worried about blindness.

Hi mandapops
Some if whst ur describing is similar to me. I deffinutely see tjings smaller through my worse eye but i dont know if this has always been the case as before i had retinopathy i didnt tend to test my vision one eye at a time. Its the same with low blood sugar. My vision deffinitely changes i get alot of patches that dont seem to be there when im not hypo but again this may have always been the case but im so oaranoid and hyperaware if everything to do with my sight that i may just be noticing it more niw.
I am sorry if it is stories like mine thst have frightened you. I kniw when i was diagnised wirh it i read and read and read some more on here and probably every other website about the condition. Yes it scared the hell out if me but in some eays helped me ask the rught questions when i neefef to.
I ring the eye unit direct when i have a problem and they have always been bery helpful. Express your concerns to them and hopefully they will be able to sort something. I used to feel i was a pain and didnt want to waste their time but as the doctor said when i saw hi " if you are worried get it checked out. If it turns out to be nothing then great but if it needs treatment then we can give it to you sooner rather than later"
The chances are there is nithing to wirry about but toput your mind at rest its best to get it checked. Is your hospital good with care?

I kniw nothing any of us say will take away the fear you are feeling right niw but remember in most cases laser sorts it out. If it doesnt there are many options which i kniw sound really scary but but are availanle of needed. befote my vitrectomy i was petrefied but it wasnt half as bad as i was expecting.

I wish you all the best.
Take care leb

Hi Mandy

Before I had the laser, a few years ago, I noticed a flickering effect in my vision particularly first thing in the morning or when I went from a dark room to a light room. The doctor reckoned it was because the blood supply to my eyes was poor (due to the retinopathy) and so it took a while for my vision to get 'switched on' properly when I went into the light from the dark. This really frightened me at the time but I don't get it now, so I guess the lasering has worked as it takes out peripheral retinal cells to reduce the eye's need for oxygen.

Is that anything like what you are experiencing? It is so hard with vision as no one knows exactly what someone else can see/experinece.

I know all too well how scary retinopathy can be, at my worst when I had the bleed I feared for my psychological health as well as my physical but just remember that blindness is quite rare in this country where we do have an NHS I know they are not perfect but compared to countries with no NHS it is wonderful in comparison.

If you are getting very worried/depressed you could contact the RNIB emotional support line, I have done this and am currently awaiting counselling, it is for anyone with vision problems /potential vision problems you don't have to actually have sight loss to contact them. It's a free telephone counselling service it may reallly help you to manage your fears.

as for having a family, whilst untreated retinopathy can worsen during pregnancy if it is treated and stable it is unlikely to worsen, look at me I've had one eye lasered to ***** and an operation, and the other eye lasered too and they've still said I can go ahead with TTC so so long as it is treated you will be ok. Others on here I think Sugar2 had a lot of laser and went on to have two kids with no problems.

You have age on your side so you have plenty of time to get the retinopaty treated and stabilised before you go on to have a family if that is what you choose to do. Being pregnant and diabetic is hard but do-able if you know what I mean, you just have to test all the time but you know its only for a few months and the reward at the end is all worth it.

Feel free to pm me if you want any more info about pregnancy or retinopathy, having been through it all I'd be only too glad to help someone else.

Just remember there is a light at the end of the tunnel, I have only just seen that light after seven months of hell with it all, but it does get better and the treatments do work eventually so long as your sugars are controlled.

So glad ur feeling a bit better about things this morning.
I would get an sppointment just to put your mind at rest like the doc said to me better safe than sirry.
Let us know what they say.

Best wishes
Leb x

manda pops said:

How would i contact my clinic would i go to my gp for a referral or contact diabetes nurse?

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Hi Amanda,

I found the quickest route was to ring the Ophthalmologists secretary and tell them your concerns and that you wish to be seen asap, they keep a diary of their appointment schedule and will try and fit you in at the earliest possible date.

Hi again
Ive been there too many times with rhe rausing sugar in the moening and fir no reason i could see. It never seemef to follow any pattern but after goinf on rhe DAFNE course it really helped get my head around things. Thungs cganged so much sincw i wss duagnised 22 tears ago and id never really cganged the way i treated my diabetes. Lukw yo i would nit reallt test that often and kinda jyst guess unsulin dose. I was put on a pump in august and must say its amazing nut i needed the DAFNE education befire. Do you counr carbs and guve dise acvording to ratios whuch you and your duabetic team have set you??
I cant recvommend it enough. Im 33 now and up untill the beginning of thus year alwsys put my duabetes to the back of my mind but fir ibvious reasons my attitude has changed. i wiul syggest getting in touch with yiur DSN and see if they can help. I alwats keep in touch with mine even if uts jyst by email so she can asdure me wgat im doing us rught.
Perhaos doing 2hourly tests thru the night would indicate if you high mirning reading is a result of a rebound because if a hypo during the night
Good luck
Leb x

So true, i think thetes so many factors that alter our blood sugars, i.e. Stress, exercise, hirmones, types of food, illnedd, that it impossible to get it right all of the time. I can do exactly the same thing for 2 days eat exactly the same foods and still have comoletely different rezults. It has deffinitely improved since pumping tho, have u considered a pump as an option fir you?
I must say it took forever to get it ( my youngest daughter was 3 or 4 when it was first mentioned.shes nearly 11 now) but it gives alot more flexability.

Stick with it and im sure tjings will settle soon x

manda pops said:

thank you guys i have phoned them and the she said she will try and get back to be soon she has to speek to the doctor about my concerns.

I am trying to control my sugars but its hard as im kind of starting at the begining as a was out of control for so so long. I am currently taking levemir but split dose then novorapid at meal times. last night i went to bed and my sugar was 8 then i got up today got ready didnt have breakfast and took my levemir at lunch my sugar was 15 an i really dont know why and im unsure as to change my night time dose or my morning but finding im having few hypos at night. some days my sugar is stable and other days for no reason it goes way off and is hi its really confusing and frustratiing i think i may need to have a few days of not eating in order to get my background right, whats peoples views on this and how much units are you guys on of levimir if your on that.

cheers x

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Good news the secretary is getting back to you :thumbup:

Should I miss breakfast then I'm sure to get a liver-dump and see my bg climb as high as 5mmol from my waking level, to overcome this I eat breakfast every morning and try to eat within 15 minutes of waking.

Let's know how you get on with the Ophthalmology clinic.

Hi again
The pump is funded by the primary care trust. Different areas have different rules i think as to who they will fund. I am on a 3 month trial and had to sign a contract when i started to agree thst uf i didnt meet the criteria then i would go back to injections. The thing i am aiming for is less than 4 hypos a week, hba1c of less than 7 and to ensure i keep in regular contact with dsn. My dsn sees ni reason why they wont continue to fund my pump so im hoping this stayd the same. If your intetested speak to your dsn. Not all ateas hve specialist nurses that are pump trained but its defginitely worth askung. I would ask about DAFNE course too as this kinda gives you the basics needed for pumping too.
I too used to jymp from normal to high readings on a daily basis then would over correct and end up hypo then overtrest the hypo and end up high. I used to bounce around all over the place and i must say that very rarely happens niw. I think DAFNE really helped me get to grips with the whole thung.
Keeping my fingers crossed you gdt a call back on monday
Try snd have a good weekend x