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Location: Minneapolis, Minnesota, United States

Diagnosed with Type 1 diabetes in April of 1980. I recognize the incredible mental struggle of living with diabetes. I hope to share my struggles, my successes, and everything in between.

Thursday, June 30, 2005

Hypoglycemia Unawareness

My control seems like it's been a lot better lately. I'm spending much more time in the mid to low 100's rather than above 200. I credit much of this to my using the more advanced features of my Cozmo pump. The features I've started using more often are the following:

  • Bolusing by grams of carbs vs. straight units of insulin. I used to do the calculation in my head and just enter the amount of insulin in units. I would total up all the grams of carbs, then divide by 8 (1:8 ratio) which would give me the amount of insulin needed. Now I just enter in the carbs (the Cozmo has this great "Meal Maker" feature which allows me to enter each item individually and it totals it all up - a fancy calculator) and IT does the necessary calculation for me. I think this also helps keep me honest. I figure there were many scenarios where I didn't want to own up to how many carbs I was eating for a snack or something, and would just "punch in" a handful of units. This would start the rollercoaster effect and I'd be riding it until I was motivated enough to stop it.
  • Trusting the pump. The pump has an adjustable "duration of insulin" figure and keeps track of the amount of insulin "on board". If you tell it to, it will factor this amount into any boluses entered while there is insulin "on board". I trust whatever the pump suggests for the most part (unless it is totally ridiculous, which has never happened yet).
  • Using the "Correction Bolus" more. Pretty much anytime I test my blood sugar I will enter it into the pump (or use the CoZmonitor which attaches onto the back of my pump) and ask for a correction bolus. If the pump calculates that I don't actually need any insulin it will "suggest" a bolus of 0.00 units. This really helps keep me closer to my target (100). Another way I use this is to avoid lows. If I do a test and come in at say 119, but I still have some insulin on board, I know I need to have a little snack to avoid a reaction in the near future.
  • Using the "Combination Bolus" more for my fatty meals. This option splits my meal bolus into a portion that delivers some right away and some over a period of time. Even splitting a high fat or protein meal into a 70%/30% split seems to make a big difference. I certainly don't have it down to a science, but even just experimenting with it more is making a big difference.

Where I'm going with all this is as I spend more time with a BG closer to my target, I've noticed that I'm not feeling my moderate lows as much as I used to. I used to feel symptoms at very close to 70, sometimes even 80'ish. Now I am surprised when I do a test to find myself mid to low 60's or even 50's and not feeling any noticeable symptoms.

As I thought about posting on this topic I wanted to check into some details about it. I have a copy of "Pumping Insulin" by John Walsh and Ruth Roberts at work here, and there is a small chapter dedicated to hypoglycemia unawareness. There is a whole list of situations that can trigger this, and they say the major culprit is frequent low blood sugars. With that in mind, I'm quite sure that I've had more lows lately - which happens as you tighten your control.

Have any of you had problems with this? What have your experiences been? Anyone able to deal with it in a positive way?

On a somewhat related note, I attend a monthly pump group in the area. It's a nice social atmosphere and I've gained a lot from the group. On occasion we have a guest, and last year we were visited by a woman who had severe problems with hypoglycemia unawareness. She has enlisted the help of a service dog! It was the most incredible meeting I've been to! Her service dog was still in training (the tests & training are incredibly thorough) but he had successfully caught a handful of lows that she was not aware of. It was really something special. I do think we'll see more of that type of thing as more people become aware of other services these special dogs can provide. There are also many people that have stories about their cats and dogs helping them wake up at night during a reaction, etc. I think it's pretty neat!

10 Comments:

Blogger Chandra said...

I'm currently using a MiniMed pump and saw the Cozmore booklet in my Doctor's office today.

It says it can use any infusion sets, but I somehow don't believe it will hold mine (I use Siloettes by MiniMed), anyway - did you switch pumps, or is this your first pump? And if it is your first, do they have infusion sets for the pump, or did you have to find your own?

Thanks.

10:18 PM  
Blogger Scott K. Johnson said...

Hi Chandra,

I started pumping quite a while ago. I started on the Disetronic H-TRON+, then moved to the Minimed 508 and then to the Cozmo about a year ago. Using both the Disetronic and Minimed for about 4 years each.

The Cozmo insulin cartridges use a standard luer lock connection, so they are compatible with any infusion set except for the proprietory Minimed Paradigm series (which don't fit anything except their Paradigm pumps).

I currently use the Minimed Quick Set with my Cozmo pump because I love the adhesive (doesn't come off when I exercise or get it wet) and it has an inserter device.

So, to answer your question, yes the Cozmo folks can supply you with infusion sets, but you are also free to use anything that has a standard luer lock connection.

Let me know if you have any more questions! Thanks for reading!

10:53 PM  
Anonymous Kathleen Weaver said...

I've found that there are two kinds of "lows". One is a crashing low that has to be treated or something bad happens, and the other I just slowly gradually go into those. The gradual ones never cause a problem, but I personally feel better if I pull them up.

On the diabetic detection dog thing -- I hate to break this to you, but there are a lot of scam artists in the detection racket and in the dog business. I've personally been ripped off by one, so I'm very hestitant to trust them. The sad part was the one that was a rip off was an independent third party who was certifying other parties.

I'd run background checks, talk to the creditors etc. before I would ever get involved in any type of assistance dog, and I would run the other way if they want money from me. The reputable assistance dog people give the dogs away and get funding from third parties.

12:10 AM  
Blogger Scott K. Johnson said...

Wow Kathleen, that's very frustrating. Sometimes I feel like chronic things like diabetes bring the dang leeches out of the woodwork!!

I guess I'm not completely surprised by there being some deception and scams, but it is frustrating.

From my uninformed point of view this particular set up seemed legitimate. It was being done through the "Hearing and Service Dogs of Minnesota" (www.hsdm.org), which has been in operation as long as I can remember (their building is near the neighborhood where I grew up).

I can certainly see the importance of making sure the service provider is legitimate, because I remember it seeming to be very demanding of the person being served by the dog. If I remember correctly as well, the person being served does not "own" the dog, but rather is served by him/her as long as the dog is able, and then if necessary other arrangements are made when the time comes when the dog is not as able (as they age, etc.).

I trust that you have had many experiences, both good and bad, with your time in the field with your girls.

Thanks for bringing this up, I don't think many people are aware of the scams, etc. that may be out there!

BTW - thanks for featuring my "Pros & Cons" list on your blog - I'm honored! I had a typo in the title, which I've fixed. I think I need to hire a proofreader...

8:01 AM  
Anonymous Anonymous said...

Hi, my name is Allison, I'm 19 years old and I found your blog while surfing the internet's diabetes blog sites. Anyway, the reason I'm writing is because I have a website called Teen Talk and I was wondering if you could post a link. It's a chat/website for teens with diabetes and you can visit it at www.diabetesportal.com/teentalk. What do you think? You can email me at amblass@aol.com. Talk to you later! - Allison

6:48 PM  
Anonymous Anonymous said...

I am a 50 year old male. I used a pump 22 years ago when they were very new and I nearly lost my life. I have had Hypoglycemiaa Unawarenes for 25 years. I've been hospitalized 47 times. I've been a diabetic for 35 years and am currently 50 years old. I am disabled and have been for 15 years all due to the hypoglycemia unawareness problem. My endocrinologist is currently trying to get me to attempt the pump but due to money shortages being on social security disability it is going to be tough! It will cost me $100+ per month to go on the pump. Any suggestions would be appreciated. My endocrinologist says that I am the worst diabetic he has seen in 30 years. I hope I've not bored you. Thanks for listening.Kim Mills

1:57 PM  
Blogger Scott K. Johnson said...

Hi Kim! I don't usually have the time to respond to every comment that get's posted here, but I had to make some time for this one!

I'm sure that pumps were MUCH different 22 years back, but I am very interested in hearing the details on what happened that you almost lost your life! Sounds very scary & traumatic!

It is my opinion that there is no such thing as a "bad" diabetic, nor varying degrees of severity. It's kind of like pregnancy. Either you are diabetic or you are not. Now we each have our specific struggles, and it sounds like you definately have your share of things to deal with.

It is also my opinion that the pump is the best tool for the job for SOME PEOPLE. You need to be able to do some troubleshooting, and also be able to put up with a sometimes rough adjustment period. Some people are not good candidates for the pump. That can also depend a lot on the support team you have (good pump training, good endocrinologist, educators, etc.).

The finances all depend on your insurance, and it sounds like it may be financially tough for you to start the pump and maintain monthly supplies. There are some companies that may be able to provide grants or other help, but I don't know any details.

You may check with the folks over at www.insulin-pumpers.org. It is a very large pumping community, and I would think there would be someone with similar circumstances that might be able to provide some additional information.

I hope this limited information is at least a little bit helpful.

Good luck!

2:40 PM  
Anonymous Anonymous said...

Hi Scott,

Thank you so very much for your reply. It was quite helpful. I will visit the sight insulinpumpers.org to see the information they can deliver.

When I first went on the pump 22 years ago I was plauged by continuous low spells and was found unconscious in a fast-food restaurant when I ended up at the hospital my blood sugar was 8. I didn't wake up for 4 days and they called all my family in, thinking I was not going to live. I made it needless to say!

Thanks for your input Scott.

Kim Mills

12:33 PM  
Blogger Scott said...

Hey Scott,

I'm not sure if my first reply worked, so I'm posting again. I found your blog from a link in another blog, which I found on another blog ... Anyway, hypoglycemia unawareness is a serious complication, but because there is really no effective treatment for it other than to ease up on control (making yourself more vulnerable to long-term complications), I've found that many doctors, including many excellent endocrinologists, are quite ill-equipped to deal with the issue. Many avoid the issue, offer to write you a prescription with for more test strips, or send you to a CDE, My own CDE had never ever heard of a useful program called Blood Glucose Awareness Training. Considering she is a diabetes educator, I was rather disappointed.

For some people, temporarily easing up on control and avoiding lows at all costs will help to restore symptoms, but you should beware that it does NOT work for everyone. For me, easing up on control did absolutely nothing to restore hypoglycemic symptoms. The issue stems from the fact that in patients with T1DM, the islets are destroyed by the immune system, and the islets contain not only insulin-producing beta cells, but also glucagon-producing alpha cells, the body's primary counterregulatory response after cutting off insulin production (something those of us with diabetes don't have the luxury of). Over time, the epinephrine (sometimes called the adrenaline) response becomes blunted or reduced, resulting in hypoglycemia unawareness. It is generally a bigger issue for patients with Type 1, since most Type 2 patients have a fully-functioning counterregulatory response, but they are insulin resistant.

The medical literature has several well-written articles on this topic. See the following links:

http://spectrum.diabetesjournals.org/cgi/content/full/15/1/20

http://care.diabetesjournals.org/cgi/content/full/26/6/1902


I discovered a program by accident called Blood Glucose Awareness Training (or BGAT) developed by researchers at the University of Virginia Health System. The program teaches patients to combine "external" information (like when you ate and what you ate, when did you last dose insulin, what kind of insulin was it, etc.) along with internal clues to better estimate what your blood glucose levels may be at any given times. I also found that attending the class with others who are experiencing the same issue was very useful. The group can discuss common issues, etc. that helps everyone to discover common issues, and find ways to deal with it.

For your info (as well as for your doctors and diabetes educators), Blood Glucose Awareness Training appeared in the respected diabetes journal Diabetes Care. See the following URL:

http://care.diabetesjournals.org/cgi/content/full/24/4/637



The University of Virginia has developed an online version of BGAT called BG@HOME. It will be available in the near future. Check out their website at:

http://webcenter.healthsystem.virginia.edu/bmc/bgathome_temp/index2.htm


If you're interested, check out my blog at the following URL:

http://care.diabetesjournals.org/cgi/content/full/24/4/637


Also, feel free to stop by the Yahoo Group I started. It was meant as a place for displaced DiabetesPortal/DiabetesStation people to go, but its open to anyone who wants to join. There is an extensive library of links there, and those are open to both non-members as well as members. The URL for the group is:

http://health.groups.yahoo.com/groups/DiabetesPort


Hope this info is useful!

Regards,
Scott Strumello

9:09 AM  
Anonymous Anonymous said...

Refer to Diabetes for
useful information

2:02 AM  

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