Eye Screening: Maculopathy

[joules]

Hello. I have not been here in a while though felt i need to share in hope that there may be something I can do with this?

Firstly, I have absolutely no eye issues whilst looking at anything, it's the same as alway - perfect vision. However, I had my eye screened last week and had a letter come through saying that last years Retinopathy had progressed on to Maculopathy. I therefore called the Screening Programme to find out more about it.
They said that rings had appeared around the previous retinopathy and that it could mean one of 2 things. 1: getting worse, or 2: healing up.

I am simply confused and they have asked me to return in 6 months to see how it will progress. It's scary....

I am worried as my work is on computers and i need my vision (like the rest of us). Not sure what to think now, though doing what I usually do when a scare pops up which is to work extra hard to control my sugar levels!!! The only scare i have ever had really was last year when this started and of course hypo's here n there as per usual, lol...

A bit about my control:
I eat carefully, without having to calculate majorly. Eat Quinoa, bread, salads etc. Stay clear of pasta and white potatoes to avoid massive insulin spikes. I also exercise regularly at the gym every 2 days (since Jan '15) and use green drinks such as the Kiki nature Living super food to stay alkalined as best as i can.

I have read that ginkgo biloba is worth looking at, as well as Vitamin D3, C, K and Quercetin. Heard also something about Vit B that allows 'methylation' to happen for natural eye repair... and Glutathione to expel the toxins once in the liver... <that's all scientific though interesting and i haven't looked into it yet, however seems possitive so far in reversal and healing.

Am curious if anyone has heard further things about and if there is anything i can do at this point apart from the obvious controlling my levels. Does anyone know what is really going on whilst having no symptoms?

Many thanks,
Joules

 

[gemma6549]

I developed maculopathy in one eye but with maintained good control it healed itself.

 

[joules]

That's great to know Gemma and thanks for sharing.
I think the cause with me is that I seem to over compensate on insulin adjustments, leading to hypos daily. I was under an assumption that having my levels low was better than high. 1u of Novorapid for me reduces my levels by 3mmols, which is handy.... am now on a serious case to keep it far better.
The Dr said that after 27 years with diabetes it's normal to get complications. I am simply not accepting that as an excuse tbh!!! Pff

 

[CarbsRok]

The Dr said that after 27 years with diabetes it's normal to get complications. I am simply not accepting that as an excuse tbh!!! Pff

Perhaps you need to educate your Dr or better still he needs to educate himself. This assumption complications are a forgone conclusion makes me so cross. There are members of this forum who have no complications even after 50 years and more on insulin.

So you understand your insulin usage better perhaps ask to go on a DAFNE course or invest in the books think like a pancreas and also using insulin. You shouldn't be having hypos everyday. Keeping BP as well as blood sugar in as normal a range as possible is also high on the list of things to do to help keep your eyes safe.

 

[joules]

Agreed CarbsRok! There's no excuse for Drs talking like that.

The DAFNE course was great, which made a difference.
I think my main issue is how my body reacts with certain foods and insulin admittance time with those food types.

Learning now that avoiding various food is the way forwards, this applies sadly with porridge, pasta, rice and various bread... the carbs seem to take a while to break down and be far higher than the insulin I take for them. Is this normal?? I have a feeling that there are 2 carb times for them, which becomes overly complicated :-/

 

[CarbsRok]

Agreed CarbsRok! There's no excuse for Drs talking like that.

The DAFNE course was great, which made a difference.
I think my main issue is how my body reacts with certain foods and insulin admittance time with those food types.

Learning now that avoiding various food is the way forwards, this applies sadly with porridge, pasta, rice and various bread... the carbs seem to take a while to break down and be far higher than the insulin I take for them. Is this normal?? I have a feeling that there are 2 carb times for them, which becomes overly complicated :-/

Hi Joules,
there is an art to the timing of insulin to the type of foods eaten Other will be able to help you with this as I don't like pasta, rice and bread is gluten free for me
Most people though split their insulin bolus for high fat or pasta meals. Fats and protein do take a long time to hit the system hence why people using MDI tend to split their doses. Pumpers do have the advantage in this department.
If you are ever told by a HCP that complications a definite at certain times in life then just look at them and say oh is that because we are given such cr*p advice by you lot in the first place. It's lovely to watch them squirm

 

[joules]

CarbsRok... yes, there must be an art fo sho, haha. Is there any info on specific break down times of insulin anywhere to be seen? If not, there should be!!!!

Despite being told that Novo Rapid works immediately back in the day, I reckon it takes around 20 - 30mins to kick in. Amazed that I was told that I could administer it during or after a meal!! Pff... I am now getting myself away from this method as that's probably the big issue here with fluctuating sugars and hypos . I have been giving myself alterations here and there, which is the reason for the lows. Hmm. WOW. A light has gone on all of a sudden and that's good news.

I think I'll be ok and glad my eyes are 100% fine atm following 27 years of Type 1. May it continue and the Maculopathy vanish!

 

[CarbsRok]

CarbsRok... yes, there must be an art fo sho, haha. Is there any info on specific break down times of insulin anywhere to be seen? If not, there should be!!!!

Despite being told that Novo Rapid works immediately back in the day, I reckon it takes around 20 - 30mins to kick in. Amazed that I was told that I could administer it during or after a meal!! Pff... I am now getting myself away from this method as that's probably the big issue here with fluctuating sugars and hypos . I have been giving myself alterations here and there, which is the reason for the lows. Hmm. WOW. A light has gone on all of a sudden and that's good news.

I think I'll be ok and glad my eyes are 100% fine atm following 27 years of Type 1. May it continue and the Maculopathy vanish!

Most inject 20 - 30 mins before a meal as need the insulin to hit at the same time the carbs do. Obviously we are all different so trial and error is the way to go. The two books I mentioned to you in a previous post will probably answer your questions re timing etc.
It's great when the light bulb moment happens isn't it The only definite thing with diabetes is that you never stop learning.
Do also remember that BP also plays an important part in your eye health as well.

 

[joules]

Just ordered "Think like a Pancreas" and looking forward to checking that one. It's a great name

Certainly amazing when that light went on - I almost feel freed up now as it was all just too confusing. Amazing that doctors never even update info with patients about insulin etc. It's insane!

My BP is normal, though always around 140/70 when at the Dr's as am an emotionally creative being, lol. At home its usually 120/70. I exercise 3x a week now too, which is great also for my back as it was killing me and feeling a whole lot healthier now in every way.
My blood sugars seem much more controlled with exercise too. I however find that 30 mins in, I start running low. I cannot stand those glucose tablets!!! Find that I need around 10 of those when exercising, then it runs low for the next 8 hrs or so. i think bananas save the day in that department, as I just learnt yesterday that they release the sugar from the liver, keeping it sustained

 

[CarbsRok]

My blood sugars seem much more controlled with exercise too. I however find that 30 mins in, I start running low. I cannot stand those glucose tablets!!! Find that I need around 10 of those when exercising, then it runs low for the next 8 hrs or so. i think bananas save the day in that department, as I just learnt yesterday that they release the sugar from the liver, keeping it sustained

I know very little if anything about Lantus, so you need to ask others about this but is there any reason not to lower your Lantus for exercise days? I would also consider the meal bolus you have before you exercise perhaps don't have so much insulin then and see what happens.
If you can't sort your insulin/hypos for exercise then if you want one ask for a pump. Do though educate yourself well in how insulin, exercise and foods affect you before asking for a pump.

 

[joules]

Hmm.. I would prefer to keep my sugars at a good level rather than running high before exercise. For me, i think it's more the case of eating before and after, then reducing insulin after. i've heard Lantus is a bit of a nightmare for exercise, whilst Glargin; am not sure.

Got told yesterday about a new insulin called "Tresiba" which runs in the background for up to 42 hours and reduction in hypo's in the trials. Maybe it's worth checking out?

Will be seeing a dietitian next week...