I am in the same boat as a lot of members in this group.
Here is my story.
About a month and a half ago I started to get weird symptoms. Always thirsty, dry mouth, always peeing, always tired even if I got a good sleep. Type 2 runs in my fam and I there are type 1s on my dads side. Anyway I was in nursing so I know the symptoms of diabetes. So off I went to walmart bought a meter and started checking my own BG's. Well lo and behold I was getting high BG's after meals.Anywhere between 8-10.9 mmol (144-196 mgdl). I mentioned this to my doctor and she said that was NORMAL. Now from what I've read on countless websites and books that your BG 2 hours post meals should be back under 7 mmol (126 mgdl). I could eat a bit of oatmeal and I'm high afterward...anyway.
My a1c is good 5.8 but I've heard that can sometimes be skewed if you are deficient in certain vitamins like b12 (I'm on b12 shots). I got into trialnet and they are testing for antibodies so thats good but almost NO doctor here that I've seen (GP's) care about the high BG readings except the trialnet endo. She said she would talk to the head endo at the hospital about me before the results came back so she could prob meet with me either way if it was positive or negative results. I mentioned c-peptide to one of the drs I saw and it was like I was speaking chinese to them. I'm in Canada so I know that not a lot of our doctors here are knowledgeable or wanting to learn more but jeese louise.
I know LADA isn't known much to doctors but NO one I've mentioned it to knows about it so I just started to say type 1 instead. I'm crossing my fingers that the antibodies come back positive so I get referred to the endo at the hospital and can start bolus insulin because I don't like not hardly eating to be able to control my BG. I get cutting down on carbs but I shouldn't have to barely eat when I'm starving to control my BG.
Most of my fasting BG's aren't too bad. I DID however have a fasting BG of 9.3 on my last bloodwork and the doctor was like oh you're prob a lil insulin impaired but again wasn't concerned because "I'm too young to be diaetic".
Can't wait until the antibodies testing comes back...I hate waiting lol
Too young to be diabetic . . . as we here are fully aware, there IS no such thing as "too young". You have definitely run the gamut of some very -- how shall one say it -- "uninformed" doctors. It's probably no consolation, but that's nothing unusual. We have plenty of those here, too. As does every place. Sad but true.
What matters is that you are in charge and determined to demand what your health requires. Keep fighting the good fight until you get what you need.
Hi Alicia: That is really excellent that you were able to get into TrialNet, because it is an avenue to get better and more appropriate treatment. And yes, for adults it is usually very hard to get a correct diagnosis and appropriate treatment. Many doctors are not aware of LADA, and really LADA is just Type 1 autoimmune diabetes, so it is best to just say "Type 1 diabetes" and keep it simple. Let us know about your test results and progress. And good for you for being your own best advocate.
I can’t see an endo without a referral. I’m hoping toget referred from trialnet! Still waiting to hear back that’s all! It’s been a long wait since last Monday -_- for the results
It's so infuriating that doctors aren't aware of LADA/adult-onset type 1/whatever you want to call it. I had tell-tale symptoms for years and complained many times to various docs (including two endocrinologists!!), and they all told me to get more sleep and stop stressing. They wrote me off as a hypochondriac. I kind of wish they had been right, but at least now I have a diagnosis and am feeling better, and that's what's important.
I hope you can get yourself to a doctor who's less complacent about high blood sugars so that you can get the care you need. I know how frustrating it is to be unable to stay awake after eating and to feel lethargic and weak all the time -- that's no way to live!
Your story is strikingly similar to my experience a few months ago. I noticed a high BG on my sister's meter (170 mg/dL) but when I spoke with my GP my A1C (5.7) and fasting BG were normal. Oddly, I don't think I've ever had diabetes symptoms. Trailnet is amazing!! They did find antibodies (3+/5) and so did a follow-up OGTT. I failed the OGTT just barely, then failed a second OGTT to confirm a type 1 diagnosis. They referred me to an endo and I think I'm getting excellent care.
I am still low carbing, but I also take a little long acting insulin. I'm trying to keep my BG near normal levels to keep my honeymoon going. I feel lucky to have an early diagnosis and early insulin therapy (even though I'm anxious about what is next). I hope you get the help you need!
Perfect! I’m not alone! Woohoo at least I know that trialnet is handy. The lady from trialnet is the only one who doesn’t think I’m nuts about the high bg’s I’ve been getting. My GP said it was normal lol glad I’m not the only one …I do have symptoms tho…crazy you didn’t have any tho!
Yes. I would think that even if they weren't knowledgeable about LADA they would have enough sense to at least know such high bs readings are NOT normal and then refer to endocrinology. Craziness!!!
So trial net results came back negative for antibodies..so now I'm even more frustrated! The lady asked if I was still having symptoms so I said yes but that was late friday so she prob won't reply til sometime next week...ahhh so frustrating!
Hi Alicia: Which were the antibodies that were tested? Did you get the full suite (GADA, IAA, IA-2A, and Znt8)? I wrote a blog on autoantibody testing that you may find useful.
Not sure it was though trial net and I believe there are 5 tested by them. She just said negative. No c peptide was done and no dr I know think its needed at this point. I’m still supposed to see the internist in June but I can’t make the appt…bg today 3 hr pp Was 11.5/208
Wow, Alica. I feel for you. It is normal for General Practitioners to have little to no knowledge about diabetes. In my experience, the staff in Emergency Departments not only don't have much knowledge about diabetes, they frequently have wrong knowledge about diabetes; and, nearly always think diabetes is identical for everyone who has it.
Regardless of your test results, your post-meal glucose levels are dangerously high, and must be treated. That level of glucose is toxic and damages your body quite seriously, even though the effects are not immediately noticeable. Failing to control glucose levels leads to many undesirable complications. There are 2 actions you absolutely must do:
Read the book, cover to cover at least twice, and make sure you fully understand everything in it.
Get some fast-acting insulin and start using it before meals, with cautiously conservative bolus doses calculated using information from the book linked above. Humalog and NovoLog are fast-acting insulins. Humalog is a good choice for coping with post-meal glucose levels. There are many places in the USA where insulin can be purchased without a prescription (in case you have difficulty getting insulin on your own in Canada).
One can greatly simplify finding one's insulin to carb ratio by always consuming the same amount and type of carbohydrate when testing for a new insulin to carb ratio. An easy way to do this is drink a can of Coke for the test, as each can will always contain the same amount of carbs. Alternately, one could use dextrose tablets, so long as the same number of tablets are used every time.
I have been using insulin successfully for 5 years, thanks to the invaluable information in "Using Insulin: Everything You Need for Success with Insulin".
It is important to remember that insulin, when used properly, is a life saver; yet, when insulin is improperly or carelessly used, it can kill.
Disclaimer: I am not a doctor. This information is provided for educational use only. Anyone who implements the information contained in this post assumes all liability, and agrees to hold me harmless and free of any and all liability. Use the information in this post at solely your own risk.
Thanks for the reply Michael. I will look into that book. I probably can get it cheap through my friend since she works at chapters/Indigo. I was actually looking into getting apidra since it's also fast acting and is gone in like 3 hours after injecting. We don't need an Rx for insulin in canada you can just ask for it at any pharmacy. I got more bloodwork done this morning so I'm hoping I can finally be referred to an endo. Thanks for the advice :)
Before starting on Apidra, you should be aware it can not be mixed with any other insulin except NPH. This is an important drawback that excludes use of important options. Advanced users of insulin use a technique where a fast acting insulin (such as Humalog) is used to cover simple carbohydrates (such as sugar), and combined with a longer acting insulin (like Regular) to cover complex carbohydrates and protein. This technique enables eating simple carbohydrates safely (even in large amounts) without having hypoglycemia or hyperglycemia.
If you do start using insulin, you might want to know that insulin can be injected painlessly without using needles. Using insulin needles was an awful experience for me. It was always very painful, and left a 8 centimeter purple and yellow bruise that hurt for 2 weeks. Thankfully, I found a better, more civilized alternative. If you browse through the website in the link above, you may come across the message "As of February 9, 2009, Antares Pharma, Inc. has stopped selling the Medi-Jector VISION® device to NEW customers." This limitation applies only to USA customers.
