A big scare after the eye clinic

[zombiegirl]

Hi All,

So I've recently had my retinal eye screening - it's been about a year since my last one due to moving house and waiting ages to get referred in the new area. There were a lot of changes/bleeds in my eye including a worrying looking floaty white thing right in the middle. The doctor says it's still regressable at this stage and I just need to be even tighter with my sugar levels.

The thing is, this has scared me so much that I've pretty much been teetering on the edge of a hypo for the last 3 days (since the hospital visit). I'm scared to let my sugar go over 6, which means I'm having about 3 or 4 hypos a day. I'm scared to adjust my insulin as I seem to be really sensitive to it and the slightest reduction makes my levels go high.

I can't go on like this, but what can I do? Has anyone had a similar experience? Even as I'm writing this I'm 4.1 right before bedtime, which means I know I'll wake up hypo in the middle of the night, but if I eat something now I just know I'll wake up too high in the morning, grr!

Should I be so scared? How tight does my control need to be for my eyes to get better? Please help!

 

[Unbeliever]

I have been attending an eye clinic for the last si years and have had a lot of treatment for retinopathy , macullopathy and worst of all macular oedema.
I am T2 and all my problems occurresd as a result of my levels being brought down too quickly.

I have always been old and have found it to be true for me- hat the most important thing is stablility . Maybe not sky high and stabkle but hyoos are as bad as spikes. Lowering my HBAIC by 2points caused all my problems to recur after they had been stabilised.So maybe you should think abut aiming for a whatever is a lowish but sustainable level for you.
You have o be patient ttoo, it won't work right away.
Hope this helps.

 

[SamJB]

I've just reversed background retinopathy by reducing my HbA1c into the 6s fromyou the 7s/8s. I did this by low carbing and having around 1 reading above 10 per week or so (testing around 7 times per day). Low carbing reduces the frequency of hypos too. I have maybe 1 mild (upper 3s per couple of weeks or so) The philosophy being that low amounts of insulin mean smaller mistakes.

 

[Thundercat]

Hi Zombiegirl (great name by the way:smile. I have just had laser treatment so I empathise completely with the fear you are going through. The points mentioned already are so true. A steady bg level is better than peaks and troughs even if it is a bit higher than you are aimimg for. A gradual decrease in numbers is a safer bet as a sudden drop can cause problems and speaking for myself, since starting a relatively low carb diet my hypos are less frequent and less severe and I have not had a night time hypo. According to my ophthalmologist retinopathy is reversible so if you aim for the gradual reduction to a level you can maintain and give low carbing a try you will be well on your way. My heart goes out to you - it is a scary experience. But try to remain optimistic it is not inevitable that it will progress.

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[zombiegirl]

Oh dear, I didn't realise that troughs as well as peaks could do damage...yikes. I'll try low carbing and reducing my insulin, I guess I'll have to go through a bit of trial and error to get it right. I really hope I can reverse the damage, there's nothing like a shock like that to make you suddenly feel motivated! Thanks for the advice guys, it helps so much just having people with similar experiences to talk to

 

[SamJB]

If you want to give low carbing a try, buy Richard Bernstein's Diabetes Diet book, where the rules are laid out. He's a bit tight with his carb prescriptions (6g for dinner, 12 for lunch and 12 for dinner). I don't follow them I just avoid bread, pasta, rice etc. It took me a couple of weeks to get used to, in that I still needed to take insulin when I wasn't eating carbs, which was counterintuitive to me, but it's paying dividends now. Sugar levels never better, background retinopathy gone. Best decision I ever took regarding my diabetes.

Take a look at this recent post:

viewtopic.php?f=19&t=44100

Like me, the poster has got rid of her background retinopathy by low carbing.

 

[Sid Bonkers]

Hi Zombiegirl, I would suggest hat you make an appointment to see your Endo consultant and explain your fears to him/her and ask how best to address your bg levels in order to "regress" the retinopathy damage.

If you are not under an Endo's care I would respectfully ask your GP for a referral ASAP, quoting your Optometrists advice.

Try not to worry if your Optomotrist has told you it is reversible it almost certainly will be but get the right advice :thumbup:

I had background retinopathy at diagnosis and by keeping tight control for a year it had disappeared by my next screening and has thankfully, so far, not returned.

 

[noblehead]

The thing is, this has scared me so much that I've pretty much been teetering on the edge of a hypo for the last 3 days (since the hospital visit). I'm scared to let my sugar go over 6, which means I'm having about 3 or 4 hypos a day. I'm scared to adjust my insulin as I seem to be really sensitive to it and the slightest reduction makes my levels go high.

I can't go on like this, but what can I do? Has anyone had a similar experience? Even as I'm writing this I'm 4.1 right before bedtime, which means I know I'll wake up hypo in the middle of the night, but if I eat something now I just know I'll wake up too high in the morning, grr!

Should I be so scared? How tight does my control need to be for my eyes to get better? Please help!

Zombiegirl, understandably it has scared you to the point where you want tight to control to halt the progress of the retinopathy but you may be doing more harm than good.....as Thundercat and Unbeliever have pointed out, sudden tightening of bg control can make the retinopathy worse and you should lower it gently over a period of months rather than weeks.

Echoing what Sid said you should ask for a referral to see the Endo at your hospital diabetes clinic who will help you stabilize your bg control with a view to lowering your Hba1c, going to bed on a reading of 4.1 knowing that you'll hypo during the night is counter-productive and will just mean your bg is swinging from high to low....which you want to avoid with retinopathy!

Whilst at the diabetes clinic you need to get a bp check and ask what your latest cholesterol results were if they can access them, control bg is very important but good bp control is essential too as it takes the pressure off the eyes, I think the recommendation is 130/80 or below although my own HCP wanted mine lower and recommended a level of 130/70, if your bp is above 130/80 or borderline then they may recommend bp meds as a way of reducing your bp (if lifestyle changes don't work).

Just one thing, if you smoke then give them up, smoking increases the chances of diabetic retinopathy occurring and make the condition worse to treat, if you exercise try not to do anything to strenuous and avoid any heavy lifting until you are told otherwise, next time you see your Ophthalmologist ask them any question you may have about control, a good percentage of the patients they see are diabetics and I've always found them quite knowledgeable about the condition and the advice they have to offer.

Good luck!!!

 

[Type2_2000]

Hi Zombiegirl.

I can't really add to the advice you've already had but I just wanted to say that I really can relate to how you feel as I'm in a similar situation.

At my last screening I was found to have had some haemorrhages and some evidence of leakage (called Hard Exudates). I was told to tighten up on diabetic control and did so - I went from a HBa1c of 88 in March to 48 in June! I was quite anxious about this as its quite rapid and went back to both my eye clinic and Diabetes Consultant last month. Both told me that whilst a rapid reduction can temporarily make things worse, it is generally Diabetics who have had very poor or no control for a long time and who suddenly improve control very quickly e.g. T1's who go on to pumps and normalise their BG in a few weeks having had Hba1c above say 100. Stable figures are better than very low ones and in the short-term good blood pressure and Cholestorol control will be most beneficial (this is all stuff that's been mentioned already). Also if retinopathy does get worse as the result of rapid lowering that doesn't mean that it will necessarily get worse to the point that you need treatment. Having said that a gradual lowering is a good precaution and hypos in themselves can't be a nice experience. I'm not suggesting that rapid lowering isn't a risk but that it is possible it might not happen.

I would definitely go back to see your specialists. In my case my eye specialist was irritated to be seeing me again so soon as there was no worsening (I took this irritation to be a good sign!). However my Diabetes Consultant was really nice and took the time to talk me though the report from my eye clinic and also address my concerns.

I wish you all the very best.






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[Patch13]

As SamJB said it is definitely worth reading Dr Richard Bernsteins Diabetes diet book if you are thinking of low carbing as it really helped me. Even if you decide not to low carb it is a very interesting book as it has lots of info in that I found really helpful even after having diabetes for a very long time before reading it!


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[zombiegirl]

I really wish my various specialists had given me these pieces of advice instead of rushing me in and out the clinic! Thank god for these forums eh?

I'm adopting the gradual lowering approach now. If I'd known that lows were as dangerous as highs I probably wouldn't be in the situation I found myself in last week. I went to bed with a sugar of 4.9 and, scared to let it get any higher, didn't do anything about it. Next thing I knew I was being roused by paramedics, having been found unconscious after having a full blown seizure! I'm now battered and bruised, confidence and self esteem at an all time low and have probably made the bleeds in my eyes worse! Sorry to be a negative nelly but it seems like since I got the diabetes under control, everything is coming to a head as far as complications go, so I'm feeling rather fed up.

On the plus side, my levels are now excellent, so thank you all again for the advice.

 

[the_anticarb]

Hi Zombiegirl just to add my two cents worth, I understand all too well the panic and fear that can set it when you're told you have retinopathy or worsening retinopathy. I had poor control for the best part of 20 years then found out I was pregnant and rapidly tightened up to avoid damaging the baby, going from a hba1c of near to 10 :shock: to below 6 in the space of weeks. Baby was fine but my eyes suffered serious damage and I really did think at one point that I would suffer serious permanent loss of vision HOWEVER one year, one vitrectomy and lots of laser sessions on it does seem to have stabilised and my doctor says this is due to my hba1c being stable and also the laser which is giving protection to the eye. She showed me pictures of my eyes before the laser and now, and you can see what a difference there is so even when the retinopathy is advanced it is still reversible to a certain extent with laser.

A year ago I was so depressed and inconsolable, also the thought that I had brought this all on myself added to my pain (not saying you feel like this but many diabetics with retinopathy do), but now I can see that it has all turned out ok and I can still see as well as before with both eyes open (a little damage to one eye but the other eye compensates).

So beware the sudden drop in hba1c but just wanted to let you know if the worst happens and it does get worse it does not mean you are going blind, lots of us on here have been treated for advanced retinopathy and made it out ok.

PS personally I don't think individual hypos will cause eye damage, I think its the instability in your hba1c that will do it ie going from high to low over a period of weeks or months. Apparantly it takes around 3 years for things to stabilise if you do do this, one of the cruellest things about retinopathy I think that just when you try to improve it it has the potential to make things worse. But I wouldn't worry about individual hypos so much as what your hba1c is doing - although I'm not an expert this is just my personal opinion after suffering from the condition so others are free to have a different viewpoint