You probably already know this, but Jenny Ruhl's book, "Blood Sugar 101", has a section on MODY (page 160). It includes descriptions of two tests you can do yourself to help diagnose MODY.
I thought that I read somewhere that Jenny, herself, has MODY, but I'm not certain.
I'm still in the process of getting diagnosed and probably don't have MODY, but I wanted to join to at least be able to pass this information on for future members who don't know it.
April, I don't know the difference between hs-crp and crp, but they are two different ests.
On the subject of food, I eat eggs, cheese, small amount plain greek yogurt, small amount low gly veggies like carrots, squash, lettuce, sometimes a protein bar, but I wonder about those. I was a vegetarian for 25 years, but felt forced to eat meat in the last month (that was REALLY hard, because I hate the thought of meat and am squeamish), but I found out when you start to feel desperate, you do things don't know you can. With the addition of some meat, I'm going to try adding small amount low gly carbs. However, I recently developed a stomach problem (gastritis, diagnosed by endoscopy) that is greatly exacerbated(burning pain, gnawing hunger pain) by even moderate spikes, so I am very reluctant to try much of anything. Unfortunately at the same time I was diagnosed with gastritis, they discovered biliary dyskinesia by HIDA scan. I can't help but wonder if having known BG issues for almost two years now has worked against me, but have no way to prove it. I'm definitely not in the best place right now, but I weigh every day and try not to lose ground. I am currently 113, and 5'6". I am working hard to stay positive; I've stopped cardio exercise for now until I can get a better grip on everything. Overall, I'm doing better this week than the last three weeks and have gained one pound. So that is good!!! All of these new recent health issues have caused me to renew my pursuit of answers to the BG spikes. Thanks April and Knightshade for the encouragement. My husband keeps telling me this will all be fine eventually and I'm believing him :).
Another P>S> April...I've talked to you previously and Looked up our previous posts; we both also have Hashimotos, how weird is that?
Thanks for pointing out the nuance. I have never had hs-crp tested. Interesting. But probably a moot point now for me.
I just saw my Endo today. She is happy, I believe and very, very helpful.
Just cannot tell you how lucky I feel to have such a well educated physician.
Because I am so responsive to insulin and still have first phase insulin response, when I eat a higher carb meal, sometimes I'll have to inject 3 times for one meal. .5 units up to 3 times or first .5 then a full unit. If I go whole hog with a full unit, I'll just go hypo.
But if without insulin, I spike.
She wrote me a script for more needles. No problem.
And for more strips (the max that my insurance will allow). No problem. She told me she completely understood that with giving myself 3 shots for a single meal that I'd need to test a bunch of times if I misjudged.
It is an incredible relief to a)have a firm diagnosis and b) have a physician who gets it. I wish I could clone her for all of you.
However, I do have high hopes that the Kovler Center will offer some answers for you and that with that information and perhaps the articles that have been uploaded to this site which you can take to your physician, you will begin to be believed.
And, I was really half joking about eating a bunch of carbs and going in to see your Endo next time -- imagine my surprise when Knightshade piped up about his pizza episode and being tested at 137 at his appointment the next day.
Hilarious. Seriously, I think you should try it.
It is one of the things my doc "ordered" me to do in order to measure my C-peptide levels to look at them vs my BG level to see whether they were about what was expected meaning insulin production was on track, higher than expected, meaning I was over-producing because my cells were insulin resistant and couldn't utilize the insulin or, in my case. . . the was underproduction given how high my BG was. . . showing insulin deficiency and lack of insulin resistance (according to her).
So. . . you may really want to consider it.
The other things I'll share with you are:
1) I become symptomatic when my BG rises rapidly or goes much over 165. I develop a headache with a quick rise of 25+ points and then also get tingling in my fingers. Over 165 I begin to get nauseated. In the mid 200's I will wake up out of a sound sleep feeling horrible - headache, nausea and almost flu-like body aches. When my Endo asked for the forced c-peptide test, I'd been really limiting my carbs and keeping my glucose in check - so the carb overload did me in. It took me a good 36 hours to recover completely. I felt horrible. I got it up to about 225 for the test and it was hours before it came down. I had to go to bed.
2) Diabetes is, of course, a metabolic/digestive disease - so I would not at all rule out the possibility that your biliary diskinesia is related. Diskinesia also sounds as though it is neurological (as in neuropathy) and of course, high BG causes all kinds of neuropathies...not just the peripheral neuropathies we hear about all the time (fingers, feet). Gastroparesis (slow emptying of the stomach) causes all kinds of issues for diabetics and it is a form of neuropathy - of the gastric nerve.
By the way, don't know if you have a complete bias against all artificial sweeteners, but if you like vanilla yogurt, plain greek yogurt can be transformed with the use of the sugar free vanilla syrups that are used for coffee drinks. My Kroger store carries the Torani brand - I think about $4 for 13 oz which makes a lot of little yogurts at about 1 TBL per. Very, very yummy and made the yogurt so much better. I used to eat a ton of fruit flavored yogurts and vanilla and missed it but at 20 carbs a pop could no long do it.
Zero carbs for the syrup! Very doable, good protein and I went for the full fat baby natural yogurts (small portions) - but now have switched to an activia for the active cultures. I think it is low fat.
Take Care. Hang in there. Glad you have a support system in your hubby!
Good news on your endo visit April. You are lucky to have a good doctor. They are hard to come by and endos these days are overwhelmed by the sheer number of people with diabetes. I already have some type of peripheral neuropathy, but we don't know where it is coming from. Of course, both endos I've gone to say once again, not diabetic related. When I let myself have a spike over 150, I experience very low blood pressure (I have neurocardiogenic syncope), increased neuropathy and the stomach problem. I don't mind the first two, the stomach thing lasts for three or more days, so I am VERY reluctant to do one. However, if I had a doctor who would listen, I would definitely do a spike! Thanks for the ideas on the vanilla flavoring. I seem to be unable to eat any fruit at all...and I too really miss fruit!
Well, first of all - about that peripheral neuropathy, of course my answer is B**ls**t!!!!!!!!!!!!!
When I went in on the day my high fasting glucose was discovered (and it was all of a whopping 105 remember - but my PP spikes were in the 230's with the diet I was eating daily), my Internist first sat me down and said. . . so, how are you feeling, are you having any new symptoms?
I said, overall, I'm feeling better (I'd had terrible hypothyroidism which was hard to fix. . . another story because I believe the failure to pick up on my failure to respond to the mainline therapy for that stressed my body so significantly, it was probably what triggered my - until then - unexpressed MODY3 gene).
Except - I said - I have this weird tingling in my fingers that comes and goes and also very painful pins and needles in my heels and the balls of my feet -also intermittent - and that will last maybe 5-7 minutes. I can't walk it off. It is usually in one foot at a time - occasionally both and man does it hurt! Just like my foot has been asleep and is waking up and is at that really painful pins and needles stage?
She wrote it down and said "Hmmm?"
NEVER related it to the high glucose.
Denied I had or could have diabetes for 6 weeks - even in the face of spikes into the 230-240 range.
"You just have Prediabetes. . .Impaired Glucose Tolerance. Your A1C is only 5.4."
"We could try Metformin, but really, you probably don't want to try it. It has really bad gastrointestinal side effects, so if you can control this with diet and exercise I would really try that first."
What's the rush. No big deal. Even with my family history, my symptoms, my reports of spikes. Etc, etc.
Then, after I saw the Endo who dx'd me, this great MD was still skeptical that I had either hypothyroidism (she felt that my TSH was too low - maybe I was imagining all of this. . . like barely being able to get out of bed or walk up a flight of stairs) or diabetes.
After my 2nd Endo visit after the the diabetes Dx she asked "So, are you still diabetic?"
OMG!!!!!!!!!!!!! Can you imagine?????
Fortunately, she is no longer with that internal medicine practice.
I love my new doc. And she loves me. She calls me a smart patient.
She likes smart patients.
The other doc didn't.
I think I was smarter than she was.
She didn't like that so much.
Heaven help us.