Newly Diagnosed and Getting Bad Advice (I think)

stuart264

Member
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13
I was diagnosed as type 2 diabetic about 5 weeks ago and prescribed 500mg Metformin twice a day and that was it as thanks to "short staffing" I had to wait a month for an appointment to see the diabetes nurse at my GP and when I arrived at the appointment she was off sick and another nurse stood in for her and I suspect I have been given some really bad advice as she gave me a test meter and my blood sugar has been averaging at 11.9 over the last few days but I assumed that was normal as she told me that 10 was the right level, imagine my shock when I got told the right levels by the wife of a friend that's type 1 diabetic :(

I haven't been able to test for 3 days as I only just got the prescription for the test strips through because the cover nurse didn't do the paperwork, my blood sugar is averaging 11.9, has been as high as 17.9 and no lower than 9.8 could anyone advise what I should do especially with the coming back holiday as tempted to up to 500mg Metformin 3 times a day as that's what the patient information leaflet says is the dose over the bank holiday weekend as I suspect I have no chance of getting an appt in the morning at the doctors :(
 
C

catherinecherub

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Hello Stuart and welcome to the forum.

It seems the only plus to your visit has been to get a meter and test strips. Most Type 2's do not have this luxury. The rest of the conversation beggars belief. Have you been given any dietary advice?

Have a read through this link and it may help you, any questions then please ask. This advice has been compiled by the Forum Monitors for newly diagnosed.


viewtopic.php?f=20&t=17088
 

sugarless sue

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Welcome to the Forum,

10 !!! :shock: :shock: this one makes my blood boil ! :evil: This is the NHS 'dumbing down ' the NICE guidelines so that people don't get 'disheartened'. Obviously not worried about damage to health then ! ( Enough ranting)

Below is the basic advice that Ken and I give to new Diabetics. At the bottom you will see the recommended NICE guidelines for Bg ( blood sugar) levels. Hope these help. You are lucky BTW to get a meter and test strips, keep hold of them like gold. :D


Here is the advice that Ken and I, as Forum Monitors, usually give to newly diagnosed Diabetics. We hope that these few ideas gained through experience help you to gain control and give you some understanding of Diabetes. This forum doesn't always follow the recommended dietary advice, you have to work out what works for you as we are all different.

It's not just 'sugars' you need to avoid, diabetes is an inability to process glucose properly. Carbohydrate converts, in the body, to glucose. So it makes sense to reduce the amount of carbohydrate that you eat which includes sugars.

For more information on CARBOHYDRATE see here:

viewtopic.php?f=3&t=20306&start=0

This is NOT a low carb diet suggestion, just a reduction in your intake of carbohydrate. You have to decide yourself how much of a reduction will keep your blood glucose levels in control.

The main carbs to avoid OR reduce are the complex or starchy carbohydrates such as bread, potatoes, pasta, rice, starchy root veg and also any flour based products. The starchy carbs all convert 100% to glucose in the body and raise the blood sugar levels significantly.

If you are on Insulin you may find that reducing the carb intake also means that you can reduce your dose of insulin. This can help you to keep weight gain down as Insulin tends to make you put on weight and eventually cause insulin resistance. This should be done slowly so as not to cause hypos.

The way to find out how different foods affect you is to do regular daily testing and keep a food diary for a couple of weeks. If you test just before eating, then two hours after eating, you will see the effect of certain foods on your blood glucose levels. Some foods, which are slow acting carbohydrates, are absorbed more slowly so you may need to test three or even four hours later to see the effect that these have on your blood glucose levels.

Buy yourself a carb counter book (you can get these on-line) and you will be able to work out how much carbs you are eating, when you test, the reading two hours after should be roughly the same as the before eating reading, if it is then that meal was fine, if it isn’t then you need to check what you have eaten and think about reducing the portion size of carbs.

When you are buying products check the total carbohydrate content, this includes the sugar content. Do not just go by the amount of sugar on the packaging as this is misleading to a diabetic.


As for a tester, try asking the nurse/doctor and explain that you want to be proactive in managing your own diabetes and therefore need to test so that you can see just how foods affect your blood sugar levels. Hopefully this will work ! Sometimes they are not keen to give Type 2’s the strips on prescription, (in the UK) but you can but try!!

For TIPS FOR STRIPS see here:

viewtopic.php?f=20&t=19002&start=0

If you are an Insulin user in theory you should have no problem getting test strips.

The latest 2011 NICE guidelines for Bg levels are as follows:
Fasting (waking and before meals).......between 4 - 7 mmol/l...(Type 1 & 2)
2 hrs after meals........................no more than 8.5 mmol/l.....( Type 2)

2hrs after meals......................... no more than 9 mmol/l ......(Type 1)

If you are able to keep the post meal numbers lower, so much the better.

It also helps if you can do at least 30 minutes moderate exercise a day, it can be split into 10 min sessions to start with. It doesn't have to be strenuous.

The above is just general advice and it is recommended that you discuss with your HCP before making any changes. You can also ask questions on the forum on anything that is not clear.

Finally a few QUESTIONS TO ASK AT DIABETES CLINIC.

viewtopic.php?f=20&t=17091&start=0



Sue/Ken.
 

cugila

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Thanks CC and Sue........

10 mmol/l is what a group of us on an X-Pert Course were told recently. what a load of B$£&*^$% !!!

I took the DSN and the Dietician to task publicly over this ridiculous advice and explained to both that they were giving out information to people who were mainly newly diagnosed which was of NO help to them at all.

If NICE guidelines state for a T2 ......no more than 8.5 mmol/l.... 2 hrs after meals why tell people something completely different ? There were a few hurried glances but no coherent answers ! The following week they said they had discussed it amongst themselves and stick by a level of 10 mmol/l as a maximum figure........ :shock:

Their reason for that.......we don't want to to discourage people as they may have high levels already and it might depress them ! :roll:

It depresses me to see HCP's who are supposed to help us, making up the rules as they go along. What utter rubbish. We don't need to be treated like kids, protected and mollycoddled.....we need facts and straightforward advice. The sort of thing that Member's get on here........

The advice that will allow them to control their Diabetes, improve their Health and stop spending Billions on the treatment of Diabetes.......surely that has to be a plus !
 

ailz

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The idea of telling a high figure so as 'not to depress' someone, is a bit like being told - as I was - that you're a mild diabetic, or that your first heart attack isn't anything to worry about - as my father was. What do they teach specialist nurses? I'd rather be a bit depressed and know the facts than really depressed because I've got major problems caused by bad bg contro.

Ailz
 

anniep

Well-Known Member
Messages
561
My brother-in-law was told by his hospital, that al long as he kept his bg under double figures he was fine!
 

stuart264

Member
Messages
13
Thanks for the advice and links I will have a read through it all and post any questions I may have later, just pi**ed I found out yesterday, because I have my parents down for the weekend because I live by the coast, the temperature is though the roof and I feel hotter still because of the high blood sugar (just tested 12.0 :( ) Wonderful, great Easter weather for a change by the coast and I am inside with the curtains drawn because I feel like I am sitting in an oven, any hotter and you will find me naked in the fridge

Doctor phoned me back about 5:45 last night, told me to immediately increase my Metformin to 500mg 3 times a day and come in to see him after the bank holiday, he also said he is going to "have words" with the nurse in question over telling me the wrong meter reading as I was supposed to go to the doctors if my blood sugar was consistently high, it was but I didn't know because I got told the wrong meter reading.

As for not depressing people,( *********) I would rather have the facts and make my own decisions, its my life and lifestyle at the end of the day, and the only advice towards diet I received was to avoid eating bananas and grapes.
 

vadxb

Member
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8
stuart264 said:
Thanks for the advice and links I will have a read through it all and post any questions I may have later, just pi**ed I found out yesterday, because I have my parents down for the weekend because I live by the coast, the temperature is though the roof and I feel hotter still because of the high blood sugar (just tested 12.0 :( ) Wonderful, great Easter weather for a change by the coast and I am inside with the curtains drawn because I feel like I am sitting in an oven, any hotter and you will find me naked in the fridge

Doctor phoned me back about 5:45 last night, told me to immediately increase my Metformin to 500mg 3 times a day and come in to see him after the bank holiday, he also said he is going to "have words" with the nurse in question over telling me the wrong meter reading as I was supposed to go to the doctors if my blood sugar was consistently high, it was but I didn't know because I got told the wrong meter reading.

As for not depressing people, I would rather have the facts and make my own decisions, its my life and lifestyle at the end of the day, and the only advice towards diet I received was to avoid eating bananas and grapes.

I know how you feel and I have also had some bad experiences with diabetes nurse. Many of them tend to be very old school type and not very serious about diabetes. I have also followed the tips in this forum and they have been very very helpful.
 

spendercat

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277
Type of diabetes
Type 2
Treatment type
Diet only
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I too am recently diagnosed, and surprised by the casual approach to potentially serious condition. My nurse has vey nicely organised test strips for me, even though it took three weeks to sort out. To be frank, I can get them on the internet for £1.50 more than the prescription charge.

Sent along to newly diagnosed group, only to be given two hours of bog standard dietary advice. Is there anyone who does not know we are supposed to have 5 portions of fruit and veg a day? Our expert told us nothing about the different diets recommended for diabetics, she actually told the group that there was no point in testing, just follow a healthy diet with a starch at every meal and we would be tested every three months. Her reason? The tester strips cost the NHS an awful lot of money!

What a missed opportunity. She could have given us a reading list, she could have explained the principles of carbohydrate metabolism, she could have given us some useful website addresses. Half our group of newbies were already on Metformin - she could have explained that the right diet might reduce their need for this - some of them were suffering bad side-effects.

I was appalled at the casual assumption that we were all too dumb to take responsibility for our own bodies, and giving us any real information would merely confuse us. Most of the people in the room seemed at least as educated as she was!

You know what? I was too polite to say a word. I completed the feedback form like a lamb. How english can you get?
 

JohnJ

Well-Known Member
Messages
78
Type of diabetes
Type 1
Treatment type
Insulin
Hi All,

I too was diagnosed on 18th with level of 22.1!
As it was just before the bank holiday/s they gave me a testing kit and put me on Gliclazide 80mg. Told to eat hi-carb bread, potatoes and rice? Contrary to all the superb advice on this forum.

The hospital called on the Wednesday, to check if OK for the weekend. I said after taking the first tablet my level dropped to 13.8 early next morning. They told me to double the dose.

Since then it fluctuates from 12.7 to 17.1 on average.

Trying to change lifestyle and diet rapidly but as you all say very conflicting advice on good/bad foods.

Following advice on this forum, but everyone is different in the way they react.

Very distressing all this! Presume it is going to take time.

JohnJ
 

Unbeliever

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Messages
1,551
You will get very good advice from the forum monitors and others on here John .
Certainly it will take a little time. It is all very confusing at first.

Just one thing I would say, difficult as it you should try to relax as much as possible about it.

Easier said than done I know but stress will also cause your levels to rise. We have all beem there.
 

JohnJ

Well-Known Member
Messages
78
Type of diabetes
Type 1
Treatment type
Insulin
Unbeliever said:
You will get very good advice from the forum monitors and others on here John .
Certainly it will take a little time. It is all very confusing at first.

Just one thing I would say, difficult as it you should try to relax as much as possible about it.

Easier said than done I know but stress will also cause your levels to rise. We have all beem there.

Thank you Unbeliever. What may make everyone laugh, is that I have extreme needle phobia, so even using an Easy Touch to use with the meter, I can't bring myself to press the trigger!! Have to get my partner to press it.

I fiddled around so much the other day that I ended up stabbing myself in the thumb - still, result, got some blood anyway!

Thanks, JohnJ
 

Unbeliever

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1,551
I expect you are not the only one to hesitate to "press the button " someitmes. After a while it all becomes routine. Best not to think about it for too long!

II was given metformin immediately I was diagnosed and it caused problems with my eyes so I couldn't focus and my hands shook. I coudn't get the blood on the srip and by the time I did the meter had turned off and I had to do it all over again. Each attempt must have taken about 15 mins. This would have been bad enough at home but we had arranged to go on holiday , a coach tour of all things . Whatever I did and wherever I tried to test someone always managed to bump into me, bounce on the seat next to me. I don't think I had ever realised before how clumsy my husband could be! It was a nightmare.

At least after reading this forum you will know why you are testing. I only knew I was esting because the Dr had told me to so he could work out my medication.
 

Eiche

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JohnJ said:
I fiddled around so much the other day that I ended up stabbing myself in the thumb - still, result, got some blood anyway!

Thanks, JohnJ

HA! I had the same problem. I was using Accu-Chek Aviva which is meant to be the least painful meter to test your glucose with... I think they lied! LOL But I have to stab myself with a needle twice a day as well to administer Byetta.... It took me a half hour to finally do it, but I can tell you, it is not easy to go against the natural resistance to harm oneself and with your needle phobia I imagine it's even worse!!! :?
 

Unbeliever

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In my practice they can't understand why anyone wants to stick pins in themselves for self monitoring purposes } but would really like all the diabetics to be on insulin.

When I pointed out that this position was illogical I was met wih a blank stare. Perhaps they have been chosen to test the insulin nasal spray many must drean of. :lol:
 

SarahT

Newbie
Messages
1
It seems like we get the same reaction all over the world. I'm in South Africa and was diagnosed yesterday. My GP phoned me with the results and then all she said was I should see a dietician and collect a script for Glucophage. She didn't even want to see me. I phoned and booked an appointment later to see her because I had many questions. What really scares me at this stage is that she didn't say I have to test regularly. She has given me a months supply of the pills and then they will test me again after the course and then decide on the further dosage, so I'm taking the pills and will be going to the dietician as soon as I can, but I haven't a clue what my blood sugar is doing.
 

viviennem

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I may be wrong on this, but shouldn't Spendercat have an exemption from prescription charges if she's diabetic? I'm over 60 now so get them free, but when I was diagnosed with an under-active thyroid (and that's another story!) I became exempt from all prescription charges and had a card to say so. That was pre-diabetes and pre-60.

Otherwise there's an HC1 certificate, help with health care costs, which anyone on a low income can get, if you need it. I have one of those too, because either the optician or the dentist is not free for OAPs, and I can never remember which one :lol: .

Viv 8)
 

cugila

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viviennem said:
I may be wrong on this, but shouldn't Spendercat have an exemption from prescription charges if she's diabetic? I'm over 60 now so get them free, but when I was diagnosed with an under-active thyroid (and that's another story!) I became exempt from all prescription charges and had a card to say so. That was pre-diabetes and pre-60.

Otherwise there's an HC1 certificate, help with health care costs, which anyone on a low income can get, if you need it. I have one of those too, because either the optician or the dentist is not free for OAPs, and I can never remember which one :lol: .

Viv 8)


Not quite......spendercat's profile states she is on 'diet only'. You have to be on anti-Diabetic medication to get free prescriptions, unless there are some other qualifying conditions which you can claim the exemption for. Unless you live somewhere that all prescriptions are free. You don't get the exemption just because you are a Diabetic.
 

primmers

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Messages
175
All prescriptions are free in Scotland thanks to the Bill passed by the SNP administration on the back of the research and committee stage work done by Colin Fox of the Scottish Socialist Party. Just need to persuade them well motivated type 2's deserve testing strips on prescription.
 

Lauraann

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hi John
I was given this advice when first diagnosed 8 years ago and it is b****cks (sorry) I have since been told by my dietician that a reason why why hba1c levels are high is because of carbs, yet I was told to eat bread, pasta etc and to avoid sweets!!! Also metformin is usually the tablet you are put on first especially as gliclazide can cause weight gain and hypos (I think ). You are better off chatting to other diabetics and read discussions , not sying the health profession is no good just that some aren't clued up and I think most diabetic nurses attached
to a doctors surgery just have a little bit of diabetic training and they can they be called a diabetes specialist whereas I think it is much more complex than this
good luck x

I too was diagnosed on 18th with level of 22.1!
As it was just before the bank holiday/s they gave me a testing kit and put me on Gliclazide 80mg. Told to eat hi-carb bread, potatoes and rice? Contrary to all the superb advice on this forum.

The hospital called on the Wednesday, to check if OK for the weekend. I said after taking the first tablet my level dropped to 13.8 early next morning. They told me to double the dose.

Since then it fluctuates from 12.7 to 17.1 on average.

Trying to change lifestyle and diet rapidly but as you all say very conflicting advice on good/bad foods.

Following advice on this forum, but everyone is different in the way they react.

Very distressing all this! Presume it is going to take time.

JohnJ[/quote]