Questions Regarding Diagnosis

Type 1 and LADA New to Type 1 Diabetes
#1

I posted in the LADA Group but it was suggested I post in the forum also.

I just got the results back from testing for LADA. My insulin and C-peptides were both low but my antibodies (GAD65, Islet IA-2 and Insulin antibody all came back zero. I have been monitoring my blood glucose and it spikes after meals. My doctor is saying I don't have LADA because I don't have antibodies. She is calling it pancreatic insufficiency. When I googled pancreatic insufficiency it talked more about a decrease in pancreatic enzymes but did say it could result in diabetes. So could I have LADA if I don't have antibodies? I have Hashimoto's disease (and hypothyroid) could this be mimicking diabetes? I read that antibody levels can go to zero when a person has had Type 1 diabetes for a long time. I am still able to bring my BG back to normal so I don’t see how I could even have had LADA for a long time. I feel it’s important to get the diagnosis right so the treatment will be correct.

I noticed that after chewing licorice gum (real licorice not anise flavor) my BG was lower than my normal (but still in the normal range not hypo). I googled licorice root and found it has BG suppressing properties so I did an experiment and took a licorice root supplement and then ate some yogurt with cherries. My BG only went up to 122. Does anyone know how licorice root works? Does it stimulate the pancreas to produce more insulin? Will it cause more rapid burn out of my beta cells? My doctor, a naturopath, has me taking it with meals now (low carb diet). I will continue to monitor BG. My goal is nothing over 120. I have a follow-up appt in 4 weeks. But I am wondering if the licorice root is like the Type 2 drugs that work for a while but will destroy all my beta cells as in LADA/Type 1's. This is where I think the correct diagnosis is important.

Thanks for any insights!

#2

I've never been totally happy with my diagnosis. I am diagnosed with T2. My insulin production appears to be low. I "choose" to use insulin to tightly control my blood sugar. After all I believe I read, I firmly believe that keeping my blood sugar tightly controlled will not only reduce my chances of complications, but it will also preserve my remaining insulin production. I certainly believe that higher blood sugars can burn out your remaining beta cells, but I don't think licorice or other supplements can "save" your beta cells.

#3

For correct diagnosis, I'd recommend seeing an endo.

Have you researched MODY ? I found this link on MODY interesting.
http://www.phlaunt.com/diabetes/14047009.php

Sorry I can't help with personal experience, I have 'classic' T1D, diagnosed at age 5.

#4

Generally speaking, low c-peptide means T1-related diabetes, high c-peptide means insulin resistance related diabetes. "Pancreatic insufficiency" just sounds like a fancy way of saying you don't have antibodies, but if it progresses you'll still need to end up on insulin. Also, I've heard that when the antibody levels are really low but still present (say, in the beginning of LADA), they don't show up on the tests.

I'd second the recommendation to see an endocrinologist.

#5

I've read the c-peptide test is sensitive to whether it is done as fasting or not, and BG level at the same time. If you have a normal fasting BG, and c-peptide is on the low normal side, that would be different than with a high fasting BG, or if unknown BG or fasting.

#6

I saw an endo. He didn't think I even needed to be tested. He said he would order the test but he couldn't give me a diagnosis (to get insurance to pay for the test) until my BG was over 200. I told him I didn't plan to let it get that high. I almost walked out after the first 5 minutes. He said he treats it the same as Type 2 and that if the person doesn't respond to the medication that then they figure out they have LADA. I live in a rural community and drove 2 hours to see the only endo covered by my insurance. I asked for a prescription for test strips and he said he would write one out to test once a day and again wouldn't approve it for insurance coverage. I told him testing once a day wouldn't tell me anything and he agreed. My Naturopath has been great about running all kinds of tests (and she lists enough diagnosis codes that I don't ahve a problem with my insurance paying) but the state I live in doesn't give Naturopaths the right to prescribe drugs.

#7

Grrrr. It really frosts me when the medical world puts their silly rules ahead of what's best for a patient. I was in a wheelchair supposedly because of T2 diabetes, but wasn't allowed to see an endo because my A1C was too low (5.2). I wish you success, I haven't figured out yet how to do it.

#8

What was your a1c? If its in a healthy range and your fasting bg levels aren’t high with no meds I’d breathe a sigh of relief and keep trying to maintain a healthy diet and active lifestyle. If either of those indicators starts getting to unhealthy levels that’s when it’s time for immediate concern

#9

I think many of us can relate to the frustration of not having a crystal clear diagnosis though. Many of us, myself included, don’t really seem to fit the exact criteria for any specific type exactly.,. Which can be frustrating. But in the end whatever diagnosis they give you an whether or not they attach any acronyms to it really makes little difference-- the important thing is keeping the levels in control, and the two best indicators of that are fasting levels and a1c

#10

What about post prandials?

#11

If high levels are significant and frequent enough to show up in an elevated a1c then closer scrutiny on them is warranted I think— but everyone’s glucose levels go up after eating— so in my thinking looking at the big picture of a1c is more important— to the extent that if you don’t have a high a1c… And you aren’t on any medications that are keeping it lowered, then you don’t have diabetes

#12

If the BG levels are high enough to impact your life but not high for enough time to higher A1c, then the A1c may not be a good indicator.

Before I started Metformin, my highest A1c was 5.4. But I'd been seeing BGs as high as 180 on a regular basis, sometimes several times per day. My doctor hesitated before he gave me the Met, saying my BGs were okay, but once he heard that I was sleeping ten hours a night and dealing with migraines as a result of the wild fluctuations, he knew he had to do something.

If the BGs are bothering you, something needs to be done, no matter what the other tests show. Treatment is important.

#13

I first became concerned when my A1C was 5.9. I have gotten it down to 5.6 with diet. The lab report lists an estiamted average glucose level. Even with an A1C of 5.6 the estimated glucose level was over 100. This was also a concern. In past years my glucose level was in the high 70's so a definite increase for me. Also if my average was 111 that tells me that 50% of the time I was over 111. So I got a glucose meter and started testing my blood sugar levels throughout the day. My phase 2 insulin response is normal but my post meal glucose levels spike. I think my highest was 183 and I eat pretty healthy. I charted may values and I was over 100 50% of the day. I read that a non-diabetic that eats a HIGH carb diet will have a BG no more than 125 post meal. I agree with you, guitarnut, an elevated post meal BG should be a concern. I feel it is important to know the type of diabetes becasue the proper treament is dependent upon the type. So, my research continues. I came across a post by a 16 year old girl! that contained a link to the best information I have read on MODY:
http://www.athenadiagnostics.com/content/diagnostic-ed/endocrinology/mody
This may be the answer to many people who don't fint the Type 1 or Type 2 or even LADA scenarios.

#14

That is aweful. A phamacist told me to call a company that sells glucose meters to see if they would give me a complimentary meter which they did and 10 free test strips. It was enough to show that my post meal glucose levels were spiking. I then brought that to the endo along with all my other reasons for believing I was diabetic (family history, etc.). He was reluctant but said he would write me a prescription for test stripes enough to test my blood sugar once a day. I told him that wouldn't tell me anything and he agreed but that was all he was willing to do so I figured even if I used a one month supply in weeek it would still give me more information. I am working with a naturopth that is great. She isn't covered by insurance but when she orders tests I take the doctors orders to my primary care clinic so the testing has been covered my insurance. All I can suggest is to do as much as you can to educate yourself. If you can test your BG and show that you are abnormally high part of the time that would be good info too. You can present your case to a docotr. My experience is they don't like patients telling them anyting but it's your health, you have to be your own best advocate. I would keep going to doctors until you find one that will listen even if they aren't an expert in diabetes if they are willing to learn, it may be the best option. I wish you the best.

#15

Exactly! I went from settling to the high 70's and low 80's within two hours of eating to settling in the 120's and 130's (and higher). I rarely see numbers under 90 anymore unless it's a fasting number and that scares me, because things are definitely getting worse.

It's funny, because though I'm not anemic, my A1c seems artificially low for the numbers I see.

#16

If you feel your A1C is artifically low it probably is. Dr. Bernstein explains this in his book Diabetes Solution. It has something to do with the A1C averaging your daily glucose levels so if a person is still able to get their BG into the normal range it offsets the highs. He came up with his own formula for figuring average glucose based on A1C. He says an A1C of 5% = a BG of 100mg/dL. Then for every 1% above 5 add 40mg/dL. This works for BG's between 50 and 200 above that maybe not so accurate.