"Squeaky Wheel...alarms!"

Type1Lou
By Type1Lou Latest Reply 2011-09-08 17:02:51 -0500
Started 2011-09-02 12:10:37 -0500

Have you ever had that nagging feeling that what your doctor told you to do just wasn't quite right? In the past year, it's happened to me twice. Once when my GP kept increasing my Lantus dose (even after repeated episodes of scary morning lows..the last landing me in the hospital for 1.5 days) and the other, yesterday when my endo's office told me no changes were in order after only 2 weeks on my insulin pump.

In the GP case, his advice and seeming lack of concern drove me to request a referral to an endocrinologist. When I saw the endo last December, they decreased my Lantus dose, changed the time of day I was taking it from evening to morning,and gave me a sliding scale for my NovoLog. The MDI worked better but eventually, they recommended an insulin pump that I started on August 16.

After sending the endo my last 10 days of BG's, with elevated pre and post meal readings, I was surprised to receive a call from them advising that no changes were indicated. After mulling this over for several hours, I called the endo's office back and asked them to re-examine the data I had sent them since it appeared to me that my basal levels needed adjusting at the very least. Several hours later, they called back to advise that I add another basal interval, increasing the dosage by .05 units/hour. This is giving me the heebie-jeebies! Why should I have to ask them to check their recommendations? (I need to control this STRESS…since it's not good for my BG!)

My point is, TRUST YOUR GUT! Be an informed patient and do not hesitate to ask for explanations or question advice that just doesn't feel right. After all, it's your body and you are paying for their expertise!


17 replies

lori lorchid
lori lorchid 2011-09-07 18:31:45 -0500 Report

Trust your gut, always seems to work for myself, for my family. My GP was the best Dr I thought I ever had, very knowledgeable, friendly, caring,but he accidently forgot to tell me I was diabetic for 2 yrs!!! before I knew something was wrong, and saw another Dr.

Type1Lou
Type1Lou 2011-09-08 08:36:48 -0500 Report

I think we forget that doctors are only human too…just like us. Part of that may be the "Infallible" image our culture ascribes to the profession. We, as patients, have a duty to ourselves (and to our families) to become as informed as we can be and to not hesitate to ask questions and seek better understanding of the treatments prescribed for us. A "good" doctor will invite your inquiries and not resent them. I hope things are working out better for you now.

RAINDANCER1950
RAINDANCER1950 2011-09-02 17:55:42 -0500 Report

YOU MUST BE YOU OWN ADVOCATE…DOCTOR'S ARE NOT GOD…EVEN IF SOME THINK THEY ARE…OR JUST NOT ENGAGING IN REAL LISTENING ,WHEN YOU IN THE OFFICE…YOU MUST CALL THESE LAPS TO THE DOCTOR S ATTENTION…IT MUST CHANGE…OR FOR YOUR OWN HEALTH , AND PEACE OF MIND…FIND A NEW DOCTOR.
I CAN NOT TELL YOU , THE NUMBER OF TIMES , WHILE WORKING , IN HOSPITAL , WE NURSES…CAUGHT SO REALLY CRITICAL LAPSES…IN THE ATTENDING DOCTORS ORDERS…FROM WRITING A DOSAGE OF MDEICATION , THAT WAS OF SUCH A HIGH DOSAGE…THE PATIENTS LIFE , COULD HAVE BEEN AT RISK…TO READING A TEST WRONG…AND MISSING A SERIOUS HEALTH RISK…TO RELEASING A SERIOUSLY ILL PERSON…TO BE SENT HOME ALONE , WHEN THEY CLEARLY , COULD NOT FUNCTION…OR CARE FOR THEIR MEDICAL NEEDS ALONE AT HOME…MOST DOCTORS ARE WONDERFUL , CARING , PEOPLE , WHO ARE INVESTED IN THEIR PATIENTS…AND WOULD NEVER THINK OF DOING ANYTHING BUT THEIR BEST FOR THOSE , WHO PUT THEIR LIVES AND TRUST IN THEM…GOOD LUCK !

ShellyLargent
ShellyLargent 2011-09-02 12:34:19 -0500 Report

When I was going through the adjustment phase on my pump, I didn't listen to my endo since he confessed that he knew very little about them to begin with. I'm not sure which pump you're on, I was on an Animas. Animas was awesome in getting my basal times and rates and bolus ratios set just right. They employ registered nurses and/or diabetes educators as their pump reps. She worked with me for weeks, checking in every day to make sure that I was doing OK. After a few weeks, she gave me the OK to make whatever adjustments to my pump I needed to so that I could eliminate lows and highs. It was also great knowing that she was also a Type 1 and using the very same pump I was. Whenever I had a question about the pump or my numbers, she always had the right answer.

Type1Lou
Type1Lou 2011-09-02 14:13:05 -0500 Report

Thank you Shelly. I'm on a Medtronics pump and really like it. The young rep is very diligent but is reluctant to advise changes without my endo's OK. I believe her background is nutrition which can help with the carb counting. We've adjusted the basal levels twice so far and the carb to insulin ratio once, all with the endo's blessing. I'm guessing we'll also have to change the insulin sensitivity factor and fiddle more with the basal(s) and carb to insulin ratios. I know there is a "breaking in" period and appreciate that my endo set the original pump levels very conservatively, particularly given my prior problems with scary low BG's. I am testing 7 to 10 times a day to gather the data to make the needed changes so I can gain tighter control. I limit my carbs to 120 grams/day. I guess I'm just not a very patient patient…but I'm optimistic.

ShellyLargent
ShellyLargent 2011-09-02 16:25:58 -0500 Report

That's the one thing I hated about being on a pump… The testing… I was testing 8 to 12 times daily. Pretty much anytime I wanted to eat something, I'd test and run it through the pump to see if it needed to bolus. My fingers would get so sore after a while, even testing on the sides and rotating fingers each time. I tried using alternate areas, but that seemed to hurt just as bad, if not worse because I had to go deeper to get enough blood to test. Had huge bruises on my arms from it. Once you get that pump dialed in though, it'll be the best thing for you. I wish you the best of luck with it!

Abby888
Abby888 2011-09-02 12:25:17 -0500 Report

I have the same feeling. I had a couple episodes of low blood sugars where I was feeling really shaky (57 and 65). I called my endocrinologist and she asked what I had to eat. Then she told me if I'm eating less carbs then just lower my insulin dose but she didn't say by how much. So I feel like I am on my own when it comes to my dosages. It really sucks.

Type1Lou
Type1Lou 2011-09-02 14:25:29 -0500 Report

Dear Abby, Are you on a pump or just taking shots? My pump has a bolus wizard feature that calculates how much insulin is needed based on how many carbs I say I will eat and what my blood sugar is at the time and how much active insulin is remaining in my body. If you're on shots, have you been given a carb to insulin ratio to follow? For example, prior to the pump, I was on Lantus (one shot in the morning) and pre-meal NovoLog. My NovoLog dose was based on 20 grams of carb to 1 unit of insulin ratio. (Everyone is different and you have to work with your doctor to find out what is the right ratio for you.) I also had a sliding scale which told me to add 1 unit of insulin for every 50 points of blood glucose above 120 prior to a meal. So, if my lunch consisted of 40 carbs. I would need to take 2 units of NovoLog to cover those carbs. But, if my BG before lunch was 170 (50 pts above my 120 ideal) I would add one more unit of Novolog. So, in that case, my pre-lunch Novolog shot would consist of 3 units (2 to cover the carbs and one to correct the high of 170). It's a bit of calculating and math never was my strong suit. I just ordered Dr Shein's book "Think Like a Pancreas" that I hope will give me even better insight into treating my diabetes with insulin. Part of my program to become as informed as I can be.

Abby888
Abby888 2011-09-02 15:10:12 -0500 Report

No I am not on a pump. I am currently on Levemir and Humalog. Had low blood sugar today. Had eaten lunch and gave myself 30 units of Humalog and then checked my sugar 2 hrs later and it was 68.

Type1Lou
Type1Lou 2011-09-02 15:21:50 -0500 Report

Lows are a bummer. I tend to overtreat them and then go on the low-high roller coaster. I just learned that part of my problem in treating my lows was that I'd eat a granola bar (It's loaded with carbs right????) Well, a granola bar is not a fast-acting carb (Glucose tablets, glucose gell, canned frosting, Dex-4 liquid glucose drink are fast-acting…I just hate the way they taste; I don't like OJ either.) and a granola bar won't bring up a really low BG fast enough. Now I'm carrying the stuff I hate. I think your Levemir and Humalog are analagous to the Lantus and NovoLog I was on. Are you working with a carb ratio and sliding scale for your Humalog? If not, you might want to ask your doctor about that.