Newly Diagnosed - In denial ?

[gawarren]

Hi,
Recently I had some bloods done for an annual review with my practice and a few days later I was asked to cancel my appointment and come in and see a practice nurse. She informed me that I was all of a sudden a type 2 diabetic with a Hba1c of 12.3
I was given a booklet to read from the NHS and put on Metformin 500mg to be started straight away.
My wife is a clinical nurse specialist in Cancer at the Royal Derby hospital and when she got home she was shocked that I hadn't been offered lifestyle changes and self monitoring before leaping in with the medication route.
I have read the booklet she gave me from cover to cover about the symptoms as well as the page on symptoms on this page and I can honestly say that I do not exhibit a single one. I feel great, in fact probably the best I've felt in a few years since I stopped smoking and cut down my alcohol intake. I've steadily lost some weight over the last couple of years.
Now I could probably cut down my alcohol further as I have a couple of glasses on an empty stomach after work most evenings whilst I wait for my wife to get home. I could probably cut down on the amount of carbs I have, we eat a lot of rice, bread, pasta and potatoes.....
So basically I called the PN the next day and said I am not convinced that I am type 2 based on the Hba1C and that I was not going to take the Metformin and want to repeat the test.
My first question is, what about everyone else ? When you were diagnosed were you having fits of fatigue ? peeing too much, have raging thirsts ? I get absolutely none of these so I am very confused.
My dad who is in his seventies was diagnosed Type 2 a while back and he was put on Metformin and he just told me it made him very very ill , so I am a bit apprehensive of taking it myself if my repeat test shows a similar value of 12.3
Now I did used to be classed as pre-diabetes with my old surgery where I had to do the fasting blood test then drink a certain amount of lucosade and then get another blood sample. We had to change surgeries when we moved house about 2and a half years ago.
This new PN at this new surgery says oh well we don't do that anymore, the new guidance is it can be diagnosed on the result of the Hba1c.
So this week I have more bloods taken and next week I am back in for discussions. Having read all that I have, I plan to refuse to take the metformin and ask instead for blood glucose monitoring equipment to see if I can manage my levels by adjusting my diet and alcohol consumption. If she refuses to prescribe a monitor and strips for free I think I will buy my own , see what I can do without drugs, and then they can review me again next year.
Does that sound feasible or should I just try the drugs ? I'm not sure I want metformin as if it made my Dad ill then the chances are it'll make me ill too ?
Thanks

 

[daisyduck]

Metformin made me ill too. I did persevere for 11 weeks as it is supposed to have other benefits but the awful side effects made me give up. Many people can and do take it though and there is a slow release version which is kinder. They don't usually prescribe that first as it's more expensive.
It is possible, as many of us have proved, to greatly reduce your BG on a low carb diet. Tons of information here on the forums so have a good read around. The success stories is a great thread.
You might be lucky to get a monitor and strips but many GP's won't prescribe those for type 2 .. I bought my own Codefree as the strips work out the cheapest. Tee2 is good and a similar price too.
The link for the Codefree meter is
http://homehealth-uk.com/product-category/blood-glucose/blood-glucose-monitor/
In UK we use mmol/L
You need to tick box that you're diabetic so you don't pay VAT
If you buy the strips in bulk the discount codes are
5 packs 264086
10 packs 975833

I'll tag @daisy1 who will post the welcome info for newbies.

 

[zand]

My first question is, what about everyone else ? When you were diagnosed were you having fits of fatigue ? peeing too much, have raging thirsts ? I get absolutely none of these so I am very confused.

I had been fatigued for years and got no help with this at all. No excess peeing or raging thirsts. I had become increasingly insulin resistant though. This meant I steadily put on weight and couldn't stop doing so, despite low fat/low cal diets. I now know this was the precursor to type 2 where the muscles become insulin resistant meaning they can't use the insulin effectively so the body produces even more insulin eventually causing weight gain and T2. My HbA1c was 8.6 at diagnosis but I knew I was T2 because of the uncontrollable weight gain I had experienced for very many years.

I would take the metformin and see how you get on with it. It is an old and therefore well tested drug. It can help reduce insulin resistance and reduce appetite. It also helps to bring down blood glucose levels a little by stopping the liver from dumping glucagon into the bloodstream. I follow a low carb diet and I found that metformin only upset my tummy when I had too many carbs, so it was a useful tool to remind me to stay on track too! Metformin has protective properties against some othe conditions too (some cancers for example) so I wouldn't dismiss it unless it really makes you very ill. My GP wouldn't let me have it for a while as my HbA1c fell to normal/prediabetic levels. I begged to be prescribed it again when my next bloods weren't quite as good. So I am happily taking it once more.

Welcome to the forum

 

[azure]

Hi @gawarren

Not every Type 2 will get symptoms. In fact, that's why there are often screenings offered - to pick up people with Type 2 who don't realise they have it as they feel pretty much fine.

If your blood sugar has gradually become higher, then your body can get used to the higher sugars and thinks they're normal.

Getting a blood glucose meter is a good idea

 

[Bluetit1802]

Hi,
Recently I had some bloods done for an annual review with my practice and a few days later I was asked to cancel my appointment and come in and see a practice nurse. She informed me that I was all of a sudden a type 2 diabetic with a Hba1c of 12.3
I was given a booklet to read from the NHS and put on Metformin 500mg to be started straight away.
My wife is a clinical nurse specialist in Cancer at the Royal Derby hospital and when she got home she was shocked that I hadn't been offered lifestyle changes and self monitoring before leaping in with the medication route.
I have read the booklet she gave me from cover to cover about the symptoms as well as the page on symptoms on this page and I can honestly say that I do not exhibit a single one. I feel great, in fact probably the best I've felt in a few years since I stopped smoking and cut down my alcohol intake. I've steadily lost some weight over the last couple of years.
Now I could probably cut down my alcohol further as I have a couple of glasses on an empty stomach after work most evenings whilst I wait for my wife to get home. I could probably cut down on the amount of carbs I have, we eat a lot of rice, bread, pasta and potatoes.....
So basically I called the PN the next day and said I am not convinced that I am type 2 based on the Hba1C and that I was not going to take the Metformin and want to repeat the test.
My first question is, what about everyone else ? When you were diagnosed were you having fits of fatigue ? peeing too much, have raging thirsts ? I get absolutely none of these so I am very confused.
My dad who is in his seventies was diagnosed Type 2 a while back and he was put on Metformin and he just told me it made him very very ill , so I am a bit apprehensive of taking it myself if my repeat test shows a similar value of 12.3
Now I did used to be classed as pre-diabetes with my old surgery where I had to do the fasting blood test then drink a certain amount of lucosade and then get another blood sample. We had to change surgeries when we moved house about 2and a half years ago.
This new PN at this new surgery says oh well we don't do that anymore, the new guidance is it can be diagnosed on the result of the Hba1c.
So this week I have more bloods taken and next week I am back in for discussions. Having read all that I have, I plan to refuse to take the metformin and ask instead for blood glucose monitoring equipment to see if I can manage my levels by adjusting my diet and alcohol consumption. If she refuses to prescribe a monitor and strips for free I think I will buy my own , see what I can do without drugs, and then they can review me again next year.
Does that sound feasible or should I just try the drugs ? I'm not sure I want metformin as if it made my Dad ill then the chances are it'll make me ill too ?
Thanks

I didn't have any symptoms at all when I was diagnosed, although my levels were nowhere near as high as yours are. 12.5% is high (it equates to 17.3mmol/l and that is an average over the past 2 to 3 months) so you need to work hard to get that right down to levels that are not causing damage to your body..

These are the levels in mmol/l to aim for initially
http://www.diabetes.co.uk/diabetes_care/blood-sugar-level-ranges.html

If I were you I would try the Metformin. You don't know until you try it whether it will make you ill or not. You may be one of the many that can tolerate it. However, it isn't a miracle drug and wouldn't mean you can carry on as you are. Diet is the key along with regular self testing. Carbohydrates are the main culprits, and as you eat a lot of rice you need to find a replacement for it until your levels are much improved. Similarly with bread, potatoes, breakfast cereals and pasta. We also need to be careful with fruit, especially juices, and milk.

Very few of us T2s are prescribed meters and strips, and those that are find the prescribed strips are insufficient. Your best bet is to buy one. You can then test before and after eating to see what your food is doing to your levels. This may help motivate you to cut right down on the carbs.

The earlier test you had that diagnosed pre-diabetes is called an Oral Glucose Tolerance Test. These are still done, are very useful, and you can certainly ask for one if you wish. The HbA1c is the normal diagnostic test, however.

 

[AM1874]

Hi @gawarren .. and welcome
You have come to the right place here .. so ask your questions and you will soon receive all the help, advice and support that you need ..

 

[MikeTurin]

Hi @gawarren
Not every Type 2 will get symptoms. In fact, that's why there are often screenings offered - to pick up people with Type 2 who don't realise they have it as they feel pretty much fine.

The problem with diabetes and pre diabetes is that symptoms are difficult to spot, for instance I found my condition because I am a blood donor and one day they found my fasting BG sky-rocketing.

Add to this that the information on diabetes in the general population is non existent or plain wrong, and one could have diabetes symptoms and interprets as a completely different problem.

 

[daisy1]

@gawarren

Hello and welcome to the Forum Here is the Basic Information we give to new members and I hope it will be helpful to 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 147,000 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.

.

 

[Lord Midas]

I was diagnosed back in Summer 2006, at the time it was the hottest summer on record. The week before I got my first symptoms I'd been in surgery for my knackered spine. I started becoming really thirsty. After a week or so I had discovered this unquenchable thirst, no matter how much I drank it made no difference. I was always peeing, though not surprising the amount of water I was drinking. I was sweating so much that I had to put towels down on the bed to soak it up when I slept.

Turns out that going for lots of wees in the middle of the night has a name: nocturia. They have names for everything.

I was putting all of this down to the blazingly hot summer, that I had a fair few extra pounds around the girth and that I had come out of surgery and this was a side effect of the anaesthesia.
When visiting restaurants I was also ordering a jug of water just for me, nevermind for the table!!

After about 5 weeks of this my partner bought me a blood testing kit, as she had heard that these are diabetic symptoms. On my first test I was 24mmol/L. I was like whoa!! We tested her, and she was 5mmol/L. Tested me and 24 again.

Visiting the doctor and he said that I was in the "close to a diabetic coma" territory. Thanks Doc. I was now a Type 2 diabetic and put on Metformin and some other smaller tablet that I can't remember the name of.

11 years later and I'm now officially a Type 1 and on Humalog and Lantus Glargine insulin.

My next step is a LCHF diet which, amazingly, my doc and nutritionist have never mentioned. It's always measure your carbs and and adjust your insulin depending on what you have. I'll be questioning them about this.

This is our disease and we need to manage it as best as we can. Do your research. Manage your diet and you can reverse your higher bloods and not require tablet. Excess carbs are the enemy.

 

[azure]

Are you saying you were misdiagnosed @Lord Midas ? That is, wrongly assumed to be a Type 2 when you were actually Type 1?

 

[gawarren]

Many thanks for all the replies comments and help, especially the fact that

"Not every Type 2 will get symptoms. In fact, that's why there are often screenings offered - to pick up people with Type 2 who don't realise they have it as they feel pretty much fine.

If your blood sugar has gradually become higher, then your body can get used to the higher sugars and thinks they're normal."

This was a very useful comment from @azure because one of the things I have been bewildered about is that I am not showing any symptom whatsoever, not even a jot ! Working with IT I tend towards having a very logical sort of mind which says "Look I am not displaying any of those symptoms so therefore how on earth can I have type 2 diabetes ?" - So now knowing that my BG has probably gradually increased over time so that my body thinks its at a normal level would explain this. Thanks

 

[MikeTurin]

So now knowing that my BG has probably gradually increased over time so that my body thinks its at a normal level would explain this. Thanks

This is correct, and remember that the initial phase symptoms are barely noticeable. I suppose only when splikes are going over 12 mmol/l one starts to notice something strange

 

[Lord Midas]

Are you saying you were misdiagnosed @Lord Midas ? That is, wrongly assumed to be a Type 2 when you were actually Type 1?

I wasn't misdiagnosed. I was definitely a Type 2. I was at a stage where my Insulin sensitivity was reduced or I wasn't producing enough. This is what my doctor said.

For the last 7 odd years I've been an "Insulin dependent Type 2 Diabetic". Last year I asked them to do a real proper thorough test to find out what I was. It was then confirmed I was a Type 1. My pancreas no longer worked. Boo.

 

[chalup]

I was running blood sugars in the mid 20's with no symptoms. It was caught when the toes on my right foot went numb. My HBA1c was 10.4 which is lower than yours. Please take this seriously. With a number that high you could be spiking close to 30 after meals and that will cause damage. The metformin will not control the problem but it can help. Lowering your carbs and testing before and after meals is the best way to get it under control. The info on how to do that is in daisy1's post. Please ask any questions you have and welcome to the forum.

 

[azure]

I wasn't misdiagnosed. I was definitely a Type 2. I was at a stage where my Insulin sensitivity was reduced or I wasn't producing enough. This is what my doctor said.

For the last 7 odd years I've been an "Insulin dependent Type 2 Diabetic". Last year I asked them to do a real proper thorough test to find out what I was. It was then confirmed I was a Type 1. My pancreas no longer worked. Boo.

You probably think I'm being a pedant here, but I'm still confused. Type 2 doesn't change to Type 1. Are you saying you have 'double diabetes'?

I kmow some Type 2s like @Mep make very little insulin but are still Type 2s. Type 1 is an auto immune condition.

Just trying to get what you're saying clear in my head

 

[Lord Midas]

You probably think I'm being a pedant here, but I'm still confused. Type 2 doesn't change to Type 1. Are you saying you have 'double diabetes'?

I kmow some Type 2s like @Mep make very little insulin but are still Type 2s. Type 1 is an auto immune condition.

Just trying to get what you're saying clear in my head

I'm learning a lot today, @azure . @GrantGam said the same thing in a different tpost. This is what happens when doctors tell you things. My initial Doc said I was type 2, then 9 years later I'm told I'm actually a Type 1. The next time I have my half year check-up I'll be asking them to clarify.

From what you guys have said, I'm probably a Type 2 Insulin Dependent Diabetic (gotta love the long titles)

 

[catapillar]

For the last 7 odd years I've been an "Insulin dependent Type 2 Diabetic". Last year I asked them to do a real proper thorough test to find out what I was. It was then confirmed I was a Type 1. My pancreas no longer worked. Boo.

What was this test?

A test to confirm whether or not your pancreas is producing insulin (usually a cpeptide test) only tells you whether or not you are producing insulin. It doesn't tell you why you aren't producing insulin. Type 1s don't produce insulin because it's an autoimmune disease where the immune system kills off insulin producing beta cells. Some type 2 diabetics don't produce insulin because their beta cells get exhausted from producing more and more insulin to combat insulin resistance.

 

[Lord Midas]

What was this test?

I've updated my signature to clear up some doubt. Doubts which I now have. My Doctors have told me this is what happened, and I've just gone along with it. My assumption being that they know what they are talking about!!

 

[Resurgam]

I had no symptoms and was diagnosed with a BG of 17.1 mmol/l. Now that the numbers have dropped I do feel better and some things are less than they were but the classic symptoms were not obvious at all.
Rather than sitting and drinking a glass or two - perhaps you could get the dinner started? I prefer to use fresh stuff and slow cooking where appropriate which can mean longer lead times, but it is so worth it - and knowing how to prepare low carb versions of dishes might be really useful from time to time.

 

[MikeTurin]

I've updated my signature to clear up some doubt. Doubts which I now have. My Doctors have told me this is what happened, and I've just gone along with it. My assumption being that they know what they are talking about!!

Or maybe was a plain misdiagnosis.
A lot of LADA cases are initially diagnosed as type 2.
The test on antibodies is seldom made by GPs (ok in my case actually my GP never ordered to me an HbA1c test even when I was having costantly high fasting BG level but in the 'normal' range.