It’s a struggle

emmawhit32

Active Member
Messages
40
Type of diabetes
Type 1
Treatment type
Insulin
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Bullying if you have nothing nice to say don’t say anything!
Hi I’ve had type 1 diabetes since the age of 8 I’m now 32. Just recently I’ve really struggled to keep in normal levels.. The diabetes has never really bothered me before but I try so hard to keep them within range and these past few months have failed. Does any one else have the same problem?? And what can I try?? I’m currently on 17units of solo star and novo rapid with meals I’m about 5ft tall and 7st 3lbs is this enough insulin I don’t know how to get any advise!? I’m just really fed up with myself at the moment and I’m worried I’ll end up dead or blind if I cant sort myself out soon. Any help greatly received!!!
 

donnellysdogs

Master
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13,233
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1st off, are you in UK? Are you under hospital care? If so, you need to contact them urgently tomorrow.

If not in UK, you still need to get hold of medical experts that can have a look at your lifestyle and eating/insulin in detail.
 

donnellysdogs

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Do you carb count and adjust your own insulins?

And welcome too!! Glad you found forum..
 

emmawhit32

Active Member
Messages
40
Type of diabetes
Type 1
Treatment type
Insulin
Dislikes
Bullying if you have nothing nice to say don’t say anything!
1st off, are you in UK? Are you under hospital care? If so, you need to contact them urgently tomorrow.

If not in UK, you still need to get hold of medical experts that can have a look at your lifestyle and eating/insulin in detail.
Yes I’m in the UK no not under hospital care just gp they take my bloods every 6months but they can’t offer advise on insulin doseage so I don’t know who to ask??
 

emmawhit32

Active Member
Messages
40
Type of diabetes
Type 1
Treatment type
Insulin
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Bullying if you have nothing nice to say don’t say anything!
Yes I try to carb count but for some reason recently my rapid insulin is sending me low during my meal ‍♀️ And then spiking up afterward

Thanks I just feel I need a bit of support no one else in my family suffers with diabetes and I know no one else with the condition it’s hard to cope when no one understands
 

donnellysdogs

Master
Messages
13,233
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As a T1 you should request your GP to refer you to hospital consultant for beat care.

Are you happy adjusting yoyr bolus's for food or adjysting your basal injection doses?
 

emmawhit32

Active Member
Messages
40
Type of diabetes
Type 1
Treatment type
Insulin
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Bullying if you have nothing nice to say don’t say anything!
Yes I’m happy adjusting them.. but I have an appointment with the nurse next week I will ask who she can refer me to. I’ve had diabetes 24 years and usually I can cope... I did have gastroenteritis on holiday in October and I think that has really knocked me for six and it really affected my blood sugars I lost confidence with my diabetes and I’m struggling to get back on track
 

DaveTC

Active Member
Messages
35
Type of diabetes
Type 1
When do you take your insulin? Obviously before your meal, but if you give it 15-30 minutes before you could reduce that time.
 
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emmawhit32

Active Member
Messages
40
Type of diabetes
Type 1
Treatment type
Insulin
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Bullying if you have nothing nice to say don’t say anything!
I take my solo star at 12pm everyday. I tried to do the novo rapid a bit later then I go too high during my meal too early I’m going low during my meal.. maybe I’ll try 10mins before my meal!? I’m just scared of dipping too low my body is not reacting like normal... it’s ever since I had gastroenteritis everything has gone haywire!! I’m sure I’ll get back on track soon... I hope!!
Thanks for reply
 

Levy

Well-Known Member
Messages
312
Type of diabetes
Type 1
Treatment type
Insulin
100% agree on getting referred to a hospital, and I'm a bit shocked you haven't been to be honest! You'll be able to see a consultant, diabetes nurse (who both have experience with helping you optimise your doses) and sometimes even a dietitian should you feel the need to. I go every 3 months and couldn't do this without that.

As for the gastroenteritis, do you think it could have affected the way your food is digested? How long after your meal are you spiking? You could potentially try and split your bolus until your body decides to sort itself out. I had to do this for a while a couple of weeks ago because it was spiking around 2 hours after my meal. If I had to bolus 5u, I would take 3u with my meal and the other 2u about an hour after eating.
 

Circuspony

Well-Known Member
Messages
959
Type of diabetes
Type 1
Treatment type
Insulin
Whereabouts in the country are you? Someone on here might be able to tell you where the nearest diabetes team to you are based. When I was discharged from A&E I googled the number of the team at the local hospital and phoned them directly - they were fantastic.
 
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emmawhit32

Active Member
Messages
40
Type of diabetes
Type 1
Treatment type
Insulin
Dislikes
Bullying if you have nothing nice to say don’t say anything!
100% agree on getting referred to a hospital, and I'm a bit shocked you haven't been to be honest! You'll be able to see a consultant, diabetes nurse (who both have experience with helping you optimise your doses) and sometimes even a dietitian should you feel the need to. I go every 3 months and couldn't do this without that.

As for the gastroenteritis, do you think it could have affected the way your food is digested? How long after your meal are you spiking? You could potentially try and split your bolus until your body decides to sort itself out. I had to do this for a while a couple of weeks ago because it was spiking around 2 hours after my meal. If I had to bolus 5u, I would take 3u with my meal and the other 2u about an hour after eating.

Yes I definitely think the gastroenteritis has affected my digestion I was so poorly and it’s taken me 3 months to feel anything like normal. Yes it’s usually a couple of hours after I eat they spike. I might try that out when you say bolus is that the fast acting or the 24hour one!? Excuse my ignorance!! I’m going to the nurse on Wednesday so I’m going to ask who can help me!
 

Levy

Well-Known Member
Messages
312
Type of diabetes
Type 1
Treatment type
Insulin
Yes I definitely think the gastroenteritis has affected my digestion I was so poorly and it’s taken me 3 months to feel anything like normal. Yes it’s usually a couple of hours after I eat they spike. I might try that out when you say bolus is that the fast acting or the 24hour one!? Excuse my ignorance!! I’m going to the nurse on Wednesday so I’m going to ask who can help me!
It's the fast acting one :) good luck hope you can get that referral! At my old hospital I went almost a year without an appointment due to long waiting times and I felt so lost and quite alone to be honest.
 
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jaynepresland

Member
Messages
6
Type of diabetes
Type 1
Treatment type
Insulin
Yes I definitely think the gastroenteritis has affected my digestion I was so poorly and it’s taken me 3 months to feel anything like normal. Yes it’s usually a couple of hours after I eat they spike. I might try that out when you say bolus is that the fast acting or the 24hour one!? Excuse my ignorance!! I’m going to the nurse on Wednesday so I’m going to ask who can help me!
Bolus is your short acting - novo rapid and Basal your long acting. Speak to your gp and he will refer you to your hospital diabetes team. I hadn't been to the hospital for a number of years. I have been diabetic for 32 years and like you had gastroenteritis, but got it twice in 4 months and it through me off balance. My gp got me an emergency appointment and was seen 2 weeks later x
 
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Jeremy_Wood

Well-Known Member
Messages
66
Type of diabetes
Type 1
Treatment type
Insulin
Hi @emmawhit32 sorry to hear you're struggling. we're all here for you though so keep your chin up!

I'm also 32, T1 since 5. Similarly to you, I've noticed my control has suffered in the last few years. It seems that as soon as I turned 30 it became so much harder to stay on top of it. Not sure if it's all biological or something to do with lifestyle change (became a dad, new job etc.)

I believe there are some medical reasons for management to become more difficult as you get older but lack the expertise to let you know what. Someone like @Juicyj might be able to help.

I also feel your pain around family not really knowing what it's like. Something I've found really useful though is to make them listen, and even if they don't really get it they can at least (hopefully!) offer gentle words of encouragement.

One of the hardest things for me about diabetes is the fact that you can sometimes feel like the only one in the world who knows what it's like to have diabetes. For the first ten years of being diabetic the only other diabetic people I met were other kids in the paediatric waiting room. Talk about feeling isolated! But that's where finding places like this forum can really help. I've been a long-time reader here and the words I've read have been so comforting. Even the rants and moans - I can see that I'm not the only one feeling that way!

All the best, and listen to the others - get in touch with your local DSNs and get some specialist advice.

J
 

Juicyj

Expert
Retired Moderator
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Hi @emmawhit32 When things go astray you need to go back to basics, so write a food/insulin/BG diary, recording information like this helps to look for patterns, it will also help you when you do get to sit down with your nurse to review what's going on.

I would also try doing some basal testing, it's easy to do and will be able to help you work out what's happening with your basal requirements: http://www.salforddiabetescare.co.uk/index2.php?nav_id=1007 getting your basal requirements right is the foundation for good control. It may well be the case that your basal insulin isn't right for you but basal testing will help you identify what is going on - the testing can be broken down into 4 time frames and to really see what's going on you need to check each time period 3 times.

Make sure your nurse prioritises you and tell them you desperately need help, please also remember this is temporary things will improve so try not to feel too down, it will come right again, feel free to message me if I can help more.
 

donnellysdogs

Master
Messages
13,233
Type of diabetes
Type 1
Treatment type
Pump
Dislikes
People that can't listen to other people's opinions.
People that can't say sorry.
Some GPs (ie Peterborough) do not refer T1's to hospital unless they request it and even then the patient may have to show log books etc to get a referral....

You may have to insist, I hope not, but just be prepared.

There are huge differences in care between hospirals and GPs. You may be offered a chance of a Libre that you wouldnt get from a GP, if you had troubles with basals you could be iffered different ones that GPs really arent up to date with.

You need and are entitled to hospital consultant if you request it. There are other adnances like insulin pumps etc that GPs cannot offer you...

Even meters.... GPs are less likely to offer you the aviva expert and will just go for basic cheapest they can offer you..

Do log everything and get facts behind you to show..
 
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Gabrielle_Tai

Well-Known Member
Messages
185
Type of diabetes
Type 1
Treatment type
Insulin
Hi @emmawhit32 sorry to hear you're struggling. we're all here for you though so keep your chin up!

I'm also 32, T1 since 5. Similarly to you, I've noticed my control has suffered in the last few years. It seems that as soon as I turned 30 it became so much harder to stay on top of it. Not sure if it's all biological or something to do with lifestyle change (became a dad, new job etc.)

I believe there are some medical reasons for management to become more difficult as you get older but lack the expertise to let you know what. Someone like @Juicyj might be able to help.

I also feel your pain around family not really knowing what it's like. Something I've found really useful though is to make them listen, and even if they don't really get it they can at least (hopefully!) offer gentle words of encouragement.

One of the hardest things for me about diabetes is the fact that you can sometimes feel like the only one in the world who knows what it's like to have diabetes. For the first ten years of being diabetic the only other diabetic people I met were other kids in the paediatric waiting room. Talk about feeling isolated! But that's where finding places like this forum can really help. I've been a long-time reader here and the words I've read have been so comforting. Even the rants and moans - I can see that I'm not the only one feeling that way!

All the best, and listen to the others - get in touch with your local DSNs and get some specialist advice.

J

I feel very lucky to be born on the information technology age where i can connect with other with the same disease. I do wish when i reach 30( another 15 years to go) i will at least able to control my bs. Let hope technology for diabetic management get better.
 

emmawhit32

Active Member
Messages
40
Type of diabetes
Type 1
Treatment type
Insulin
Dislikes
Bullying if you have nothing nice to say don’t say anything!
Hi @emmawhit32 When things go astray you need to go back to basics, so write a food/insulin/BG diary, recording information like this helps to look for patterns, it will also help you when you do get to sit down with your nurse to review what's going on.

I would also try doing some basal testing, it's easy to do and will be able to help you work out what's happening with your basal requirements: http://www.salforddiabetescare.co.uk/index2.php?nav_id=1007 getting your basal requirements right is the foundation for good control. It may well be the case that your basal insulin isn't right for you but basal testing will help you identify what is going on - the testing can be broken down into 4 time frames and to really see what's going on you need to check each time period 3 times.

Make sure your nurse prioritises you and tell them you desperately need help, please also remember this is temporary things will improve so try not to feel too down, it will come right again, feel free to message me if I can help more.

Maybe I have been a bit slack with my eating recently I did have pasta for tea yesterday and that really upset me during the night! Think ill have to go carb easy and see if I can get myself right again! It’s just frustrating when you don’t get the numbers you want! Then you think why do I bother and want to eat a whole pizza lol