Another t1d newby

#1

Hi all,

I was diagnosed with (what she assumed was type 2) diabetes by my PCP in June 2016 and was diagnosed with type 1/LADA about two weeks ago.

I’m jumping in with both feet - using a Dexcom G5 CGM since October - and now using Novolog and Lantus pens until I can get an insulin pump.

I like the idea of the Tandem X2 pump, because it’s updatable with new software as improvements are released. If it can talk to my CGM and prevent lows or highs/lows in a couple of years, that would be amazing.

A bit about me:
I live in Alaska, where it’s tough to get in to see an endocrinologist. I was referred to one in October and the earliest date available was April 25, 2017. I didn’t want to wait that long, so booked an appointment with an endo in Florida while visiting over the holidays. Are there any other Alaskans on here who use Anchorage-area endocrinologists? Any words of wisdom?

I travel for work quite a bit and often spend time in remote Alaskan villages, where weather can prevent you from leaving a village of 150 people for several days. There’s usually a clinic in most of the villages, but no doctor. What do I need to bring with me if I may routinely be stuck without access to a hospital for 4-5 days?

Finally - does anyone else travel or live in places with extremely cold weather? What do you do with your insulin when you’re outside for extended periods of time at -20 to -40 degree temperatures? I have an awesome parka with an interior pocket. I’ve been thinking the insulin might get too warm if I keep it right next to my body, but it will definitely get too cold if it’s in an exterior pocket or in my backpack. Advice?

Thanks and I look forward to “meeting” you and participating in discussions!

Elisabeth

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#2

Welcome to TuDiabetes, Elisabeth! Like you, none of us intended to be a part of a group like this but fate intervened.

I only know one TuD member from Alaska, @Sam19. As to how to protect your insulin in very cold weather, I can’t speak from much experience but I do know, as I’m sure you do, that insulin denatures if frozen. If you need to be outside for any length of time in sub-zero (F) temperatures, I would carry my insulin close to my skin so that it could benefit from body heat. I would never leave my insulin in a car, summer or winter. Perhaps you can look for a small insulated box that could prevent or delay freezing. By the way, I would never trust any refrigerator while on the road to keep my insulin safe. It’s too easy for the thermostat to be accidentally set to freeze.

Whenever I leave the house, I have enough diabetes supplies and other meds with me to last me at least a week if something unexpected happens.

By the way, I live in the lower 48 and I scheduled an endo appointment in July for December. Starting with a new endo is usually a wait for most of us. (I thought only the Canadians had to wait for health care!)

I’m glad you found us. This is a special place that has taught me a great deal about diabetes and has helped me find a better quality of life than I thought possible living with the evil-D. I hope you enjoy it, too.

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#3

Hi Elisabeth,
I’d like to say “Welcome to the club”, but it’s not a great club. So instead I’ll say, “Welcome to the forum.” The forum is great. :slight_smile:

You should bring have enough insulin to last you longer than you think you could possibly get stuck! Also extra pen needles, test strips, Dexcom sensors.

Depending on how much insulin somebody uses, a single pen can last people from days to months. So I won’t give you an answer in “pens”. But I’d suggest calculating your daily average, and then multiplying that by the worst case of getting stuck.

If you ever get stuck, never dispose of a pen needle! Keep it in a clean place. If it comes down to re-using a needle or having none, you’ll be glad you didn’t throw it out!

You can keep insulin in an interior pocket and it will be fine. When I was on MDI, the only insulin vials I kept in the refrigerator were the ones I was not currently using. The others I kept in a case in my pocket as I went about my day. I never had a problem with insulin going bad from being in my pocket. An internal coat pocket would be best, because then it wouldn’t be kept right next to your body. If it is in an external pocket, it will freeze though! So don’t do that! Keep it in an internal pocket.

I got snowed in many years ago, and ran out of insulin!

Strips, lancets, pens, sensors, swabs, pen needles - take enough. You will never regret having enough!

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#4

Elizabeth, it’s great to read that you have jumped into the stream of things so fast and efficiently!

The two guys up above have stolen my welcome jokes - someone called it the club nobody wants to join:-)

We live in WI and deal with cold weather all the time - although not as bad as you. As you probably know, insulin can live at moderate temperature for at least 28 days - but really a lot longer, so, if you need to, you can make it last once it is outside the fridge. The official range is 59F -86F. it is reasonably easy to keep it cooler than 86F in hot, dry climate by using a special frio cooling bag. However, if it freezes once it is dead.

Keeping it in your parka is quite fine, but you must be careful to check that the temperature in that pocket won’t go over 86F (or below 59F). It is simple to do: check it with a min-max thermometer in different circumstances.

I suppose that it might be possible to also use a well insulated cooler starting at room temperature, with a bunch of ice packs at room temperature as well, to keep more insulin in as a reserve. I would also use a min-max thermometer to check the range of action as well.

Like @Terry4, I don’t trust refrigerators I don’t know:-) What I do is:

  • I lower the temperature setting to lowest
  • I put insulin on a highish shelf, far away from where the cold air arrives from the freezer, right at the front of the shelf, towards the hinges of the fridge.
  • I block the fridge door very slightly ajar

In the past, we have accidentally broken insulin cartridges, so be 100% sure to bring several spares.

For a glucose testing device, I recommend the FastClix: the lancets are fitted inside a round head, and you can keep on reusing them forever if you want (in case you are stuck somewhere).

If you run out of insulin, it is not as bad as if you run out of sugar and get low. So be darn sure to have lots and lots of sugar stashed everywhere with you. If you do run out of insulin, it is not the end of the world. Between a good bit of exercise and a moderate low carb diet, with 6-8 small carb snacks per day, you should not run into serious trouble for quite some time.

EDIT: the “good bit of exercise” will only lower your BG if you are still making some insulin. Once you totally stop making insulin, it won’t help at all. In fact, if you have high BG and moderate to high ketones in bloodstream you would NOT want to do any strenuous exercise:-)

I have heard that there are diabetes educators that are available for long distance training. This may be an option for you? Also, I would suggest three books that are my favorites: Think like a Pancreas, Pumping Insulin, and Sugar Surfing.

I really like your profile picture:-) If you want to chat about low temperature issues with insulin, feel free to PM me and we can talk. I look forward to your posts!

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#5

Hi itsa… I’m your neighbor to the south (on the KP). I’m not sure how far out endos are booked in anc. I see an anchorage endo who travels to my town and is probably easier to book appointments with in that setting. The key to this condition is self education and there have already been some good recommendations on books etc. that and learning from others experiences on forums like this can be very helpful too. A good family doc should be able to fill your needs just fine in the meanwhile and honestly it seems to me sometimes they’re just as good or better around here for filling scripts and follow up especially once they’re convinced you know enough of the basics to not put yourself in danger with meds. I get the impression from others on this forum that we are pretty fortunate with the caliber of general practitioners here in ak and they seem to be willing to delve in and treat a broader variety of conditions reasonably proficiently than they are in other places. As to traveling and cold weather… cold weather is simple just don’t let your insulin freeze or get way way too hot… it’s much more durable than people give it credit for. I spend a lot of time “off the grid” too with my job and you’ll just learn to plan ahead and before you know it you’ll have a routine down for what to pack and how to be prepared.

Ps— if you’re interested in advice , try tresiba before you decide you need a pump-- I suspect it may change that perspective. Between tresiba, Afrezza, and novolog pens, i literally couldn’t be paid enough to try a pump and my A1C runs in the 5.2 range generally…

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#6

Thanks, all! Really great advice :slight_smile:

#7

@Sam19 - who’s the traveling endo?

#8

I pmd you

#9

I lived in Juneau for a short time and saw a rotating endo Dr. Abbate think he is in Anchorage. Thought he was supportive of my work situation and he supported telework. I grew up in Anchorage. Good luck!

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#10

I just started Tresiba in November and added Novolog insulin as a mealtime bolus. I am doing much better now. The Tresiba I like far better than the Lantus. Lantus only was on it a couple of weeks and switched to Tresiba.

#11

Hello!
I live in Anchorage - nice to meet another Alaskan :slight_smile: - I’ll PM you about endos, there are not a lot in town… I think your parka pocket will work great in the cold, if you’re in -20 or below for a while then I’d add in the frio pouch others wrote about.

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#12

Welcome to TuDiabetes!

Endos book their appointments like clockwork three months out. Everyone with diabetes books quarterly appointments. The best thing to do is ask to be put on a waiting list. People cancel their appointments all the time, being on a waiting list they may call you next week with the news that the “doctor will see you now.”

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#13

Thanks to Eric for reminding me to clarify that: once you totally stop making insulin (you may already be there), exercise will NOT bring your BG down.
In fact, if you are really high (in BG) and have a significant amount of ketones in your bloodstream, the last thing yo’ll want to do is strenuous exercise:-).

I’ll edit the original post too.

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#14

It’s not quite as cold where I live, but I have gone camping outdoors in temperatures as low as -30. I kept my insulin in an inside pocket without incident, and kept it in the sleeping bag at night. I only keep the penfills in the fridge until I start using one, and in 50 years of keeping insulin out of the fridge when in use, I only once had a vial go bad, about 45 years ago, and that one may have been bad to begin with.I take my pen with me, in a shirt pocket, even on hot days, with nary a problem. You’ll develop your own ways of coping. You’ll be fine.

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#15

Elizabeth, forgot to mention: any pump that has tubes is potentially subject to freezing. I have heard of a cross country skier who does not use them because he once froze his pump tubes. The Omnipod does not have tubes, so it may be better adapted?

I am sure that endos in Alaska are particularly versed in the subject, so they will have some good idea of what is appropriate.

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#16

Thanks!

#17

That’s really interesting. That’s the same reason we don’t use camelbak water tube systems in the winter up here. It makes sense that a x-country skiier wouldn’t want tubes. They often don’t wear much warm clothing even in really cold temps. Maybe I’ll invest in a waist warmer/pump holder :wink:

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#18

Why do you like Tresiba better?

#19

Lantus has been around for 20+ years and every primary care doc in the country is familiar with it… tresiba is pretty much new but is very quickly becoming the gold standard for long acting basal insulins. It is more stable than lantus, lasts longer, is more forgiving, lasts longer in the pen, and is pretty much superior in every way in my experience… it’s ultra long action makes for essentially no peaks and valleys in its coverage, which I contend is not actually possible with lantus or even with an insulin pump (others disagree)

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#20

I like Tresiba better because the Lantus wasn’t working for me (10.9) with one month on Tresiba I’m at 7.7 and dropping…I have some lows but overall MUCH MUCH better control more even and less spikes. For me spikes are hard to get down as there is some resistance with them as well…

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