Three years T1 and already retinopathy

[SirHarryLewis]

3/4 years ago i got the diagnosis of type 1. I am 39 now.
Apparently i have very mild first stage retinopathy in one eye. My consultant said this was certainly very quick considering my control was so good.
She then went on to tell me that some people get all the complications in spite of very good glycemic control and that I could be dammed either way


My previous consultant told me that that very very few newly diagnosed type 1s are presenting with complications any more and that most of the horrifying stats come from older people who didn't have the advantages we have. I asked him about this after reading that I have a 30% chance of renal failure at some stage.

Anyone here able to point me to newer stats, based on diabetics of the last 20/30 years or do you have information on this from your own consultants.

 

[noblehead]

That is a shame but much can be done to improve the situation.

First off keep your diabetes under control (I appreciate you said you do already) and try and keep your bp and cholesterol under control too, make sure you also eat plenty of fruit and vegetables in your diet as this is said to aid eye health, also make sure you attend your regular eye checks so that they can monitor your progress and advice accordingly.

Sorry I don't have the stats but they do say retinopathy can be seen after 20 years of diabetes, however we do have members on this forum who have had diabetes for 20,30,40 & 50 years yet don't have retinopathy.

 

[SirHarryLewis]

Thanks for that. I will do that.

Incidentally, is this retinopathy ever only seen in one eye. It seems to be only one eye at the moment so there is some hope that is incidental and not diabetic related.

 

[noblehead]

Thanks for that. I will do that.

Incidentally, is this retinopathy ever only seen in one eye. It seems to be only one eye at the moment so there is some hope that is incidental and not diabetic related.

It can be either one or both, have a chat with the Ophthalmologist and they will discuss matters with you, generally they are very good and knowledgeable about diabetes as a good majority of patients they see have diabetes.

The following site is by far the best when it comes to diabetic retinopathy, have a read round:

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

 

[mopsy21]

Hi SHL - I'm sorry to hear of your retinopathy. Sorry, but it can be in both eyes, if my experience is anything to go by.

My story - diagnosed T1 in October 2012 at the age of 57. Since then, HBA1c has come down from 11.4 at diagnosis, 7.4 in Aprl 2013 ad 6.8 in October 2013 - so reasonably good control, I think. Healthy eating, low blood pressure, choresterol reducing etc. The first Diabetic Eye Screening in early 2013 revelaed mild retinopathy in one eye and mild maculopathy in the other, and I was.referred to the Eye Clinic at the local hospital Subsequent monitoring at the Clinic ended up wth an appointment at a consultant's clinic two weeks ago. At that appointment, I was told that, although the left eye had actually improved, the right eye had a macula oedema. I'm currently waiting to start a course of injections (into the eye). I was told that the oedema was due to the diabetes - after only 14 months! No further discussion at the Eye Clinic, but I'll certainly query it with the diabetic consultant/nurse at my next appointment at the diabetic clinic.

My point here is that I guess sometimes it really is just one of those things. The only thing I can think of is that I was perhaps pre-diabetic for years - if that's possible with no symptoms. I'm hoping it's not that and that it really is coincidental! The important thing is that one eye has actually improved over the year, and, as Noblehead said, good control helps in lots of ways.

All the best.
.

 

[SirHarryLewis]

Hi SHL - I'm sorry to hear of your retinopathy. Sorry, but it can be in both eyes, if my experience is anything to go by.

My story - diagnosed T1 in October 2012 at the age of 57. Since then, HBA1c has come down from 11.4 at diagnosis, 7.4 in Aprl 2013 ad 6.8 in October 2013 - so reasonably good control, I think. Healthy eating, low blood pressure, choresterol reducing etc. The first Diabetic Eye Screening in early 2013 revelaed mild retinopathy in one eye and mild maculopathy in the other, and I was.referred to the Eye Clinic at the local hospital Subsequent monitoring at the Clinic ended up wth an appointment at a consultant's clinic two weeks ago. At that appointment, I was told that, although the left eye had actually improved, the right eye had a macula oedema. I'm currently waiting to start a course of injections (into the eye). I was told that the oedema was due to the diabetes - after only 14 months! No further discussion at the Eye Clinic, but I'll certainly query it with the diabetic consultant/nurse at my next appointment at the diabetic clinic.

My point here is that I guess sometimes it really is just one of those things. The only thing I can think of is that I was perhaps pre-diabetic for years - if that's possible with no symptoms. I'm hoping it's not that and that it really is coincidental! The important thing is that one eye has actually improved over the year, and, as Noblehead said, good control helps in lots of ways.

All the best.
.

Thanks for your response. As you say, just one of those things.

Im surprised you would be pre-diabetic for so long if it were Type 1 but it seems but im surprised at how much variation we see with this disease.

My doctor as I have said seemed surprised to at the report of retinopathy at such an earlier stage but having read this paper, maybe its not such a surprise after all to see some minor level. In fact they suggest there is some mild signs of it in nearly half the patients with less than 5 years. Anyhow, thanks for your support. I wish you well. You seem to be getting on top of it.


http://care.diabetesjournals.org/content/24/3/522.full.pdf

 

[SamJB]

I had background retinopathy around 4 years after diagnosis. Do you mind if I ask what your HbA1c has been like since diagnosis? Mine was in the 8s and 9s for my retinopathy to appear.

Whilst diabetes certainly increases the risk of retinopathy, non-diabetics can get it too. If your HbA1c has consistently been in the 6s (where your risk if retinopathy is near unity with the non-diabetic population) then chances are you could just be susceptible to it.

 

[phoenix]

I have LADA, a slower onset form of T1 so before diagnosis my glucose levels were probably very up and down. Fasting glucose was very high at diagnosis but HbA1c about 7.9% so not that high.
About three years after diagnosis they found tiny amounts of background retinopathy using fluorescein angiography. At the time, I had an HbA1c of 4.9%, (too low but that's another story), even two months after diagnosis it was only 6.1% and since then it had been in the 5s. So basically I didn't have high glucose levels.

On diagnosis the retinopathy examination didn't reveal anuthing. this was using a slit lamp . The following year I had the same check and was told that was OK , I also decided to pay for a photo in the UK so I had a record .As far as I know this was clear
The next year when I went onto a pump ,the French rules meant I had to have the fluorescein angiogram. This showed a few very small micro aneurisms . All my yearly checks are now done with the fluorescein.
Now it might be that it was always there and just didn't show up with normal observation. (The DCCT paper that was linked to shows quite a few that had retinopathy that showed up with fluorescein that didn't show up on colour photos.) My eyes aren't clear, the optho still writes about tiny signs of retinopathy but in almost 6 years they haven't got any worse.

 

[smidge]

Hi there!

Like Phoenix, I have LADA and had it for an unknown period of time before diagnosis. I keep my HbA1c as low as possible now and have been lucky so far. Despite the good HbA1c, I get those awful LADA after food spikes sometimes and that worries me greatly as I believe when it comes to retinopathy the individual spikes can be damaging in themselves, so the HbA1c doesn't tell the whole story. Keeping tight control - HbA1c and reducing spikes - is the best way to reduce risk, but as Sam says, the risks are still there, but greatly reduced.

Take care

Smidge