Newly diagnosed

[Sandra Peppa]

Hi, after months of not knowing what wasw arong with me I am now diagnosed as type 1 late onset diabetic. at 59.
Thankfully I had a good doctor knew my brother was the same at 57, and she got the right tests done and referred me to a local clinic.
I have now been told that I am in stage 2 of 3 and currently not taking insulin until my baseline reaches 7on a regular basis.
My pancreas is still working a bit and I am regulating my diet with a total of 150 carbs spread out per day.
The doctor admitted that this was all new to him as he as he usually sees late onset when it is time for insulin and the patient is very unwell (being undiagnosed, or thought of as type 2).
Is there anyone else out there in the same stage or who has gone through this stage, as I would love to hear from you.
I keep being told that I am okay and won't be neading insulin for months, however I do get the highs and lows and feel horrid when this happens.
I don't know when my pancreas is going to choose to work and this makes it difficult to monitor what I eat and when.
Any advice would be great to receive.
Many thanks
Sandra

 

[Circuspony]

I was diagnosed at 43 but I went downhill pretty quickly so they got me on insulin.

Are you in the UK? If so push to be under the care of your local hospital and not the GP. They prefer to start insulin earlier because it has been shown to take pressure off the pancreas. I needed tiny doses in the early years, but without it I was all over the place even without eating.

 

[Sandra Peppa]

Thanks for the reply. I’m with a diabetic centre and not the GP. However they don’t want to start me on insulin as I keep going low regularly.
I have heard of using the insulin to take pressure off the pancreas. So I will talk to them to ask more about it.
How did your journey progress, and where are you now?
I really feel like I’m in a no man’s land and not sure how long I’m going to be there?
Thanks again

 

[Melgar]

I would be very interested too. I went on a low carb (35 gms a day) I lost 35lbs since last May. I am now at the low end of normal weight wise. The pic of me was a month ago in Palm Springs, California. I exercise everyday in a big push to get my blood sugars down. I’ve been exercising like crazy since last May. My last Ac1 results (Just a week before Christmas) was very disappointing. I was shocked as I was expecting it to be in the low 5’s. From pre weight loss in March to just before Christmas my Ac1’s dropped from 6.7% to 6.3% . Not that high I know but sheesh something is a miss. A friend of mine was on insulin, he lost 40 lbs in weight and is now in remission! He wasn’t even exercising. What’s going on I ask myself. I stopped reading and participating on this site because I got very stressed with everybody’s success on low carb and weight loss. Don’t get me wrong I am very happy for each and everyone and much deserved. My brother is LADA and on insulin. His blood sugars started to go up fast after a short fever after being diagnosed with T2 for a few years back before he was diagnosed with LADA. I am pushing for answers so heading back to my Dr next week. It’s a big push because I am getting slight pins and needles in my fingers and toes. I’m on the verge of giving up on the low carb as it’s made no difference at all. I try and put a positive spin on it as I do feel great but worried at the same time.

 

[Sandra Peppa]

I would be very interested too. I went on a low carb (35 gms a day) I lost 35lbs since last May. I am now at the low end of normal weight wise. The pic of me was a month ago in Palm Springs, California. I exercise everyday in a big push to get my blood sugars down. I’ve been exercising like crazy since last May. My last Ac1 results (Just a week before Christmas) was very disappointing. I was shocked as I was expecting it to be in the low 5’s. From pre weight loss in March to just before Christmas my Ac1’s dropped from 6.7% to 6.3% . Not that high I know but sheesh something is a miss. A friend of mine was on insulin, he lost 40 lbs in weight and is now in remission! He wasn’t even exercising. What’s going on I ask myself. I stopped reading and participating on this site because I got very stressed with everybody’s success on low carb and weight loss. Don’t get me wrong I am very happy for each and everyone and much deserved. My brother is LADA and on insulin. His blood sugars started to go up fast after a short fever after being diagnosed with T2 for a few years back before he was diagnosed with LADA. I am pushing for answers so heading back to my Dr next week. It’s a big push because I am getting slight pins and needles in my fingers and toes. I’m on the verge of giving up on the low carb as it’s made no difference at all. I try and put a positive spin on it as I do feel great but worried at the same time.

Hi
Sorry I thought that I had replied to this over the weekend.
I do hope that you get some help from your doctors when you see them. If you have not had so, get the antibody tests, I had GAD and zinc transporter 8. After this a real time glucose test, mine was a tolererance test which showed that I was type 1 diabetic.
Througout this time my AC1 was not hot high at 45 but I was feeling terrible.
It would also help you if you had the sensor monitors, like the libre2, as this can guide you when you need to eat and when to exercise.
I am not a doctor, and please do not take anything that I mention as medical advice, but only what has helped me. Although I am still very much in 'no mans land'. I feel more confident moving forward now.
Good luck and let me know how you get on.

 

[Melgar]

Hi
Sorry I thought that I had replied to this over the weekend.
I do hope that you get some help from your doctors when you see them. If you have not had so, get the antibody tests, I had GAD and zinc transporter 8. After this a real time glucose test, mine was a tolererance test which showed that I was type 1 diabetic.
Througout this time my AC1 was not hot high at 45 but I was feeling terrible.
It would also help you if you had the sensor monitors, like the libre2, as this can guide you when you need to eat and when to exercise.
I am not a doctor, and please do not take anything that I mention as medical advice, but only what has helped me. Although I am still very much in 'no mans land'. I feel more confident moving forward now.
Good luck and let me know how you get on.

Thanks Sandra for your reply Great info and great that you got the right diagnosis. It seems to be a challenge to get the tests done if your blood sugars are not going wild or you are not in DKA. That's how my brother got diagnosed. He lost a ton of weight and was in DKA with a blood sugar reading up in the 40's, 48 mmol/Ls or something like that. He was being treated for years as a type 2, he never tested, but then his blood sugars shot up and had all the weight loss. The weight loss is what sent him to the Dr's. I do purchase the Libre2 cgm's from time to time, but they are expensive. I'm currently living in Western Canada and it's hard to get those particular tests unless your blood sugars are extremely high. I do want to return to the UK at some point. I miss it. I get hypos too, but I manage those quite well with a carby drink at night. The hypos, I think, are due to unconfirmed Coeliac. So I may already have an autoimmune issue. Thanks again for your reply.

 

[ianstead]

Hi, after months of not knowing what wasw arong with me I am now diagnosed as type 1 late onset diabetic. at 59.
Thankfully I had a good doctor knew my brother was the same at 57, and she got the right tests done and referred me to a local clinic.
I have now been told that I am in stage 2 of 3 and currently not taking insulin until my baseline reaches 7on a regular basis.
My pancreas is still working a bit and I am regulating my diet with a total of 150 carbs spread out per day.
The doctor admitted that this was all new to him as he as he usually sees late onset when it is time for insulin and the patient is very unwell (being undiagnosed, or thought of as type 2).
Is there anyone else out there in the same stage or who has gone through this stage, as I would love to hear from you.
I keep being told that I am okay and won't be neading insulin for months, however I do get the highs and lows and feel horrid when this happens.
I don't know when my pancreas is going to choose to work and this makes it difficult to monitor what I eat and when.
Any advice would be great to receive.
Many thanks
Sandra

Hi Sandra
I am now 75 and developed diabetes at about the age of 57. For about 3 years they thought I was type 2 diabetic until a new gp had me tested and it was discovered that I was actually late onset type 1 and the metformin that I was on was no good at all. I have never been overweight and have taken exercise regularly. My pancreas was producing some insulin initially and when I was put on insulin injections I needed very little. As the years progressed I needed more insulin for the carbs that I ate. I am now on an omnipod pump and find that I manage it well with the libre 2 sensors telling me what my bg is. I do not like the lows that I get as it makes me feel unwell.
Regards
Ian

 

[Marikev]

Hi, after months of not knowing what wasw arong with me I am now diagnosed as type 1 late onset diabetic. at 59.
Thankfully I had a good doctor knew my brother was the same at 57, and she got the right tests done and referred me to a local clinic.
I have now been told that I am in stage 2 of 3 and currently not taking insulin until my baseline reaches 7on a regular basis.
My pancreas is still working a bit and I am regulating my diet with a total of 150 carbs spread out per day.
The doctor admitted that this was all new to him as he as he usually sees late onset when it is time for insulin and the patient is very unwell (being undiagnosed, or thought of as type 2).
Is there anyone else out there in the same stage or who has gone through this stage, as I would love to hear from you.
I keep being told that I am okay and won't be neading insulin for months, however I do get the highs and lows and feel horrid when this happens.
I don't know when my pancreas is going to choose to work and this makes it difficult to monitor what I eat and when.
Any advice would be great to receive.
Many thanks
Sandra

Hei Sandra, I was diagnosed with type 1 18 months ago now, at the grand old age of 68! Had been going to see my GP’s for months to try and get to the bottom of ‘tummy troubles’, OK acute and urgent diarrhoea. Somebody noticed my thyroid levels were a little bit out of range, was back and forth to have those checked and suddenly my blood sugar level went very high.. 31! My then GP tried to call me, then my husband, but our phones were on charge, on silent.. so an ambulance crew were despatched to our house! We woke up on a fine summer morning to find two burly ambulance crew on our landing! we live in rural Norway and don’t lock our doors!
was told I should call my GP who told me to go to the main hospital asap, about a 2 hour trip away.
was directed to the equivalent of A& E at the hospital, where before I knew it they had me in a bed, on an insulin drip and putting an ‘inmate’s’ wristband on me. Was in hospital for 5 days learning how to finger stick and inject insulin. They wouldn’t tell me what sort of diabetes it was until they had done the blood tests and 2 weeks later I had a phone call from a senior doctor telling me the tests had come back as type 1, and he was very sorry!
I asked in A&E if by losing some more weight, exercising more and eating better I could come off the insulin and was told an emphatic ‘NO’.
since then have been sent Libre 2 CGM’s and have my long term insulin changed to Tresiba, which has stopped the morning spikes I had with the other insulin they started me on. Use very little insulin during the day.
started off following the regime set in the hospital of 4 meals a day, but since then have worked to my blood sugar rather than regimented meal times.
a fellow type 1 at work told me I now I had to now ‘eat clean’ ie meat and fish and vegetables and not so much of the pizzas and cakes that are prolific here.
Have been blessed with a wonderful diabetic specialist nurse who has given advise on how I can exercise without going hypo.
had my driving licence revoked for 6 weeks and am terrified of losing it again, if I have a hospitalising hypo!
been offered an insulin pump, but because I seem to need so little insulin atm I don’t think for me it is worth the hassle. In my view more tech=more stress.
when I was first let back into the wild I was keeping my BS around 5, but then realised I felt rubbish, so I now prefer it more around 6-8, depending on how active I am. Managed to miss a ferry yesterday as I still forget to allow the extra time getting out the house to check and sometimes fix blood sugar before driving! I keep a pouch of baby yoghurt in the car door, if my BS decides it’s going to drop suddenly!
I think I seem to be at a slightly later stage to you, so not sure how helpful all this is for you. I am seeing a diabetic specialist doctor next week, for the first time since diagnosis, so hoping to have some questions answered.
one of my problems has been that the medics have assumed that being type 1 I was diagnosed years ago and assume I know what I’m doing! But they have been checking out other things to make sure I have no other auto immune diseases. Had all the scans, and some on my liver! But since I stopped taking alcohol it seems the high liver function tests have come back to a normal range.

 

[Melgar]

Hi Marikev, I have questions lol. I feel something isn't right with my body. Were you diagnosed pre-diabetes , T2 first? And your 'tummy troubles', did you get stomach ache, GERD those kind of symptoms? I have numb fingers, Reynards I think, pins and needles in my fingers and toes, it has suddenly come on, like it could be secondary Reynards, but could be due to diabetes. I have moderate leukocytes in my urine. They fluctuate between trace and moderate. Plus I get these symmetrical skin rashes and low level fevers. The Dr says the skin thing is an immune/inflammatory response to gluten. I am 100% gluten free as I am highly sensitive to it. It's probably Coeliac, but I have refused the gluten challenge as I get too sick. Despite a general sense of feeling great in my head I can get seriously fatigued to a point where I cannot do anything but go lay down.my muscles and joints ache. I might be joining all the dots and creating a rabbit instead of a football. The rabbit may be sending me after the rabbit down a hole. Who knows, but I have a lot of autoimmune in my family so I am minded to think LADA and not T2 but until my sugars go wild I am in no mans land.

 

[Sandra Peppa]

Hi Sandra
I am now 75 and developed diabetes at about the age of 57. For about 3 years they thought I was type 2 diabetic until a new gp had me tested and it was discovered that I was actually late onset type 1 and the metformin that I was on was no good at all. I have never been overweight and have taken exercise regularly. My pancreas was producing some insulin initially and when I was put on insulin injections I needed very little. As the years progressed I needed more insulin for the carbs that I ate. I am now on an omnipod pump and find that I manage it well with the libre 2 sensors telling me what my bg is. I do not like the lows that I get as it makes me feel unwell.
Regards
Ian

Hi Ian
Thank you for sharing this with me. How long were you on small doses of insulin? Its the journey throuhg the process which seems daunting at the moment. Glad to hear that you are using the omnipod pump now as this is quite new? How are you getting on with it?

 

[Sandra Peppa]

Hi Marikev, I have questions lol. I feel something isn't right with my body. Were you diagnosed pre-diabetes , T2 first? And your 'tummy troubles', did you get stomach ache, GERD those kind of symptoms? I have numb fingers, Reynards I think, pins and needles in my fingers and toes, it has suddenly come on, like it could be secondary Reynards, but could be due to diabetes. I have moderate leukocytes in my urine. They fluctuate between trace and moderate. Plus I get these symmetrical skin rashes and low level fevers. The Dr says the skin thing is an immune/inflammatory response to gluten. I am 100% gluten free as I am highly sensitive to it. It's probably Coeliac, but I have refused the gluten challenge as I get too sick. Despite a general sense of feeling great in my head I can get seriously fatigued to a point where I cannot do anything but go lay down.my muscles and joints ache. I might be joining all the dots and creating a rabbit instead of a football. The rabbit may be sending me after the rabbit down a hole. Who knows, but I have a lot of autoimmune in my family so I am minded to think LADA and not T2 but until my sugars go wild I am in no mans land.

Hei Sandra, I was diagnosed with type 1 18 months ago now, at the grand old age of 68! Had been going to see my GP’s for months to try and get to the bottom of ‘tummy troubles’, OK acute and urgent diarrhoea. Somebody noticed my thyroid levels were a little bit out of range, was back and forth to have those checked and suddenly my blood sugar level went very high.. 31! My then GP tried to call me, then my husband, but our phones were on charge, on silent.. so an ambulance crew were despatched to our house! We woke up on a fine summer morning to find two burly ambulance crew on our landing! we live in rural Norway and don’t lock our doors!
was told I should call my GP who told me to go to the main hospital asap, about a 2 hour trip away.
was directed to the equivalent of A& E at the hospital, where before I knew it they had me in a bed, on an insulin drip and putting an ‘inmate’s’ wristband on me. Was in hospital for 5 days learning how to finger stick and inject insulin. They wouldn’t tell me what sort of diabetes it was until they had done the blood tests and 2 weeks later I had a phone call from a senior doctor telling me the tests had come back as type 1, and he was very sorry!
I asked in A&E if by losing some more weight, exercising more and eating better I could come off the insulin and was told an emphatic ‘NO’.
since then have been sent Libre 2 CGM’s and have my long term insulin changed to Tresiba, which has stopped the morning spikes I had with the other insulin they started me on. Use very little insulin during the day.
started off following the regime set in the hospital of 4 meals a day, but since then have worked to my blood sugar rather than regimented meal times.
a fellow type 1 at work told me I now I had to now ‘eat clean’ ie meat and fish and vegetables and not so much of the pizzas and cakes that are prolific here.
Have been blessed with a wonderful diabetic specialist nurse who has given advise on how I can exercise without going hypo.
had my driving licence revoked for 6 weeks and am terrified of losing it again, if I have a hospitalising hypo!
been offered an insulin pump, but because I seem to need so little insulin atm I don’t think for me it is worth the hassle. In my view more tech=more stress.
when I was first let back into the wild I was keeping my BS around 5, but then realised I felt rubbish, so I now prefer it more around 6-8, depending on how active I am. Managed to miss a ferry yesterday as I still forget to allow the extra time getting out the house to check and sometimes fix blood sugar before driving! I keep a pouch of baby yoghurt in the car door, if my BS decides it’s going to drop suddenly!
I think I seem to be at a slightly later stage to you, so not sure how helpful all this is for you. I am seeing a diabetic specialist doctor next week, for the first time since diagnosis, so hoping to have some questions answered.
one of my problems has been that the medics have assumed that being type 1 I was diagnosed years ago and assume I know what I’m doing! But they have been checking out other things to make sure I have no other auto immune diseases. Had all the scans, and some on my liver! But since I stopped taking alcohol it seems the high liver function tests have come back to a normal range.

Hi Markev
Yes you are some way on from me, and I do hope that you get some help soon and they realise the journey you are going through. I was lucky to be able to be diagnose at an early stage, however I am nearly at the stage of starting insulin now and upping my carbs. Strangly enough my journey started with a bloated stomach and feeling unconfortable most of the time. I also have an underactive thyroid and Vitiligo, which are both immune conditions. I suppose all is linked together.
I do hope that you get help going forward and give you the training you need to understand how to manage the condition easily. My role model is my brother who when diagnosed at the age of 57, in the same way that you were, sraight into hospital and absolutely petrified of needles. Now he enjoys his food and eats a lot of what he wants, enjoys a drink and can manage the lows with a kebab before he goes to bed (his nurses instructions to him). He can also eat sweet things and walk them off if he plans things correctly. It takes time to get to this point, and he was very nervous of everything in the first year. His journey really gives me confidence and hopefully will help you.

 

[ATB123]

Hi, after months of not knowing what wasw arong with me I am now diagnosed as type 1 late onset diabetic. at 59.
Thankfully I had a good doctor knew my brother was the same at 57, and she got the right tests done and referred me to a local clinic.
I have now been told that I am in stage 2 of 3 and currently not taking insulin until my baseline reaches 7on a regular basis.
My pancreas is still working a bit and I am regulating my diet with a total of 150 carbs spread out per day.
The doctor admitted that this was all new to him as he as he usually sees late onset when it is time for insulin and the patient is very unwell (being undiagnosed, or thought of as type 2).
Is there anyone else out there in the same stage or who has gone through this stage, as I would love to hear from you.
I keep being told that I am okay and won't be neading insulin for months, however I do get the highs and lows and feel horrid when this happens.
I don't know when my pancreas is going to choose to work and this makes it difficult to monitor what I eat and when.
Any advice would be great to receive.
Many thanks
Sandra

It took about 6 years from initially being diagnosed as T2 to rediagnosis as T1 for me. Initially I had 3 very good years, completely controlled with the lowest dose of gliclazide. Then it started to go wrong with increasing HbA1Cs and no response to the meds they chucked at me over the last 3 years. I caught Covid in August last year which seemed to kill off my beta cells for good, my sugars were in the 20s and stayed there, I felt absolutely awful. Got sorted in the September on just basal insulin for the first month or so, then got my rediagnosis and now on Novorapid as well for the last couple of months. Looking back I so wished I had pushed harder when things started to go wrong, I have lots of diabetes both types in my family, so should have been a bit more aware. You will know when things start to go wrong for you and my only advice would be to get help as soon as things go wrong, not leave it up to the drs like me, I hate to think of what damage I've done to my body over the last 3 years.

 

[Mrs HJG]

Hi @Sandra Peppa Sorry to be late to your post. I was diagnosed diabetic in a flurry of swapping T2/T1 at age 51, and after 3 weeks of minimal insulin and Metformin, I stopped the insulin and 2 years later I am still just on 1000mg Metformin, low carb and exercise. I spent months convinced I would become insulin dependent and really sick literally overnight, but after getting my Libre prescription at 6 months in, I have relaxed into it, and so far so good.

My HbA1c returned to non-diabetic once I changed my diet, and has decreased every 6 months since, probably as low as it will go now, and my antibodies have reduced too. My consultant agrees that it is likely that the covid vaccine triggered my initial major antibody reaction, and I am probably not alone.

I follow Jessie Inchauspé's hacks of salad, exercise and coating carbs and the combination works for me. No-one knows why but every diabetes nurse, nutritionist and consultant appt ends in 'keep doing what you're doing, it works'. Every now and again I eat something I know I probably shouldn't and see the spikes to be reminded all is not as well as it should be, so I stick to the regime and hope it will continue to work for as long as possible.

I hope you have been able to research and get the understanding you need since diagnosis; I read so much and made sure I knew as much as possible early on, knowledge is power and all that

 

[coby]

I would be very interested too. I went on a low carb (35 gms a day) I lost 35lbs since last May. I am now at the low end of normal weight wise. The pic of me was a month ago in Palm Springs, California. I exercise everyday in a big push to get my blood sugars down. I’ve been exercising like crazy since last May. My last Ac1 results (Just a week before Christmas) was very disappointing. I was shocked as I was expecting it to be in the low 5’s. From pre weight loss in March to just before Christmas my Ac1’s dropped from 6.7% to 6.3% . Not that high I know but sheesh something is a miss. A friend of mine was on insulin, he lost 40 lbs in weight and is now in remission! He wasn’t even exercising. What’s going on I ask myself. I stopped reading and participating on this site because I got very stressed with everybody’s success on low carb and weight loss. Don’t get me wrong I am very happy for each and everyone and much deserved. My brother is LADA and on insulin. His blood sugars started to go up fast after a short fever after being diagnosed with T2 for a few years back before he was diagnosed with LADA. I am pushing for answers so heading back to my Dr next week. It’s a big push because I am getting slight pins and needles in my fingers and toes. I’m on the verge of giving up on the low carb as it’s made no difference at all. I try and put a positive spin on it as I do feel great but worried at the same time.

@Melgar Have you tried fasting at all?

 

[Melgar]

@Melgar Have you tried fasting at all?

Hi Coby, thanks for the question. I am somewhat nervous about fasting as my diabetes is unstable. At the moment my blood sugar is elevated , my baseline is hovering around 7mmol/ls with drops around 3am to 4 mmol/ls it then rises back up. So I am not concerned about hypos at the moment. I have spells where my baseline drops below 5 mmol/ls I'm then in night time hypo territory with drops into the 2's. That happened last week. There is no pattern to it. No difference in food or habits. I don't drink alcohol (I stopped drinking alcohol as it aggravated the instability) I have gone all day, I know that's not a true fast, without food my BS remained the same with rises to 9 mmol/s for no reason. The stress of worrying if my blood sugars will drop without some food, i'm guessing, may elevate my blood sugars. The drs say it's "brittle" and they can not rule out auto-immune reasons. I already have one auto-immune disorder and they are currently testing for another non-diabetic related auto-immune issue. I have heard of a number of success stories around low carb diets slowing down and even stopping LADA. I have now come off my very low carb diet as it wasnt working but I continue to enjoy exercising.

 

[ianstead]

Hi Ian
Thank you for sharing this with me. How long were you on small doses of insulin? Its the journey throuhg the process which seems daunting at the moment. Glad to hear that you are using the omnipod pump now as this is quite new? How are you getting on with it?

Hi Sandra
I was on low doses of insulin for about 3 years. On a ratio of about 12:1 bolus for carbs in a meal. I think that was a ‘honeymoon period’ as I am now on a ratio of 7:1 . Perhaps my pancreas has packed up completely!
Ian

 

[Marikev]

Hi Marikev, I have questions lol. I feel something isn't right with my body. Were you diagnosed pre-diabetes , T2 first? And your 'tummy troubles', did you get stomach ache, GERD those kind of symptoms? I have numb fingers, Reynards I think, pins and needles in my fingers and toes, it has suddenly come on, like it could be secondary Reynards, but could be due to diabetes. I have moderate leukocytes in my urine. They fluctuate between trace and moderate. Plus I get these symmetrical skin rashes and low level fevers. The Dr says the skin thing is an immune/inflammatory response to gluten. I am 100% gluten free as I am highly sensitive to it. It's probably Coeliac, but I have refused the gluten challenge as I get too sick. Despite a general sense of feeling great in my head I can get seriously fatigued to a point where I cannot do anything but go lay down.my muscles and joints ache. I might be joining all the dots and creating a rabbit instead of a football. The rabbit may be sending me after the rabbit down a hole. Who knows, but I have a lot of autoimmune in my family so I am minded to think LADA and not T2 but until my sugars go wild I am in no mans land.

Hei Melgar, was never diagnosed with type 2 and the hospital just told me I had diabetes, not which sort, so I assumed it was type 2, at my age! But 2 weeks after leaving hospital a senior doctor phoned to tell me that the tests had shown I was type 1. One of the docs in the emergency room had told me I couldn’t eat or exercise my way out of taking the insulin. I had constant stomach ache, which disappeared as they were putting a huge dose of insulin into me… I hadn’t realised that the stomach pains were there, I had got so used to them. But my stomach troubles disappeared too. I had been diagnosed with IBS and told I could take tablets or just limit my diet by working out for myself which foods upset my digestive system. So pre type 1 diagnosis I was eating a very strange and limited diet. So I had kind of forgotten what I ate and what I liked to eat…
The doctor who diagnosed the IBS suggested I get my thyroid function checked, but then came Covid and it was a while before I saw a doctor to ask about my thyroid. But as a direct result of getting that checked and rechecked the sudden high BS was discovered.
I knew there was diabetes in my family and always assumed it was type 2, then recently found out my maternal grandfather in fact had type 1 diabetes. Which must have developed later in his life, since he was an 1880’s model!

 

[Marikev]

Hi Markev
Yes you are some way on from me, and I do hope that you get some help soon and they realise the journey you are going through. I was lucky to be able to be diagnose at an early stage, however I am nearly at the stage of starting insulin now and upping my carbs. Strangly enough my journey started with a bloated stomach and feeling unconfortable most of the time. I also have an underactive thyroid and Vitiligo, which are both immune conditions. I suppose all is linked together.
I do hope that you get help going forward and give you the training you need to understand how to manage the condition easily. My role model is my brother who when diagnosed at the age of 57, in the same way that you were, sraight into hospital and absolutely petrified of needles. Now he enjoys his food and eats a lot of what he wants, enjoys a drink and can manage the lows with a kebab before he goes to bed (his nurses instructions to him). He can also eat sweet things and walk them off if he plans things correctly. It takes time to get to this point, and he was very nervous of everything in the first year. His journey really gives me confidence and hopefully will help you.

Hei Sandra Peppa, only just found my way back to this thread. My diagnosis was a bit dramatic but came after months of blood tests and seeing different doctors to try and find out what was the matter with me. The medics started investigating me for other autoimmune conditions once they diagnosed the type 1, and noticed my exceptionally high liver function results.
Thinking about it I hadn’t felt really well for many years and the intermittent diarrhoea was a problem in itself.
thinking about your situation I wonder if it would be worth your while to self fund a glucose monitor and or a CGM? straight after diagnosis I was doing finger pricks for a couple of months before being supplied with CGM’s and it wasn’t until I got the CGM that I realised I was having a morning high BS. Was finger sticking on waking, pre breakfast and then 2 hours sleep later, so was missing it!
I marvel at how wonderful the pancreas is, when it is working OK.
If your situation can be managed without insulin, do it.

 

[Melgar]

Hi Marikev thanks for your reply. I’m so frustrated with it. Nothing really applies to me in the type 2 forums and the type 1 forums are usually about insulin, so that doesn’t apply either. They will not test for antibodies here in Canada unless all drug avenues have been tried and have failed. So I am in this liminal place of not knowing.

The bottom line is I am simply not producing enough insulin. I am currently on an off label drug that forces my pancreas to produce more insulin . It’s an ADHD medication. It’s not doing much for the ADHD, but it seems to be helping my blood sugars. It increases my ‘background insulin’ which is evident at nighttime, during the day it takes down the peaks. So today my blood sugars ran between 7.5 mmol/ls and 9 mmol/ls for the entire day without much deviation when I eat. It's dropped down now, but I'm about to eat ! Patience is not one of my virtues lol.

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[DCop]

I’m 62 and was first diagnosed as T2 in Jan 2019. I lost weight rapidly and one Diabetes Nurse (not my own) suggested I might not be T2. A GAD test returned 371 units and I was referred to Diabetes Centre who still even now define me as “probably LADA”. I’ve managed my diabetes with diet, medications, and exercise (I walk 5 miles a day) and was able to put off insulin for over 3 years. My lantus injections have slowly increased to twice a day (16 units overall now) and I recognise that I’m on a slow road to T1, but I try to go with the glucose numbers and react accordingly. It can be a bit difficult and anxiety-inducing at times, but I think I’m in charge of my glucose levels most of the time.