I have a friend who has this condition and is having a very tough time controlling it.
She follows all her Doctors instructions and still ends up having to be rushed to the ER several times a year.
She has been to the Mayo and recieved no real help.
A tremendous amount of her time and money has been invested with little progress.
Is this a hopeless case?
Thanks for reading this.

Does she see an endocrinologist? She may need to see one who can get to know her and work more closely with her.

Also, does she keep any kind of diary where she logs her blood sugars, what she eats, and meds? By doing this, it could help in figuring out if she's eating enough carbs (if you're talking about her blood sugars getting too low) or eating too many carbs (if you're talking about them getting too high).

Does she see an endocrinologist? She may need to see one who can get to know her and work more closely with her.

Also, does she keep any kind of diary where she logs her blood sugars, what she eats, and meds? By doing this, it could help in figuring out if she's eating enough carbs (if you're talking about her blood sugars getting too low) or eating too many carbs (if you're talking about them getting too high).

She has seen 2 or 3 endocrinologists but felt they were no help. It seems no one is interested in the more difficult cases.
She is very careful of her diet but I will mention the log to her.
She is thinking about going to Johns Hopkins and I do not see that she has anything to lose by this.
Thank you for your interest.

I hope someone can help her. Tell her not to give up or to give in!
Keep us posted.

I hate to be a kill-joy here, but I have to say that I don't really believe in brittle diabetes. It was a term used commonly many many years ago to explain away blood sugar fluctuations. But today with carb counting, lantus (or similar insulins) and rapid acting (along with pumps) and with modern glucose testing methods, most people can explain about 95% of their blood sugar fluctuations by simply being observant. This means monitoring and marking down what you eat, when, and how much insulin you took for it. If you are having problems keeping control you should be testing (at a minimum) before each meal, 2 hours after each meal, and at bedtime. That's a minimum of 7 times per day. I know a number of people who claim to be brittle that only test 3 or 4 times per day, and that is not enough.

I also have to say that if this person has seen 3 endos and feels that they are not helping her, maybe she is expecting them to do all the work and is not doing enough to help herself. Maybe she doesn't like the advice she is getting and is simply looking for an easier way. Unfortunately, an easy way doesn't exist for us with diabetes.

Sorry to be such a downer, but that term "brittle" is used far too much, and usually used incorrectly.

Cora

I agree with Cora.

What type of insulin does your friend use? What does she eat? How often does she test her bloog sugar? Does she log her blood sugar at all?

Thank you for your suggestions.
She says ---3-15 times per day and my meter keeps a log then I transfer it to paper Dec I had a CBC.also due for one on the 19th .
I know she is very careful with her diet.
Thanks

What type of insulin does she use?

Thank you for your suggestions.
She says ---3-15 times per day and my meter keeps a log then I transfer it to paper Dec I had a CBC.also due for one on the 19th .
I know she is very careful with her diet.
Thanks

Testing only 3 times in a day, if you are on insulin, is a sure way to guarantee that things will go wonky. I know I sound smug and obnoxious, and I'm sorry, but I've learned my lessons. On a bad day I only test 6 times.

BTW, a hemoglobin a1c test is not part of a CBC. It is a special test that needs to be ordered separately.

Cora

true brittleness DOES exist, although I strongly agree that a lot of non-brittle people use the word as an excuse for insufficient testing, and/or failure to measure their food intake properly.

And, among the *FEW* who don't fall into those categories of laziness/inattention/incompetence, there's probably a bunch who have undiagnosed Celiac or other low-level allergy (such as nightshades, etc.).

But there's also just a few of us who fly around for no obvious reason at all: it's not so much that insulin is uncertain in it's DOWNWARDS effects (although that does happen to me sometimes, just a little bit), but rather that strange spikes occur without explanation. Maybe I've got some glycogen-release-control mechanism broken. Whatever the cause, the effect is real.
-----

But in spite of the few of us who DO have true brittleness: No one who isn't testing > 15x per day and measuring every speck of food they eat gets to claim that "I'm brittle". Without proper management first, it's a totally unsubstantiated claim.

(As everyone here knows, I test about 290 times per day.)

If she's REALLY doing everything she can already, then she should try a CGMS. If she has numerous EMT/ambulance visits per year, insurance might cover it. But obviously, testing as little as 3x per day (or even 10x per day) isn't adequate.

Hey Rick. You are right. There are a few cases of true brittle diabetes. But they are rare. And the medical profession bandies the term about like a football. If you have one high glucose reading, an inexperienced doc (or one who only thinks he knows a lot about diabetes) will call you brittle. I've received the label myself a time or two, but I know that what they think are "unexplainable" spikes are often driven by my mood, stress, or the ambient temperature.

Take care.

Cora

She takes Symlin, Lantus ,novolog

My friend says-I have seen at least 9 endo docs and followed strict diets testing 12 times a day and still have problems with my blood sugar before and during my period I aways have fluctuations usually low then very high for about 10 days a month. I am frustrated and no doctor wants to monitor me I nor dietitians I write all the stuff I eat drink exercise and chart blood sugars on a nice chart and they do not even bother to read it so I know what I have eaten that is for me I cannot figure this out alone I have tried there is no easy way around it. I do listen to each and everyone and read a much as I can about it and am always looking for a better way to control it. I appreciate your advice and will consider changes on my part. k

If she's REALLY doing everything she can already, then she should try a CGMS. If she has numerous EMT/ambulance visits per year, insurance might cover it. But obviously, testing as little as 3x per day (or even 10x per day) isn't adequate.
she has been waiting for months for her cgms and the co. has her $1000.00.

Well...it sounds like your friend is doing a lot of things correctly. Is she adjusting insulin doses herself? Healthcare professionals can look over logs with everything on it, but it's mostly for the patient that you log everything. So they can adjust their own doses.

Is a pump an option for your friend?

I recommend reading the book "Think Like a Pancreas" by Gary Schenier. It really discusses how to self adjust insulin in depth.

That would be the Minimed model, yes?

(Dexcom costs less up front and doesn't have such a long waiting list.)

But above, you said she's doing shots (Lantus + Novolog). I think that buying the Minimed as a stand-alone is a weird choice; IMO it should be bought only as a pump upgrade (for model 522 or 722).

EVERY Minimed user I know of owns the pump-based version, even though at least one of them doesn't actually use the pump for pumping. (He uses a cozmo as his insulin pump, but hey, I think he got the 722 for free.)

Good to hear that she already bit the bullet on this. That's the next step, I think. "months" hasn't actually been MORE than 12 weeks, right?

My friend says-I have seen at least 9 endo docs and followed strict diets testing 12 times a day and still have problems with my blood sugar before and during my period I aways have fluctuations usually low then very high for about 10 days a month. I am frustrated and no doctor wants to monitor me I nor dietitians I write all the stuff I eat drink exercise and chart blood sugars on a nice chart and they do not even bother to read it so I know what I have eaten that is for me I cannot figure this out alone I have tried there is no easy way around it. I do listen to each and everyone and read a much as I can about it and am always looking for a better way to control it. I appreciate your advice and will consider changes on my part. k

If it is the hormonal issues associated with menstruation that are screwing with blood sugars, then she is not brittle. Like I said, I really hate that term and it implies unexplainable glucose changes. Maybe what she needs is a really good ob/gyn specialist that can help. I know that mine helped a lot when I was having problems with peritoneal dialysis (dialysis done using fluid in the abdomen). My endometriosis affected it severely and the kidney specialists were at a loss.

I also think that a pump would be very beneficial. While I don't have that many problems with my period, I do typically raise my basal rate when I'm under a lot of stress. I can stay more stable that way.

Cora

I had a lot of problems with my blood sugars and my period for awhile. I went on birth control pills for 2 years, and it helped significantly.

My friend writes--I have been a diabetic for 29 years. no real problems until about 2 years ago gastro distress and a foot sore caused by a doctor. it has not healed . This I am sure cause a lot of my fluctuations with antibiotics and infections. Just this week I had a low of 23 my husband gave me a glucogon shot and it dropped to low on my meter, he gave me another shot and it went up to 11 and he had to leave. my neighbor came by to check me and again my sugar was low . 15 when the EMT arrived they started IV glucose and again checked my sugar was 123, 10 min later it was back to 21 with the IV still running so off to the hosp. my sugar remained in the low hundreds for the rest of the day. I did not take any extra insulin nor was my sugar high when I got up, it was 126 that am. This occurs once a month not this bad but always around my period. I am sure hormones play a role in this. besides charting and monitoring any other suggestions I do have a pump and am on the list for a blood glucose sensor

She has a pump but takes Lantus?

Why would you take lantus and have a pump? The pump can more accurately take care of the basal rate. Did she turn off the pump when she was going low? That should have helped significantly and avoided the second glucagon shot.

Cora

She uses the pump or takes lantus not both at the same time.
Thanks again for your interest.

How often does she go back and forth? It would probably be easier to get stabilized if she stuck with one thing for awhile.

My friend says--I had stopped the pump before my period as per doctors orders and only take lantus when I am off the pump.
Again thanks for your interest.

My friend says--I had stopped the pump before my period as per doctors orders and only take lantus when I am off the pump.
Again thanks for your interest.
She ONLY takes Lantus when she is off the pump?

My friend says--I had stopped the pump before my period as per doctors orders and only take lantus when I am off the pump.
Again thanks for your interest.


This makes no sense at all to switch insulin types. Lantus is much less accurate than a pump. I would suggest she call her pump trainer and see what the trainer suggests for the times of the month when her sugar levels change.

After the first few weeks on my pump I would never have been able to switch back to injections because I wouldn't know the proper dosage. And when she goes back onto the pump, the lantus which remains in the system for a few days would affect the dosage on the pump.

Cora

I had stopped the pump before my period as per doctors orders and only take lantus when I am off the pump.
This is NUTS :dizzy: She switches to the long-acting "I'm committed to an inflexible basal for the next 24 hours" lantus shot exactly on those days when she's MOST unpredictable (from monthly period) ???

The 522 and 722 support multiple Basal rates. She could (SHOULD!) create an alternate (or two) which make a much closer match to her lowered requirements on these special days. But even more important, you can "dial-down" or even shut off the current basal in just a couple of clicks whenever you're trending 'crazy-low'. YOU CAN'T ADJUST A LANTUS SHOT LATER. You're stuck with whatever you took.

I hope that a light goes on on front of her eyes when you relay this post. ;) She should take advantage of the fast-adjusting capability which the pump can give her. Is she elderly and forgetful, or otherwise incapable of handling the Pump?

lANTUS IS SUPPOSED TO LAST ONLY 24 HOURS AS PER
INFO WE WERE GIVEN.
THANKS

lANTUS IS SUPPOSED TO LAST ONLY 24 HOURS AS PER
INFO WE WERE GIVEN.
THANKS

They quote lots of numbers for insulins about how long they are supposed to last. NPH was one of the worst. When I switched to my pump, it took almost a week to get the last of it out of my system. While lantus does last for 24 hours, there can still be residuals. And those residuals compile the more days you are on it.

I have to completely agree with Rick. The worst thing you can do is go to an inaccurate type of insulin during the most sensative time of the month.

This thread has gotten really weird.

Cora

This is NUTS :dizzy: She switches to the long-acting "I'm committed to an inflexible basal for the next 24 hours" lantus shot exactly on those days when she's MOST unpredictable (from monthly period) ???

The 522 and 722 support multiple Basal rates. She could (SHOULD!) create an alternate (or two) which make a much closer match to her lowered requirements on these special days. But even more important, you can "dial-down" or even shut off the current basal in just a couple of clicks whenever you're trending 'crazy-low'. YOU CAN'T ADJUST A LANTUS SHOT LATER. You're stuck with whatever you took.

I hope that a light goes on on front of her eyes when you relay this post. ;) She should take advantage of the fast-adjusting capability which the pump can give her. Is she elderly and forgetful, or otherwise incapable of handling the Pump?
My friend writes--
I am aware that the pump has these features however no one will train me or follow my case with this feature I have contacted mini med and read the instructions but I am not able to do this on my own, my doctor decided it was better to be on lantus a few days a month. I am planning on seeing a doctor on the 27Th of Feb who is supposed to be a whiz at the set up and follow up of mini med pumps also the sensor if I ever receive mine.

is much less accurate than a pump. I would suggest she call her pump trainer and see what the trainer suggests for the times of the month when her sugar levels change.

After the first few weeks on my pump I would never have been able to switch back to injections because I wouldn't know the proper dosage. And when she goes back onto the pump, the lantus which remains in the system for a few days would affect the dosage on the pump.

Cora
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So she doesn't know how to set an alternate basal rate?

I'm with Rick. This IS nuts.

A few generic suggestions.

1. Join Insulin Pumpers. If you don't know what I am talking about, google is your friend. Cora, Rick, and I are all there as well, and I suspect others. I think I speak for all of us when I saw that it's highly educational.

2. Find a new CDE. Your friend is muddling around with some things that should be simple, and I suspect it's adding to her flucuations.

3. Read the books "Pumping Insulin" by John Walsh, and "Think Like a Pancreas" by Gary Schiner.

A few generic suggestions.

1. Join Insulin Pumpers. If you don't know what I am talking about, google is your friend. Cora, Rick, and I are all there as well, and I suspect others. I think I speak for all of us when I saw that it's highly educational.

2. Find a new CDE. Your friend is muddling around with some things that should be simple, and I suspect it's adding to her flucuations.

3. Read the books "Pumping Insulin" by John Walsh, and "Think Like a Pancreas" by Gary Schiner.
my friend says---- I do know all about setting the alternate basal rates I do not know how to regulate it. I am having trouble getting a fine adjustment on i. t I ordered the pump from mini med they sent it to me . then I brought it to my Doctor who knew little about ti but thought I needed one and he said told me to read how to to it and left me to myself I am going to another doctor who does know how to set it up and regulate it on the 27Th so that is what I need to have a person who can monitor and regulate with me. you would think the company may would provide a service to set up and teach a novice how to use and work with the doctor to regulate and answer questions no just to sell a pump, thanks for the general info. I ordered both books and will read them as soon as they arrive.

There is nothing worse than falling through the cracks. I'll tell you what I do when I check and readjust my basals. For overnight, I set my alarm for every 2 hours between 10 pm and 6 am. During that time, since I'm fasting, the only insulin is my basal and I can see what happens with my blood sugars and the dawn phenomenon. Say, for example, my sugar goes up between 2 and 4 am and then stays the same. During that time, I will put in a new basal rate that is a bit higher to compensate.

To check my basals during the day, I will fast and then see what my blood sugars do. Usually I will skip breakfast and lunch to check my morning and early afternoon basal rates and then on another day I will skip lunch and dinner to check my noon, afternoon and evening basal rates. During times when I am checking too, I make sure that I only eat foods that I can accurately carb count, so then I know exactly how much to bolus.

Cora

Yeah, your friend needs to take a more active role in her diabetes management. Does she see a diabetes specialist? Cause it sounds like the doctor she is seeing knows very little about diabetes.

Reading the books I mentioned would really enlighten her as to how to manage some of these things herself.

Also, did Minimed provide her pump training? They should have.

Yeah, your friend needs to take a more active role in her diabetes management. Does she see a diabetes specialist? Cause it sounds like the doctor she is seeing knows very little about diabetes.

Reading the books I mentioned would really enlighten her as to how to manage some of these things herself.

Also, did Minimed provide her pump training? They should have.
My friend writes---
I do know all about setting the alternate basal rates I do not know how to regulate it. I am having trouble getting a fine adjustment on i. t I ordered the pump from mini med they sent it to me . then I brought it to my Doctor who knew little about ti but thought I needed one and he said told me to read how to to it and left me to myself I am going to another doctor who does know how to set it up and regulate it on the 27Th so that is what I need to have a person who can monitor and regulate with me. you would think the company may would provide a service to set up and teach a novice how to use and work with the doctor to regulate and answer questions no just to to sell a pump, thanks for the general info. I ordered both books and will read them as soon as they arrive.

Minimed WILL come and teach you how to use it. It may be too late now though. Worth asking though.

Minimed WILL come and teach you how to use it. It may be too late now though. Worth asking though.
She says that she was promised training(3 times) but everybody came up with an excuse and did not show up.

If an endocrinologist is not interested, have her see someone Internal Medicine. I work for an Internalist who has done wonders for Brittle Diabetics

I would like to tell her that testing her blood sugars before meals and after and in between basically all the time to see what is going on during her day. Is she on a pump? She should be...It takes alot of work on her part. She should have a Dr. she can go to or call for help. Try the Joslin Clinic. I don't know were she is located but my Dr. is great! He is in Syracuse NY. I hope I helped! Jen:)

Holy crap!!! This is so flipping me out! I can'y believe she goes to a Dr. who specializes in Diabetes and he doesn't know how to use a pump? Where are you from??? I don't want to be mean but what the blank is really going on here? I've been Diabetic for 32yrs. been through everything...I am a pump user for 10 yrs. now. I just started taking Symlin. Any way it is the patient who needs to take care of herself fimnd ALL the information and help she can get her hands on! Go to Joslin write them a letter and be sure to mention ALL the Drs. that don't have clue how to help her. How old is she? I would only use the pump. Not any other insulin's. Its good she is on Symlin. But yet I've never been SO confused about anything......I hope she gets help!!! Jen

:confused:

I'm sorry but I have never heard of such a thing!! Where does she live? Go to Joslin Clinic on the web and get her help!!! I hope this isn't a sick joke! She should only use a pump and Symlin. Check her bg all the time and log them. How old is she? Is she an invalid? I've been through alot in my 32 yrs. of being Diabetic but you have to do it for yourself! Drs. are there for help when needed or teaching! Its up to her to help herself!! Jen:confused:

Jen, you put to words the things I have been feeling this whole thread. *sigh*

Where did he go? hmmm........

Anybody else have any ideas about this thread???

I said very early on that it seemed really weird. There were too many strange things going on all at once. How do you see 9 endos and not one of them can help you with your pump and/or problems. And how could you possibly switch between lantus and the pump for half the month?

Cora

No kidding!!!!!!!