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My world turned upside down in 5 months.

tmaz

Member
Messages
5
Type of diabetes
LADA
Treatment type
Insulin
Hello everyone. Sorry this post is going to drag on but if you do manage to read it to the end....thank you.
Last December I went for a routine eye test. Something suspicious was seen behind both retinas so urgent referal to hospital. My hospital visit last 45 minutes and ended with you can not drive and in 2 years youll be blind, goodbye...Distraught wasn't even close. Im 44 have 3 daughters aged 11, 9 & 8 omg...

Hubby wouldn't have it and luckily a friend of his knew a PA of a top eye specialist in london and all my details and results where sent to him as he agreed to look at my case. After 2 days he called and asked if i had been tested for diabetes (at this point i hadn't) so requested that I be tested, which came back positive Type 2
So then im put on metformin 500g x 2 twice a day and referred to hospital. 3 weeks later at hospital i was also put on Lantus injection 6 units at night. Blood sugars have been ranging from 10 - 18.6 after increasing lantus to now 12 and complete overhaul of my diet blood sugars still high 10 - 15. my diabetic nurse thinks we may have to change type of insulin to Novo Rapid? So need to be seen by diabetic consultant when I'm back of holiday.

10 days ago I had a red mark on my right shin (very close to) which i thought i had just knocked somehow. Ignored and ignored came away to norfolk for a break it got more and more painful and swollen so much that yesterday I begged hubby to take me to walk in centre as the pain was unbearable. Luciky i was seen straight away and told it was cellulitis and it was an infection under the skin due to poorly controlled diet prescribed antibiotics and strong painkillers if not going down in 48 hrs to return.

HOLD ON RECAP... 5 months ago my life was plodding along normal. NOW im diabetic Injecting (forgot to mention phobia off needles) still not under control, told i couldnt drive n would be blind in 2 years (still under investigation at ucl london), have got high blood pressure now on medication got it down too 165/100 and now got an infection in my leg what is caused by my diabetes. Please can anything else go wrong....

Rant over, if you stayed with me till the end. Thanks for reading
 
Tmaz, well , from where you are now things look bad, but please take heart, diabetes is not the endless spiral down to ill health and death
In my case i was seen by my doctor who said " yes your t2 diabetic take these pills lose some weight and avoid sugary things"
Well that was three years ago and at that time i was 16 st 8 lbs and had bs's of 28.6 i was in a right mess and the advices from the nhs just was not working, then back in sept14 i found this forum and with the help of the posters here slowly regained control of my bs's and by lchf regime my weight has dropped to today's 12st 12 lbs bs's averaging 5.0 now and i'm alot happier knowing that i can control my illness now.
@daisy1 will be along to give you the info for new posters . Please ask as many q's as you like , and have a good read around here,please keep posting and let us know how we can help. ::))
 
I would just like to say welcome too @tmaz, and agree with @Clivethedrive, you will get plenty of good advice here.
Change in diet can make a big difference. Especially reduce carbs.
Keep posting and asking questions.
 
Hi and welcome!

Cellulitis hurts. A colleague had it years ago, then a recurrence recently. Sounded awful.

The wonderful thing about this forum is the support and advice you get. And the welcome. :)

Diagnosis always hits like a ton of bricks and takes a while to get over, but you do. And this forum really helped me.

You will often find it said here that controlling type 2 is 80% diet, and 20% medication and exercise.

What dietary advice have you been given by your doc so far?
 
Hi and welcome!

Cellulitis hurts. A colleague had it years ago, then a recurrence recently. Sounded awful.

The wonderful thing about this forum is the support and advice you get. And the welcome. :)

Diagnosis always hits like a ton of bricks and takes a while to get over, but you do. And this forum really helped me.

You will often find it said here that controlling type 2 is 80% diet, and 20% medication and exercise.

What dietary advice have you been given by your doc so far?

Yes, I used to get cellulitis a lot before my blood glucose was better controlled. Not anymore though. I would not wish cellulitis on my worse enemy. It is agony.
 
Thank you think it was a complete rant. Ive seen the dietician and she has told me to count my carbs. Im very active with 3 children and 2 dogs, also work in a residential care home. Ive been told my bmi is 25 and it should be 23-24 so carbs off 150 per day.
 
Hi and welcome to the forum tmaz.

As Clive says, hopefully Daisy will be along shortly to give you some basic advice that you should find useful, take care.
 
Hi & Welcome @tmaz nearly all has been said above.

You need to stay around and see what others are doing pleased to see the DN has suggested looking at & reducing carbs, but you may initially have to look a even higher reductions on the carbs to get your sugars under control initially.

Neil
 
Just commenting on eyes / sight issues, as others have covered other issues.
When hospital said not to drive, did they mean not drive home, because you'd had eye drops which open iris so doctors can examine retinae properly, but mean you can't focus until effects wear off after a couple of hours? Or did they mean you can never drive ever again? The "you'll be blind in 2 hours comment" - was that actually, "unless you get diabetes and blood glucose levels under control, there's a fair chance you will lose some eyesight, so that you won't be allowed to keep your car driving licence"?
I'm guessing, but if what the optician saw was retinopathy, this can improve, even disappear completely, with better blood glucose control. When you didn't know you had diabetes, there was no way for you to do this. Now you know, you can take control, with diet, exercise and medication. You body weight / BMI is fine, so you don't need to address that, unlike about 80% of people who are overweight when they are diagnosed with type 2 diabetes.
 
Hi and welcome!

Cellulitis hurts. A colleague had it years ago, then a recurrence recently. Sounded awful.

The wonderful thing about this forum is the support and advice you get. And the welcome. :)

Diagnosis always hits like a ton of bricks and takes a while to get over, but you do. And this forum really helped me.

You will often find it said here that controlling type 2 is 80% diet, and 20% medication and exercise.

What dietary advice have you been given by your doc so far?
Thank you Brunneria. Dietary advice was 3 meals a day. Count the carbs and watch the sugar. 3 meals consisting of not more than 50 carbs per meal. (I do eat a lot of fruit and veg.) White meat and fish (which i hate fish) and try to include starchy carbs as they'd give me energy.
 
Just commenting on eyes / sight issues, as others have covered other issues.
When hospital said not to drive, did they mean not drive home, because you'd had eye drops which open iris so doctors can examine retinae properly, but mean you can't focus until effects wear off after a couple of hours? Or did they mean you can never drive ever again? The "you'll be blind in 2 hours comment" - was that actually, "unless you get diabetes and blood glucose levels under control, there's a fair chance you will lose some eyesight, so that you won't be allowed to keep your car driving licence"?
I'm guessing, but if what the optician saw was retinopathy, this can improve, even disappear completely, with better blood glucose control. When you didn't know you had diabetes, there was no way for you to do this. Now you know, you can take control, with diet, exercise and medication. You body weight / BMI is fine, so you don't need to address that, unlike about 80% of people who are overweight when they are diagnosed with type 2 diabetes.
Thank you CopePod. Sorry typo error it should have been 2 years. Sunce i have been to London the consultant has told me i have a blind spot on both eyes behind the retinas. He suspected it is MIDD Maternal Inherited Diabetes and Deafness i am waiting in a genetic blood test to come back to confirm. He has now referred me onto moorfields for further testing.
 
Thank you Brunneria. Dietary advice was 3 meals a day. Count the carbs and watch the sugar. 3 meals consisting of not more than 50 carbs per meal. (I do eat a lot of fruit and veg.) White meat and fish (which i hate fish) and try to include starchy carbs as they'd give me energy.
Hi Tmaz. welcome. Cannot add much to what's been said but be careful of the fruit. It's not 'free' to diabetics. Fructose is a sugar.
 
Hello and welcome to the forum. Sorry to hear of your news, especially your eyes. Just wanted to wish you all the best for the future.

Take care

RRB
 
Thank you Brunneria. Dietary advice was 3 meals a day. Count the carbs and watch the sugar. 3 meals consisting of not more than 50 carbs per meal. (I do eat a lot of fruit and veg.) White meat and fish (which i hate fish) and try to include starchy carbs as they'd give me energy.

It is the starchy carbs for energy I would be wary of.

I followed that advice before I became diabetic. I gained a lot of weight and became diabetic! Yet still the medics were saying I must be eating rubbish. (They seem to fixate on Mars bars and takeaways for some reason). It was only when I started to work out for myself what was causing raised blood glucose that I found a solution.

Unfortunately, many have found the standard NHS advice of starchy carbs at every meal makes things worse.
 
Hi, I'm so sorry that you had to take on board all this over such a short time.

If the results of genetic testing confirm MIDD , it isn't T1 or T2 diabetes and is different from either of them In some cases what people with T1 or T2 have found is good for them, might not necessarily be the best thing for you. For example your dietitian's advice on your energy needs may be very much targeted at your individual needs.
If you do start to take Novo rapid, this is an insulin taken before meals. You dose according to the carbohydrate content of the meal and it should stop your glucose rising too much after the meal.
There have been a few other people with MIDD on the forums but not many as it's quite rare .I think that there is a post somewhere with lots of links to useful resources . At the moment though, I suspect that it's better to wait and find out what info your specialist gives you. He/she's certainly on the ball to have ordered the tests.
 
@tmaz

Hello and welcome to the forum :)

You have got some good advice already and this should help you to get your diabetes under control which is all important to your eyes. To help you further, here is the information we give to new members and I hope you will find it useful. Ask all the questions you need to and there is always someone who can 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 over 140,000 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-and-whole-grains.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 bloodglucose 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.
 
Most of ypur probs will be from high levels..
The sooner you get put on to Novorapid and get your doses sorted the better..
 
Thank you CopePod. Sorry typo error it should have been 2 years. Sunce i have been to London the consultant has told me i have a blind spot on both eyes behind the retinas. He suspected it is MIDD Maternal Inherited Diabetes and Deafness i am waiting in a genetic blood test to come back to confirm. He has now referred me onto moorfields for further testing.

Sorry, it was my type saying "2 hours". MIDD is very specific, and if that's what you have, as Phoenix has already said, you need very specific individual advice, not generic information for newly diagnosed diabetics. Hope Moorfields can help find out cause, treatment etc - as one of UK's leading eye hospitals, they look after far more people with specific genetic conditions than regular hospitals.
 
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