Type 1 and struggling

[chambers0508]

Hi all, I was diagnosed 5 days ago with type 1 diabetes. I had it gestationally when pregnant with my daughter 7 months ago but have only had it confirmed as type 1 on Monday. I just feel so deflated and I’m honestly terrified. My sugar levels are ranging between 15-24mmol despite injecting insulin 4 times a day. I don’t yet carb count as I haven’t had a dietician appointment yet. I just want to know when things will start to slow down and I will start to feel better, how long did it take you to get your sugars under control?
I was admitted to hospital Monday with sugars above 35mmol and ketones of 7.9, so I’m in a much better position now but I still feel defeated.

 

[Flowercity]

Hi all, I was diagnosed 5 days ago with type 1 diabetes. I had it gestationally when pregnant with my daughter 7 months ago but have only had it confirmed as type 1 on Monday. I just feel so deflated and I’m honestly terrified. My sugar levels are ranging between 15-24mmol despite injecting insulin 4 times a day. I don’t yet carb count as I haven’t had a dietician appointment yet. I just want to know when things will start to slow down and I will start to feel better, how long did it take you to get your sugars under control?
I was admitted to hospital Monday with sugars above 35mmol and ketones of 7.9, so I’m in a much better position now but I still feel defeated.

Welcome to the forum. I also had gestational diabetes and it stayed after a few months. I just want to encourage you that it does take time to get a good routine down. I also started on 4 shots a day. Is there a good nurses line that you can consult between apts with the Dr? I know that was helpful for me .This forum is a wonderful place for support and ideas. Good job reaching out and please take care.

 

[Zhnyaka]

How do you inject insulin if you don't count carbohydrates? After all, we introduce a dose of bolus in accordance with the amount of carbohydrates eaten. Perhaps you just have an incorrect dose of insulin. Did the doctors discharge you from the hospital without picking up the dose? Usually, insulin is started with a minimum dose, and then this dose is increased until the patient feels well, but for the first time it is done by doctors, not by the patient

 

[plantae]

How do you inject insulin if you don't count carbohydrates? After all, we introduce a dose of bolus in accordance with the amount of carbohydrates eaten.

I am being treated as if I was type 1 (because I basically am, just with a different cause) and do not count carbs as part of my insulin regime. I take fixed doses of rapid acting bolus 15 minutes prior to each meal and a long lasting insulin once at night

 

[Zhnyaka]

I am being treated as if I was type 1 (because I basically am, just with a different cause) and do not count carbs as part of my insulin regime. I take fixed doses of rapid acting bolus 15 minutes prior to each meal and a long lasting insulin once at night

so you always eat the same thing? It seems to me that your doctors decided to protect you from hypo by prescribing a dose of insulin less than required. I think everything will get better as soon as they teach you to count it.

 

[Daibell]

Hi. I think it's irresponsible to be placed on Basal/Bolus without guidance on carb-counting. It happens a lot in the NHS but fortunately my DN gave me the right guidance from Day 1. It's not the dieticians job to advise on carb-counting - it's up to the GP or nurse so you may need to insist you see someone who looks after diabetes patients. Basically it's very simple. You just adjust your Bolus dose according to the carbs in the meal you are about to eat. The important thing is to avoid hypos so never inject too much without monitoring with your meter and moving the Bolus up or down in small steps each day and measuring the effect with your meter. Many find the ratio of Bolus to Carbs varies during the day so be aware of that.

 

[plantae]

so you always eat the same thing? It seems to me that your doctors decided to protect you from hypo by prescribing a dose of insulin less than required. I think everything will get better as soon as they teach you to count it.

No I don't always eat the same thing, and my BSL isn't always the same before I eat. And it doesn't make sense. But my bolus (novorapid) are fixed amounts and so is my basal (lantus).

I do count carbs but it's unrelated to my insulin doses (I've recorded just about everything I've eaten for 5 years; I was diagnosed with diabetes in October last year). I wish they'd let me change my bolus doses on my carb intake as well. It can't be related to hypos because I'm convinced that every hypo I've had (and I've had a lot) is probably because I've had too much bolus

 

[Zhnyaka]

No I don't always eat the same thing, and my BSL isn't always the same before I eat. And it doesn't make sense. But my bolus (novorapid) are fixed amounts and so is my basal (lantus).

I do count carbs but it's unrelated to my insulin doses (I've recorded just about everything I've eaten for 5 years; I was diagnosed with diabetes in October last year). I wish they'd let me change my bolus doses on my carb intake as well. It can't be related to hypos because I'm convinced that every hypo I've had (and I've had a lot) is probably because I've had too much bolus

Hmm, if you know how to count carbs and know what to do with hypo, then the actions of your doctors seem strange to me. They could just calculate your dose for 10g of carbs and tell you how to adjust it depending on bgl before eating. The most difficult thing in this is counting carbs... and if you have a constantly high bgl, then the problem may be in the dosage of bazal (usually it is looked at by whether bgl increases overnight or not)

 

[plantae]

Hmm, if you know how to count carbs and know what to do with hypo, then the actions of your doctors seem strange to me. They could just calculate your dose for 10g of carbs and tell you how to adjust it depending on bgl before eating. The most difficult thing in this is counting carbs... and if you have a constantly high bgl, then the problem may be in the dosage of bazal (usually it is looked at by whether bgl increases overnight or not)

Yeah I had been having constant lows and they've reduced my basal by 2 units, which I admit has helped. But not counting carbs (which I do already) and basing my bolus on them doesn't make sense to me. I've asked at least 3 times. I count by grams and can tell you how many grams of carbs I've eaten for for every meal in that time (some skipped days because of hospital etc, but essentially every day). But, the nurse just changes the subject as soon as I bring the subject up

Edit: Yes, it's strange

 

[Zhnyaka]

Yes, it's strange

this is even more strange because it is very easy to do.
Moderators, am I allowed to write on this forum how to calculate the dose of insulin for 10g of carbs?

 

[Deleted member 527103]

@Zhnyaka it is common to start someone with Type 1 on fixed doses. Five days after a diagnosis, few people have been told about carb counting let alone mastered it.
Doctors (or nurses) need some time to determine how their body reacts to insulin to work out what their insulin to carb ratios are. So, I would strongly discourage offering how to calculate insulin dose for 10g carbs. We do not know what @chambers0508 insulin to carb ratio is an should not make any assumptions.

@chambers0508 sorry to read of your diagnosis, it is a shock when first diagnosed and having Dr Google to advise can be dangerous and scary. Your levels are currently high but I hope you are in regular contact with your nurse who will advise further on your dose to bring your levels down slowly. It can be dangerous to lower your levels too fast.
I recommend keeping a diary of what you eat and how your blood sugar levels are affected to aid with the dosing.

 

[Jaylee]

this is even more strange because it is very easy to do.
Moderators, am I allowed to write on this forum how to calculate the dose of insulin for 10g of carbs?

Hi,

There are clear forum rules regarding advice on altering or changing medication dosage.

Community Ethos & Forum Rules

Welcome to the Diabetes.co.uk Forum - the world's largest diabetes community. This is a compassionate, inclusive environment and below are the Forum Ethos and Rules. Please take a few minutes to have a read! Forum Mission Statement/Objective The Diabetes Forum helps people improve their...

www.diabetes.co.uk

 

[Zhnyaka]

Hi,

There are clear forum rules regarding advice on altering or changing medication dosage.

Community Ethos & Forum Rules

Welcome to the Diabetes.co.uk Forum - the world's largest diabetes community. This is a compassionate, inclusive environment and below are the Forum Ethos and Rules. Please take a few minutes to have a read! Forum Mission Statement/Objective The Diabetes Forum helps people improve their...

www.diabetes.co.uk

thanks. I thought it wasn't according to the rules

 

[Zhnyaka]

@Zhnyaka it is common to start someone with Type 1 on fixed doses.

do doctors really let people go home with a drug like insulin without teaching them how to use it?
I remember that I was forced to learn how to do it before they let me go home.

 

[Antje77]

do doctors really let people go home with a drug like insulin without teaching them how to use it?
I remember that I was forced to learn how to do it before they let me go home.

It takes weeks to come close to finding the correct dose.
Most are sent home with the instruction to inject a certain amount and keep a food and BG diary. Doses are then tweaked based on this information, and eventually insulin to carbs ratios can be found.

You need to start somewhere, and no-one knows how much insulin they will need before trying.
I received my insulin in the GP's practice from a practice nurse, had to show I understood how to handle the insulin pen by injecting in a sponge and left with instructions on how much to take. Took about 30 minutes.
After that it was regular phonecalls on how to adjust my doses.

 

[Zhnyaka]

It takes weeks to come close to finding the correct dose.
Most are sent home with the instruction to inject a certain amount and keep a food and BG diary. Doses are then tweaked based on this information, and eventually insulin to carbs ratios can be found.

You need to start somewhere, and no-one knows how much insulin they will need before trying.
I received my insulin in the GP's practice from a practice nurse, had to show I understood how to handle the insulin pen by injecting in a sponge and left with instructions on how much to take. Took about 30 minutes.
After that it was regular phonecalls on how to adjust my doses.

they kept me in the hospital for a month and a half until I learned to count carbs and give injections. Moreover, my doctor demanded that I be able to do it, and not just my parents, although I had to learn the multiplication table for this. Sometimes I think my doctor was a strange but wonderful person

 

[Zhnyaka]

I received my insulin in the GP's practice from a practice nurse, had to show I understood how to handle the insulin pen by injecting in a sponge and left with instructions on how much to take. Took about 30 minutes.

Wait.. in sponge?! but you might be able to do it with a sponge, but be scared when you have to inject yourself. It's scary! And if you decided not to do anything at all, thinking that these doctors are fools? Or if I would lie in the food diary?

 

[Jaylee]

do doctors really let people go home with a drug like insulin without teaching them how to use it?
I remember that I was forced to learn how to do it before they let me go home.

I was in hospital for a week as a kid & practiced on an orange. (Glass syringes back then. When I got home (the following week.)
My mum injected & I got to push the plunger down. After a couple of days of this. I was banging it in myself.

I was put on MDI whilst starting college I’d moved out by then. That was fun. Lodging in Surrey, doing some very physical training activity. Just…. Sent out with some reusable pens & a meter. Along with a leaflet.. But they must have guessed I already knew how to handle a “tent peg.”

 

[Rokaab]

they kept me in the hospital for a month and a half until I learned to count carbs and give injections. Moreover, my doctor demanded that I be able to do it, and not just my parents, although I had to learn the multiplication table for this. Sometimes I think my doctor was a strange but wonderful person

I suspect in most adult cases most hospitals wouldn't even think about keeping people in for that long for various reasons including finding any free beds (which afaik are very hard to find for anything) - may be different for kids (I dont remember what it was like when I was diagnosed as I was only two, also MDI didnt exist back then anyway)

 

[Zhnyaka]

God... I think I'm starting to realize that my doctor was a saint. I remember that she always had problems because she kept newly diagnosed diabetics in the hospital for so long. I also remember that when we ate, she looked at us sternly and forced us to eat another piece of bread if we didn't finish the meal, she took away my food if she found it in my nightstand and she really wasn't too lazy to teach me to count (not only carbs, but counting in principle). She taught me how to count carbs correctly in order to eat sweets and fast food and told (showed) complications. I remember that she said that I could eat whatever I wanted if I learned how to dose insulin correctly and if I counted the dose for a yummy treat correctly, she allowed me to eat it. Oh my God, I really thought that's what doctors do to all newly diagnosed diabetics everywhere. What a pity that she died and I can't thank her!