Concerned, confused and depressed

[Mark14400]

My very first retinopathy results arrived in the Post today..."some background retinopathy reported" What the hell ! I was diagnosed 4 months ago and my BG has been good since then...I don't get it. I thought retinopathy takes years to develop...I must have been a diabetic for ages. Does that mean I am Type 2 rather than Type 1....Worried....Thanks

 

[Mark14400]

Also...to add my Insulin dose is very low...27 units per day...18 long acting and 9 rapid...I am no expert but low dose doesn't say Type 1 to me. Should I ask for a re evaluation of my blood tests...Consultant seems convinced I am Type 1

 

[azure]

Also...to add my Insulin dose is very low...27 units per day...18 long acting and 9 rapid...I am no expert but low dose doesn't say Type 1 to me. Should I ask for a re evaluation of my blood tests...Consultant seems convinced I am Type 1

My basal dose is around 7 or 8 units per day @Mark14400 but I am still Type 1. We all need varying amounts

Sorry that you've had the upset of that letter. Background retinopathy can go away by itself, so don't panic. I don't know what could have caused it, but sometimes improving BS very quickly can cause it, plus simple bad luck.

Tagging @noblehead for you as he knows a lot more than me and can hopefully put your mind at rest.

 

[DavidGrahamJones]

Does that mean I am Type 2 rather than Type 1....Worried....Thanks

Consultant seems convinced I am Type 1

Although some type IIs require insulin, most do not, diet and or oral medication being adequate to control their BG levels. Type Is will always require insulin. Your consultant would have done several tests to establish whether you are type I or type II. I'm not saying mistakes aren't made, just that there's more chance of the consultant being right.
If you are type I then the symptoms are more obvious than being type II which people can have for some time before diagnosis.
Sorry to hear about the retinopathy which can be caused by diabetes but also hypertension. Retinopathy can also be present in premature babies, so a complicated condition to say the least.
There's a fairly straight forward guide here: https://www.drugs.com/health-guide/retinopathy.html and I expect others on the forum will have more practical experience of the condition. My own father's retinopathy was caused by his poor BG control and he received several lots of laser treatment. It was enough to allow him to keep driving into his 80s although I'm not sure if that's a measure of success, certainly enough for the DVLA and his optician specialist.

 

[noblehead]

Yes I can see why your baffled at your retinopathy diagnosis @Mark14400 , all I would say is try not to worry as we have members here who have reversed their background retinopathy or stopped it from progressing to the next stage. If you have a read of the following website it has a wealth of information and advice on diabetic retinopathy, pay particular attention to what it says about bg, bp and cholesterol control:

http://www.diabeticretinopathy.org.uk/Information_for_patients.html,

Regards to your total daily insulin dose, my TDD is around 32 units so I'm not much more than you, as @azure says our insulin needs can vary (depending on age, activity & diet for example).

 

[Soplewis12]

Hi Mark, I had a result a few years ago for retinopathy which concerned me but it was just after I'd started to carb count & my blood glucose had improved, hopefully this will be the same for you & will return to normal @ your next test.

 

[Mark14400]

My basal dose is around 7 or 8 units per day @Mark14400 but I am still Type 1. We all need varying amounts

Sorry that you've had the upset of that letter. Background retinopathy can go away by itself, so don't panic. I don't know what could have caused it, but sometimes improving BS very quickly can cause it, plus simple bad luck.

Tagging @noblehead for you as he knows a lot more than me and can hopefully put your mind at rest.

WOW ! That's impressive @azure ! Are you on any special diet to have such a low basal dose? I have a dietician appointment in 3 weeks and I really want to get on top of this. At the moment I still eat Bread, Potatoes etc but in heavily restricted amounts. Thinking of suggesting LCHF to my dietician see what She thinks

 

[Mark14400]

Thanks for the advice.....it's appreciated. At the moment it's just one more thing to add to my worry list

 

[Linda_N]

My very first retinopathy results arrived in the Post today..."some background retinopathy reported" What the hell ! I was diagnosed 4 months ago and my BG has been good since then...I don't get it. I thought retinopathy takes years to develop...I must have been a diabetic for ages. Does that mean I am Type 2 rather than Type 1....Worried....Thanks

Hi Mark,
Don't stress yourself or worry about it. I too had a letter like that and, as I always follow up with a visit to the opticians, I let him read the letter. He then took photos of the back of my eyes, without drops, and went through it with me. Apparently the letter is just a little warning, more like a note for their own future reference, that there is something going on but not enough for them to do anything about as it may rectify itself in time, depending on your control. Keep up the good work, you'll get there.
Linda

 

[Scott-C]

Don't jump to conclusions too early. I've been T1D for almost 3 decades, years of "no retinopathy signs" reports over all that time, then one a few years back saying "early signs but nothing to worry about", got me a bit worried, then all the ones since then said, "no signs". Some reading indicated that minor signs often fix themselves. Your report saying "background retinopathy" suggests it's just that: "background", as compared to "in your face serious problem ". Chances are with good control it may sort itself out. And if it doesn't they can fire a small laser at the dodgy bits to seal them up. Doesn't sound a lot of fun but seems to be quite succcessful in most cases.

 

[azure]

WOW ! That's impressive @azure ! Are you on any special diet to have such a low basal dose? I have a dietician appointment in 3 weeks and I really want to get on top of this. At the moment I still eat Bread, Potatoes etc but in heavily restricted amounts. Thinking of suggesting LCHF to my dietician see what She thinks

My diet is NOT a LCHF one. I eat moderate carbs and use insulin carefully. LCHF can cause physiological insulin resistance and after reading some people's experiences with increased insulin doses, I woukd never go too low with my carbs. That's my personal choice. I also make sure I don't go too high with the carbs. Everyone has an amount that suits them.

I eat potatoes, pasta, bread, etc, in moderate portions, bolus judiciously, and keep my control tight. if you're already restricting your carbs, then I would guess you're doing fine

It is not necessary to eat LCHF to get good control as a Type 1.

 

[Jaylee]

It is not necessary to eat LCHF to get good control as a Type 1.

I would agree with you. Having a good command of one's insulin pump helps imensely too!

 

[Mark14400]

I would agree with you. Having a good command of one's insulin pump helps imensely too!

I'm not pumping at the moment (resisting it) but my DSN really wants me to give it a go...I have seen images on Google of cannulas that have ripped out during the night...not a pretty sight....and for some reason, I don't know why but I don't as much sleep as have a war with my duvet during the night...it would only be a matter of time before my bedsheets would also be soaked in blood....but I love the idea

 

[azure]

I would agree with you. Having a good command of one's insulin pump helps imensely too!

My HbA1C is roughly the same now as when I was on MDI A pump is useful but it doesn't improve HbA1C necessarily. That's down to hard work - whether pumping or on MDI

(P.S - I think we've had this same discussion before )

 

[azure]

I'm not pumping at the moment (resisting it) but my DSN really wants me to give it a go...I have seen images on Google of cannulas that have ripped out during the night...not a pretty sight....and for some reason, I don't know why but I don't as much sleep as have a war with my duvet during the night...it would only be a matter of time before my bedsheets would also be soaked in blood....but I love the idea

I've ripped a cannula out once and it was fine - a surprise but not ugly or shocking. There was very little blood, if any

The cannula goes into your fatty skin layer not a blood vessel

 

[Mark14400]

My diet is NOT a LCHF one. I eat moderate carbs and use insulin carefully. LCHF can cause physiological insulin resistance and after reading some people's experiences with increased insulin doses, I woukd never go too low with my carbs. That's my personal choice. I also make sure I don't go too high with the carbs. Everyone has an amount that suits them.

I eat potatoes, pasta, bread, etc, in moderate portions, bolus judiciously, and keep my control tight. if you're already restricting your carbs, then I would guess you're doing fine

It is not necessary to eat LCHF to get good control as a Type 1.

Thanks @azure I've seen lots of chat about LCFH and it's benefits and I made the wrong assumption...sorry...but I do a lot of exercise (Walking) at least 1 Hr per day...usually 2 Hrs. It makes balancing carbs/insulin/exercise a tricky one to achieve. I want to have good control but not too close to hypo (the idea of night time hypos terrify me). As a result my waking BG is usually around 7 too high my DSN says. I'm not sure who best to discuss this with as it covers diet, exercise and insulin. It's a bit cross discipline. Not doing the walking is NOT an option for me as the benefit is far greater than physical.

 

[Mark14400]

Thanks @azure I've seen lots of chat about LCFH and it's benefits and I made the wrong assumption...sorry...but I do a lot of exercise (Walking) at least 1 Hr per day...usually 2 Hrs. It makes balancing carbs/insulin/exercise a tricky one to achieve. I want to have good control but not too close to hypo (the idea of night time hypos terrify me). As a result my waking BG is usually around 7 too high my DSN says. I'm not sure who best to discuss this with as it covers diet, exercise and insulin. It's a bit cross discipline. Not doing the walking is NOT an option for me as the benefit is far greater than physical.

I answered my own question.....time for a CGM !

 

[azure]

I walk a lot - largely through necessity, but also for pleasure. I tend to top up with snacks as needed, so that my BS stays in range. It's a balance, as you say.

If you always walk at the same time each day, you may be able to find a regime that works for you eg less bolus if just after a meal, etc.

A CGM might be useful, but remember it will be slightly behind your fingerprick tests. I don't have a CGM so can't compare. I test by fingerprick at regular intervals and that works well. A routine helps a lot - eg for certain walks you learn at which point a snack or test might be needed.

 

[Mark14400]

I walk a lot - largely through necessity, but also for pleasure. I tend to top up with snacks as needed, so that my BS stays in range. It's a balance, as you say.

If you always walk at the same time each day, you may be able to find a regime that works for you eg less bolus if just after a meal, etc.

A CGM might be useful, but remember it will be slightly behind your fingerprick tests. I don't have a CGM so can't compare. I test by fingerprick at regular intervals and that works well. A routine helps a lot - eg for certain walks you learn at which point a snack or test might be needed.

Yes...I walk at around 5.30am and 5.30pm pretty much every day as I did before I was diabetic...it may seem mad but the morning walk clears my head for the day ahead and the evening walk destresses (I can't emphasise that enough). I won't say what I do for a living but it comes with psychological overheads and stress and this helps ....no...is an essential coping mechanism. I long for the day a CGM will be as accurate as my trusty Glucomen LX it will solve my problem..I have no feeling in my fingers anymore just a general tenderness that doesn't go away...this thing sucks...

 

[noblehead]

but I do a lot of exercise (Walking) at least 1 Hr per day...usually 2 Hrs. It makes balancing carbs/insulin/exercise a tricky one to achieve. I want to have good control but not too close to hypo

Well you should consider the pump @Mark14400 which your DSN has offered.

I love walking too and walk at least an hour a day and up to 2 hours on a weekend, with a pump you can reduce your basal rate (Google Temporary Basal Rates) in preparation for exercising, it reduces the incidents of hypo's and I can say that from someone who has been on MDI and now uses an insulin pump.