New on here, scared! Type one since 1976. Peripheral retinopathy for 15 years. Hi

[Kearnspaula]

Until recently I’ve neglected diabetes care, as stressful work and main carer to my Mum and Dad, both now deceased. Got Dexcom G6 3 years ago, fantastic. Saw a neurologist yesterday, said mri fine. Saw him re mri, symptoms, feel giddy, irregular blood pressure, tire easily. He mentioned autonomic neuropathy, which I’ve recently become aware of. Does anyone know if all I can do is keep good control of bloods? Hoping Gp will refer me to diabetic service at hospital for guidance, but I’m not overly hopeful. Oh and Hi, I’m so glad I took the time to find this site. Xx

 

[rebrascora]

Hi and welcome

As a Type 1 diabetic I find it surprising that you are under your GP rather than the hospital clinic for your diabetes care and you certainly should be able to be referred to the clinic at any time.
Are you self funding the Dexcom? Just thinking that it is unusual to get it on the NHS but you could quite possibly get Freestyle Libre on prescription. I know the Libre might seem like a poor cousin to the Dexcom but if you are struggling to self fund long term, it would be something to consider
I wonder if some increased gentle exercise would help with the Autonomic Neuropathy. Obviously good BG control is key to reducing the impact of any diabetes complications and we all know how much CGM/FGM helps with that, so the Dexcom was probably the single biggest step you could take to improve that. You can learn lots of tips and tricks here on the forum to use the Dexcom data to fine tune your levels though, so if you have any particular issues that it highlights with your levels like spikes after food etc just ask.
It would be interesting to know which insulin's you are currently using and how you find them?

Anyway, I hope you enjoy being part of the community and gain as much benefit from being here as I have and i hope to benefit from some of your obviously vast experience. Good to wee you have already found the Group 7-day waking average thread... which is almost a virtual coffee morning thread. Look forward to reading your regular contributions there and learning a bit more about you.

 

[Inka]

Welcome @Kearnspaula 🙂 I really hope you do get that hospital referral. They know so much more about Type 1. I’m sorry that I can’t answer your question about autonomic neuropathy but I would imagine keeping tight control would help stop it progressing.

 

[Kearnspaula]

Ah, thank you both for replying. The hospital diabetes team discharged me many years ago, as felt I was doing ok and could be managed by Gp, and until recent bout of feeling yuck I’ve been ok with that.
I’m on novorapid and Lantus, using my tummy to hope for faster reaction time, it does feel as though the novo takes longer to start working than 15 mins, but I do put that down to how I’m feeling, anxiety, anger and upset do affect my blood sugars.
I am self funding the Dexcom, Gp advised they have been advised not to fund CGM, so we purchased to avoid high low bloods following an op I had.
Yep, it’s been a struggle but I do exercise five days a week, only 15 to 30 mins re blood pressure on excercise, low side otherwise.
I do try and follow a lower carb diet, am vege which helps, but hubby does cooking and loves his carbs! I need to find out about GI as think this could help to predict bloods in time.
All my bits are crossed about ref to diabetes team.
Thank you so much x

 

[rebrascora]

You mean Novo(not so)Rapid! I had to prebolus over an hour on a morning with it and 20-25 mins at other times of day. I now use Fiasp but even with that which is supposed to be really quick, I still need to give it 45 mins on a morning and 15-20 mins at other times of day and that is in my stomach. Of course we are all different and I would absolutely not recommend you try an hour yourself tomorrow morning but certainly worth experimenting with extending it by 5 mins each day until you find the perfect timing for you. I would be spiking up to 15 and then crashing if I was just giving it 15 mins in fact I was until I started playing with bringing it forward. Now I inject by basal and bolus before i get out of bed and then potter around making my breakfast and a coffee and then keep scanning until I see my levels start to drop and when I get to low 6s or mid-high 5s with a downward sloping arrow I est.
Presumably your Dexcom will be showing you if you are spiking and how badly?

GI is an average of how quickly 100 people's BG levels responded to certain carbs/foods and therefore I don't think it is actually all that helpful unless you know that you are Mr or Mrs Average and there is no way of telling other than your Dexcom/Libre/BG meter. It very much depends upon your metabolism and gut biome and indeed what else you eat with that food, in the same way as having cream with a banana may slow it down or the fat in pizza delays it's glucose release. Porridge is quite low GI but it hits my blood stream in 20mins and that is a good jumbo oats porridge not a highly processed Ready-Brek. I can see it happen on my Freestyle Libre. That is not that much slower than Dextrose or jelly babies that I use for hypos.
Not saying don't try Low GI but you have the Dexcom to show you which foods will work better for you via trial and error than the Glycaemic Index which is just general guidance that may be applicable to you or may not.

Just my thoughts anyway! 🙂

 

[Kearnspaula]

You mean Novo(not so)Rapid! I had to prebolus over an hour on a morning with it and 20-25 mins at other times of day. I now use Fiasp but even with that which is supposed to be really quick, I still need to give it 45 mins on a morning and 15-20 mins at other times of day and that is in my stomach. Of course we are all different and I would absolutely not recommend you try an hour yourself tomorrow morning but certainly worth experimenting with extending it by 5 mins each day until you find the perfect timing for you. I would be spiking up to 15 and then crashing if I was just giving it 15 mins in fact I was until I started playing with bringing it forward. Now I inject by basal and bolus before i get out of bed and then potter around making my breakfast and a coffee and then keep scanning until I see my levels start to drop and when I get to low 6s or mid-high 5s with a downward sloping arrow I est.
Presumably your Dexcom will be showing you if you are spiking and how badly?

GI is an average of how quickly 100 people's BG levels responded to certain carbs/foods and therefore I don't think it is actually all that helpful unless you know that you are Mr or Mrs Average and there is no way of telling other than your Dexcom/Libre/BG meter. It very much depends upon your metabolism and gut biome and indeed what else you eat with that food, in the same way as having cream with a banana may slow it down or the fat in pizza delays it's glucose release. Porridge is quite low GI but it hits my blood stream in 20mins and that is a good jumbo oats porridge not a highly processed Ready-Brek. I can see it happen on my Freestyle Libre. That is not that much slower than Dextrose or jelly babies that I use for hypos.
Not saying don't try Low GI but you have the Dexcom to show you which foods will work better for you via trial and error than the Glycaemic Index which is just general guidance that may be applicable to you or may not.

Just my thoughts anyway! 🙂

 

[Kearnspaula]

Thank you on many points: there was me thinking it was just me sometimes waiting over an hour for my breakfast! I’ve put it down to my silly emotional state. The Dexcom is great, certainly an excellent tool for spying on your system. I swim at 11am, only one morning, so eat my porridge at 10 so bloods are at highest at 11, then the insulin and swimming lower it to normal when I get out! Only done this 4 times, not done with slowrapid yet though!
When I was diagnosed Mum bought carbohydrate countdown book and I ate at regular times, the GI bit I think came into action when I was just living my life, thank you for your helpful comments, it is inline with what I’m finding. Thank you, thank you x