Help us write an intro about Retinopathy...

[ButtterflyLady]

Since joining this wonderful forum 5 months ago I've seen many instances where diabetes newbies have been informed and reassured by the wonderful "cut and paste" introduction to diabetes that Daisy and others use.

I'd love it if there was one about Diabetic Retinopathy. Personally, the message "control your blood glucose to prevent complications" is all well and good BUT what about that anxiety most of us seem to feel at the start if we are told we might already be heading down the path of complications. We know we can't turn it all around in a few months just by low-carbing and whatever else we can manage to do.

So, I'm taking a step and suggesting we put our heads together and write a few words for the beginner about the R word... the dreaded retinopathy.

If it's already been done, you know what to do ;-) Cut and paste away...

Thanks everyone

 

[Unbeliever]

Maybe a note to Benedict at admin would be the way to go ? These things are never as simple as they might appear.
It is one thing to help each other with our own experiences but another to publish what could appear o be medical advice.

I am not saying it won't be possible but a great deal of ime could be wased if Admin is niot consulted o begin with

 

[ButtterflyLady]

Good points, I'm sort of consulting with admins by doing this out in the open - if they don't like the idea they can say so in the thread. I don't see the end product as any different to the guidance and opinions expressed in threads. It's just a little more organised into "introductory" type info that's all. I would have a go at writing it myself but I have a lot on my plate at the moment.

 

[noblehead]

Here goes:

Control blood glucose, keep bp and cholesterol in check and eat a varied diet rich in fruit and vegetables, always always attend your eye screening appointments and any changes should be reported immediately.

 

[ButtterflyLady]

For people who do attend their eye screening appointments or report changes, and are then told something is wrong, what can we say to them to help reduce their anxiety?

 

[the_anticarb]

Happy to help out on this. Retinopathy is however an unpredictable beast. A few of us have found that our retinopathy increased, often dramatically, when bg's were lowered after a period of poor control. Is that something we should be warning newbies about (I mean those newly diagnosed with retinopathy not newly diagnosed with diabetes) ? Would that warning do more to increase anxiety than decrease it? It is very very confusing after being told all your diabetic life to keep your bg's controlled, to find out that that can actually make retinopathy worse for a while. I'm quite certain that my retinopathy only got bad after I got my bg's under control (ok I was pregnant too but I think the rapid drop in hba1c is what mainly done it).

I actually think the website noblehead refers people to a lot http://www.diabeticretinopathy.org.uk is really good for people trying to get their head around the subject plus it is written by a doctor. How's about we just direct people there instead? (if admin agree)

 

[phoenix]

A few of us have found that our retinopathy increased, often dramatically, when bg's were lowered after a period of poor control. Is that something we should be warning newbies about (I mean those newly diagnosed with retinopathy not newly diagnosed with diabetes) ?

I think that warning should be in capitals in red!
Yes, I agree with you that the site you link to is the best source of info I know of.

 

[xyzzy]

I've tended to avoid spelling out the actual real dangers of retinopathy in the stuff I post to new members as I'm never sure how strong a message should be delivered as I don't want to frighten people away. In many ways you do need to deliver a message which grabs peoples attention so that they really do begin to take things seriously regardless of what they choose as their final choice of how they want to control levels. Once you have their attention then directing them to the http://www.diabeticretinopathy.org.uk site would seem to be a good idea.

There seems to be quite a lot going on between WHO and NICE regarding hBA1c and retinopathy. This WHO document http://www.who.int/diabetes/publications/report-hba1c_2011.pdf which is all about hBA1c uses a lot of stuff about retinopathy. There was an expert N.I.C.E committee that had to report if the UK was compliant with what was in the WHO document regarding hBA1c. It looks like this is where the 6.5% target hBA1c may be coming from and why the http://www.diabeticretinopathy.org.uk site is stating to aim for 6.5% and below. The reason for the pressure can best be seen in the graph I've uploaded which shows the chances of developing retinopathy problems increase rapidly in people with hBA1c's above 6.5% so the more people who are informed about the dangers the better in my opinion.

 

[phoenix]

I've tended to avoid spelling out the actual real dangers of retinopathy in the stuff I post to new members as I'm never sure how strong a message should be delivered as I don't want to frighten people away.

I still think you need to be cautious about scaring people into reducing their glucose levels quickly. A gradual reduction may be better for many people.

http://medweb.bham.ac.uk/easdec/retinop ... ession.htm

This obviously mostly applies to those who have had diagnosed diabetes for sometime but can unfortunately also apply to some newly diagnosed people. They could have had D for some time before diagnosis. It is thought that it takes at least 5 years of hyperglycaemia before retinopathy becomes evident. No-one knows how long any individual has had diabetes before diagnosis.
There a lot of studies that show the presence of retinopathy in a (varying ) proportion of newly diagnosed people. ( eg 20% in a US study, 9.9% in Australia and 7.6% in a Netherlands study where people were diagnosed from a screening programme rather than a visit to the GP with symptoms)

 

[xyzzy]

A gradual reduction may be better for many people.

Appreciate that Phoenix. Will read up on the evidence. In any event I found the WHO graph I uploaded very shocking. The rapid rise in risk is horrible.

[edit - sorry Phoenix found the stuff at the link you provided if you have already read the previous version]

 

[noblehead]

This obviously mostly applies to those who have had diagnosed diabetes for sometime but can unfortunately also apply to some newly diagnosed people. They could have had D for some time before diagnosis. It is thought that it takes at least 5 years of hyperglycaemia before retinopathy becomes evident. No-one knows how long any individual has had diabetes before diagnosis.

That is a very good point Phoenix :thumbup:

 

[the_anticarb]

Pheonix forgive my ignorance but is the graph skewed deliberately as the x axis has increases in hba1c at 0.2 intervals from 4.8 to 6.4 then has the same increases in lenght for much bigger hba1c so the next increment is to 6.9 then 7.8 then 10.3...which to me makes the spike upwards after 6.4 look much spikier? Not disagreeing with the message I am sure it is correct that retinopathy increases greatly after 6.4 but on this graph I can't see the proportionate increment as the end is all skewed! I've seen other graphs where the increment tends to happen around the 7.0 mark, that's where the curve really seems to take off, but these were shown with equal increments along the x axis so it did look different.


Also, a question not sure if anyone knows or how this would be researched, but I've often wondered what the effect (if any) of very short term (a few hours) high blood sugar would have on retinopathy - obviously this would not be detected in a hba1c. Sometimes I can find my insulin lags a little behind my blood sugar, particularly if I eat a lot, and whilst it always comes down a few hours later it may be high for a few hours whilst the insulin is playing catch up. I don't know what effect this may have on retinopathy. Even the dsn's at clinic say not to bother with testing post prandial its only the pre meal I need to worry about, but I'm not sure I believe them....

 

[phoenix]

It's not my post but I agree.
I've found this graph of HbcA1c/prevalence from the same paper makes the progression clearer



anticarb: the only evidence that I know about for that one is the DCCT/EDIC trials That shows no effect from intraday variability just HbA1c. The trouble is that they only looked at a days measurement (7 fingerpricks) every 3 months albeit with some subjects up to 20 years.

This study has shown that blood glucose variability does not appear to be an additional factor in the development of microvascular complications. Also, pre- and postprandial glucose values are equally predictive of the small-vessel complications of type 1 diabetes

http://www.ncbi.nlm.nih.gov/pubmed/16801566

From a personal point of view I also wonder about the effects of hypos. Normal screening (including one I paid for in the UK because they don't do photos for normal screening here, the opthalmologist uses a slit lamp) showed no retinopathy for the first 2 years.
After diagnosis I always had HbA1cs in the 5s and eventually one of 4.9% (too many hypos said my doc and was probably correct) As part of the rules here I had to have a fluorescein angiogram to go on the pump and lo and behold there was evidence of microaneurysms. Now I knows that this is just classified as background so at present no real worry but where did it come from? It certainly hasn't gone away.

Did I have too many hypo ? too large drops?
I never had high glucose levels very often but I could certainly drop from say 8mmol/l down to 3mmol/l in minutes when running so I did have rapid drops. Or does the angiogram reveal things that 'normal' checks don't. I'd love to ask the opthalmologist but he just does the test and writes the report; very little chance to ask, especially when you are constrained by a lack of fluency in the language.

 

[the_anticarb]

I really hope hypos don't affect it, can't cope with that as well as the highs! I've been a bit naughty lately and playing the eat what you like and inject a load of novorapid game - means I have been having a few swings in my bg's but no sustained highs. I know not ideal but I've been trying to settle into my new job and I guess i just took my eye off the ball diet-wise for a couple of weeks. I'm back on the wagon now, but hope not to have done any more damage to my eyes. I think whether they stabilise or not will depend on a number of factors, most of them probably not in my control, but I want to help the factors that I can control.

 

[Unbeliever]

I don't think the OP had it in my mind to warn people about their lifestyles and HBAIC targets etc etc. I understood her to be
wanting to give a few words of comfort and advice to those who may have been diagnosed with retinopathy or asked to attend a clinic for further checks etc
We have had many posts on this subject over the past few months. Indeed my reply to her was to prevent people jumping in with their pwt theories. No one knows the answer to how many years your bloods have been running high or at what stage and which individuals will be affected.
Naturally everyone wisheds to avoid complications and it is fine to give general advice about the bes way to do his ut it is a little late when it has happened.
As I have said many times , I was referred to the hospital when my doctor thought he saw something on the macula in the days before retinal screening was introduced in my area. Then followed a year of attending the clinic every month for different tests but ther were only the tiniest traces of diabetic changes.
I attended the hospital on Thursday and the Dr told me to return on the following Tuesday to be discharged by a consultant .
On Monday I finished taking one medication and started on another. My bgs immediately fell . When I wnt to see the consultant on tuesday I had suffered a massive bleed and have been treated for it for he last five years. And I do mean the last fiveyears.
Not annual checks but 2 monthly with the inervening period taken up by treatments etc..
During this ime I have learnt that there are very, very few generalisations to be made about this condition.
of course T1s who have been diabetic for many years are at great risk of developing it, I really do not think anyone knows for T2s.

Then when you have been diagnosed with it so much seems to be changing that it is obvious s that treatment aljoough improving is still in its infancy.
T1s seem perhaops to respond better to laser All opthalmologists appear o have been indoctrinated with the " 7 or less" mantra but now that they are seeing more T2s can see that this is not necessarily a factor. Maybe this figure was based on T1s.
The best advice to anyone is still to take it steadily. Noone really knows. Now they think if ibgs have been running high for some time then suddenly dip dramaically then this is what causes the problem. It therefore follows that hypos are as dangerous as hypers. The difficulty is in knowing how to reduce bg slowluy and steadily- not so easy as noone knows how any individual is likely to react to any therapy.
Which is why I feel it is extremely important that GPs and Pratice DSNs are aware that this can happen/ Maybe the patient who hs manged to reduce his/her levels dramatically ober a shot period should be gibve n an extra check.

Anyhow , just as in the recent "Something must be done " thread [although it mnever was} I feel that any advice should be kept simple.
Those recently old that their screening showed background changes and don't know whay that means - or those referred to the
hospital for scary-sounding procedures and checks want pracical , simple down to earth advice to deal with the situation they are facing . of coutrse reducing their BG levels , blood pressure and cholesterol are essential but they should have been made aware of this already - and the hospitals will check on this.
We don't want to scare people into drastic measures which may well make hings worse. I see litttle point at that stage in telling people that their HBA2Cs should have been kept at 6.5/ Just for the record mine has been well below that for he past few years and it has actually made the condition worse. Taking extra ramipril as a precaution also caused a masssive bleed and made hings worse.. So there are no constants and it can't all be worked out as a mathematical formula or shown on a graph.
No disrespect to anyone - I know you all mean well - and perhaps you cope better by believing that the lowest possible levels are the way to go but I have spoken to so many people professionals and patients durng the many , many hours I have spent in the hospital that I don't believe this is the case.

A few simple sentences of reassurance to those who think they are developing retinopathy would be of more use to the individual.

There is very good information on the internet about retinopathy etc but eye clinics are very busty places - no just dealing with diabetic eye conditions and noone really has the time to alk to you about it - and they are often reluctant to do so in the beginnig.
Just as the newly diagnosed diabetic will find advice here that he won't get elsewhere from those who are actually suffering from the condition , those diagosed or suspected of having retinopathy need to hear from hose already being treated for it.
At thayt stage they are not interested in theories.
,

 

[the_anticarb]

Hi Unbeliever

I'm not sure what you mean when you relate having a period of poor control followed by a period of good control accelerating retinopathy to having hypos. The two are not the same! As far as I understand it it works like this.

When blood sugars are high, damage is being done to the retina but this is somewhat masked because the high blood sugars increase the blood flow (perfusion) so the retina is still getting enough oxygen to prevent the release of growth factors which cause new vessel growth.
When blood sugars fall (to normal levels) over a period of time, this means that the blood flow to the retina decreases. Suddenly the retina realises it's not getting enough oxygen. It releases growth factors - new vessels etc.
I don't think hypos have much to do with it as they are of such a short duration (minutes?) that it wouldn't affect the circulation within the eye to the degree that would be needed to release growth factors etc.
This is just my opinion but its based on what I've read on the diabeticretinopathy.org website.

It makes perfect sense to me - all the time my blood sugars were high I thought my eyes were not too bad but they were - just the increased blood flow was masking the oxygen-deprivation problem. Decreasing my bg's allowed the true state of ischaemia (oxygen deprivation) to be revealed.

According to the website it takes up to three years for the problem to right itself after the new lower hba1c is attained - of course laser will probably be needed too but it can take up to three years for the retina to get used to the new levels of oxygen perfusion so that no more laser is required.

 

[ButtterflyLady]

Unbeliever - thanks for your post, you're right I was looking for simple text we can use to offer reassurance to those newly diagnosed with retinopathy.

I went through considerable stress and distress about this recently, and it would have been nice to find some information about retinopathy here that didn't scare or confuse me further.

There is something exponentially scary about being told your eyes are affected. For me, this coincided with episodes of sudden, unexplained blurred vision for the first time in my life. I cannot express in words how scared I was.

 

[Unbeliever]

Yes of course CAtLady. We are not opthalmologists we want a lay person with similar experience to tell us how it is for them and learn frm their experience,

Anticarb , my post was my opinion. I thought you mentioned hypos and being connected with bleeds and I said I wouldn't be surprised. If I have misunderstood or misread I apaologise but all my posts are about my own eperiences and bits and pieces of informayion I have gleaned from my own research over 5 years into my wn condition as it is relevant to me.

For examople the part about the three years of good control before matters improve was something I recently told you about ao another thread. I have never set myself up as an expert in opthalmology or anything else. However , when I sometimes over five years have had o attend he hospital weekly for 4'5 weeks at a time and have never had a break of more than six weeks then I do have a lot of experiences as a patient.

My research is purely so hat I have a better understanding of my condiion for when I speak to the consultant so I don't waste his time asking silly questions and don't panic at the prospect of procedures he might suggest. Just to keep up in effect.

Sometimes on here, if it is relevant , I will mention little ttbits which might be relevant to certain posters and if they are interested they can chek for themselves - just as you did with the three year business.

Just as some people respond better to a simple explanatio about diabetes when they are first diagnosed , then others want a simple gude on what o expect with retinopahy treatment or monitoring.

That is what I meant when I said originally that we had to be careful if catlady's suggestion were to be adoped about seeming to offer medical advice.

There are no magic formulae and people do not want to be bombarded with information which means little to them in the beginning. Too much research can be be counter productive especially with retinopathy It is best taken a step at a time
raher than trying to research the whole subject.. Many would find this confusing and terrifying . I think we sometimes see that here.

Of course everyone'smind works in diffferent way so if you are heavily into the scientific side then thats fine for you.

Catlady has confirmed that her suggestion was a simple guide to those distressed by signs or warnings of visual problems .
I agree with her.
It is unfortunate that simple measures which or simple explanations which could help people so often get bogged down here.

Often its a case of eople being unable to see the wood for the trees.

 

[phoenix]

I think it should be possible to explain what background retinopathy is .Here from DUK.

The earliest visible change to the retina is known as background retinopathy.

The capillaries (small blood vessels) in the retina become blocked, they may bulge slightly (microaneurysm) and may leak blood (haemorrhages) or fluid (exudates).

It may remain stable and some people are told on subsequent visits that there is no evidence of it on future examinations.

Background retinopathy causes no problems to vision but it can progress and may need treatment . This happens when weak blood vessels grow from these already damaged vessels and these in turn bleed (proliferative retinopathy) There can also be a problem when there is a lot of retinopathy in the central area of sight (maculopathy)

That there are measures people can take to reduce the risk of progression

Basically a summary of this page:http://medweb.bham.ac.uk/easdec/back_diabetic_retinopathy.html
main things to be aware of
glucose levels, tends to occur after period of poor control (gradual reduction if high )
Nevertheless, there are people who appear to develop retinopathy with relatively low levels
(I'd include this because I've seen people say it happens, we don't know if there were high levels for a long time before diagnosis and even on Xyzzys graph there are a small number of people developing it with quite low HbA1cs.)
diet: veggies, oily fish, low salt, fibre, healthy fats (controversy over sat fat on here)
weight
smoking stark figure that 20 a day triples/quadruples retinopathy
exercise
BP control (particularly that docs may use ACES/ARBs as these are thought to protect against retinopathy/nephropathy
cholesterol control(bit of controversy on here that one!)

pregnancy ?????

or as we started is it better just to link to the Good Hope site?

 

[the_anticarb]

Yes of course CAtLady. We are not opthalmologists we want a lay person with similar experience to tell us how it is for them and learn frm their experience,

Anticarb , my post was my opinion. I thought you mentioned hypos and being connected with bleeds and I said I wouldn't be surprised. If I have misunderstood or misread I apaologise but all my posts are about my own eperiences and bits and pieces of informayion I have gleaned from my own research over 5 years into my wn condition as it is relevant to me.

For examople the part about the three years of good control before matters improve was something I recently told you about ao another thread. I have never set myself up as an expert in opthalmology or anything else. However , when I sometimes over five years have had o attend he hospital weekly for 4'5 weeks at a time and have never had a break of more than six weeks then I do have a lot of experiences as a patient.

My research is purely so hat I have a better understanding of my condiion for when I speak to the consultant so I don't waste his time asking silly questions and don't panic at the prospect of procedures he might suggest. Just to keep up in effect.

Sometimes on here, if it is relevant , I will mention little ttbits which might be relevant to certain posters and if they are interested they can chek for themselves - just as you did with the three year business.

Just as some people respond better to a simple explanatio about diabetes when they are first diagnosed , then others want a simple gude on what o expect with retinopahy treatment or monitoring.

That is what I meant when I said originally that we had to be careful if catlady's suggestion were to be adoped about seeming to offer medical advice.

There are no magic formulae and people do not want to be bombarded with information which means little to them in the beginning. Too much research can be be counter productive especially with retinopathy It is best taken a step at a time
raher than trying to research the whole subject.. Many would find this confusing and terrifying . I think we sometimes see that here.

Of course everyone'smind works in diffferent way so if you are heavily into the scientific side then thats fine for you.

Catlady has confirmed that her suggestion was a simple guide to those distressed by signs or warnings of visual problems .
I agree with her.
It is unfortunate that simple measures which or simple explanations which could help people so often get bogged down here.

Often its a case of eople being unable to see the wood for the trees.

No worries Unbeliever, just I was looking into the science of the early worsening phenomenon and couldn't see how hypos would fit in to the explanation given on the good hope site. But none of us on here are doctors (as far as I know) and even the doctors themselves dont' appear to know too much about retinopathy, there are a lot of unexplained things about it and Mr. C said it was a very individualised disease, by which I think he meant it is difficult to predict because different for everyone.