help, i've now got retinopathy.....

[iklpixi]

Hi, this is my first time using this post and so i've spent this afternoon browsing previous posts in a desperate attempt to find some honest and upfront info from others who're living this not so good reality that is diabetes...

Quick background to me: diabetes Type1 for 18 years, diagnosed with proliferative retinopathy last month - very quickly brought in to receive pan retinal laser treatment to both eyes over 4 treatments (2 to each eye) Not pleasant but definitely not the worst thing i've ever been thru. My issue with this is that although the treatment was explained to me, there's been nowhere/noone for me to go to to talk over the emotional trauma all this brings - only thing i was easily able to digest was, UNTREATED YOU'll VERY POSSIBLY BE BLIND WITHIN 5 YEARS (whit....i'm only 37, i've an 8 year old daughter, am i not going to see her grow-up, see her kids, etc, etc,....) Oh aye and also, best not to have any more kids - you've already got one why would you put yourself at risk like that.

Obviously after many tears and snotters i started doing some research and have since realised that the treatment i received was fairly aggressive and has been done at an early stage of retinopathy progression - whilst there are no guarantees i am looking at this as a kick-up-the-bum which to be honest i probably needed. Time to get my HbA1c under control - has always ran at around 9, although course i know i need to do that gradually otherwise i could escalate the situation! Oh the irony!!

What i'd love to know from all you guys is has anyone tried all the alternatives i've been reading about i.e. thiamine; benfotiamine; pyridoxamine or pycongenol - or in fact has anyone tried anything else??

I just can't believe the lack of understanding from the eye care team, i mean i was just up for my routine eye tests only to be told to come back 3 days later for my first lot of laser treatment. They're all lovely people who when i asked did sit me down and explain the facts but noone was able to empathise with my absolute terror at what this means for the future of my vision...........

Anyone out there been or going thru anything similar............ :shock:

 

[Synonym]

I haven’t gone through this myself but have got much sympathy for your situation and am sending many hugs.

You say that your BG levels are running higher than you would like so what /how are you eating and how often are you testing? Do you know what different foods are doing to your BG levels? It is doable to get your levels down and there are many good people on here who will help you if you can give us some information.

Sometimes I think that some of the medical people don’t have empathy or else have a defence mechanism in place to protect themselves against all the angst there is around and unfortunately you didn’t find anyone with empathy on that day. :cry:

Hopefully there will be someone along soon with the experience to offer advice on our situation.

 

[Ardbeg]

Hi ixlpixi,

I'm detecting a hint of Scots in your writing style. :wink:

I've just started taking Benfotiamine and my super acai 1200 pills have literally just arrived this morning so too early to report back on their success as yet.

Prior to my T2 diagnosis at the start of this year I had previously been diagnosed with iritus, which is essentially arthritus of the eye. Left untreated it can also lead to blindness. I have just received a letter from the eye specialist doctor asking me to call and make a follow up appointment. As yet, he doesn't know I'm diabetic and therefore I'm slightly apprehensive of my next consultation with him for similar reasons to yourself.

Regards laser treatment, I would have loved that but sadly, due to the iritus, they said I cannot have it. My "good" eye is very short sighted (so laser treatment would have been ideal) and ironically, the other eye where my sight is almost perfect is the one that gets the iritus flare ups from time to time.

I know it's a bit of a postcode lottery, but I have to say I have no complaints with the NHS care in Cleveland/Teesside. Over the years our whole family have had various health scares, some very serious, and the treatment has always been first class.

 

[kegstore]

iklpixi

Laser treatment is no fun, I've had about 6,000 hits in each eye for similar stage retinopathy, including the scatter-gun method. But I'm pleased to say that after a few scary years I finally have stable retinas with no bleeds now for nearly 3 years - result! I have no loss of vision at all, but there are a few things worth remembering:

Laser is NOT a cure, it's shoring up the damage already done, which at the moment can't be reversed although there is some interesting research into endothelial cell repair.

Once you have some degree of retinopathy, blood pressure control is as important as - if not more than - blood sugar control in preventing further damage. This will also benefit other microvascular systems in your body, such as kidneys.

In my experience, eyes take much longer to "settle down" than other body systems, which can be frustrating if your control is good and yet you're still getting bleeds, or having more laser. Stick with it though, they should eventually snap into line!

The only supplement I take is 500mg of vitamin C every day, there is some evidence of the benefits to microvascular condition and repair in doing this, and I haven't had a cold since starting either! I'm thinking seriously about starting with benfotiamine though.

I can't change what I did in the past, but the future's not set so I concentrate on making sure I do what I can to be able to continue to see as well as I do today.

 

[hanadr]

iklpixi
As I'm sure you know, the best treatment for retinopathy is GOOD bg control.
What numbers are you getting?
What do you eat?
I know it can be difficult for T1, but the lower you can hold your Bg the better. As you are so young, your blood pressure probably isn't too bad.
It's good you have a child to motivate you to keep your care as good as possible.
Hana

 

[jopar]

To put some perspective on this, less than 5% of diabetics suffer server impairment of vision... Yes no-one wants to be in that 5% club The low figure is generally down to what can now be done to maintain working vision in the diabetic. And with screening for diabetics I should imagine that this figure might even become lower as problems are picked up and treated a lot earlier

Maintaining good control of your diabetes is the best way forward, as it's far from proven that supplements are as effective as the sellers say they are..

But to give you some notion to what can be done, 11 years ago, my husband (T1) suffered a very nasty hemorrage in one eye, this several years before would have left him blind in that eye but they operated on it, removing the blood and reactaching the retina, he did lose some side vision but nothing that would stop him from driving, if he did drive.. since op he had one lot of laser treament not long after, but no more trouble with it since apart from having the cataract replaced last year, he did have a blip with his other eye a couple of years later but within the last 6 years both eyes have been stable and no treatment necessary ..

 

[iklpixi]

Thank you so much jopar,

As you've obviously picked-up on perspective is what i'm desperately needing right now :?

So far i've spent most of my time imagining the worst :cry: responses from the eye care team have been so vague (obviously not wanting to raise my hopes) and that's just adding to my anxiety. Stories like your husband's are what i need right now, it's not that i'm only looking for positives, just the reality of other's experiences (good or bad)

The uncertainty has made me paranoid to the extreme and i'm afraid to say i've been basically feeling sorry for myself over the last month or so

Time to act upon what i can do & you're right that is definitely goni involve much better control of my diabetes - although think i will also try the supplement approach (if i can afford it that is!)

cheeri

 

[iklpixi]

Hi hana,

Good control is what i'm now attempting, though have read that if you change dramatically too quickly then the retinopathy can get worse even quicker. To be honest i've paid no attention to what i eat and numbers range so dramatically i'm embarassed to even say the readings i get

Yes blood pressure is fine, cholesterol levels etc are also fine so it's really diet and bg numbers i need to be working on. The irony is that i recently contacted a dietician to ask about carb-counting to begin to get things sorted. Unfortunately she's not based in my home town and so is not regularly here, however i'm going to have to make this work for me and get a sense of control back in my life rather than diabetes controlling me....


Thanks for your response
cheeri for now

 

[phoenix]

Hi iklpixi,
Picking up on your mention of carb counting. If you can't get on a course near home there is a free online course from Bournemouth hospital.
http://www.bdec-e-learning.com/

 

[iklpixi]

Cheers phoenix, i'll have a look

 

[noblehead]

iklpixi,

There's no point in me telling you not to worry, cause worry you will. I know this from experience, about 10 years back I had a routine eye check at diabetes clinic, and they found I had diabetic retinopathy. Over the years, until 18 months back I have had laser treatment on both eyes, lost count how many times, but mainly in my left, and 5 years back I had a severe bleed in my left eye. After waiting 6 months to see if the hemorrhage cleared, as it didn't I had a 4 hour vitrectomy operation to remove the vitreous jelly from my eye. After 3 months I developed a cataract in this eye and had small op to replace the lens of my eye. I had a small showing in my right eye again 18 months back, had laser and thankfully things have settled down since.

Now, I know why I developed retinopathy in my eyes, in my early years of diabetes I would often have hba1c's of around 10, and I believe that due to my neglect of my condition, the retinopathy was the price I paid. Despite quite intensive laser treatment and vitrectomy operation, I still have good vision, I wear glasses for driving (short sighted) but can read well and watch tv with no problems. My consultant is amazed that my eyes have recovered so well despite the work that has been done on them.

Therefore, having some experience of diabetic retinopathy, I can tell you what I know and have been told about preventing and limiting further damage. As the others have said, it is paramount that you keep good control of your diabetes, and aim for a hba1c of below 7 if possible. Do this gradually, as a sudden drop can result in unstabilizing the blood vessels in the eyes. Blood pressure, I know that you stated it is fine, but mine was too, but my consultant at the eye clinic thinks that blood pressure control is just as important as good glucose control in diabetics, therefore he wrote to my gp and suggested that I take a small dose of meds to lower bp, as he thinks the lower the bp, the less pressure on the eyes and other vital organs. So, for the last few years I take 10mg of ramipril, but like Kegstore, take a vit c tablet and take a supplement called Bilberry plus, which I have read is beneficial to eye health (google for more info). And last but not least cholesterol, again the lower the better, below 4 is ideal.

As I said, you'll worry just the same, but as you have only developed diabetic retinopathy, it is only in the early stage, and the fact that you have accepted that you need to tighten things up, it has been a wake up call, following the good advice from other members, hopefully it could mean you may never have to experience this again, who knows its all in your hands. Below I have posted a link to a excellent site that is dedicated to the subject of diabetic retinopathy, anything you want to know you will find on this site.

http://medweb.bham.ac.uk/easdec/Informa ... e%20retina?

Good luck!

Nigel

 

[Bluenosesol]

Iklpixi,

If you wish to take Benfotiamine, (I take it for peripheral neuropathy and delighted with progress),
I buy mine from here

Cheapest I could find and no issues with ordering from the USA.

Regards Steve.

Steve.
Please do not post any links to that website again. It is not an Approved website on this Forum.

cugila
Forum Moderator

 

[noblehead]

Kegstore and Bluenosesol,

I'd be interested to know a little more about Benfotiamine from you both, I don't know much about it except what I have read in the past hour. Have you seen a improvement since taking this supplement, and what do your consultants think?

I know when I ask about vit supplements from my consultant, he didn't know if they were helpful or not, said more research needed to be done. This didn't stop me from taking bilberry plus, and I like to think it has been helpful in the last 12 months. Please let me know what your views are, either on this thread or by pm.

Many thanks

Nigel

 

[Ardbeg]

I'll second Nigel's request.

I've only started taking them a few days ago so too early for me to give feedback.

I also started the acai 1200 capsules today as well.

It may just be coincidence, but I feel better today than I have felt in a VERY long time. 8)

 

[MaryChristine]

Hi ixlpixi,


Regards laser treatment, I would have loved that but sadly, due to the iritus, they said I cannot have it. My "good" eye is very short sighted (so laser treatment would have been ideal) and ironically, the other eye where my sight is almost perfect is the one that gets the iritus flare ups from time to time.

.

As far as I know (and I am sure someone will correct me if I'm wrong :wink: ), laser treatment for retinopathy is not the same as laser treatment for long/short-sightedness.

For retinopathy the aim is to seal the leaking blood vessels in the retina (the light-sentitive layer at the back of the eye).

For long/short-sightedness, the aim is to alter the shape of the lens in the eye so that it focuses light rays correctly on the retina.

So, unfortunately, laser treatment for retinopathy will not cure long/short-sightedness.

Apologies if I have accidentally posted this twice!

Best wishes

MaryChristine

 

[ShyGirl]

 

[lilibet]

I hear ye Shy Girl!

Its my diabetic deal breaker, that and DKA (for some strange reason...). The eyes are so sensitive that they seem to be the first to 'go' even if control is good.

In saying that, its that fear which keeps me from saying STUFF IT and just eating what I like. It would be so easy (esp) on insulin to think/believe what you are told by Medics that eat it and cover it. Some choose to do it, some dont and though its good to have a treat now and again, I certainly dont make a habit of it.

So good luck to you both. HOpe things work out ok

 

[goji]

Hi ixlpixi

Sorry to hear about your diagnosis. It is a horrible thing to have to deal with.

I was told I had some background retinopathy but nothing that needed to be lasered. I have recently started benfotiamine and pyconogenol - I'm hoping these will help as my Hba1cs are already quite good (5.9 and 6.1) and my BP is not high.

I am having a follow-up appointment in 6 months time, so I will hopefully see no progression or maybe even some improvements from taking the supplements.

I read that pyconogenol is helpful in the earlier stages of diabetic retinopathy.
http://www.ncbi.nlm.nih.gov/pubmed/19916788

I think the only studies done on Benfotiamine and retinopathy were in rats so I don't know how applicable rat science is to human physiology.

It's much much cheaper to buy supplements from the states.

 

[Jmaxwell]

Afternoon Guys,

My Partner had always had great control and Hba1c's always just right but when she became pregnant she was hit with very aggressive retinopathy, apparently brought on by the changes in her body (but to be honest they had no Idea)

She was scared half to death that she would never see her son (she's always been a worrier).

I found it really hard myself as we realy didnt seem to get alot of information from the medical team and I had to try and to provide her with answers to the questions she had (as she only ever heard - blind in the appointments and couldnt move beyond that).

She went throuh laser treatment and found it really difficult as her eyes used to spasm so had injections directly into her eye to prevent this... As bad as it all sounds it was soon over and after about 6 months of treatment it had seemed to all calm down. It was all well worth while and we now have a beautiful little boy.

One thing to bear in mind is that my partner lost her driving licence due to a reduction in her vision following the laser... Although this does make the streets of chester a far safer place to be.

Best of luck with your treatment.. sure everything will come good.


Her

 

[waveyupnorth]

I could have written the original post myself - pretty much word for word. Had a similar experience, by more coinciding with lack of information from the healthcare professionals at my local hospital. Result in me turning in to very "angry man" - not good for BP. Feel much better after reading the post on this topic - now feel like I'm not going to need that Golden Labrador just now.

I'm annoyed at the hospital like you wouldn't believe. They just hit you with these things and leaving you with all the facts.

So much so, I'm seeking other healthcare professionals to assist in my treatment. I have doubts as to whether my current healthcare providers really are looking after my best hinterest.

Hope every has vision for ever. Take it easy.