Worried about complications

[DannyDs]

Hi all I’m Dan. I’m currently 33 and have been leaving with diabetes since I was 5. Type 1. As I’m sure many of you in the same position the first few decades in early years I paid no mind to it all. Wouldn’t follow a strict routine with being you. I still have all the symptoms of being low and high and relatively ok good health. I eat good and excerise. July 23 I had small bleeding in my right eye and had laser treatment for it which stopped the bleeding. My Hba1c last year was 55mmol. I’ve now had the results for my eyes again and looks like the right eye again needs laser. Next month I’m having an operation on my elbow for for neurology but they cannot confirm if this is diabetes related but due to being diabetic there’s a greater chance. I’ve worked really hard since July to lower my Hba1c and I’m currently at 48mmol. My question really is with good hba1c levels can you complexity prevent the horrible complications diabetes can bring blindness/amputation etc or is this something that it inevitable no matter how good you control. Is 48mmol higher for a 30 year diabetic or is that classed as acceptable and can complications be avoided with this?

Many thanks for reading

 

[Lucyr]

My question really is with good hba1c levels can you complexity prevent the horrible complications diabetes can bring blindness/amputation etc or is this something that it inevitable no matter how good you control.

You can’t guarantee preventing them but they aren’t inevitable either. It’s a combination of good control, good luck, and seeking help promptly if any issues that is involved in preventing them.

 

[rebrascora]

It is also possible for the blood vessels in your eyes and your nerves to repair themselves to a limited extend if you can keep your BG levels more stable. There are several of us who have had background retinopathy a few years ago and then got the all clear a year or two later and other people have had neuropathy which has improved with better diabetes management, so it isn't always a one way street and the better you manage your diabetes the less the risk and it is never too late to make improvements, so really good to hear that you are now getting to grips with it and getting good results. I personally don't worry about complications. I am fitter and healthier now than I was pre-diagnosis and almost certainly healthier than most of my peers because my diabetes focuses me on eating well and keeping fit. I hope you can maintain your current good management without too much concern about the future. That HbA1c result of 48 should significantly reduce the risk of more complications developing and give your body a reasonable chance of some recovery.

 

[Satan’s little helper]

Hi all I’m Dan. I’m currently 33 and have been leaving with diabetes since I was 5. Type 1. As I’m sure many of you in the same position the first few decades in early years I paid no mind to it all. Wouldn’t follow a strict routine with being you. I still have all the symptoms of being low and high and relatively ok good health. I eat good and excerise. July 23 I had small bleeding in my right eye and had laser treatment for it which stopped the bleeding. My Hba1c last year was 55mmol. I’ve now had the results for my eyes again and looks like the right eye again needs laser. Next month I’m having an operation on my elbow for for neurology but they cannot confirm if this is diabetes related but due to being diabetic there’s a greater chance. I’ve worked really hard since July to lower my Hba1c and I’m currently at 48mmol. My question really is with good hba1c levels can you complexity prevent the horrible complications diabetes can bring blindness/amputation etc or is this something that it inevitable no matter how good you control. Is 48mmol higher for a 30 year diabetic or is that classed as acceptable and can complications be avoided with this?

Many thanks for reading

Hello & welcome, what can I say. I don’t know you. I was once as you are now, paying no mind then finding a reason.to sort myself out. Been T1 for nearly 5 decades. I feel you’re doing great.
I’ve had some historical “wake up calls.” To date for me, a distant memory.
Here’s wishing you the same.

 

[helli]

As @Lucyr suggests, nothing is inevitable.
But you can reduce risk.
You cannot change history.

Well done on reducing your HBA1C. This is definitely the way to go.

 

[Bruce Stephens]

Is 48mmol higher for a 30 year diabetic or is that classed as acceptable and can complications be avoided with this?

As I understand it 48 is pretty good (unusually good: while it's the general target, few of us achieve it (I don't)), and while lowering it further would be better it wouldn't be that much better. (The risk increase/decrease with HbA1c is far from linear. A small decrease when your HbA1c is 80 is worth much more than the same decrease if you're already at 50.)

My question really is with good hba1c levels can you complexity prevent the horrible complications diabetes can bring blindness/amputation etc or is this something that it inevitable no matter how good you control.

Most (if not all) of the complications are things that can (more rarely) happen to people who don't have diabetes at all.

It's been known for decades that better control reduces the risks, but I'm not sure we know whether keeping BG in normal range (or close to it) would reduce the increased risk of complications to nothing. With any luck the introduction of HCL to newly diagnosed children might (in decades, anyway) allow an answer by offering them much better control in a usable way.

I think the suspicion is that it's all about BG and that controlling that optimally will reduce the risks to nothing but I don't know how confident that hypothesis is (maybe there are some other things that diabetes messes up that cause some damage).

I'm guessing once you've had BG above normal for years, controlling it well now won't fix everything. (Unfortunately.) It can help with background retinopathy so maybe other blood vessels can regain their function too. Quite likely it depends how severe the earlier damage was, how long the good control is, etc. To an extent it probably doesn't matter that much: better control is better than worse control (even if things don't get better they could definitely get worse) so we should aim for good control.

 

[Kol]

Hi @DannyDs,

We can but do our best, the rest is well, just fate.

I don’t dwell on past mistakes or decisions ‘cos I can’t change them now, I don’t think about what may or may not happen, one day at a time of the best control I can manage will have to be enough, drive yourself mad with worry otherwise.

 

[Kol]

In past years I had yearly eye check at the optician, then one time I was referred to the hospital eye clinic for 3 month checks, my stress was immense, happened to get Libre shortly after, had 6 month visit then 9 month visit now back to yearly, so other than doing my best at TIR not much more I can do.

 

[everydayupsanddowns]

I think it’s pretty natural to have a degree of worry about long-term complications @DannyDs, but try not to let it consume you

You’ve done amazingly well to the reduction in your HbA1c, and that should really help reduce the risks of microvascular and nerve damage occurring or progressing.

My understanding is that both the damage, and the improvements take effect and build up over time, and that stability of results is an important factor as well as the numerical HbA1c itself. So aiming to maintain your amazing HbA1c while also seeking to reduce glucose variation and instability (even if your A1c goes up a couple of points) seems to be the best strategy.

 

[JITR]

A suggestion from T2D in remission, two in fact.

Join Zoe Harcombe's online diet club, cost about £15 for 3 months. Her brother is a T1D and she will certainly be able to give you specific dietary advice and probably more besides by email and or consultation.

Marty Kendall's wife is a T1D and that's why he set up Optimising Nutrition as I recall. He has an amazing website, is highlly regarded and has a membership programme. He is an engineer who has developed some better ways to treat T1.

 

[Inka]

Diet isn’t really the key to Type 1 @JITR insulin is. A Type 1 could eat the most perfect diet in the whole world but if their insulin is wrong, it wouldn’t be any good. Type 1 is a very different condition to Type 2, where diet is more important.

@DannyDs Worry is natural. I try not to dwell on it, in the same way I try not to dwell on the myriad other medical conditions not connected to diabetes. All we can do is do our best. Your HbA1C is excellent.

 

[JITR]

Diet isn’t really the key to Type 1 @JITR .

I know. Thank you.

 

[SB2015]

Well done for getting things back in track @DannyDs and your HbA1c is well on target now and at a level that many of us won’t achieve. It is understandable to concern yourself about complications especially having had some issues with your eye, and it is a question of balance. Just do the best that you can.

I think focusing on time in range can also help. This will not be perfect but over 70% in range is good and the tech available now can help us to achieve that. Do you wear a sensor? I found that helped me to reduce the post meal spikes that I was having. I did this by adjusting the timing of my injection and looking at the types of carbs I eat.

Keep in touch on here, keep doing what you are doing.

 

[JITR]

My question really is with good hba1c levels can you complexity prevent the horrible complications diabetes can bring blindness/amputation etc or is this something that it inevitable no matter how good you control. Is 48mmol higher for a 30 year diabetic or is that classed as acceptable and can complications be avoided with this?

Marty Kendall's wife is a T1D and that's why he set up Optimising Nutrition as I recall.

@DannyDs,

In case you haven't seen it, Marty has some tips here which may help a bit:

Mastering Type-1 Diabetes Management: A Comprehensive Guide to Thriving with T1D​

Mastering Type-1 Diabetes Management: A Comprehensive Guide to Thriving with T1D

Explore the in-depth guide to thriving with Type-1 Diabetes, featuring personal insights and practical tips for optimal health management.

optimisingnutrition.com

 

[Inka]

You’re recommending a loop @JITR ? I notice no-one has asked Danny if he’s pumping or injecting yet. If he’s pumping then he might be offered a loop at some point with the new guidelines coming in. Obviously OpenAPS is out there too.

 

[helli]

@DannyDs,

In case you haven't seen it, Marty has some tips here which may help a bit:

Mastering Type-1 Diabetes Management: A Comprehensive Guide to Thriving with T1D​

Mastering Type-1 Diabetes Management: A Comprehensive Guide to Thriving with T1D

Explore the in-depth guide to thriving with Type-1 Diabetes, featuring personal insights and practical tips for optimal health management.

optimisingnutrition.com

Just read the bit about low carb. Looks like this guy is a bit of a low carb evangelist.
Yes, it's an option but a "normal diet" is not a diet full of doughnuts. I consider myself to eat a "normal diet" although I cook a lot from scratch (and, for ethical reasons, do not eat meat).
I manage this well (TIR around 80% and HBA1c around 40) with my (non-HCL) pump.
Low carb is an option but not the only one and his idea of "normal eating" is strongly biased towards (against?) carbs being ultra processed rather than normal fruit and veg that our (slim) parents and grandparents ate.

But we are getting distracted from the original question.
Let's get back to discussing risks of complications rather than pushing low carb diets.

 

[Inka]

Agreed @helli Very low carb just comes with its own load of issues. To balance things, let’s bear in mind the Type 1s following a high carb very low fat diet that have incredible insulin sensitivity.

 

[JITR]

You’re recommending a loop @JITR ?

I am not recommending anything, just making a couple of suggestions in case they help Danny to avoid complications.

1. At the end of the comments on his post, Marty Kendall says:

I’ve had a number of people ask for something more specific around T1D so I thought it would be good to do a thorough brain dump of all the protips we’ve picked up. I hope our journey and learnings can help others. we’re so grateful to all the people who have taught us so much!

2. In a post about diabetes Zoe Harcombe draws attention to poor advice given to diabetics and summarises the basics in ten points, covering both T1 and T2: open https://www.zoeharcombe.com/2023/04/pre-diabetes-diet-advice/ and scroll down to:

The basics of diabetes
Since my brother’s diagnosis with type 1 diabetes when he was a teenager, I’ve been fascinated by diet and the power of sugar and insulin. For this note, I have summarised my findings about diabetes from family experience, research and conference presentations: ...

 

[Satan’s little helper]

An A1c of 48 would get a nod of approval from the ophthalmologist @DannyDs . Your achievement on how with this great result you did it, is your business.
Though the threat of complications is not unreal. I feel some are more consigned to an age where less tech, less accurate screening & facilities were available.
It’s easy to say, “not to worry.” Maybe, a perspective that they picked “something” up & now you are working together with your team to sort this out?

Best wishes.

 

[RichardsUsername]

Hi all I’m Dan. I’m currently 33 and have been leaving with diabetes since I was 5. Type 1. As I’m sure many of you in the same position the first few decades in early years I paid no mind to it all. Wouldn’t follow a strict routine with being you. I still have all the symptoms of being low and high and relatively ok good health. I eat good and excerise. July 23 I had small bleeding in my right eye and had laser treatment for it which stopped the bleeding. My Hba1c last year was 55mmol. I’ve now had the results for my eyes again and looks like the right eye again needs laser. Next month I’m having an operation on my elbow for for neurology but they cannot confirm if this is diabetes related but due to being diabetic there’s a greater chance. I’ve worked really hard since July to lower my Hba1c and I’m currently at 48mmol. My question really is with good hba1c levels can you complexity prevent the horrible complications diabetes can bring blindness/amputation etc or is this something that it inevitable no matter how good you control. Is 48mmol higher for a 30 year diabetic or is that classed as acceptable and can complications be avoided with this?

Many thanks for reading

Hello @DannyDs Being worried can be a good thing if it helps you make positive changes. It's when it gets out of control and becomes severe anxiety. That then takes over your life. Just a brief look from a certain perspective on being worried.