So confused... Type 1 or 2 or what?

MrsJackie

Member
Messages
10
Type of diabetes
Type 1
I was diagnosed with diabetes on 7th October this year (lost 15kg in 3 months, excessive thirst, dizziness etc)... my Dr assured me it was Type 2 and said at some point we would do a blood test to confirm. He put me straight on metformin which I didn't like at all, after a couple weeks I said I wanted to come off it (had blurred vision, cramps and felt dreadful) and try to control with diet. He told me with levels like mine, I wouldn't be able to... I ignored him, came off it and have kept my levels around 4-5 ever since. I had a number of health professionals tell me low carb diets were bad and I should be eating 'at least 8 serves of carbs a day' and when I said this would send my levels up, was told I could go back on metformin! This makes no sense to me!! I then went back to my Dr and demanded to have type 2 confirmed, he sat on my results for 10 days before telling my mum offhandedly in one of her appointments that I was prob Type 1 but he couldn't be sure, and threw a piece of paper with my results on it. He said I should come see him to get a referral to see an endocrinologist... I will do that in the next few days when I'm not in the mood to punch him! My GAD levels were >2000 and everything else was low. Does this point to Type 1? How am I able to control my levels so well if it is? I'm so fed up of being given so much conflicting information!
Sorry this is so long... I'd just started to get my head around being Type 2 so this is now a bit of a shock!
 

tim2000s

Expert
Retired Moderator
Messages
8,934
Type of diabetes
Type 1
Treatment type
Other
Hi @MrsJackie, sorry to hear about the pain of diagnosis. It seems that your GP deserves that punch in the mouth you are feeling like giving them. It sounds very much as though, with the symptoms you describe, that you are Type 1. Type 2 is not usually associated with significant weight loss and high GAD results.

Eating a very low carb diet whilst you are in the honeymoon period can allow management of glucose levels. as @wiserkurtious has found. I've tagged @daisy1 to give you some information, and you might also want to take a look at this topic: http://www.diabetes.co.uk/forum/threads/useful-tools-and-links-for-t1ds.88209/
 
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Mep

Well-Known Member
Messages
1,461
Type of diabetes
Treatment type
Insulin
@MrsJackie - so sorry to hear you've been treated this way. Your doctor should've organised for you to be seen by an endocrinologist straight away if he wasn't able to request the diagnostic tests himself. But the GAD and c-peptide test results would show what type you have. If you have anti-bodies and you have low production of insulin then you'd be Type 1 or Type 1.5. I'd say Type 1 if you've only just identified a problem. I hope you can get seen to quickly and get the right treatment. It sounds like you should be on insulin therapy. I wish you the best. :)
 

Brunneria

Guru
Retired Moderator
Messages
21,889
Type of diabetes
Type 2
Treatment type
Diet only
Hi and welcome!

You are having a frustrating time - like so many of us. :(

Well done for achieving so much by diet, and well done for pushing your doc for a proper test.
Hopefully someone with GAD knowledge will be along to comment on your result.

There are a couple of things that I can offer some insight into though. Have you ever heard of the Honeymoon Period? It is the early stages of T1 when the pancreas is still firing up, which can help to control blood glucose, especially if combined with diet.

Also, to avoid that nonsense with the doc witholding results from you, I should sign up for the patient online access. Every surgery in the UK (are you in the UK?) should have this available since April this year. You should be able to get your results over the internet, using a secure password. Ask at reception. Take some ID in, and you should be given access to test results, and order prescriptions too.

Re your doc giving the test results casually to your mother - that is a HUGE breach of confidentiality, and worth a complaint, in my opinion. I would be fuming.

I would also be pushing to get that endocrinology referral as soon as possible, and get my diabetes care into the hands of someone with more discretion and more professionalism!
 

MrsJackie

Member
Messages
10
Type of diabetes
Type 1
@MrsJackie - so sorry to hear you've been treated this way. Your doctor should've organised for you to be seen by an endocrinologist straight away if he wasn't able to request the diagnostic tests himself. But the GAD and c-peptide test results would show what type you have. If you have anti-bodies and you have low production of insulin then you'd be Type 1 or Type 1.5. I'd say Type 1 if you've only just identified a problem. I hope you can get seen to quickly and get the right treatment. It sounds like you should be on insulin therapy. I wish you the best. :)
Thanks so much for your reply... can I ask what it is that makes you think I should be on insulin therapy? My sugars have been really good so far :)
 

catapillar

Well-Known Member
Messages
3,390
Type of diabetes
Type 1
Treatment type
Insulin
A GAD result of >2000 is a positive GAD test. The standard GAD result is undetectable. With a positive GAD test and your presentation, it seems you are type 1.

Ask for a referral to the diabetic clinic - you should be under anendocrinologist and be monitored to consider insulin therapy when necessary.
 

MrsJackie

Member
Messages
10
Type of diabetes
Type 1
Hi and welcome!

You are having a frustrating time - like so many of us. :(

Well done for achieving so much by diet, and well done for pushing your doc for a proper test.
Hopefully someone with GAD knowledge will be along to comment on your result.

There are a couple of things that I can offer some insight into though. Have you ever heard of the Honeymoon Period? It is the early stages of T1 when the pancreas is still firing up, which can help to control blood glucose, especially if combined with diet.

Also, to avoid that nonsense with the doc witholding results from you, I should sign up for the patient online access. Every surgery in the UK (are you in the UK?) should have this available since April this year. You should be able to get your results over the internet, using a secure password. Ask at reception. Take some ID in, and you should be given access to test results, and order prescriptions too.

Re your doc giving the test results casually to your mother - that is a HUGE breach of confidentiality, and worth a complaint, in my opinion. I would be fuming.

I would also be pushing to get that endocrinology referral as soon as possible, and get my diabetes care into the hands of someone with more discretion and more professionalism!
I'm in Australia unfortunately! The annoying thing is that I've always rated this GP very highly... won't be seeing him again after this! I have just started reading about the honeymoon period.. doesn't seem it lasts very long
 

Daibell

Master
Messages
12,650
Type of diabetes
LADA
Treatment type
Insulin
Hi. Typical of many GPs like mine I'm afraid. A high GAD score almost certainly means T1 (aka T1.5 or Late onset T1). Your weight loos is another indicator. As @Brunneria says, you are probably in the honeymoon period. It took 5 or more years for me to get to the point of needing. Gliclazide helped for a few years although I had to suggest to my diabetes GP that he put me on it (he agreed). This drug stimulates the pancreas to produce more insulin. So, the options are likely to be to have more tablets added before insulin being needed. Don't worry about possibly needing insulin in the future - I found it a salvation from having to starve myself and it's not a big problem.
 

MrsJackie

Member
Messages
10
Type of diabetes
Type 1
A GAD result of >2000 is a positive GAD test. The standard GAD result is undetectable. With a positive GAD test and your presentation, it seems you are type 1.

Ask for a referral to the diabetic clinic - you should be under anendocrinologist and be monitored to consider insulin therapy when necessary.
Thanks! I will def get that organised. I have a lot of Type 2 in my family so the in total diagnosis whilst a bit of a shock, was easier to get my head around. Type 1 seems so much scarier...
 

MrsJackie

Member
Messages
10
Type of diabetes
Type 1
Hi. Typical of many GPs like mine I'm afraid. A high GAD score almost certainly means T1 (aka T1.5 or Late onset T1). Your weight loos is another indicator. As @Brunneria says, you are probably in the honeymoon period. It took 5 or more years for me to get to the point of needing. Gliclazide helped for a few years although I had to suggest to my diabetes GP that he put me on it (he agreed). This drug stimulates the pancreas to produce more insulin. So, the options are likely to be to have more tablets added before insulin being needed. Don't worry about possibly needing insulin in the future - I found it a salvation from having to starve myself and it's not a big problem.
Thank so much... its really good to hear things like that x
 

MrsJackie

Member
Messages
10
Type of diabetes
Type 1
Hi and welcome!

You are having a frustrating time - like so many of us. :(

Well done for achieving so much by diet, and well done for pushing your doc for a proper test.
Hopefully someone with GAD knowledge will be along to comment on your result.

There are a couple of things that I can offer some insight into though. Have you ever heard of the Honeymoon Period? It is the early stages of T1 when the pancreas is still firing up, which can help to control blood glucose, especially if combined with diet.

Also, to avoid that nonsense with the doc witholding results from you, I should sign up for the patient online access. Every surgery in the UK (are you in the UK?) should have this available since April this year. You should be able to get your results over the internet, using a secure password. Ask at reception. Take some ID in, and you should be given access to test results, and order prescriptions too.

Re your doc giving the test results casually to your mother - that is a HUGE breach of confidentiality, and worth a complaint, in my opinion. I would be fuming.

I would also be pushing to get that endocrinology referral as soon as possible, and get my diabetes care into the hands of someone with more discretion and more professionalism!
Thanks! I've been feeling like I've been banging my head against a brick wall for the last few months! Hopefully I'll get into an endocrinologist quickly and then feel a bit more like someone is taking this seriously :)
 

Mep

Well-Known Member
Messages
1,461
Type of diabetes
Treatment type
Insulin
Thanks so much for your reply... can I ask what it is that makes you think I should be on insulin therapy? My sugars have been really good so far :)

ah my apologies... you may not need it right now... but if you're definitely type 1 you will need it sooner or later, that's what I was thinking. But only the diagnostic test results will tell you that. I noticed you're in Australia, I am also. I have been seeing an endocrinologist regularly since I was diagnosed and I've had the same one for years now. I'm type 2, but I'm now insulin deficient which means I'm on insulin therapy to treat my diabetes.
 
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MrsJackie

Member
Messages
10
Type of diabetes
Type 1
I hope I find one I can trust... so far I've not been too impressed with the professionals! I know the insulin is inevitable... by then I plan to be well and truly informed about all my options :)
 
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azure

Expert
Messages
9,780
Type of diabetes
Type 1
Treatment type
Pump
Thanks so much for your reply... can I ask what it is that makes you think I should be on insulin therapy? My sugars have been really good so far :)

Thre is some evidence that early use of insulin helps protect any remaining beta cells (insulin-producing cells).

Sadly, many adults are mistakenly diagnosed as Type 2. Your weight loss and GAD results do,strongly suggest Type 1. Make sure you get a quick referral to a specialist.

If you're looking for a book Think Like A Pancreas is popular here amongst Type 1s and an easy read :)
 
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daisy1

Legend
Messages
26,457
Type of diabetes
Type 2
Treatment type
Tablets (oral)
Dislikes
Cruelty towards animals.
@MrsJackie

Hello and welcome to the forum :) Here is the basic information we give to new members and I hope you will find it helps you. Ask as many questions as you want and someone will be able to answer.



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 220,000 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.
 
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