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Newly diagnosed - unknown type

jenhop187

Member
Messages
19
Type of diabetes
Type 1
Treatment type
Insulin
Hi
I was diagnosed with diabetes in feb 2015, however, it's not bee very straight forward. We do not know which type and even my consultant is confused with what's going on. Currently they are leaning towards either type 1 with negative antibodies or a kind of MODY. Currently on twice daily insulin. 28 years old, slim build.
Since I was diagnosed I've been in complete denial, kept thinking maybe it's not diabetes at all. However, had my bloods done this week and my c-peptide level has dramatically dropped, still not confirmed but now possible type 1 diagnoses.
I suddenly feel completely out of it, need to tell myself to start accepting this. I feel today like I should of felt 6months ago when this all began. I'm not sure now how to deal with all of this.
 
Hello welcome
Becoming diabetic is a big shock whatever type, though it does help to know, both rely on you taking care of yourself, denial is one of the usual experiences, you may feel depressed, a bit shell shocked, but on the positive side, you've found the right site for information and support, no question is out of bounds so ask away.
 
Hi Jenhop, welcome. I will tag @daisy1 who will be along shortly with an info pack for newbies.
 
@jenhop187

Hello and welcome to the forum Hopefully some information will help you to feel better about everything. Here is the advice we give to new members which I hope you will find useful. Ask all the questions you want and someone will 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 over 150,000 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.
 
Thank you for all your comments especially @daisy1. I have my appointment this morning to discus my latest bloods , so I should know more then.
 
Hello and welcome. Just to say that while you're waiting to find out what sort of diabetes you have, it won't hurt to think about what you're eating and drinking now and whether to cut down on carbs and compensate with fat. What you decide will depend on your own circumstances and lifestyle.
I expect your next post will include your test results so we can go from there.
 
Hi and welcome. The low c-peptide indicates you do need insulin regardless of type. The low-carb diet will also help. It sounds like you are on twice a day mixed insulin currently? The Basal/Bolus (or MDI) regime with two insulins will always give the best control so do discuss moving to this shortly with the GP/consultant. Insulin is often started on the mixed which is a good start but be aware of the future options using two insulins.
 
Your story sounds so much like that of my own, I'm so interested to find out your result, I have been going through all this since I was pregnant 18months ago and still not had an actual diagnosis, I have my next consultant appt next week and at the last one he said he wants to test for mody, I just feel all in a blur/denial with it all but it's nice to know I'm not the only one and I hope you may be able to take that out of this message also. X
 
Hi Amy and @jenhop187 . Here is some info about MODY if you haven't seen it already:

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

http://www.phlaunt.com/diabetes/14047009.php
 
Amy6825 it's nice to know someone else is in the same situation. Seen my specialist nurse last week. She seems to think I'm still in my honeymoon period which is why I'm only needing small amounts of insulin. She is going to chat with my consultant to maybe change my insulin but I haven't heard back yet. What are you currently on?
I went through a really bad week where I was very upset, now I'm feeling much better but as soon as I get annoyed/someone annoys me then that just sets me off all over again!! I've heard people say the first year is the hardest, so hopefully once they know what's going on it might seem more normal!! X
 
I was the same with the insulin and fought to be taken off it (I think part of my denial) so am now on gliclazide which does seem to be working but my evening readings can still be high mostly double figures, I go back next week to discuss genetic testing for mody, my specialist nurse and consultant don't seem to have contact and kind of contradict each other which is a bit annoying. Where are you? I'm North west England x
 
Just my 2 cents worth... I'd be inclined to believe a consultant over a nurse as they have much more training. But there's no harm in asking either of them to explain their comments, then you have a chance at understanding why they differ.
 
Just my 2 cents worth... I'd be inclined to believe a consultant over a nurse as they have much more training. But there's no harm in asking either of them to explain their comments, then you have a chance at understanding why they differ.
I did feel the same until the consultant said that if I don't have mody he gives up and doesn't know what I have, I have looked into going private but apparently it's the same consultant at the private hospital so pointless!
 
That's awful of the consultant to say that!! I feel I'm quite lucky my nurse and consultant work very closely together on rare cases. They've even done quite a lot of research together. They told me dnt worry too much on not knowing what type it is, some ppl can take years to be diagnosed esp if it's really rare. They just said focus on managing it in my life. Still I hate not knowing and waiting around!! The stored my DNA in March to save for MODY testing. Is there any way you can request to see somebody different? X
 
I did feel the same until the consultant said that if I don't have mody he gives up and doesn't know what I have, I have looked into going private but apparently it's the same consultant at the private hospital so pointless!
Oh that's very unprofessional of him to think or say that. There are many, many types of MODY and it all seems very complicated to me. It's possible that there are rare types of MODY being discovered all the time, that only researchers know about so far. Here's another link about MODY if it's any help:
http://www.niddk.nih.gov/health-inf...aturity-onset-diabetes-young/Pages/index.aspx

If you reach the point where you need to see someone else, it may be worth travelling an hour or two.
 
Thank you
 
I don't know who I would ask to see someone different, I figured I would give him the chance of the genetic tests and see where that leads.
 
I don't know who I would ask to see someone different, I figured I would give him the chance of the genetic tests and see where that leads.
You could call the hospital anonymously and ask who the endocrinologists are. If there is an alternative, then you could ask to speak to the nurse in charge of that department. I was able to change consultants this way once.
 
You could call the hospital anonymously and ask who the endocrinologists are. If there is an alternative, then you could ask to speak to the nurse in charge of that department. I was able to change consultants this way once.
Will give that a try thank you
 
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