Newly Diagnosed Type 1

[BeckyBoo2824]

Hello,
I was taken into hospital at the request of my GP on tuesday with high blood sugar and high ketone levels. Once at hospital I was then diagnosed and treated for DKA, my ketone levels were 7.7 which mean't nothing at the time but now I'm led to understand it was dangerously high.
Since then, they diagnosed me with type 1 diabetes and started me on Insulin injections four times a day.
I feel a bit shell shocked to be honest- I'm 28 so this wasn't something I was expecting at all. At times I'm feeling very emotional about it all. I feel as though I have a huge mountain to climb to learn about Diabetes.

I don't even really know where to start- I've now been discharged from hospital and am awaiting my first diabetic nurse appointment.
What happens during your first appointment?
I also have an appointment to see a dietitian- they visited me whilst I was in hospital but said I would have a further appointment when I was discharged. What happens in that appointment?

Finally, I'm also aware that I now need to inform the DVLA of my condition- once I have informed them can I drive immediately or do I have to wait for them to contact me to say it is ok?

I feel so confused by this all- I wish they could explain to me why I had developed type one Diabetes.

Thanks so much for reading

 

[Rachox]

Hi BeckyBoo, welcome to the Forum and sorry to hear of your diagnosis, any life long diagnosis comes as a shock. I’m a type 2 so I’ll leave the specific questions up to the type 1s as the treatment is different. As this is your first post I’ll tag in @daisy1 for her welcome info post. A lot of it is about Type 2 but there is info for Type 1 as well. Ask any questions you have there’ll be people along soon to help.

 

[KK123]

Hello,
I was taken into hospital at the request of my GP on tuesday with high blood sugar and high ketone levels. Once at hospital I was then diagnosed and treated for DKA, my ketone levels were 7.7 which mean't nothing at the time but now I'm led to understand it was dangerously high.
Since then, they diagnosed me with type 1 diabetes and started me on Insulin injections four times a day.
I feel a bit shell shocked to be honest- I'm 28 so this wasn't something I was expecting at all. At times I'm feeling very emotional about it all. I feel as though I have a huge mountain to climb to learn about Diabetes.

I don't even really know where to start- I've now been discharged from hospital and am awaiting my first diabetic nurse appointment.
What happens during your first appointment?
I also have an appointment to see a dietitian- they visited me whilst I was in hospital but said I would have a further appointment when I was discharged. What happens in that appointment?

Finally, I'm also aware that I now need to inform the DVLA of my condition- once I have informed them can I drive immediately or do I have to wait for them to contact me to say it is ok?

I feel so confused by this all- I wish they could explain to me why I had developed type one Diabetes.

Thanks so much for reading

Hi Becky,

I was diagnosed 10 months ago as type 1 at the grand old age of 55. At my first DN appointment (and bear in mind there will be a whole bunch of people at the Diabetes clinic so it does feel like a cattle market, ie, rushed), they will check your weight and blood pressure. Then you will see the Consultant (probably). He/she will discuss your diagnosis and in my case, because it was inconclusive as to what type at that time), they may arrange for various blood tests. When you see the Dietician they will discuss what you eat and will most likely tell you to carry on eating it whilst the DN adjusts your insulin in the first few months. That's it. You will get no explanation as to why you developed type 1 as there isn't one, only guesses. You can drive immediately but you will need to check your glucose immediately before driving and each two hours after. If it's under 4, don't drive, if it's between 4 and 5, have a carby snack before driving. Others will be along to add their experiences. I think you will find that you can get more information on this forum than at your DN clinic, they are very busy and seem to spout a 'one size fits all' philosophy. x

 

[Martin2018]

The DN may also check your feet pulses with a ultrasound type device, so make sure you washed them , you may also need to tell DVLA of your diagnosis and your treatment but other Type 1s will be able to tell you more about this..
You will also probably be referred to eye clinic to check for any signs of diabetic retinopathy and given the option for referral to attend a course for newly diagnosed diabetes such as Desmond.
This may all sound a bit daunting but using this forum will help and pleased you have made the first important step of looking for information ..

 

[Jenny15]

Hello,
I was taken into hospital at the request of my GP on tuesday with high blood sugar and high ketone levels. Once at hospital I was then diagnosed and treated for DKA, my ketone levels were 7.7 which mean't nothing at the time but now I'm led to understand it was dangerously high.
Since then, they diagnosed me with type 1 diabetes and started me on Insulin injections four times a day.
I feel a bit shell shocked to be honest- I'm 28 so this wasn't something I was expecting at all. At times I'm feeling very emotional about it all. I feel as though I have a huge mountain to climb to learn about Diabetes.

I don't even really know where to start- I've now been discharged from hospital and am awaiting my first diabetic nurse appointment.
What happens during your first appointment?
I also have an appointment to see a dietitian- they visited me whilst I was in hospital but said I would have a further appointment when I was discharged. What happens in that appointment?

Finally, I'm also aware that I now need to inform the DVLA of my condition- once I have informed them can I drive immediately or do I have to wait for them to contact me to say it is ok?

I feel so confused by this all- I wish they could explain to me why I had developed type one Diabetes.

Thanks so much for reading

Hi @BeckyBoo2824 sorry to hear about your sudden and unexpected diagnosis. I can only imagine what a shock it must be for you. I'm glad you found this forum because there are lots of Type 1s here who can offer you support and info.

Please be careful what information you read from forum members, especially those that do not have T1 (like me) or who haven't had their type of diabetes long. You are the person responsible for your legal liability as a driver so please only trust info from an official source. Treat informal info as something to be later checked out by yourself.

I personally would not get behind the wheel until I was satisfied I was ready to do so safely, and could legally defend myself if another driver caused a crash involving me. You will quickly learn how you can manage these risks by using a BG testing meter that has the right time and date settings, and doing your tests within the required time periods.

It always pays to get something in writing about your permission to drive. That way if it is later called into question that you notified the DVLA in the correct way, you can prove it.

Do call your assigned diabetic nurse when you have questions only they can answer, and make full use of your regular appointments with them. Write a list of things you want to ask before you go. Take notes as well. It's OK to ask questions - it's better than making a mistake that may cause issues for you and/or them.

I have been diagnosed with a major medical condition a few times in my life. I felt shocked and very upset, too. I found that starting a small notebook for writing down key bits of info the nurses and doctors told me was helpful. After some time I felt familiar enough with managing the condition that I didn't need to use the notebook anymore.

You may be able to access counselling or a group for a degree of emotional support for the adjustment to your new way of life where you live, at low or no cost. I don't know what's available in the UK but some areas might have organisations that offer support.

 

[Jenny15]

Also, if you have a family member or friend who can come with you to at least the first clinic appointment, that can help. Moral support, and a second set of eyes and ears to take in all the info and maybe prompt you to ask something you need to find out.

I sometimes wish it were possible for a forum member to come to an appointment with a new diagnosed person but alas...

 

[kitedoc]

Type 1 Diabetic -51 years on insulin in Oz.
Hello BeckBoo - welcome to the club. I am sure you did not volunteer for this, none of us did either, but here we are.
1) My doctor welcomes all new TID with a recommendation that they develop a good normal age retirement plan. The outlook is that good these days.
2) Imagine that you are travelling in a canoe on the river of life. We each, as TID, try to stay midstream. To one side are long sections of turbulent water with rocks somewhere downstream (hypers - high sugars) and on the other side are waterfalls and drops ( hypos- low blood sugars). What we eat, how we exercise, the insulin we inject and the checks we make of our progress (glucose monitoring) all help keep us midstream much of the time. Planning ahead and finding how to 'read' the river, learning how to balance diet, insulin and exercise, and the taking of sight and depth readings (blood tests ect) all help us along the way. And we try to remember to wear a flotation vest.( e.g. carrying sweet lollies etc to treat hypos)
3) Your health team of nurses, doctors, dieticians etc are your trainers/advisors, Ask them questions, no question is too simple or difficult. Request answers until they make sense to you.
4) this forum, fellow patients at clinics, good friends are fellow paddlers, flotation supports( um, holder-upperers) and guides at times. They have had the experience of capsizing, grazing rocks and tumbling over falls etc in the river. And experience of other things in life. They have also felt the joys and exhilaration of the river, its bends, history and flow.
5) Training for this form of life takes us time to assimilate and digest, lots of reading, lots of talking, trying things out and learning new skills, gaining new experiences and learning from mistakes - all part of the human condition. Taking it step by step, single file by file helps to prevent us being overwhelmed by a torrent.
6) We might fear the future, what is further down the river, or around the next bend. Sometimes someone needs to push our canoes to improve our aim, or hold us back if we seem to stray too far or too fast, or suggest a change in diet, insulin , exercise to meet new challenges.
7) Remember to breathe. You cannot paddle well or take things in well if you stop breathing. Breathe in new knowledge as you breathe out the stress, worry, uncertainty. We all learn to see round most corners in time !
8) Cultivate your friends. People you can rely on, people you can have a chat with. Solitude on a river can be peaceful ( i met a platypus once like that) but loneliness is not fun. Keep warm regard with those that understand your state on the river of life and who cherish you for how you are.
9) there will be river regulations, like your medical check by a doctor before you are deemed fit to drive (canoeworthiness is next to cleanliness etc etc)
10) Develop interests/hobbies that help you with exercise, mental stimulation and are healthy for you, your pocket and your social outlook. Best Wishes. Ask away and make the most of your journey !

 

[Circuspony]

Hi - I got my T1 diagnosis last year at the age of 43 and 3 weeks before we were booked in a driving holiday in Spain!

If you Google DVLA and diabetes you'll come across the form you need to fill in. You'll have to send it off with your licence but you're fine to carry on driving. You'll get back your licence with a 3 year timespan on it.

Once I started on insulin my eyesight went a bit weird - common, but not helpful for driving. OH ended up doing all the driving on our holiday.

Have they asked you to keep a diary with what you're eating and BG levels? They'll use that to try and work out your insulin dosages,but it's trial and error to start with.

The other thing worth googling is medical alert bracelets. I have an ugly blue plastic one that I wear out and about. A hypo can appear like drunkenness and I didn't want to find myself either ignored by passers by, getting the wrong treatment or getting locked up in a police cell somewhere...

Good luck - lots of helpful people on here happy to advise

 

[kitedoc]

Just to give some answer as to why did this happen to me?
My understanding from Diabetes information pages is that some of us have inherited a tendency where our immunity system over-responds to a particular threat.
In that over-response our immune system hits a particular tissue or sets of tissues in our body causing damage, in the case of diabetes type 1 it is the insulin-producing cells of the pancreas gland that are damaged progressively from the initial onslaught.
Some types of viruses have been linked to the onset of diabetes in suspectible individuals. The infection may have occurred 12 months or more before diabetes is diagnosed.
There is still much unknown about why diabetes type 1 and similar conditions occur.

 

[Skipster]

Hello,
I was taken into hospital at the request of my GP on tuesday with high blood sugar and high ketone levels. Once at hospital I was then diagnosed and treated for DKA, my ketone levels were 7.7 which mean't nothing at the time but now I'm led to understand it was dangerously high.
Since then, they diagnosed me with type 1 diabetes and started me on Insulin injections four times a day.
I feel a bit shell shocked to be honest- I'm 28 so this wasn't something I was expecting at all. At times I'm feeling very emotional about it all. I feel as though I have a huge mountain to climb to learn about Diabetes.

I don't even really know where to start- I've now been discharged from hospital and am awaiting my first diabetic nurse appointment.
What happens during your first appointment?
I also have an appointment to see a dietitian- they visited me whilst I was in hospital but said I would have a further appointment when I was discharged. What happens in that appointment?

Finally, I'm also aware that I now need to inform the DVLA of my condition- once I have informed them can I drive immediately or do I have to wait for them to contact me to say it is ok?

I feel so confused by this all- I wish they could explain to me why I had developed type one Diabetes.

Thanks so much for reading

Hi Becky!,
Welcome to the club! I was diagnosed T1D at the start of May 2018 so empathise with your shell shock! Did you have the ‘joy’ of hourly observations while in hospital too?

The first few clinics are to make sure you know what you’re doing and to help answer questions. I had fantastic support from one of the diabetes nurses over my first fortnight.

My three clinic appointments so far have all started the same:
- pee sample (container provided)
- height and weight
- blood sample taken from finger for glucose testing
- my testing machine gets plugged in and they download my readings *dont forget to take it to all your appointments/never leave Home without it*

You may end up having other ‘standard’blood tests done after seeing a consultant.

They will disscuss the readings downloaded from your machine and how you generally are feeling. Advice will be given. Insulin levels reviewed and raised/lowered or untouched.

I called the dvla and they sent me a form to complete which was sent back and now under review. They told me unless told I can’t drive by a doctor, I am ok to drive BUT they are yet to formerly confirm this. Blood sugar must be tested before you drive and if low you can’t until it raises. I called my insurer too and informed them but they told me it does not effect my policy.

Stuff to do:
1. Don’t give up! It’s weird how quickly it all becomes‘normal’.
2.Call dvla medical line to inform and get the form to complete/return.
3.Register for medical exemption form (get from your gp).
4. Ask your gp to prescribe a sharps bin so you can store your used needle heads and lancet tips
5. Find out locally who collects the bin once full. Turns out my local council do this (SE London) but each area is different. Get advice form your clinic or gp.
6. Keep stocked! You will need various repeat prescriptions including Insulin, testing strips, needle heads and lancet tips.

Good luck! Keep going! You’ve got this!

 

[h884]

Welcome to the forum. You will get a lot of help and support here. Take things a day at time. Deal with the important things mentioned by others first such as DVLA etc

Give your DN a call with any queries nothing is too small to call about

 

[daisy1]

@BeckyBoo2824

Hello Becky and welcome to the Forum Here is the Basic Information we give to new members and I hope you will find it useful and helpful. Ask as many questions as you want and someone will 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 well over 235,000 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

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.

Over 145,000 people have taken part in the Low Carb Program - a 10 week structured education course that is helping people lose weight and reduce medication dependency by explaining the science behind carbs, insulin and GI.

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 blood glucose 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.
Take part in Diabetes.co.uk digital education programs and improve your understanding. Most of these are free.

• Low Carb Program - it's made front-page news of the New Scientist and The Times. Developed with 20,000 people with type 2 diabetes; 96% of people who take part recommend it... find out why
  
  
• Hypo Program - improve your understanding of hypos. There's a version for people with diabetes, parents/guardians of children with type 1, children with type 1 diabetes, teachers and HCPs.
  

 

[BeckyBoo2824]

Thanks so much for all of your replies. Really appreciate the support, advice and having somewhere to vent a bit!