I’m the one who is pushing making sure you get help right away. But also…complications are a long-term process. If you can get help and get your BG down you can stave them off. I am just concerned, now, about the effects of very high glucose on right now.
Diana, boy do I feel for you! I pretty much diagnosed myself in 2000, got a glucometer to confirm what I thought was going on, and went to a Dr with a week of BG readings over 350. She looked at the logbook, agreed I must be diabetic, did some blood work, and sent me home with prescriptions for Avandia and Glucophage and the admonition to “watch breads and sweets”. Umm, thanks a lot! It was only after spending hours reading on the internet that I found some direction. My point is that YOU are in charge of all this. Yes, you need a good doctor that will listen to you and take action and finding one should be a priority. In the meantime, test, test, test, and read, read, read. 
personally with BG like those I would either immediately go to urgent care/ER or find a new primary care doc that can get you in today.
sounds as if you have been diabetic for a bit and I would not play with those numbers–many peeps are hospitalized with numbers that high…surely don’t understand your doctor–I think i would be inclined to file a complaint with the state board as well…
You could totally be Type 1, which would explain why everytime you eat, your blood sugar goes up. Most people diagnosed over a certain age who didn’t present w/ DKA in the hospital are told they’re Type 2, b/c the docs don’t know any better (frightening). I was dx’d T2 w/ blood sugars that would not move out of the 300’s, no matter what. After a week of orals, I went back and told my doc to run the T1 marker tests. She also put me on Levemir at that point - the morning after I first took my first injection of Levemir, I was 119. By bed that night, I was 300-something. So I got another appt w/ my doc and voila - my test results came back positive for T1, she gave me Apidra, took me off orals and sent me to an endo. Common story for wrongly dx’d T1s.
Diana,
How long have you been taking Synthroid? Do your levels get checked frequently? Thyroid imbalances really mess with BG also.
Great advice about going to the ER & demanding help.
For the past couple of nights I’ve upped my Lantus 1 unit a night. Last night it was 13 units. My FBS was 157. Tonight I’ll go up one more.
I saw my doc today. She gave me a referral to an endo an hour away from me but said they wouldn’t really be able to do more for me than she is. A1c came back 13.1 C-Peptide is 2.2. Upon my insistence she wrote me a script for 1)glucophage and offered me the choice so that I could decided whether to take Amaryl or Humologue. I’ll have to think about it.
Side note-lost 10 pounds in past week and blood pressure was 115/74. Last appt BP was 159/110. Yah!! One note of happiness.
My doc told me today I had some symptoms of being both a Type 1 and a Type 2. I feel a little overloaded with info right now. I’ve been thinking about how I’ve eaten the way my grandparents and parents taught me too. Badly. That seems to be a lot of what’s out there as far as going out to eat too. Huge portions/lots of fat and carbs. All I want to do is eat, exercise, and go back to bed–hide for a while from my new life full of medication and food that’s good for me. I know I’m being a whiner. There’s so much worse stuff to have and people worse off. I think I just need some time.
Glucophage ok cannot really do harm and may do good if it works for you. I would go with the humalog insulin to cover meals. with amaryl a sulphonyl urea you will have no control and I do not think it is a good combo with Lantus.
Great on loosing 10 lb this is the best thing you can do. and as the BG goes down so does the blood pressure which at 115/74 is not bad.
I’m playing the devil’s advocate this is. OK? How long ago were you diagnosed and put on Lantus? It may be that the DR wanted to give you the benefit of a doubt and start slowly and lower on the insulin. After all, it is not uncommon that a DR would start you on oral meds and not insulin. This approach may be one of caution since the DR had no idea how you would respond.
I don’t know. I think I would wait a couple of weeks if it has only been recently. How are your numbers now? Are they coming down. Like advised by someone already, document everything. Food, BG readings, how you’re feeling.
I guess what I am trying to say is that I would wait til my next appointment (you have to anyway to get a referral) and see how things go. What you didn’t indicate is what kind of doc is the first one, the one who Dx’d you? Of course, you have every right to see an endo, but be slow in jumping the gun.
How’s that coming from a hothead???
Lois La Rose
Milwaukee, WI
Hey Diana,
Happy you got a referral. Man, that’s some arrogant doctor! Saying an endo wouldn’t be able to do more–ha! For one thing, you wouldn’t have to insist on meds from an endo with an A1c of 13.1. That’s an average BG of 329. When I was admitted to the ER DKA my BG was 809 & my A1c was 11.2.
Did she give you an eye exam? Another thing an endo would do. Not as good as going to an opthomologist, but still needed.
Wonderful C-peptide. Please make sure the endo does the GAD antibody test. Sure he/she will, but you never know. An endo should also do more extensive thyroid tests. Was it this doc who prescribed your Synthroid?
Awesome improvement on your BP–congrats.
Happy you’ve lost weight, but please know that high BG causes weight loss.
I’ve been taking Synthroid for about 5 years now. My initial test came back 60.5. Yep, I wrote that correctly. --60.5-- My doc told me he’d never seen anyone with that high of a number that was still vertical. Definitely scared me into taking my meds. I’ve been at a normal level for years now. I used to have the levels checked frequently by now only about once a year.
Thanks Ellie,
Last week I ate a 6-inch sub. I know–what was I thinking? All that bread. It shot my BG up to 420. Besides that it’s stayed much lower but never under 140. What do you think is a high enough BG to go to the ER? What if I can’t stand not having ice cream one more second and binge? I’m still scared.
She Rx’d me to take 500mg glucophage w/ breakfast & dinner. I’m worried about adding so much medicine at once so I’ve just been taking the dinner pill. --NOT the amaryl or humologue either. I also started taking 250mg Magnesium & 200mcg Chromium with lunch and a (you can laugh) Flinstone Complete in the afternoon. Unless I crack under the pressure and eat carbs my BG has stayed under 200 but is still no where near 100. Maybe I should add the morning glucophage? What could it hurt? Any thoughts?
Thanks Gerri,
I’m switching primary care docs. Let me tell you—stupid me I know but I lost the Rx my doc gave me for the glucophage. She didn’t call it in for a whole week! Can you possibly believe that?? That’s an extra month with high BG’s because this doc sucks at diabetes treatment and being a doc.
What does a GAD antibody test check?
No this doc didn’t prescribe the synthroid. That was my prior doc of 7 years (2001-Dec2008), in a city I’ve moved away from. The sad thing is that they never once checked my glucose. Now, you might question why I’d switch back to that office for treatment because I have an appointment there next week. I’m going to see a different doctor in the practice who’ll hopefully be the doc I need him to be.
I’ve never lost weight–had the same weight for many years. Maybe I’ve just kept overeating to compensate? lol. That’s a sad lol.
Re: Lantus=First week in February
Maybe the doc was being cautious…that’s definitely giving her benefit of the doubt. I haven’t read a-n-y-t-h-i-n-g about Lantus being approved for that purpose though, especially for someone with a BG of 459 2 weeks before being told it was that high. And jeesh, my eyes are about bleeding I’ve read so much stuff in the past couple weeks. I’ve wanted to give her my patience and trust but I’ve reached my limit–after her taking a week to call in my lost glucophage Rx.
My numbers are lower. Basically because I’m avoiding carbs like a mad person. I’ve never had a low-carb meal in my life so surely that has made a huge difference but I’m dying for carbs like an addict wants crack. Pathetic (wry grin).
The doc is a GP. Just saw an ad in a local paper which says she specializes in diabetes. What a crock.
:0 I’m a crazy hothead so I’m blown away by your restraint. Especially for me because in one ear I have my stepmom (Phd-work is focused in nutrition, 50+yrs with Type 1 & no complications) and in the other ear I have my mom (nurse focused in treating diabetes, 10+yr Type 2 & lots of complications). Both are furious about my doc’s treatment so far & are trying to guide my care. I’ve never listened to their advice to eat better and lose weight for the past 15 years but now I’m scared. When they tell me my new doc sucks it reinforces my fear of poor treatment too.
I don’t know what a cut-off number would be, but the 459 you mentioned in the initial post sure would be I’d think!!!
Hey Diana,
Let me tell you how much I want to smack your doctor, soon to be you ex-doc! Hey, we all lose stuff. Took her a whole week to call in your Rx–she’s useless!
Yes, do add the morning meds!
GAD antibody test will measure if you have antibodies attacking your pancreas–the autoimmune part. You’ve got such good C-peptide test results & hopefully your GAD will be good also. If it’s within normal range, it’s time to start working on what’s probably your insulin resistance. That’s why you’ve got to take the meds prescribed. Please don’t mess around with this. If the meds don’t bring your BG down, then it may be time to add insulin.
My endo said my BG was creeping up for 5 years without me knowing it. I can relate.
Helpful to have your thyroid level checked again. Without good thyroid function, it’s very hard to control BG. Maybe your Synthroid dose needs adjusting.
Would be good to ask to have your Vit D levels checked as well.
Oh, you said you lost 10 lbs.
Please let us know how your appt goes.
Has anyone had you test your urine for ketones? If your sugars are running that high and you have no ketones or only trace ketones, it’s possible that you’re doing what you need to do right now by beginning basal insulin and it may just take some time for your numbers to climb down into an acceptable range. If you are showing moderate to large ketones in your urine, however, then these high numbers are ER worthy and you need to get your butt to the hospital just in case. You can do the test at home very easily. Ketostix are available over the counter without a Rx for about $10 a box. You urinate on the stick and compare the color to the chart on the packaging.
There are two dangers of high blood sugars - the immediate that Ellie is concerned about and the long term that you’re panicked about. You are not going to develop complications over night, but the last 5-7 years of your blood sugars running high is something that is understandably concerning you. But remember, you’ve had good days when you didn’t know your sugar and you can have many good days between now and your doctor’s appointments where you try to live normally. It’s the NOW that some of us are freaking out about. If you are running high AND presenting ketones, you are at risk for a dangerous condition known as DKA (diabetic ketoacidosis) where these ketone bodies cause physical shutdown. That’s why I want you to test your ketones before you run to the ER. They advise most diabetics (at least Type 1s) to test when over 250 mg/dL.
STILL, get a more responsive and considerate doctor. You need an endocrinologist and a certified diabetes educator. And read everything you can here in our community. This is definitely a condition where you are the manager of your own meds and care. And remember that for most people who are newly diagnosed, coming down takes time. You can’t “not” eat, but you can (for the immediate present) make really good choices of lean protein and low carb until you’re on stable meds and have had some diabetes nutritional education.
Thanks for the suggestion and explanation, no one has tested me for ketones so I’ll buy some strips next time I’m at the store. What should I consider running high? Anything over 250?
and…thanks, really. Reading your post kind of made me take a deep breath and chill for a sec.
One of our members here - Jenny - has a website that is so helpful for newly diagnosed Type 2s called Blood Sugar 101. She explains target ranges in terms of what the ADA suggests and what’s really considered optimal.
In time, anything over 140 will be high for you. But at this point in your struggle, your basis for comparison is skewed by your body’s equilibrium. When I’m over 140, I feel nauseous, cranky, have to go to the bathroom. I rarely go over 250 anymore. But that’s me today since I’ve gained a reasonable facsimile of control. Most of my 19 years of diabetes has not been this way. I used to feel low at 100 (instead of in the 60s) with no high symptoms until I was in the 300s. Everyone is different, but the damage to our bodies over 140 is why you will ultimately strive for lower numbers and a tighter range.