Doctor visit update -- Still in limbo -- Endo #3 the charm?

Continuing the discussion from Meeting w/doc to discuss treatment options–Insulin &/or Victoza–my main fear–hypos–help?:

Hi everyone. Well, I met with my PCP this morning and received some news I wasn’t expecting. It wasn’t bad news per se, but it wasn’t good news either. I gave him all my test results of my two previous endocrinologists. My PCP said he is referring me to another endocrinologist in his medical group that he trusts. This will be my third endo.

The PCP did clue me in that his patients are abandoning my previous endo (endo #1) in droves–everyone thinks he’s gone batty–the one who wanted me to 1) stop taking steroids and let the RA ravage my body (in order to reverse the diabetes); and 2) to increase my exercise regimen to the point of causing a major flare.

Endo #2 - I just can’t get past his office staff to get a follow-up appointment, but he did suggest intensive insulin therapy.

The PCP says I will be in good hands with endo #3 who can start me on an insulin regimen. He also said I need someone I can depend on with my health background-- autoimmunity (Graves disease, rheumatoid arthritis, allergies), family history (T2), steroid therapy, and my maternal grandfather and mother both being labile diabetics.

He complimented me for doing a good job an 6.5 A1C (w/o medications) and my other labs look good–cholesterol, kidneys, etc. I told him I’d been busting my butt–low carb dieting, carb counting, eating to my meter, etc. But I’m still riding the rollercoaster–lows (65) and highs (298). I need some stability–the stress is wearing me down. :confounded:

So I’m still in limbo waiting for the insurance referral. :disappointed: But maybe it won’t take too long since she’s in the same office as the PCP, maybe I can see her soon. I hope so.

A co-worker and friend (who is a longtime T2 and pumper) says I will feel so much better once I start insulin. Mom says the same. I don’t have any fears or doubts, other than lows–I just don’t want to go low, especially since I’m living alone while Mom’s in hospital/rehab (and she’s still fighting lows).

Kate, what’s the lowest you have ever gotten on a meter? At what level do you know you are low and what level do you feel horrible (weak, confused, vision change, etc)

When I was ‘labeled’ hypoglycemia back in 2005, I lowest I ever got that I was able to check on the meter without assistance was 40. I think I’ve been lower than that though.

Then with the increased problems of my RA, my rheumy increased my steroids so I guess my hypoglycemia changed to diabetes. Go figure. I used to have all the horrible weakness, vision changes–tunnel vision–almost to the point of losing my vision.

Now I don’t know I’m going low–when I think I’m low, I’m high and vice versa. I always check before I drive and I may be 138. But once I’m in traffic (~ 20 minutes), I’ll start feeling anxious and funny. While in a traffic jam/waiting for the light, I’ll do a quick check, and I’m dropping to 75 and I’m popping glucose tablets.

I used the Freestyle program and printed reports to show my insurance company the range of my BG (23-258) and got a Dexcom since I didn’t feel that 23 until it got so low after of many years of reactive hypoglycemia. If your meter can print reports like that the Dexcom reps will help you get one by working with your insurance company.

I was told by my rheumy and the second endo that steroids do a number on diabetes. It masks numbers and you never ‘truly’ know where you are at–so you can no longer rely on how you feel.

My last overnight hypo (64) came and thankfully my upstairs neighbor made enough noise to wake me so I could get to the fridge and drink some juice and milk and collapse on the sofa. I didn’t feel like I was 64—I felt a whole lot lower and thankfully it was a Saturday otherwise I wouldn’t have been able to go to work that day.

The ups and downs take a toll and everyone feels them differently for sure. I used to get the hungries and shakes and I wish I still did. Now I feel fine until I suddenly feel like I’ve been punched in the head, or like the world just shifted and I’m suddenly underwater. My awareness went down gradually, 70s…60s…50s but I was shocked I didn’t feel the 20s or pass out when it happened. I was hoping I’d get my awareness back by now but hasn’t happened yet anyway.

Lilli -

Yeah, that’s what the original endo called it–reactive hypoglycemia (before he went wacko on me). He gave me an Accu-check Nano, but my insurance will not cover the strips and he only wanted me to check my BGs once a day. I check at least 4x a day–I have to in order to know where I am–I’ve lost the “feeling” of knowing that I’m high or low, unless it’s really bad. I feel all lightheaded and sleepy when I’m high.

I’m going to ask endo #3 for help on getting everything straightened out–I need help on getting insurance approval for meter strips (even if its just 2x day), a Dexcom, insulin if she deems it necessary, pens (or pump).

The reason I’m shy about the pens/syringes is because of the fluctuations. I feel that I will have the tendency to drop compared to more control with a pump, especially during specific times such as exercise, my cycle, my infusion, work week vs. weekends, etc. My weekend BGs readings are better than my work week BG readings. Things that make you go hmmmm :wink:

I’m obviously not a doctor or an expert, but what I have read from numerous sources is that if one can prevent having any lows for a number of weeks, then hypo-awareness MAY be improved. I’ve no idea what the percentage of people may find that to be true, but that’s what some experts claim.

I too have vision disturbances when low. How it works for me is: if I am moderately low like the the high 50’s to low 60’s I usually get little black “specks” dancing around my entire field of vision. If I am very low, especially if I wake up very low, then I get central vision blindness in the form of a oval blanking out my vision in an area equivalent the size of my hand held at arm’s length. Once I eat something carby, the vision disturbances resolve very quickly. I’ve had these symptoms for more than 15 years but not going all the way back to 1978,. I forgot exactly when it started.

Many years ago when I had bad control (no carb counting, Regular insulin, no meter) I’d freak out every single day thinking I was low when high. Even now, if I do get really high (beyond mid 200’s) I feel a weakness that feels a bit like being low, but now that I’m more used to all this, I can tell the difference. In my bad control days of yesteryear, I would gobble carbs first, THEN check my bgs with visually read strips. I was a fool not to buy a meter until 1992. the visual strips were hard to interpret. For quite a few years I’m much better at detecting that I’m truly low rather than high–not that lows don’t also creep up on me. In years past, I think I was actually very high as often as I was truly low, when I would panic, eat, and then find out I was high (reading the visual strips for confirmation of an approximate bg value)

A few times while driving, I pulled over and self injected Glucagon because I was dropping so fast I knew if I didn’t I’d pass out. oh, those were dark days! I haven’t used Glucagon since getting a pump in 96.

When I asked him what I could do to prevent the hypos his response was eat more protein. But so far eating more protein hasn’t kept me from going low. Then I started just started having smaller meals, but I’m still fluctuating.

I think like Lilli, I need to have a full monitoring to see my trends compared to my finger sticks. I’ve never had the OGGT testing (?) with the nasty drink. I was strictly diagnosed based on my A1C being elevated (fluctuating between 6.1 to 7.1). My non-fasting glucose levels have ranged from 86 to 160.

Originally it seemed as though I was going low early mornings and before eating and spiking after eating. Now I’m slightly elevated pre-prandial and spiking post-prandial and before bed, then dipping overnight. Go figure.

Then all bets are off when I have my infusion–it’s high city then–250-300 for a week.

The Dex showed me I was going low at night a lot which I kind of figured given I developed hypo-unawareness before even starting insulin. When I was still aware it wasn’t happening every day so I thought it might be happening at night too. I’ve been trying to keep my BG over 80 @phoenixbound to get my awareness back, I’m working on it:)

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That’s what I’m going to ask the endo Lilli. Thanks for me a way to ask her. I was wondering what I needed to say, because I’m running higher in the day and evening so I have to be dropping somewhere in the night and I’m beginning to wake up with higher numbers in the mornings. I used to wake up with high 70s to low 90s, but now I’m coming in with 120s to 130s to even 150s in the mornings, which is not usual numbers for me.

I feel my best when I’m 100 to 110–I rarely get these numbers any more. :confused:

Just now before dinner I rushed to check my BG because I thought I was dropping because I was sweating like pig and my eyes were blurry, but my BG was 117, go figure. Only thing I can think is that I was dropping. As I started eating, I stopped sweating, but I still feel crappy.

The rapid swings sometimes make me feel crummy with symptoms like sweats @Kate25, so yes, while 117 is a good number a CGM will show you whether you are trending up or down and more importantly you can observe the speed of a changing BG. So now if I see a 90 with a straight arrow down I know that I need to pop a few skittles to level it off. It’s a great tool, I hope you can get one :smile:

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We are a Skittle-for-bg-adjustment family also. :slight_smile: We do the Wild Berry version only ,as that’s the only ones I like. My wife is so sensitive she will have just one or a few Skittles to get her bg’s up a bit. I try not to eat them at home for lows (not that I like them so much I want to eat them for fun, which I do not), but instead carry them with me everywhere for emergencies.

On steroids - get your rheumatologist to research steroid combos and joint-specific injections that will minimize impact on your bg’s.

Steroids are really really amazingly good and effective drugs. With me they obviously raised my bg and insulin needs when I was on them. But I also know my orthopedist optimized the doses and injection locations specifically to minimize bg effects, efforts that he would not have done if I was not a T1 diabetic.

On hypos - I am confused as to the cause of your hypos if you are not on insulin yet. If this is reactive hypoglycemia, then what I do for my hypos (fast-acting carbs, lowering insulin doses, maintaining hypo awareness) might not directly help you.

Tim -

My rheumy has tried me on every biologic for my RA and so far I’ve failed everything–it works for a while and then stops. Remicade + Plaquenil + Prednisone has been the longest lasting treatment. Rituxan was considered an option, but then tabled for a while since that will be the very last biologic for me to try. I am not eligible for research trials since I have taken so many different drugs–subjects should have only failed two or less drugs.

I would love to be weaned off or reduce the prednisone, but every time we try, the RA gets worse–the original endo tried it and it was a disaster–chronic iritis in my eyes (to the point of bloodshot), plantar fasciitis in both feet (unable to walk), SED and CRP off the chart. Prednisone is a miracle drug for RA, but a curse for diabetes. My RA just makes me feel like I have the flu 24/7, all over body aches–jaws, shoulders, fingers, feet, hips, ribs, back, knees, and toes.

I don’t know what’s going on with my diabetes–when I went to bed last night I was 166, and traveled to the bathroom all night long peeing. This morning’s alarm pulled me out of a nightmarish dream–I felt like crap, like the cat had dragged me over the railroad tracks, anxious feeling, checked my BG and I was 75. I had to pop a glucose tab, eat some yougart, and sit 15 minutes before I could fix me some breakfast.

Sometimes when I get up many times in the middle of the night to pee, it’s a high bg (usually well above 180).

But other times my bg is fine too but I spend all night getting up to pee (usually not much each time). With me that is a slightly enlarged prostrate (as semi-regularly examined by my doc!), it seems unlikely that’s your particular reason!

My wife happens to have RA and did Plaquenil for a long time, but now does Methotrexate + Prednisone with pretty good results. Not a cure of course! She used to play violin before the RA. Now she helps the two youngest kids learn violin!

One thing I’m curious about and maybe you all can answer this question. My original endo never did a 6 hour glucose test on me–would that tell anything or be worth anything? He said the A1C proved that I had crossed over into diabetes territory. But I wonder if there are other tests that will show what craziness is going on with me.

I know Lilli suggested the Dexcom (CGM) which will give a trending, but I also wonder if there is any other tests. My PCP thinks my A1C 6.5 is good, but you also have to factor in all the dips/valleys I’m having as well as the highs/peaks that average out to the nice 6.5. The rollercoaster doesn’t feel good.

Before lunch I checked and I was 93, but I’m still feeling like I have a hangover and need a pick me up. I ate lunch, and for a few minutes I felt better, and then I started feeling bad again. It’s been an hour and half after eating a small, dry green salad and a small, one inch, walnut brownie. Just checked my BG and I’m at 158–this is going to be a very…crappy day of not feeling good. Normally, I would have come in at around 125-130.

Perhaps, but it’s a rather large territory and I get the impression you are in one of the less well mapped parts of it. :frowning:

There are probably a lot of personal tradeoffs which affect which direction might be a more reasonable option for you. But in many ways the Dexcom plus a pragmatically careful concurrent log of your food & activities might be the easiest way to get a more detailed picture of how … or more importantly if … your BGs trend in some unexpected way.

Another potential option which I seen talked about but actually have absolutely no personally understanding of might be to get your MD to hook you up with Dexcom’s version of a diagnostic (?) sensor. My understanding is that it is essentially the same thing as the personal Dexcom except that it’s a black box.

The sensor records data but you won’t see the results real time. The sensor is hooked up to you, you wear it for a period of time (week?), and then you turn it back in to the MD. The results are then combined with your BG meter results during the period and massaged numerically to turn the sensor data into sensor glucose graphs which can be analyzed.

I realize that may seem a bit bass ackwards since the Dexcom personal CGM is so easily obtained & popular. The only reason I bring it up is that since the process appears to be so obviously a test which is under the supervision of your physician, the insurance consequences may differ for you than trying to obtain a personal CGM.

All of the above is basically a guess as I have only seen these diagnostic sensors mentioned in passing. And, again, your MD may poo poo the idea which makes it a non starter. Just figured it was worth tossing the idea in the general direction of the wall and see if anything stuck. :flushed:

Kate, do you pre-bolus for your meals? Sorry if this has been asked and answered in your case. My prebolus time for my first meal is about an hour and for other meals, 30 minutes. If I don’t take my insulin well in advance of my first bite, my BG will easily exceed my targets. When my CGM line dips, that’s my signal to start eating. Since you don’t have a CGM, you could approximate this with some well-timed fingersticks and then just use that time going forward. Just a thought …