Meeting w/doc to discuss treatment options--Insulin &/or Victoza--my main fear--hypos--help?

Hi everyone. I’ve been off line for a while dealing with family issues, work, fighting with Uncle Arthur (RA flares) and contemplating on how I am going to deal with Cousin Beetus (Diabetes).

I have a follow-up doctor’s appointment with my second opinion endocrinologist to discuss the next step in treatment. I am riding a rollercoaster of swings due to my RA medications (prednisone/Remicade), subclinical hyperthyroidism, my hormonal cycle, and stress (work/life balance).

Diet and exercise is no longer controlling the beast. I used to just have elevations after eating but now swing high/low throughout the day. I really want my BGs to be under tight control and I am doing the low carb dieting and being as active as possible.

At my initial visit the endo stated that insulin should be implemented and/or possiblyVictoza. My A1C is 6.5.(~140), my meter is averaging 150, even though the non-fasting BG for the labs show 86 (which I think is an error) based on researching some articles stating how long it took the blood to be processed after the draw.

My questions are as follows -

  • I don’t mind taking insulin–I had to take multiple injections for years for my RA before I started monthly infusions.

  • However, I do have a huge fear of hypos–especially since now I am unable to discern highs from lows like I could in the past—when I check now and I think I’m low, I’m high and vice versa.

  • I am also concerned about the fact that my schedule is very hectic and not set in stone depending on how busy and how many meetings (scheduled or unscheduled) may pop up on my calendar;

  • My monthly RA infusions drastically affect (spike) my BGs for at least 1-2 weeks–because I am receiving prednisone infusions (125 mg/monthly) + Remicade + I continue to take my prednisone pills (15 mgs/daily).

  • Currently living alone while Mom is in rehab. If I have a serious hypo emergency (i.e., unconsciousness), I’m in deep trouble.

To those who are on insulin or use Victoza or both what are your thoughts about the items I have listed above.

Will the endo give me a sliding scale for the insulin to work with so I don’t have hypos? Mom would adjust her insulin even though her endo would tell her to eat to the set amount of insulin he prescribed. I have seen directly how damaging hypos can be (my mom’s coma, a cousin’s death). Mom never had a problem with critical hypos (below 40s) until she was in rehab and the doctor had the insulin set too high and the staff didn’t provide her with her night snack or check her sugar until she was already in the coma. That’s my only apprehension, other than that I’ve been around insulin all my life.

What would be the best insulin delivery? My family members were all “old” school syringe and vial. My mom was offered pens and a pump by her favorite endo (who retired–not the strict one she has now) but she refused–using Lantus and Novolog vials instead. I think her youngest brother did use pens.

Would the endo just tell me what to use or give me options and/or choice in the matter of pens, syringe/vial, or pump–I would want whatever delivery system that would give me the most control to live normally–my job calls for business breakfasts, lunches/luncheons, dinners, conferences, etc.

All help is greatly appreciated.

I used Victoza for a while before my endo finally diagnosed me correctly as type 1. My experience with it was not very good, it caused bad nausea all of the time and totally killed my appetite. When I first started on it, it seemed to be the answer as my A1C went from low 7s to mid 5s, but that only lasted for a few months and then it started climbing again, mean while I went from 175lbs down to 155lbs. I finally talked my endo into putting me on insulin and things have been much better ever since.

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I am Type 2. I used both Byetta and Victoza and then four years ago started insulin. I never used them together. From your story I can understand your anxiety over hypos. Byetta and Victoza never ever gave my hypos, but then again they were not effective. I know they have been effective for others. Insulin on the other hand has been very effective and I’ve experienced few hypos and never a moderate or severe one. I’ve had two readings in the 60s in the last 90 days. But I’ve worked very hard to tightly manage my insulin and I eat a very low carb diet which really helps limit blood sugar swings.

That being said I guess I would like to ask you a question because that will help you know which treatments will be helpful. First, do you have chronically high fasting blood sugars? Do you wake in the morning with highs? Do you have highs after meals? Do they fail to come down at two hours?

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Thanks Wheelman for the input about Victoza. That’s my concerns about what the difference in therapy would be between Victoza and insulin. I definitely like the fact that Victoza helps with weight loss since prednisone causes weight gain. But I don’t want to have to run the gambit of various medications and go through all the side effects that I had to with my RA diagnosis.

I thought I was going to have to spend the rest of my life in the bathroom when I was given the Metformin to take. Finally my originally endo decided that that it wasn’t for me, but he never moved forward with any other therapy, so I was still in the water, upping my exercise (not good for my RA) and reducing carbs… This endo says that due to the prednisone regimen, I need insulin.

Brian -

I remember some of your previous posts mentioning your experiences with Byetta and Victoza.

Immediately after my monthly infusions and two weeks after, I run chronically high 200s and have elevated fasting readings (120-140s) and after meals (160s). About 1.5 weeks before my next infusion, my fasting readings will level off to the low 100s, and after meals (140s-160s). Usually my higher readings are postprandial but lately (last month) my fasting BGs are beginning to run higher than where they were a couple of months ago.

So it’s like I have a Jekyll and Hyde (split) group of readings. Sometimes I’ll go as low as the 80s with a couple of 70s thrown in and high as 298, depending on combination of work, exercise, RA flare, stress, and hormones.

Most of the time my postprandials hold after 2 hours. Sometimes my postprandial highs come down, but sometimes they creep even higher, especially after exercising. I used to be able to exercise and if I was 150, my BGs would be 110 after two hours. Not anymore. Now, it’s the opposite. I may end up 190 or 210 two hours later. I like to exercise in the evenings. Then the next morning I will still be high or sometimes low–70, lowest was 64 (thankfully my noisy upstairs neighbor woke me).

My mom is the opposite–exercise makes her drop immediately just like she took a correction shot. She rarely had to take a correction shot, just do some exercise, boom, her BGs comes down.

Tuesday with be judgment day as to what the new endo and I will decide.

With all of your medical issues, you are perfect candidate for a Continuous Glucose Monitor. See if your doctor will work with you and your insurance company to get it approved. I love my Dexcom and haven’t had a severe low in the two years I’ve been wearing it. Even if they have a “no Type 2” CGM policy, you might get an exception. Good luck.

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Thanks Michelle. I’ve been so concentrated on the insulin delivery, I hadn’t thought about a CGM. O.k. I’ll put it down to address with the doctor Tuesday.

Update - due to potential tropical storm Bill my appointment for tomorrow was cancelled. The office staff had wanted me to come in Wednesday, but where I live is under flood watch through Wednesday and will probably flood through the week. Darn weather.

The office staff will not agree to give me an appointment for next Wednesday even though I had a valid appointment that needed to be rescheduled. Very unprofessional and uncooperative. I asked if I could do a phone meeting with the endo Wednesday and they said they couldn’t guarantee that either, and they decided to cancel my appointment all together. I wouldn’t be able to see the endo and followup with my results or get any medications (especially need some adjustments in my thyroid meds and he had plan to start me on insulin). Last night my BG was 190 when went to bed. Before I ate it was 92 and I just ate vegetables! This morning it was 110 fasting, and before lunch 117, but I’m sure it will skyrocket after lunch.

Anyway, I’m trying to get an appointment with my PCP who in my same community–the second opinion endo is in Downtown Houston. The original endo that really wasn’t interested in my case is my same neighborhood. My PCP is in a medical group and if he can’t handle my diabetes, he can send me to an internist in the group on a different floor within the building. The PCP was already handling my thyroid better than the original endo.

Grrr! So frustrating. I really wanted to get my diabetes under better control–it’s slowly creeping upwards–and I feel like I’m treading water.

P.S. I guess I should have known the second opinion endo staff was weird. While I was waiting to get my labs done, a couple came in for their appointment with another endo. They had driven in from a neighboring city about 2 hours away. The receptionist said abruptly that the endo wouldn’t be in and didn’t offer the woman another appointment date/time.

The lady said “she keeps cancelling on me, and you won’t call and tell me in advance. We drove in this morning. I’m finding another doctor. I won’t be back.” It didn’t even faze the receptionist. The husband just shook his head in disgust as they left the office. I guess the staff and doctors don’t care about losing existing or new patients since the doctors teach at the surrounding medical schools.

My PCP helped me get a CGM (hypo-unawareness) and let me use NovoLog for meals (unfortunatley b4 I got the CGM I had a low I didn’t feel until the 20s, I didn’t pass out, just felt like crap) Anyway, after a month on the NovoLog my own first phase recovered enough so I’m just using diet and exercise again to control spikes and reactive lows. What about talking to your PCP about trying Afrezza, the risk of lows is not as bad as with injected insulin because there is no tail, which is what got me that time I went so low. I don’t have an endo right now myself, mine moved and the woman I saw after he left was awful, I never had a doctor make me feel so bad in an appointment.

Lilli2 -

Thanks for the feedback. So sorry to hear about your hypo–that’s what my mom experienced at the rehab/nursing facility and ended up in a coma for a week. She has since three more low episodes/hospitalizations while in rehab since March. The endo has labeled her labile diabetes with possible gastroparesis.

I absolutely love my PCP and he is really helpful in so many ways. I can talk to him about anything–so I will ask him about the CGM and what type of insulin would be best–traditional or the Afrezza. The endo appointment (at the endo’s request) was scheduled to discuss my labs and start me on an insulin regimen or Victoza.

Thankfully, my PCP’s office has responded (very quickly and efficiently) with an appointment for me next Tuesday at 9:40 a.m. My BGs are becoming more unstable each day even though I’m active and low carbing–I think I’m moving out of the honeymoon phase. I was officially diagnosed in August 2013. Based on the initial visit with the second opinion endo I should have been started on insulin rather than remain on diet/exercise after Metformin bombed.