24 Year Old, Type 1 as of 4/02/2016

[ElkBond]

Hello All,

I was enjoying my morning at work when the results of my blood tests came back following a routine GP visit after some random weight loss. Needless to say when I heard the results the world came down a bit like inception.

I spent the weekend in hospital starting out with a blood sugar of around 30 and had to wait for my ketones to come down before I could be discharged

Once I was out I had a mopey day or two at home but once I started to accept it and carry on I have not been overly bothered by it - in fact the only thing I hate is the finger pricking! I suffer from needle phobia also but the constant jabbing is starting to wear the phobia out. The needle goes in almost first time now (there has been a lot of hesitation from time to time).

I am now thinking of purchasing a Dexcom glucose monitor unit, if anyone who has one can give me some advice or has some stories about a CGM please let me know! I have done a lot of research into it and I firmly believe it will help me carry on my life as close to it used to be as possible.

People said the diet change will be the hardest, but there's next to no change for myself. I am a tea and coffee person, both without sugar and I hardly drink alcohol. My food is always cooked from scratch and I rarely eat junk food.

I am already back to work, had a week off. Only one minor hypo which is to be expected while we are still messing around with my doses. How many other problems can be solved with a small bag of jelly babies?! If only life was always this simple!!

So there we have it, just sharing my experience, would be nice to hear from other people who have found out they have type 1 out of the blue and how their are dealing with it all.

EB.

 

[Liam1955]

@ElkBond - Hello and Welcome to the Forum. I will tag @daisy1 who will provide you with some basic information that all newbies receive. Have a read and ask any questions.

 

[noblehead]

Welcome to the forum @ElkBond

It sounds like your doing fine, I'm going to tag @CarbsRok as I'm sure she uses the Dexcom. Best wishes.

 

[donnellysdogs]

Welcome to the forum...(don't really like to see another T1 joining our exclusive club).. But you've come to the right place.

I can't help ref dexcom but others will be along who use that CGM.

You sound as if you are handling things really well. Keep it up.

As a side issue-if you drive, make sure you inform dvla and insurance. For your free prescriptions make sure the GP has signed and sent off your exemption form...

Foods - T1's are told nowadays that a special diet isn't needed. Its brilliant to make your own foods. A lot of us find that lower carbs are easier but the NHS persons don't really talk about this..

Are you on a basal/bolus regime or a mixed insulin?

Stabbing with fingers- just make sure you have the stabber set at the minimal depth for it to go in... Your skin on fingers will toughen up so you feel the stabs less!!-lol

 

[ElkBond]

Thanks for the replies and the welcome to the club

I am on the Lantus background insulin at night and Novarapid before meals.

I haven't driven since my diagnosis, I will let them know in the next few days, doses are nearly there, starting to stay in single digits.

 

[daisy1]

@ElkBond

Hello and welcome to the forum Here is the information we give to new members and I hope you will find it useful. Ask all the questions you can think of and someone will be able to help.

BASIC INFORMATION FOR NEWLY DIAGNOSED DIABETICS

Diabetes is the general term to describe people who have blood that is sweeter than normal. A number of different types of diabetes exist.

A diagnosis of diabetes tends to be a big shock for most of us. It’s far from the end of the world though and on this forum you’ll find over 150,000 people who are demonstrating this.

On the forum we have found that with the number of new people being diagnosed with diabetes each day, sometimes the NHS is not being able to give all the advice it would perhaps like to deliver - particularly with regards to people with type 2 diabetes.

The role of carbohydrate

Carbohydrates are a factor in diabetes because they ultimately break down into sugar (glucose) within our blood. We then need enough insulin to either convert the blood sugar into energy for our body, or to store the blood sugar as body fat.

If the amount of carbohydrate we take in is more than our body’s own (or injected) insulin can cope with, then our blood sugar will rise.

The bad news

Research indicates that raised blood sugar levels over a period of years can lead to organ damage, commonly referred to as diabetic complications.

The good news

People on the forum here have shown that there is plenty of opportunity to keep blood sugar levels from going too high. It’s a daily task but it’s within our reach and it’s well worth the effort.

Controlling your carbs

The info below is primarily aimed at people with type 2 diabetes, however, it may also be of benefit for other types of diabetes as well.
There are two approaches to controlling your carbs:

• Reduce your carbohydrate intake
• Choose ‘better’ carbohydrates

Reduce your carbohydrates

A large number of people on this forum have chosen to reduce the amount of carbohydrates they eat as they have found this to be an effective way of improving (lowering) their blood sugar levels.

The carbohydrates which tend to have the most pronounced effect on blood sugar levels tend to be starchy carbohydrates such as rice, pasta, bread, potatoes and similar root vegetables, flour based products (pastry, cakes, biscuits, battered food etc) and certain fruits.

Choosing better carbohydrates

Another option is to replace ‘white carbohydrates’ (such as white bread, white rice, white flour etc) with whole grain varieties. The idea behind having whole grain varieties is that the carbohydrates get broken down slower than the white varieties –and these are said to have a lower glycaemic index.
http://www.diabetes.co.uk/food/diabetes-and-whole-grains.html

The low glycaemic index diet is often favoured by healthcare professionals but some people with diabetes find that low GI does not help their blood sugar enough and may wish to cut out these foods altogether.

Read more on carbohydrates and diabetes

LOW CARB PROGRAM:
http://www.diabetes.co.uk/low carb program


Eating what works for you

Different people respond differently to different types of food. What works for one person may not work so well for another. The best way to see which foods are working for you is to test your blood sugar with a glucose meter.

To be able to see what effect a particular type of food or meal has on your blood sugar is to do a test before the meal and then test after the meal. A test 2 hours after the meal gives a good idea of how your body has reacted to the meal.

The blood sugar ranges recommended by NICE are as follows:

Blood glucose ranges for type 2 diabetes

• Before meals: 4 to 7 mmol/l
• 2 hours after meals: under 8.5 mmol/l

Blood glucose ranges for type 1 diabetes (adults)

• Before meals: 4 to 7 mmol/l
• 2 hours after meals: under 9 mmol/l

Blood glucose ranges for type 1 diabetes (children)

• Before meals: 4 to 8 mmol/l
• 2 hours after meals: under 10 mmol/l

However, those that are able to, may wish to keep blood sugar levels below the NICE after meal targets.

Access to blood glucose test strips

The NICE guidelines suggest that people newly diagnosed with type 2 diabetes should be offered:

• structured education to every person and/or their carer at and around the time of diagnosis, with annual reinforcement and review
• self-monitoring of plasma glucose to a person newly diagnosed with type 2 diabetes only as an integral part of his or her self-management education

Therefore both structured education and self-monitoring of blood glucose should be offered to people with type 2 diabetes. Read more on getting access to bloodglucose testing supplies.

You may also be interested to read questions to ask at a diabetic clinic

Note: This post has been edited from Sue/Ken's post to include up to date information.

 

[paulliljeros]

Hi @ElkBond , and welcome. After 30 years of terrible control, I purchased a Dexcom G4 in November last year after losing my will to the frustration of waiting for the Libre. I am so glad I took this choice, and have not looked back. I was initially really frustrated by the costs of the starter kit in the UK (£1335), so eventually bought one from France for approx. £850, but you'll need a French bank account, and address ,and a fair amount of patience! Also, if you do go down the route of purchasing from Europe, be aware that France, for example, measure in mg/dl, so you'll spend a lot of time converting (dividing and multiplying by 18), so in your early stages, I would suggest this is not an added complexity you should deal with (yet!). I purchase my sensors and transmitters from Germany (diashop.de) who are brilliant, and again, much cheaper than Advanced Therapeutics in the UK. Another option you can consider is purchasing an xDrip, which negates the need for the receiver, but if you can afford it, considering everything else you have to get your head around at this stage, I would recommend you just buy a starter kit, and keep it simple!
The options around the xDrip of very interesting, and worth investigating. I'll happily share the links I have been using, and have the software on my android phone which I find more accurate than the receiver. Unfortunately, I work in an environment where I am not allowed a mobile at my desk, so I still carry the Dexcom receiver, and use this to keep the log for downloading to the PC. I have also bought a smartwatch, for use when ski-ing, meaning I can check the data, without getting anything out of my pockets.
The dexcom will prove invaluable, so long as you appreciate, it gives you approximate BG values, but gives you accurate trends ... where was your bg, where is it now, and where is it going - add to that your knowledge of what you've eaten or injected, and seriously the graphical picture is priceless! Before you buy, check out the book "Think like a pancreas" as it will help you understand the value the CGM will bring, and also consider "Sugar Surfing", which is another eye opening book I found.
Don't forget, you still need to do at least 2 finger pricks per day to calibrate and to get the best accuracy, but it is a well worth it. I went from often not testing for months at a time, to being in near panic when I know the receiver will be resetting for just 2 hours. Additionally, I have found I get a whole new type of respect from doctors, because I now arrive at clinic with BG profiles they (and I) could only dream of!
If you have any questions, I'll be happy to answer, and share my experience of the last 4 months. Pm me if you like.
Good luck!

 

[ElkBond]

I take it the units can be changed to our mmols.
I am thinking of the g5, although the transmitter price is outlandish the added benefit of being able to have all data sync with my phone may sway it for me as I log all meals (myfitnesspal) and current glucose on it anyway.

Sensor insertion, painful? How long have you squeezed out of it past the 7 days? Any tips on prolonging the sensor?

 

[paulliljeros]

I take it the units can be changed to our mmols.
I am thinking of the g5, although the transmitter price is outlandish the added benefit of being able to have all data sync with my phone may sway it for me as I log all meals (myfitnesspal) and current glucose on it anyway.

Sensor insertion, painful? How long have you squeezed out of it past the 7 days? Any tips on prolonging the sensor?

If you have the mg/dl unit receiver, it is possible to set the units within the Dexcom Studio software, to view in mmols on screen, but not on the receiver itself. The issue with the G5 is the sensors expire after 7 days (like the G4 sensors) but cannot be restarted. The G4 sensors CAN be restarted, so I regularly get mine to last between 3 and 4 weeks (max so far is 31 days, and whilst it would have lasted longer, I felt I'd had a good run so changed for the sake of it), thereby reducing the costs significantly. I am not aware of anyone who has yet been able to restart the G5 sensors, and I suspect this is not something that will change.
I always insert the sensors on the back of my arm, and for simplicity, get my girlfriend to do it. It is almost always painless, and never painful.
I have purchased Skin Tac liquid (not the pads) and 1m x 10cm flexifix clear tape. I have a specific way of securing the sensor now, and believe a secure fit is the best way to extend the life. Once the sensor comes lose, it simply starts to die. The flexifix stays good for about 2 weeks, but then I just cut away anything that's lose, and patch it up. I'll post a few photos of the way I fix the sensors as soon as I get a chance but it will be a few weeks I'm afraid.

CORRECTION: As pointed out by @TorqPenderloin below, the G5 sensors CAN be restarted - Thanks for correction.

 

[paulliljeros]

A few options to consider are that whilst I assume you are not on an insulin pump, the Animas Vibe pump integrates very neatly with the Dexcom, removing the need for the receiver also. Additionally, the £55 xDrip will allow integration with mobile devices, but I only know it definitely works with Android. If you use IOS, you'll need to check before hand, as it might not, but going off memory, I think I have seen something about it working with apple watches. Do a quick google for xDrip, #wearenotwaiting, github and nightscout. These are amazing resources, and although they are tailored a bit more for parents monitoring children, this is the building blocks for the xDrip.

 

[TorqPenderloin]

Just a quick note, the sensors for the G5 system CAN be restarted and are literally the same as those used with the G4 system (the old packaging even said G4 on them).

It is the TRANSMITTER that cannot be restarted on the G5 system. At 90 days, you'll get an alert that says your battery is low, over the next 2-3 weeks you'll get a message that says something like "this is your last sensor, replace transmitter." At that point, the transmitter will still function (although I'm not sure for how long) but you'll lose partial functionality: the graph will still update but the current glucose reading will not be visible.

 

[ElkBond]

Ahh thanks for that, I heard the sensor in the G5 can be turned on and off again, I got a little confused.

Sensor placement and injection sites: where is best for the g5 sensor and how close can it be to an injection point? At the moment my fast acting is going in the abdomen.

 

[teacher123]

Hey and welcome.

Have you thought about the Freestyle Libre?

 

[ElkBond]

I did look into this, fantastic idea and well implemented but a Dexcom unit edged ahead for me due to the fact it can send me alerts if it reads a low or high levels as well as being a continuous monitor vs a manual scan. I have now bought a G5 and await delivery!

 

[Sulky]

Been type 1 for two years now and my levels are still **** .my hospital have been ****.have just managed to get on a carb counting in March.anyone else been on one and do they help.

 

[teacher123]

Great news @ElkBond - I'm hoping to purchase the Libre. Much more manageable money wise!

 

[Hannah3003]

Hello! I'm 22 and was diagnosed as a T1 on 15th January 2016. It was a massive blow but I'm managing. Waiting for my new driving license to be sent out. I've been back at work 2 and a half weeks now, had a minor hypo today (first one at work) but luckily I work in a hospital so nurses are always around

 

[ElkBond]

Working in a hospital is ideal! I have only had one hypo at work which was minor and brought on by something which may be resistant starch, has anyone else heard of this?

I reheated some mash which apparently creates this starch which isnt as easily broken down, and using a full dose brought on a hypo.

My levels are still higher than I would like but its still only week 2 since diagnosis.

@Sulky I use myfitnesspal app as a easy way of carb counting, it syncs with Apple Health too!

 

[ElkBond]

Sorry missed out @teacher123!

What are the running costs of the libre? The G5 is ridiculous, in fact it took some willpower to go ahead but my thinking was that it will help me in the long run.

 

[Mal1978]

Hello All,

I was enjoying my morning at work when the results of my blood tests came back following a routine GP visit after some random weight loss. Needless to say when I heard the results the world came down a bit like inception.

I spent the weekend in hospital starting out with a blood sugar of around 30 and had to wait for my ketones to come down before I could be discharged

Once I was out I had a mopey day or two at home but once I started to accept it and carry on I have not been overly bothered by it - in fact the only thing I hate is the finger pricking! I suffer from needle phobia also but the constant jabbing is starting to wear the phobia out. The needle goes in almost first time now (there has been a lot of hesitation from time to time).

I am now thinking of purchasing a Dexcom glucose monitor unit, if anyone who has one can give me some advice or has some stories about a CGM please let me know! I have done a lot of research into it and I firmly believe it will help me carry on my life as close to it used to be as possible.

People said the diet change will be the hardest, but there's next to no change for myself. I am a tea and coffee person, both without sugar and I hardly drink alcohol. My food is always cooked from scratch and I rarely eat junk food.

I am already back to work, had a week off. Only one minor hypo which is to be expected while we are still messing around with my doses. How many other problems can be solved with a small bag of jelly babies?! If only life was always this simple!!

So there we have it, just sharing my experience, would be nice to hear from other people who have found out they have type 1 out of the blue and how their are dealing with it all.

EB.

I've just recently found out I am type 1 and weightloss was what started it off for me as well as extreme thirst etc (my bloods were 33 when I got to hospital) it's been a tough two weeks and I was and still am pretty down on it but I guess that will change eventually, as for diet I've started eating pretty healthy but as I'm a pretty big eater I'm carb counting and adjusting my insulin accordingly, I've had a couple of hypos which have knocked me sideways and the short term memory loss is a b*tch but life goes on.