Answers to questions posted in the Diabetes UK forum

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Q1. What gets you down most about having diabetes?

Nothing really gets me down about having diabetes.  It was a wake up call to better health through eating healthy and exercise.  Without being diagnosed with diabetes I probably would have continued the same destructive path of eating unhealty, not exercising and drinking to much alcohol.

The negative effects that stress has on my diabetes.  Just when my life is hardest to deal with, my disease makes it even harder.

I have been T1 for over 27 years. I have gone thru many stages with my diabetes but at this point in my life (almost 50 years old) the deteriation of my body and the complications it has caused get me down the most. I have diabetic retinopathy and am legally blind.  I have kidney disease and have less than 25% kidney function. I have heart disease, high blood pressure and high cholesterol. Facing my mortality gets me down the most.

Watching everything I eat; counting carbs and maintaining portion control

Constantly having to think of what can/can't I eat or drink

That the dietary advice given by the government, Diabetes UK and the US ADA is designed to make both obesity and diabetes much worse. Also the fact that any scientist or medical professional who has the guts to say so gets shouted down as misguided or not understanding the problem.

That the dietary advice given by the government, Diabetes UK and the US ADA is designed to make both obesity and diabetes much worse. Also the fact that any scientist or medical professional who has the guts to say so gets shouted down as misguided or not understanding the problem.

Wading through the minefield of information so that I can help myself to prevent the worsening of diabetes.  Trying to establish what is accurate information.

Not knowing how much damage is occuring when BG rises

Constantly wondering what I can and cannot eat apart from the obvious, avoiding sugar where possible and fatty food whenever I plan meals for the family.The G.I. diet is good but confusing,things you think are good for you turn out not to be!!!

Not a lot

The fact that I cannot eat and drink what I please without having to think of my condition

Not getting any useful info from the GP or practice nurse, had to find my info off the internet

Ive been type 1 for 40 years and in good health my main worry would be the complications

Not a lot.  It's a fact of my life, what am I going to do about it?  Except control it as best I can, which is probably better than most.

The thought of complications- I have neuropathy and osteomyelitis in my foot. I may be looking at a medial ray amputation. Erectile dysfunction is a bummer too.

Taking tablets and feeling unwell

The lack of info from the Health sector.Isn't it time they listened to the seasoned diabetics?I've learned more from the diabetes forum than from health team.

I'm desperate for a night where I don't wake every hour desperate for a pee. Never being able to eat anything without calculating the insulin to compensate. Never having a day off from it. Not being able to go wild on a night out with mates.

Assumptions that when my "numbers" aren't perfect it is non-compliance on my part - rather it is the treatment that needs to be adjusted. I have type 1, 20+ eyars and my A1c is 5.6, a use an insulin pump and test 8+x a day

Not being able to eat what I like, when I like.  Knowing if I do not watch my blood sugars I will encounter problems later in life.

My doctors tight fisted prescriptions - he wont issue more than 150 test strips at a time which being self employed means I have to loose money more regularly to get repeat prescriptions

Having to think hard about the quantity of everything I eat, and how long it will be before I start to get eye/kidney etc etc trouble

Unpredictable sugar levels

Change of diet, no real sugar

I do not fit the symptoms

Q2. What could your doctor do that would best help you with your diet ?

Nothing my doctor could do here.  My diet is my choice and I'm intelligent enough to research the info on how to eat a healthy diet to keep my blood sugars down to healthy levels.

Educate me more on the ways that different types of foods are metabolized and how they will effect my blood sugar levels over time.

If my doctor was more educated about diet and could share that knowledge it would be helpful. I never feel I get good advise. A written diet with few suggestions does not help me.

He could work with me better in setting goals for a1c, weight, etc

As per The Cure on the diabetes.co.uk site, accept that what docs have been telling us so far has not been helpful rather the oppsoite, educate yourselves on transfats, good and bad fats and dont listen to pharmaceuticals pushing their drugs.
Thank you

Read the enormous volumes of research that has all totally discredited the "high carbohydrate/low protein/low fat" theory, so that any dietary recommendations can be made on provable facts, not popular (but discredited) theory.

 

Explain in greater detail how the body works in relation to diabetes.  Plus better information about low carbs and essential fatty oils.  Have time to listen to the theories brought up by people with diabetes i.e that taking cinnamon,hemp oil,flax oil,codliver oil is beneficial in lowering BG levels.

I do not get any diet advice from my Doctor therefore any would help

Maybe run a practice diabetic club where local people can get together and support each other.I know the local hospitals run groups, but they are not always convenient to get to. Also a comprehensive diet sheet/list of common foods which we can tuck into without worry!!

The UK GPs could take some time to understand the condition.  I have far more knowledge of diabetes than most GPs.  The dietitians could stop advocating a suicidal diet of 60% starchy carbs.  The Doctors should educate their patients as to how testing helps, how they can use it, how important it is, instead of unilaterally denying T2 diabetics any strips.  Ohhhh just blessed well WAKE UP!  Anyway I doubt you are a genuine MD

Be more involved and ask the relevant questions during check-ups

Have some form of handout, regarding monitoring BG levels before and after meals, to find which foods effect an individuals levels

I think there is plenty of information from my diabetic doctor and web sites like diabetes uk,  and a certain amount of trial and error finding out what different foods do to your blood glucose levels.

Stop sending people to the NHS dietitian who prescribes the high carb diet. It's suicide for diabetics!  Anyway no one takes any notice of us, no education no nothing.... GPs haven't a clue.  If you are cute and smart you'll controll it but with help from other diabetics online and not with your GPs practice help.  It's totally pathetic and PLEASE don't suggest supplements, drug company conspiracies or any other rubbish the best help has come from other diabetics in *sensible* forums, not those who weep on each other's shoulders!

Give me a GLP analogue (I am on insulin and type2). I wasn't impressed by my dietician's advice, but I am an orthopod (yes with osteomyelitis, ironic). I might try a DAFNE course.

Send me to a dietitian

Make sure test monitors were free to all not just those on medication.Without mine I would never have found out that certain foods raise my blood sugar.I also think that having to wait for a Hba1c every 3 months "blind" is a long and complicated way of trying to control your sugars.Diabetics need to be in control of their illness from day one not wait endless months to see if they are getting it right.Research into trans fat involvement would be good too,there does seem to be enough evidence to suggest that they are linked. There is a good booklet produced by   http://www.leicestershirediabetes.org.uk/documents/CarbohydrateBooklet2_4_4%20Portion%20List%20.pdf 
 I wish I had had this to start with,this is the sort of info we need .

Give a little more encouragement and actually talk about carb counting

Recognize that every one is different.  A "template" diet or plan isn't going to work for a wide range of people

Not a lot, but when I was prescribed metformin, he could have informed me my prescriptions would be free.

Give me more test strips!!!!!!!

Lean on the PCTs to lift the short sighted money driven ban on self testing for non insulin dependent diabetics. I had a letter from my GP before Christmas saying that they would only allow one tube of testing strips per year on prescription as medication is dictated by the HBa1C test. This gives me the impression that as far as the PCT is concerned, the only factor in good BG control is dispensed medication, and lifestyle plays very little part in it ! - (a N.I.C.E. dictat I assume). I'm overdue for a HBa1C test, but to be honest I have put it off because I am hopping mad about this. Due to this 'save now, pay later' policy, What will happen in reality is that I will just keep popping the pills in increasing doses (with the risk of side effects) and eating what I want and exercising when I get the urge until my HBa1C test comes back high and they will then put me onto insulin - at which time, the cost of my treatment will go through the roof, and will then be looking at all sorts of medical complications. Of course I'm not bitter at a system I pay handsomely for returning such a poor decision driven by 'bean counted' decisions as opposed to 'best practice' in the interests of most effective patient care.

Educate himself and learn about the disease

Tell me what I can eat

Don't send me to see another dietician