Feeling lost

Call your diabetic unit and leave a message for one of the nurses to call you back.
I'm assuming your using nhs care and resident in the uk?

Tell nurse and ask for some support at mo. They should help.
Let me know how you get on. Please.

Welcome to the forums Lili, you have found the right place to get advice and help. I am going to tag @daisy1 who will be along in lots of info. I hope that other T1's arrive soon to answer some of your questions

Hi @Lili2209

Can I ask if your under the care of a hospital diabetes clinic? If not then ask your gp to refer you over to one, the advise & support there is far superior to that what you'd get in a gp surgery (especially as you have type 1, are planning on becoming pregnant and have other health issues). Best wishes.

I don't know much about your NHS but the impression I get from this forum is the diabetic care varies from location to location. Sounds like you're getting the "NHS Shuffle" in your current location. Is there any way you can get medical care in a different location even if it means you have to travel a ways? Here one can switch to a different medical provider within the insurance company's network, or pay a bit more and go out of network.

Hi @Lili2209

Sorry to hear that you've not received the care you should be. I would recommend ringing your GP asap and asking to see a diabetes nurse or specialist. As for wanting to try for a baby, you will need to be referred to the pre-pregnancy clinic. I've found them really helpful with helping to reduce my hba1c.

Good luck x

MelissaC said:

Hi @Lili2209

Sorry to hear that you've not received the care you should be. I would recommend ringing your GP asap and asking to see a diabetes nurse or specialist. As for wanting to try for a baby, you will need to be referred to the pre-pregnancy clinic. I've found them really helpful with helping to reduce my hba1c.

Good luck x

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That sounds like a good way to get local specialized diabetic care to me. Here I think virtually all Type 1 diabetics are under the direct care/supervision of an endocrinologist. General internists do care for a lot of Type 2's, but not Type 1's and no primary care physician has anything to do with pumpers.

It's a tough journey being diabetic, I've been type 1 since my late twenties, i'm late forties now, every day is a challenge as it really does affect every aspect of life. You have to dig deep emotionally and stay strong, look after yourself physically and eat the right food, try to cut down on the drink, it will do you no favours in the long run, doctors do help to a point but it's really up to you to educate yourself on all the aspects of diabetes and stay as well as you can with the (in my case too) limited professional care available, but don't ever blame yourself for this, none of it is your fault and never was, you're not alone, there are many like you here in the same place and have been through the worries that you are experiencing. You have the gift of a caring child and so have a lot going for you. Some days will be harder than others and on those tough days all you can do is remember to breathe and keep going, sounds like today is one of those days for you. Surround yourself with good knowledgeable people who care, above all take back control for yourself, it gets better if you take the right steps in the right direction to make it better, baby steps. gl)

Heya @Lili2209 Sorry to hear this Lili it's a tough road to travel on. I also felt similar to you a year or so after being diagnosed and felt lost and didn't care so much about looking after me, so I changed a few things, firstly I decided I had to own my diabetes, I didn't want my team or anyone else to take charge, taking ownership made me feel liberated, but it meant I had to learn as much as I could so bought books, including 'think like a pancreas' written by a type 1 for type 1's. I got onto a DAFNE course which was great and I learnt lots. I also took charge of my care so I became a pest and got help, I made them aware I was struggling and needed as much help as possible. I know having a baby means tighter control so why don't you start tracking your daily routine, you can use an app like Diaconnect to record insulin doses, carbs etc then you can send this to your team, get an email address so you can communicate direct with your team, and tell them you want to try for a baby, they will support you but you really do have to shout loudly to tell them exactly what you want. You can get better at this starting now, ignore the past, you can't change that but you can change the future right now, my daughter is my incentive to stay well so I think about making sure I do my best every day, seeing her grow up and being well so I'm never a burden is my goal, good luck you can do this

@Lili2209

Hello Lili and welcome to the Forum Here is the Basic Information we give to new members and I hope you will find this useful. Ask more questions when you need to and someone here will help.


BASIC INFORMATION FOR NEW MEMBERS

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 free 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. They're all 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.

Hi @Lili2209 ,

I too was diagnosed at the same age as you just over 3 years ago! I get what you are saying, it is frustrating! However, what helped me was to accept it, and make the choice to look after my health for the short term and long term for me and also my family. Since then I have tried to consume as much information as I can on diabetes and learn as much as possible. Sometimes too much I must admit, when that happens you have to take a break from it!

I see a lot people on this forum recommending a book called Think Like a Pancreas, I haven't read this one myself yet, but perhaps it might be useful. I am a firm believer in Dr. Bernstein's guidelines and would recommend you watch his free Diabetes University videos on you tube, also his book Diabetes Solution. These might be good places to start to get a better understanding of the disease and then you can take an informed decision on how you would like to manage it in a way that works for you! For me, my choice is low carb, but its a personal decision and one you have to monitor very closely with your doctor in terms of insulin, particularly if you decide to try the low carb way of eating.

For me its a lifestyle change and I have accepted that I just have to do things a bit different to my friends and family. It took me a long time to accept that, and of course there are still **** days, but I feel in control of my diabetes today and that is the most important thing for me!

I wish you the best of luck!

I was 26 when I was diagnosed. We have all walked this path in one stage of being a t1. And for some this path has been hard and lonesome. It's essential you get help and also support from a psychologist. If you can't get through to your care team speak to your Gp and get help from or via that route