T1 LADA just diagnosed

[Inka]

@Mr Dog Just to be pedantic, insulin is measured in units not mls. A unit is a tiny, tiny amount.

There’s nothing wrong with bagels. What you’ll find gradually as you become more experienced is that you’ll be able to move the time you inject further in advance of your meal in order to reduce the spike. As an example, I have to bolus 30mins in advance of breakfast as that’s my most insulin resistant time.

Type 1 is largely about appropriate use of insulin rather than limiting carbs. The saying is that it’s a marathon not a sprint, so take things slowly and be patient. It takes months to get a handle on things and, even for those who’ve had Type 1 for decades, perfection is impossible. Remembering that can help hugely.

 

[richardmillar11]

Yes dry mouth - not nice company!!! Did you have your symptoms for long? I had started to notice after the last lock down I started wearing clothes that I didn't have on for a while were looser but thought great. Fast forward to September past and clothes that were tight on me were much looser. Noticed it all off legs and lower body. So went to the Dr and he said at that stage I was spot on for my height and was a healthy weight. He rang me two days later to tell me I was type 2 and I had a complete melt down and changed my diet that day. Over the course of the following week I lost about 12 pounds and weight remained stable for about 5/6 weeks when he told me I was type 1 and I lost about another 1/2 stone. I think it was stress and worry. I should not have been surprised at the type 2 diagnoses as the previous year they told me I was pre-diabetic with an A1C of 43 which dropped to 42 this time last year and so I put it out of my head and started eating again.

Sounds like you have had a much more stressful time with being in hospital and starting medication but it really sounds like you have got to grips with it already and are managing. I think going forward it will all be about being organised and eliminating stress in our lives. Like you I now eat a lot of salmon. I don't find my spikes are as high after dinner with a change in diet and if I go for a walk I can bring sugar levels down to 5 ish but they then rise again at bed time and are high in the morning.

Glad to be in touch and know that there is someone else in the same boat as myself!

 

[richardmillar11]

PS you are doing the right thing by contacting the hospital. The advice given to me by the hospital was to contact them if I notice that levels are above 10 and remain there and don't come down.

 

[Mr Dog]

@Mr Dog Just to be pedantic, insulin is measured in units not mls. A unit is a tiny, tiny amount.

There’s nothing wrong with bagels. What you’ll find gradually as you become more experienced is that you’ll be able to move the time you inject further in advance of your meal in order to reduce the spike. As an example, I have to bolus 30mins in advance of breakfast as that’s my most insulin resistant time.

Type 1 is largely about appropriate use of insulin rather than limiting carbs. The saying is that it’s a marathon not a sprint, so take things slowly and be patient. It takes months to get a handle on things and, even for those who’ve had Type 1 for decades, perfection is impossible. Remembering that can help hugely.

Thanks for pointing it out! Units that is, I did wonder. The nurse just said similar actually about timing

 

[Mr Dog]

Yes dry mouth - not nice company!!! Did you have your symptoms for long? I had started to notice after the last lock down I started wearing clothes that I didn't have on for a while were looser but thought great. Fast forward to September past and clothes that were tight on me were much looser. Noticed it all off legs and lower body. So went to the Dr and he said at that stage I was spot on for my height and was a healthy weight. He rang me two days later to tell me I was type 2 and I had a complete melt down and changed my diet that day. Over the course of the following week I lost about 12 pounds and weight remained stable for about 5/6 weeks when he told me I was type 1 and I lost about another 1/2 stone. I think it was stress and worry. I should not have been surprised at the type 2 diagnoses as the previous year they told me I was pre-diabetic with an A1C of 43 which dropped to 42 this time last year and so I put it out of my head and started eating again.

Sounds like you have had a much more stressful time with being in hospital and starting medication but it really sounds like you have got to grips with it already and are managing. I think going forward it will all be about being organised and eliminating stress in our lives. Like you I now eat a lot of salmon. I don't find my spikes are as high after dinner with a change in diet and if I go for a walk I can bring sugar levels down to 5 ish but they then rise again at bed time and are high in the morning.

Glad to be in touch and know that there is someone else in the same boat as myself!

Yes good to be in touch, all your symptoms do sound very familiar, especially fitting into old t-shirts! Although my significant weight loss was quid rapid, let's say between 2 to 4 weeks thinking about it. Stress as well definitely contributes to weight loss! Dry mouth and thirst was only for about a week previous to going to A&E.

So did your type 2 initial diagnosis switch to type 1 in the end?

 

[richardmillar11]

Yes good to be in touch, all your symptoms do sound very familiar, especially fitting into old t-shirts! Although my significant weight loss was quid rapid, let's say between 2 to 4 weeks thinking about it. Stress as well definitely contributes to weight loss! Dry mouth and thirst was only for about a week previous to going to A&E.

So did your type 2 initial diagnosis switch to type 1 in the end?

Well we have to wait and see. The GP switched the diagnosis from type 1 to 2 but the hospital said they don't know we just have to wait and see how it pans out and they will review me in 3 months time.

 

[pondita]

Hi Richard, the dry mouth and thirst was relentless wasn't it! This has also subsided for me after the initial treatment. It's really reassuring that you say you feel physically fit, brilliant.

Last night I ate 2 salmon steaks, salad and a bagel and took 6ml of Novarapid, couldn't believe that I didn't have an after meal spoke at all (flash tracking on a libre). I was in range for bedtime for the first time (hadn't been lower that 12 in hospital spiking to about 18 an hour after food). I set an alarm to scan the libre every 2 hours through the night and was hovering around 8/9. Then on waking, I saw a slight rise. Took my Levemir as directed 10ml and 6ml of Novarapid and ate 45g carbs in a bagel, cottage cheese and black coffee, the whoosh up to 21.5 within an hour and a half. So I took 3ml Novarapid and went for a walk with a pocket full of jellybabies haha. I then read a bagel is a terrible choice as the carbs are super fast release, in fact the article mentions worse than a donut!

Currently sitting at 12 Blood Glucose and calling the hospital nurse as directed on my discharge notes.

I'm finding this forum super helpful!

HI Mr. Dog. Welcome to our group! 🙂 I developed diabetes during 2020, and went into the hospital in DKA in November. All my autoimmune antibodies were through the roof, and I was diagnosed with LADA. I've been on insulin ever since. There is a lot to learn, but your obvious commitment to learning and maintaining vigilance will make your life so much better. Yes, that dry mouth was the most persistently WORST of all my symptoms I had before my diagnosis. Ugh. Also, yes, what others say about bagels; I haven't had one since my diagnosis, and I love bagels. Maybe someday? 😎 About your having a rise in the morning upon waking. I take Lantus as my basal insulin, and I've found that as it gets closer to being due, any food I've eat requires more insulin: carb. About exercising, I've always been VERY active. I tried different ways to handle my blood glucose during exercise. But the way I've settled, which works best for me, is to have a normal blood glucose to start the exercise, ie, take appropriate insulin per carbs for your pre exercise meal (note: have to time insulin and exercise, but that's something you'll learn). I have more energy when my glucose starts out normal. Then I take organic juices (James White has been my fav, and I can order directly from the company. Carrot and beetroot are my favourites) with me, and test my Libre (yes, I LOVE LOVE LOVE my Libre) often, and drink the juice as needed. I've found the juice has a high glycemic index, so onsets quickly, but doesn't stick around like a starch would. And it's so good for you !! And, "Think Like a Pancreas", great book. Reading it was a big turning point for me, taught me a lot. All the best. This forum has been very helpful for me.

 

[Mr Dog]

HI Mr. Dog. Welcome to our group! 🙂 I developed diabetes during 2020, and went into the hospital in DKA in November. All my autoimmune antibodies were through the roof, and I was diagnosed with LADA. I've been on insulin ever since. There is a lot to learn, but your obvious commitment to learning and maintaining vigilance will make your life so much better. Yes, that dry mouth was the most persistently WORST of all my symptoms I had before my diagnosis. Ugh. Also, yes, what others say about bagels; I haven't had one since my diagnosis, and I love bagels. Maybe someday? 😎 About your having a rise in the morning upon waking. I take Lantus as my basal insulin, and I've found that as it gets closer to being due, any food I've eat requires more insulin: carb. About exercising, I've always been VERY active. I tried different ways to handle my blood glucose during exercise. But the way I've settled, which works best for me, is to have a normal blood glucose to start the exercise, ie, take appropriate insulin per carbs for your pre exercise meal (note: have to time insulin and exercise, but that's something you'll learn). I have more energy when my glucose starts out normal. Then I take organic juices (James White has been my fav, and I can order directly from the company. Carrot and beetroot are my favourites) with me, and test my Libre (yes, I LOVE LOVE LOVE my Libre) often, and drink the juice as needed. I've found the juice has a high glycemic index, so onsets quickly, but doesn't stick around like a starch would. And it's so good for you !! And, "Think Like a Pancreas", great book. Reading it was a big turning point for me, taught me a lot. All the best. This forum has been very helpful for me.

Hi Pondita sorry I didn't reply sooner! Sounds similar to my case I was at 25+ mmol and 3.0 keytones with ketoacidosis when I went to A&E last week. Yes lots to learn I have been reading non stop! I will order the book! Think like a Pancreas I like it!

I love the libre it is saving my mental health tbh. Digital scales too. I have been attacking this like a mad monitoring scientist and got a few results, I have managed to flatten the curve on my morning high from 18mmol to 15mmol the last 2 days by adding tbsps of peanut butter to my oats and taking the fast insulin 30 mins before eating I upped that today to 2tbsp and will try adding protein powder tomorrow. Although.... I have had afternoon lows now and hypos 3.1 mmol at exactly 3 oclock two days in a row. Treat with 15g skittles (13g sugars) followed by 2 oatcakes 12g slow carbs. Brought me up 4mmol to sit around 6/7.

After the first day I repeated exactly the same lunch and walk (like software testing you discover the error then try replicate it before altering a variable to ameliorate it), so today I will either drop my lunch insulin by 2 units or alter the carbs from 30 to 40/50g and repeat the same walk at the same time to the same place and see what happens.

I found some good articles on research into stem cells replacing beta cells in the Pancreas this morning as an aside.

https://www.nytimes.com/2021/11/27/health/diabetes-cure-stem-cells.html

A new therapy for treating Type 1 diabetes

Promising early results show that longstanding Harvard Stem Cell Institute (HSCI) research may have paved the way for a breakthrough treatment of Type 1 diabetes. Utilizing research from the Melton Lab, Vertex Pharmaceuticals has developed VX-880, an investigational stem cell-derived, fully...

hsci.harvard.edu

Research advances one step closer to stem cell therapy for type 1 diabetes

Scientists are developing a promising approach for treating type 1 diabetes by using stem cells to create insulin-producing cells (called beta cells) that could replace nonfunctional pancreatic cells.

www.sciencedaily.com

 

[Mr Dog]

I was going to ask, as I'm not all that familiar with using forums, is there an app for this or would you just generally log into the website as a favourite?

 

[Inka]

Just the website @Mr Dog 🙂 no app.

I admire you scientific approach and focus😎 However, you’ll soon find that sometimes things go wrong for absolutely no reason. We’re organic bodies not machines - hence the difficulties of control. Control isn’t a problem you solve and then forget about, it’s an ongoing daily (or hourly!) process. Things change; they change again; then they change back to where they were in the first place. They do that repeatedly and often randomly. There are at least 42 things that affect our blood sugar. Perfection is impossible and it’s not something to aim for as it will mess with your head over time.

I’d also add that as you’re in the honeymoon period, you’ll probably still be making a little insulin of your own. This insulin tends to appear randomly, and often too late and too much. So, a certain level of spike after eating is usual at this stage. Your own insulin may well bring that down a few hours later (too much insulin, too late), thus you risk hypos if you try to beat down the spike too fiercely with injected insulin. That’s why early in diagnosis people are advised to be back in range by the next meal not worry too much about reasonable spikes. The biggest concern early on is hypos, and they can be fierce, so avoiding them as much as possible should be a priority.

 

[Mr Dog]

Just the website @Mr Dog 🙂 no app.

I admire you scientific approach and focus😎 However, you’ll soon find that sometimes things go wrong for absolutely no reason. We’re organic bodies not machines - hence the difficulties of control. Control isn’t a problem you solve and then forget about, it’s an ongoing daily (or hourly!) process. Things change; they change again; then they change back to where they were in the first place. They do that repeatedly and often randomly. There are at least 42 things that affect our blood sugar. Perfection is impossible and it’s not something to aim for as it will mess with your head over time.

I’d also add that as you’re in the honeymoon period, you’ll probably still be making a little insulin of your own. This insulin tends to appear randomly, and often too late and too much. So, a certain level of spike after eating is usual at this stage. Your own insulin may well bring that down a few hours later (too much insulin, too late), thus you risk hypos if you try to beat down the spike too fiercely with injected insulin. That’s why early in diagnosis people are advised to be back in range by the next meal not worry too much about reasonable spikes. The biggest concern early on is hypos, and they can be fierce, so avoiding them as much as possible should be a priority.

Good insights thanks, I think if I can learn to control as much as I can and avoid what is going to definitely spike and drop levels it's a safety net for when other variants you mentioned kick in. There's always going to be a reason for whatever is going wrong none of it will be random, although sure, I wouldn't necessarily know why or what has caused the fluctuations. I'll need to read more on the 42 other reasons! Just got a Fitbit for more biofeedback and the latest update allows you to log blood sugar alongside the food, heart rate, temp, blood oxygen all all that stuff.

The honeymoon period you mention is a very good point, I wonder how much if any my Pancreas is still producing.

Good to get some perspective from someone with experience cheers.

 

[stephknits]

Hey, here are the 42 things

 

[Mr Dog]

This is great thanks!!!

 

[pondita]

Just the website @Mr Dog 🙂 no app.

I admire you scientific approach and focus😎 However, you’ll soon find that sometimes things go wrong for absolutely no reason. We’re organic bodies not machines - hence the difficulties of control. Control isn’t a problem you solve and then forget about, it’s an ongoing daily (or hourly!) process. Things change; they change again; then they change back to where they were in the first place. They do that repeatedly and often randomly. There are at least 42 things that affect our blood sugar. Perfection is impossible and it’s not something to aim for as it will mess with your head over time.

I’d also add that as you’re in the honeymoon period, you’ll probably still be making a little insulin of your own. This insulin tends to appear randomly, and often too late and too much. So, a certain level of spike after eating is usual at this stage. Your own insulin may well bring that down a few hours later (too much insulin, too late), thus you risk hypos if you try to beat down the spike too fiercely with injected insulin. That’s why early in diagnosis people are advised to be back in range by the next meal not worry too much about reasonable spikes. The biggest concern early on is hypos, and they can be fierce, so avoiding them as much as possible should be a priority.

I so agree with you, Inka ! It's all an ongoing daily, or hourly, process. I've begun to think of my diabetes as spoiled and narcissistic, like the diabetes is always saying, "me, me, me". LOL I can't go too long without thinking about it, or it'll jump up and get my attention. LOL It is what it is, and I'm happy my pancreas functioned automatically for 60 years. And I'm so happy that modern medicine has the tools we need to manage diabetes, and to live a good life.

 

[Mr Dog]

Yep I agree I'll be monitoring this forever now! the tech is incredible and it looks like more advances to come. The flash monitoring makes this constant checking no bother and I read about Dexcom which has continuous glucose monitoring which I am thinking could be very useful to have for a big trip like a month away to monitor all the changes due to time difference, temperatures etc in (almost) realtime. Fantastic.

 

[helli]

Yep I agree I'll be monitoring this forever now! the tech is incredible and it looks like more advances to come. The flash monitoring makes this constant checking no bother and I read about Dexcom which has continuous glucose monitoring which I am thinking could be very useful to have for a big trip like a month away to monitor all the changes due to time difference, temperatures etc in (almost) realtime. Fantastic.

If you are techy minded and have an Android phone*, you can convert a Libre 2 to a CGM for no additional cost using unofficial apps such as Diabox or xDrip.
I have been using xDrip for a few years and happy to glance at my phone (I have my BG on my lock screen) throughout the day and now find scanning tedious.
The added advantage of these apps is that you can calibrate the Libre readings with finger pricks making them more reliable.


* I believe there may be Apple alternatives but I am an Android user so not familiar with iOS options.

 

[Mr Dog]

Booooooom that's awesome, all over that now thankyou!!!! I do have Android and I have been checking delays with NFC logged sugars on the Glucoman app.

 

[helli]

Booooooom that's awesome, all over that now thankyou!!!! I do have Android and I have been checking delays with NFC logged sugars on the Glucoman app.

The best source of xDrip information is their Facebook group. You cannot download it from the Google Play store but there is a github link on the facebook group along with some documents.

 

[Mr Dog]

I just read, I think I'll wait until I have a backup sensor incase it goes Pete Tong

Post | Minimal Looper

www.minimallooper.com

 

[Inka]

@helli I know you’ve mentioned this before and it does fascinate me, but how techy-minded would one have to be to set it up? I’m not sure whether I’d count myself as techy-minded or not! Is it possible to kind of give an example of a level of techyness? Or does the fact I’m even asking, disqualify me?