Depressed

Type 2
#1

I mailed in one of those home a1c kits from Relion last week and got my results tonight. Despite low carb diet and daily exercise, my a1c went from 5.7 in April to 6.1. My doc thinks I have MODY since we tried several meds with no reduction in BS. Since I was doing well, my doc said I didn’t need to see him for six months. Now this development.

Now before I drown myself in ice cream, has anyone else used these kits? Have they been reliable?

As an aside, I drowned my sorrow in some Chinese takeout. Not the smartest move but I haven’t had chow mein since my diagnosis in November 2013. I will start low carbing again with breakfast.

#2

I haven't used one of those kits, but I think all A1c tests are only so accurate. I've seen +/- 0.5% or so.

I think 6.1 is a great A1c and shows hard work paid off, and it's not *that* different from 5.7. My A1c has never been that low in well over 20 years, and I'd be dancing with happiness if I got a result like that!

#3

Hi Gail,
I used this test a couple of times. I just had an A1C done by my doctor and it was 5.9. I wanted to test the accuracy and did the relion a few days later and just got the results. It was exact at 5.9. Not sure of this was a coincidence or not.

#4

gail, i havent used the relion a1c kits, or any at home kits for that matter. i agree with jen, you are doing a great job, 6.1 is a great a1c. i bet the chinese takeout was delish-sometimes it has to be done, youre only human!

maybe you can get in to the doc a bit earlier and discuss your preoccupation with the numbers, maybe together adjust your treatment plan?

#5

Comparing A1C from two different labs, or between a regular lab and a home test, and finding them only different by 0.4, doesn't mean there's any actual difference. The lab-to-lab variation between A1C tests can be larger than this.

I'd put more weight on trends in your bg meter numbers. It's hard to say a change of 0.4 in A1C is a "trend". It'd be hard to say a 5% change in bg meter numbers was a trend either. But do record all the A1C and bg results for further analysis... if every few months the numbers are ticking up 0.4 and this builds over a year into a rise of 1.6, then you have a very convincing trend.

#6

I've not used the Relion, but I have looked into it. The Relion kit has been regularly tested against the calibration and accuracy standards of the NGSP and it has done very well. When properly performed, it has turned out to be much more accurate than the Bayer A1cNow.

First, we must always look on every test, an A1c or blood sugar as just a number. It isn't a measure of our self worth and it isn't a measure of how well we have done taking care of ourselves. It is just another piece of information to be used to inform our decisions. And just like weighing yourself on the scale you should never place too much faith in any single reading. The current NGSP accuracy standards for labs is +/-7%. An actual A1c of 6.1% might come back with a test result of 5.6-6.5%.

I would chalk this up to just another piece of information. I actually put more faith in my meter readings. That is what really gives me better information about how I am doing. I consider the A1c to be a simplification for doctors who struggle to understand a single number.

#7

For 20 years i have been trying to explain the ups and downs of a1c. I get one every 6 months and when I know it should be high it is low and when I know it should be low it is high. Same lab same circumstances, just no sense at all.

here is an example last summer in august I had one and I had a very nice blood sugar the entire 3 months prior it jumped from 6.2 to 6.7. This past winter I had one and this includes holidays etc, drops to 6.1 It makes no sense. Had they been reversed sure I could accept that, but not this way.

So what do I do? I don't get tied up on any result that is in the 6's. This past time I had my best ever at 5.7, ahh it is mirage. Maybe I did better or maybe just maybe this next time I will be 6.9 who knows. If we could slice a number that close I might be concerned or elated. I just know the truth however, it really is a mirage.

rick

#8

I think a 6.1 is good. I am glad you are starting over again with your diet tomorrow morning. Ice cream and Chinese gives me scary numbers. I don't blame you for being depressed, especially if you don't feel well. I hope that you get your numbers down and that you feel better soon. This site always inspires me to do better with everything especially with testing, records and diet. I find a simple diet is the best and that getting out and keeping busy help me to avoid the ice cream path. Good luck. Here is something to cheer you up.

#9

That is hardly an enormous rise and 6.1% is still a level many T2s would envy.

> My doc thinks I have MODY since we tried several meds with no reduction in BS. Since I was doing well, my doc said I didn't need to see him for six months. Now this development.

You have a strange doctor who expresses concern at possible mis-diagnosis and then displays a complete lack of urgency to clarify it. Has the doc suggested further testing for MODY?

I know you are low-carbing, but have you conducted post-meal peak spike testing to see if that could be improved for better blood glucose levels? Read this to see what I mean: Test, Review, Adjust

#10

I feel a bit better after everyone’s responses. My endo PA thinks MODY because 1. I weigh 106 lbs and have a bmi of 19. I have never been overweight in my life. My highest non pregnant weight was 115. 2. I do not respond to metformin. I took that for 6 months with no reduction in fasting bs or a1c. 3. Because of these last 2 points and the fact that I have a low insulin level but fasting bs greater than 115, he does not think I have insulin resistance. I have tried lantus which made my fasting bs worse, the more I increased the dose. 4. I have many thin relatives who are diabetic.

He does want me to do the genetic testing but none of it is covered by my insurance and would cost me thousands of dollars. Since no meds really work, he took me off everything and thinks I have MODY 2. If I get significantly worse, I probably have MODY 3.I would get the testing if I had $8000 just burning a hole I’m my bank account.

I do test after meals to figure out what I can eat, and I rarely have 2 hr pp greater that 140 which is why this a1c surprised me. I think I will repeat the Relion in 3 months to see if it is significantly more and call the office then.

My fasting bs is usually in the low 100s. No matter what I eat or what meds I take it hovers around this. The reason he isn’t concerned is my bs always comes back to this level and he says if I can control the post meal spikes, I will likely have no complications.

Correct me if this is wrong, but he did tell me that complications arise when a1c is consistently over 8.

#11

Why does he think you have MODY and not LADA? i had 23andme genetic testing for $99. it doesn't test for MODY and it is not an antibodies test for LADA, but it did show that i have one of the risk alleles for T2 on the TCFL2 gene that is thought to be involved in insulin production (I would be insulin deficient as well). From what I've read about LADA, since it is an autoimmune attack, oral meds and diet/exercise will not improve BG like they will for a T2. I've heard that when BG is consistently running 130, you get on insulin. Then, ala Bernstein, you use low carb and exercise to keep insulin requirements low, thus keeping big swings in blood sugar to a minimum. I'm not sure if I can prevent LADA or Type 2 or whatever, but low carb and exercise is keeping me from my former prediabetic A1c. Then in the future if I do need insulin, I already have the diet and exercise habits now to help me use it effectively/safely. PS 23andme was stopped from giving out health reports based on their genetic testing by the FDA. They can only give out ancestry info now. However, I believe they still do the full range of genetic testing, you just have to do your own research through snpedia.com. it's more complicated than that, but who's ever interested can go to snpedia.com and read up on it.

#12

I suspect your endo may be correct based on your description, although LADA is also a possibility. You may have already read this, but if not you might find Jenny Ruhl's page on MODY interesting: http://www.phlaunt.com/diabetes/14047009.php

Jenny is MODY herself.

For post-meal testing I found two hours was far too late. Do a little extra testing to find when you are peaking; that is likely to be closer to one hour than two. You may get some surprises.

#13

Another good resource for Monogenic diabetes (MODY) information is a site run by Exeter called DiabetesGenes.
Unfortunately MODY-3 is characterized by highs after meals and relatively normal fastings. MODY-2 is characterized by elevated fastings and relatively normal after meal blood sugars. From what you describe, MODY-2 is more likely. I find it strange that your PA would leap to a hypothesis diagnosis of MODY when even my endo doesn't have clarity about the typical symptoms.

That being said, we also need to keep in mind that T2 is not some single uniform condition. It is in fact a diagnosis of "diabetes of unknown cause." Most experts will readily admit that T2 comes in many forms. I never responded to medications. I saw no reduction in blood sugars or A1c with medication, only diet and exercise ever had an effect.

I think we all wish to know exactly what has gone wrong with our bodies. It is part of coming to terms with how we got into this situation with this very serious condition. But in the end, even if you never find out exactly what is going on, as long as you figure out how to live a long, healthy and happy life it doesn't matter.

#14

Have you checked your 1 hr pp blood glucose? I was surprised by my increase too because I was doing well keeping my 2 hour below 140, so I started checking at 1 hour too and realized with low fat meals I was still spiking at in the 180 to 250 range at 1 hr!

#15

Thanks for the website. I will check it out. When you say relatively normal after meals, what numbers are we talking? Because I can go high after meals depending on what I eat

#16

Depending on the meal, my spike can be at 1 hour or 4 hours.

#17

Many of us believe that complications arise with significant time spent over 140. That is equivalent to an A1C of 6.5.

#18

While you might be somewhat high after a meal, someone with MODY-2 won't typically go over 200 mg/dl. A MODY-2 may typically pass an OGTT.

#19

That is me. My dumb pcp thought I didn’t have diabetes because my ogtt was wnl. I’ve never gone over 200 but with a meal that includes as much white rice as I want, I can get close. I never eat it anymore but why does it have to taste so good. If I eat that, I get a reading of 160s