Endo Visits Must Be Logged....

....or else they didn't happen, right?

Hmmm..

He still loves me and wishes every patient was just like me. I'm pretty sure he doesn't say that to everybody. That's my story and I'm sticking to it.

A1c is still 6.3, which is where it's been since last June. Ok, then. I guess that's just how I roll. I was surprised, because the past few months, diabetes has kicked my butt a few (dozen) times, and I thought that would be reflected in the numbers. But I guess not. So....yay?

He gave me some Novolog pens to try, just to see if I like them better than my needles. I would tell you, but I keep forgetting to actually use the pen, so at this point in time, I have no opinion. I need to just keep it with the rest of my stuff, instead of in the fridge, where I just forget about everything until it's time to switch insulins.

It's HOT here.

The rest of my lab numbers should be showing up in the mail anytime now. All I got over the phone was "everything else looks good, kidney and liver is fine, cholesterol is good, your white blood cells were a tad low, but since everything else is fine, I'm not concerned."

Which of course sent me running to Dr. Google and had me self diagnosing everything from leukemia to a basic viral infection. I'm pretty sure I have everything. I would like to see what the cholesterol is, that's what everybody seems to care about, anyway. And so I get to watch my mail with anticipation, which actually brings me great joy. I always love it when there's something other than credit card offers and junk mail. But it also sent me running to my old labs and I can't actually see any WBC counts run before. He always just ran a CMP, not a CBC. And so I have no baseline! Was I always running a little low? A little high? Did I change? These are mysteries that will never be solved.

I know I've had CBC's in the past.

There's got to be one here somewhere.....

Fun times at the endo. Plus CAPS. LOTS OF CAPS.

So, I went to the endocrinologist last week. He still loves me, thinks my attitude of "I want more beta cells and I don't care what I have to do to get them" is great. My a1c is still 6.3.

It's a nice rhyming number. (A1C! 6.3! There's a cheer in there somewhere.)

My LDL is also down to the 150's, so that's better, but we're still treating it. HDL still high, so that's good.

He also did some kind of sensitivity test, and my cardiac risk is low. I'm not sure what the test is called, because they DIDN'T SEND ME A COPY OF MY RESULTS, even though I ask every time.

I swear that nurse/tech/whatever her title is doesn't like me. I also left without a follow up appointment. It was weird.

"OK, I think I need to make an appointment for 3 or 6 months out."
"He didn't say. When you get your lab work then he'll tell you."
"It's never worked like that before. Can I just make an appointment now?"
"No."

OK, I'll leave now.

So, the real question I had for my doc was regarding my Dexcom. CGM. The Golden Ticket. WHY didn't I get one last time? Denied? What can I do now?

"Huh, I never heard back. Let me check on that."

Then he said he could trial me for a week, but they one they have cost him $800 out of his own pocket, and it wasn't charged, and I would have to BRING IT BACK because it cost him so much money, and I would have to be careful, and the nurse that usually educates on it isn't here, and it was pretty clear he didn't want to hand it over.

And...as it turns out, they never sent the request. That could be why I didn't get one. If my insurance or the Dexcom people don't know I want one, they don't magically send one out randomly. Funny how that works. So this time I stayed there until the request was faxed.

Then I went to lunch with my husband, after being scolded for wanting follow up care.

At lunch the Dexcom people called me. YES. They aren't in-network, but they know people who are, they will be calling me in the next couple of days.

Yada yada yada.....a bunch of phone calls and nagging of my doctor's office later.....IT'S HERE. TODAY. I AM JUMPING UP AND DOWN.

Did I mention that my deductible is met and it didn't cost me anything? 2 weeks later, that would have been quite the different story.

Did I also mention I don't have a clue as to what I'm doing? I guess I will be calling tomorrow to go meet with the nurse to have her show me what to do. While there, I'm going to schedule a follow up appt. You know, if they let me.

"Cause I've got a Golden Ticket...."

In Which I Reveal Confidential Medical Information

So, went to the endo yesterday. Reminded him that I was his favorite patient. He laughed and admitted that I was "one of his favorites". I bet he says that to eveyone who insists on favoritism.

Demanded stem cells. No dice.

Asked about a pump and a CGM. He said he was a fan of pumps for some people, but my control is good on the MDI's, so unless I REALLY REALLY wanted it....he didn't see a reason, and you know what? Shots are fine with me. They really are. The CGM, however, I do REALLY, REALLY want.

He said if I had more days where I woke up super low (like I did right after Easter) then he would definitely fight for me to get one. He also said he would only do Dexcom, not Medtronic. I told him that was great with me. So...do I give myself more insulin to have scary scary daytime lows and get a CGM? NO. Even the thought scares me, and I would never put myself at risk that way. But do you see what the insurance companies have reduced me to????

Speaking of insurance, I found out today that my deductible went up by $1000 (from 3k to 4k) on June 1st with no warning whatsoever. The fact that my daughter's ER visit in April would have COVERED that doesn't seem to phase them. I. AM. BITTER. I'm still going to call and whine at them on Monday, even though I will probably get lost in voicemail hell. (*please say your ID number* *sorry, I didn't quite catch that*)

OK, lab stuff - A1c - 6.3. I'm OK with that, although frankly, I like it to hover at 6 or below. My doctor was thrilled. My husband told me that if I didn't like it, then I had "something to work on for next time." I wanted to punch him in the face. But I didn't. Because he was on the phone. Also I love him dearly.

LDL - still really really bad, and at 196. HDL is up to 57, so that's good. Doc and I had the following conversation:

So, I'm going to put you on blah-blah-statin.

This in instead of the simvastatin?

You're already ON cholesterol meds? And these are your numbers?

Um, yeah. But I forget to take them half the time. That could be the problem. (GREAT with shots, terrible with pills.)

OK, I'm going to up the dose, and even if you miss a few, you should still see some benefit. I'll call it into Walgreens. Put your pills by your toothbrush or something.

All right.

I hate high cholesterol. I kind of think it's a fake problem, because bringing down cholesterol isn't necessarily reducing the number of heart attacks. (Also, my father in law just had a triple bypass and his cholesterol was perfect. My dad's had high cholesterol all his life but at 77, nary a twinge of chest pain.) But I digress, and I will take my pills like a good little girl. I was kind of hoping to go off them, though - I don't like the long term side effects reported. Guess THAT didn't happen.

And it was at that trip to Walgreens, where I decided to pick up my refill of test strips along with my new horse pills, that I was asked to pay over $200 for said strips since the deductible wasn't met yet. I asked them to hold them for me while I railed on my insurance company for a few days. They're cool with that. I'm still going to have to pay it, though - I can feel it in my bones.

Thyroid, CMP, everything else was "fine." Still waiting for the lab results in the mail so I can obsess over them and see what "fine" means. Hopefully I'll get them, I did ask the tech 3 times to send them, but that didn't work last time.

Ok, then - off to check my sugars, then swear at my monitor, wash my hands, and check my sugars again. Last night I shaved 50 points off doing that. How did so much "sugar" get onto my hands? I don't know - it's a mystery.

As Promised ....NUMBERS! YEAY!!

A1c - 6. Awesome. I was really surprised at this. I thought for sure it would be at least 6.5. So I was thrilled.

C-peptide levels -- started out low again, and then at the 30 minute mark it kicked in and by the 180 minute mark it went up to 2.1, which is in the normal range. NORMAL. (6 months ago it was highter, but hey). It's consistent with what it's been doing up till now, starting out low and then my pancreas wakes up and starts squirting out the good stuff. If only we could get it to squirt out the good stuff EARLIER and CONSISTENTLY.

So my original thought that I wasn't honeymooning anymore couldn't be more wrong, and I am thrilled about that. They told me that obviously the onglyza wasn't doing anything for my c-peptide levels, and I could go off it, at which point I told them I had taken myself off it anyway, and gone back to 10 units of Lantus, since it really did seem to be messing with me.

And then, yesterday my fasting sugar was 43. Bad News Bears. Fortunately I had some toffee, plus some other Easter candy leftover. I had too much, and swung up into the 200s, but still, it was tasty. I thought it was just an anomaly, and then today I started getting really dizzy shortly after I woke up only to find myself at 39. I truly thought I would pass out - and who knows if I would wake up? It's scary to be very low and all alone. (Yes, I wake up after my kids go to school. I'm VERY lazy. Did you not know this about me?)

At least I still have hypo awareness. That's good. And lows like that might make getting approved for a CGM much easier. Still, I hate them. I think I might lower my Lantus again, which would be kind of awesome actually. We'll see what the doctor says.

So there you have it! Fairly good a1c, and still honeymooning! What was I whining about again?

Latest Utah Trip

First of all, the weather was the worst I've ever seen it. The inversion and the smog was so bad, you could barely see or breathe, with warnings posted everywhere (DRIVE LESS) and people telling you not to go outside if you don't have to. I'm sorry, but how bad does the summer have to be before you say "16 degrees with no breathable air is better than this."?

In other news, the a1c was 6. It's been better, but that's not bad. Not bad at all.

Big Pharma - helping me - but screwing you over.

Got the results from the mixed meal tolerance test in Utah. A1c is 5.8. Awesomeness. C-peptide started out really low, but it went up to 2.7, which is really quite good. Honeymooning 21 months after diagnosis? Also awesomeness. My pancreas still works, baby, and even if it's not doing its job completely, I'll take what I can get.

The big news, though - the day I went up there, was the day the office learned that the drug company is pulling all studies of this drug. END. NADA. NOBODY ELSE GETS IT. I did Protege, which had already stopped enrolling because it was full, but Protege Encore? (same drug/same dosage) OVER. Subcue? (drug give with needles instead of infusion) STOPPED. Everybody was in complete shock, they couldn't figure out why. The official reason is that the efficacy goal wasn't reached.

HOW could this drug not be effective? The office I go to has the largest enrollment, and they've seen incredible results. 3 people off insulin, snacking on Snickers bars. Nobody's Lantus dose is over 12, and they've had many people drastically drop - like from 30 to 6. And yes, most people stay on insulin, but the main goal of the drug was to drop insulin usage and extend the honeymoon - which was totally happening. Maybe other sites were teaching their subjects differently - i.e. saying they didn't need to manage their diabetes, see if the drug does that - I don't know, but saying the drug is ineffective just blows my mind, and everyone else working with it.

It's also supposed to decrease the number of lows, and you want to know how many hypoglycemic events I've had in the last 6 months? TWO. And both times, I know the reason why (more exercise than usual). I am no longer terrified of going low - I mean, I still carry candy, but I hardly ever use it. That right there makes it worth it.

You know, in the beginning, I would Google all the time, trying to find people that were in the study, see what happened to them, and I would find little snippets here and there, 100% positive. I still do that, actually. And I did see on one board somewhere (and I can't find it now, which is driving me crazy) a comment from someone that struck me as paranoid. It was when Eli Lilly bought into the study (it used to just be MacroGenics, and it happened while I was enrolled) and he said something to the effect of "Eli Lilly always buys into Type 1 studies that look promising, says they aren't effective, and then kills them. Just watch. That's what will happen." And spookily enough, here we are. Eli Lilly was in charge, declared it ineffective, and killed all the studies with teplizumab.

It's almost enough to make me a conspiracy theorist. I mean, the dude predicted it. The press release (found here) says it was an independent committee, but hmmm....

(The office also found Eli Lilly much harder to work with. Reimbursements for travel and other payments started taking much longer to get.)

I don't know why a drug company would kill it, though. I mean, most people don't go off insulin. They still need the test strips, the needles, the insulin, the money makers for the drug companies. They just get an additional drug, which you think would be win/win for the drug company. Make diabetes MORE expensive, but with the added benefit of extended honeymoon/fewer lows/increased quality of life for the diabetic. But the whole thing stinks of money somehow - maybe they wouldn't get people to pay for the drug, after all, every doctor I've ever mentioned to that I took this, pauses for a second and says "that has got to be one expensive drug." So possibly they were worried they'd get it approved only to have it sit on the shelf as insurance companies and patients opt not to pay for it.

The whole thing just really really bothers me. I don't like the feeling of not trusting the data. What other drugs were stopped in the past and/or will be stopped in the future? I don't like that nobody else will get this drug, when I would totally recommend it to anybody newly diagnosed. I don't like feeling like the search for a cure has taken HUGE steps backwards, all because of the almighty dollar.

But hey, MY numbers are good. I'M lucky, I guess. But there should be more than just a handful of us.

The Results Are IN

5.6 BABY! YEAH!!!

FINALLY!

Ok, so I finally got the results - C-peptide levels are right around 2.5. Lower than last time, dang it. (used to be 3.5). But still pretty good for a Type I diabetic 16 months after diagnosis. So...good news, I guess. The honeymoon is still going on - even if my body's not doing AS much of the work as it was before.

I'm not sure what my baseline C-peptide was, I do know it went up after the first infusion, my guess is I'm right around baseline. Evidence again that the first infusion did much more for me than the second one. I really think timing is critical on this drug. The sooner you get it, the better.

Also, A1c was 5.9. Awesomeness.

Oh yeah.

OK, so I was in Utah for a blood draw on Monday, and they were going to run an a1c and call me with the results. Just got the phone call. Oh yeah, baby.

5.7!!!!!

She asked if I'd been having a lot of lows, or if I just had good control. There was one day of lows a couple of weeks ago mainly due to the fact that I thought I should up my Lantus dose. (I was bitter about upping it, too). The next day, it was very clear that upping it was not the way to go. Bitterness assauged. Other than that, though, it's just mainly good control.

Today, I am happy. (Last night, I was mad at my 182 before bed, but hey, they can't all be perfect days, right?)

Still honeymooning - I have proof!

So, last week I went up for my second "mixed meal tolerance" test, which is a lovely procedure in which they pull blood, and then give me a Boost drink (vanilla! I asked why they couldn't do chocolate, and they stared at me blankly and could give no real reason. I like to think the next study patient might get chocolate thanks to my efforts).

After my lovely "meal", which I have to drink in 5 minutes (not hard) they pull blood every half hour for the next four hours.

Oh, did I mention I go in fasting, having taken no insulin the night before? It's such a party.

Based on these results, they decide whether or not I am eligible for infusion. They are mainly checking C-Peptide levels, because if there is no C-peptide activity, then there is no insulin production to preserve, thus making their efforts in vain. (Although I do wonder if someone who's been diabetic for years could have some positive reaction to the drug. Maybe that'll be their next study.)

I am happy to report that not only do I still have C-peptide activity, my levels are higher than they were before! 3.5, in fact, which is fairly high, even for non diabetics. That is excellent news.

So my next infusions start towards the end of October. If this dose helps as much as the last one did, well....fingers crossed.....

They ran another a1c, too. 6.4. Not as good as the last one, but I think my last one (5.3!)was so low due to multiple lows as I kept having to figure out my insulin:carb ratio that was constantly changing. Still, 6.4 ain't bad. I'll take it.

Ahem

I went up to Utah for another blood draw (I swear, so ridiculous that I have to go up there) and they ran another a1c. The result was.......(may I have a drum roll, please)?......................................

............................5.3!!!!!

Yeah, I'm pretty excited about that. Woot!Woot!