• Guest - w'd love to know what you think about the forum! Take the 2025 Survey »

Brand New and Very Confused

A

addiequince

Member
Messages
7
Location
Essex
Type of diabetes
Type 1.5
Treatment type
Insulin
Hi everyone!!

I'm brand new to diabetes.
Diagnosed two weeks ago, after a long few years of medical issues.

I'm 28.
I have epilepsy.
I had bacterial meningitis and septicemia in March 2015.
It left me with pain in my right knee, which is still having investigations into the ongoing fault.
More recently, I've developed numbness is my right foot, which I thought was related, but when speaking with my GP about it, she wanted to "rule out" Diabetes.

Quite a few blood tests later and I'm told I have diabetes.
Doctor said she isn't quite sure what type I have, and I have had a further blood test today that apparently can confirm the type.

I've been started on Metformin, 500mg with breakfast for the first week, with breakfast and dinner for the second week, and then breakfast lunch and dinner from the third week.
I've started the second week today.
The doctor said she was more considering that I've got Type 1, but has put me on these tablets to get me started before anything else is confirmed.

I feel a bit in limbo at the moment. I don't understand diabetes, I don't understand how or why I've got it.
I'm not overweight, I eat a healthy and balanced diet. I feel quite betrayed by my body for this happening.

I have no clue about anything related to diabetes at all.

However, I do have my first appointment with the Diabetic Nurse tomorrow morning.

I'd be incredibly grateful to anyone that could give me advice, suggestions, and good questions to ask tomorrow.
 
You really must feel in limbo, especially not knowing for sure which type you are, and also knowing nothing about diabetes.

I suggest you read up all about it and ask questions on here. You will discover that Types 1 and 2 are very different from each other, so the sooner you know where you are with your diagnosis the better. Both types are associated with blood glucose levels that are far too high, but the reasons for this are entirely different....... and neither is your fault (despite what the media puts out - that is just sensationalism and is mostly rubbish.)

One piece of important advice I have is please obtain print outs of all your test results (or check with the surgery if these are put on-line and ask how to register for them) You can ask your nurse tomorrow morning.

You need all this information in black and white in front of you for many reasons. Firstly, you will, from now on, have many blood tests most likely for the rest of your life, so you need to know where you are starting from and be able to compare results down the line to see how well (or otherwise) you are managing to control matters. Secondly, they will help you understand all the numbers, measurement units, desired ranges to achieve. Thirdly, we cannot always rely on our doctors to tell us everything. They are fond of saying "fine" or "normal" but often (quite often sometimes) they fail to notice that although you may be normal now, you are deteriorating and teetering on the edge of not being normal, and this will give you chance to do something about it before it is too late. As far as diabetes is concerned you particularly need all glucose results, all cholesterol and lipid results, all kidney & liver function results, and all full blood count results. All these should be on your print outs or on-line.

I wish you luck on your new journey - and please read round the forums and ask questions when you have some. :)
 
addiequince said:
I feel a bit in limbo at the moment. I don't understand diabetes, I don't understand how or why I've got it.
I'm not overweight, I eat a healthy and balanced diet. I feel quite betrayed by my body for this happening.
Click to expand...
There are many known things that "cause" diabetes and more unknown things: no one seems to know what causes type 1 diabetes, for example. Think about people in the public eye with diabetes: Steve Redgrave, Halle Berry, Theresa May, ... none of these would be considered to be overweight and sportsmen. for example, put a lot of focus on their diet.
We could spend years worrying about what causes our condition but I prefer to focus on what I can do to manage my diabetes now rather than what I didn't do (and didn't know to do) in the past.
What causes diabetes is important for researchers to understand to stop future generations from getting the condition.

You say you have further tests today. Hopefully, after that, you can start to treat your condition.
There is a lot to learn and it can be very overwhelming - 15 years after my diagnosis, I am still learning. But one month after diagnosis, I felt I understood enough to start taking control.
 
Hi, confusing isn't it. Basically as for many medical conditions there is a spectrum of 'types' but basically T1 is where the pancreatic islet cells die usually thru an anti-body reaction and hence your insulin production is very low. It can come on at any time of life but more commonly when young. When it comes on as an adult it is called LADA (Latent Auto-immune Diabetes in Adulthood) and may come on slowly. It is essentially T1. T2 is usually associated with excess weight and insulin resistance in the muscles which prevents the body using insulin. I suspect you may have been given a GAD test to check for anti-bodies and also a c-peptide test which measures your insulin production (high=T2 and Low=T1). As you are not overweight, T1 becomes more likely particularly if you have lost weight recently unexpectedly. Metformin is OK for both types. It doesn't affect blood sugar by much but helps. If you are T1 (LADA) then you may have one or two other tablets added for a while but you will need to go onto insulin eventually; don't panic as it's a nuisance more than a problem and works well. I've been down the LADA route but be aware that the GAD test may come back negative for anti-bodies but viruses etc can also cause islet cell death. Arguments continue on whether that is LADA or T2. My result was negative but I declare myself LADA as my C-peptide was low and I need insulin. Don't worry too much about the type but having the right treatment is essential. Note that a low-carb diet is the right diet approach for most of us. Ignore the current low-fat mantra as fats are not a problem and for 'sugar' read 'carbs'. I've copied @daisy1 who will provide a good range of advice for newbies.
 
Daibell said:
Hi, confusing isn't it. Basically as for many medical conditions there is a spectrum of 'types' but basically T1 is where the pancreatic islet cells die usually thru an anti-body reaction and hence your insulin production is very low. It can come on at any time of life but more commonly when young. When it comes on as an adult it is called LADA (Latent Auto-immune Diabetes in Adulthood) and may come on slowly. It is essentially T1. T2 is usually associated with excess weight and insulin resistance in the muscles which prevents the body using insulin. I suspect you may have been given a GAD test to check for anti-bodies and also a c-peptide test which measures your insulin production (high=T2 and Low=T1). As you are not overweight, T1 becomes more likely particularly if you have lost weight recently unexpectedly. Metformin is OK for both types. It doesn't affect blood sugar by much but helps. If you are T1 (LADA) then you may have one or two other tablets added for a while but you will need to go onto insulin eventually; don't panic as it's a nuisance more than a problem and works well. I've been down the LADA route but be aware that the GAD test may come back negative for anti-bodies but viruses etc can also cause islet cell death. Arguments continue on whether that is LADA or T2. My result was negative but I declare myself LADA as my C-peptide was low and I need insulin. Don't worry too much about the type but having the right treatment is essential. Note that a low-carb diet is the right diet approach for most of us. Ignore the current low-fat mantra as fats are not a problem and for 'sugar' read 'carbs'. I've copied @daisy1 who will provide a good range of advice for newbies.
Click to expand...

Just to add. Not all T2 are/were over weight on diagnosis. Up to 20% of T2s are slim or thin. As has been said, no one really knows the causes of any of the types of diabetes so beating ourselves up with thoughts of what we may have done wrong is a complete waste of time.
 
Hello addiequince and welcome to the forum.
 
@addiequince

Hello Addiequince and welcome to the Forum :) Here is the Basic Information we give to new members and I hope you will find it useful. Ask as many questions as you need to 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 well over 250,000 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.
 
Newby here too, diagnosed on Monday and given a testing kit and Gliclozide to take twice a day. Not really told much more by the nurse other than to record test results 4 times a day. Not sure when they contact you again to go through the results and my results don't seem to have changed a great deal yet (I was told it can take a few days for the pills to kick in!)

Its all very confusing. I'm 34, healthy, active and not overweight and believe family genetics are most likely why I have this rather than from abusing my body. They think I'm type 2 but not certain.

I'd love to know how long it takes to get down from the 16s to a normal BGL? I'm a little impatient but will do whatever I need to do to be considered 'normal' again!! God knows what my BGL was after my Chinese buffet takeaway and full litre bottle of coke that I consumed on Friday night just gone!!
 
Sawds said:
Newby here too, diagnosed on Monday and given a testing kit and Gliclozide to take twice a day. Not really told much more by the nurse other than to record test results 4 times a day. Not sure when they contact you again to go through the results and my results don't seem to have changed a great deal yet (I was told it can take a few days for the pills to kick in!)

Its all very confusing. I'm 34, healthy, active and not overweight and believe family genetics are most likely why I have this rather than from abusing my body. They think I'm type 2 but not certain.

I'd love to know how long it takes to get down from the 16s to a normal BGL? I'm a little impatient but will do whatever I need to do to be considered 'normal' again!! God knows what my BGL was after my Chinese buffet takeaway and full litre bottle of coke that I consumed on Friday night just gone!!
Click to expand...

Hi @Sawds, I was pretty much the same as you, healthy active etc etc and just as shocked to be diagnosed type 2, dont worry its not your fault, it happens, the thing is you must get on with it and your in the right place to do that,
the first thing you must do is ditch the litre bottles of coke, I dont know what you consumed in your Chinese buffet it may have been OK, or it may not depending on how many carbs (sugar) it contained.

Just read through this web site it will lead you to all sorts of useful information and learn as much as you can. Regarding your question how long to get down to normal, thats up to you, everyone is different but the most popular method at the moment is LCHF (Low Carbohydrate, High Fat) diet coupled with excersise and Intermittant Fasting. Good luck
 
It isn't you that is wrong.
If you are type two it is probably the fault of the foods laid out in front of you which are supposed to be a healthy balanced diet - if you had the sort of diet you most likely need, one low in carbs especially sugars you might never have been detected as diabetic due to the way low carb reduces the production of insulin - or rather doesn't trigger it at such a rate as the normal way of eating.
If you are type one then your pancreas has been disabled due to some error in identification of it as a benign inclusion. As yet the reason for the error remains a mystery.
There is a long history of blaming the patient for their ailments - sometimes it has some small amount of truth, but it is hardly helpful.
It is rather like blaming a shepherd for contracting a disease associated with handling sheep.
 
Guzzler said:
Just to add. Not all T2 are/were over weight on diagnosis. Up to 20% of T2s are slim or thin. As has been said, no one really knows the causes of any of the types of diabetes so beating ourselves up with thoughts of what we may have done wrong is a complete waste of time.
Click to expand...
You are right and those T2s who are not overweight are quite likely to be Late onset T1. There is a discussion on another one of these forums about T1 only being caused by auto-immune effects and anything else being T2 which is really silly. Pancreatitis and viruses together with anti-bodies can all destroy the islet cells leaving the body essentially in the same state i.e. low insulin output. I would recommend any slim T2 to ask for the two tests for anti-bodies and c-peptide level to determine what the real diagnosis might be. I was treated as a T2 and was given insulin far too late because I was never offered the tests and assumed to be insulin resistant.
 
Daibell said:
You are right and those T2s who are not overweight are quite likely to be Late onset T1. There is a discussion on another one of these forums about T1 only being caused by auto-immune effects and anything else being T2 which is really silly. Pancreatitis and viruses together with anti-bodies can all destroy the islet cells leaving the body essentially in the same state i.e. low insulin output. I would recommend any slim T2 to ask for the two tests for anti-bodies and c-peptide level to determine what the real diagnosis might be. I was treated as a T2 and was given insulin far too late because I was never offered the tests and assumed to be insulin resistant.
Click to expand...

Are you dismissing wholly that some slim T2s are actually T2?
Michael Moseley, Tim Noakes, Steve Redgrave and Halle Berry. All slim and all T2.
 
I'm a slim Type 2 and have controlled my diabetes first by oral medication and then diet only being LCHF.
My last bloods came back at 37.
 
addiequince said:
Hi everyone!!

I'm brand new to diabetes.
Diagnosed two weeks ago, after a long few years of medical issues.

I'm 28.
I have epilepsy.
I had bacterial meningitis and septicemia in March 2015.
It left me with pain in my right knee, which is still having investigations into the ongoing fault.
More recently, I've developed numbness is my right foot, which I thought was related, but when speaking with my GP about it, she wanted to "rule out" Diabetes.

Quite a few blood tests later and I'm told I have diabetes.
Doctor said she isn't quite sure what type I have, and I have had a further blood test today that apparently can confirm the type.

I've been started on Metformin, 500mg with breakfast for the first week, with breakfast and dinner for the second week, and then breakfast lunch and dinner from the third week.
I've started the second week today.
The doctor said she was more considering that I've got Type 1, but has put me on these tablets to get me started before anything else is confirmed.

I feel a bit in limbo at the moment. I don't understand diabetes, I don't understand how or why I've got it.
I'm not overweight, I eat a healthy and balanced diet. I feel quite betrayed by my body for this happening.

I have no clue about anything related to diabetes at all.

However, I do have my first appointment with the Diabetic Nurse tomorrow morning.

I'd be incredibly grateful to anyone that could give me advice, suggestions, and good questions to ask tomorrow.
Click to expand...

Hi , welcome to the club no one wants to join .

Find out what thierstance is on diet - if they say Eatwell plate, then you know the dietary advice is to be ignored, so s mileand nod then come here for that instead!

Take look at the low carb program, You will probably find you will be better off if you stop eating a " healthy balanced diet" - especially if that includes processed foods like pasta , wheat, bread - whole meal or not.

Instead you want to eat a healthy real foods diet focused on highly nutritious foods. banish sugar and added sugars, embrace, fats, butter, nutrient dense meats, fish and for example avocados eat lots of greens .
 
Hi addiequince and Sawds and welcome. I was also surprised to be diagnosed with T2 I was 76 and very slim . I don't really fit the general image for a T2 never been over weight or a takeaway food addict and never ate a lot of sugar stuff. I don't really believe that what we eat causes diabetes there is far more to it than that and no one really knows yet what causes it. The high fat low carb diet not the NHS recommendation one but many here do it may or may not suit you. We are not experts so can't know what you can or can't eat we can only say what we as individuals do. We are all very different and unfortunately there is no one way to suit all and only you will find out what suits you personally it is all trial and error
 
Hi again everyone.

Sorry, I've had a manic week of work, hospital appointments, feeling generally lousy and now I'm back at work on night shifts for a week :(

The meeting with the nurse wasn't quite what I was expecting. I didn't really learn a lot about my condition, she was more focused on keeping my stress levels lower, and dismissing what doctors had been talking to me about.

I've been told to avoid carbs and fruit (which makes me want to cry, I love rice, pasta, potatoes etc...and with shift work I snack on fruit all the time!)
I feel pretty down about it all at the moment, I don't really care about my Type, I just want to know what I can do, what i can and can't eat, and how I can get a good balance despite the shift work.

I have a follow up appointment on Thursday with the GP, and hopefully all my blood test results will be back in, so I might be a step closer to some answers.

It's lovely to come back on here and read everyone's replies. I really appreciate the openness of forums like this.
 
It's hard to take everything in at first. All the information and the conflicting information which had me shouting at my iPad at times. Then, when you're over the initial shock/numbness you start to make sense of it all and after that you can formulate a plan and set goals for yourself. Take it steady and you'll get there in the end. Good luck.
 
Back
Top