New to diabetes and frustrated

First, THANK YOU for this site!

Next, I am leaving for the holiday weekend so if I do not respond to posts right away, it's because I am on our scooter headed to Wolverine Michigan for a much needed get-away with the hubby!

Finally, a bit about myself. I am 42 and in the process of figuring out what is wrong with me. I have been diagnosed with Pre-diabetes / hypo unaware and the next step is a 72 hour fast. I have purchased, out of pocket, a Dexcom CGM and it has been a life-saver with my lows. Insurance was not going to cover it because I am not T1 or T2, but after arguing with them and sending them a month of readings, they finally caved and are reimbursing me. Thank God!

I am trying to figure out a pattern and I have had no success yet. Food does not seem to have much impact unless I avoid carbs at ALL COSTS. I go hypo almost every night and wake up after just 3-4 hours of sleep with readings as low as 42. No matter what I do before bed, I cannot get it to stabilize.

Main frustration comes from a lack of diagnosis (or should I say misdiagnoses as "mental") and causes. I do know that hubby calls me Dr. Jekyll and Mr. Hyde and this whole diabetic road has cost me many friendships and almost my marriage. Sorry to lay that all out here, but it is "who" I am at this point.

Anyway, I hope everyone has a great weekend and I will check back as often as I can.

Thanks for listening!

Sorry that you've been having troubles to the point that you're joining us, but welcome.

For many, lows can occur long before an official diagnosis. I was driving myself crazy for a couple years before diagnosis trying to figure out why I was waking up with my heart racing, unable to think, feeling inches from death. (And eventually became hypo unaware) But fasting labs each year didn't show any problem, so diabetes was never suspected.

One thing I'd suggest looking into or bringing up to your doctor is antibody tests for Type 1. And researching LADA. It's a slower onset of T1 in adults that often gets misdiagnosed. I'm not saying that's what you have. No matter what the test results say, having a proper diagnosis is a good thing so you can plan your treatment accordingly.

It's wonderful that you've been so proactive in getting yourself what you need. The Dexcom is a wonderful thing. I wish you luck in continuing to figure out your way on this frustrating journey.

Here's a great post on the Antibody tests to ask for

let us know how you're doing, and have a lovely holiday!

Just piling on . . . it is vital to get a correct diagnosis. Many doctors were taught in school that only kids get T1 and only adults get T2. Nowadays we know this is utter nonsense, but thousands of doctors continue to apply the rule automatically, knee-jerk fashion. When an adult presents with diabetic symptoms, they just assume they must be T2 and don't order any tests. This happens every day and it is a scandal.

Get those tests. Find out what you really have. Before it is possible to attack a problem appropriately, you must first know what the problem actually is.

Oh . . and know absolutely that you've come to the right place. Our guiding principal, as stated by Manny, our founder, is "no diabetic should ever feel alone". We're glad you found us. Welcome to the family!

Hi Lilbit: So sorry for all that you are going through, but I am glad that you have found TuDiabetes and you have been given some good advice. It would be helpful to get the autoantibody tests and the c-peptide test. You have demonstrated great perseverance to get the CGM, which should be very helpful.

It sounds like you are doing the best things possible in that peculiar situation, seeing some menacing handwriting on the wall but not quite being there: keeping an eye on BG, discovering and practicing feuding with insurance companies!! Keep up the great work!!!

Thanks! Its been a challenge, but my life, sanity, and hubby are worth the effort! I look forward to learning a lot more from everyone here!

Sorry it took so long to respond!

The feuding seems to be what is keeping me active and happy at this point, especially when I win. Still no word on when my fast is being scheduled, but I have printed off the page from a post above and plan on taking it with me.

Have a great day!

Thank you, Melitta! Sorry for the delay in responding! Have a great day!

Thanks, David.

Would there be a difference in treating T1 vs. T2?

Thank you, Marie!

I printed that out and will be taking it with my to my next Appt.

Wow. Short question, giant topic. LOL :)

Spoiler alert: I am about to climb on one of my favorite soap boxes.

Traditionally, the treatment for T1 has always been to start insulin therapy immediately (there really isn't much choice), whereas the approach for T2 was some combination of diet, exercise, and oral medication (pills). The typical progression, over a period of time -- often years -- would be that the patient would require progressively larger doses of medication until BG control became so problematical that insulin would eventually be the only realistic option.

This traditional approach is partly why many doctors and patients viewed insulin as a last resort or admission of failure. My own personal view is that that kind of thinking is exactly backward, a view which is not restricted to me (more on that in a moment).

When it comes to controlling blood glucose levels, insulin is far and away the most powerful weapon in the arsenal. Seems to me that the most appropriate tool in any situation is the one that produces the best result. If you had a broken leg, would you look upon a cast as a "last resort" and try to put off getting one as long as you could? Of course not; you'd want it and you'd want it right now.

Medical opinions change slowly; a glacier is faster in comparison. Nevertheless, many health care professionals and patients are beginning to take the view that it makes sense to give one's overworked beta cells a rest with a view toward making them last as long as possible, instead of driving them extra hard and hastening the time when they start to burn out from sheer exhaustion. Personally I wish I had started using insulin a decade sooner than I did; I'd probably have a lot more beta cell function left than I actually do.

For an early-diagnosed T2, insulin therapy can often be a temporary expedient, allowing an overworked pancreas to recover sufficently to permit control to be subsequently maintained with a combination of diet, exercise, and (possibly) oral medication.

The great majority of health care professionals do not yet subscribe to this philosophy. However, the world renowned Joslin Diabetes Center, which is pretty much the gold standard of diabetes clinics, now starts newly diagnosed T2 patients on insulin right away. Perhaps they know something?

To address your basic question in a broader context, the spectrum of treatment options is large and constantly expanding. This is a field that changes almost daily; at least it feels that way much of the time. There are a number of really excellent books out there that explain the choices thoroughly and in detail. Here are three of the best ones:

Jenny Ruhl, Blood Sugar 101: What They Don’t Tell You About Diabetes (Turners Falls: Technion Books, 2013)

Richard K. Bernstein, Dr. Bernstein's Diabetes Solution, 4th. ed. (New York: Little, Brown and Company, 2011)

Gary Scheiner, Think Like A Pancreas (Boston: Da Capo Press, 2011)

The trick in consulting any expert, whether in person or by reading his/her books, is not to follow all advice blindly, but rather to take what you can use and leave the rest. There's a lot of good information in the above sources, though.

And of course there is TuDiabetes. This is a community of nearly 35,000 people who have been there ahead of you and are eager to share their experience. Ought to keep you busy for a while! :)

Please explain the 72 hr. fast...?

My understanding ...

Stop eating and drinking at 6:00 p.m. the night before the test. Have someone drive me to the hospital where they will take baseline blood work including a BUNCH of things (c-peptide and a list of a million other things they mentioned) and check it every 30 minutes until they get a desired result of hypo (I guess). I have not really had a chance to speak to the specialist that my endo sent me to about it yet.

My first endo mentioned symptoms of a tumor on my pancreas or something, but the name is at home in my notes. More info when I get home if you want it. Let me know!