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Medical Team - Care (or lack thereof)

Fearless36

Well-Known Member
Messages
112
I'm going through a hard time at the moment with my diabetes care. My sugars are up and down all the time. I did a DAFNE course and it was good but my sugars didn't come into balance during the course and I was told repeatedly it would some time after. I used to cook a lot of my own meals so had to stop that as the carb counting was so difficult to do. I switched to a lot of ready meals with vegetables as the carb count was easier to deduce. Then my team changed my ratio, and I got all muddled and confused.

I spoke to my GP, and told them my concerns, and she actually agreed with me. So I switched to a new hospital for my diabetes care. However the new hospital is being problematic. I know Covid 19 has thrown a spanner in the works for everyone, and I am not being unrealistic with what they can do. However the diabetes nurse team are just not helping me. I have gone to them repeatedly with issues about my bloods being up and down, and they keep reassuring me tht I simply need to redo a DAFNE course next year when they are up and running. However, its just not working now and I really dont know what to do. Every suggestion I have made to them, they seem to reluctantly agree with and then don't follow up.

Recently I havent' been feeling 100% and not sure if its a bug or what, but my sugars are more up and down than normal and I telephoned them 3 times last week. They are yet to return my call. I had a telephone appointment with the nurses on Thursday morning (which was organised prior to these issues) and they telephoned in the afternoon (when I was at work).

I feel a bit like I'm fighting a losing battle and don't know whatg is the best thing to do. The hospital isn't giving me any proper help with the care of my diabetes and I'm worried if things remain the way they are I'm going to end up with complications. My GP is friendly and I could raise it with them, but I'm reluctant to as I don't want to end up worse off again, yet if I do nothing I am going to end up worse off. I used to have perfectly controlled diabetes and so the new regime I'm really struggling with and its having an impact on my mental and physical well being that I just don't know what to do or who to turn to. I did telephone Diabetes UK to see if they could offer any advice and support and they weren't able to offer any suggestions at all. My eyesight is going now, and I'm struggling to read and my kidneys are also in trouble. My former diabetes care doctor told me not to worry about my kidneys and that they would go back to normal after balance resumed. However balance doesn't look like its going to happen any time soon.

I just dont knwo what to do and am feeling more and more desperate. I would love any suggestions as all. I suggested one time ot the nurses that I did a food diary and blood sugar diary, as figured that would help them identify where I wss going wrong, and they kind of shrugged it off saying I could do it if I wanted to but it would mean they would have to get a doctor to review it. I am just at a loss and need any help.
 
It would help to know if you are type 1 or type 2, you might list it in your profile? ? And what you are taking, it sounds like you might be on insulin?
 
Sorry yes a Type 1 diabetic, on Toujeo and a fast acting insulin I can't recall. Been diabetic since 4 (so some 30 plus years now) and switched onto the fast/slow acting combo about 3 years ago and just has got so unbalanced. The DAFNE course was supposed to bring me back into balance, but it just didn't in the whole 5 days I was there and has continued to remain unbalanced despite all efforts I'm trying.
 
Okay, it sounds a lot like you need to focus on the basics. We can't really get past the fact we have to carb count as a type 1.

There are some aps that can help, Someone can probably come along and let you know what they use in the UK. Hopefully they can tell you the easiest to use etc..........

So prepackaged food works I guess, except it sounds like means a lot of food that's not probably the greatest,
Making your food is better for you but you have to do what works for you. Maybe start with a few basic meals you make yourself?

Keep a list of what you put in it and the food/carbs you put into it and what a serving size for you is. Keep it to simple foods at the beginning. That way you don't have to try to keep calculating it. Example a bag of frozen veggies is 16 carbs, a package of seitan is 10 carbs, some lemon, soy sauce 0 carbs.This just equals 26 carbs, I eat half the amount so I am eating 13 carbs. Keep a recipe card with that information so you can refer to it each time. You can focus on a couple of favorite meals at first.

Then you can also write down the insulin you take and what your response was. That way you can keep track on if your ratios are right and give better information to your diabetic team

But whether you make your meals or not, I think it's probably a good idea to start keeping a log of
1) what you are eating
2) how many carbs, fats are in the meal
3) What your blood sugars where before you ate
4) And what your blood sugars are 3 hours after you eat.
5) What your morning fasting level is.

People at your diabetic team can help you better if they know more information and exact information. If you just tell them your numbers are all over they really can't give an informed response back. Supply the information and let the doctor look at it.

If the "new" regime isn't working you have to talk to your GP about it. This is your health so you need to try to solve what is going wrong.
 
Thanks, thats what I actually have done already, provided them a list of what I call a food diary (foods I ate, blood sugar readings, Carb count and insulin dosage) but they couldn't be less interested. I'm not against carb counting, I also have carbs and cals and a scales so I can weight things, but I found that when I was making my own meals, it was difficult to get the carb ratios. So for example, if I did short grain brown rice, with some vegetables and cheese - my bowl isn't the same as in carbs and cals, and when I weighed it I got muddled trying to work out how to work out the carb count. Then depending on what vegetables I used and how many (carrots, onions, sweet corn, peas) it just got so confusing. I am willing to do anything that works. At the moment they are trying to encourage me to retake DAFNE. The first time \I did it, my levels didn't balance at all during the 5 days, and I hypo'd twice. Just seems like there is no hope at all for ever getting back good control for me.
 
I use CalorieKing I am a vegan so I make most of my food. I do not do exact weights etc, I just get close.

So I would look up a large carrot (7), look up a sweet potato (20), look on the package of tofu (5), The green leafy stuff I don't count and a cup of non starchy veggies for me is about 5 carbs. So the tomato, cucumber, mushrooms, broccoli in the cup of this on my salad is 5 carbs. Dressing in my case 0 carbs.equals (32) carbs, in my case I will eat half which equals 16 carbs

But look it up once, the carrots, onions, sweet corn, peas, add it all together and divide it, if you eat half, by half, if you eat a third divide it by a third. Plus for commonly used foods you start to memorize the carb counts for them.

Keep the "recipe" in your diary so you only have to add it up once. and if you make a substitution say the carrots for zucchini you can just make a note at the bottom at the bottom of the page less 7 carbs for the carrot add 3 carbs for the zucchini type of thing.

I can't give advice on your ratios of insulin, we're not allowed, but I suggest you ask to be taught how to learn to either decide that or what information your team needs to judge what you should be taking.

What did you do before Daphne that worked so well? You might need to revert to that.
 
Marie 2 said:
5) What your morning fasting level is.
Click to expand...
and what your bedtime reading is, as if those two readings are wildly different you may need to modify your basal.
 
Hi there, what levels are you getting and what was your latest hba1c? It must be very frustrating for you but I have found that although my diabetes team are friendly & helpful enough, they can't really do a fat lot about fluctuating levels and basically you're on your own once they have explained the basics. I normally do not advocate a very low carb diet but I wonder whether you should think about that and start from scratch if you will. You would need to keep a careful eye on it all and adjust your insulin accordingly but it's worth a try. Of course it's not just about what happens when we eat food, it's about the body responding to its basal insulin as well. Can you give us a typical days example of your regime?, we may be able to spot something amiss. x
 
Fearless 36

Carb counting yes can be time consuming with your own cooked meals especially when feeding others but what I do it decide a set number of g for the main carb (pasta., potatoes, rice) - I always have 100g so work out what cooked 100g carb is, then I weigh this out but I use the same serving spoon and the same plate fo every meal. After a time you sort of get used to looking at what 100g of pasta, potatoes, rice looks like on the spoon and on your plate so you don't always have to get you scales out. However I do check again just in case you start to sneek a few more g's on to your plate.
 
Hi. I would try to keep things simple. You don't need to do DAFNE to achieve a reasonable balance and often NHS staff with the best of intentions are not the best source of advice unless you are one of the lucky ones. My DNs have been and are great but my diabetes GPs were useless; also I wouldn't rely too much on DUK (sorry!). First get your Basal right and I assume you know how to do that? You shouldn't need to weigh any food; many of us don't although it doesn't do any harm. I'm surprised you don't know what your Bolus insulin is? Your diabetes team can only start you on the Bolus ratio (typically 10:1) but after that only you can determine what it should be at each meal based on experience; there are no rules after the 10:1 start point. I don't know what your Bolus insulin is but if it's an unusual one then perhaps changing to NovoRapid (very common) might help; it may be that's what you already have. So, get back to basics and don't rely too much on 'expert' guidance as much of the time you have to be that expert.
 
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