New from Minnesota


#1

Good morning! I’ve been reading these forums obsessively the past couple of days so wanted to check in, also I have a few questions. Maybe some of you have had a similar experience and can help?

I’ve been dx as type 2 for past 2.5 years, treated with 500mg of Metformin from my clinic on my worksite. Been doing ok, but noticed past couple of months BG creeping up. The past month I’ve been exhausted, pee frequently, tired and sick feeling all the time. I just assumed this was either stress, depression, laziness or some other failure on my part that would eventually be corrected when I lose the weight I’ve been trying to dump for decades. :slight_smile:

I also noticed that my bg in the past week (had not been checking faithfully before) were hanging out in the 350s a lot and occasionally hitting 400. Can you tell I what a brain fog I was in? I didn’t even notice.

Anyway, finally decided to bite the bullet and see an endo. He wasn’t too excited about me, and was very dismissive of what my meter was saying. He said my last A1C (a month ago) of 6.1 was just prediabetes. I finally showed the doctor my last reading of 364 and they agreed to do a fsg a1c in the office. It was 8.2, up from a month. He got interested then and stated I was experiencing glucotoxicity and was likely type 1/LADA. He’s going to do some labs in a couple weeks but in the meantime he’s started me on Lantus.

I thought I was understanding everything the endo was telling me, but now I realize coming up with this Lantus dose is quite confusing. I’m to start with 10U and adjust +/- 2U with a 50 pt rise or fall.

I do often eat a late dinner, ~8pm with “lunch” at 3pm. Dr. told me not to worry about that as long as I don’t snack before bedtime. I guess I should have clarified as my late dinners are within a couple hours of my bedtime.

Last night I was 264 at bedtime and woke up at 289. FYI - before I ate I was at 160. Should I move up my dinner and be consistent with the time?

My next appt is in 6 weeks with a lab draw in a couple weeks. Does anyone have any idea what I might expect at the next appt? Don’t I need injections after my meals as well? Is he just waiting to sort out the basal dose first?

Also I should say that I felt better over the weekend then I have in a long long time!

I would welcome any comments or suggestions if you’ve read this far!

THANK YOU!


#2

@Amy57

Six weeks sounds like a long time with the BG that you are talking about.

I would suggest to call your Endo and ask for a sooner appointment. This week would be much better. You comment about a fast-acting insulin with meals (in addition to the long acting Lantus) would certainly make sense to be a primary topic of conversation with your Endo.

If your Endo is not able to see you for six weeks, I would suggest calling another Endo and request an appt this week.


#3

Your bg is way too high. I would find a doc who will do tests right away (if you can) and put you on bolus and basal insulin asap.


#4

Email your results from your reports and or cgm. Then followup later that day with a call, one of my endo when he was adjusting my insulin had me call him every 2 days even at home. he gave out his home number. he said he never had a problem with patient calls.

i forgot about hippa. Send your results though a hospital portal or clinic portal if the doc is associated with one, or see if he/she has has a secure fax machine in his unit.


#5

I’m wondering … if the endo won’t schedule you sooner, if a trip to the ER might get them (the endo) to see you sooner and the ER might administer insulin to bring you into a good range?

Also, going low/no carb until you meet with the endo will definitely help. Exercise will help a lot to bring down your numbers.

There are a few great books to help get you started - as well as asking here! The DOC (Diabetes Online Community) is wonderful in helping to sort through a great deal, from newly diagnosed, un/under diagnosed, and those who have 50+ years in.

The books are …

Dr. Bernstein’s Diabetes Solution by Dr. Richard Bernstein

His website is http://www.diabetes-book.com

Think Like a Pancreas by Gary Scheiner

His website is https://integrateddiabetes.com/

And, John Walsh’s (with a few other authors) Using Insulin and Pumping Insulin.

Edited to add: You don’t want to stay that high for any length of time.


#6

What are your fasting blood sugar levels?

You are on a fairly low dose of Metformin.

When first going on insulin, basal (long acting like Lantus) or bolus (fast acting like Novolog or Fiasp) with meals, you do need to adjust until you and your doc find the proper amount of either or both insulin types.

You certainly don’t want to crash with a really bad LOW, but considering the levels you mentioned, it sounds like you may need to be a little more aggressive getting to the proper levels of insulin.

Please keep in touch with us and let us know how you progress.

I would be interested in your daily levels, fasting, pre-meal, and post meal more than your A1C at this point in time. An A1C is an average over time and will not indicate spikes. Someone can have a fairly good A1C if they are going really high and then dropping really low and averaging out. If you are having mealtime spikes, you may need a fast acting insulin more than a long acting insulin. (or both)

Another test you may ask to have done is a GlycoMark. It is a better indicator of mealtime spikes.

If your levels are always high, even without food as a factor, then you definitely need a long acting insulin, like Lantus.

10 units seems to be a VERY conservative starting point with the levels you mentioned, but one that is a textbook guideline starting point.

Did your doc mention WHAT labs he is ordering?

I know your fingers may not like it, but if you test first thing in the morning (fasting), again before breakfast, (if you eat breakfast), before every meal, and two hours after each meal for 3 days, you will get a better idea of whether you are in need of fast acting meal time insulin or if you need long acting insulin.

Since your meals are later in the day and evening, testing before bedtime sounds more like a 2 hour post meal level. If I were you, I wouldn’t bother with a bedtime test if it is close to your last meal.

Be sure you use the Lantus around the same time each day.

I will be looking to hear from you so please keep in touch often.

One last thing, ask your doc if he has a CGM that he can have you use for a week so you both can see what your levels are doing throughout the day and night. They usually have a “blind” one they use for this purpose. The patient doesn’t get to see the results until the doctor sees them.


#7

I appreciate all the kind and thoughtful replies, as well as your concern. It is much appreciated.

This past week I’ve been sick with a cold, and with me those always come with a really horrific cough. Maybe that contributed to the high BG, but the combo together wiped me out. Wednesday evening I woke up to being somewhere in the 400s but so tired and foggy I couldn’t even manage to try to make a doctor’s appt and I considered going to the ER. I ended up drinking a lot of water and just sleeping it off. Left a message for the doctor on Thursday, a nurse called me back asking for some numbers…I still haven’t gotten a response from the office

The cold has cleared but I just don’t understand the numbers. I’ve started reading Think Like a Pancreas (thanks for that suggestion!) and I do wear the Freestyle Libre (started over the summer because I was curious how food impacted the numbers).

I don’t seem to have any kind of plateau or flat line, it just goes up and down in waves between 200-400.

I’m going to watch my mealtime schedule better starting tomorrow and move dinnertime up and pay attention to those numbers.

I’ll let you know how it goes.

Continuing thanks for your information and support!

Amy


#8

Forgot to say also that I think I got close to dehydration, there were a couple of days the coughing was so bad that I occasionally vomited. My mouth and throat were so parched, and urine was a constant dribble (TMI) rather than an intermittent urge. That’s improved as the cold is clearing.


#9

Another great book is Sugar Surfing, particularly if you have CGMS/Libre.

You can see much of the book content on website of same name.


#10

@Amy57

If your BG remains above 400 for 2+ hours, then I strongly suggest you immediately go to the Rochester, Minnesota Mayo Clinic Emergency Room.

Have somebody else drive you.

Regardless of where you live and what other places are closer, this is the most appropriate place to go.

Tell them your Endo said he might be able to schedule an appt in about six weeks but that you thought the situation was more urgent. At that point, let the ER Docs at the Mayo Clinic diagnose and treat you.

This can not wait six weeks.


#11

You’ve received lots of good advice here, @Amy57. You seem to be aware that a late meal is not the best choice for people living with diabetes. When you eat that close to bed-time your body must continue the work of digestion during your initial sleep period instead of getting complete rest and time to make needed repairs. I try to eat at least three hours before sleeping. I find much better overnight blood glucose control. I also get better numbers first thing in the morning.

Keep up with asking questions and making your measurements. It can be informative to write down your numbers. You don’t have to do this forever, but in the short run will help you learn about your glucose metabolism more quickly.

Your were smart to start using the Libre. Good luck!


#12

While your Endo mentioned the possibility of LADA the insulin plan you have been given sounds exactly like what was given to me, I am T2.

There are a lot of T1/LADA that were misdiagnosed as T2 but sometimes the diagnosis was correct. It is good that you have an endo willing to consider both possibilities.

From a T2 perspective what your endo is doing is appropriate, I suspect that it is also appropriate for an LADA in their honeymoon period, if you are coming out of your honeymoon it is not. One unknown at this time is how much is the illness you are describing affecting your BG and complicating your decision making.

Constant blood glucose in the 400 range is unacceptable, keep a very close eye, your fingers may hate you but you will thank yourself. Don’t let yourself hangout in the 400 range for weeks or even days. BG that high can lead to very bad things for someone whose honeymoon has ended.


#13

For someone from Minneapolis I don’t see the Mayo Clinic ER being the appropriate place to seek care. It is out of network for many insurance plans in MN and is a 1-1/4 to 2 hour drive depending where you live in the Twin Cities. And I don’t think that one would necessarily receive better care there for diabetes than at some of the major hospitals in Minneapolis. Mayo is a great place for treating unusual diseases and getting obscure diagnoses and many people in Southeastern Minnesota get their routine care there. But for someone in my part of the state, I think Mayo would be an odd place to go and definitely not where one would want to establish care for a chronic condition like diabetes IMO. But you’re right that if Amy’s numbers stay above 400, an ER visit might be appropriate.


#14

I think the most important thing that you should do is buy Ketone Urine Strips at your local pharmacy. Usually CVS and Walgreens keep them in stock. Then if your results show high ketones or even moderate, an ER visit might be appropriate if you do not get response from your doctors office. If you are not familiar with the symptoms of DKA, read about it and seek care if your symptoms warrant. Your previous dehydration and low Urine output are concerning. http://www.diabetes.org/living-with-diabetes/complications/ketoacidosis-dka.html


#15

The Mayo Clinic is the top rated hospital in the county for Adult Endocrinology.

It is and always be my position that all doctors, all Hopsitals and all ERs are not the same.

For me and my family, we will always obtain the highest quality medical care possibly and I would certainly urge others to do the same.

I completely understand that people have alternative opinions.

Ultimately each person must decide for themselves what is in their own best interest.


#16

I concur with @Laddie regarding visiting Mayo Clinic Rochester ER.

I’ve been thru Mayo (Rochester) twice, each time I spent 14 days there (mostly as an outpatient). If your healthcare provider will cover the costs, super (although it’s quite a process to arrange visits with the appropriate specialist).

Being Canadian, my only method of payment was credit card. The bills were significant at the time (over $30K US) and this was 30 yrs ago. This did not include expenses for living out of motel / hotel for 2 weeks.

Just my 2 ¢’s worth


#17

Dehydration will affect your Libre readings.


#18

Is this over a 24 hour period of time? No flat line during sleep? Are you getting enough sleep?

If you are going above 350 without the influence of food, you really need PROMPT medical attention. Please do not wait until the doc can fit you in weeks down the calendar.

Do you have a PCP, primary care physician, that you can see promptly, before your appt. with your endo?

If not, I would strongly recommend that you seek care NOW from some source, an urgent care facility, or something similar. You don’t want to cause irreversible damage while you wait for an endo to get you on a regimen that will control your blood sugar levels.

Seek care NOW and keep your lab and endo appts. Delaying treatment is not in your best interest.

If you are bouncing between 200 and 400 in a roller coaster fashion, call your endo and demand that you be seen ASAP. If they can’t fit you in, maybe it is time to look for another endo.

Illness will affect your levels but it sounds like you were having this problem both before and after your cold.


#19

Hey Amy57,

I’m in MN too. I’m not sure how far out of the metro you live, but if you can’t get into Mayo for insurance reasons (or somthing), Dr Tressler Works through Regions Hospital in St Paul and a variety of other clinics (like, Health Partners in Anoka, I think). He’s all over town and comes highly recommended by patients (and my Doc in the Western suburbs). People honestly rave about him. I agree with the others that six weeks is too long. But, I’m glad your starting to feel better. P.S. Mayo would be fantastic as a new diabetic (but, it can be an icy/snowy drive and I’m not sure if they are in-network for you).