I think I need help!?!?!

[jax8008]

Hello everyone

I first sent this as a pm to Adrienne who has suggested for me to post it on here so I can get extra advice and replies. I look forward to your comments......... (I have discovered more things in the last 4 weeks on here than over the last 12 months - thank you!)

Hello Adrienne

My name is Jackie and from looking through the forum your name keeps cropping up saying that you're the carb counting fairy!! I was diagnosed with type 1 (at the age of 46) last February and seemed to be managing and controlling until about 4 months ago. Three weeks ago my GP informed me that the problems I was experiencing when I saw him were not to do with the diabetes but anxiety. I have been off work since then, prescribed antidepressants and checking my blood sugars on a very regular occurrence due to symptoms of anxiety being similar to me having hypo or hyper. I have noticed that I seem to be experiencing hypos on a regular basis, sometimes I can see why if I have taken too much insulin with the carbs I have/have not eaten or that I have done too much exercise (hoovering up!). I did have some Lucozade once after a hypo and my blood sugars went up into double figures and affected me for the next 24 hours, is that normal?

Sorry for the rant, is it a case of trying different foods to see how they 'work'. The DAFNE course is held within my home town but I still haven't been offered to go on it, I asked my GP this time and he said to wait until I was feeling better mentally which I can understand. Just wanted to know as I always went on 'feeling normal' and over the last 4 months I haven't felt normal and its affected my work.

If you feel that this needs posting on the forum please feel free to do so and I look forward to hearing back from you.

Thanks Jackie x

 

[Lizzzie]

Hi Jackie

Diabetes can be a bit of an emotional roller-coaster at the best of times.

First off is, don't worry if you make a 'mistake'. But you can learn from these, if you write your decisions down (e.g. Had 100g cerial = 56g carbs, had 4 units insulin) and also the oucomes (2 hours later, BS 10, more insulin was needed).

If you do go hypo, 'over-correction' is common because your sugar can start gonig up again before you stop 'feeling hypo'. Try to use the same correction stuff (e.g. lucozade) all the time, then you'll get used to how much you need. Try limitting yourself to say, 1 mug of lucozade, and seeing what happens (as long as you're in a safe environment) rather than just swigging from the bottle like I used to do.

 

[Lizzzie]

Part 2: Keep your diet fairly regular to start with: mine is always fine when I'm at work because I follow the same routine every day: it's at the weekend it goes haywire because I might do unfamiliar things (e.g. different levels of exercise, meals out etc.)
Wehn I haev a 'haywire' day, I get steady again by eating 'safe' foods the next day

For me, getting breakfast right is the most important. Get breakfast wrong, and the whole day somehow follows. If you're like me in that, it might help to weigh out your breakfast in a morning and have the same thing every morning for a while...

Yup, I weigh my food when i'm at home. Might sound a bit OTT, but if I know exactly what's going in, I'm half-way there.

The other half is to do with what time of day? (I burn carbs more slowly in the evening, maybe 'cos I'm not dashing about?) and how much activity.

But remember, everybody has bad days with it. Don't let them get you down....just start again tomorrow.

 

[Adrienne]

Hi Jackie

Thought I better post my reply so that the others can see what I said, I was stabbing in the dark really.


Hi Jackie

Sorry I haven't replied before.

Sounds like you are having a rough time. One query that keeps popping out at me is why you are seeing your GP if you are type 1. That is odd I think. Most type 2's see the GP but most type 1's see the hospital consultant and have a DSN as well. Why are you under your GP.

I can't help with the anxiety bit at all. Are you sure it is anxiety and not badly managed diabetes? I am not saying you badly manage it but your doctor is, or so it sounds like.

What regime are you one? I am hoping you are going to tell me MDI (novorapid and Levemir/Lantus) or an insulin pump (which I am presuming you are not). If you are on MDI then you should be carb counting. To me it sounds like you were in honeymoon which is why you had good levels for a while, then you come out of honeymoon and it goes haywire and you have hypos and hypers and it sounds like your doctor hasn't taught you how to control it at all.

I think that to start with you should post this message onto the main list as I think you may get other helpful replies. This isn't straightforward. I am presuming you agree you are type 1 and not type 2? The only reason I ask is that generally 40 is about the top for type 1. I'm not saying they are wrong but have they done tests etc.

I have a friend (not on this forum) who's husband was diagnosed type 1 then they decided he was type 2 then back again and so they did tests to decide. No idea what the tests were but it was very confusing for all involved as he was over 40 and clearly had some sort of diabetes.

🙂

 

[margie]

Hi Jackie

Some anxiety symptoms are like hypo symptoms and that is probably where your Dr was coming from.

Had you been testing regularly before you saw him - because if not you could show him that you are going hypo so much he might suggest changing some of your insulin doses. Its possible that when you saw him you came across as anxious as you were worried about your symptoms and he jumped to the wrong conclusions.

Its all very well saying wait until your feeling mentally better -but how long do you delay?It might be that knowing you are going to attend a DAFNE course and actually attending might make you feel mentally better.

Hope you get some joy

 

[jax8008]

Hi Jackie

Thought I better post my reply so that the others can see what I said, I was stabbing in the dark really.


Hi Jackie

Sorry I haven't replied before.

Sounds like you are having a rough time. One query that keeps popping out at me is why you are seeing your GP if you are type 1. That is odd I think. Most type 2's see the GP but most type 1's see the hospital consultant and have a DSN as well. Why are you under your GP.

I can't help with the anxiety bit at all. Are you sure it is anxiety and not badly managed diabetes? I am not saying you badly manage it but your doctor is, or so it sounds like.

What regime are you one? I am hoping you are going to tell me MDI (novorapid and Levemir/Lantus) or an insulin pump (which I am presuming you are not). If you are on MDI then you should be carb counting. To me it sounds like you were in honeymoon which is why you had good levels for a while, then you come out of honeymoon and it goes haywire and you have hypos and hypers and it sounds like your doctor hasn't taught you how to control it at all.

I think that to start with you should post this message onto the main list as I think you may get other helpful replies. This isn't straightforward. I am presuming you agree you are type 1 and not type 2? The only reason I ask is that generally 40 is about the top for type 1. I'm not saying they are wrong but have they done tests etc.

I have a friend (not on this forum) who's husband was diagnosed type 1 then they decided he was type 2 then back again and so they did tests to decide. No idea what the tests were but it was very confusing for all involved as he was over 40 and clearly had some sort of diabetes.

🙂

Thanks Adrienne
I dont seem to be able to find the reply to your message so thought I would put it alongside your reply.....

Yes I was diagnosed type 1, my sister has been type 1 for about 18 years (she also suffers from lots of hypos and has tried lots of different things but still they happen frequently for her) so had an insight into what was happening, but didn't think I would be type 1 at my age.

At first I saw DSN at our local hospital and she went through carb counting and then I saw a dietician once but no follow up. My GP took over my care after about 6 months and I have only seen the 'specialist' GP once and then practice nurse who said that my blood tests were great!

I am on Levemir and Novorapid MDI and carb count. When I began to notice the problems I would be testing my blood sugars and they would more often than not be fine, in fact I made a point of writing everything down (times, actual food eaten, feelings, symptoms, insulin, blood sugars) the week before I saw my GP 4 weeks ago and l can say that it was good so I can see why he said that it wasn't the diabetes - but I do think it is having an impact as I personally don't feel 'normal' nearly all the time and this also makes me fearful of going out in case anythings happens, i.e. hypo/hyper.

 

[margie]

Jackie sorry that you are developing a fear of going out. I would have thought that as the fear is of going out that the one thing that would help you is a course that aims to help you control your levels so that these fears have less hold. I would have thought the worst thing for you is to be at home all the time and not being able to challenge the issues. Maybe you can approach the Dr and put it that way - that the DAFNE course would help allay your fears and that in turn would help your mental health.

 

[jax8008]

Hi Jackie

Some anxiety symptoms are like hypo symptoms and that is probably where your Dr was coming from.

Had you been testing regularly before you saw him - because if not you could show him that you are going hypo so much he might suggest changing some of your insulin doses. Its possible that when you saw him you came across as anxious as you were worried about your symptoms and he jumped to the wrong conclusions.

Its all very well saying wait until your feeling mentally better -but how long do you delay?It might be that knowing you are going to attend a DAFNE course and actually attending might make you feel mentally better.

Hope you get some joy

Thanks for this Margie, I actually wondered about the DAFNE course and how can I know that I am doing things right if I am not given the correct tools?

My anxiety is still with me, although not as bad as 4 weeks ago, although I have not 'pushed' myself into going far from the safety of my home without someone (who understands what I am going through) being with me.

I am back at my GPs next week and am collecting evidence of my week to show.

Part 2: Keep your diet fairly regular to start with: mine is always fine when I'm at work because I follow the same routine every day: it's at the weekend it goes haywire because I might do unfamiliar things (e.g. different levels of exercise, meals out etc.)
Wehn I haev a 'haywire' day, I get steady again by eating 'safe' foods the next day

For me, getting breakfast right is the most important. Get breakfast wrong, and the whole day somehow follows. If you're like me in that, it might help to weigh out your breakfast in a morning and have the same thing every morning for a while...

Yup, I weigh my food when i'm at home. Might sound a bit OTT, but if I know exactly what's going in, I'm half-way there.

The other half is to do with what time of day? (I burn carbs more slowly in the evening, maybe 'cos I'm not dashing about?) and how much activity.

But remember, everybody has bad days with it. Don't let them get you down....just start again tomorrow.

Thanks Lizzzie for both your replies..... I tend to do the same 'routine' in the morning and my blood sugar levels can alter even with eating the exact same food. Today for example I had spaghetti (50g) for evening meal with garlic bread (20g) and salad and a lovely Crunchie biscuit (10g) afterwards with a coffee, read with care the labels to make sure that I had correct amount of insulin - half an hour before eating I tested 5.9 had 4 units on Novorapid (half unit insulin to 10g carb) an hour later (I wasn't feeling 'normal') I was 8.3, then half an hour after that I was down to 4.7 (feeling worse by then). Is this 'normal'? Its the feelings of not being normal that get to me more than anything.

 

[margie]

If its the feelings that are bothering you try this (it will sound daft and may not work but you have nothing to lose).

Imagine the way you are feeling as a shape, then with your imagination make the shape bigger. smaller, fatter, thinner - manipulate it which ever way you want. When you start feeling bad try this exercise (if you can remember). Its meant to be a way to see the feelings for what they are a feeling that may upset or disturb you but won't hurt you.

 

[jax8008]

If its the feelings that are bothering you try this (it will sound daft and may not work but you have nothing to lose).

Imagine the way you are feeling as a shape, then with your imagination make the shape bigger. smaller, fatter, thinner - manipulate it which ever way you want. When you start feeling bad try this exercise (if you can remember). Its meant to be a way to see the feelings for what they are a feeling that may upset or disturb you but won't hurt you.

The feelings I describe are symptomatic to diabetes in that I have to warn me of hypo/hyper but this has all been confused with the addition of the anxiety in which I am having the same symptoms!!

 

[Adrienne]

Hi Jackie

Just to through something else into the mix, have you (and your sister) ever thought about a pump. They are the next step after MDI and with you obvious fear of hypos this is a criteria for a pump. If your sister also has lots of hypos, then she would qualify as well.

Have a look at this website :

http://www.input.me.uk/

Just a thought.

 

[Lizzzie]

Hiya Jackie

The example you gave sounds ok to me. Have the doctors given you a 'target' range? Is this within it?
My target range is between 4 and 8 so the reading at 1 hour might have been slightly high, but 0.3 too high 1 hour after eating a pretty densely carbohydrate-packed meal like the one described, isn't too bad..... I wouldn't have lost any sleep over it.
Readings in the 4s are within 'normal:' most 'normal' i.e. non-diabetic people normally have a BG between 3.5 and 6

What happened 2 hours later? DId your sugar continue to drop, or did it level out? If it levelled out, I'd have been pleased with those readings. 🙂

Sooo... I would have attributed the 'feeling worse' to something else, possibly anxiety?

 

[Lizzzie]

Part 2: What Adrienne said about you not going to a hospital clinic made me think... is there somewhere you could go to for more support? Could you ask your doctor to refer you?
My Hospital's diabetic nurse said, 'First thing is, I'm here for you. You can tell me your problems, you can ask questions, you can even stop me and have a good cry if you want....' and that was a fantastic thing to hear. Sounds like you'd benefit from someone like her...don't NHS GPs have a 7.5 minute average consulting time to meet, or something? It's too much to discuss in 7.5 minutes. NHS24 phoneline might know your local friendly diabetes nurse....

A possible next step could be to identify what a 'normal' or 'ok' range for you is (health professional should tell you this) so that when you get the 'feelings', you can test on a glucometer and use this result to tell you whether it's a lapse in your glucose control or whether your glucose is ok. If it's ok, then maybe it's the anxiety talking.....

 

[jax8008]

Hiya Jackie

The example you gave sounds ok to me. Have the doctors given you a 'target' range? Is this within it?
My target range is between 4 and 8 so the reading at 1 hour might have been slightly high, but 0.3 too high 1 hour after eating a pretty densely carbohydrate-packed meal like the one described, isn't too bad..... I wouldn't have lost any sleep over it.
Readings in the 4s are within 'normal:' most 'normal' i.e. non-diabetic people normally have a BG between 3.5 and 6

What happened 2 hours later? DId your sugar continue to drop, or did it level out? If it levelled out, I'd have been pleased with those readings. 🙂

Sooo... I would have attributed the 'feeling worse' to something else, possibly anxiety?

Thank Lizzzie for your reply I think I need 'educating'! I was told initially by the DSN to aim for between 5 and 7.5 with "5 to drive" and "4 hit the floor" and I was under the impression that I would only have to test my blood sugar levels a couple of times a day???? I have always tested them when I don't feel 'normal' and therefore when I've eaten and then as a result I don't feel 'normal' I am testing my blood sugars and sometimes get into double figures which I think I shouldn't be doing.

As for my blood sugars the other evening did continue to drop.

Why is it all so very confusing?

As Margie suggested I'm definitely going to request for referral to both the DAFNE course and to see the DSN as we have a Diabetes Education & Resource Centre at our local hospital, I think I need that resource for my education!

Thanks for your help and advice - I'm beginning to feel a little more positive about diabetes and how I'm going to 'control' it rather than it controlling me.