New type 1 diabetic

[Jo162]

Hello, i have been diagnosed with type 1 diabetes about 1 month ago. I found out after feeling the symptoms of hyperglycemia for 2 years ( Thirst, Frequent urination, weight loss ) i had been to the hospital many times for these symptoms and they would always act like i was just crying wolf and send me back home. Its when i had been sick all day vomiting everything i ate and starting hyperventilating i called the ambulance when they confirmed i was in ketoacidosis. The first few days out of the hospital i had an average of 12mmol which made me really sad because i wanted to be perfect with something i really did not understand. Doctors told me to take 6 units of humalog (fast acting) before each meal and 6 units of slow acting before sleep. Now i have been taking on average 10 units before each meal and 6 units before sleep and my average is now 7.7mmol (i am using insulin pen, i will get pump soon with dexcom g6 hope it will help for better average. I am scared (*) of my condition, each time i get reading over 10mmol and that yellow light apears i get really down because i dont wanna lose my vision or limbs. I feel like 30 units of fast acting insuline + 6 of slow is a HUGE amount, i dont have the BEST eating habbits, but i do eat KINDA healthy.

Honestly everyone in my family says i will get threw this i am strong and i will be okay and live old, which makes me happy and feel better but really it would feel so much better for a type 1 like me to tell me that everything will be fine. I am scared because i had been 2 years with high blood sugars its already too late and i will die young. I am scared please help me.

(*)edited by a moderator to remove swearword.

 

[himtoo]

Hi there @Jo162
welcome to the forum !!
It sounds as though you didn't get great care for those 2 years but as you now finally have a type 1 diagnosis you seem to be coping really well after only 1 month .............my best advice is to be kind to yourself -- you have had a great shock to your body and it takes time to fully adjust ...........hopefully the fact I am writing to you after 48 years as a type 1 diabetic and i still have all my limbs and my sight should give you some hope ..

 

[Jo162]

Hi there @Jo162
welcome to the forum !!
It sounds as though you didn't get great care for those 2 years but as you now finally have a type 1 diagnosis you seem to be coping really well after only 1 month .............my best advice is to be kind to yourself -- you have had a great shock to your body and it takes time to fully adjust ...........hopefully the fact I am writing to you after 48 years as a type 1 diabetic and i still have all my limbs and my sight should give you some hope ..

i am 25 years old and my dream is to make it to 60+ without any major complications. The fact you have been living with this for over 40 years and had no major complications is truly inspiring and i truly hope i can follow in your footsteps. When i was diagnosed i thought it was over for me, but i am gaining hope and strength every day because of people like you. I really hope keeping my A1C under 7% will let me enjoy the beauty of life to the fullest. Ive always loved life, but being diagnosed has made me realized just how much, which is why i am very scared. ( I will get dexcom g6 in the next few weeks and a pump in the next months and i hope this will help me get easier control of my BG ). I would love to get omnipump on a closed loop, i am so exited.

 

[MarkMunday]

... I am scared because i had been 2 years with high blood sugars its already too late and i will die young. I am scared please help me.

Reading this reminds me of when I was diagnosed T1 42 years ago, at age 21. Yes, it is scary, but nothing you can't handle. Diabetes treatment has improved so much that, as long as they look after themselves, people with it live full lives and eventually die from the same things as non-diabetics. There are of course no guarantees, though. Some diabetics get bad complications in spite of good control. We can only do our best to achieve our control targets. It requires moving up the never ending blood glucose control learning cure.

Worrying is an unproductive use of energy. You will get more mileage from focusing your energies on learning what affects blood glucose and how to manage control. Essentially, there are 3 controllable variables - food consumed, insulin protocol (insulin type, timing and dosages), and exercise. You will discover that lots of other things affect blood glucose too. Over time, the way we respond to insulin also changes. So the controllable variables are a good starting point. Try things out and use your meter or CGM to see what happens to blood glucose. Then do more of what works well and less of what doesn't. That way control improves and complications are hopefully avoided.

 

[Jo162]

There are of course no guarantees, though. Some diabetics get bad complications in spite of good control.



I think this is one of the things that scares me the most, but i remain hopeful and will never give up no matter what

 

[Wayward Blood]

Hiya Jo,

you’ve made the choice to make the effort, and you’ve made it at the start of your journey with diabetes rather than decades in after complications. Changing to a low carbohydrate diet has saved my sight and ultimately my life. I recommend this video to everyone I can, as it’s fantastic:

All the best, and keep posting.

 

[Jo162]

Hiya Jo,

you’ve made the choice to make the effort, and you’ve made it at the start of your journey with diabetes rather than decades in after complications. Changing to a low carbohydrate diet has saved my sight and ultimately my life. I recommend this video to everyone I can, as it’s fantastic:

All the best, and keep posting.

i am very curious to know how a low carb diet is so good, because you need to inject less insulin? how much is considered a low carb meal 50grams of carbs? i eat of average 70-100grams of carbs per meal

 

[TashT1]

I was diagnosed 6 weeks ago & it is really hard. Like you I was keen to get control quickly, so I read everything I could & decided to test a low carb diet (20g per meal).

It worked great, my numbers were looking perfect & I was in a target range of 5.3 - 7.8 mmol 90% of the time. Then my life got busy (stress & more physical activity), I lost control & was going low 40% of the time. A slight lowering of insulin & an increase of carbs and this week my lows are reducing & my highs aren’t too high.

My point being the experience of the past 6 weeks is a rollercoaster both emotionally, physically & number wise. Getting upset, annoyed or obsessed with the numbers only made me more grumpy & exhausted.

I wouldn’t say you were on a huge amount of insulin, the doses are very individual but as an example I have 28u of basal in the morning & 28u of bolus spread between meals (10, 10, 8). They’re not even 100% sure I am T1 right now but I certainly do need the insulin.

A referral to a dietician might help you to figure out how you can safely use diet to bring your numbers down or point you in the direction of carb counting & bolus doses to cover what you plan to eat. My understanding is you can either choose to eat whatever you want & inject insulin to cover it or restrict carbs & keep a flat insulin dose. I’m still a bit foggy on the in’s & outs as I’ve not had my dietician appointment yet myself.

I hope this helps & if you feel frustrated this forum is a good place to come, check out the success stories section.

 

[Jo162]

I was diagnosed 6 weeks ago & it is really hard. Like you I was keen to get control quickly, so I read everything I could & decided to test a low carb diet (20g per meal).

It worked great, my numbers were looking perfect & I was in a target range of 5.3 - 7.8 mmol 90% of the time. Then my life got busy (stress & more physical activity), I lost control & was going low 40% of the time. A slight lowering of insulin & an increase of carbs and this week my lows are reducing & my highs aren’t too high.

My point being the experience of the past 6 weeks is a rollercoaster both emotionally, physically & number wise. Getting upset, annoyed or obsessed with the numbers only made me more grumpy & exhausted.

I wouldn’t say you were on a huge amount of insulin, the doses are very individual but as an example I have 28u of basal in the morning & 28u of bolus spread between meals (10, 10, 8). They’re not even 100% sure I am T1 right now but I certainly do need the insulin.

A referral to a dietician might help you to figure out how you can safely use diet to bring your numbers down or point you in the direction of carb counting & bolus doses to cover what you plan to eat. My understanding is you can either choose to eat whatever you want & inject insulin to cover it or restrict carbs & keep a flat insulin dose. I’m still a bit foggy on the in’s & outs as I’ve not had my dietician appointment yet myself.

I hope this helps & if you feel frustrated this forum is a good place to come, check out the success stories section.

Its been a month i have checked my glucose 190 times so far, i feel like i am walking in a field of landmines. Always the fear of Hypo during the night and not waking up, fear of losing my sight or limbs. I think i will have to work on releasing all the stress of my diagnosis, in a few weeks i will be getting dexcom g6 with a smartwatch which will help with my hypo fear and my constant blood sugar testing and in a few months will try the pump with closed loop hopefully will help keep a more stable BG.

 

[MarkMunday]

... Always the fear of Hypo during the night and not waking up, fear of losing my sight or limbs. I think i will have to work on releasing all the stress of my diagnosis, in a few weeks i will be getting dexcom g6 with a smartwatch which will help with my hypo fear and my constant blood sugar testing and in a few months will try the pump with closed loop hopefully will help keep a more stable BG.

A good starting point is to get rid of the hypo risk. Eating ketogenically does that. It also improves control so complications are no longer a worry. That Troy Stapleton video explains it well.

 

[Jaylee]

Hi @Jo162 ,

Welcome to the forum.

Take the early days of the T1 scene in bite sized chunks.
Get acclimatised with the personal regime in regards to the life you're already used to, before the tweaks.
I wouldn't try cutting a peice of timber untill I've measured up it's application?

No question is too silly. Feel free to ask.

 

[Jo162]

A good starting point is to get rid of the hypo risk. Eating ketogenically does that. It also improves control so complications are no longer a worry. That Troy Stapleton video explains it well.

Very interesting, if i understand correctly by eating keto i could reduce my insulin doses by half and avoid BG spikes. But i still wonder why eating high carb diet spikes BG if you give proper bolus. if my BG is at 6 mmol and my insulin/carb ratio is 1:10 and i eat 100g of carbs so i take 10 units, then my blood sugar should stay at about 6mmol. The only risk of hypo would of taking 10 units but eating 60g of carbs instead of 100g, then BG would fall below 6mmol. Not taking exercise of illness into consideration. Im i wrong, im so lost i usualy check my BG before eating to know where im at then i give bolus for carbs im eating and correction factor if i am a bit high, then check 2 hours later to make sure the bolus i took was ok and because im VERY scared of HYPO. Lowest i fell was 2.4mmol (i took too much insulin for amount of carbs i ate) my hands where shaking like crazy and was feeling a bit off but not that much so i am very scared that it wouldn't wake me during the night.

 

[Jo162]

Welcome to the club @Jo162 .
After 15 years, I’m not exactly an old timer but I have been managing my diabetes for a while with no complications.
One thing to bear in mind with the old timers is they were diagnosed before fast and slow acting insulins existed, before cgms, before insulin pumps, before insulin pens and when checking blood sugars required peeing into a solution and being told high, low or ok.
In other words, you have a much lower chance of complications now than they did and they have made it through.

Diagnosis of a chronic disease is a shock but I look upon mine as a good thing. Without that diagnosis, I wouldn’t be here and, now you have a diagnosis, you have an explanation for your symptoms. You can’t change the past so, in your position, I would stop worrying about the last two years and focus on the future.

When working out how you want to manage your type 1, remember to consider the mental impact. For example, quite a few people are starting to follow a low carb diet. However, I chose to learn how to dose for “normal” carb diet as this is easier for me and allows me to eat what I want which is important for my social and mental health whilst maintaining good blood sugar management.

Thanks really needed that, i have heard that with the new closed loop pumps you get REALLY stable BG even with regular carb diet and they reduce risk of hypo because they cut insulin before you get too low and you get warnings so you can act before hypo . I am really exited to try this with the dexcom g6 with smartwatch so it can wake me during the night if i am about to go into hypo. ( Honestly i do love healthy low carb foods but i like to eat a slice of pizza once in a while too ) The doctor told me its normal i will have spikes sometimes no one is perfect but as long as i keep my A1C under 7%, keep up with ophthalmologist yearly, keep feet healthy, i will have a normal quality life like anyone else.

 

[Wayward Blood]

i am very curious to know how a low carb diet is so good, because you need to inject less insulin? how much is considered a low carb meal 50grams of carbs? i eat of average 70-100grams of carbs per meal

Needing to inject less insulin is a big part of it. I actually think the USA has a better name for hypos: insulin shock. We tend to think of hypos resulting from too little food; it’s better to think of them as an insulin overdose.

Low carbohydrate diets reduce the insulin requirement, which also makes things easier to plan. Higher doses can become unpredictable quite often, especially as food nutrition labels are allowed as much as a 20% margin for error.

As for what constitutes low carbohydrate, that’s a hotly debated topic. Dr Richard Bernstein, seen by many as the authority on low carbohydrate for diabetes, advocates 30g of carbohydrate per day; 6g for breakfast, and 12g for both lunch and dinner. This sounds extreme, but it’s actually very achievable when you base your diet on protein (meat, eggs, fish, nuts etc.) and get the carbohydrate mainly from vegetables.

I hope that helps.

 

[kaylz91]

I haven't read all the comments but I just want to say please don't rush to achieve in target levels etc, this can also cause complications sooner of which I have unfortunately been through less than a month after I was diagnosed, absolutely everyone is aware of the complications that neglecting things can cause but it saddens me after being through it myself that barely anyone is aware of the complications a rapid big drop in hba1c etc can cause xx

 

[porl69]

I wish people would stop pushing the LCHF onto everyone that posts on here. While it may work for 1 person it certainly will not work for the next. Wish ADMIN would do something about it. It is really starting to annoy me now. WE ARE REALLY NOT THE SAME and one size does NOT fit all

I am 49 years in to type 1 and yes I do have a few related problems BUT I am fit and relatively healthy with a good A1C and eat a shed load of carbs every meal.

 

[Jaylee]

Needing to inject less insulin is a big part of it. I actually think the USA has a better name for hypos: insulin shock. We tend to think of hypos resulting from too little food; it’s better to think of them as an insulin overdose.

Hi,

The term "insulin shock" our friends across the pond use is more attributed to the final stages when the body shuts down, moving into coma territory. It was also a form of barbaric psycological tretment used on psychiatric patients to I short "reboot" the brain. (Up until the 1960s. If memory serves correct.) Hence, "insulin shock therapy."

Hypos (low BGs but still relatively cognitive functional enough to self treat.) can be attributed to a lot of things. (& this is if the user gets the dose spot on..)
Unplanned workload increase demanding more energy for the body or brain?
Mistimed bolus not quite working in harmony with digestion & metabolic breakdown of food.. Then there is alcohol.

Hypos can happen with exogenous insulin use regardless of dietary choice.
Now this is just my take on it regarding my experience. Without rattling on too much.

Recommending too much of a change this early in the game is like giving a provisional driving licence to a new driver & suggest they rally on sheet ice...

 

[becca59]

I wish people would stop pushing the LCHF onto everyone that posts on here. While it may work for 1 person it certainly will not work for the next. Wish ADMIN would do something about it. It is really starting to annoy me now. WE ARE REALLY NOT THE SAME and one size does NOT fit all

I am 49 years in to type 1 and yes I do have a few related problems BUT I am fit and relatively healthy with a good A1C and eat a shed load of carbs every meal.

Agree! I find managing very low cab almost impossible to manage. The rise over a long period of time creates the need for 2-3 injections to keep it under control. Sometimes hours after I’ve eaten. Carbs seem to sort that out. Less injections and more in range levels. It may work better with a pump.

 

[Wayward Blood]

I wish people would stop pushing the LCHF onto everyone that posts on here. While it may work for 1 person it certainly will not work for the next. Wish ADMIN would do something about it. It is really starting to annoy me now. WE ARE REALLY NOT THE SAME and one size does NOT fit all

I am 49 years in to type 1 and yes I do have a few related problems BUT I am fit and relatively healthy with a good A1C and eat a shed load of carbs every meal.

After reading your post, I reviewed what I had written about low carbohydrate diets above. I have no intention of offending anyone, and clearly you disagree with what I’ve put.

However, I can see nothing I’ve typed that is incorrect. People have to make up their own minds about their control, but I won’t stop giving the information about low carbohydrate so they’re equipped to make that choice. There are plenty of high carbohydrate resources (e.g. DAFNE), so those interested have plenty to go on to make an informed decision.

I was diagnosed as Type 1 in 1990 and ate a high carbohydrate diet until 2014. In that time I had many, many medical interventions for severe hypos. I’ve ended up shorter than the rest of my family. My hands are small for a man, which as a professional pianist is a drawback. In 2013 retinopathy reared its head. I constantly itched growing up. I had psoriasis bad enough that a hairdresser once told me she couldn’t cut my hair until I got treatment.

And then I discovered low carbohydrate. I was initially desperate for it to fail, because I loved things like pizza. But it didn’t. My blood sugars became easier to manage. I became far less hungry. I’ve not needed an ambulance for low blood sugars since I changed my eating habits. More than 7 years after the retinopathy diagnosis, nothing has progressed.

I have a simple question: after everything I’ve experienced, when I see someone looking for answers about finding better control, why WOULDN’T I make the case for a low carbohydrate diet?

 

[Jaylee]

After reading your post, I reviewed what I had written about low carbohydrate diets above. I have no intention of offending anyone, and clearly you disagree with what I’ve put.

However, I can see nothing I’ve typed that is incorrect. People have to make up their own minds about their control, but I won’t stop giving the information about low carbohydrate so they’re equipped to make that choice. There are plenty of high carbohydrate resources (e.g. DAFNE), so those interested have plenty to go on to make an informed decision.

I was diagnosed as Type 1 in 1990 and ate a high carbohydrate diet until 2014. In that time I had many, many medical interventions for severe hypos. I’ve ended up shorter than the rest of my family. My hands are small for a man, which as a professional pianist is a drawback. In 2013 retinopathy reared its head. I constantly itched growing up. I had psoriasis bad enough that a hairdresser once told me she couldn’t cut my hair until I got treatment.

And then I discovered low carbohydrate. I was initially desperate for it to fail, because I loved things like pizza. But it didn’t. My blood sugars became easier to manage. I became far less hungry. I’ve not needed an ambulance for low blood sugars since I changed my eating habits. More than 7 years after the retinopathy diagnosis, nothing has progressed.

I have a simple question: after everything I’ve experienced, when I see someone looking for answers about finding better control, why WOULDN’T I make the case for a low carbohydrate diet?

From one LCer & possibly "muso" to another. We are at risk of derailing the topic..