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Angry Pre-Diabetic now full-blown T2.

LyndaC

LyndaC

Member
Messages
10
Location
West Bletchley, Milton Keynes
:x

Where do I start....
Ok, Hi my name is Lynda, I'm 54 and I live in West Bletchley, Milton Keynes (yes the place with the concrete cows).

I was flagged as pre-diabetic in May and given the advice of - go away, increase your exercise (ok that's fair comment, though Osteo-arthritis makes it very uncomfortable even painful at times)

Follow this diet, what you're currently eating is good but add more carbs to each meal (but I cut my carb intake, cos it makes me gain weight, retain water etc) - so I went back to adding carbs back into each day/ sometimes meal (small amounts)

I was very concerned that monitoring of my bg seemed to be limited to the nurse doing a test in 3 months time and then annually - and my health appeared to me to be a hit or miss kindof thing depending on the results 3 months/ 1 year down the line ( a bit late to my thinking)

After reading your posts on here for a while and doing my own research (plus a couple of bouts of not feeling too grand following some of my meals) I went back to see the GP and asked about testing and getting a meter?! :lol: Yeah, right!

My GP told me they don't support testing by T2's except in extreme cases where they are not maintaining their bg/ health/ weight or are not understanding how to (and only then in very extreme cases)

Sooo.... I bought my own meter, buy my own test strips and keep my data on 'MyLifeStyle' -

I returned today for my 3 month HBA1c report and follow-up ( I met the diabetic nurse, lovely lady) And at the beginning of our appointment she appeared to be understanding (nay even supportive) for a few seconds of self-testing....then I happened to mention my previous discussion with the GP about meters and self-testing and it not being supported by the surgery........ And guess what?! Yep....she changed her tune (I'm not imagining it, seriously I am sure she was in support then changed to support the GP, admiral that she is loyal you might argue, but its to my detriment)

She told me she is not dissing my self-testing but "I want you to stop"!

"I want you to go away increase your exercise regime; lose weight and cut out sugars!" (I don't add sugar to my food anyway, I use sweetener if needed; so the only sugar is what is naturally in food....I rarely use processed foods)

You won't get prescriptions for the strips and the are very expensive to buy, we don't want you self-testing, it doesn't help - "Oh but I found it helpful, it made me feel I was in control of what effect food I ate was having on my bg/ body"
"No, it does't work like that!" "It isn't a matter of eating, say some meringue, then pricking your finger and saying that meringue was no good for me"

:?

Isn't that exactly what the meter is for - I told her I have been testing a) on waking and b) after my evening meal (with the occasional test during the day say before I eat or following some good, yummy (no I mean bad food)

I have been told in no uncertain terms to stop testing!

I go on holiday in little over a week, do I declare Diabetes, do I take my meter etc (I had planned to, but if they tell me to stop how do I get a letter to authorise taking my kit with me? And I need one....don't I?)

What about my travel insurance, I was asked if my diabetes was stable - I said no, was that wrong, it's not is it?

I was told by a friend T1 that 'heat' could affect my bg ( I had told him I had been feeling unwell last time I went away) - is this right?

Can I change Drs if I can find a practice that supports testing, and if so how do find this miracle place? (maybe just ring them all and ask?)

I'm sorry for the epic....I was just so angry and lost and frustrated, and confused - who should have primary care of 'my body'?

Thanks for listening/ reading
 
Hi Lynda and welcome to the forum :)

I'm afraid that the advice you have been given is not very good. First of all, you need to cut down on your carbs and not increase them. Secondly, you do need to test - they don't want you to because of a matter of cost. Testing is the only way to find out if you are eating the best things for your diabetes by testing after meals as explained below.

Here is the information we give to new members and I hope this will help you. Ask all the questions you need to as someone will always be able to answer you.


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 30,000 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

Another option is to replace ‘white carbohydrates’ (such as white bread, white rice, white flour etc) with whole grain varieties. The idea behind having whole grain varieties is that the carbohydrates get broken down slower than the white varieties –and these are said to have a lower glycaemic index.
http://www.diabetes.co.uk/food/diabetes ... rains.html

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

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.
----------------------------------------------------------------------------------------------------------------------------------------------------

Please sign our e-petition for free testing for all type 2's; here's the link:
http://www.diabetes.co.uk/petition/

Do get your friends and colleagues to sign as well.
 
Hi I understand your frustration and anger. I've been in exactly the same situation as you, and as you will find this seems to be the general lack of care we get. It's all to do with money , not patient health.
You need to test, and keep testing to control your bm's. It's impossible to achieve control by seeing a DN once in a blue moon.

I tried adopting the nhs diet, and had to come off it within 10 days as my blood sugars went through the roof. I actually took graphs of my blood sugers for nhs and low carb diets and ask my Doctor which one he wanted me to follow. He couldn't defend the NHS diet and had to conceed. He did try to say I was not following the NHS guidelines properly. I presented a full list of all meals I had over the period with carbs , protien and fat calculated. He shut up at that point.

Sorry for my rant. With regards to taking your meter on holiday with you. I've never had a problem , put it in your case, and make sure you take an adequate supply of test strips with you. Buy them off the internet as they are much cheaper than the local chemists .

Best of luck, and keep up what you know is right for you. It could well be saving your life!!
 
I agree with all that's been said. The meter isn't a problem; if you were a type 1 taking needles it would be different, but a meter is fine. Don't take it in your hand luggage if you fly in case they get funny about the "stabber". You don't need it when travelling; just handy nwhen you get there.
You ARE stable as a diabetic. What they mean buy "unstable" is regarding insulin dependant diabetics, or those on certain other meds, having hypos. You DO need to tell your travel insurance people though as otherwise the insurance could be deemed invalid under non-disclosure rules.
You CAN change doctors, but you're unlikely to find one who openly supports testing for type 2's. They are encouraged not to because of costs. The best you can hope for is a doctor who listens. Then, take in a graph of your results after eating and testing, (and changing diet accordingly), let them see how much your HbA1c has come down, show them how you did it and they might then prescribe strips.
Sadly, you got the same rubbish advice that most of us did on diagnosis. If it helps, here is my approach :-
In general terms you will need to reduce the total number of carbohydrates you eat per day. All carbohydrates turn to sugar when we eat them, and no type 2 diabetic on diet only, or on diet and metformin only, can control their blood sugars (BGs) without controlling their carb intake. Even those on strong medication normally choose to control their carb intake to keep the level of medication they take down. The total number of carbs per day you can eat depends on how advanced your diabetes is. It’s perhaps worth starting at about 50% of normal levels for a non-diabetic then adjusting up or down according to how you get on. So that means eating 150 grams of carbs per day for a man, 125 for a woman. You can read the total carb content of food under “nutritional info” on the packet or wrapping, or look it up on the internet for loose food. Just google “carb content..”
You also need to stop or reduce the bad carbs; that is the starchy ones that make your BG go up quickly.
So obviously no sugar or glucose! But also no white bread, white rice, pasta, flour products like pastry, cake and batter. You can eat a little basmati rice, wholewheat pasta or the tri-color pasta fusilli ones in small quantities. Boiled new potatos (again not too many) are OK but not old pots mashed, boiled or in their jackets. (Roast is not so bad, the fat slows their absorption and conversion to glucose in the blood) Amongst other veg, parsnips are about the worst for BG, and carrots not great but ok in smaller amounts.
Multi grain bread (not wholemeal) is not SO bad, but lots of us eat Burgen soya and linseed bread from tescos and sainsburys, although all bread should be in limited amounts.
All fruit has carbohydrates, and needs to be included in the amounts of carbs you eat in a day. For most people, bananas are about the worst for pushing our BG up and berries (like strawberries, raspberries etc) are the least bad.
No sweeties!
Exercise is important. I tend to exercise about an hour after eating when I know my BG will be peaking. This helps to bring it down quicker and further. I do ten minutes hard work on an exercise machine, but you could run up and down stairs for ten minutes or go for a brisk walk.
Returning to types of food and quantities of carbs - you can only find out how many you can eat by testing. Most type 2’s are not given access to testing equipment, so you should get your own – although try arguing with your Doc that you want to manage to NICE guideline blood sugar levels, and can’t do that without testing! If you have to buy a meter, they are cheap and most manufacturers will give them away for free. They make their money on the strips you have to use! So go for the meter with the cheapest testing strips. The SD Codefree available on the internet is about the cheapest at the moment. Some people test before and after eating, on waking (fasting test) and before bed. But if you have limited strips because of cost, the key to me is testing 2 hours after eating. If your BG is above, say, 7.8 at that stage, you need to cut down on the carb content the next time you have that meal. Test after various different meals and you soon get to see a pattern of what you can and can’t eat, and in what quantities. Keep careful records of what you ate and when, together with the result, so you can refer back at a later date. You can then reduce your testing. I said “below, say, 7.8” because NICE guidelines are below 8.5 but most of us think that’s a little high. 7.8 is the max. level at 2 hours after eating that a non-diabetic normally gets to so is perhaps a better target. Some then set progressively lower targets.
Do ask lots of questions; there is normally an answer on here. The more you get to learn about your diabetes, the better it will be.
Good luck!
 
Thanks for responding so quickly and pretty positively :thumbup: daisy1, paragliderpete and grazer - Basically I just nod at the health officials sagely and do my own sweet thing (or should that be healthy thing? :think: )
 
Hi. Yup, just smile and keep quiet when at the doctors. Don't discuss diet or testing as so often they haven't a clue. Just offer your feet for tickling and focus on the HBa1c test result. If it's below 6.5 then that's fine with perhaps some meds. At 7 you should definitely be on some tablets and discussing exactly which meds to take. Keep doing what you're doing and your meter will guide you on the best foods. The NHS can't tell you to stop testing; how patronising to even try to tell you. As Grazer says travelling is no problem; I always pack my meter in my main luggage. Travel insurance is also not a problem; just declare the T2 and that's it.
 
Hi Lynda and welcome :)

Your story is remarkably similar to my own especially the "your pre-diabetic, go change your diet and eat loads of carbs, oops..."

Anyway I would suggest you follow Grazers excellent advice as that's what I did when I arrived and although I still have T2 I do now have the blood sugar levels of a healthy non diabetic, normal cholesterol and blood pressure levels and have lost loads of weight.

I think you have every right to be very angry (I know I was) and there must be thousands of diabetics around the country who have also fallen for the same rubbish advice. After two lots of hBA1c's and other tests since swapping to a low carb lifestyle and showing excellent results that couldn't be argued with my gp and dsn have become very supportive and did start to prescribe me some test strips but I had to fight for them.

Good luck and keep asking questions at least you've arrived here and can now get your life back under control.

Take care

Steve
 
I was told two years ago I had impaired glucose tolerance and told to follow the "approved" low fat diet... they were far more concerned with my cholesterol that the fact that I might develop diabetes.

Back at the beginning of April I was then told I was pre-diabetic and given some leaflets and given an appointment with the DSN who again obsessed with cutting out saturated fats and how my diet had to have carbs in it, but to cut back on the fat and sugar... apparently, they're under the belief that fat in the diet causes insulin resistance and that I only had to worry about sugar and to eat complex carbs...

Within the month, I had had the second fasting blood test and they then declared me to be actually diabetic... I blame the diet they had me follow... I was going low-fat and lite everything, eating wholemeal everything I could find, getting my five portions a day and going further than that with fresh fruit... blindly not realising just how many extra carbs were in those low-fat and lite products and that the carbs in the wholemeal stuff and the fruit was doing damage...

And yet again, the DSN is pressing me to follow the "approved from on-high" low-fat diet and it's the same with the DESMOND course as well.

I swear they're going to damage a lot more people with the consequences of this ridiculous "healthy" diet they keep telling us to follow before the sheer weight of evidence of damaged people causes them to drop their current dogma.

Back at the end of last month, I had a side discussion with my GP while doing a blood pressure follow-up appointment and he got quite upset with me for ignoring their "diet" and going reduced carb with increased saturated fats... I said we'll see at the next set of results then. He also was not happy with me self testing as well (bought my own meter and get my own strips). Apparently they don't see why T2's on diet should even test at all despite the fact that their diet is seriously damaging people who follow it in good faith like I did whilst I was in my impaired glucose tolerance phase.

According to them diet only T2's would only get upset if they were testing as they can't do much about the high readings. I countered that I would then know that that particular food had carbs in it that didn't work well with me and also to go out for a half hour walk to help reduce my level.
 
Hi Lynda, Welcome to the forum, a place full of people just like you!! Everyone has already given great advice, I just wanted to say that I have just read Gary Taubes - What Makes Us Fat - which I found revalatory. I feel like buying copies and give them to my Dr and DN!!

You have primary care of your body, if you want to test and you bought your own meter then no one can stop you!! I just got back from hols and took my meter in my hand luggage, they didn't even look at it ...
 
A welcome from me too. I honestly don't know how I would feel if I were in your shoes, but I went from normal to diabetic in the time it takes to have a consultation with a GP. I did suspect I was going to get the diagnosis, but it still side swiped me when it was actually 'official'. Good luck and try not to worry, ask questions and we will all help where we can.

Joanna.
 
LyndaC said:
:x

Where do I start....
Ok, Hi my name is Lynda, I'm 54 and I live in West Bletchley, Milton Keynes (yes the place with the concrete cows).

I was flagged as pre-diabetic in May and given the advice of - go away, increase your exercise (ok that's fair comment, though Osteo-arthritis makes it very uncomfortable even painful at times)

Follow this diet, what you're currently eating is good but add more carbs to each meal (but I cut my carb intake, cos it makes me gain weight, retain water etc) - so I went back to adding carbs back into each day/ sometimes meal (small amounts)

I was very concerned that monitoring of my bg seemed to be limited to the nurse doing a test in 3 months time and then annually - and my health appeared to me to be a hit or miss kindof thing depending on the results 3 months/ 1 year down the line ( a bit late to my thinking)

After reading your posts on here for a while and doing my own research (plus a couple of bouts of not feeling too grand following some of my meals) I went back to see the GP and asked about testing and getting a meter?! :lol: Yeah, right!

My GP told me they don't support testing by T2's except in extreme cases where they are not maintaining their bg/ health/ weight or are not understanding how to (and only then in very extreme cases)

Sooo.... I bought my own meter, buy my own test strips and keep my data on 'MyLifeStyle' -

I returned today for my 3 month HBA1c report and follow-up ( I met the diabetic nurse, lovely lady) And at the beginning of our appointment she appeared to be understanding (nay even supportive) for a few seconds of self-testing....then I happened to mention my previous discussion with the GP about meters and self-testing and it not being supported by the surgery........ And guess what?! Yep....she changed her tune (I'm not imagining it, seriously I am sure she was in support then changed to support the GP, admiral that she is loyal you might argue, but its to my detriment)

She told me she is not dissing my self-testing but "I want you to stop"!

"I want you to go away increase your exercise regime; lose weight and cut out sugars!" (I don't add sugar to my food anyway, I use sweetener if needed; so the only sugar is what is naturally in food....I rarely use processed foods)

You won't get prescriptions for the strips and the are very expensive to buy, we don't want you self-testing, it doesn't help - "Oh but I found it helpful, it made me feel I was in control of what effect food I ate was having on my bg/ body"
"No, it does't work like that!" "It isn't a matter of eating, say some meringue, then pricking your finger and saying that meringue was no good for me"

:?

Isn't that exactly what the meter is for - I told her I have been testing a) on waking and b) after my evening meal (with the occasional test during the day say before I eat or following some good, yummy (no I mean bad food)

I have been told in no uncertain terms to stop testing!

I go on holiday in little over a week, do I declare Diabetes, do I take my meter etc (I had planned to, but if they tell me to stop how do I get a letter to authorise taking my kit with me? And I need one....don't I?)

What about my travel insurance, I was asked if my diabetes was stable - I said no, was that wrong, it's not is it?

I was told by a friend T1 that 'heat' could affect my bg ( I had told him I had been feeling unwell last time I went away) - is this right?

Can I change Drs if I can find a practice that supports testing, and if so how do find this miracle place? (maybe just ring them all and ask?)

I'm sorry for the epic....I was just so angry and lost and frustrated, and confused - who should have primary care of 'my body'?

Thanks for listening/ reading
Click to expand...

Hi Lynda

Welcome, I live in Milton Keynes, north side (right near the concrete cows) :D
 
Thank you all so much for the warm welcome and messages of support :D

I have already decided to carry on, it's my body, I should have primary control if it seems to be working for me.

Another question for you guys; I have just been a good girl and done about 15mins of my own kindof aerobic exercise - I had eaten about 30 mins before and took a reading 5 mins after stopping....its gone up from a waking reading of 7.9 to 11.1 :? is it usual to go up after exercise?

I'm waiting with bated breath here...going blue around the gills :silent: :sick: (ok I know thats' green)
 
Well done Lynda, exercise will really help. In my experience if the intensity of the exercise is quite high it can have an impact on my BG. So if I go for a power walk which I do most evenings after dinner it brings my BG down nicely. But when I play 2 hours of Badminton sometimes I see my BG rising. I have been advised to test 2 hours after the meal, you might be testing a little early. If that is below 7.8 or even 8 then you are on the right track.
 
LyndaC said:
Another question for you guys; I have just been a good girl and done about 15mins of my own kindof aerobic exercise - I had eaten about 30 mins before and took a reading 5 mins after stopping....its gone up from a waking reading of 7.9 to 11.1 is it usual to go up after exercise?
Click to expand...

Exercise CAN send it up. If BGs get low, our liver responds by sending Glycogen (effectivelt glucose) into our blood to bring it up again. Trouble is, the way you tested, you don't know if the exercise sent it up. You exercised after eating, but it was also only 30 mins after eating. SO, would the reading have been lower if you hadn't exercised, or would it have been evn higher?
You need to treat it like a planned project. Test before you eat, eat, then test 2 hours later (not 30 mins) after doing NO exercise. On another day, follow the same routine, same food, but this time exerdcise after the meal before testing at 2 hours. Now you can compare the 2 sets of results and draw conclusions. Keep careful written records of it all.
Eventually, you'll know exactly what helps and doesn't, what exercise is better than others,(some find long steady exercise better than sort sharp bursts. I find ten minutes of hard exercise an hour after eating is best), what food is best and when (some can eat no carbs in the morning, but that's my best time to get carbs in!) Ultimately, you won't need to test nearly so much because you'll have the picture of YOUR diabetes. You'll just need to check now and again to ensure it's not changing, or if you try something new.
 
I am T1, when I was diagnosed 15 years ago there was loads of help and support for me. I think it is shocking that you have received so little support, I would have thought doctors would be delighted to treat anyone who wants to help themselves not tell them to stop, shocking, just shocking.
 
Lynda
your DSN cannot forbid you to self test. It's YOUR choice, but I suppose she might make some things awkward for you.
if it becomes a real problem
Contact the Diabetes UK Careline and ask for support. They deal with loads of cases every year. Plus they have a set of info sheets on self testing and an advocacy department.
Hana
 
PS
test strips are much cheaper from the suppliers. Abbott Diabetes Care, who supply The Freestyle metes among others, Provide a superb service to patients. I didn't find Bayer as good and they are the only ones I've tried.
Hana
 
Its so sad, the missed opportunity to really get people on the right track and to avoid further damage to the pancreas.

It would be better to offer no dietary advice at all han tto advise them to eat MORE carbs.It is only natural for most newly diagnosed diabetics {T2 ] to believe that the HCPs know SOMETHIBG about the disease but , as many of us know this is not always the case.
We can't quite accept it for a while and before we know it find ourselves on stronger meds with pancreas shot o bits.

if only th condition could be taken seriously and treated aggressively in the beginning , instead of the "nanny knows best " atitude.

So many of us feel at first that we will overcome this thing. if we were given the tools or info to do so who knows what could happen?

Had someone offered me a chance o do the Newcasle diet on diagnosis I would gladly have done so and it would have been SO much better for me.

I speak as one who was given a meter and strips on diagnosis. Not that it helped much- we were told that we were testing purely
for the benefit of the Dr. I had to find his forum before i discovered the proper use of the meter.
It is really depressing hat HCPs are being paid to disseminate damaging advice.
 
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