Lost As Newly Diagnosed, Confused, and Overwhelmed. So many questions!

spiroll
By spiroll Latest Reply 2014-09-12 17:11:35 -0700
Started 2014-09-08 14:04:34 -0700

Hi everyone,

This is my first post, although I've been reading this site for several weeks. And I'm so very sorry that it ended up being such a LONG post :(

I was diagnosed diabetic by my ob/gyn at a regular yearly check-up about 6 weeks ago - she noticed that I hadn't had blood work done in a long time, so she ordered it - which led to "You're diabetic. Contact your family doctor." (I wish she would have been gentler about telling me - it was devastating to hear it so abruptly.) So, my A1C was 8.2%. I had no idea what that meant, and I still don't know just how bad that is. I don't know a lot of things.

I finally got in to see my (new) family doctor (GP) 3 weeks after I was diagnosed. During that time I had already started eating low carb. My doctor gave me a 40 minute "New Diabetes Patient" visit - where he explained what diabetes is and then drew a picture of a salad plate (he said to get rid of all of my dinner plates) and then drew a line dividing the plate in half. I was supposed to eat 1/2 a plate of vegetables. In the other half of the circle he drew a line to divide that in half. One part was supposed to be protein - the size of a deck of cards, and the other section was for carbohydrates, including pastas, grains, and sweets. I was so confused. My husband has been eating low carb for 9 months and has lost 60 pounds, his blood pressure has never been lower (120/78) and his blood sugar has gone from pre-diabetic to completely normal. When I told the doctor this he said to absolutely not go on an Atkins (or any) low carb diet because, sure I'd lose some weight maybe, but that it just wasn't something people could benefit from, let alone maintain. I don't agree with that…but I'm unsure of myself because I don't want to end up not listening to him and then damage my organs.

I'm 42 years old and I have panic disorder with agoraphobia. 5 years ago I got a new doctor to treat that and they put me on a blood pressure medicine, a beta-blocker, called Toprol. She ordered standard bloodwork, including an A1C, and my blood glucose was fine. Not perfect, but fine. About 2 months later I had my yearly physical and got a call from the doctor that my blood glucose and cholesterol numbers must have been incorrect because they had skyrocketed from last year, so go in and get rechecked. I didn't do that. I was afraid they'd take me off of the Toprol, which essentially cured my panic attacks. I was not at all concerned about the blood glucose - just the cholesterol, because I never used sugar - I mean, we didn't even keep any in our house - and I only ever ate once a day. I was, however, very overweight from the antidepressants I had been taking. (Close to 300 pounds on a 5'4" frame.) I swore up and down that I didn't overeat - but nobody ever believed me. Antidepressants DO cause weight gain for me - but my new doctor said that's not true. (I had not had a yearly physical since 5 years ago when the told me the cholesterol and BG were so high because I was terrified that they'd make me stop taking the Toprol - that is how terrifying panic attacks are!)

So, fast forward to my first appointment with the new GP, and I mention the Toprol - and he said that there was no way it could have caused my diabetes because diabetes is something that you get after 15 to 20 years of abusing your body. (I didn't think that sounded like me…but who am I to argue?) He gave me no literature on diabetes, and basically the only thing I walked out of that appointment with was a Freestyle Lite monitor and 10 test strips. He never even told me how often to test myself - or when, or what the results would mean. I am still befuddled/confused/unsure/scared.

So, I decided to stick with low carb. I don't know if I've lost any weight yet - it's only been 10 days. (And of course my appointment was on a Friday afternoon and OF COURSE the nurse forgot to call in my Rx for test strips - so I only had the ten that came with the kit until the following Tuesday, because Monday was a holiday —- this is the kind of luck I have in my life.) I don't know how often to test so - for instance - on Wednesday of last week I blew through 17 test strips.

My morning test numbers are all over the place - ranging from 136 to 164. Then again, I don't sleep very well - some nights might be 3 hours, and (very rarely) some nights might be 9 hours (like last night, which was only the 2nd time I'd slept longer than 4 hours in weeks.) I don't understand what those morning test numbers are trying to tell me.

I have to take my medicine in the morning (and evening), and I truly believe it is raising my BG - so that it affects my post-breakfast number. For instance, I bought those Glucerna shakes and I woke up at a fasting BG of 142 and then 2 hours after my medicine and that shake my BG was 256. I freaked out and gave the Glucerna's to my 11 year old son, vowing never to touch them again. But was it the Glucerna or the Toprol? Well, on Thursday, I woke up at 136, took the Toprol, then waited 2 hours to take my pre-breakfast BG, which was by then 190, and 90 minutes after a low carb breakfast, it was 166. I'm so confused. :( Why did it go up from 136 to 190 if I hadn't eaten anything? (I did drink my morning decaf coffee, which when I tested, did nothing to my BG numbers.)

Gosh, I realize that this post is all over the place, but I am really overwhelmed!!

I started testing my BG before meals, at 90 minutes, and then again at 2 hours after. Was that the right thing to do? I did that because initially I tested every 30 minutes after I ate something to see where the highest number would be and where it started dropping. It's highest at 90 minutes - so should I be reporting that number, or the 2 hour number, which is always lower? And if so - why is mine higher at 90 minutes when everything I read says to test at 2 hours? Shouldn't 2 hours be the highest?

The highest post-meal 2 hour BG I've gotten was 187 - how bad is that? (This doesn't include the terrible Glucerna shake day.)

Why is my morning fasting number higher than it should be? What SHOULD it be? I know from the ADA blood sugar diary that a persons target blood sugar ranges are 80 to 120 before meals, but it doesn't say anything about where it should be when fasting overnight (or on 3 hours of sleep - whichever I get.) :( I could cry.

Now, the issue of test strips. I was prescribed 100 for the month. I told the nurse that I would need much more than that, so she sent the pharmacy an rx for 300 test strips, but wrote the instructions to test 3x daily. (Which … I dont understand - how am I supposed to figure out which foods do what to my BG with only 3 strips a day?) The pharmacy gave me 100 test strips because that's what she wrote … 3 a day at 30 days is 90, so I got 100. I immediately contacted the nurse who said she'd rewrite it and send in a new Rx - so she rewrote it for 5x a day, and then the pharmacy wouldn't fill it. So, it's been less than a week and I'm already at about 57 strips used. What do I do when I run out? Just not test? Buy them off of eBay? Try to come up with $188 to pay cash for them at Rite-Aid? (insert sobbing sound here.) :(

I consider myself to be a semi-intelligent person, so I hate that all of this has me confused. I don't have any friends because of my anxiety problems, so I only have my husband for support, which I'm grateful for, but I hate feeling so overwhelmed…and he's got enough stressors in his life with work and our family that I haven't been as open with him about how scared I am in order to save him some stress. I started having nightmares where I'd start crying - and would wake to my husband holding me and the sound of myself crying. What is going on with me??? :(

I'm terrified. What happens if I accidentally drink or eat something that has sugar in it? What will happen? I must have had diabetes for at least 18 to 24 months because I have some neuropathy in my feet, and I had about 7 episodes of very blurry vision. (How high do you think my BG got in order to have blurred vision like that?) I haven't had the blurred vision since my OB/Gyn first told me I was diabetic and I changed what I was eating. (Also, I am now eating several times a day instead of just once.) But, what damage did I do to my internal organs having gone undiagnosed for possibly 2 years - and why didn't my GP ask that, either? I'm supposed to go back to see him in 1 month…what is he hoping to find in one month?

One final thing. In January I got very sick. I lost about 45 pounds. I was basically just nauseous for an entire month and couldn't eat anything. I'd wake up every 4 hours with my heart pounding some nights. I was exhausted and slept as much as possible. I couldn't think straight or concentrate on things. About 2 weeks into this I went to Urgent Care and the doctor gave me Zofran for the nausea but that was all. Do you think that might have been related to untreated diabetes? (I only waited for so long to see a doctor because my sister had been sick for a week with nausea being her primary symptom - I just thought I had the same "flu" she had…only mine lasted for a month.)

Okay, well, I've rambled on so long and I do apologize so much for that - a terrible first impression, I know - but I really needed to get some of this stuff out. Thank you so much if you read this far!

Lisa


12 replies

Pat-O
Pat-O 2014-09-12 12:50:39 -0700 Report

U need to go see a diabetes educator. Then see a dietician - get all the literature you can & read n read up on diabetes. As you can't go on 1 carb per meal!!!! All foods have carbs, except meat, poultry & fish.. Carbs vary in foods. And it's not a diabetic "diet" just plain healthy eating!!!! Some foods affect you more than others, it's not same for everyone!!! Portion control is everything. You'll soon see what food rise your blood sugar levels and what's ok. American diabetes association has loads of info for you to read up on. Also a carb counting book might help a lot too

haoleboy
haoleboy 2014-09-12 12:08:27 -0700 Report

Dealing with a chronic illness/condition can be incredibly stressful. It seems, at times, that the mental aspect of dealing with a disease that you know is never going away is the hardest part.

Here is how I have been successfully coping …
Don't worry about the past. Knowing how you got it ain't gonna fix it.
Focus on what you can do at this moment to make yourself as healthy as possible.
You are not alone. Reach out to others for help.
Learn as much as you can about your disease/condition.
Be forgiving. Start first by forgiving yourself.
Be loving. Start first by loving yourself.
Be patient. Take baby steps.
Meditate daily.

"Do not dwell in the past …
Do not dream of the future…
Concentrate the mind on the present moment."

namaste
-Steve

Glucerna
Glucerna 2014-09-12 15:33:29 -0700 Report

Wise words for everyone, in any situation Steve. ~Lynn @Glucerna

haoleboy
haoleboy 2014-09-12 17:11:35 -0700 Report

I know I have shared that here several times but I have found that it works in just "coping" with life in general. And with few modifications is part of my basic philosophy.
We tend to focus on our past and worry about our future missing the true blessing of life … the journey itself.

Steve

Lakeland
Lakeland 2014-09-10 17:19:06 -0700 Report

My story is very similar, so see if I can help a little, my doctor did get me into a class & what we did is make a chart & (yes while this chart thing is going on you do go through test strips). I took my sugar & wrote the number on my chart, I wrote what I ate, waited 2 hours then re tested & put that number down ( I did not do the 30 minutes later like you're doing) I also wrote down , if I took a walk or exercised in any way I took my sugar & wrote that down. This was all for me to realize what foods did to my body & for me I noticed if I took a walk, I could drop my points 30 or more by a walk. once you get a sense for this you won't feel the need to test as often, but I do test 2 times a day or if I try a new food, I'll test & see what it did to my sugars.

as for eating, they suggested to me to choose the carb first. if I want bread, don't eat dessert or fruit. If you want fruit, don't eat the bread or dessert. If you do choose a bread try to make sure your fiber count on the nutrician label is above 4. this means your body will work harder to break down this carb & it won't spike your sugar so quick & you'll feel full longer.

by doing this I realized I have a big problem with fruit. If you're newly diagnosed it will take awhile to drop your sugars unless they gave you insulin. I was at 550 when I was first diagnosed and; I went blurry.

Please know that diabetes is very controllable, with testing you can know where you are at any time so I'm happy that I have diabetes over some other kinds of diseases.

breakfast was the easiest for me to change but I had to cook, eggs ok, light sausage links, are ok. I used sandwich thins for my toast that has higher fiber & 100 calories. This week I tried my old way , I got a high fiber cerial , milk, toast, juice, that is so bad for me, that's carb, carb, carb, & carb & my sugars went to 320. That's why if you plan your meal around 1 carb then everything else will be ok.

I hope this helps. by the way when I got my numbers under control my eyesight came back so it's nice to know that if you do this right you can feel normal again.

By the way, it's good to eat a snack between meals like, carrots or red beat eggs or goldfish crackers, they told me the goal is to keep sugars fairly level instead of low then high. if I wanted a candy bar, the gluecerna diabetic bars are good. by the way your numbers are also affected by other medicines & stresses so don't be so strict on your self some of this you'll say to your self, "but I didn't eat any sugar & I'm too high" it could be your stresses. I don't panic at all if I'm at 120 or 130, I will take a short walk if I'm higher than that

Best wishes
Diane

Type1Lou
Type1Lou 2014-09-09 16:59:20 -0700 Report

I have been told by several "professionals" that I do not eat enough carbohydrates and that I will lose brain cells. Hogwash! I have been following a low-carb diet since the early 2000's and my BG control has improved greatly as a result. (I was diagnosed Type 1 in 1976 at age 27.) Dr Richard Bernstein (himself a diabetic) wrote a book titled "Diabetes Solution" that advocates a drastic reduction/near elimination of carbohydrates for diabetics. Not all doctors are in agreement with him but it worked for him and it works well for his patients as well as for many others here on DC. By reducing your carbohydrate intake, your BG will improve and you will gain control. How many carbs??…that is something you need to figure out for yourself since we are all different and diabetes is not a "One size fits all" disease. But low-carb definitely does work. ( I limit myself to 120 grams of carb per day. I'm 5'3" tall and weigh 120 lbs. My last A1c was 6.6 which indicates good control.)

spiroll
spiroll 2014-09-09 23:17:56 -0700 Report

Thank you, Lou. I will look for that book! I've been doing so much research and low-carb really does seem to be the way to go, even though the diabetic associations I've signed up with online have continuously been sending me the opposite information. I have to question why they continue to push for so many carbohydrates when clearly that isn't working for so many people.

I've done low-carb diets before, so I am familiar with the lifestyle - and I've been eating low-carb since I was first told that I was diabetic. Although I can't get anyone on any discussion forum to respond to my questions about my numbers, I think - from my research - that they are getting better. There was a calculator somewhere online (I've lost the link now) that told me that based on my average daily BG readings that I'd have an A1C of 6.1 if I was tested that day. I almost can't wait until my next A1C to be done to reassure myself that it's working.

Thanks again for your reply! :)

Type1Lou
Type1Lou 2014-09-10 05:28:22 -0700 Report

Gary Scheiner's book "Think Like a Pancreas" has a chart with that A1c/BG information as well as much other useful data. Remember that A1c is an indication of what your control was over the past 2 or 3 months, although, with lower carb during the last month, it should be a bit lower than a month ago. Don't hesitate to ask any questions…you're on the track to better control!

jayabee52
jayabee52 2014-09-09 05:35:58 -0700 Report

Howdy Lisa
WELCOME to DC.

Please take a deep breath and relax, like Irish said. You are in a race, only the race is not a sprint, it is an ultra marathon and you need to pace yourself to make it to the finish line.

Also with your frantic energy you are calling on your adrenals to supply you with energy. Guess where that energy comes from? It comes from stored glycogen in the liver (the liver dump Irish mentioned). which raises one's BG (blood glucose) levels.

What Dr is looking for in your return in 1 month is how you have fared in your diabetes. Are you continuing to have elevated BG levels or are you returning more to normal? Dr will be assessing if you may need diabetes meducations. This is also the time to ask Dr any questions you may have. I like to use a word processor to write down my questions so I don't forget them. I'll print a copy for Dr and one for me so we are both on the same page. I then write down Dr's answer on my sheet so I can take it home and study it if need be.

And about questions: I believe the only "stupid" or "foolish" question is a HONEST question which is not asked! That goes for the Dr's office as well as here on DC.

Welcome to your "new normal". Sorry you qualify for this, but this is a really good place to find support and information, from folks who've had experience managing their diabetes.

That does not replace your Dr's advice but you can find some good friends and good suggestions to follow here. And not all suggestions will work for you, as we all have different reactions to the same or similar foods or proceedure or what not.

I pray you find your new normal and you stick with us for quite a while.

James

spiroll
spiroll 2014-09-09 23:32:15 -0700 Report

Hi James!

Thank you for your reply. I appreciate your taking the time to respond.

Unfortunately my anxiety is not something that I've learned to control, although I do take 3 different medications for it and go to a therapist. I've had it pretty bad for 23 years now. I'm resigned to the fact that adrenaline affects my BG in a negative way, but I don't know what to do about that just yet.

I am not continuing to have elevated BG levels. I am by no means in the "normal" range yet, but the numbers are getting lower and lower. The highest I ever tested at was after a Glucerna shake (which is supposed to be for diabetics, but it shot my blood sugar from 142 fasting up to 256 in 2 hours.) My next highest number was 207, about 8 days ago (next test after that darn Glucerna shake, but since then it's been better.

Today my numbers were (after 5 hours of sleep) 179 fasting and before breakfast, then 90 minutes later 184. Before lunch was 128. Before dinner 123, and 2 hours after dinner 151. I don't know if that's good - but it must be better.

I've created a spreadsheet and have been graphing these numbers. I hope to add more data to the spreadsheet such as a description of the meal - not that it would necessarily show up on the graph, but if I see a diversion from the pattern I can click on the graph and see what I ate at that point.

I question my doctor a lot after the research I've done, and I will be asking him a lot of questions at my next visit. If he is not in line with my beliefs or refusing to acknowledge that the science of diabetes treatment is ever-evolving and that there are new standards, then I will switch doctors. I am fortunate enough to live near a very good medical community in Seattle, although that would be less convenient than visiting my GP here in the suburbs.

Thanks again for your reply and warm welcome!

Irish1951
Irish1951 2014-09-08 15:56:16 -0700 Report

1st- take a deep breath and relax. You will be fine. This is something that has been coming on for some time and will take time for you to deal with.
The morning high you are having is not uncommon for many of us. Your body makes it's own glucose and the liver will put it out as a "jump start" as you wake up. It is often called a "liver dump." It can also happen if you haven't eaten and your body senses that it needs glucose. You can help to control this by eating a snack of protein before bed. Peanut butter on wheat crackers is a popular one. I also use a string cheese.
As for testing- you need to ask your Dr. about that. Testing after meals is at 11/2 hrs-2 hrs. This is the time your numbers should be dropping. I assume you are a Type2. The number of times you test is really up to your Dr.
As for diet that is again up to your Dr. Ask to be sent to a dietitian to help with that. Most insurances cover that.
Toprol is not the cause of your T2. The experts aren't sure but life style, weight, and genetics may all play a part. There are other things that may play a part-sleep apnea, shift work on rotating schedules, and others. Toprol is for blood pressure (I'm on it too).
One of the many things you will hear on this site is that this condition is a " marathon not a sprint". That is so true. It will take time but you can and will control this.
There are a lot of people here that will answer you the best they can. There is wealth of information available here. Just ask.
Welcome to our group and sorry you had to join. Know you are in good company.

spiroll
spiroll 2014-09-10 00:15:34 -0700 Report

Thank you for your response, it is much appreciated.

I have a lot of research to do in regards to the liver dump. I have taken your advice and added a small snack of just peanut butter in a small amount before bedtime but don't have enough data yet to come to a conclusion as to whether that is the right food choice.

I do realize that the number of times that I test is up to my doctor - but he never told me how often to test, and his assistant told the pharmacy 3 times a day, which goes against what the doctor told me to do, which was to test just before and after meals at 30, 90, and 120 minutes out. With every meal being composed of different foods, that's a lot of test strips! :) I will talk to him about the number of tests when I see him next.

I do have to disagree with you about the Toprol. Beta-blockers have been known to affect blood sugar negatively for decades. Toprol definitely does affect blood glucose numbers (not in a positive way) and in its own prescribing information cautions use in diabetic patients. Here is a link to a reliable study on Toprol specifically, and I am sure you can find a lot more out there on the web about it if you feel like researching it. http://tinyurl.com/toproldiabetes Maybe your BG #'s are being affected by it, as well? Certainly something to talk over with your doctor as I plan to do.

I thank you very much for the warm welcome, and appreciate the information you shared very much. It led to some very interesting information that has helped me a great deal.

All my best to you.

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