” C-peptide levels, without knowing the actual figures and the pre-test preparation (e.g. meals and timing), a level above that which is normally diagnostic of overt diabetes will not imply that the patient is not in the pre-diabetic state.
The lab ranges will be very conservative, meaning that they are designed to minimize a false-positive diagnosis for OVERT T1DM. Typically preparation (pre-test instruction regarding meals) is grossly inadequate for good reliability. As well, the lab “normal” ranges are designed for those on typical diets (read “lots of carb’s”) which is also a confounder.
I am a diabetic (HNF1-alpha monogenic) but have 40% GSIS – maybe even 50%. I had to self-diagnose. C-peptide testing would have not been useful in diagnosis, and would have been considered somewhat low but normal. I still have insulin granulation, and will for the rest of my life (my diabetes is NOT progressive – it is completely stable, purely a result of low expression of insulin-related genes in the beta cell, and small but otherwise normal beta cells). A prediabetic type-1 could still have as much insulin-secretory capacity as do I, or even more, but will tend to be much more unstable as the autoantibodies wax and wane in their response to beta-cell activity.
Having been diabetic since birth, for over 50 years, before self-diagnosing and many years later having one and a half days of physical testing specifically for the complications of diabetes, there is no question that I am diabetic and have suffered the consequences of late diagnosis. The HNF1-alpha gene mutations of the familial type of diabetes I have were not even ID’d until the 1990s. And there is, to this day, no realistic possibility that I could have been diagnosed originally by an MD rather than by myself.
I was first tipped off by a HbA1c reading of 5.7% (while fit and maintaining a ketogenic diet). I then proceeded to obtain a capillary BG meter and use it while I absorbed meals. I am a mild but very long-term diabetic, and undiagnosed and uncontrolled for most of my life (now age 60). I knew immediately that I was a diabetic (it took me more time to diagnose the monogenic form) as soon as I used the BG meter.
I would recommend doing the same for anyone possibly in a pre-diabetic state. One can give oneself a home-brewed OGTT very easily too – just chew or dissolve and swallow some dextrose pills with some water and take measurements at one hour, one and a half hours, two hours, and later if still hyperglycemic. Has any MD prescribed an OGTT for you yet? If not, this is malpractice IMO.
In the autoimmune prediabetic state the results might not be stable or consistent, and so I would test quite a bit over severals weeks at least. IMO basal dysregulation is much more likely to have non-diabetic causes than (post)prandial hyperglycemia. So I would recommend focusing on the OGTT response and normal mixed-meal response if you are still not satisfied with your diagnosis. I would forget the MDs – they are worse than useless for someone in a prediabetic state.


There is also something called monogenic diabetes. This case of diabetes is often diagnosed as the more common cases of diabetes but the causes are different. Genetic testing would be done to determine. The hormone levels are important to check and understand what they mean. With monogenic diabetes the body still makes insulin but not at the right time. As I said earlier some manage it with diet and exercise (which is what I said and believe is possible) and others manage it with pills and insulin. But the insulin that is taken is a lot less. This I believe should be talked about with your doctor.


Sugar levels of 130-150 would not cause extreme tiredness as you are describing. Perhaps you’re not eating enough. The thyroid can affect your levels of energy greatly. Before I started taking pills for hypoactive thyroid, I almost had to take a nap in the middle of the day every single day. C peptide tests are not definitive and can be misleading unless it’s at like 0 or something. Your doctor should discuss all the hormone levels with you there are more than one that they test. Some take longer for the results. Vitamin tests as well, vitamin D, iron, b12. Hope you feel better. It could be. Vegetables are very low carb.


I appreciate the continued concern here…I have been through a wide battery of tests for neurological, hormonal, etc. issues. So far nothing has shown. My symptoms lately have much more morphed into what I feel is hormonal…frequent periods, GI distress that I am quite certain is connected to hormones, the lightheaded feeling has mostly disappeared. The problem is that all hormone tests, thyroid, even rare stuff like growth hormone was tested and nothing shows. I really don’t think it is a diabetic problem. All possible tests in that way show normal. I had multiple fasting glucose and 2 hour glucose tests that were below 100. I might need a naturopathic hormonal doctor? Trying to assess where to go next. It’s been a tough journey!


Just sharing that a diagnosis came for me last week…an ultrasound showed multiple ovarian cysts, so PCOS was determined. Now that I am reading about PCOS, I see that my high IGF-1 test result should have been a cue for the endo doc to look at increased androgens and thus, cysts. He just kept telling me I didn’t have an insulin problem!

Now, in trying to treat the PCOS the gynecologist wants to put me on birth control pills, but I am questioning if the IGF is the source and needs addressed instead. I am wondering if anyone has had success here with berberine as a supplement to help with insulin sensitivity?


Why are you gluten free? Were you tested for celiac disease prior to going on a gluten free diet? Your symptoms could be easily attributed to celiac disease (as it can for many other illnesses). If you actually had celiac disease, you might not be as gluten free as you would need to be. Your celiac disease (possible) could be active. Unfortunately, you would need to go on a full gluten diet for 8 to 12 weeks to get tested (antibodies). Not all celiacs have GI issues. It is a systemic disease wreaking havoc on many body systems. It is commonly linked to TD1 and autoimmune thyroiditis. When you had your work ups, did they check for antibodies for thyroid? When my Hashimoto’s was diagnosed, it was caught by testing me for antibodies. My thyroid panel was normal for years until eventually it began to malfunction (indicated by lab tests like TSH).


Since this original post, I went off gluten free as gluten was not the problem. My thyroid has consistently been tested and is normal.