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

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 …

Thanks I-John. That’s good information to know. Kind of like a heart monitor which I have worn before with my cardiologist. Makes sense.

I can bring it up to the new endocrinologist at my visit with her. My PCP says he likes this endo and she easy to talk to and work with, he works with her and I trust him. The original endo you could not talk to him about anything–it was his way or the highway for the patient and any other doctors involved.

No, I’m still doing the diet (low carb) and exercise regimen (original endo’s orders). The second opinion endo said I needed insulin (especially for meals) and was going to prescribe insulin or Victoza and possibly do additional tests during the follow-up appointment. But…I can’t get another appointment with him (due to being stonewalled by his office staff) until next month. So my PCP said he would refer me to the endo in his office group.

It’s like a never ending moving target…when I think I’m doing good, I crapshoot; and, when I think I’m doing crappy, I come up with a good number. I was officially diagnosed August 2013, and was holding steady (around 100 - 120), but since December 2014, I’ve very sporadic (75 - 180), and now since March I’ve really been missing the target (65 - 298).

At diagnosis my non-fasting lab BG was 264 and my A1C was 7.1, but my last test in May my non-fasting lab BG was 86 and my A1c was 6.5.

Tim - Yeah, I don’t think I have the prostate problem. :slight_smile: I also notice that I retain fluid, so I don’t know if its the diabetes or RA or a combo of the two, but I seem to be smaller weight-wise in the mornings due to all the traveling at night. :stuck_out_tongue:

I tried the Methotrexate injections (couldn’t take the pill–GI problems) but they gave me abnormal labs for my liver and lots of nausea–I had once of week shot nights (Fridays) so I could sleep through the side effects. Methotrexate is really good for anyone who can take it.

That’s great that she teaching the kids to play violin. I always wanted to learn piano. :frowning:

I just experienced a similar vision disturbance when wheeling the mower back into the garage. It was a whirling pattern kind of like you’d see in a kaleidoscope. I checked immediately and was 51!! Ate 2 glucose tabs right away. Didn’t otherwise feel low and didn’t see the disturbance out in the yard due to the glare, I guess. I was 148 a few minutes before I started. The temperature is mid-70s and I drank water before I started and was only out 1/2 hour. Weird. I am thinking seriously about a CGM!!

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Exactly the description I would have given it. I’m low when I see the whirling thingy, and then we I see yellow globs I’m real low.

It sounds like you’ve talked to at least one pretty aggressive endo, and I think that’s great! I have nothing against insulin, I’m a T1 and obviously need it! But I don’t see anything in your numbers that indicates insulin is the right choice for you, and I see several things (including hypos) which indicates it could be wrong for you. An endo would obviously know better than me, but metformin could be a possibility - it’s surprisingly effective for many non-T1’s.

I’ve experienced two or three episodes in the last few years like you describe. Some of my siblings have also experienced these visual disturbances and my mom had them. too. They told me that they found them to be a “visual migraine” or “migraine aura.” Here’s a Mayo Clinic explanation and video that matches well with my symptoms. I, too, had kaleidoscope-like effects. I also had small parts of my visual field appear as shimmering water-like filter that partially obscured the scene behind them. I was not low when this happened, I checked!

It’s curious that your symptoms occur when your BG is low. That has not been my experience. When I’m low, I do experience visual and audio caused irritation. I first realized that light variations irritated me when I was riding a bike on a tree-covered path. The on-off flickering of the sunlight really bothered me. With sounds it can be almost any ambient noise that I would normally just tune out. Children playing at the laundromat are one example. It could just as well be the noise from a construction site.

My optical migraine was much bigger, Had half a wheel in my periferal vision, and I wasn’t low when this happen. I never really had this before so I asked my eye doctor and she told me what it was and that it was harmless.

I get ocular migraines also, with NEVER the headache. I get a zig zag line like a lightning bolt that generally lasts under an hour. It comes on suddenly and intensifies over the course of the next 10 minutes or so. First time it happened, I rushed to my eye doc. Now it’s just,“oh, here it comes again”. Sometimes it’s so bad, I can hardly see, so I lie down, but generally I can “see around it”.

Good description. I thought I had detached retina or something. I couldn’t see that eye either. I had laser surgery recently too.

Please no metformin. I could not take it. Or the ER version. Bathroom all day and night. The endo did mention Victoza as a possibility. I am terrified of hypos.

My husband used to get them regularly (eye migraines) but I never knew what he was talking about until I had one once while under a lot of stress. It was quite fascinating, like looking through a kaleidoscope. I didn’t get a headache and knew what it was since he had had them. He hasn’t gotton one in a long time that I know of but I think I’ll ask him when he gets home. He had cataract surgery last year maybe that stopped them?

eye surgery has no effect on eliminating ocular migraines. the cause is believed to be in the brain. Sounds like he just hasn’t had another episode yet.