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New and not sure what to do

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Dory78

Newbie
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1
Hi, I'm a newbie as you might have guessed and I was diagnosed mid August despite having zero symptoms (I had gone to the gp for a routine smear test and she offered me an 'MOT' as she called it) I was diagnosed with T2 diabetes, high blood pressure and a possible thyroid issue (they want to retest me in a couple of months for that) My blood sugar at diagnosis was 7.2 and I have been prescribed metformin 500mg to be taken twice a day. I was having some serious issues with it particularly at night and my nurse sort of flippantly said well just take them both in the morning that's fine, so this is what I've been doing. The thing is I'm having some really worrying symptoms at night now, I wake up most nights drowning in sweat or shivering so hard my teeth are chattering and in the last few weeks I've been having what I can only describe as horrific nightmares which I wake from shaking, nervous, anxious etc. I have also been suffering from really bad itchy lower legs/feet from time to time as well.

My nurse is a 'do what you want' kind of nurse, I have been given zero info about diet, she just told me I needed to eat better, I haven't been given a testing kit but I understand this is normal, I mentioned I was having issues with my mental health and worrying constantly and her response was 'well you need to stop worrying' and she told me to go back if it gets worse, I asked what constitutes getting worse, she said 'well if you don't want to leave the house or talk to anyone' - yep that's right so I don't wanna talk to anyone or leave the house, yet I'm supposed to come to the surgery to let you know that's got worse?!!!! So I did what I could and googled everything above and it appears that nearly all my symptoms (including possibly the mental health ones) are caused/acerbated by very high or very low blood sugar at nights, but according to all the times I've been and she's tested me my blood sugar was fine! (I think it was 8.1 on one occasion and 9.6 on another but I had just eaten on the 9.6 one)

I've sent her an email today as I'm unable to get her on the phone basically asking if she will consider prescribing me a blood testing kit but if she won't what do I do? Should I buy one? Is it worth it? Am I doing the wrong things with my diet - ie eating at the wrong times, etc. I'm basically following slimming world and have slowly been losing weight over the past few weeks which is great, but I'm really struggled. I'll be honest I went into work today and basically burst into tears as I;ve had such a bad nights sleep and a horrendous nightmare which left me shaking (as in frightened, not as in low blood sugar) I hate my job anyway so that hasn't helped but I just don't know where to go or what to do?

I'm really sorry for such a long boring post as my first but I don't know where to turn?
 
I'll call on @daisy1 to send the info sheet that most type 2 newbies get. It will start you off thinking about diet etc. I can't help about the pills since every pill seems to affect different people in different ways. You must tell your nurse about everything and make a joint decision on what to do.
 
In answer to another of your questions, a blood testing kit is an absolutely essential item and as a type 2 you are very unlikely to be prescribed one. I did get mine from my nurse but that was a lucky shot since a rep had left it there. You may well have to buy one but it will be a very worthwhile investment.
 
When I was having similar problems with the Metformin I just stopped taking them - just could not cope with the side effects, and as I had a tester I could see that the low carb diet was working - it did take a long time for all the problems with the combination of Metformin and Atorvastatn to subside, but they seem to have gone now.
You can get a cheap meter and supplies mail order, and see how foods affect you.
 
Hi and welcome,

To answer your question about a blood glucose meter, yes, you need to buy your own. It is highly unlikely you will be prescribed one on the NHS. It is possibly the best thing you will do to help you, and without one you are working blind. You can use them to test when you are feeling rotten to check if you are high or low, and also you can use them to test your reaction to the foods you are eating. (Test before you eat and again 2 hours after first bite).

As for Metformin, it is very common to experience stomach issues. This is a link to the various potential side effects - have a look to see if any fit your symptoms. https://www.drugs.com/sfx/metformin-side-effects.html . I can see some of them there. There are many other medications your nurse could try you on, or you could discuss with your nurse about going without medication for 3 months to see if you can improve your blood sugar numbers by diet and a little added exercise, plus weight loss. It is up to you, after talking with your nurse or GP.
 
Hi @Dory78,

Welcome to the forum. Sorry to read that you feel so worried and left alone.

I have to echo the advice from my fellow forumites above -- get a blood sugar meter to find out whether blood sugars are high or low when you feel bad. Otherwise you are working in the dark.

For me, diet has been more important than medication to get my blood sugars down to a non-diabetic range.

Could you tell us what you typically eat in a day? Maybe we can help and make some suggestions for more bloodsugar-friendly substitutes?

Meanwhile take a look around the forum, especially the section on success stories. Ask away, if you have any questions. Members here are knowledgeable, friendly and helpful.
 
Dory78 said:
Hi, I'm a newbie as you might have guessed and I was diagnosed mid August despite having zero symptoms (I had gone to the gp for a routine smear test and she offered me an 'MOT' as she called it) I was diagnosed with T2 diabetes, high blood pressure and a possible thyroid issue (they want to retest me in a couple of months for that) My blood sugar at diagnosis was 7.2 and I have been prescribed metformin 500mg to be taken twice a day. I was having some serious issues with it particularly at night and my nurse sort of flippantly said well just take them both in the morning that's fine, so this is what I've been doing. The thing is I'm having some really worrying symptoms at night now, I wake up most nights drowning in sweat or shivering so hard my teeth are chattering and in the last few weeks I've been having what I can only describe as horrific nightmares which I wake from shaking, nervous, anxious etc. I have also been suffering from really bad itchy lower legs/feet from time to time as well.

My nurse is a 'do what you want' kind of nurse, I have been given zero info about diet, she just told me I needed to eat better, I haven't been given a testing kit but I understand this is normal, I mentioned I was having issues with my mental health and worrying constantly and her response was 'well you need to stop worrying' and she told me to go back if it gets worse, I asked what constitutes getting worse, she said 'well if you don't want to leave the house or talk to anyone' - yep that's right so I don't wanna talk to anyone or leave the house, yet I'm supposed to come to the surgery to let you know that's got worse?!!!! So I did what I could and googled everything above and it appears that nearly all my symptoms (including possibly the mental health ones) are caused/acerbated by very high or very low blood sugar at nights, but according to all the times I've been and she's tested me my blood sugar was fine! (I think it was 8.1 on one occasion and 9.6 on another but I had just eaten on the 9.6 one)

I've sent her an email today as I'm unable to get her on the phone basically asking if she will consider prescribing me a blood testing kit but if she won't what do I do? Should I buy one? Is it worth it? Am I doing the wrong things with my diet - ie eating at the wrong times, etc. I'm basically following slimming world and have slowly been losing weight over the past few weeks which is great, but I'm really struggled. I'll be honest I went into work today and basically burst into tears as I;ve had such a bad nights sleep and a horrendous nightmare which left me shaking (as in frightened, not as in low blood sugar) I hate my job anyway so that hasn't helped but I just don't know where to go or what to do?

I'm really sorry for such a long boring post as my first but I don't know where to turn?
Click to expand...
Hey Dory, and welcome,

Your post isn't boring. What it is though, is a repeat of something people have said here often: they're completely left in the dark, fending for themselves. And I wish i'd found this place when i was feeling like that, because it would have shaved months off of practically everything! (From getting my sugar under control to batteling the trauma/depression that followed diagnosis). Glad you're here! There's a load of people here who have put their T2 in remission, in a variety of ways, so just read all the advise you're about to get, and see what works for *you*. Because diabetes is highly personal.... Your levels of insulin resistance, insulin response, and liverdumps are all unique to you. So that answers your question about a glucose meter: Is it worth it? Yes. Because there are no cut-and-dry guides to follow when you're unique. A meter will tell you whether a meal was good for you or spiked you, whether it needs modifying or dropping completely. (Long story short: check before a meal, and 2 hours after first bite. If your bloodsugar rises more than 2 mmol/l, the meal was too carby.). So, carbs. Type 2's can't process them back out again, and all carbs turn to sugar once ingested. That means foods that spike us are usually potatoes, bread, fruit (except for berries, in moderation), underground veggies, cereal, rice and corn. Stuff we can eat: bacon, bacon and bacon. Oh, and fish, other meat, cheese, full fat greek yoghurt, olives, nuts, leafy greens/above ground veggies, double cream, avocado, that sort of stuff. Check Dietdoctor.com for meal ideas if you like. But that's pretty much all safe to eat for a T2.
As for Metformin, it was hell for me personally... Never left the loo anymore. But on a low carb/high fat diet I could drop the meds (I was switched to gliclazide after a few weeks, but I didn't like that either), and the statins for cholesterol in about 3 months. All in all, if you change your diet, -slimming world is aimed at weight reduction, not bloodsugar reduction, I'm sorry!- and you're one of the lucky ones like me, you could be medication free, with a non-diabetic HbA1c (=blood glucose average of 3 months) in a matter of weeks or months. And a low carb/high fat diet will make you lose weight too.
Do get your thyroid sorted, because it does affect bloodsugar too. So if it needs tackling, do.
Your nurse isn't being very helpful with the "just stop worrying" thing. Mental issues wouldn't exist if it were just a matter of simply not having them! I'm an introverted borderliner with a clinical depression, and I didn't need T2 to kick me when I was already feeling down. So I was where you're at right now, and I wanted so badly for someone to tell me it'd get better. Guess what. I can tell you: IT GETS BETTER! Honest. It's not the deathsentence it sounds like, you're not 100% certain to get complications, you're not about to lose a leg, go blind, or lose kidneyfunction. There's been a LOT of developments in T2 treatment, and nurses, docs and specialists are often a little behind the times. But anything new, anything promising, will get discussed and tried here in no time. Which is why so many people here follow low carb high fat, keto, newcastle or mediterranian diets here: we try it, and stick with what works for us. For me, I'm hovering between low carb and keto at the moment, with a HbA1c firmly in the non diabetic range. My eyesight is fine, my kidney and liverfunction are improving, my cholesterol is down (in spite of all the bacon. ;) ), and I don't have never-ending infections anymore. And I thougth I was going to die. So. It can be okay, it will be okay... Just learn what you can, decide what's best for you, and go from there. And do get a meter. The night sweats might be false or true hypo's, (False means your body is used to being higher, so going on alert if you're not really having a hypo but are lower than it's used to. It'll feel like a real one though. A true one is anywhere under 4.0. A meter would tell you whether you need a few jellybabies/some juice). So a meter would help in that regard.

You'll be okay.
Good luck!
Jo
 
@Dory78

Hello Dory and welcome to the Forum :) Here is the Basic Information we give to new members and I hope you will find it useful. Ask as many questions as you want 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 235,000 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 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. Most of these are 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.
 
Hi Dory. I don't have much advice as I was only just recently diagnosed myself, but I know it's overwhelming at first. This forum has been so helpful. Welcome.
 
@Dory78, yes, absolutely do buy a meter and strips. Here is some info to help you get them as cheaply as possible. It is copied from a post by @Rachox:

"Here are some meters that are popular on the forum:

Taken from a post by @Bluetit1802 as she wrote it so nicely:


The most popular meters for self funding T2's are the Codefree and the Tee2 because the strips are much cheaper than other meters, and you need a lot of strips. You can't buy them in pharmacies.


Try here for the Codefree meter

http://homehealth-uk.com/product-category/blood-glucose/blood-glucose-monitor/


and here for the extra strips

http://homehealth-uk.com/all-products/sd-codefree-test-strips-to-be-used-only-with-the-sd-monitor/


There are discount codes if you buy in bulk.

5 packs 264086

10 packs 975833


The Tee2 is here

http://spirit-healthcare.co.uk/product/tee2-plus-blood-glucose-meter/


Don’t forget to check the box that you have diabetes so you can buy VAT free. (for either meter)"
 
Dory78 said:
The thing is I'm having some really worrying symptoms at night now, I wake up most nights drowning in sweat or shivering so hard my teeth are chattering
Click to expand...
I have no medical knowledge, but that sounds to me a bit like possible thyroid problems, which often go along with diabetes. Could you ask your GP about this? The other thing you might ask for is some kind of counselling sessions or CBT. A sudden diagnosis of diabetes is very hard for anyone and it sounds as if you could do with some support. Above and beyond what we can offer, but we'll do our best.
 
Welcome- I won’t add too much to the noise. Follow the advice above. Get the kit. Get control. Work out a plan - one day at a time: follow it. Don’t beat yourself up. It will be hard but will get easier sooner than you think.
We are on your side. Ask questions- you will get more answers than you expect.
Or.... you can just vent. This is an ok place to say out loud what you can’t say elsewhere (except the naughty words).
 
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