Diabetic maculopathy

[terrifiedofgoingblind]

Has anyone got an experience of being diagnosed with diabetic maculopathy?
I’ve been type 1 for 24 years and am generally well controlled except the fact I’ve piled the weight on since having a baby 18 months ago and have a real sweet tooth. My hba1c is generally very good but my sugars can be up and down.
I went for an eye test today as one of my eyes ha been blurrier and less focused for about a month (I wear glasses all the time) - had one of the extra scans and the optometrist detected a “medium size” macular bleed in my blurrier eye. They’re referred me to my local eye hospital so I should get an appointment soon.
I am trying not to panic so was hoping someone who has also experienced this might be able to set my mind at ease!!!

Hi there,

Please try not to panic! I know it feels very scary but honestly there are so many things they can do nowadays for diabetic eye issues. The most important thing is to make sure you go to all appointments.

Being honest, I would not wait for an appointment now I know there is an issue - I would go to your nearest eye hospital A & E and be prepared to sit and wait however long it takes until you see a retina specialist and know exactly what you are dealing with. I have done this before for a related eye problem. However it was before the pandemic so I don't know how things work now.

Depending on the size of the macular oedema, they might just go with a "watch and wait" approach, where they monitor you carefully, perhaps every month and then every two months. Or if it is larger and meets a threshold, they might advise treating now.

Sending hugs because I do know it can be so overwhelming and frightening.

Also, it's pretty common for pregnancy to throw up either new eye problems when you have diabetes, or accelerate any existing problem. It's really shit!

Is your blood pressure good and was it ok through pregnancy?

Thank you so much for your response that’s really helpful: I’ll look to take myself to the eye hospital soon to get myself checked out.
my blood pressure has always been on the low side but was normal and stable throughout pregnancy.
I get myself very stressed very easily, so I’m wondering (worrying!) if that has contributed to it all.

@fuckingcoldshowers this is terrible advice and the reason why A&E is clogged up with problems that are not accidents or emergencies. Retina specialists are not just sitting in an eye A&E waiting to treat you!
OP, your optician will have made an appropriate referral with the relevant clinical information which will be triaged and you will receive an appointment. If your vision suddenly becomes worse then by all means go to A&E but don't waste yours or the junior Drs who are not retinal specialists time by going there and waiting until someone does something. They will just send you home.

@Bemoreme21 you are clueless about retinopathy and macular oedema. The OP needs a retina specialist to assess the severity.

Opticians DO NOT have the training to do this assessment, and time is of the essence with retinopathy and dme.

Eyesight is extremely precious, and it is easier than you think to fall through the net.

As for this:

Retina specialists are not just sitting in an eye A&E waiting to treat you!

Actually, yes they are. If somebody has sight-threatening retinopathy or maculopathy, or something like a tear/ hole caused by the bleed or oedema pulling at the retina, they will begin treatment straight away with laser or anti VEGF injections. I reiterate - time is of the essence.

That's great that your blood pressure is on the low/ normal side! That gives a level of protection to the retina.

I know how stressful it all is, sending strength.

@fuckingcoldshowers actually optometrists do have the training to do the assessment and decide on an appropriate timescale of referral. If it was an A&E matter then they would send you to A&E with a letter.

The optometrist emails the retina specialist the referral who makes a decision on when the patient is seen. DME is not the same as a retinal tear which does need same day assessment.

Hope that helps!

You are wrong. Again. DME can cause a retinal tear if the fluid pulls at the retina. As can a major bleed from new weak vessels growing due to retinopathy. The fact that you don't know this speaks volumes.

No, optometrists should not be responsible for deciding the severity of the retinal issues. They are extremely complex.

The OP is having blurred vision, which is central macula involvement right on the bullseye. Because of location, this means it is absolutely not possible for an optometrist to judge and make the call whether it is:

a) a very tiny, threshold size oedema that may self resolve

OR

b) something larger that definitely meets NICE guidance for immediate treatment to maximise chances of best visual outcomes

Perhaps you are simply incredibly naive rather than malicious, I don't know.

However it is very unethical of you to try to dissuade the OP from getting her eyes assessed by an ophthalmologist who is the best person to judge what treatment or timescales give the best chance at preserving vision.

You are utterly clueless I'm afraid.