New to LADA

Laurie_S · July 15, 2018, 4:01am

Hi! New here. I just turned 40 and was diagnosed with LADA. I’m on a small dose of tresiba daily and I wear a Freestyle Libre. I seem to be doing okay most days,…I think, but I recently started experiencing hypo events. Mostly at night. I have been looking for local meet-ups or just about anyone who has had a similar experience to help me along the way. I have so many questions and I can’t find a single human who is nearby to talk to about this. I know the LADA diagnosis is less common, I feel like I will finally connect here on this forum.

Also it seems like every endo I have seen has their own ideas of how to treat me. For example, one doc instructed me to only take insulin before high carb meals… and another doc said to take a daily long acting such as tresiba. I did try to read legitimate studies and decided on my own that the doctor with the long acting treatment plan seemed best for me. Hoping to hear from others that I made the right choice. I feel like I did, because I feel much better on a daily basis for the most part. I was basically a hot mess for the previous 10+ months. I experienced extreme exhaustion to slurring my words. No clue how I made it through the school year. I couldn’t even wake up in the morning! The very next day after I took the long acting, I started to feel like my old self again. My mind was sharp and ready to do this!!! I am so glad that I listened to myself instead of the docs… because the doctors told me the reason I felt so horrible was because 1) I work full time 2) I just turned 40, and 3) I have a toddler! My apologies for spelling errors & typos… it’s late and I’m typing on my cell.Six weeks having LADA on 4 units of tresiba… a1c went from 6.1 to 5.8

Some of my questions include:

How do I sleep at night when my CGM records hypos?
GAD test result was 4,000 ish… is that normal?
Need some feed back from LADA peeps. Sine I’m not on a pump and still have some control, what’s important to know? I feel like I have to eat based on my CGM readings. I’m not even hungry half the time.
What is cosindered good control? 100-150? Here are some of my readings:

Thank you for listening if you read this.
Sincerely,

Firenza · July 15, 2018, 8:53am

Can you clarify your question? Do you mean you are afraid to sleep or…

Anything from 70 to 150 is fantastic control. Are your spikes after meals or more random? Since you are not on fast acting insulin your spikes must be coming back down on their own which means (to me at least) that you still have quite a bit of natural insulin production but not the first phase response that non-diabetics have.

What’s your diet like? Some dietary changes could get rid of those spikes without you having to go on fast acting insulin right away. Btw I’ve had type 1 since I was a baby so not LADA but diabetes is pretty much diabetes any way you look at it and you are doing a pretty great job IMO. We’ve got quite a few LADA’s on this forum like @Terry4 @Melitta and @David49 who are pretty knowledgeable on LADA topics.

mohe0001 · July 15, 2018, 4:12pm

You probably have to keep a juice box next to the bed for when night time alarms go off. Otherwise, you could decrease the lower limit of when alarms sounds. But, since your new, I would advise against that. Your not supposed to sleep through lows…technically. Your supposed to wake up and treat them. Its a pain. If your not hungry…juice box or lifesavers.

The longer that you are diabetic, the more you will trust your own intuition over the Doc’s. That will be critical to your survival. Sounds like your off to a good start. Your data looks great, so far. You may need to experiment with stuff that you are uncertain about. Even we may not be able to give you black and white answers on some stuff. Everyone has different physiology and hormones and lifestyle, so there is lots of variability between individuals. But, your LADAs will give you an excellent starting point from which to jump.

“Good” is relative. Your own definition of “good” will vary over time. Sometimes diabetes is easier than at other times. I think that most of us, longer term diabetics, would consider your data exceptionally good. It will likely become more difficult as you become ‘more diabetic.’ Its great to have training wheels now, while your adjusting to so many changes. That will help.

If things get goofy, we are always here to help. But, take what everybody says with a grain of salt…your experience may differ. If there is one thing I have learned from this forum, it is just how much diversity there is between individual diabetics. I expected us to be much more alike than we actually are.

truenorth · July 15, 2018, 5:30pm

To repeat an old refrain, welcome to the club you never wanted to join. But here we are, so welcome. Lots of support and info here! (Use the search function liberally for this forum)

To start: Your sample bg trace is just great, so you’re obviously off to a good start (that, plus having A1c of about 6 – which actually makes me wonder if your flavor of D is more than pure T1-Lada). This also means you can probably expect a pretty long ‘honeymoon’ period, which presents its own challenges because some days your pancreas will do you a favor and sometimes not, and it can be really hard to predict what kind of response you’ll get. You’re probably also in the period where a little bit of insulin goes a long way, which is also both a blessing and a challenge of its own.

Anyway, pay attention to that bg data, the trends are key, for sure be your own best advocate with the endos, and stay in touch here.

Elisa1 · July 15, 2018, 6:12pm

I was in your same shoes 9 years ago. I was what I considered a healthy individual. I was training to run a half marathon. Averaging anywhere from 6-8 miles a week. I went to my yearly physical and everything seemed well. The next day I got a call from the doctors office saying my sugars seemed high. They asked if I had been fasting for the blood withdrawal at the lab. I said yes. They asked me to come in the next day for more test. I did. And they did a glucose test. The results showed I was diabetic. Doctor came in and told me I had type 2 diabetes. He told me to watch what you eat and sent me home with metformin. I was very confused and devastated. I really wasn’t all that aware of what diabetes really was. No one in my family had it neither my parents or grandparents. I read anything I could on the internet about it. So much so, I became scared to eat. Everything I read didn’t seem to fit. And how could I get type 1 at 40. That was something you picked up before age 25. I was 5’6 and weighted 115, exercised and ate healthy. I just didn’t fall into the type 2 characteristics I kept reading about. I went back to my doctor with depression and anxiety. Asked him to send me to a specialist. It took 6 weeks to see her and by that time I was hardly eating and had lost 35 pounds. As soon as I walked into the endos office she looked at me and said, “You are definitely not a type 2.” She sent me to do more lab work and the results from that lead to a re-classification from a type 2 to LADA Type 1.5. After going through the cycle of acceptance and a handle on my severe depression I had from all this, I began to read everything and anything I could get my hands on to help me cope, deal and control my newly diagnosed disease. I saw a nutritionist who asked my Endo to put me on both long lasting and short acting insulin to help me gain some weight back. Which by the way was the best decision made. It took me a year to learn and deal with this huge curve ball that had been thrown at me but I have come out on top. I have had this and a couple other health issues for 9 years but doing pretty well. You to will overcome this as many of us have because we haven’t been given a choice. Read as much as you can and attend seminars if possible. I think one of the books I read that helped me the most was “Think like a Pancreas”. As you, I felt I had no one to help me with this or talk to or run things by. But I am here as everyone else to help you through this.

Mo16 · July 16, 2018, 12:06am

Hi Laurie,
first thing you need to do before anything else is read Dr Bernstein’s “Diabetes Solution”, it will explain everything about Diabetes and how to eat and potentially could make your honeymoon period last forever so, please do read that first.

Read “Think Like a Pancreas” by Gary Scheiner to teach you basics of insulin treatment

Reading these two books will help you understand what you’re up against and also teach you a very simple fact which is that you don’t have to be eating all the time to mitigate hypos if you tuned your basal dose correctly so that it’s not lowering your blood sugar constantly which it shouldn’t.

As you will learn most doctors will prefer you having high blood sugars than tight control and possibility of hypos so take this with a grain of salt " most doctors aren’t on your side"

Take advice from diabetics or doctors who have type 1 diabetes they know what they are talking about, the fact that less than 10% of diabetics are Type 1 makes it very difficult for Type 1 diabetics because all doctors provide you advise mostly applicable to type 2 who still produce insulin.

Good control is different to different people Dr Bernstein thinks good control is normal bllod sugars as in healthy people which is around 4.6 mmol or 83 mg/dl in a range from 3.3 to 5.1 about (60 to 90 ) that’s the golden standard and that’s what you should strive for if you want to be free from diabetes complications(HBA1C should be 4.2 to 5.1 % I think) but it requires tight control and drastic diet changes if you don’t already eat Keto/low-carb.

Basically what should happen from now on, you read for yourself , educate yourself decide on a treatment plan and discuss it with your Dr if he doesn’t agree listen to why he disagrees if you’re not convinced look for another one

for treating lows be smart about it , glucose tabs or jelly beans are best because they have fast absorbing glucose and have specific number of carbs in them (usually 4) so take one or two measure in 15 minutes and see if you need more. do not take a cookie or juice because you cannot tell how much carbs that is in the middle of the night and even if you did you probably won’t need all of it so just eat enough tablets or beans to bring your sugar to target range and park it there, if you overcompensate with a cookie it will probably overshoot and you might end up high and might need to bolus with rapid acting insulin to correct it.

Other resources:
Bright Spots and Landmines by Adam Brown

read on keto diet or low-carb diet
follow low carb topics on youtube

Laurie_S · July 16, 2018, 2:11pm

@Firenza @mohe0001 @truenorth @Elisa1 @Mo16
To my new friends listed above,
Your replies came in throughout the day yesterday while I was traveling. I went from feeling alone and confused to feeling supported and like I’m on the right track. I can’t thank you all enough for the words of wisdom and encouragement. I am forever grateful.
I’m traveling and typing on my cell, so I will try to respond the best I can. Again, thank you.

@Firenza thank you so much for the words of encouragement. To clarify, yes, I am nervous that something bad will happen while I am asleep. I’ve been told that since I do Have a good awareness of how I am feeling, I am thinking my body will wake me up if it’s in trouble. I had a few nights where my BG went super low twice and I didn’t wake up. I’m finding that a small bowl of cereal, with 1/2 banana is really working for me. Keeping me even throughout the night. I’ve tried to for a week in a row and seems perfect. Kees me around 94-120.

What are your suggestions for diet? I eat low carb but I find that if I don’t have enough carbs I get low. They suspected type 2 since I had gestational D at age 37. I have been a “low-carb-er” forever!

Thank you for the insight. I do feel like if I spike, I am able to walk to do do some type of movement for 15 min, it comes right back down. However for example, I ate fried calamari, cod, 4 French fries, and a side salad. Then went for a 10 min leisure bike ride and was going to according to my Libre. (65 it said and my BG stick said 70) I was full so I had 15g of snack carb popcorn. It spiked a tad. And then 2 hours later I had my small portion of night cereal/banana/milk.

Below is an example of a night where I slept through 2 lows. And the other example of a day where I felt horrible all day. How do you guys manage those days? What works for you to focus and feel like your on the planet? I’m a teacher, so I’m am fortunate to be off for the summer as I begin to get a better handle. This past school year prior to my diagnosis, I was a “drunk-state-zombie” most days. I Was seriously late to work and felt like I couldn’t do a good job most days.

Sincerely,
Laurie

Laurie_S · July 16, 2018, 2:19pm

@Elisa1
Thank you for sharing. This has been an emotional time for me too. So hard to wrap my head around this idea. Also, my family seems to be extremely worried. I think the more I educate myself, and the more confidence I gain in my decision making, the better we will all do.

I too consider myself an athlete. However, was running and kept getting very low within 15 min of starting. Seems like any movement bring my BG right down. Do you have suggestions? I’d like to get back to exercising, with fear of passing out. I am in a rural setting so, I am not near a lot of people when I go out for a run. I plan on getting back into triathlons once my kiddo is a little older and I hve the time to train again.

Laurie_S · July 16, 2018, 2:28pm

I slept through some of this and one time I woke up and tried to correct w juice

I think my posts are all over the place here. Sorry friends bear with me.

Laurie_S · July 16, 2018, 3:36pm

I am going to read those books for sure! Thank you.

Firenza · July 16, 2018, 6:08pm

Is it possible that the first low was caused by laying on your sensor? It’s called a compression low. That is a problem with CGM’s. Instead of eating popcorn or juice which is hard to (a) gauge how much you are eating and (b) a pain to eat when you are already full try glucose tablets or prepacked candies like jelly beans. They work extremely fast and are easy to carry around.

Working through days where your BG’s just won’t cooperate is tough and the best thing to do if you can manage it is to get your BG stabilized and back in range, it’s the only thing that will really resolve the issue. Keeping calm about the out of whack BG’s helps in and of itself because stressing over them will just make them worse.

Since you are getting scared about your BG’s at night then you should probably get an attachment to your Libre which will send your BG’s to your phone and your phone will alarm if you go high or low. I’ve heard really good things about the MiaoMiao and you would use with something like the Spike App. I’ve been using the Nightrider but it has some connection issues that might make it not as reliable as you need it to be.

Hammer · July 16, 2018, 6:38pm

For exercise, and being on a long acting insulin, you will probably need to eat before you exercise.
Setting your basal properly takes some ‘testing’. This is something that is spelled out in the above listed books.
Also note, our bodies often need different basal rates through the day/night. This is something the insulin pumps are GREAT for. But with long acting insulin, and still being in your honeymoon phase, it is harder to get a good basal rate.
Do you take your basal at night or in the morning? Even the long acting insulins have ‘peak’ time.
And finding a measurable sugar really helps correct for lows. I use ‘smarties’. I like them because they don’t melt if they get hot in a car, etc.

KellyMJ · July 16, 2018, 7:57pm

I use the Freestyle Libre and MiaoMiao along with Spike on my iPhone and the Omnipod pump. I’m LADA as well, going on 4 years now.

Compression lows are definitely a thing. I now keep the Libre on my “off” arm to reduce them, as I’m generally a side sleeper. Also keep in mind that the Libre reader doesn’t allow calibrations, so those lows you see might not be as severe as depicted. I found the data could be off significantly as compared to serum testing, and would vary more at the beginning and end of a sensor’s lifetime. My solution to this was to test occasionally and note the offset, and test always when the data didn’t match how I felt.

I am very happy with my current set of tech, and I’ve tried quite a few solutions. Good luck to you in your “new” journey. It hasn’t been easy for me, but there are things that can make it easier, including gadgets and the information and support provided here and in other social media and groups. You will learn to be your own advocate, and may have to change medical teams several times before you find one that works for you. Believe in yourself, though, and hang in there. You can do this.

-kmj

Laurie_S · July 16, 2018, 9:42pm

@KellyMJ

Thank you so much. Where can I purchase the Miaomaio? I just looked quickly and seems to not be available in the US. I think that would help me tremendously.

The compression low definitely makes sense. And those were the first few times that I registered low. Up until 6 weeks ago, I was mostly seeing high BGs. Now I see a bit of everything. I am trying to snack throughout the day, because I don’t seem to have an appetite.

As for my appetite, I never really have on and maybe it’s a tad worse at this point in time because until I get the hang of this, I have to think about everything that I eat and how it will affect my BGs. I’m hearing from many of the replies that I will get the hang of it and I feel like I am prettt in tune with how I feel in regards to what my numbers are.

Looking fwd to reading the suggestions above.

Thank you!!!

Elisa1 · July 16, 2018, 11:13pm

Well after my diagnosis I did have to stop running. I found it to hard to lug everything needed to keep from going low in a backpack. It was just to much to handle. I dedicated most of my time reading as much as I could about this disease and how to manage it. It does get easier. I know wear a pump and a cgcm which really help manage it. I have traded in my running for cycling and kickboxing. I did run shorter distances. And would eat low carb breakfast such as apple with peanut butter but no insulin. That would guarantee me from going low. Always carry something to raise a low with you. There’s so much you can eat before a hard work out. Finding an experienced person to talk to or run things by definitely helps. But I’m here.

Mo16 · July 16, 2018, 11:21pm

@Laurie_S
Exactly my same feeling first time i posted here the mount of support is amazing and you’ll never feel alone.
from what you describe it sounds like you might be taking a lot of basal(tresiba) which is constantly bringing your blood sugar down and you have to snack to offset that. Also when you feel low unless confirmed by the libre (ruling out compression lows) it might be due to your BG dropping too fast from a really high value to a moderate one. Dr Bernstein says in his book that he doesn’t set normal blood sugars (4.6) as a starting target for new patients who have had high blood sugars for a while because they tend to feel low/off at these levels. So it takes a while but what really does help is low carb , if you don’t spike your BG you won’t have these roller-coaster BGs.
Adaptation is hard at first but, you’ll get there.
My advice since you’re still honeymooning is to stay there for the longest time possible by following low carb diet (which unfortunately rules out french fries/cereal/banana and milk).
and of course as you make diet changes you have to reduce your tresiba dose accordingly and gradually.
In regards to diet, I tend to find high BGs that were brought by carbs always go down fast while exercising, while if you were adapted to low carb your BG stay stable for longer and go down way slowly during exercise. Of course it’s different from one person to another but that’s just my experience.

Terry4 · July 17, 2018, 12:21am

Hi Laurie, welcome to TuDiabetes! You are wise to concentrate now learning about diabetes. It may seem like a lot, but the available knowledge is finite, even if it is growing. I believe investment in the human software is one of the best ones you will make.

I’m impressed with all the high quality advice you’ve already received here. I just have a few general recommendations. When you’re trying to make changes, like avoiding night-time hypos, it’s good to keep track of the various things you try. Writing stuff down will help cement that knowledge in place more quickly than thinking you’ll just remember it. Unless you have a photographic memory, you’ll recall things better by writing it down. You won’t need to do this forever, but it will enhance and shorten learning and troubleshooting.

Look at these various attempts to fix thing as your own personal science experiment. While we share many characteristics with our glucose metabolisms, personal experimentation will reward you with customized data. Just realize that diabetes is a dynamic disease. What worked yesterday might not work today. Don’t get discouraged. Just pay attention to your data and try to figure out what might have caused some poor blood glucose levels. You won’t be able to decipher every last incident but I think you’ll find yourself getting better with practice.

It might seem strange to some but I sometimes see my diabetes as a bit of a game. I’ve been known to do a happy dance when I know that I’ve absolutely nailed a diabetes problem! It might seem corny, but diabetes is an insidious, sometimes baffling, tough opponent. When I dominate diabetes, I take pleasure. When diabetes gets the best of me, I just blame the diabetes, try to take a lesson, and then move on.

Good luck! I hope to see you visit here regularly. You’ll know you’ve made progress when you’ll feel the urge to reach out to someone else because your recognize their experience!

I am also LADA. It’s been 34 years; I was diagnosed at the age of 30.

Firenza · July 17, 2018, 5:21am

Here’s the link for the MiaoMiao. When I tried typing it into google it didn’t come up in the results (weird).

https://www.miaomiao.cool/buy-now

Also here is a guy on youtube that does lots of videos on diabetes tech and I’ve come to rely on his recommendations. He has a few videos on the MiaoMiao.

Justin8 · July 17, 2018, 10:51am

Hi Laurie,

I hope you find some useful advice and comfort from the wide variety of experiences that folks share here. I was diagnosed with LADA about two years ago at age 37. I had very high levels of GAD antibodies and an A1C over 11, despite perfectly normal fasting blood glucose levels just two years before.

I went on Lantus and Metformin the same day. My numbers did improve quite a bit, with just basal insulin and Metformin, but my meal spikes would shoot up to the 250/300s. My doctor put me on Glimiperide, which worked a bit too well. I had numerous unpredictable lows and had to eat my way out on many days.

After a few months, I asked for Novolog for meal-time blouses instead of the Glimiperide for lowering post-meal spikes. The doc said it was up to me and that was a good decision; fewer hypos for sure.

I got my A1C down into the 5.0 - 5.8 range, but I gained about twenty pounds by having pretty tight control. For me, I found that I needed about 18-20 units of Lantus for stable basal rates; however, I would frequently have lows while exercising. And I never had Novolog on board while exercising. So I tended to shorten or lighten or avoid my exercise. Which of course, only hastened the weight gain.

For the last eight months or so, I have be eating a Low-Carb, High-Fat diet. It was a tough decision, as I love to cook and eat and my wife is an exquisite baker, so it meant giving up many of my favorite foods (pasta, nice breads, and bagels, oh glorious bagels).

However, I have found that it dramatically improved my daily energy levels, increased my comfort with exercise by reducing hypos, and lowered my insulin needs. I now take about half as much basal (8 units) and 0-2 units of Novolog, along with Metformin. And as long as I am 90 or above, I can put in a solid hour to 90 minutes of elliptical/cross-country skiing/weight lifting and not see much change in BG levels.

I still don’t have a CGM and I go back and forth on getting one. I don’t want a pump unless I absolutely have to have one. For now, I am finding that I’d rather spend my time focusing more on my diet and exercise for better health, than spending more time on mastering large doses of insulin.

I’m sure I’m still in my honeymoon phase as well, so I know there is an X-factor in there, which may change at any moment. But for now, the LCHF diet and exercise is really helping. I saw my endo last week. I had lost 16 pounds in six months and my A1C dropped to 5.4. It might not work forever, but it’s working for now.

I’m not a religious person, but I think the Serenity Prayer is a particularly appropriate philosophy for managing this confounding disease.

Grant me the serenity to accept the things I cannot change;
Courage to change the things I can;
And the wisdom to know the difference.

Best of luck,
Justin8 (I love that I got ‘ate’ as my user handle. Cracks me up.)

Laurie_S · July 17, 2018, 2:43pm

@Firenza
Your rock!!! Thank you! I will take some time and look over these. I think alarms and not having to use the swiper will be a huge help.

Honestly, I am already starting to feel more mentally prepared from your help and the others who have responded to me. I am forever grateful to have found such caring and kind humans here.