It’s no surprise!

[mytype1.life]

I was reflecting on my potential HbA1c progress made since joining the forum and getting a Libre (fingers crossed for December!) and began to question why I’d been getting it wrong for so many years. By wrong I mean trying so so hard to be healthy but not seeing the HbA1c improvement.
Then the penny dropped - a combination of poor consultancy and advice. Here are a few images of diet advice for people with diabetes from my local hospital which was my mantra until the past few months. I’m just shocked to see it as now I know if I ate what it describes I’d be seeing those daily spikes again.
At my last appointment my consultant asked me what was going on between my waking BS and my breakfast BS. At the time I didn’t have a clue and was hoping she (as the health professional) would have some advice. I know now of course this is the dawn phenomenon which I’m working on correcting myself!
Rant over - thank you all for your brilliant advice and support!



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[phdiabetic]

Good job. I'm sure you will be better in December, and if not, it's the effort that counts, so I'm sure you will make progress over time as you learn more and more.

This diet advice is really annoying me! Pasta? Porridge? Only one portion of fruit at a time?? And most bizarrely, fruit juice as a choice instead of as a hypo treatment!! I also don't like the way they split up the breakfast into breakfast and a morning snack. People will still be hungry if they don't eat as much as before! How about adding in some lower carb foods to help with hunger, or changing the breakfast to something with less carbs so you can eat more of it!

 

[mytype1.life]

Thank you

It’s just crazy isn’t it! I’ve been diabetic far too long and honestly wish I’d known what I do years ago. That meal plan - porridge, Banana, bread, crisps , rice all make me spike!

 

[JoeT1]

The Libre is certainly helping me. I know now that I spike within an hour of having porride or sourdough bread now, I can see that I will still be dropping up to 6 hours after my breakfast. That's only after using the Libre for 4 weeks. I can now try and make adjustments to bolus sooner for porridge or bread, or I can cut them out, either way, I shouldn't be seeing those severe spikes. Something I wouldn't be able to work out finger pricking a couple of times between meals.

You are doing great, and you offer great advice as well, especially to me in some things I was nervous about. We are around the same age, have the same HBA1C goals, only yours is in December, mine in January...you'll smash it. Good luck.

 

[EllsKBells]

Here's hoping December brings a better Hba1c for you!

That 'advice' is truly horrific - there is nothing on there that I would personally choose to eat, because it isn't worth it. And, they are either assuming that you are taking 6 injections of quick acting a day, or that the person is on too much basal, to 'mop up' the snacks. It's really frightening that they are giving that to people.

 

[leahkian]

The advice that you are given can change from consultant to consultant which is why you never get the same response. They try to send you on different courses about how much you should eat and how much insulin to take, there is one massive floor in that. It is that there are no two diabetics the same and the research that they have done may have been done on 10000 diabetics then they find the average and use it as if we are all the same. I stopped going to these courses as they would show you a jkt pot and ask how much insulin you should take, most people said then same answer but i would tell them that it would not work for me and they said it would, we even did a test on it and i said taking that much insulin for that many carbs would lead to me having a hypo. Guess what not 2 hours latter my BS was 2.7 and they looked at me and said that should not happen but i tried to tell them that we are all different. It got that bad that i changed my care from Durham to Newcastle because at Durham they could not get my BS right with a pump after 6 months, so i went to Newcastle and they got it sorted in 3 weeks. The main thing was the consultant listened to me and then we would plan together as he said i see about 25 people in clinic and not one of you are the same.

 

[Jo_the_boat]

You're young and have a long life ahead so good for you trying to take control of your future.
Keep smiling.

 

[DavidGrahamJones]

Then the penny dropped - a combination of poor consultancy and advice.

Personally I wouldn't blame the consultant, but the system that they work within and the fact that if they recommend something outside their guidelines and you end up ill and in hospital or worse, whose fault is it? The consultant for not following guidelines.

Here are a few images of diet advice for people with diabetes from my local hospital which was my mantra until the past few months.

As a type II who uses diet to help control my BG, that sort of dietary advice is not going to work. It does seem to follow the advice I was given 20 years ago which was to eat smaller meals but more often and to continue eating the carbs. I don't know how that affects a type I, I have a very close friend who is type I since I met him 35 years ago. He eats what he wants and takes the insulin required. His HbA1c is always perfect. He's an industrial chemist so is well looked after by his company, rather than the NHS. I think that possibly just says you have to do what works for you, no matter how much and what advice you get, do what's best for you.

the dawn phenomenon which I’m working on correcting myself!

If you find something that works, please let me know. The only time my BG stayed level throughout the night and past breakfast was when I was on a very low calorie diet.

Rant over

I hope you don't mind me saying this but tiredoftrying says a lot, forgive me for just saying "wait till your 65". A long way off for you fortunately. At least now you are armed with some useful tools for making this ****** disease a bit easier to handle, and the confidence to question the so called experts because now you know differently. That took me 16 years and the side effects of things like Metformin and Atorvastatin have had a really adverse effect on my life. I'm told 65 is now the new "middle age", bring it on, I've just got to get back on the skis and sail the Atlantic. LOL One day.

 

[Jo_the_boat]

If you find something that works, please let me know. The only time my BG stayed level throughout the night and past breakfast was when I was on a very low calorie diet.
I'm told 65 is now the new "middle age", bring it on, I've just got to get back on the skis and sail the Atlantic. LOL One day.

Low calorie or carb?
Happy sailing when the time comes! (our boating was inland - wife hates water!)

 

[DavidGrahamJones]

Low calorie or carb?

I've been low carb but not high fat (it quite literally goes straight through me, I have the test result to show that) for 4 years. That was fine until my HbA1c last Christmas when something went wrong, basically glucose being made from protein and what little fat I did eat. The only thing that really worked quite well was the Newcastle Diet, although I didn't follow the regime to the letter, I was usually eating less than 800 calories per day by just removing sources of protein.

The result was a very pleasing flat line BG between 5 and 7 for days at a time, no increases any time of night or day which is previously what had been happening. I should mention that this information was collected thanks to the FreeStyle Libre, a game changer.

I've read that the liver is using surrounding fat and from within the liver itself to produce glucose. I need to go back to my research to check the exact details. When talking about fat around any organ we have to remember that skinny people are not exempt, their organs can have as much fat around them as an obese person. On the TV I saw scans of three brothers aged 14 - 17, one very obese and the other two average, when looking at internal fat, you wouldn't know the difference.

 

[phdiabetic]

Here's hoping December brings a better Hba1c for you!

That 'advice' is truly horrific - there is nothing on there that I would personally choose to eat, because it isn't worth it. And, they are either assuming that you are taking 6 injections of quick acting a day, or that the person is on too much basal, to 'mop up' the snacks. It's really frightening that they are giving that to people.

I used to do the mopping up thing when I was on MDI, it's much better on a pump! Before bed each night I would eat a bowl of bran cereal, I remember having to force myself to finish the bowl some nights. I could safely eat most of the foods on that list, but the problem is that I would never eat more than 30g or so of any one of the foods at a time, so the portion size would be so small that it's not worth it. I actually do eat potato crisps very often, the small packs (9g carbs, 0.5g sat fat) are pretty good. Fruit and yoghurt are also very good choices, I can eat them with no spikes and there's a decent amount of food for 15g carbs (as opposed to pasta for example...).

 

[Art Of Flowers]

If you have a Libre you can see what diet works best for you and what can reduce the risks of glucose spikes and reduce the numbers of hypers and hypos.

 

[ringi]

Remember everyone who is active on this forum gets to see more detailed glucose traces from people who have CGM most weeks, then most doctors got to see in their 7 years at medical school …….. I don’t have a CGM, but benefit greatly for members who do, and the level of learning I have gained from the posts of their results have greatly improved my BG control without me needing to get my own CGM.

In some ways I would like to see the NHS stop all funding of the Libre for a time, and use the money to give each doctor one to monitor their own BG over 4 weeks……….

(PS, the hopital advice to spread out the carbs is a lot better then having them all at the same time, and it would take a lot of testing with a normal BG meter to prove people can do better.)

 

[Jo_the_boat]

I've been low carb but not high fat (it quite literally goes straight through me, I have the test result to show that) for 4 years. That was fine until my HbA1c last Christmas when something went wrong, basically glucose being made from protein and what little fat I did eat. The only thing that really worked quite well was the Newcastle Diet, although I didn't follow the regime to the letter, I was usually eating less than 800 calories per day by just removing sources of protein.

The result was a very pleasing flat line BG between 5 and 7 for days at a time, no increases any time of night or day which is previously what had been happening. I should mention that this information was collected thanks to the FreeStyle Libre, a game changer.

I've read that the liver is using surrounding fat and from within the liver itself to produce glucose. I need to go back to my research to check the exact details. When talking about fat around any organ we have to remember that skinny people are not exempt, their organs can have as much fat around them as an obese person. On the TV I saw scans of three brothers aged 14 - 17, one very obese and the other two average, when looking at internal fat, you wouldn't know the difference.

Yes, interesting. Just further demonstrates it's not one-solution-suits-all condition.

 

[DavidGrahamJones]

Just further demonstrates it's not one-solution-suits-all condition.

The body is an amazing thing, shame we're not a one size fits all.

 

[leahkian]

Another thing is that diabetes is always changing with research, types of diabetes, new insulin and better insulin pumps. I remember when i was young seeing the first insulin pump, it was the size of a dinning room table nothing like today. When you read the papers it got this is bad for you or you should eat this, but different foods, weather and stress can effect our BS levels. I know my consultant is trying to develop inslet transplants to have them last longer, which is why i trust him with my life he has so much passion at trying to help diabetes move forward, when i had my SPK i seen him on the transplant ward at 10 pm and i new he had been in clinic all day. I was at the transplant center for a check up 2 weeks ago and was moaning about sometimes not being able to watch my son play football and he told me that he has missed a lot of his children growing up as he had been doing transplants at all times of the day and night. Then i thought they are 2 men who give up so much to help people like us and without them where would we be and i know that they have both been offered jobs else ware in the world but chose to stay here in our failing NHS because thats why they became doctors. Yes sometimes we get a consultant who thinks that you are just a number but when i was in having my transplant i had a fellowship doctor from Nigerea who was 6f plus and the size of the door but always had a smile on his face and in the end he was my best mate in hospital and seeing his smile even when he was taking blood just made me smile. He was always there if i did not understand something and he always got a canula in first time, now that's a good doctor.

 

[phdiabetic]

Remember everyone who is active on this forum gets to see more detailed glucose traces from people who have CGM most weeks, then most doctors got to see in their 7 years at medical school …….. I don’t have a CGM, but benefit greatly for members who do, and the level of learning I have gained from the posts of their results have greatly improved my BG control without me needing to get my own CGM.

In some ways I would like to see the NHS stop all funding of the Libre for a time, and use the money to give each doctor one to monitor their own BG over 4 weeks……….

(PS, the hopital advice to spread out the carbs is a lot better then having them all at the same time, and it would take a lot of testing with a normal BG meter to prove people can do better.)

I would love it if doctors had the opportunity to learn more about type 1 and CGMs. Not just the facts, but lots and lots of examples of people's daily lives. I wish there could be a book where type 1's send in a summary of their day and the decisions they made (food, insulin, exercise, highs and lows and treatment for them, their blood tests) and then a team of endocrinologists, dietitians, diabetes educators, GPs, and other medical people commented on what happened. I think it would be useful for newly diagnosed (and even more experienced) diabetics to read it, and perhaps doctors would see more of what it's like to live with diabetes, and the way it affects you every day.

 

[DavidGrahamJones]

I would love it if doctors had the opportunity to learn more about type 1 and CGMs.

Some do, my GP is very well informed.

 

[mytype1.life]

Thanks for your kind words @JoeT1.

I agree @EllsKBells

I appreciate I am generalising and consultants do only see a snapshot - there are also many fantastic healthy professionals out there. My personal experience is that my consultant doesn’t advise or seem to understand the realities of T1, just the textbook stuff.

It’s not just that that frustrates. It’s the lack of interpersonal skills. My last appointment I was in tears by the time I got to my car (and trust me, I rarely cry!) because of how frustrated I was. Had to book a day off work to be told my consultant would have to start answering questions as why she’d allowed for me to have a pump (such expensive treatment) but my HbA1c wasn’t improving.

@DavidGrahamJones re: dawn phenomenon, I’ve made changes to my basal to cover the major spikes, DP seems to reduce when I’ve exercised the night before and not eaten too late. That said I still have the odd day where it happens without reason. I swipe my Libre at 10pm/12/5am to see what’s going on and try to correct any spontaneous spikes.

 

[DavidGrahamJones]

dawn phenomenon,

Thank you.