Need Advice & Opinions

Type 1 and LADA New to Type 1 Diabetes
1

Hey everyone… I am new here. I would like your opinions and advice if yah don’t mind :slight_smile:

I am a 26 year old female - I have had low blood sugar for years, since my late teens at the least, though I have never been officially diagnosed with hypoglycemia.

The low blood sugar started getting worse after my first pregnancy, and then even more so after my second in 2002. My OGTT during my 1st pregnancy was 135 and my OGTT during my 2nd pregnancy was 137.

Anyhow…during these “low blood sugar” bouts I get real weak, shaky, faint feeling, knees feel like there gonna give, and occasionally tingly numbness and my arms feel real fatigued to lift them. I was always told by my family that low blood sugar ran in the family and just to drink some orange juice or eat some since or something similar and so I did, it usually helped pretty well. I get tons of headaches with my highs and lows.

I used to be way more active - working out 4 to 5 hours a day, doing martial arts (MMA) 2 hours in the evening, running 5 miles a day and upon waking up would do 1 hour intense taebo workout - I got really sick with pneumonia twice in a short amount of time and I had a hard time getting back at it, and then broke my hand last year and every finger in that hand as well, so I was down from my normal workout for awhile - But I am still pretty active, I have 2 kids, lots of acreage, walking all over it, gardening, going on walks with my kids, 3 story house, up and down stairs. Working our horses, etc.

Since the past 1 year I have gained an embarrassing 25 lbs! And not much has changed, I am still VERY active. I cannot lose the weight for the life of me. I am 5’5 - always been around 115 to 125 but bulked up to 130 when I am working out a lot -

Last year I was at a family members house and I felt really off, and I assumed it was “low blood” sugar again and as I was getting ready to down a huge soda my grandma who is diabetic wanted to test my blood sugar, she did and it was almost 300!!!

So from that point on I have been keeping track of my blood sugar and my post prandials have been high but are starting to get higher and stay there longer.

The problem is that I still have lots of bouts with low blood sugar (in the 30’s and 40’s and 50’s) daily!

Last fall I went to a health clinic and they did a finger prick 3 hours after I had last eaten and I was almost 180 and they drew blood for an A1c - My a1c was 4.6 or 4.7 - They ended up saying yah know your A1c is normal - so your fine. I left it at that, though I still did not feel right.

My high post-prandial spikes have gotten more and more and I feel incredibly icky from them. Like when I spike to 280 after eating a 6 inch subway oven roasted chicken breast sandwich and then by 3 hours I am down at 60 or 70 - This is an every day occurrence of highs and lows.

I just got insurance so I figured I would go get tested some more - I told the dr that my last A1c was normal and that my FBG is always under 100 every morning. That my problem for now is my post prandial spikes (which I am told is my second phase insulin?) and the lows and how sick it makes me feel. Just real tired, lethargic, no energy, kinda foggy. I have 2 kids, I just cannot continue to feel like this yah know, It takes a lot from them when I nap after I eat cause I am so tired, or I am lightheaded cause I am 280 or because I just dropped 200 points in 1 hour and have an incredible headache.

I even took in 2 weeks worth of charted numbers to the dr -, Before eating, 1 hour post, 2 hour post, FBG, and Bedtime. I even showed where I go real low - I had this nicely laid out for him to see the trend with my high and low BS #'s - He agreed and said un-officially I would say you are diabetic but lets run some tests to see whats going on -

Well the nurse who is covering for the dr and his nurse while they are on vacation called and left a voice mail for me and said your FBG was 91 and your A1c is 4.6 (same as last time) so I would say you are not diabetic and the dr wants you to bring your meter is to make sure it is working. HELLO… I just compared my meter with my daughters drs office meter and it was 1 point off. Pretty much right on the money - I also have 4 meters, when I get a real high or low I always double check with another meter and they are accurate.

I am still waiting on a few other tests that were ran including the c-peptide test.

I am getting so frustrated that I continue to feel like garbage, and getting no answers.
I’ve done a lot of research and how found that lots of highs and lows can kinda balance out the A1c so to speak and they should not be used as diagnosis.

Oh and I should mention that tons of people in my family are diabetic, some T2 and some T1 - 1 was even diagnosed as a child. All my grandparents are diabetic and on insulin, even a few great grandparents who have since passed away. My dad has psoraisis which I am told is an autoimmune disease and he has blood sugar issues as does my mom but neither of them will go to the drs - you know, if you ignore it then it will be ok - huh.

Can anyone give me some opinions and advice on this? It’s frustrating me to no end, how can I have all these highs and lows and my A1c stay pretty much the same as in NORMAL! I just don’t understand this and I know, ABSOLUTELY that I’m not trippin, I mean my meters are working, I have control solution etc and brand new strips for my meters. What’s going on?

Thanks.

2

Hallo Delecia,
You will find the same experience here on many pages,the good thing is you started looking after yourself and collecting information added to seeing your doctor and doing tests.HbA1c is not recommended as a way for screening for diabetes by ADA ,but it gives an idea for undiagnosed diabetes.
You are on the right track,but do not worry yourself a lot and go on enjoy your beautiful life.
My best wishes

3

My mom had been having low blood sugars for some time, and would feel very foggy with low energy a couple hours after eating. Her doctor ordered an A1c and fasting tests, but they showed nothing. I insisted she see an endocrinologist so she could get some answers. I am T1 and her mother is T2, but diabetes did no seem to be it. She was diagnosed with Impaired Fasting Glucose, which basically means her pancreas wasn’t releasing her insulin to match her food intake. It would pour the insulin out at once, so she would go low before her food hit (sorry, I know these aren’t medical terms). They put her on glumetza and she feels a lot better. She still has the occasional fuzzy feelings, but nothing like before. If I were you, I would definitely see an endo and get a specialists’ opinion.

4

Hi Delecia! Sorry to hear about your experiences. The first thing that came to my mind when reading your story was MODY. It is a rare and unique form of diabetes and one that many doctors miss. I will ask one of our members who has MODY to read your discussion. In the meantime, here are some links to check out:
Link 1 (a PowerPoint presentation)
Link 2 (someone diagnosed with MODY posting in another forum)
Link 3 (a scientific journal article, which I don’t understand but maybe you do!)

I hope that you are able to figure this out and start feeling better soon!

5

Have you had antibody tests done? I also have normal fasting levels (always under 100) and my PP numbers go up really high very quickly but then crash before an hour. I had hypoglycemia all my life, even as a child. My first endo said all was well, my OGTT was 95 fasting, 175 at an hour, 175 at 90 minutes and back to 111 at 2 hours. But at 3 hours I was down to 56 and feeling terrible. When I did my own test with a glass of grape juice I went up to 190 at 45 minutes and down to 50 at an hour. I frequently have 200+ turn around numbers in less than an hour. Often I miss the high because it only lasts a few minutes and I don’t catch it with my meter. Turns out I am antibody positive (just barely) and extremely early stage LADA. I have impaired first phase release which means I don’t store insulin well. My second phase comes on like gangbusters, hence the swings and the hypo episodes. I was exhausted for several years, couldn’t understand it because I am a healthy, active person. Interestingly, I also put on 20 pounds during those couple of years. I had always been a perfect size 10 and never put on an ounce. Could eat anything I wanted. After I got my BG stabilized I lost nearly the weight instantly. I think it’s from extra insulin from those PP releases. So if you have checked out the antibodies and it’s not LADA, I agree with Kristin that it could be MODY. Either way, you need to take insulin. Small amounts will make all the difference in the world and prevent you from burning out your beta cells. I take 5 U levemir in the AM and 2-3 units Novolog with meals except if they are extremely low carb. Good luck and keep us posted.

6

Thanks everyone for the advice and opinions! Isn’t LADA - T 1.5?
I will request a referral for an endo. It’s irritating when the dr comes with the “oh your meter is wrong” -

Toni - With your mom having Impaired Fasting Glucose what were her #'s like? And do they think that she will eventually be a full fledged diabetic?

Kristin - I will read through all of those links! I appreciate it!

Libby - The only tests that I’ve had are the FBG, A1c, C-peptide and I do not have the c-peptide results back yet. With having the early stages of Lada what are you doing or what are you on? Was it hard for the doctor to diagnose you since you were in the very early stages?

Thanks

7

I know at one time my mom dropped down to 36 (she called me)! As for high numbers, she only tested when she felt fuzzy, so this would’ve been at low times. If she did run high, it must’ve balanced out with her lows, as her A1c number was fine. They did not mention anything about it turning into diabetes.

8

I pretty much had to diagnose myself and tell my doctors what I wanted to take! My C-peptide was inconclusive, as I expect yours will be since it just measures if you are still making insulin. I started on 2-3 units of Novolog with meals and have since added 5 units of Levemir which I take in the morning. I have a fasting BG of about 88 most mornings and rarely go over 120 after an hour. I do eat low carb and don’t usually take any rapid insulin with breakfast or lunch. I usually don;t eat any bread, pasta or rice, and limit starchy veggies like corn and potatoes. I try to exercise daily and do have to be careful that I eat a little something extra when I do any vigorous exercise as I tend to go low now that I’m on a basal.

9

That’s no fun! I’ve tested in the 30’s and it is a icky feeling. Then again I run up in the 300’s sometimes but mostly mid 200’s - My A1c is fine too which just makes no sense to me.

10

That’s where I am though I have not “diagnosed myself” I know something is not right though the dr’s don’t seem to listen ugh.

My fasting’s are generally normal - A few times I have woke up in the high 60’s or low 70’s and a ocasionally low 100’s - But for the most part they are between 83 and 91.

At 1 hour I tend to spike highest - Always over 180 and quite frequently well over 200 to 250 - I do stay high usually for a bit then start coming down to normal range or low. There is no ryhme or reason. Baffles me, it really does.

11

This sounds totally consistent with impairment of first phase insulin release. This is usually the first thing to go in LADA, MODY and also in Type 2, I believe. That’s the stored insulin. So when you eat, your BG goes way too high compared to normal folks. Then second phase kicks in and you come down, often quickly, but not always. That might depend on what you eat and your body’s ability to produce insulin quickly enough. As I understand it, your pancreas is fooled into thinking that you ate huge amounts of carbs. Because of the missing first phase, your BG is abnormally high. So the beta cells release extra insulin and you can end up with a low.

12

It may be good to start following the rule of small numbers immediately. Less carbs would likely mean less swings in your blood sugar.

13

Gosh Libby…I have the same exact problems…we are one in the same!!! My GB’s can change at the drop of a hat and sometimes as much if not more that 80 points in a matter of minutes leaving me no more that a slug feel the rest of the day. It’s like these irratic changes take a severe toll on the body…I know I feel it for days sometimes after I’ve had a day such as that. Mine have gone from 289 (it is my recorded highest GB thus far) and has dropped to a mere 120 within a 20 minute time frame. It leaves you with a very yucky feeling that has to be endured :(…

I feel for you…because I know how it feels completely.
-Barb :slight_smile:

14

Hi, Barb,
I am now on a small amount of basal insulin and that really helps smooth out the roller coaster ride. How do you manage?

15

Sounds ike your first phase response is gone or damaged. It would probably be wise to eat like a diabetic for a week or so just to see if it helps with your symptoms. BTWm tiy you have symptoms like I had in my teens and twenties… Let us know what the verdict is.

peace and good health
danny weems