How were you told?

Dabe

Active Member
Messages
44
Type of diabetes
Type 2
Went to docs for acid reflux after a holiday two blood tests later "can you pop into surgery we need to discuss your tests" . 5 mins in surgery to be told I'm type 2 and need to see this person that person and the other person
 

archersuz

Well-Known Member
Messages
1,213
Type of diabetes
Type 2
Archersuz, I was diagnosed in April 2017, I have had my eyes checked and my feet but no Desmond course offered. A friend of mine (same town, doctor and T2) had eyes checked on Desmond course but no foot check!
I haven't been offered a foot check but I had my eye check very quickly! Go back to your GP or DN and ask for a DESMOND course, they're supposed to be good.
 

Hammer1964

Well-Known Member
Messages
249
Type of diabetes
Type 2
Treatment type
Tablets (oral)
Dislikes
Meat, meat substitutes and fish
I haven't been offered a foot check but I had my eye check very quickly! Go back to your GP or DN and ask for a DESMOND course, they're supposed to be good.

Mmm will hold off on that one, my friend who goes to Desmond’s was advised to follow The Eatwell Plate.
 

Bluetit1802

Legend
Messages
25,216
Type of diabetes
Type 2 (in remission!)
Treatment type
Diet only
I haven't been offered a foot check but I had my eye check very quickly! Go back to your GP or DN and ask for a DESMOND course, they're supposed to be good.

Yes, very good if you want tea and cakes at the interval, and talks on the Eatwell Plate.
 

lossie34

Newbie
Messages
1
Type of diabetes
Type 2
Treatment type
Diet only
Apparently my HbA1C is 59. Was told on the phone 2 days ago while discussing recovery from an arthroscopy. Was ‘misdagnosed’ 5 years ago and so was aware of the significance. Also still have a monitor thingy. Don’t get to speak to the doc til next week so no idea what she has planned for me. Meanwhile I’ve cleared my cupboards of rubbish and filled them with healthy stuff. Just need to figure out how to prepare it!
 

Lampman

Well-Known Member
Messages
163
Type of diabetes
Type 2
Treatment type
Diet only
I went for my annual blood test for blood pressure medication, and a few days later a phone call from a doctor in the practise I had not seen before. She said she wanted me to have another test as my blood glucose was high, which I did. Then she called again and asked me to come and see her. I looked her up and she was the diabetic specialist GP in the practise. After that it was no great surprise, but she did a lot of explaining and booked me on a DESMOND course. Not a surprise by the time I got there, but still a bit of a shock to hear the words!
 

EllsKBells

Well-Known Member
Messages
362
Type of diabetes
Type 1
Treatment type
Insulin
I was under the very mistaken impression that t1ds were given more info on dx. That is appalling. Did you have to work.it out by yourself? How long until you had some actual help?

I wish! Went to the doctors as had been drinking, weeing, and exhausted for weeks - couldn't get a doctors appointment for another month, so saw the nurse. She took a urine sample and then disappeared, finally reappearing to ask me to wait to see one of the doctors.

Doctor: So the nurse tells me you've just been diagnosed with diabetes
Me: stunned silence.

I was 16 at the time, and eventually she cottoned on and sent me to fetch my dad, who was with me.

Doctor: I can't actually remember what to do about diabetes, so I think you'd better just go to the hospital.

Cue an evening in A&E on Friday night, and about a week later a visit from the DSN whose answer to every question was to say "ooh that's a very good question..." and then change the subject. DId get a bit more information when I finally saw the consultant, but honestly, I think most people just muddle along as best they can.
 

Biggles2

Well-Known Member
Messages
324
Don’t get to speak to the doc til next week so no idea what she has planned for me. Meanwhile I’ve cleared my cupboards of rubbish and filled them with healthy stuff. Just need to figure out how to prepare it!
Welcome to the forum @lossie34 you will find wonderful support here. I will tag @daisy1 as she has a very helpful welcome letter with plenty of useful information to get you started!:)
 

Books1

Well-Known Member
Messages
153
Type of diabetes
LADA
Treatment type
Insulin
Asked for blood test at surgery as eyesight was v wonky but optician said eyes not the problem.
Back to surgery for results - walk into consulting room and doc says 'so how long have you had diabetes then?'
Me 'that's the diagnosis then is it?'
Doc disappears to find senior partner who says 'so who else has diabetes in your family?'
Me 'no one'
Doc 'are you sure?'
Me 'yes'
Doc - having finally looked at my medical record 'hmm think it might be type 1 you need to see your endo consultant asap and try to cut down on your sugar in the meantime'
Hence why I'd rather see the hospital docs/nurses rather than my surgery!
 
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Jo_the_boat

Well-Known Member
Messages
784
Type of diabetes
Type 2
Treatment type
Diet only
Looking at a read-out of numbers from various blood tests is straight forward. Their interpretation and what some HCPs do with that information is where things fall down, at least in some (many?) cases. Some of your stories here are frankly callous.
The knowledge of doctors and nurses nurses varies widely as do their personalities - it seems pot luck if we get informed, sympathetic treatment. Some is very good, let's not forget that. But some is very poor, and that's where things need to change.
We have some very knowledgeable, determined people on here who are prepared to research, learn and try and take control of their own conditions. But not everyone is like that. Thank goodness that you folks 'in the know' are here to help level up the playing field so everyone gets a more equal chance of managing our condition. It shouldn't be down to you, but at the moment it is.
Mine was sort of in the middle and I genuinely think they did their best for me - limited somewhat by the guidelines within which they are obliged to operate (diet / medication). I won't say any more till I've had chance to speak with them after my next tests.
Overall I believe that education and knowledge is the key and it's pretty obvious there isn't enough of either.
 
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daisy1

Legend
Messages
26,457
Type of diabetes
Type 2
Treatment type
Tablets (oral)
Dislikes
Cruelty towards animals.
Here is the Basic Information we give to new members and I hope you will find it useful. Ask questions when 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.
 

Kentoldlady1

Well-Known Member
Messages
733
Type of diabetes
Type 2
Looking at a read-out of numbers from various blood tests is straight forward. Their interpretation and what some HCPs do with that information is where things fall down, at least in some (many?) cases. Some of your stories here are frankly callous.
The knowledge of doctors and nurses nurses varies widely as do their personalities - it seems pot luck if we get informed, sympathetic treatment. Some is very good, let's not forget that. But some is very poor, and that's where things need to change.
We have some very knowledgeable, determined people on here who are prepared to research, learn and try and take control of their own conditions. But not everyone is like that. Thank goodness that you folks 'in the know' are here to help level up the playing field so everyone gets a more equal chance of managing our condition. It shouldn't be down to you, but at the moment it is.
Mine was sort of in the middle and I genuinely think they did their best for me - limited somewhat by the guidelines within which they are obliged to operate (diet / medication). I won't say any more till I've had chance to speak with them after my next tests.
Overall I believe that education and knowledge is the key and it's pretty obvious there isn't enough of either.


I think I have to agree with this

A few, a tiny minority of us have had a good experience on dx. I did not. Luckily I found this place.

I did not have a second blood test. Nor was I offered retinopathy check until I asked for it. I was told about the xpert course and referred in june. I have been told I might be on one in February if there is a space and a year wait is average in my area. It seems I had a very common experience.

I do wonder why its like this. All types of diabetes cause havoc, some quicker than others. The proper help at the beginning, particularly for t1d and insulin dependent t2d would save such heart ache.

It also seems such a false economy. A little concentrated help at the beginning would save so much money later on. No need to have kidney support if you manage better at the beginning.

Having said all that, I have no idea what can be done.
 

Tanmc

Well-Known Member
Messages
160
Type of diabetes
Type 2
I was told diabetic but they know what type and sent away being told to eat a plate half veg and a bit of meat and to take 2 glic in mornin and 2 at night. I have had loads of info on here so started low carb diet. I was in hospital last night at 2.4 reading I think too much glic
 

woodywhippet61

Well-Known Member
Messages
489
Type of diabetes
Type 2
Treatment type
Diet only
I was told diabetic but they know what type and sent away being told to eat a plate half veg and a bit of meat and to take 2 glic in mornin and 2 at night. I have had loads of info on here so started low carb diet. I was in hospital last night at 2.4 reading I think too much glic

Or too little carbs. Or the timing of when you take the glib and eat wasn't right for your body. (check back in your replies someone did mention that to you). It's a balancing act. Diabetes management is all a balancing act.
 

Grateful

Well-Known Member
Messages
1,398
Type of diabetes
Type 2
Treatment type
Diet only
The knowledge of doctors and nurses nurses varies widely as do their personalities - it seems pot luck if we get informed, sympathetic treatment. Some is very good, let's not forget that. But some is very poor, and that's where things need to change.

We have some very knowledgeable, determined people on here who are prepared to research, learn and try and take control of their own conditions. But not everyone is like that. Thank goodness that you folks 'in the know' are here to help level up the playing field so everyone gets a more equal chance of managing our condition. It shouldn't be down to you, but at the moment it is.

Excellent analysis. Diabetes is a complex disease. Eight months after diagnosis, I thought I knew quite a lot about it and then I found this forum. I have beeing trying to help people, and hope I succeeded, but some far more knowledgeable people politely corrected me when I got things wrong.

This forum is a wonderful resource but it is sad that it has to exist as a source of hard facts. (The emotional support is another aspect, and would justify the existence of the forum even if there were no medical aspect to discuss.)

It is also sad because, as someone who firmly believes in the scientific method and in the inherent professionalism and expertise of the medical profession, I have been considerably disappointed with how it approaches diabetes. This is a comment, not about my own individual case or my doctor, but about the whole approach.

My particular obsession in this regard is diet. Right away, my wife thought I should be seeing a dietician, after my GP said I should "avoid sugar and go on a low-carb diet" (no meds) without providing any details, or giving me a booklet, or anything. I did the research and (this is the USA) found out that my insurance company would pay for an educational course with a dietician. But it sounded like this would be run along the lines recommended by the American Diabetes Association, therefore not-low carb. So I did not do it.

Ultimately, much of diabetes medicine is "self-treatment" thus we have a lot of power in our own hands. The downside is that this also requires a lot of education and experience. At diagnosis, nearly all of us are starting from zero!!!

I did not have a second blood test. Nor was I offered retinopathy check until I asked for it. I was told about the xpert course and referred in june. I have been told I might be on one in February if there is a space and a year wait is average in my area. It seems I had a very common experience.

I did have the second test although my doctor failed to tell me about it until I asked (he ordered a second test on the initial sample, after seeing the first result). Retinopathy: as it happens, I had a routine eye test a couple of days after the diabetes diagnosis. I told the eye doctor, fearfully, "I have just been diagnosed with diabetes but don't know anything about it yet." She examined me and it was reassuring to be told there was no sign of retinopathy. Also, I did some reading about T2 online and decided to book an appointment with a podiatrist to get my feet checked. So by the time I saw my GP, the "diabetes MOT" was already all set-up.

Sorry, too long. It seems I am still "unloading" even nine months after diagnosis. That, too, is what the forum is for.
 
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Tanmc

Well-Known Member
Messages
160
Type of diabetes
Type 2
Or too little carbs. Or the timing of when you take the glib and eat wasn't right for your body. (check back in your replies someone did mention that to you). It's a balancing act. Diabetes management is all a balancing act.
I always feel like am being told off not great for my confidence. I am learning and it is all new to me. Keep being told you have been told this. Truth is it is balancing act and I think doing both led me to being low last night if one had to give I would rather have a healthier diet then be on medication
 

Element137

Well-Known Member
Messages
128
Type of diabetes
Type 2
I always feel like am being told off not great for my confidence. I am learning and it is all new to me. Keep being told you have been told this. Truth is it is balancing act and I think doing both led me to being low last night if one had to give I would rather have a healthier diet then be on medication
Its all very new to you at the moment so can understand why its a lot to take in, so don't beat yourself up, you are on a steep learning curve, don't be so hard on yourself for not taking everything in 100% at this stage, there is a lot to understand -