Why do I have to work it all out for myself?

[the_anticarb]

Bit of a rant really. After doing some extensive research on the subject I've discovered that high cholesterol is a risk factor for many diabetic complicatoins, including retinopathy which i am having some trouble with at the moment.

I have high ish cholesterol. Now that I've made a fuss, I've been put on a statin.

WHY DID NO ONE TELL ME TO GO ON A STATIN BEFORE?

I now have macula exudate on my good eye, apparantly this can be prevented with the use of statins and /or fibrates.

I have had proliferative retinopathy 18 months and only just realised/found out for myself that it's blood pressure AND cholesterol AND blood sugar, not just blood sugar, which causes this disease to progress. But no one in the diabetes centre or at my GPs has thought to look at anything apart from the blood sugar. Luckily, my blood pressure is not high, but things like exercise help to get it even lower, the lower the better as far as I'm concerned.

I've discovered the hard way that you have to be your own specialist, you are the only one with your interests truly at heart and unless you learn about what is happening you may miss out on treatments or medications.

 

[Unbeliever]

Ain't that the truth? I have had to be SO assertive to get as far as I have with my treatment. I am not really an assertive person - or wasn't but I hink my experience with diabees and then the retinopathy and macular oedema has changed me.

My Gp's and Practice Diabees nurse will not even comment or answer a comment of mine about my hospital treatment.
Their expressions when I mention it resemble that of a hunted and cornered aniimal.

Not that I ask their advice but I sometimes have to mention it . Strangely in spite of the usual stony silence the Nurse had no hesitaion in informinng me, incorrectly that pioglitazone was fine for my macular oedema in spite of my own reservaions even before I could check. She was wrong. Thank God for the internet. Otherwise I would be blind.

It is vital to be well informed. As you say noone has your interests at heart as much as you do .

 

[lucylocket61]

I am finding I can take nothing for granted. And must check everything. And then scour these threads in case there is something I didnt even know I should ask about.

It is scary that so much harm can be done through misinformation or absence of information, but no-one is accountable and the medical profession are becoming, for me, the enemy

 

[the_anticarb]

I am going to make an appointment with my GP next week and take in the evidence from the internet that says everyone with retinopathy should be put on a fibrate and a statin, and demand to be put on a fibrate! My GP is nice, but a bit nice-but-dim sometimes, after xmas I had labrynthitis (totally unrelated to diabetes) and I had to basically tell him I thought that was what I had as he didn't know, but I'd done some searching on the net. Then he was like 'Oh yes sounds like you have labrynthitis, here's some pills for it. Same thing happened when I had trigger finger.

I'm also not happy that my retinopathy was not taken seriously by the medical profession until very very recently, whilst I cannot say I was not told this was a complication of diabetes, and I know I am responsible for my diabetic control, all the time I had background retinopathy/pre prolif I just didn't think it was that serious as I was never referred to a consultant. If only someone had said 'hey this is getting worse, let's look at your hba1c, blood pressure and lipids as they all have an effect'.

But no, I was left to my own devices until it got picked up when my eyes got bad in pregnancy. I know the nhs is short of funds and only sees those patients who need treatment - but for me this was an indication that the eye problems were not serious. Even during my pregnancy when my right eye proliferated I was told not to worry as i was due to give birth soon - only now do I find out that the changes in pregnancy can continue for up to a year post partum.


I now consider myself my own specialist, and my job is to get the consultants to give me the treatment I believe I need.

 

[Unbeliever]

My experience has been that you only get sense when you see a consultant . Some say not even then bu I have not found that either with the diabetes or the retinopathy. trouble is there are so few of them .

A few minutes with a consultant is worth hours with lesser qualified people. I know my husband attended a hospital monthly for over a year and noone would'could dignose his problem. he had a hissy ft one day saw a consltant for 5 mins and got a diagnosis.

It is not always the case that the best hing is to see someone quickly and get immediate reatment. It is best o wait to get the right person and the correct treatment.