I totally see how many people here at Tu have found success with low carb and I've done it here and there but I like to splurge on carbs. It's sort of unfortunate that medical science can't figure out how many carbs we need, although it seems as if it's not really too many, but that we like them so much. It seems totally reasonable to prescribe "topical" insulin for folks who might need a whiff every now and then to eat cake or burritos or Quadrivium Ale or whatever but medical practice and thus many of us shy away from saying "you know what doc, I need to let 'er rip...hook me up..."
Here’s two cents from a newbie. One survey that I saw (sorry can’t remember where) of 26,000 T1s only 26% or so had an A1c of less than 7.0. I think because of this most docs don’t try to be aggressive enough in treatment programs because they figure the patient would rebel. If you like your endo on a personal level I’d just tell him/ her what your goals are and if they think they can get you there. If not find a new endo.
Chasing BG numbers can be filled with anxiety but remember that the evidence is that the more “normal” you are the fewer the complications you’ll have but there’s no proof at which number will eliminate complications. Besides, if the difference between keeping BG under 120 versus 160 is only a slight difference in complications but doing so causes all kinds of stress is it really worth it? My personal goals are nothing over 160 and an A1c of 5.5% with no hypos! Not there yet but it’s good to have goals.
Hi bjm,
You know my story- if I could go back in time and be diagnosed when I should have been, even though I don't like being on insulin, I would choose to go on low dose insulin and avoid everything that happened and keep myself stable. Once I got to the crisis that was really the end of any chance for a long true honeymoon where I might have been able to have the experience that sensorium has described. Keeping under 140 all the time and eating what I want to or even close to it is simply not possible for me even if I were to just about starve myself and take insulin it isn't possible and I feel having gone through dka and everything else made me more unstable. So my advice is to discuss all of this with this endo and if he won't help you find someone else who will. As you also know I saw NUMEROUS doctors for years, none of whom diagnosed me until the very end, literally 3 days before I ended up in the icu, it is really important to get to a good doctor who will help you treat this the best way possible. I would also look into any programs that you may be able to participate in for prevention. I hope this helps :-)
I'm not sure how you interpreted my posts, but I certainly wasn't attempting to tell the OP what to do. I was only offering a different perspective because I agree that we all have to make up our own minds with the information available. With that in mind, I'll share my personal experience, which is all I can really go by. I didn't need basal for over 18 months after diagnosis. I needed bolus because my BG would go well over 200 with any amount of carbs. My I:C ratio averaged between 1:20 and 1:25. I had a second phase insulin response, but it was very delayed, so it was very difficult to determine when and how much it would help me. I am extremely glad I was able to go on insulin because it made me feel so much better once my BG was out of the crazy range. However, I think I had been having BG issues for years before diagnosis and, had it been detected before my first phase insulin response was so impaired I think trying to use exogenous insulin would have been a nightmare for me. Again, for me. My experience only.
bjm - At my rheumatologist's guidance I contacted my insurance company and explained my situation. The representative is working to find an endo in my area that specializes in LADA so I can get the test run. Otherwise, I will have to go into the medical center which is a quite far from where I live. But if push comes to shove, and I can't find an endo in my area that will do the testing for me, I will bite the bullet and head to the medical center.
I know how you feel and the frustration. All the signs with the exception of LADA tatted to my forehead.
After reading everyone’s viewpoints, experiences and good advice I decided to only give this endo 6 months, which will take me to my next appointment with him in April. I’m hoping he wants to see my readings in 2 months so he can intervene if they get worse and have me come in earlier. He also will be checking my A1C again in January. I’m pretty sure it will be higher since the past few days I have been consistently over 140 at 2hr and I know I am likely peaking in the 170-220 range at 1hr. (although I haven’t tested then again). I can tell by how sluggish I feel at 1 hr. Right now I’m ok and haven’t seen 2 hrs at 200+ yet. If I do, I will be reporting them to him and I won’t wait until April. Unless I knew for sure of an Endo in Southeastern PA that treats LADA I really don’t have another option- especially since I already traveled to MD in July to find out that I was positive for antibodies. Thanks everyone for caring…I feel very supported!
You might consider hiring Gary Scheiner to help sort out your insulin regimen. He helped me get a good handle on my basal rates back in 2012. Gary is a certified diabetes educator, author of diabetes books, and a T1D. I think he's located in the Philadelphia area but he can consult using the phone and Skype. Insurance doesn't usually cover his fees but he's good at getting a solid basal/bolus treatment established.
I've visited a half dozen or so endocrinologists over the last 30 years. I know their heart is in the right place but they don't seem to have the time or the expertise to untangle the daily challenges that we face. They've been very content to see me for 15-45 minutes four times a year and never have been able or willing to follow through to solve the dosing problems I had.
I know there are exceptions to my personal experience with endos but I was never lucky enough to cross paths with them. I live in a major metro area and failed to secure meaningful help from even prestigious teaching university diabetes centers.
I received far more help reading books and participating on this forum than all the help I received from doctors over the years. They're great for providing scripts but they're amateurs, for the most part, when it comes to dosing insulin. A motivated patient willing to do the work, keep written records, and conduct reasonable experiments will do far better than depending on a doctor for advice, in my humble opinion. It took me 28 years with D to finally reach this conclusion. Sometimes I'm a slow learner, but my health is far better now that I've taken the diabetes control reins completely to myself.
Don't get me wrong. Doctors certainly have their place but dosing insulin is not their area of expertise.
Bjm… Hi!! Have you thought about contacting the endo that I go to if you decide to change? Pretty sure I gave you her name…
Hi there! I couldn’t find where you told me your endo’s name. You can send me a message if you like… I don’t think I got your reply for some reason to my message.
Thanks
Sounds like a good option but I’m not on insulin yet and not sure if I should be—given that I don’t spine consistently on certain foods or even a set number of carbs at times. Thanks though for the advise Terry
One thing that I noticed differently since eating higher carbs is that around the 45 minute to 1 hour post meal time, I have been literally falling asleep and feeling almost drugged until my alarm rings to take my blood sugar.
I still feel this way, like I'm on sleeping pills sometimes. It happens if my BG's spike really high, sometimes I'll literally just fall asleep, like I'm on a drug or something. I can get really tired too if my BG's have been running high and come back down and/or I'll get very weak and drugged feeling if I'm really low sometimes too. Blood sugars effect every nerve, cell, muscle, organ in our bodies.
Do you still feel tired even on insulin...assuming you are? I also thought this would go away when one has higher blood sugars over time.
I Just sent you another message in case you didn't get the first one :)
Are you taking oral meds for your diabetes? Before I started on insulin 6 months ago I was prescribed 4 different meds to control diabetes. I've been on a variety of meds for the last 8 years to control diabetes. When first diagnosed as a type 2, doctors started me out on Amyrial. Every other year more meds were added. After awhile my blood sugars control was becoming difficult to maintain no matter what I did. Also, I noticed that I feeling tired most of the time. My energy level bottomed out, could get out and ride my mt. bike like I've been doing. A1C went up from 6.5 to 8.5%. The week before I started on insulin, I felt like I was coming down with something, like a flu. I was weak, fatigued and had bad head aches. Everyone that knew me noticed my color was off. The doctor that was treating during this time thought I was faking it, and I wasn't being compliant with my diabetes. Found and Endo, he ran blood test that confirmed that I was a type 1. In turn, the meds I was on to control diabetes was doing more harm than good. Since being on the insulin, reduced my carb intake, lost weight, I am feeling much better. I've notice that my blood sugars are not swinging like a yo-yo when I starting on insulin. My levels have leveled off significantly. As of last night my 30 day average was 115.
Hope things work out for you.
Thanks Tim and no I'm not on any meds yet. I've been eating super healthy...no processed foods, whole grains, lots of veggies and fruit, only white meat and fish/seafood a few times a week. I exercise daily or at least 5 times a week, so we will see how things go. I'm glad you seem to have your blood sugar in control- the swings can be exhausting.
I have this problem too where if I spike I fall asleep really easily. I don't get it very often because I try to tight control to keep my blood sugar down and I try to correct if I go above 180 mg/dL. Insulin makes me energetic and happy where if I dose it correctly I don't have this problem at all. I had this problem really bad before I started insulin at all and was starving myself to maintain readings below 300 mg/dL , I was like constantly tired and felt like I was doped up. Since starting insulin it's a rare thing.
When you start a low carb diet it takes time for your body to adapt. You made a some major changes to your diet to reduce carbs last few weeks and that might explain your feeling of tiredness. This is a common thing and even has a name, the "Atkins Flu." The explanation is that a low carb diet causes your body to release significant amounts of sodium and water. The book "New Atkins for You" suggests increasing your salt intake by drinking bouillon several times a day.
After a couple of weeks most people find that their energy levels are restored and in fact you end up with even more energy, and in particular the sleepiness that you can have after a carby meal is gone.
Thanks Brian. I was on low carb from July until October and then ate a "normal" diet for 3 weeks to show this new endo how my numbers differed. When I explained that I was eating 25-35 grams per meal he told me NOT to count carbs anymore and just eat healthy-- similar to the Mediterranean Diet. After trying this diet this past week, funny thing is that I find the only thing different is that I eat more fruit now, because I pretty much ate that way to begin with. If I were to count my carbs now with the addition of fruit I would be 60 to 80 carbs per meal, which is likely why I am feeling sluggish.
I'm curious, bjm. Are your blood glucose numbers now, better, worse, or the same as your low-carb period?
When I was eating lower carb 25-35 per meal my post meal readings were usually 140 or less. My fasting was still above 100, but not more than 110. When I ate "normal", the three weeks before seeing the endo, they were almost always above 140 and my fasting readings were always between 110 and 125.
I've only been trying this Mediterranean diet for 1 week and it seems like I am somewhere in the middle...better than the "normal" diet, but worse then the lower carb.