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scared and worried

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Lorri

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Hi, I am very scared newly diagnosed type 2. I was diagnosed at xmas and I think i am still in shock and almost certainly in denial. I am a petite 5' underweight (6' 2) but fit nearly 50 year old. I have always been conscious of my weight from in my early 21's mainly due to the my height, I felt if I was slimmer I would look taller :-). I've became more obsessed as I've grown older, to the point that I think most people thought I was anorexic....which I am not by the way, just very very careful. I exercise about 3 times a week, with classes and weekends I am either out on my bike or jogging. Anyway, a couple of years ago we had a health nurse come in to work and do a number of tests of which I took advantage. Everything was perfect :-) apart from my blood glucose was slightly raised....odd I thought as I don't eat sweet things?? so popped along to the docs as advised. He said it's very strange as I was very healthy and fit........but we'll keep an eye on it. Then just before xmas I noticed that I had lost weight ....about half a stone in just under 2 weeks!! this worried me and as I was just about to make an appointment to see the doc a letter came through the post asking me to book another blood glucose test. I wonder if this was linked to the weight loss? so I had the blood test done. A week later I called for the results and was told to make an appointment with the Diabetic nurse!!!! When I got in to her office and sat down, she began to tell me that my blood sugar levels were extremely high and that i was diabetic type 2.....my Blood sugar level was at 15!! She asked if it was in my family and I am not aware of it? I have checked since and no-one has confirmed there is. They don't seem to be able to make head of tail of it and I certainly can't ? since then i have been on the forum and read as much as I could to find out what could have caused it to happen to me? I have been on the Desmond course but as I suspected there wasn't anything I didn't already know. Basically it was aimed at people that are overweight and can change their lifestyle and make a difference to their BS. I can't improve my lifestyle anymore :-( ....They told me that I basically the medication that I am on (2 x 80Mg Glicazice daily) is probably not enough? I have been given a blood meter and strips and at first it was frightening how high my levels were.....around 16/17 and going into the 20's after food....and that seemed to be anything I ate! I am suviving on practically nothing....salads and meat mainly, the levels have come down but not enough...around 11 in the morning and by the evening 13/14. if i exercise i can get them down into single figures...my lowest was 5.0 after a 4 hour bike ride..... and I almost feel normal again...sadly it's not for long. When I look on the forum I see people saying that they think there levels are high and they are around 7/8....I would be ecstatic if I could get mine to that level and stay there. I am due for my hba1C in April and I am hoping that the meds will be increased ? or will I be given something else? I have heard that Glic can give you hypo's if you exercise so that's a bit of a worry? not that I can imagine ever getting that low! Some days I feel so depressed and can't see a light at the end of the tunnel. will I ever get control?... Where as before I chose to eat healthy, it's now not my choice...... I now CAN'T have whatever I like even if I wanted :-( and there was me thinking that when I get to an age where I am not so bothered about how I look that I can wallow in some lovely food!.... life's a *****!!
 
Hi lorri; I can understand your concern. I wasn't overweight either, and am type 2. However, my blood sugars didn't remain that high on a reduced carb diet. I wonder if in fact you are type 2. Mis-diagnosis is quite common. You could be a variation like late onset type 1. That would explain why your BGs remain high with good diet and exercise. I would insist on proper tests (which are available) to confirm your diabetes type so you can get the proper treatment. Don't worry if it means insulin for example - it's not the end of the world, and if it enables you to get in control then you'll feel so much better. Good luck, and INSIST on proper tests
 
Hello Lorri

Yes agree with Grazer, you seem to meet none of the criteria for a normal type 2 except your age. Your treatment so far sounds absolutely appalling and you deserve far better. Go back to your GP (not nurse) and insist that he / she does a c-peptide test and possibly a GAD test to confirm you are Type 2 as I suspect you are either what's called Type 1.5 LADA or even Type 1. If you have reduced you carbs and are taking Glic then if you were a standard Type 2 your blood sugars should have shown improvement pretty quickly. Did your GP ever do a urine test for things called keytones? Did you tell your GP you had lost weight when you were diagnosed as that is a classic sign of being Type 1 or 1.5. I would be appalled to find out that you told your GP these things and he didn't recognise what they could mean. Have you got a husband, partner or friend who could go with you to the surgery to help back you up?

If you get nowhere with your GP I would simply go to an A&E department and tell them you feel really ill and explain you have very high blood sugars and don't know why and importantly explain to them your initial symptoms.

Please let us know how you are doing. Your story is not that unusual to hear I'm afraid.
 
Hi Lorri,
Very similar story to mine I am afraid. I am late 50's, have been slim (underweight if anything) all my life and developed what i now have come to understand is type 1.5 about 3 years ago. Metformin made no difference, am currently on a low dose of gliclazide which is also making no difference and am expecting to go on to insulin in the very near future. Hoping my dislike of needles doesn't make this transition too difficult, I keep hearing that it is not as bad as you think.
Good luck with yours and keep in touch with progress.
 
Hi. Join the club of so-called T2s. My GP guessed I was T2 diabetic using a urine stick. I had lost a lot of weight at diagnosis, had never been overweight and had been to the gym for many byears and had a sensible diet. My diabetes specialist GP then and my new one now only understand two db types i.e. you are either T1 (born with it) or T2 if you weren't born with it. The level of knowledge of some of these diabetes specialists is appalling. Do ask for a c-peptide and GAD test. I will do the same next time if my BS remains high. It is becoming increasingly obvious that LADA can stretch into your 50s so having the tests is worth the time as it confirms or otherwsie that insulin is probably the best move.
 
Hi Lorri!

Try not to be scared! However, as others have said, you need to ask for GAD antibody test and, preferably a c-peptide test as well. You sound like I was when i was misdiagnosed as Type 2. I turned out to have LADA - an adult onset form of Type 1. My background (basal) insulin was still workiing well, but no insulin was produced after food (bolus), so my BG would spike very high after meals, but come back down over time so that my fasting levels were very good. As my condition progressed, the spikes got worse and my own basal insulin has got weaker. Basically, I lost a lot of weight and got quite ill before they did the tests, diagnosed me with LADA and got me on insulin. Please go and check this out asap so that you don't end up ill. There are quite a lot of us LADAs on the forum, so there is a lot of help and advice.

Let us know how you get on

Here's a link to some more information on LADA:

http://www.diabetes.co.uk/diabetes_lada.html

p.s. What are your cholestorol and blood pressure levels like? Often people with Type 2 have other metabolic syndrome conditions such as high blood pressure and high cholestorol whereas those with LADA often do not have these characteristics (because Type 1 is autoimmune rather than metabolic if that makes sense!), so being slim with a good diet and plenty of exercise, sudden weight loss and absence of other metabolic syndrome conditions would indicate a form of type 1 rather than Type 2. In these circumstances, your doctors should be suspecting and testing for Type 1.

Hope that helps a bit. PM me if you want to.

Smidge
 
Hey everyone, firstly, thank you so much for your replies and support :-), but before I logged on to see them I had come home from work today having had a melt down, unable to cope with anything. my blood sugar levels were 12.8 by 10 this morning only having had a slice of burgen toast. my first morning test was 8.2, which was quite good as it's normally over 10. When I got home I found that the dietician that was on the Desmond I attend on monday had contacted my doctor to advise that I clearly shouldn't have been there, that I was resticting my carbs to maintain as low levels as I could without success and that I should be tested for Type 1 asap!. I made an appointment with the doc for a telephone consultation at 4.30 today. Feeling very low and tired I'm afraid I lost my will power and went to to the fridge to see what I could binge on.....well I say binge...even when I'm intent on filling my face I still only let myself have 4 rivitas with ham and low fat philly, and a packet of low fat crisps.....oh and a handful of popcorn.....lol....feeling very apprehensive I tested almost 2 hours later to find it had gone up to 17.9. My husband thankfully dragged me out on a bike ride to get them down. 2 hours later....4.6! phew. But during the bike ride I had a call from the Doc (before my appointed time) to say that she was concerned to hear what the dietician had advised.....and that she was referring me to the hospital immediately to test for Type 1 and also leaving a prescription out so that i could test for Ketones......Then I started to panic, should I be doing this exercise if I am producing Ketones? I'd read somewhere that I shouldn't ? What does Diabetes type 1 mean? I had research all about Type 2 but not Type 1? I am not quite sure why I am scared of insulin? will it make me fat? Sorry but having worked hard all my life to stay fit and slim, I think I would find it hard ....you probably all think I'm crazy? :-)

Smidge... you asked about my Cholestoral....it's 4.8 and HDL is 2.3. My blood pressure is 120/80. so I guess you might be right? we'll soon see. I will let you know how it goes when I get the tests back.

ps. what does PM mean? :-) It's all new to me! lol

Thanks again for you help.
Good night all. Mwah x
 
Type 1 is more of an autoimmune issue where the beta cells in the pancreas die out and so you are unable to produce much, if any, insulin. Any carbohydrate would thus send your BG very high as there's nothing to bring it down. A type 2 has some insulin (varies from person to person) so can cope with reasonable levels if carbs. If you are type 1 you will need to use insulin. I'm not an expert on this, but there are plenty if slim type 1's on here so don't panic! I'm sure there will be type 1's along soon to give you more info. The plus side would be that you could go back to a pretty normal diet without sky high BGs if you use insulin. And at least you'll know! Good luck.
 
Hello again Lorri.

Don't be scared of insulin and I don't think you are crazy at all. My son is Type 1 and is not fat. Just like when you are Type 2 or a non diabetic so long as you keep to a reasonable diet you will be fine and in your case you can start eating normally again! As Type 1 you cannot avoid going on insulin as you are no longer producing any or enough so I'm afraid that's something you are going to have to come to terms with. There is no way you could continue going on the way you were as it was making you very ill. I'm really pleased that someone finally recognised your symptoms so now you can get sorted and get on with your life.

Take care, let us know how you are getting on and keep asking questions.
 
lorri1 said:
ps. what does PM mean? :-) It's all new to me! lol
Click to expand...

PM means the Private Messaging system where you can communicate privately with other members. You will be able to use this facility when you have posted five times. I see you have changed username on this thread so you will have to have posted 5 times with one of those names. As only one username per person is permitted, please tell me by PM, when you can use it, which name you would like to keep.

Here is the information we give to new members and I hope you will find it helpful. Keep on asking questions!

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.
Click to expand...
 
hey Lorri,

Please keep us posted. I also think you might be a type 1 as I am a typical type 2 and nothing like your symptoms.

Good luck,

Ant :)
 
Hi daisy,arh I see, thanks :thumbup: I had to change my username as I was on the computer at home when I needed to speak to someone , I'd initially set up as a member from my work pc but as I am off sick at the mo. I guess it will be lorri1 in future if I can't use both?.

well it does sound like I may be Type 1 the more I read but the test results should confirm. Hopefully I will receive an appointment in the post today. The sooner I know the sooner I can get sorted. The thought of being able to have a normal diet again appeals greatly! ..:-) I know I will keep up my regular exercise as that is just the way I am, it's not just about weight it's about being fit and as healthy as I can be.....However, I still find it hard to believe that this has happened when I have worked so hard to keep active and healthy, it's a real kick in the teeth isn't it?..... :thumbdown:

Hey Dib, hopefully we can get through this together, I am not so bothered about the needle side of things, more about how it works...ie. something about how many cabs to how much insulin....sounds complicated? :think:

speak soon :wave:

Lorri x
 
OK Lorri, lorri1 it is then. Welcome ! You can use the same user name from any computer. ATB.
 
"Hey Dib, hopefully we can get through this together, I am not so bothered about the needle side of things, more about how it works...ie. something about how many cabs to how much insulin....sounds complicated? :think:

speak soon :wave:

Lorri x"



Yes I would really like to keep tabs on someone at about the same stage as me. I think I will get my head around the calculations ok, it's just sticking those needles in that will be my biggest hurdle so a bit of two way support would be great. :thumbup:
I will know at the end of April whether I should go onto insulin and I will probably just push for it anyway instead of messing around with oral meds when I will eventually have to go on it whatever happens.
Let us know how you get on.
:wave:
 
Hey Lorri!

Developing Type 1 diabetes is just one of those things - it has nothing to do with your general level of fitness, weight, nutrition or anything else of that kind as far as I know - just bad luck :cry: Your profile and symptoms really do suggest Type 1. I was 42 when was diagnosed - it really can start at any age. Please don't fear the injections or the insulin - you get used to it very quickly - it just becomes part of every day life. For me, I was so relieved to get a proper diagnosis and appropriate treatment. When I was misdiagnosed as Type 2, I found it all very depressing because everyone else seemed to be able to control their BGs but mine went high no matter what I did; I ate properly, exercised regularly ete etc but still my BGs went to double figures whenever I ate anything - I just felt like a complete failure. It was only when I got my proper diagnosis tht I realised I'd been trying to control Type 1 diabetes on diet and exercise for a year :roll: As soon as I went onto insulin I started to feel better. I'd encourage most people with LADA to go straight onto insulin - it's an inevitable progression and actually gives your poor pancreas a break. There is increasing evidence that drugs like Gliclazide put even more strain on your struggling pancreas, causing you to progress more quickly to full Type 1, whereas insulin relieves the strain on your pancreas, protects your remaining beta cells and slows down the progression from LADA to full Type 1. I was terrified of injecting and was in tears when the nurse was explaining about insulin, but the injections really are easy and usually less painful than the finger pricking! My needles are only 4mm long. The carb counting is relatively straightforward once you get your head around it. It is a bit scary at first, but going onto insulin was the best thing I've ever done, so try not to worry - it's nowhere near as bad as you probbably fear :) Get your tests done and take it from there.

Just one word of warning - the GAD test can be inconclusive. A positive test confirms Type 1, but a negative test doesn't rule Type 1 out, so it can be very frustrating. That's why everyone's suggesting you ask for a c-peptide test as well. Having both tests gives you a better chance of a conclusive diagnosis.

Good luck - and ask anything you need.

p.s. Once I went onto insulin, I put back on the weight I'd suddenly lost previously, but I didn't put anymore weight on. I'm only 5 foot, and my weight had gone down to less than 6.5 stone, but now it's back at 7 stone which is a healthy weight for my height and build. I've been on insulin about 18 months and my weight is very stable. I choose to low-carb as that helps keep my BG under control and I think it helps avoid weight gain, but you'll have to decide for yourself what type of diet is right for you.

Smidge
 
Hi Smidge, you're a star :thumbup: Thank you so much for your response. Build wise, we sound very similar :) . Well at least now I can stop feeling like I have done something wrong and you know what?... I think I am doing bl**dy briliant (sorry for swearing) by keeping my levels down, (if I am Type 1 then)....mind you, probably half killing myself in the process!, being off work I have been able to exercise after every meal to keep it below 12, but clearly it's not sustainable as I am worn out :( but mentally it helps me when I see the levels not too high. The restricted diet is causing me to feel unwell, so tired as I am not able to get the energy from my food and then, mentally it effects me more, unable to cope. My weight has dropped to 6.2 from 6.7, which doesn't seem alot but as you know being small losing a few pounds or putting on a few, makes a difference. It seems to be stable at 6.3 and not losing more so that's good. To be honest I now can't wait to go on insulin from what you tell me lol. Those finger pricks really do hurt somethimes! lol.... Unfortuanately I will have to wait and be patient for the appointment from the hospital, I will make sure I ask about the c-peptide, hopefully they will give me one?.

one more question :-) what about exercise on insulin....how is that effected, Obviously at the moment I have no real concern about hypo's as my BG's are so high anyway. I assume you still self test?.

Lorri :wave:
 
Hi,
I've just skimmd though the thread and I'm not sure if anyone answered about ketones and exercise.
If you're 14mmol/l or above then you should test and if you have ketones then you shouldn't exercise. If you're above 17mmol/l then they advise not to exercise:http://www.mayoclinic.com/health/diabetes-and-exercise/DA00105

I tried to ride a bike one day and my breathing became very rapid. This was what sent me to the doc (I'd had the weight loss and frequent urination etc but considered since I was thin and ate heathily I was doing the treatment for T2 anyway, far too old for T1 so I thought!) The doctor tested, sent me to hospital (in France not the UK) where they put me straight onto insulin.
Since then I've run marathons , gone on backpacking and skiing holidays not bad for a Granny with T1 diabetes. Yes , there have been a few problems mostly to do with hypos and exercise. Even though I now use a pump there are times, one only on Tuesday when I was fighting a hypo for the last 4k of a 10k walk with a walking group... very awkward, didn't have a map so couldn't really do the safe thing and stop and found it very very hard but I finished in one piece.
(I call it 1.5 so much now days, though it definitely was slow onset. in essence it's a subset of T1 and that is what my docs call it)
 
Hi Lorrie
I was diagnosed 5 years ago with type 2. I'd lost so much weight, which I put down to the menopause, thought maybe I was lucky, losing weight, not putting it on, but everyone said you put weight on during the menopause, not lose it! I visited my sister who is diabetic, she pricked my finger and my sugars were 22.8. I saw my doctor the next day who said "definately diabetic". After I was diagnosed I tried so hard to be "good" with my eating, I went down to six and a half stone.
I'm taking a concoction of drugs, Gliclazide 200mg, Actos 45mg per day, Aspirin 75mg and Rosvustatin 10mg for cholesterol. I think , like my doctor, maybe I'm type 1 in later life , rather than type 2!
Like you, I thought I had passed the menopause and life would be a "doddle"
I've gained weight, about 8st now, but it is the drugs! It certainly is not what I feed me!
 
Hey Dib, thanks for that link! Think I will send it to everyone I know so that they can appreciate what it's like, I'm sure most of my colleages at work think I am taking the P*ss sometimes when I am not in work. I have always been the type of person that is never off sick and is very conscientious, maybe I am being a little hard on them? but I so want them to understand :0( . Really, I felt like crying when I read it, it's right ...soo right !.
 
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