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New type 1 and feeling very unwell

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This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.

Colonelsanders

New Member
Relationship to Diabetes
Type 1
Hi I’m Amy and I was diagnosed with type 1 at the end of August this year. I had been suffering from severe leg and back pains for about 6 weeks prior to diagnosis and the pains have still not subsided. Neurologist has diagnosed it as peripheral neuropathy from having high blood glucose levels for months. I’m also generally not feeling well - loss of appetite, no energy and feeling nauseous all the time. I’m feeling very low about everything and would love to hear if anyone else felt like this and how long it lasted for. I used to be very active and outgoing but at the moment I can’t do any of the things I love. Thanks so much in advance x
 
Hi I’m Amy and I was diagnosed with type 1 at the end of August this year. I had been suffering from severe leg and back pains for about 6 weeks prior to diagnosis and the pains have still not subsided. Neurologist has diagnosed it as peripheral neuropathy from having high blood glucose levels for months. I’m also generally not feeling well - loss of appetite, no energy and feeling nauseous all the time. I’m feeling very low about everything and would love to hear if anyone else felt like this and how long it lasted for. I used to be very active and outgoing but at the moment I can’t do any of the things I love. Thanks so much in advance x
Hi Amy, welcome to the forum 🙂 Sorry to hear you are having problems :( It does sound like neuropathy, but hope fully it is just 'transient', and once your body has settled down into better blood sugar levels the pain will ease. I suffered this to some extent for about 3-4 months after my diagnosis but now only occasionally get a stinging/burning sensation in my toes (usually at night) when my control hasn't been as good as it could be.

What insulin regime are you on, and how did your diagnosis come about? I'd highly recommend getting a copy of the immensely useful and informative Type 1 Diabetes in Children Adolescents and Young People by Ragnar Hanas (doesn't matter how old you are, I was 49!). It covers all aspects of living with Type 1 and is written in a very clear, readable style 🙂

What are your blood sugar levels like at the moment? All the symptoms you describe could be related to high or fluctuating levels, and once you can get things more settled things should improve for you. It's a very big change you are having to get used to and it can be very different for people in how well and quickly they adapt. Please let us know if you have any questions or concerns and we will be more than happy to help 🙂
 
Hello and welcome Amy 🙂

I'm sorry to hear about your diagnosis and that you are feeling so unwell :(. It takes a long time for your body to get back to equilibrium after diagnosis even once an insulin supply has been established.

Prior to diagnosis your body has been in turmoil without insulin desperately trying to find enough energy from other sources to keep going. Every system in your body has been struggling with high glucose levels and high levels affect mood and outlook as well as causing physical problems but once your levels have got back into balance I'm sure things will improve and you'll regain your energy and start to feel better. It is a massive shock to be diagnosed and handed the running of your insulin supply but with time you'll start to feel more like the pre diagnosis you.

Have you got a diabetes team you are in contact with for advice on managing your levels and any other problems you're having? As Northerner says transient neuropathy is very painful but once glucose levels are more stable the symptoms and pain should start to disappear.

A diagnosis is a lot to take on at the same time as trying to recover from being so poorly but with time things will start to fit back into place. This forum is a great place for advice and support so please let us know how things are going for you.

I wish you well and hope you soon start to feel better 🙂
 
Hi Amy

Sorry to hear about your diagnosis. It takes time for things to settle down at the beginning, and it also takes a bit of time to get insulin doses correct. I certainly found that with insulin on board again I started to feel a lot better.

I would thoroughly recommend the book that Northerner suggested. I was diagnosed at 53 and nearly 10 years in it is still a great reference book with clear explanations.

Let us know how you w about your own insulin regime and have w you are managing this. Do ask any questions you have, as there is. Friendly bunch of helpful and knowledgable people on here.
 
Hi and welcome 🙂
Sorry to hear you're feeling so rough :( it took me months to feel even slightly normal again. It's a lot to get used to, but you will get there and hopefully the pains in your legs will get better soon.
 
Thank you so much everyone for your kind and reassuring words. My diagnosis came about because I started having these terrible leg and back pains but unfortunately the doctors did the blood test and it got lost in the system for nearly 2 months. In the meantime they insisted the pains were due to anxiety and stress and put me on anti depressants and refused to re-do the blood test. When they finallly got my initial blood test result through it was 18 after 14 hours of fasting!

It was quite a shock but explained a lot - my running times had been slowing since Christmas and I couldn’t understand why!

My levels are still fluctuating between 5 and 13 - I can have the same meal two days in a row and take the same insulin but it have a completely different effect on my levels. I’m hoping in time that will stabilise. I’m on levemir twice a day and novorapid before meals.

I will definitely order that book! One question I do have is about how to put weight on - I’ve always been slim but lost another stone and a half in the weeks before diagnosis and now my BMI is too low. I’ve been told I need to prioritise gaining weight but I’m finding it difficult when also trying to limit carb intake and all the guidance seems to be about losing weight. Any advice would be hugely appreciated.

Thank you x
 
Thank you so much everyone for your kind and reassuring words. My diagnosis came about because I started having these terrible leg and back pains but unfortunately the doctors did the blood test and it got lost in the system for nearly 2 months. In the meantime they insisted the pains were due to anxiety and stress and put me on anti depressants and refused to re-do the blood test. When they finallly got my initial blood test result through it was 18 after 14 hours of fasting!

It was quite a shock but explained a lot - my running times had been slowing since Christmas and I couldn’t understand why!

My levels are still fluctuating between 5 and 13 - I can have the same meal two days in a row and take the same insulin but it have a completely different effect on my levels. I’m hoping in time that will stabilise. I’m on levemir twice a day and novorapid before meals.

I will definitely order that book! One question I do have is about how to put weight on - I’ve always been slim but lost another stone and a half in the weeks before diagnosis and now my BMI is too low. I’ve been told I need to prioritise gaining weight but I’m finding it difficult when also trying to limit carb intake and all the guidance seems to be about losing weight. Any advice would be hugely appreciated.

Thank you x
Ooh, you're a runner! 🙂 Me too! I was diagnosed a week before I was due to run the Stockholm Marathon! 😱 Like you, my times had been deteriorating for several months - three months before diagnosis I ran my slowest ever half marathon and finished three paces ahead of the sweep up ambulance 😱 I put it down to overtraining. I also lost about 20 pounds in the 18 months prior to my diagnosis - put that down to the training too - then lost 17 pounds in the 3 days leading up to diagnosis when things really went haywire 😱

The good news is that I am back running again and currently running at the pace I was 20 years ago! I've run several half marathons and Great South Runs since diagnosis and have never felt fitter or healthier - well, certainly not for many years - so don't lose hope 🙂

As for weight gain, I was in a similar position to you. I was always on the slim side, but at diagnosis my BMI was 17. I didn't consciously try and do anything to regain weight, just let it build back on naturally. For me it took about 2 years, I would say, to get back up to my 'ideal' weight and I currently have a BMI of 22.4 🙂 One thing I have found is that I started to snack on peanuts instead of my former carby snacks, and I think they really helped put the weight back on. They are quite high calorie, but contain protein and good fats, and are relatively low carb. Cheese is also a good choice as it will give you calories without affecting your blood sugar levels 🙂

Regarding your levels - it's not unusual to have confusing readings in the early months. There's a possibility that your pancreas may still be producing small amounts of insulin, but erratically. This is sometimes termed the 'honeymoon' period, and can take an indeterminate amount of time to disappear - usually weeks or maybe a few months, but I have encountered people whose honeymoon has lasted for up to two years. Plenty of testing before and after eating, recording of carbs in your meals each day, you will build up experience of how your body reacts over time, but it can be quite a slow learning process. Don't worry though, your numbers are not excessive. Have you been offered a diabetes education course and/or been taught how to count carbs so you can match your insulin doses to your food choices? If not, do ask your DSN about it 🙂
 
Hi there, Amy, and welcome.🙂

Sorry to hear about your diagnosis and that you're feeling rough. I felt pretty awful for the first six months after diagnosis, tbh. As for the weight, I eventually put the stone I'd lost back on by sticking to a meal-time routine and not skipping any meals...it took a while, but I got there eventually!🙄

You're definitely in the right place for support and info. 😛
 
Ooh, you're a runner! 🙂 Me too! I was diagnosed a week before I was due to run the Stockholm Marathon! 😱 Like you, my times had been deteriorating for several months - three months before diagnosis I ran my slowest ever half marathon and finished three paces ahead of the sweep up ambulance 😱 I put it down to overtraining. I also lost about 20 pounds in the 18 months prior to my diagnosis - put that down to the training too - then lost 17 pounds in the 3 days leading up to diagnosis when things really went haywire 😱

The good news is that I am back running again and currently running at the pace I was 20 years ago! I've run several half marathons and Great South Runs since diagnosis and have never felt fitter or healthier - well, certainly not for many years - so don't lose hope 🙂

As for weight gain, I was in a similar position to you. I was always on the slim side, but at diagnosis my BMI was 17. I didn't consciously try and do anything to regain weight, just let it build back on naturally. For me it took about 2 years, I would say, to get back up to my 'ideal' weight and I currently have a BMI of 22.4 🙂 One thing I have found is that I started to snack on peanuts instead of my former carby snacks, and I think they really helped put the weight back on. They are quite high calorie, but contain protein and good fats, and are relatively low carb. Cheese is also a good choice as it will give you calories without affecting your blood sugar levels 🙂

Regarding your levels - it's not unusual to have confusing readings in the early months. There's a possibility that your pancreas may still be producing small amounts of insulin, but erratically. This is sometimes termed the 'honeymoon' period, and can take an indeterminate amount of time to disappear - usually weeks or maybe a few months, but I have encountered people whose honeymoon has lasted for up to two years. Plenty of testing before and after eating, recording of carbs in your meals each day, you will build up experience of how your body reacts over time, but it can be quite a slow learning process. Don't worry though, your numbers are not excessive. Have you been offered a diabetes education course and/or been taught how to count carbs so you can match your insulin doses to your food choices? If not, do ask your DSN about it 🙂

Yes I love running and I really miss it at the moment. I can’t wait to get back to it but will need to learn about what insulin to take and foods to eat with exercise.

Thank you for the tips on diet - cheese and nuts it is then! I’ve not been referred for the DAFNE course yet and was told by the consultant I wouldn’t be doing it until about a year after diagnosis - this seems like a long time to me. Did you have the same wait time?
 
Yes I love running and I really miss it at the moment. I can’t wait to get back to it but will need to learn about what insulin to take and foods to eat with exercise.

Thank you for the tips on diet - cheese and nuts it is then! I’ve not been referred for the DAFNE course yet and was told by the consultant I wouldn’t be doing it until about a year after diagnosis - this seems like a long time to me. Did you have the same wait time?
I think with DAFNE they do like your levels and doses to be reasonably settled, and many people have what is known as a 'honeymoon period' referred to earlier, where their pancreas is still spluttering out occasional insulin - this can make things a little erratic.

I didn't do the DAFNE course though, mine was just a simple 3 afternoons a week apart (I think, it's a bit of a blur now!) and it took place about 2 months after diagnosis. I did learn a few things, but it was generally pretty basic and I'd already sussed out adjusting doses to match the carbs in my food. Much of diabetes is down to learning from first-hand experience and making any adjustments next time around 🙂

I did learn quite a bit of the science of diabetes and exercise from the Diabetic Athlete's Handbook, which helped me when getting back running 🙂

If you're an experienced runner then your body will probably be able to manage quite a bit of exercise naturally, it tends to be new forms of exercise e.g strength training or rowing when you are a runner, that can cause you to drop low. For example, I can manage about 7 miles without my blood sugar levels dropping, but then need to top up a bit with gels or jelly babies to keep levels elevated. I generally inject and eat about 1-1.5 hours before going for a run so I have circulating insulin and food digesting during the run. It's not advised to exercise if your levels are above 17 mmol/l as this can paradoxically raise your levels higher - I'm fortunate because I never experience levels that high.

Any more questions, happy to help! 🙂
 
Didn't take me a year Amy - took me 30+ years cos they hadn't invented it way back when! However although I obviously knew a lot of it before - it was rounding it up and putting it all in the right order that I couldn't do on my own - so it was a breath of fresh ar and in the n=main completely and utterly logical.

I say 'in the main' cos dear old D has a nasty habit of chucking us curved balls from time to time and we have to try and engage our Sensible Heads to try and deal with em. Really until you've had D for a while at least, your body has settled down a bit plus you have got used to responding appropriately to its needs - it could be a bit much. (Bit like expecting you to do your Applied Maths A level a month after you start senior school and haven't yet even nodded to a simultaneous equation in passing! LOL)
 
Welcome to the forum, @Colonelsanders, from a female who developed type 1 diabetes in adulthood and didn't want to give up sports. I've never been very competitive, but enjoy orienteering, parkruns, cycling, fell walking, mountain marathons etc.
There are a couple of sports websites which are very useful for people with type 1 diabetes who enjoy sports:
www.runsweet.com - good for both the physiology of exercise with insulin
www.teambloodglucose.com - good for people with either type 1 or type 2 diabetes.
There are some sports courses eg Animas at Loughborough University, and Leeds Beckett University, which runs its own evening sessions and is planning a weekend course.
There are several Facebook groups for specific activities with diabetes eg parkrun, outdoor activities, sports in general etc.
 
Hi Amy it does settle down and u can still do everything u used to . I’ve had type 1 for 25 years now I’ve had lots of surgeries but still have fun go on holiday ride motor bikes and work full time so life really does go on as long as you control it and don’t let it get to you take it by the throat and put it in it’s place it will all settle down soon and I think most of us will tell u the same
 
Hi Amy and welcome.
I have met some people who were put on DAFNE fairly soon after diagnosis. I had to wait until things had settled, and as my 'honeymoon' went on for ages I did not get on the course until 18 months in. I still remember the impact of it even 10 years on. One thing in particular was meeting Ther people living with T1.
In the meantime just come on here and ask.
 
Thank you so much everyone for your kind and reassuring words. My diagnosis came about because I started having these terrible leg and back pains but unfortunately the doctors did the blood test and it got lost in the system for nearly 2 months. In the meantime they insisted the pains were due to anxiety and stress and put me on anti depressants and refused to re-do the blood test. When they finallly got my initial blood test result through it was 18 after 14 hours of fasting!

It was quite a shock but explained a lot - my running times had been slowing since Christmas and I couldn’t understand why!

My levels are still fluctuating between 5 and 13 - I can have the same meal two days in a row and take the same insulin but it have a completely different effect on my levels. I’m hoping in time that will stabilise. I’m on levemir twice a day and novorapid before meals.

I will definitely order that book! One question I do have is about how to put weight on - I’ve always been slim but lost another stone and a half in the weeks before diagnosis and now my BMI is too low. I’ve been told I need to prioritise gaining weight but I’m finding it difficult when also trying to limit carb intake and all the guidance seems to be about losing weight. Any advice would be hugely appreciated.

Thank you x
All my life I have been slim. But know I have been on a pump & much better controlled I am putting weight on. Being in control is the answer for a T1 to put weight on. Good luck. Welcome 🙂
 
Thank you everyone - it is so reassuring to hear from you all, I am so glad I posted 🙂 Sometimes you can feel like you're the only one going through this and its very lonely, but knowing others have and have come out the other side leading normal lives gives me so much hope for the future.

Thank you x

Well said Amy. It can be a real help to have people around you who ‘get it’ (even if they are only virtual connections). There are literally *centuries* of diabetes experience on the forum, all waiting to share experiences, strategies and support with you.

Hope things settle or you really soon and you begin to feel better in yourself. Do continue to post questions or rants here - Diabetes can be confusing and frustrating, especially if your pancreas is still occasionally sputtering and kicking out insulin. Long term that might be useful though, after a while you may have a small, but more stable, trickle of insulin from a few remaining beta cells which might smooth out your levels a little. I believe this can happen in some people diagnosed outside of childhood.
 
That has always fascinated me Mike - I have to say it's something I've always wondered about ever since Richard157 told us about the research at the Mayo institute in Boston (Mass.) which showed that some of their 'Golden Oldies' were still producing a trickle even after 70 years of diabetes. Most of them would be diagnosed as children though cos otherwise they couldn't have had D that long, could they! It didn't actually prove that it protects you from complications but bearing in mind these folk live all over the US of A so like Richard, would have to travel some considerable distance to get to Boston in the first place, the complications that they did have couldn't have been 'dire' could they? Also the tests they had to carry out to find this out take best part of a day in a hospital bed attached to shedloads of scientific equipment over hours and hours, would not be suitable for 'sick old people' unless it was a dire emergency. He found it was extremely tiring.

Just makes me curious whether it's that which has protected some of us to some extent - or whether it's the animal insulins we were on in the past?
 
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