Misdiagnosed Upset & Scared!

[LoriAnne]

I was told for a few years that I was Type II, finally got the doc to send me to a Endo & come to find out, I'm a Type I. I'm having a really hard time with this. I'm on a load of Insulin & scared senseless. My bs during the day 120-140 but my fasting blood sugars are insane. I'm only consuming about 40 to 50 grams of carbs a day. I no longer eat with my family because they can eat what they like, & it's torture for me. I'm on 22 units of humalog-10 units of byetta for breakfast 6 units of humalog at lunch & 22 units of humalog- 10 units of Byetta at dinner. I'm on 86 units of Lantus at night. I'm no expert but that seems like an awful lot of Insulin. Endo says I'm incredibly inisulin resistant & I think my pancreas hates me.
I'm very depressed now & scared cuz I have two beautiful little girls who happen to be Autistic that I need to be here for.
I'm trying so hard to do this right, I don't know why I can't get these **** fasting BS down & I'm sure you can all relate that if your fasting BS is high it screws your whole day. I go up 30 to 70 points over night. The lowest I've gotten my fasting is 115 & that was when I ate very little & my bedtime sugar was 85. Please, any help,advice encouragement would be so appretiated. If it were'nt for my little girls, I think I would just give up. :( :( :( :( :(

PS- I also forgot to mention, my endo is highly recommended but the biggest jerk I've run into in a long time. I fear I may smack some empathy into him soon.

[princesslinda]

Have you been tried on metformin? It might help you require less insulin as it does help with insulin resistance.

I'm T2, so I can't help a lot, but i'm sure sorry you're going through such a rough patch. I'm sure some of our T1 family will be offering lots of advice soon.

[fgummett]

Hang in there Lori Anne :)

I know what you mean about your girls... I've had some pretty overwhelmingly dark depressed times in the past and it was having my son who kept me sane.

I can only imagine how much work 2 autistic children must be but somehow you are going to have to find a balance to take time for your own care as well.

Someone will come on here and give you better advice than I can on your insulin so hang tight :)

~ Frank

Your endo may be a jerk but is he any good? By all means smack some empathy into him:T

[LoriAnne]

Thank you Frank & Linda. :) My dad's side of the family were all diabetic but did'nt present till adult hood. Every member except for 1 is diabetic. **** genes! LOL

My endo has been recommended by my new doc & my kids pediatritian. It's hard to get around his holier than thou,abrasive personality. Almost felt like being a diabetic is a character flaw. Maybe I'm being touchy? Grr he just rubs me the wrong way.

[notme]

LoriAnne, The best endo in the world won't do you any good if you don't like him and avoid going. I would find one that you like and will work with you. I went through about six before I found one that I really liked. He works hard to help me and is always supportive.

The amount of insulin you are taking is a large amount. I agree with Linda that you might want to talk to your doctor about metformin to help with the insulin resistance. The other thing you can try is a small protein snack at bedtime to help with the Dawn Phenomenon that you may be experiencing.

[morrisma]

Sorry about the fear - its something we all feel.

The good news: All your numbers sound okay - mostly under 140 where damage begins - so please try to be less stressed.

Fasting numbers:
The overnight numbers will take some work to determine exactly when & why they are rising. Try to talk your endo into getting you a 3 day cgms (continuous monitor) to use. That will give you a graphical analysis of whats going on every few minutes for three days. If he can't or wont get one for you, you can do it yourself but it requires fasting and getting up through the night to test. Google "Basal Testing" for more info.

Whichever way you do it, the idea is to determine if you are going low overnight causing your liver to dump glycogen or if your are experiencing a dawn effect where the hormones your body secretes naturally as you get ready to wake up are triggering your liver to dump glycogen. Both are caused by the same dumping action but are treated VERY differently. You may be eligible for a pump if it's a dawn effect issue.

The other question I have is: Are you using a fixed amount of insulin at meals or do you use a sliding scale to correct for highs and account for the carbs you are eating. The sliding scale is more work but much more effective.

Cheers

[kgm0612]

LoriAnne..........I'm sorry to read you're having such a difficult time. This disease can be very frustrating at times because what works one day doesn't necessarily work the next.

It's important to test your blood sugars often and it may help to keep a log of the foods you're eating so that you'll know which ones you do well with and which ones you need to cutback or avoid altogether. You shouldn't avoid eating meals with your family just because they are able to eat whatever they want. You can have the same food items, just in moderation.

Hang in there, I promise you things will get better with time.

Karen

[howdysf]

Hi Lori Ann, not sure what your exercise regimen is, but exercise really really combats insuling resistance (IMO).. I find that if I'm sedentary I need way more insulin and my bg's are often high, if I"m active it's the opposite... everyone is different, but that's what I've found in the short time since I've been type 1...

[grace girl]

I understand a lot of what you're going through...I was also mis-diagnosed orginally, and when I finally got the correct diagnosis almost two years later I was very, very shocked and also extremely angry. Since being on this forum I've learned that being misdiagnosed is a lot more common that I would have ever thought.
My two cents worth:
1. Find an endo you like, or at least can be comfortable with. If you can't stand him, there are problems to come. The endo works for you...
2. Educate yourself! Get a copy of Using Insulin by John Walsh. Learn how the insulins work, and what you can do to learn how they work best for you. You are your own best advocate!

And, btw, it gets better.

[LoriAnne]

I use a fixed amount of insulin & I usually have a piece of cheese for a nighttime snack. I have noticed if I go for a walk my BS does improve. Do you all think taking a walk at night could help my fasting BS?

I wish I had a better understanding on how diabetes works. Does anyone have any suggestions on books or websites so I can get a better understanding of diabetes?

Oh & THANK YOU all for the kindness & help. :)

[fgummett]

David Mendosa's site including his Advice for Newbies (http://www.mendosa.com/advice.htm)... is must-visit :)

You are very welcome Lori Anne.. please keep asking questions and letting us know how things are going for you and your girls :)

---

Oh.. by the way don't be put off my Mendosa's site being aimed at type 2... it's still all good stuff

[Mich]

Hi LoriAnne,

Welcome to the group. Don't feel like the Lone Ranger any more, we all felt scared when we first learned we were diabetic. youve received some good advice here so far. It won't be so different than how you treated your diabetes before, just a new way of treating it.

Get the books THINK LIKE A PANCREAS by Gary Scheiner and keep it right beside you until you feel more knowledgable. The author is a diabetic himself and a diabetic educator and explains things clearly.

You can eat with your family. You need to do it for them and for you. You will eat basically the same things, but pass on the high carb things, or just have a little bite. You'll eat green veggies, meat, salad and a little whole grain bread. Your family will learn to take it happily in stride when you put out dessert and they get most of it except for a tiny bite or two!

I second Nancy's suggestion to find an endo that you like and trust. It it absolutely necessary for you to feel comfortable with him or her. Go with your feelings, no matter how famous they are. It usually takes me 1-2 tries before I settle on one in a new city. You need one pretty quick, or will have to work with the one you have for now because you need to get your medications straight.

People still are finding different "types" of diabetes, or at least finding new ways that the old types work. Don't let your "type" scare you too badly, we all deal with it slightly differently but we're all in the same boat. It is normal to have a big meltdown regarding your lifespan at diagnosis when you have kids. I had a small one after each child was born--letting my mind run away with thoughts of my motherless girls. :eek: Well, I'm in my 49th year after diagnosis. It's really not much of an issue.

We are so glad you found us. Looking forward to getting to know you.

Mich

[shiftzor]

I use a fixed amount of insulin & I usually have a piece of cheese for a nighttime snack. I have noticed if I go for a walk my BS does improve. Do you all think taking a walk at night could help my fasting BS?

I wish I had a better understanding on how diabetes works. Does anyone have any suggestions on books or websites so I can get a better understanding of diabetes?

Oh & THANK YOU all for the kindness & help. :)

I think as someone has already said exercise would really help you here. Walking is a great way of doing it, finding a sport you enjoy or finding any activity will help your insulin resistance. The more you can reduce your insulin resistance the easier it will be to manage your bg.

First sort your basal out, do basal testing which is basically skipping breakfast/lunch and testing every hour. If your bg raises it means you don’t have enough basal and vice versa.

Secondly start carb counting, which will allow you to eat meals with your family of different shapes and sizes. Start testing, test pre-meal and then 2hours-2:30hours later, giving you a feel for if the carb counting is working and allows you to adjust your ratios. Don’t be afraid to have a different Insulin:carb ratio in the morning/lunch/dinner. That "rule" is just a guide, you are probably producing insulin so its probably not going to be exact for you.

Above all else write carbs intake, insulin doses and bg results down, allows you to see patterns and adjust accordingly. Downloading your monitor reading to your computer using a data cable and software provided by your meter company might help you, it gives you graphs and things.

Carb Counting 101 (http://www.diabetesnet.com/diabetes_food_diet/carb_counting.php)
Carb Factor From The 500 Rule (http://www.diabetesnet.com/diabetes_control_tips/carb_factor.php)

Other info
Eating well - Diabetes UK (http://www.diabetes.org.uk/Guide-to-diabetes/Treatment__your_health/Eating_Well/)

Get this book will explain all of this and more.

Using Insulin

Basal = Lantus
Bolus = Humalog

Now that i got all that out of the way good luck and keep asking questions! Its scary at first but all is not lost. ;)

[LoriAnne]

Thanks everyone for all the supportive & informative info. I don't feel so "all on my own" now. :)

Just got the results of my blood work, what I can remember..

A1c:7.0
Triglycerides: 300!!!!
HDL:34
LDL:32

Ok, so I'm at a loss. I've been eating at most 50 grams of carbs a day (screwed up a 3 times) Is there any other reason Triglycerides can be so high? My HDL & LDL is hereditary, Mom was the same way. Confused, that's me!!

[princesslinda]

Maybe your high triglycerides can be correlated to your high fasting #s. Usually high blood sugars and high triglycerides go hand in hand......or, it could be just hereditary.

Of note, my HDL was 23 and doc advised me to start exercising, drink a glass of red wine at bedtime and take fish-oil caps...3 months later it was 46 and is now 48....I can't seem to hit the "over 50" mark yet.

[LoriAnne]

How much fish oil do you take Linda, I've bought some a few days ago but not sure how much to take, I also bought cinnamon tablets as well.

[princesslinda]

How much fish oil do you take Linda, I've bought some a few days ago but not sure how much to take, I also bought cinnamon tablets as well.

I take 3 of the 1000 mg/day....I just use the ones from GNC, though i've heard the prescription ones are better...but I have seen good results so i'll go with the cheaper ones for now.

You can also sprinkle cinnamon over your food or in teas or cocoa. I took the cinnamon caps for awhile, but they bothered my stomach (heartburn and cinnamon burps:eek: ) so I just add it to things now.

I was never a wine drinker, don't like the taste, but I do drink a small glass 3-4 nights a week...I sleep better with it as well. ;)

[LoriAnne]

LOL I'm thinking about doing the wine as well. I have noticed that I seem to dream alot more now, they wake me so hopefully the wine will help me sleep better as well. I cant stand the taste of wine either so I won't worry about becoming a wino on top of everything else. LOL

[Mich]

Those of you who don't like wine may want to try something a little sweeter to start. Several of the whites (that come in tall skinny bottles with no "shoulders") like Riesling, Gewurztraminer or Sauvignon Blanc (bottle has shoulders ;) ) A White Zinfandel is also sweet. These can ease you into regular Zinfandel, a red with the same taste as White Zin, but less sweet.

Try a Pinot Noir, another red with a milder flavor.

And of course if you don't like wine and this is really medicine to you (??!!) a little glass of Mogan David grape wine will taste just fine and do the job nicely.

Mich
A wine fan. With an HDL of 68

[HelenM]

I think its all a package. Lower the BS and the higher triglycerides might go away . I agree with what others have said about getting your insuli right and learning how to dose according to what you're eating rather than the other way round. Hopefully you'll be able to do that with the help of your new doctor (unlike some of the others I would suggest you stick with him for a while. I didn't like my diabetalogue when I first met her but now we understand each other we get on very well)
Half an hours exercise a day may well go some way in reducing both insulin resistance and triglycerides. It doesn't have to be running! The more exercise I do, the less insulin I have to take.
Personally I can never remember to take pills, I have a very expensive and almost full bottle of cod liver oil capsules that I bought when first diagnosed. I don't however forget to eat:D
and try to eat two-three portions of fish ( at least one oily)each week. (actually I eat a normal 'balanced' diet)
My triglycerides were 250 at diagnosis, in March they were 64, HDL has gone up from 40 to 62. The biggest reduction was in the first couple of months when my BS got under control but since then there has been a steady reduction and a gradual increase in the HDL.

My husband has an heriditary high triglyceride level, he does (when he remembers) take a small dosage of fenofibrate every day. His levels are now fine ( but whether its the diet or the pills I haven't the foggiest idea)

[BlueSky]

Exercise will definitely help. It increases insulin sensitivity. So you should have better fasting numbers. Taking metformin before bed should also help.