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Please Remember: Members are only permitted to share their own experiences. Members are not qualified to give medical advice. Additionally, everyone manages their health differently. Please be respectful of other people's opinions about their own diabetes management.
Hi, I am mandy moo and in need of some support.
- Thread starter Mandy moo
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rebrascora
Well-Known Member
- Relationship to Diabetes
- Type 1
- Pronouns
- She/Her
Hi Mandy and welcome
That must have been very traumatic! How are you managing? There are some members here who have had similar surgery I believe and will hopefully be along to offer support and guidance from their personal experience. It may help to know what medication you are on?
I hope you find this forum as beneficial as I have. Getting advice from people who are living with the same condition is so much more helpful than from a health care professional who is just working from theory. Are there particular issues that you need help with? Feel free to ask as many questions as you have, no matter how basic. Usually at least one other person will have come across a similar situation and offer some support and advice.
That must have been very traumatic! How are you managing? There are some members here who have had similar surgery I believe and will hopefully be along to offer support and guidance from their personal experience. It may help to know what medication you are on?
I hope you find this forum as beneficial as I have. Getting advice from people who are living with the same condition is so much more helpful than from a health care professional who is just working from theory. Are there particular issues that you need help with? Feel free to ask as many questions as you have, no matter how basic. Usually at least one other person will have come across a similar situation and offer some support and advice.
Hi, I am on novarapid and carb counting and also levermir twice daily. I am experiencing lots of hypos as I am hypo unaware. Hoping to get freestyle libre next week which should help a lot. Did anyone else suffer with servere depression when first diagonied.
rebrascora
Well-Known Member
- Relationship to Diabetes
- Type 1
- Pronouns
- She/Her
I have suffered with stress and depression for years before diagnosis but it definitely adds to it and many people seem to experience depression after diabetes diagnosis. It is a big shock to the system because it affects so many aspects of life.
We are on the same insulin. I find it helps to eat a very low carb diet in order to reduce the risk of hypos..... less carbs, less NovoRapid required therefore the margin of miscalculation is smaller because you are multiplying by a smaller number. Not saying I don't still get them but they are less often or severe. I was initially misdiagnosed as Type 2 so I had 5-6 weeks of trying to control it with oral medication and diet before they tested me for Type 1, so I got used to low carb eating before I started on insulin. The HCPs kept telling me to just eat normally but things kept going haywire when I did and I found the hypos frightening, so I went back to very low carb and don't eat bread or pasta or rice and just a couple of small potatoes on an evening.
It might be helpful to run your BG higher that normal for a while to try to re-instigate hypo awareness. Most of us come into diabetes with high BGs so our bodies are used to running higher than usual and therefore our brain senses us getting low, sometimes before we even go below 4. You might be a bit different since I would guess that your pancreas was producing insulin and regulating your BG prior to surgery, so one day you were running at reasonably normal levels and then you were having to inject insulin to try to balance it at normal range which is quite tricky.
Have you had a DAFNE (Dose Adjustment For Normal Eating) course? If not, ask to be put forward for one.
Good luck with getting a Libre. Everyone here on the forum seems to love them. I am low income but have been toying with self funding from my savings for the past few months but holding off in the hope that the NHS will provide one. I will be interested to hear how you get on with it.
We are on the same insulin. I find it helps to eat a very low carb diet in order to reduce the risk of hypos..... less carbs, less NovoRapid required therefore the margin of miscalculation is smaller because you are multiplying by a smaller number. Not saying I don't still get them but they are less often or severe. I was initially misdiagnosed as Type 2 so I had 5-6 weeks of trying to control it with oral medication and diet before they tested me for Type 1, so I got used to low carb eating before I started on insulin. The HCPs kept telling me to just eat normally but things kept going haywire when I did and I found the hypos frightening, so I went back to very low carb and don't eat bread or pasta or rice and just a couple of small potatoes on an evening.
It might be helpful to run your BG higher that normal for a while to try to re-instigate hypo awareness. Most of us come into diabetes with high BGs so our bodies are used to running higher than usual and therefore our brain senses us getting low, sometimes before we even go below 4. You might be a bit different since I would guess that your pancreas was producing insulin and regulating your BG prior to surgery, so one day you were running at reasonably normal levels and then you were having to inject insulin to try to balance it at normal range which is quite tricky.
Have you had a DAFNE (Dose Adjustment For Normal Eating) course? If not, ask to be put forward for one.
Good luck with getting a Libre. Everyone here on the forum seems to love them. I am low income but have been toying with self funding from my savings for the past few months but holding off in the hope that the NHS will provide one. I will be interested to hear how you get on with it.
Flower
Well-Known Member
- Relationship to Diabetes
- Type 1
Hello and welcome @Mandy moo 🙂
You've been through a really tough time and a diabetes diagnosis alone without the rest of the major surgery takes a big toll physically and emotionally so take as much support and advice as you can from your medical team and ask any questions you need to on here. Good to see are getting the Libre to give you more information on your blood sugar.
If you type either pancreatectomy or Type 3c into the search box at the top right hand side of this page, there a a number of threads and posts from people who have been through the same or similar to yourself. I'll tag @eggyg as I think she's had a partial pancreatectomy - sorry if I'm incorrect @eggyg!
Best Wishes.
You've been through a really tough time and a diabetes diagnosis alone without the rest of the major surgery takes a big toll physically and emotionally so take as much support and advice as you can from your medical team and ask any questions you need to on here. Good to see are getting the Libre to give you more information on your blood sugar.
If you type either pancreatectomy or Type 3c into the search box at the top right hand side of this page, there a a number of threads and posts from people who have been through the same or similar to yourself. I'll tag @eggyg as I think she's had a partial pancreatectomy - sorry if I'm incorrect @eggyg!
Best Wishes.
TheClockworkDodo
Well-Known Member
- Relationship to Diabetes
- Type 1
Hello @Mandy moo and welcome to the forum 🙂
@pottersusan has had her pancreas and spleen removed, so I'm tagging her too. There are definitely others on here, so you are not alone. The Libre will help with the hypo unawareness (I have limited hypo awareness and I find it really helpful), but do be aware that it's not 100% reliable so you will still need to do a fair amount of testing. A CGM would be better for complete hypo unawareness (in that it has an alarm which goes off when you hypo), but I know pottersusan had to fight to get one of those. The Libre is much better than nothing though.
@pottersusan has had her pancreas and spleen removed, so I'm tagging her too. There are definitely others on here, so you are not alone. The Libre will help with the hypo unawareness (I have limited hypo awareness and I find it really helpful), but do be aware that it's not 100% reliable so you will still need to do a fair amount of testing. A CGM would be better for complete hypo unawareness (in that it has an alarm which goes off when you hypo), but I know pottersusan had to fight to get one of those. The Libre is much better than nothing though.
eggyg
Well-Known Member
- Relationship to Diabetes
- Type 3c
Hi @Mandy moo @Flower is correct I had a partial ( distal) pancreatectomy and splenectomy almost 12 years ago. Mine was also to prevent pancreatic cancer, they discovered a tumour and it had to go, luckily after analysis is was pre cancerous. I didn’t become diabetic until three years later believe it or not. Ask as many questions as you wish or PM me if you prefer. Elaine.
SB2015
Well-Known Member
- Relationship to Diabetes
- Type 1
Welcome to the forum @Mandy moo .
Like you I had not used any forums before coming here, and this is still my only one. There is plenty of support if you get stuck with anything techy. I have learnt most of what I know about my Diabetes from others on here, so I hope that you find it as useful.
You have certainly been through the mill, and with no pancreas you are straight into having no insulin, with no lead in. So there is a lot to learn very quickly, but it is manageable, and we are here to help you along the way in any way that you can.
If they offer you a Libre, take up their offer. A prescription for this is hard to come by and it really does help inform you about what is happening to your glucose levels.
Whilst I know that the cause of your ‘T1’ is different but I think that you May find the book Type 1 Diabetes in Children Adolescents and Young Adults by Ragnar Hanas. Ignore the age reference I was diagnosed at 53 and I found it very useful, with clear explanations, good index, and very practical.
It is not uncommon for depressions to come along with Diabetes, or for other reasons. It hit me after a bout of other illness that caused me more difficulties with my Diabetes and I eventually asked for help. I am glad that I did. Your specialist team are there to help you, be honest with them, and they will help you manage this. I also got a lot of support from people on here, both practical and emotional. Keep in touch.
Like you I had not used any forums before coming here, and this is still my only one. There is plenty of support if you get stuck with anything techy. I have learnt most of what I know about my Diabetes from others on here, so I hope that you find it as useful.
You have certainly been through the mill, and with no pancreas you are straight into having no insulin, with no lead in. So there is a lot to learn very quickly, but it is manageable, and we are here to help you along the way in any way that you can.
If they offer you a Libre, take up their offer. A prescription for this is hard to come by and it really does help inform you about what is happening to your glucose levels.
Whilst I know that the cause of your ‘T1’ is different but I think that you May find the book Type 1 Diabetes in Children Adolescents and Young Adults by Ragnar Hanas. Ignore the age reference I was diagnosed at 53 and I found it very useful, with clear explanations, good index, and very practical.
It is not uncommon for depressions to come along with Diabetes, or for other reasons. It hit me after a bout of other illness that caused me more difficulties with my Diabetes and I eventually asked for help. I am glad that I did. Your specialist team are there to help you, be honest with them, and they will help you manage this. I also got a lot of support from people on here, both practical and emotional. Keep in touch.
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