Hi Deb,

Not sure this is the right topic forum to be in however it may help someone to know they are not alone. I will do all I can to answer your questions.

I am going to go way back so bear with me.....I developed Infectious Hepatitis when I was 12, very sick, no one else got it but me. About a year after that I started having joint pains and this continued on until the diagnoses of Lupus when I was 31. Many many tests were run and no one could figure out what was wrong with me. Always very thin, had many OGTT's done and they always come up hypoglycemic which back then was laughed at and was told to eat more and more often.

When I was finely dignosed with Lupus I was put on massive doses of cortisone. I was very sick at the time and was only given 5 years to live. As you can see, here I am. My hubby actually saved my life by getting me to a different hospital and team of doctors. I was taken off of everything and a horrible kidney infection that was being covered up by the cortisone was finely able to rear its ugly head and boy did it ever! Very high fever and I was very sick for days.

Fast forward on to the middle 80's. I would have periods of low sugar along with readings that I knew were to high but at that time unless you were running over 200 no one was concerned about it. Had just started testing with the new glucometer so that is how I knew what my readings were.

My doctor started doing A1c's when they first came out and that I think was some time in the 90's. They would vary from 5.3 to 5.9 and I was always told I was within a normal range so not to worry and I was fine. I started noticing that I was always very sleepy in the afternoon and could barely drag around. One particular Thanksgiving in the late 90's early 2000, I felt so miserable from the sleepy fatigue feeling that my daughter said mom, you need to have your sugar checked. She is a registared dietition so she knew about diabetes. At that time I was not checking my sugar as the doctor had me convinced there was nothing wrong with me. Doctor said there was still nothing wrong with me.

In 2006 late in the Fall I went for a regular checkup and I tested 5.9 on the A1c. I KNEW it wouldn't be long but mind you I was doing my part and had been doing my part with careful carbs and exercise.

I went back in Jan 2007 for my 3 month checkup and I tested 6.3. I was finely put on Metformin ER, 500mg. For a few months like everyone else there were ups and downs however very little fasting above 100. My post meal numbers kept climbing and I asked for an increase in the Met and was put on 1000mg. Nothing changed. Feeling very fatigued and crappy most of the time. Everything was an effort.

In early 2008 I requested that my doctor have a complete pancreatic panel and C-Peptide done on me. She agreed. This could not be run at our hospital and had to be sent away. Took almost 2 weeks to come back. The pancreatic panel came back negative however the C-Peptide came back at a low normal, meaning that I was not producing enough insulin to accomadate my body.

It wasn't until 6 months later that I requested insulin after doing a lot of reading and research on it and me. From the massive doses of cortisone years ago it could be the reason that I am low on my own insulin. From the Lupus itself and I am also hypothyroid, it could be autoimmune and possibly I am a type 1.5 or LADA.

It really doesn't matter what type I am, I just know that insulin has helped me. Most of the time I have energy and finely feel like doing something.

I am very fortunate to have a doctor that listens to me and usually lets me call the shots. She knows I do all I can to take care of myself. I have also had numerous small strokes that have never been pinned down as to why they happened but they do show on the CAT Scans that have been done. No big ones thank God and only minor damage. Feel it is the small blood vessels, all arteries are clean.

One thing I have learned, we have to advocate for ourselves and if we don't no one is going to do it for us. Educate yourself as much as you can and don't let diabetes rule your life but let it fit in.

Most of the time now my sugar in under control. I still occasionally get a 223 then down to 54. Some times there seems to be a reason and other times there isn't. I just recently come off my supper time Met as my fastings have been way too low. 62 day before yesterday and 75 today. If they continue that low I will stop the Met altogether. Everything is trial and error and one day at a time.

If you have more questions feel free to ask. I have one for you, has your heart been checked out? Take care,

Ginny

Hi Ginny great history to follow. I am sure that you are not the only one that has gone through this. In fact your posting can help many, I think what burns me the most is when a person knows things arent right and there told hey all things are good. Thanks for your posting I know my wife has hyporeactive episodes and is not a diabetic, doesnt happen often but without a meter we would have never known.

Hi Ginny,

No problem in starting another post. I wondered if we had kind of hi-jacked Stormy's post, so probably better to do it this way. I wasn't sure how to go about it, so I'm glad you did it.

Wow! Thanks for sharing your story. I'm sorry to hear you also have lupus. I hope that is well-controlled and you're doing ok with it? I don't know too much about it. By sharing your story, others can learn from it, and that's the reason behind these message boards.

So it's been quite a few years with the ups and downs with your blood sugars. You didn't specify what your levels were when you decided to go on Metformin and when & levels then, too, when you went on insulin?

You said that you still experience some highs, then some unexplained lows like in the 50's. I bet those aren't very fun. YOu also said you may drop the metformin because of the lows? Metformin isn't supposed to cause low's......don't quote me, and by all means, go by your doctor's advice, but I would think you would lower your insulin doses before you drop the Metformin? How much insulin are you on?

You've been through a lot, even starting at 12 years of age with the hepatis! Goodness! The cortasone may have attacked your pancreas, unfortunatly. I've read a lot of stories of people on it for things like asthma, then becoming diabetic years later. All autoimmune diseases, huh? The thyroid, lupus, and then maybe type 1 or 1.5 diabetes.

Thank God you're still around! After they said you may live for 5 years! Here you are still going fairly strong, right? You are an inspiration for others! How do you keep going?

You are right about being advocates for ourselves. If you know something isn't quite right, keep complaining until they prove you wrong (or right, if necessary!). A lot of us are pretty fine-tuned to our bodies and how they work, so we know when something is amiss.

You asked if I had my heart checked? They've done a what do you call it? Echo cardiogram and found nothing. Either before that, or after that, when I mentioned the heart beating faster, or skipping beats, I wore a heart monitor for 24 hours. When I showed up to drop it off so they can get the results, the person who hooked it up wasn't there, and I supposedly erased it all when I removed it myself. So I had to do it all over again. The second time, there weren't may instances when my heart did anything, and they said they didn't find anything wrong. So hopefully, all is fine with that. I do have high blood pressure (controlled with meds).

I hope you can read this....I see it is kind of wrapped to the left, with a character or two or more missing. I will do a preview before sending. I also see the boxes down below where I can check to get notified when I get a response to my post. That's good. I never got an email saying when Stormy wrote and I asked her about it. Not sure why I didn't notice that part at the bottom?

Anyway, thanks for writing again. You take care and write again, ok?

---Deb.

Hi Deb,

Yes, I am doing fine with the Lupus. I went 9 years between flares the last time and that was wonderful. I am not sure if I flared now what I would do because it has usually required a long acting shot of a steriod and now that I know I have diabetes that would be the last thing I would take.

My levels at the time of being put on metformin were high 100's low 200's, not all the time but enough that my doctor knew I needed some help and my A1c was over 6%. I think I told you that for a while it appeared to be helping and then that changed and I was back to square one along with not feeling good. The numbers were back to before met. I would also like to note here that I was continuing to loose weight and I was down to only eating about 5 carb servings a day.

I dropped the met at supper now because of the low numbers at fasting. I know met does not cause lows however I need to start someplace. The insulin I take is Humalog 75/25 which is an intermediate and I take this at meal time. It varies, however most of the time, depending on what kind of carb I am eating, I take 5 units 3 times a day. My script says 5 units at breakfast and 5 units at supper however I need 5 units at noon also. Every diabetic has to figure out their own insulin requirement. I can't lower my insulin because that is not going to help my fasting numbers, so I just start where I think it is the easiest.

Glad your heart has been checked out good. Do you still experience the problems you were having?

You asked me how I keep going? I have never let any of my health problems rule my life. They are just a part of my life. I do everything and more that everyone else does. I am thankful to be alive and try to live life to the fullest. I try to take good care of myself and so far it is paying off however we never know what tomorrow will bring. I found that out with my small strokes. The doctors office called yesterday and gave me my newest lab results. They were all excellent. She told me that she had not seen such a good lipid profile in a very long time.

Best of health to you, Deb!

Ginny

You know ginny you sound very much like my mother. Very thin and was once on met but she had the same thing happen. So insulin was the only thing that worked, she ate very healthy chicken and brocolli or something in that line. Her dose of insulin was low also only 12 units 2x a day. Just remember my mom was diabetic for over 55 yrs and didnt go on insulin until the late 60s so I think her panreas got really stressed I think so much has been learned since the early 50s.

Fur, I am sure you are right about all that has been learned since the early 50's. I am sure my dad would have lived a lot longer had they known more in the 40's. He was not a diabetic but he had so many things worng with him, a young man of 44.

There are no cut and drys with diabetes, we each have to LEARN what works for us and go from there.

Hi Ginny,

Thanks for the added information. You said you were only eating 5 carb servings a day and was still losing weight for awhile. I wonder if you weren't eating enough carbs? And the high sugars probably caused you to keep losing weight.

You're not on a lot of insulin. I think I'd be like you---not wait til sugars get so bad to go on it. So many people hate the idea of going on insulin, or mainly hate the thought of the needle, huh? But insulin is a natural thing our body needs and if we have to inject it to get it, then that's the way to go. It's better to start before your sugars get too high and cause a lot of damage.

I forgot to comment on your small strokes. You've been dealing with a lot. Glad to hear the lupus is under control. I hope you continue doing well (hey, they said you had 5 years to live and you're still here! I bet you'll do just fine for a long, long time!).

Glad to hear your labs were excellent, too. Keep up the good work!

You have a good attitude towards everything; I'm sure that helps a lot! I like what you said--you don't let your health issues rule your life. There are a lot of people out there with more minor health issues saying, "why me? Poor me! And they just let the issues rule them, and they really aren't living their life because of it.

My heart problems? Yeah, every once in a while, I can feel it skip a beat, or race. But like I said earlier, if my blood sugar is 150 or above, that's when I have the feeling it's speeding up, I feel hyper, and my body will sway with the beats. I think it's cuz of the high sugars. I've never had a stress test, but I have a feeling that may be next.

Unfortunately, my doctor wasn't in the office my last appointment. Her replacement went over my latest labs. I filled him in on my history with the diabetes and asked his opinion. He told me I ought to ask my doctor if I should even consider myself diabetic any more. I wasn't too sure about the guy. Ugg!

Well, thanks again for writing. YOu take care and keep up the good work! Bye for now.

---Deb.

Deb,

Just one last comment to clear things up....Yes, only 5 carb servings a day, loosing weight and high numbers. This was the reason to go on insulin for me along with not feeling well and it worked!! The insulin is what I was lacking and that was proved by the C-Peptide.

Best of health!
Ginny

Ginny - I hate to butt in, but I wondered if the c-peptide that showed low normal was fasting or during an OGT, or random? I only ask because I also had a low normal result, drawn about 3 hours after breakfast with a coinciding blood sugar of 78 - still not sure what that means.

lizzy,

You aren't butting in at all. The C-Peptide that was done on me was fasting. No blood sugar test was taken that I was aware of. I do know there is controversary and different ways to conduct the test however our hospital followed whatever procedure they were told to as they called the lab of where the blood was being sent to, to find out how much blood to draw and if I am not mistaken some of it had to be frozen. There was a complete pancreatic panel done at the same time.

My doctor also ran a regular insulin blood test on me along with my regulars back in July and it also came back low normal.