Really Annoyed...And more than a little scared.

[Susan1974]

Hi XIX

I was diagnosed 17 years ago as T1 when I was in my early twenties. I completely understand your issues with food and diet. I had an eating disorder in my teens and I have to say it has never really left me. I was in denial to begin with that there was anything wrong with me. However I quickly realised that the more sugary and fatty foods I ate the more weight I lost if I didn't take my insulin. I ended up extremely skinny and very ill. There is a name for this - it's diabulimia and I had it for years.

I have lost count of the times I ended up in Hospital with ketoacidosis. I have been in intensive care twice. The last time I suffered a cardiac arrest and my family were told I wouldn't be going home. I have kidney failure heart failure retinopathy ulcers on my feet leading to various bone removals. I have had surgery to remove abscesses. My hair is falling out and my teeth crumbled. I can't wear boots or shoes only trainers. My teeth cost me thousands of pounds to fix. I also have ibs and can't go anywhere without checking the layout and routes for toilet facilities. I am currently on the transplant list for a kidney and pancreas which apparently is about 4 years at present. Do I have that long? I do dialysis 3 times a week. I need a double heart bypass but have had 2 stents in the meantime. I also need my gall bladder removed. I like to stay slim but because of the kidney failure I retain fluid and it sits in my legs arms stomach face etc and sometimes I look bloated and puffy as I need dialysis to remove the fluid as I can no longer get rid of it myself.

The reason I am telling you all this is not because I am looking for sympathy but to hopefully shock you into getting control of your diabetes before it controls you. As a woman I understand how important appearance is and despite everything I still look after myself and like to look my best. I was warned about complications but thought I would have years before anything happened and I would have good control before that. It didn't happen like that. You can't afford to be complacent about this illness. I know it sounds vain but if someone had told me as a young woman of the physical changes to my appearance I might have heeded them a lot quicker and I wouldn't be in this mess now. It's completely my fault and I know it and that makes me so angry with myself.

However I recently completed the DAFNE course about counting carbs and ratios of insulin. I'm not going into detail here as there's too much to it just to say do this course!! It's fantastic! It teaches you that there need not be any restrictions in food if you count the carbs. It is tailored to your personal needs. Food need not be so much of an issue and nor is alcohol. I really wish I'd done this course years ago. Your diabetes consultant will be able to give you details

I guess what I'm trying to say is I know how hard it is when you have an eating disorder. I still feel guilty about everything I put in my mouth but I hope that what I've described to you is enough to encourage you to take control of this disease and look after yourself. If you don't you will lose everything that's important to you as a female. I have been like this for years and I'm not yet 40.

Please look into doing the DAFNE or BERTIE courses. One is done over one week the other is done one day a week for five weeks. This will arm you with all the information you need to control your diabetes properly and to still have a decent social life. It's a bit of hard work initially but once you've done it it's so worth it and should make sure you stay healthy and well until this cure is found.

If you need to ask me anything or chat then feel free to get in touch. I will be only too happy to help in any way I can

I have a husband and two kids and mum and Dad and sister etc and I love life and will fight to get through this for as long as I need to but if I had listened in the first place I wouldn't have to fight at all!!

Sorry this post is so long but I hope it's helped!

Good luck with it all!!

Susan

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[ann34+]

Thanks for sharing your experience, you're right those kind of incidents can be hard to predict/control. I was talking specifically about limiting long term complications however, which in my opinion is very controllable in comparison.

I see what you mean, we probably agree mostly. I mentioned not always controllable hypos because there is now research which suggests that, over the years, hypos themselves may cause a number of long term problems . At least these days, management systems are much improved, and it is often possible to have smoother control, and there is the hope of a closed loop system on the horizon, which will make things safer. Best wishes.

 

[Omar101]

I'm not from the UK and so I've never been to a DAFNE course nor have I looked into them in any regard(and I should) but from what I hear about them from people on this forum they sound either extremely basic and for the recently diagnosed or extremely uninformative to the point of spreading misinformation.

This will probably be an unpopular opinion here but the information people are taking away from these courses seems to be that hba1c's of 6-7 are the best that they can achieve and they shouldn't try and aim for 5's. When there is clear and established evidence that even slight increases in hba1c result in a dramatic increase in heart disease and other complications

http://www.cardiab.com/content/10/1/58
("Overall, risk of CVD was significantly 2.4 times higher in individuals with HbA1c ≥6.5% versus <6.0%.")
http://www.ncbi.nlm.nih.gov/pubmed/15381514
("An increase in hemoglobin A1c of 1 percentage point was associated with a relative risk for death from any cause of 1.24 (95% CI, 1.14 to 1.34; P < 0.001) in men and with a relative risk of 1.28 (CI, 1.06 to 1.32; P < 0.001) in women. These relative risks were independent of age, body mass index, waist-to-hip ratio, systolic blood pressure, serum cholesterol concentration, cigarette smoking, and history of cardiovascular disease.")

http://diabetes.diabetesjournals.org/content/41/2/202.full.pdf
("The relative odds of CVD increased 1.39 fold for increases in HBA1c of 1% (eg 5 to 6%)")

People also seem to be taking away from these courses that what they eat is irrelevant so long as they count they're carbs when it should be known that post-prandial blood sugar spikes are what can cause significant damage in type 1 diabetic individuals, heck from what I hear people are told not to check their sugars before 4 hours as they can complicate their insulin needs and calculations.

They also seem to be using outdated guidelines from the American diabetes association which recommends fasting sugars of 7mmol/l and meal sugars of 10mmol/l. http://www.diabetes.org/living-with...cose-control/checking-your-blood-glucose.html

People also seem to be told to eat lots of wholegrains, to avoid saturated fats because they can cause heart disease(WHAT?!?!) and that low carb diets are *bad*

Am I just getting the wrong idea from my fellow t1's on this forum or is that the consensus among most is to follow these kind of guidelines and accept that future complications are just unavoidable for type 1 diabetics.

 

[michaeldavid]

That does indeed seem to be the consensus of opinion here, which I do not share.

But what's wrong with eating lots of wholegrains, Omar101?

 

[Omar101]

That does indeed seem to be the consensus of opinion here, which I do not share.

But what's wrong with eating lots of wholegrains, Omar101?

Nothing is bad about wholegrains in particular, its just that they and breads in particular digest rapidly in comparison to other carb sources and cause blood sugar spikes. But whats really bad is that a high carb wholegrain diet is promoted as healthy and low fat is also marketed as desirable and healthy the result is a high carb low fat diet which can lead to insulin resistance and type 2 diabetes.

I've had numerous diabetes nurses and other t1's tell me that they avoid saturated fat and I should too because it causes heart disease. They ignore the fact that high blood sugars have been linked to heart disease and saturated fats have never been linked to it.
I'll just leave a snippet of a post I left on another thread a while ago:

When I was first diagnosed my cholesterol was dangerously high even though I never ate high fat foods etc. Most people have the misconception that saturated fat causes heart disease when in fact having a higher on average blood sugar causes cardiovascular disease, anyhow I eat a high fat diet now and my cholesterol levels have been fantastic better than average in fact. So that heart foundation tick you see on many food products is pretty much bogus.
(http://ajcn.nutrition.org/content/early/2010/01/13/ajcn.2009.27725.abstract)
(http://onlinelibrary.wiley.com/doi/10.1111/j.1445-5994.1994.tb04444.x/abstract)
(http://www.ncbi.nlm.nih.gov/pubmed/11584104)

edit: Forgive my excessive citing and referencing I usually try and keep it as layman as possible but I dislike leaving unsupported statements up in the air.

 

[Susan1974]

I think you're right. Your opinion will be unpopular amongst many diabetics and diabetes Specialist nurses and doctors in the UK. I think you should maybe look into the principles of the DAFNE course before you suggest that it provides misinformation.
I personally have found it to be invaluable in helping me to get to grips with my diabetes.


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[Omar101]

I think you're right. Your opinion will be unpopular amongst many diabetics and diabetes Specialist nurses and doctors in the UK. I think you should maybe look into the principles of the DAFNE course before you suggest that it provides misinformation.
I personally have found it to be invaluable in helping me to get to grips with my diabetes.


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You're right about that, I shouldn't be making assumptions about DAFNE based on the anecdotes of the people on this forum, take what I said and redirect it from DAFNE toward the general uninformed person on the forum.

 

[XIX]

Yeah, apparently BG levels above 7mM will increase the risk of complications, and a BG of above 10mM causes glucose to become present in the urine. So consequently you should try and maintain levels between 4-7mM at all times.

 

[michaeldavid]

I'm relieved to see you're back here in one piece, XIX, after your exploratory expedition for rye bread.

But this message is in part a response to Donnellysdogs, who yesterday expressed concern about my management of my condition - with specific reference to the rye-bread factor: "What happens if you go on holiday abroad for 2 weeks for example?"

It's remarkable that in a modern, Western country, rye bread is seen as somehow weirdly super-special. Yet it's not quite seen as bizarre or alien. (For then there should be no problem about getting the stuff abroad!) Rather, it's seen as egregiously eccentric.

But perhaps that's really just me.

So once you feel you have an opinion to give, XIX, I for one would be very interested to hear it.

 

[donnellysdogs]

My concern of going abroad was just an example...eg you will not be able to buy your favoured co-op bread abroad etc.

I believe you are being so rigid with rye bread and co-op bread that if you are a type 1 you could so very easily manage your basals and blouses and rises in levels with a pump rather than being fixed permanently to having to eat permanent ryebread...


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[michaeldavid]

Actually the Co-Op wholemeal (wheat) bread has near-uniform sized slices. And accordingly, I can use that as a guide to its carbohydrate value: eg. I find that half a slice equals 2mM. (Note that I'm adopting a form of notation I've seen used above, by XIX: apparently, 'M' is used to stand for 'mol/l'.)

I can't remember offhand what half a slice of the CoOp's wholemeal bread weighs. But if I should go on any holidays abroad, then all I need to do is remember to make a note of that weight before I go.

 

[XIX]

Hi XIX

I was diagnosed 17 years ago as T1 when I was in my early twenties. I completely understand your issues with food and diet. I had an eating disorder in my teens and I have to say it has never really left me. I was in denial to begin with that there was anything wrong with me. However I quickly realised that the more sugary and fatty foods I ate the more weight I lost if I didn't take my insulin. I ended up extremely skinny and very ill. There is a name for this - it's diabulimia and I had it for years.

I have lost count of the times I ended up in Hospital with ketoacidosis. I have been in intensive care twice. The last time I suffered a cardiac arrest and my family were told I wouldn't be going home. I have kidney failure heart failure retinopathy ulcers on my feet leading to various bone removals. I have had surgery to remove abscesses. My hair is falling out and my teeth crumbled. I can't wear boots or shoes only trainers. My teeth cost me thousands of pounds to fix. I also have ibs and can't go anywhere without checking the layout and routes for toilet facilities. I am currently on the transplant list for a kidney and pancreas which apparently is about 4 years at present. Do I have that long? I do dialysis 3 times a week. I need a double heart bypass but have had 2 stents in the meantime. I also need my gall bladder removed. I like to stay slim but because of the kidney failure I retain fluid and it sits in my legs arms stomach face etc and sometimes I look bloated and puffy as I need dialysis to remove the fluid as I can no longer get rid of it myself.

The reason I am telling you all this is not because I am looking for sympathy but to hopefully shock you into getting control of your diabetes before it controls you. As a woman I understand how important appearance is and despite everything I still look after myself and like to look my best. I was warned about complications but thought I would have years before anything happened and I would have good control before that. It didn't happen like that. You can't afford to be complacent about this illness. I know it sounds vain but if someone had told me as a young woman of the physical changes to my appearance I might have heeded them a lot quicker and I wouldn't be in this mess now. It's completely my fault and I know it and that makes me so angry with myself.

However I recently completed the DAFNE course about counting carbs and ratios of insulin. I'm not going into detail here as there's too much to it just to say do this course!! It's fantastic! It teaches you that there need not be any restrictions in food if you count the carbs. It is tailored to your personal needs. Food need not be so much of an issue and nor is alcohol. I really wish I'd done this course years ago. Your diabetes consultant will be able to give you details

I guess what I'm trying to say is I know how hard it is when you have an eating disorder. I still feel guilty about everything I put in my mouth but I hope that what I've described to you is enough to encourage you to take control of this disease and look after yourself. If you don't you will lose everything that's important to you as a female. I have been like this for years and I'm not yet 40.

Please look into doing the DAFNE or BERTIE courses. One is done over one week the other is done one day a week for five weeks. This will arm you with all the information you need to control your diabetes properly and to still have a decent social life. It's a bit of hard work initially but once you've done it it's so worth it and should make sure you stay healthy and well until this cure is found.

If you need to ask me anything or chat then feel free to get in touch. I will be only too happy to help in any way I can

I have a husband and two kids and mum and Dad and sister etc and I love life and will fight to get through this for as long as I need to but if I had listened in the first place I wouldn't have to fight at all!!

Sorry this post is so long but I hope it's helped!

Good luck with it all!!

Susan

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Thanks, that's actually really helpful motivation. I'm doing my best to keep on track but I can just tell that I've gained weight since diagnosis and that's as depressing as hell, especially as I know I can lose it much more easily than before...

 

[XIX]

I'm relieved to see you're back here in one piece, XIX, after your exploratory expedition for rye bread.

But this message is in part a response to Donnellysdogs, who yesterday expressed concern about my management of my condition - with specific reference to the rye-bread factor: "What happens if you go on holiday abroad for 2 weeks for example?"

It's remarkable that in a modern, Western country, rye bread is seen as somehow weirdly super-special. Yet it's not quite seen as bizarre or alien. (For then there should be no problem about getting the stuff abroad!) Rather, it's seen as egregiously eccentric.

But perhaps that's really just me.

So once you feel you have an opinion to give, XIX, I for one would be very interested to hear it.

Yeah, I've finally managed to track down some rye bread (I live in central London so all the supermarkets are quite small), and I can say that it definitely makes my BG spike less than other sources of carbs such as bread (both white and wholegrain) or cereal. I normally have a morning insulin:carb ratio of 1:10 but I've found with rye bread that I need to use 1:15 instead. Obviously though, it still does increase my BG levels somewhat as the brand I have is about 29% carbohydrate.

I also have to admit that the taste is growing on me....it's gone from horrendous to palatable.

 

[michaeldavid]

What I find is that, crucially, it tends to make any DOWNWARD spike less severe.

So long as I keep eating it steadily, and don't eat too much in one go, then I find I can safely keep my blood sugar both stable AND near normal all the time.

Naturally there is some fluctuation. But I can quite relaxedly tolerate low readings, and act on them, which before would have left me on the floor and in need of help.

Any rye bread seems to have the same effect - from the lighter Polish style to the heavy pumpernickel. (But be careful not to eat too much in one go.)

I stop eating it after 4.00pm, because otherwise my blood sugar would rise in the evening. (I don't take any significant amount of long-acting insulin; I have practically zero insulin operating within me by 12.00 midnight, so I know I will sleep safely.)

Spelt bread, too, seems to have the same effect. But that's expensive.

I test my blood sugar quite a lot. (One must keep an eye on that fuel gauge!) But mostly I use visually read strips, which I find to be ideal - they're so simple and un-fussy. (http://www.betachek.com/uk/)

Oh! And I don't need to bother about any 'insulin: carb ratio'. (I don't even know what they are.) I simply 'feed the insulin'. (That's why I need to keep checking that fuel gauge.)

It's so very simple, just like me.

 

[donnellysdogs]

Nobody should run there levels down to 2.0 (which you say you go down to at 11pmish) and say they have good tolerances of hypo's.....
Hypo's are dangerous... At some point again you will return to having bad ones.. Without a doubt.
Each time you have a levell under 4.0 you are starving your brain in someway of glucose, and that is not good.
There is no way you can be applying for a driving licence without lying on the forms, if you drive.


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[michaeldavid]

I don't.

This evening at 11.00, it was 4mmol/l.

Goodnight!

 

[Juicyj]

What diabetes is to each of us is very individual I've learnt since diagnosis. I found to manage my levels and remain within the 4-7 parameters is impossible, I have hormones which send me high around 2 weeks each month, I'm more insulin resistant in the mornings, gardening and shopping can send me hypo and sitting down in an office all day can send me hyper. For me personally I now omit carbs in the daytime so start the day with a flaxseed muffin and cheese, then salad and fish for lunch and then I cook for the family at night and eat very small amount of carbs. I eat full fat diary, cheese and only have glucose for a hypo. At the weekend I love a glass of red so have a couple then. It's taken time since diagnosis to get this right but I am happy and my consultant is happy so I go now once a year to see him. There are so many factors that affect how you can manage this best for yourself but I've found listening to others and being on this forum has helped hugely, DAFNE is great for being normal and adjusting for that but to take this to the next level means stripping out carbs which cause the spikes and I hope over the long term this will protect my health too.

 

[vez84]

On some level, we never except that we have been given this x


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[itconor]

your right in that itll never be easy and other people dont realise the though process you have to go though before you do anything. but you'll cope and all you can do is try live as best as you can. as for the 10 years cure thing. i was told that when i was diagnosed (11 years ago) as far as i can tell since then nothings really changed. i still use pens and have to prick my fingers for a sugar test. oh well.

 

[Dillinger]

I stop eating it after 4.00pm, because otherwise my blood sugar would rise in the evening. (I don't take any significant amount of long-acting insulin; I have practically zero insulin operating within me by 12.00 midnight, so I know I will sleep safely.)

Spelt bread, too, seems to have the same effect. But that's expensive.

Could I just say that XIX, very rightly, wanted to have a bit of a shout at diabetes; she didn't ask about your, in my humble opinion, crazy method of controlling diabetes, perhaps with respect to her first post you could keep this to a separate thread?

@XIX - here is a link to a post I made a while ago to someone who was also very angry but not handling things as well as you, I stand by what I said in that post and hopefully some of it might be helpful to you. You sound smart and you sound like you are going to be proactive with this so that means you are in a good position to handle all the difficulties of this annoying illness.

http://www.diabetes.co.uk/forum/threads/whats-the-point.38533/page-2

Best

Dillinger