I think complications are finally happening to me

[RobertJ]

Is this a conversation to be had with your team when you speak to them. I am sure they would let you go back on the regular insulin and leave the pod to experience?

Your control is much better than mine so it seems bad to give advice but do you circulate your pod sites. As in try to move them to different places each time. I have a habit of finding a couple of comfortable places that i like but i appreciate this is not good as leads to slower insulin absorption i believe.

I actually wonder if that's a problem. I probably need to try some more on my back to give the front of my tummy area time to recover.

 

[Grant_Vicat]

Thank you, @Grant_Vicat, that is inspirational. You say you were in a bad way at the age of nearly 21. How long had you had it by then?

20 years!

 

[holdem]

I actually wonder if that's a problem. I probably need to try some more on my back to give the front of my tummy area time to recover.

i too often put mine in the sort of jean pocket area of my legs. if i find im having super high readings i try to place it sort of just above the belt line on my buttocks. This gives me better control. But it is also frustrating as it can get caught on your belt etc.

I once read a book called something like "think like a pancreas" where it recommended you for example use your right leg for 4 successive pumps and make sure it goes in 2 inches apart each time... then your left leg for 4 etc etc to stop yourself reusing the same area too often.

 

[AndBreathe]

The NHS has never fully got out of Covid lockdown mode. They continue to discourage patients from attending hospitals and my GP surgery continues to have the attitude of "We're unable to operate as normal right now" but what they mean is they're permanently unable to do that.

I haven't seen a GP face to face since before lockdown. Our lot have a very complicated triage system, and I reckon you probably get a price, or a penance if you actually see a doctor.

We now have paramedics working on triage/primary appointments, which can be a bit hit and miss.

Our systems are limping along with, it seems, patients and professionals operating to different expectations.
To be honest, thinking about it more, I wouldn't be confident a GP or their support staff would be well placed to advise a T1 adequately, never mind someone bedding into pumping. I reckon pursuing your clinic or pump nurse is the best way forward.

Unfortunately, there has never been a more important time for us to self-advocate

 

[Nicola M]

As someone who has been on both ends of the scale from TIR of around 20% to now a TIR of around 75%-80% I sympathize and even though it is above the recommended 70% the NHS say to aim for it doesn't stop us from wanting to do better all the time especially when you have all of the data in front of you and you can see what your blood sugars are doing constantly throughout the day. I myself can sometimes be a little hard on myself more so these days if I go out of range.

I'm by no means an expert in pumping, pre-hybrid loop I was probably the worst diabetic with a pump but I do know from that experience how hard it is to get things completely right, if even one thing is off it sends your sugars haywire. I would echo what has been said above about changing your sites location regularly, I use my abdomen and I swap from the left side to the right side roughly every 1.5 months, it gives each side enough time to "heal" before it's used again. If you're not already do make sure as well you are changing your sites when you're meant to be (I am guilty of not always doing this) but leaving sites in for longer than you should can affect absorption.

Have you also considered asking about alternative insulins such as the faster-acting ones (Fiasp/Lyumjev) they aren't for everyone but I do find they have helped me massively with stopping blood sugar spikes from happening as often and/or bringing me down into range better.

You're still in the very early stages of pumping, previous to this you probably had some years of experience with MDI and had really fine-tuned it to a point where you were satisfied and could always get the results you wanted whereas you have only been pumping for 3 months and in the grand scheme of things that isn't very long. I would say to get into contact with your DSN to try and get some additional support from them if you can do.

 

[Prancy]

I actually wonder if that's a problem. I probably need to try some more on my back to give the front of my tummy area time to recover.

Robert, I can empathize with you. I’m going through something very similar right now. I’m Type 1 for 23 years. My control has varied, but I have tried really hard for the last 10 years for sure. I’ve been in A1C 6-7 range for most of that time, with some exceptions.

I just saw my primary (got full labs and kidney results were great.) and he referred me to a neurologist to get a clearer idea of what’s going on with my foot tingling and slight numbness. (I can still feel fine. Feels funny though.) Will be seeing Endo again soon. Last visit 3 months ago and she was pleased. I’m very scared, but….I’m trying to stay calm and wait for the findings. I’m having night hand tingling too. I’m sleeping in wrist braces. It helps a lot.

Are your symptoms intermittent or steady? There are potentially causes that are not diabetes related. Have you had your Vitamin B-12 checked? One symptom of low vitamin B-12 is tingling in the limbs. Your primary should be able to rule out some things with lab work.

If it is diabetes related, I think there are treatments. And, I’ll keep working on better control. I’ve ordered an upgraded pump, Medtronic 780G. Hopefully, it‘ll get processed and arrive soon. My diet is tight. I exercise 5-6 days a week. I try so hard.

I had floaters and flashing lights in my right eye a few months ago that terrified me. I immediately saw a retina ophthalmologist the next day. A comprehensive exam revealed no diabetic related problem. I returned for a review 6 weeks later and all was well. My floaters have eventually gone or, I no longer see them. I‘ll continue to see her in the future, at least twice a year. I have had comprehensive eye exams for many years with a cornea specialist, as I have a cornea issue that is not diabetes related. Do you have access to them? It can give you peace of mind.

I often feel better when I watch videos by TCOYD. They are 2 long time diabetic endos who provide amazing info and support to those who have diabetes. Check out their website. They cover all kinds if topics, including complications. They make you feel so much better. Their warmth and humor are contagious.

I hope you start feeling better. I’m hoping and praying all of us can get through this. There are some things under my control and some things that aren’t. I’ll look forward to seeing your updates. Hang in there.

 

[RobertJ]

Robert, I can empathize with you. I’m going through something very similar right now. I’m Type 1 for 23 years. My control has varied, but I have tried really hard for the last 10 years for sure. I’ve been in A1C 6-7 range for most of that time, with some exceptions.

I just saw my primary (got full labs and kidney results were great.) and he referred me to a neurologist to get a clearer idea of what’s going on with my foot tingling and slight numbness. (I can still feel fine. Feels funny though.) Will be seeing Endo again soon. Last visit 3 months ago and she was pleased. I’m very scared, but….I’m trying to stay calm and wait for the findings. I’m having night hand tingling too. I’m sleeping in wrist braces. It helps a lot.

Are your symptoms intermittent or steady? There are potentially causes that are not diabetes related. Have you had your Vitamin B-12 checked? One symptom of low vitamin B-12 is tingling in the limbs. Your primary should be able to rule out some things with lab work.

If it is diabetes related, I think there are treatments. And, I’ll keep working on better control. I’ve ordered an upgraded pump, Medtronic 780G. Hopefully, it‘ll get processed and arrive soon. My diet is tight. I exercise 5-6 days a week. I try so hard.

I had floaters and flashing lights in my right eye a few months ago that terrified me. I immediately saw a retina ophthalmologist the next day. A comprehensive exam revealed no diabetic related problem. I returned for a review 6 weeks later and all was well. My floaters have eventually gone or, I no longer see them. I‘ll continue to see her in the future, at least twice a year. I have had comprehensive eye exams for many years with a cornea specialist, as I have a cornea issue that is not diabetes related. Do you have access to them? It can give you peace of mind.

I often feel better when I watch videos by TCOYD. They are 2 long time diabetic endos who provide amazing info and support to those who have diabetes. Check out their website. They cover all kinds if topics, including complications. They make you feel so much better. Their warmth and humor are contagious.

I hope you start feeling better. I’m hoping and praying all of us can get through this. There are some things under my control and some things that aren’t. I’ll look forward to seeing your updates. Hang in there.

Thank you for this post and I am sorry for what you're going through with your limbs tingling. It is scary and it's depressing when you think you're doing "everything right" and it still happens. You say you've had good control for the last ten years, so that means you've had 13 years of bad control whereas I'd say mine has been pretty bad until last year.

To answer the question, my symptoms come and go. I notice it more when I'm wearing shoes, so I don't know what that signifies. I am in shoes right now and can feel it on the outside of my left foot.

I have watched a view videos from TCOYD and I agree with your outlook: it contains practical advice and they have a light-hearted, reassuring tone.

 

[Prancy]

Thank you for this post and I am sorry for what you're going through with your limbs tingling. It is scary and it's depressing when you think you're doing "everything right" and it still happens. You say you've had good control for the last ten years, so that means you've had 13 years of bad control whereas I'd say mine has been pretty bad until last year.

To answer the question, my symptoms come and go. I notice it more when I'm wearing shoes, so I don't know what that signifies. I am in shoes right now and can feel it on the outside of my left foot.

I have watched a view videos from TCOYD and I agree with your outlook: it contains practical advice and they have a light-hearted, reassuring tone.

Glad you were able to catch some of the TCOYD videos. They have conferences and presentations too. (I’m planning to attend the one in San Diego next year.) Through them, I’ve learned of how they as young men had years where they weren’t managing things very well. Tight control over many years isn’t common.

Since March, I’ve lost 43 pounds, started an exercise program…6 days per week and totally changed my diet to include only nutritious foods. I now meditate and have adopted a new lifestyle. It’s ironic this tingling starts up now. Go figure.

Thinking back over my early days has cause me to wonder….I’m going to try to locate some old medical records just to see how my a1c was long ago. I don’t recall anything very high. This was before cgms were common. But, regardless, all I can do now is focus and devote my all to tight control moving forward. I won’t beat myself up. I do my best at a very challenging job that constantly changes and shows no mercy. I will be gentle with myself. For me, that promotes peace, which I need for endurance. I don’t know what lies in store for me, but I often think of my great aunt who lived with type 1 for many years. She lived into her 80s with no serious complications. Much of that time was before people had blood meters, so she could only guess what her BG was. She’s my inspiration.

 

[Prancy]

It’s crazy, but today was a great day! No tingling in my left foot and barely any in right foot! Almost feels normal! is this possible? I’m so grateful. Day by day I guess.

Have you had any intermittent symptoms?

 

[RobertJ]

It’s crazy, but today was a great day! No tingling in my left foot and barely any in right foot! Almost feels normal! is this possible? I’m so grateful. Day by day I guess.

Have you had any intermittent symptoms?

Since I made this thread, it's been coming and going for me too. I notice the burning/tingling much more when I'm in shoes than without. I'm not sure what to make of that. I'm glad it's on the wane for you too (at the moment).

Have you noticed differences depending on activity or whether you're wearing shoes?

 

[AndBreathe]

Glad you were able to catch some of the TCOYD videos. They have conferences and presentations too. (I’m planning to attend the one in San Diego next year.) Through them, I’ve learned of how they as young men had years where they weren’t managing things very well. Tight control over many years isn’t common.

Since March, I’ve lost 43 pounds, started an exercise program…6 days per week and totally changed my diet to include only nutritious foods. I now meditate and have adopted a new lifestyle. It’s ironic this tingling starts up now. Go figure.

Thinking back over my early days has cause me to wonder….I’m going to try to locate some old medical records just to see how my a1c was long ago. I don’t recall anything very high. This was before cgms were common. But, regardless, all I can do now is focus and devote my all to tight control moving forward. I won’t beat myself up. I do my best at a very challenging job that constantly changes and shows no mercy. I will be gentle with myself. For me, that promotes peace, which I need for endurance. I don’t know what lies in store for me, but I often think of my great aunt who lived with type 1 for many years. She lived into her 80s with no serious complications. Much of that time was before people had blood meters, so she could only guess what her BG was. She’s my inspiration.

Hi there - I am absolutely not trying to diagnose you or anyone else, but it is a fairly well known phenomenon for these tingles, and aching feet usually to occur when control tightens. With continuing good control, it often disappears.

Similar things can happen with eyes, but those changes are usually transient too, although it can make sense for changed to lifestyle to be done on a steady, rather than extreme, basis.

Hopefully things will settle for you.

 

[Prancy]

Since I made this thread, it's been coming and going for me too. I notice the burning/tingling much more when I'm in shoes than without. I'm not sure what to make of that. I'm glad it's on the wane for you too (at the moment).

Have you noticed differences depending on activity or whether you're wearing shoes?

Yes, it’s much less when I’m in loose sandals, rather than my laced up running shoes. I walk on a treadmill 5-6 days per week and I feel it most during my pre-walk time, getting dressed, warming up, stretching, etc. When I’m actually walking, it’s pretty good. I talked to my physical therapist about it today. I see her for my torn meniscus and ITBS issue. She seems to think it’ll improve…..so, Idk. All I can do is keep working super hard to keep BG down. My nighttime numbers are awesome. Usually around 100. If i could only get it that way all the time. I need the Medtronic 780! I’m working on it daily.

My skin is also getting much healthier. I have periodic episodes of psoriasis . My vision seems the same.

 

[Djinn 2]

I have had type one Diabetes since the spring of 1981, at ten years old, and have had to live through all the carb focused diets that in my opinion have ruined, or at least made diabetes control a nightmare. I have used a insulin pump and CGM the last 12 years, and this helped a lot with getting the HbAic in check well below 53 (7%). My current pump is Medtronic Minimed 780G and it's Sensor 4 CGM, my insulin is Humalog

Since February this year I went on a low carb life style, and intermittent fasting and usually omad, but never more than two meals. The less often I eat the easier it is to have my blood glucose a straight line. In all I have lost 17kg of weight, and I am off blood pressure medicine, I work out 2 times a week which includes 3-5 hour hiking trips up in the Norwegian hills and mountains. My last HbAic was 35 (5.35%) and my daily insulin intake is 2 4 IU split in half between basal and bolus.

I am fat adapted and I do get a ketone reading every morning. Sometimes I do fast a day or two, to avoid getting my body adjusted to a steady predictable ritual. Changing the pumps reservoir every three days max four keeps it easier to predict needed insulin, since the longer it has been in the pump the more insulin you need. I use Temporary Basal together with bolus dose when I eat, and I also use the temporary basal adjustment when my reservoir is new or getting older.

If I get a low glucose level, I turn off the pump by myself or automatic at night, and do not correct with any carb unless I really have to (almost never). Another perfect thing with the Temporary Basal adjustment is that you can set it for a time restricted lower insulin supply when you feel the need.

I do feel my low blood glucose incidents, but they are never a problem because of my fat and ketone adaption.

I would never give up anything regarding getting your Diabetes in check, but the longer you wait the less time you have.

Edited out a few spelling faults and added the mmols/mol values.

 

[Prancy]

I have had type one Diabetes since the spring of 1981, at ten years old, and have had to live through all the carb focused diets that in my opinion have ruined, or at least made diabetes control a nightmare. I have used a insulin pump and CGM the last 12 years, and this helped a lot with getting the HbAic in check well below 7. My current pump is Medtronic Minimed 780G and it's Sensor 4 CGM, my insulin is Humalog

Since February this year I went on a low carb life style, and intermittent fasting and usually omad, but never more than two meals. The less often I eat the easier it is to have my blood glucose a straight line. In all I have lost 17kg of weight, and I am of blood pressure medicine, I work out 2 times a week which includes 3-5 hour hiking trips up in the Norwegian hills and mountains. My last HbAic was 5.3 and my daily insulin intake is 2 4 split in half between basal and bolus.

I am fat adapted and I do get a ketone reading every morning. Sometimes I do fast a day or two, to avoid getting my body adjusted to a steady predictable ritual. Changing the pumps reservoir every three days max four keeps it easier to predict needed insulin, since the longer it has been in the pump the more insulin you need. I use Temporary Basal together with bolus dose when I eat, and I also use the temporary basal adjustment when my reservoir is new or getting older.

If I get a low glucose level, I turn off the pump by myself or automatic at night, and do not correct with any carb unless I really have to (almost never). Another perfect thing with the Temporary Basel adjustment is that you can set it for a time restricted lower insulin supply when you feel the need.

I do feel my low blood glucose incidents, but they are never a problem because of my fat and ketone adaption.

I would never give up anything regarding getting your Diabetes in check, but the longer you wait the less time you have.

Great news about your 780G. Doesn’t the auto mode prevent lows?

 

[Djinn 2]

Great news about your 780G. Doesn’t the auto mode prevent lows?

Well it does prevent me from getting under 3.5 as standard, but I lowered it down to 3, and I do not use the Smartguard function of the Minimed 780G.

 

[Prancy]

Well it does prevent me from getting under 3.5 as standard, but I lowered it down to 3, and I do not use the Smartguard function of the Minimed 780G.

So you use your own basal rates and do not utilize the, Smart guard micro boluses.

 

[Djinn 2]

Yes, I use my own settings and since I utilize the temporary basal together with my bolus I am not stuck to a: "I have to eat at 5pm".