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Not happy with this diabetes scenario

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First of all have to opologise for my dry sense of humour, had diabetes 23 years since ten years of age seem to muddle through never missed an injection tested regular, at the minute not very well controlled with an HBA1c of 10 percent. Don't eat sweet stuff but do love carbs white bread crisps pasta and after a few hours when my stomachs empty I feel sickly if I don't have some carbs can you really get addicted?? well apart from my anxiety feeling like **** most days ive been plodding along, had a retinopathy check they found some blood vessels leaking at the back gota have a thorough exam in couple weeks said might have to have some treatment had eyes tested every year and to make it worse without being crude but like being honest, noticed the downstairs department is going limp is this the shape of things to come iam 32 and feel like iam ready for the knackers yard already. I don't wana be a mess. My wifes expecting a baby in a few weeks so ive been excused but when times get lonely it takes that long my right arms becoming like popeyes. I know I should sound more serious but that's just my way of dealing with it...my eyes are a concern but il have to wait see what they say but surely I cant be having Viagra at 32??
 
Sounds like you could do with a DAFNE course to improve your control, 10 is really high and nerve damage such as causes downstairs issues is irreversible. With DAFNE you can eat carbs but adjust your insulin according to what you eat, injecting every time you eat and testing before every meal so you can also correct high BG


Kim x
 
I would endorse the DAFNE course suggestion - 10% is dangerously high.

10 years ago, I had early signs of retinopathy & other complications. Now, after 5 years of low carb I'm free of complications & no sign of retinopathy.

I had disabling muscle cramps 5 years ago - and a change of diet changed my life to such an extent that I play tennis & table tennis to club standard - at 74. . I very rarely get cramps, but if I do, it's because my BG is increasing towards 7. I have to keep the average & the HbA1c below 6.5. Medication (quinine) did not help - & my wife gave it up because of quinine complications.

Carbs are NOT sustaining they just wreck your control & cause complications - you need proteins & fats? What are your BG readings? What does your Dr advise? But I doubt you wil get good advice (beyond DAFNE) from your diabetes support team.

Many diabetics with successful control use a low carb, increased fat diet - we have to get our energy from food, & if not carbs, fat - despite the low fat mantra we contrantly hear.

I wrote this in reply to another question - I hope it's helpful:

I'm T2 & 74 y-o so my advice is questionable BUT
diabetics can't digest carbs properly, - they tend to raise blood glucose, so you inject insulin to bring the BG down again, get a hypo & eat more carbs - you're seeing a trampoline effect.

IMO you need to eat sustaining food - proteins & fats that take longer to digest & therefore slower to raise BG AND maintain a healthy BG for longer.

I would suggest - porridge 50/50 with ground almonds & full fat milk;
scrambled egg made with butter;
cheese-on-toast, cheese sandwiches with more cheese than bread;

I'm not at this time suggesting a very low carb diet, but a more balanced diet. (I have corrected complications by low carb diet.)

I took my diet advice from a T1. See this link
 
I completely agree with IanD. You must reduce your carbs and move to low-GI wherever possible. An HBa1C of 10% is way too high when you are on insulin. If DAFNE says you should have carbs and adjust insulin to match then I'm not sure it's a good course to go on (purely my opinion of course which others may disagree with). Keeping carbs down and with insulin matching that level will minimise sugar swings. I hope you can re-arrange your diet so that you can have a good future with minimal long-term damage. BTW I assume you are aiming with your insulin Basal to have a morning fasting of around 6 mmol and Bolus thru the day to keep below 8-9 mmol after meals?
 
Daibell said:
I completely agree with IanD. You must reduce your carbs and move to low-GI wherever possible. An HBa1C of 10% is way too high when you are on insulin. If DAFNE says you should have carbs and adjust insulin to match then I'm not sure it's a good course to go on (purely my opinion of course which others may disagree with). Keeping carbs down and with insulin matching that level will minimise sugar swings. I hope you can re-arrange your diet so that you can have a good future with minimal long-term damage. BTW I assume you are aiming with your insulin Basal to have a morning fasting of around 6 mmol and Bolus thru the day to keep below 8-9 mmol after meals?
Click to expand...

I disagree. I have just had my hba1c on Friday and it was 6.1% WITHOUT low carbing. Average day is about 150g. Bit if I'm out for dinner ill easily eat more and not stress about it. I aim for low GI carbs, but I always did pre-diagnosis anyway as I aim to eat healthily

Timing of injections is key to counteracting the affect of the carbs. This is (I believe) partially covered in DAFNE. I'm on the wait list of the course myself :)
 
Been on the dafne course years back pretty much know what's in most food was on 2 injections a day my hba1c was always at 6 or 7 percent for prob 15 years or more I was happy until they advise me to change to nova rapid and at first lantus I lost loads of weight geting ketones all the time even with near good sugars changed to levimir went on dafne after bout year or so id had enough went back onto my preferred 2 injections but taking about half what I used to but now reluctantly to keep uping it through hypo anxiety etc for me its weird the more information I have the harder it is to control time to start believing in myself and my body again iam not blaming anyone but why push me to change if I never had a problem before never had one aka or passed out through an hypo I was fit and never had an hba1c above 8 until they convinced me this new regime would be so much more better and flexible I don't think so
 
Hi Hale710. I think in fact we largely agree. As my sig says I target 180gm/day or less and am happy to have a meal out and binge occasionally with increased insulin to match. Although some choose to go down to 50 gm/day or less i.e. ultra low-carbing I think many of us may sit between 100 - 200gm which I describe as low-carbing as the Eat Well Plate advice etc recommends a daily calorie intake beyond what many of us need with carbs nearer 300gm
 
IanD said:
Carbs are NOT sustaining they just wreck your control & cause complications - you need proteins & fats? What are your BG readings? What does your Dr advise? But I doubt you wil get good advice (beyond DAFNE) from your diabetes support team.
Click to expand...


Well I eat all three Ian much like everyone else does on the forum (don't know of anyone on a zero carb diet) and to say carbs cause complications is misleading, it's uncontrolled and prolonged bg that is the cause of complications not carbs themselves.

Take for example members of this forum, some restrict their carbs to less than 30g a day and have very good control, equally there's those who eat 100g, 150g or 200g and also have great control, eliminating carbs isn't always the answer, were I to have a breakfast of eggs and bacon my insulin requirement would be nearly the same for my normal breakfast of porridge, both breakfasts would see a postprandial bg rise but the eggs and bacon would require me to inject twice for the meal so that my bg levels would be on target before I next ate.

As for doubting that anyone will get good advice from their diabetes team, that's just your opinion Ian just as much as I would say that someone would get good advice, we should never deter anyone seeking professional help as we are not in a position to to so.
 
Daibell said:
Hi Hale710. I think in fact we largely agree. As my sig says I target 180gm/day or less and am happy to have a meal out and binge occasionally with increased insulin to match. Although some choose to go down to 50 gm/day or less i.e. ultra low-carbing I think many of us may sit between 100 - 200gm which I describe as low-carbing as the Eat Well Plate advice etc recommends a daily calorie intake beyond what many of us need with carbs nearer 300gm
Click to expand...

Sorry, signatures don't show on the phone app so I don't see that!

I was lazy with my quote, should have cropped it up just the part that says you don't think DAFNE is a good idea! That's why most of my response was about DAFNE lol
 
DAFNE works well to get HbA1c results into the 7 percents, but out of the half dozen or so clinical studies that I have read, none have got the patient population below the 6.5% target. Sure, some people will do well on it, but if we are to judge the success of DAFNE on its general efficacy (as you should do with any clinical treatment), then it's a complete and utter failure. That is backed up by the National Diabetes Audit that found that only 7% of Type 1s get an HbA1c below 6.5%.
 
According to research low carb dieting is mainly for type 2 diabetics, yes it can benefit a type 1 but no evidence to prove this as yet. Type one diabetics are advised to count carbs to insulin ratio by there diabetic teams.


Sent from the Diabetes Forum App
 
SamJB said:
DAFNE works well to get HbA1c results into the 7 percents, but out of the half dozen or so clinical studies that I have read, none have got the patient population below the 6.5% target. Sure, some people will do well on it, but if we are to judge the success of DAFNE on its general efficacy (as you should do with any clinical treatment), then it's a complete and utter failure. That is backed up by the National Diabetes Audit that found that only 7% of Type 1s get an HbA1c below 6.5%.
Click to expand...


I would be very reluctant to call it a failure Sam, the DAFNE course graduates see's a reduction in Hba1c of around 0.9-1.1 last time I looked, for every 1% reduction the risks of complications reduces the chances of Retinopathy by 38%, Nephropathy by 28% and Neuropathy by 28%, so if anyone has completed the DAFNE course and seen such a reduction that can only be a good thing in my opinion and I certainly wouldn't see it as a failure by any stretch of the imagination . The other benefits of the course are reduced hypo's and hyper's, improvements in hypo awareness where patients have seen a decline in their warning symptoms and overall quality of life post DAFNE, all are immeasurable IMHO. The many 100's of positive posts on this forum speak volumes about the course.

The 6.5% target is just that.....a target! We have type 1 members on this forum who are just above this figure (late 6's) or around the 7% mark and are exceptionally well controlled and pleased with their results, indeed some don't wish to see a further reduction and are happy where they are, although the recommended target levels are 6.5% very few diabetes clinics are prepared or happy to see their diabetes patients fall below this figure due to the diminishing effects on hypo awareness.

The low-carb link was interesting although I've just briefly read it, the 52% drop out rate was quite high and as there doesn't appear to be a follow-up after the 4 year trial I wonder what the figure would be many years after. I would be more interested in a similar trial where the carbs weren't restricted as much. As you know very few type 1 can follow a Bernstein style like yourself due to the restrictive nature of the diet, perhaps if if they did a trial say where type 1's were given a low-carb diet of 120-130 g a day I wonder what the outcome would be and whether the trial would have a higher success rate in terms of participants not dropping out?

No two ways about it some form of carb control does help in type 1 diabetes management.......that I would never disagree with, however very restrictive low-carb diets are inevitably hard to stick to and as such this explains why they are not widely recognized as a means of controlling diabetes, a moderate approach to carbs plus the the knowledge gained from personal experience and carb counting courses such as DAFNE are much more sustainable in the long term.
 
I refer to it as a failure because NICE's a Diabetes UK's target is 6.5%, which is the HbA1c that the risk of complications is near unity with the non-diabetic population. In that respect, DAFNE is inefficacious and therefore fails to meet targets. Sure if your HbA1c is > 8% then it will do you good, but my retinopathy didn't disappear until I got my HbA1c into the 6s. If I had carried on with DAFNE I would still have it.

As you pointed out, the drop out rate is high (~50%) and it can be difficult to stick to such a supposedly restrictive diet (although I don't feel restricted). Saying that, the results are spectacular: of those that stuck to it, their HbA1c was 6.0 +/- 0.6% after 4 years. Imagine if half of the Type 1 population achieved that instead of just 7% that currently have an HbA1c < 6.5%.

A NICE report I read on DAFNE stated that hypo frequency increases, but perhaps a different study found different conclusions.

I too agree that a clinical trial of mid-level carb consumption would be welcome. I think a diet like that is probably the best solution. The systemic attitude peddled by DAFNE of "fill your boots with carbs and cover with insulin" is likely the source of only 7% of people hitting the HbA1c target. What I want to see is more measured advice, a "carb-controlled diet" for want of a better phrase. As we've recently discussed lower amounts of carbs means lower amounts of insulin, which means smaller mistakes. This should be the advice given out to diabetics, not the inefficatious "fill your boots" advice.

Personally though, I'm not against carbs. I just get very irritated by certain members on here denouncing the low carb route. We're all different. We all react to carbs and insulin differently. What's right for some, isn't right for another. If some people can only control their diabetes with low carbing then surely that's a good thing? Likewise, I congratulate anyone that is either happy eating carbs and happy not getting to the 6.5% target. And I congratulate anyone that eats carbs and hits the target (who, as discussed, are very much in the minority) - I couldn't do it, but I wish I could.
 
I have similar feelings to you Sam, but in reverse lol as you say, everyone is different with regards to their health. But I find so often that the standard answer to anything people say on here is "reduce your carbs, LCing is the only way forward" which is a generalisation. So I find that as irritating as you surely find me saying "you don't HAVE to low carb" haha

When I first came to the forum it was quite intimidating reading all the posts saying low carb is the best option, and I seriously considered that I might have to do that. But I think it was a post from you actually that said that you wouldn't low carb unless you have you, so I figured I'd give my "normal" diet a go first. And I'm so pleased its worked for me. A lot of thought has to go into doses, much the same as LC. But I've gotten a great result so far, but I will have to rethink LC if my BG starts shooting up


So yeah..... Not sure what point I was trying to make anymore haha
 
DannyH

I'm afraid that if you continue to go on as you are with the way you control your bg levels, then you will develop nerve damage that will threaten your eyesight. I would imagine that you are now going to need probably laser treatment done on your eyes which will also cast a shadow on whether you will be able to carry on driving a car (that's presuming you do).

Twice daily insulin jabs are fine as long as bg testing is done and eating specific amount of carb within set time frames. If you just eat whatever you want, whenever you want, without bg testing, what on earth can you expect :crazy: :evil:

None of us like diabetes or doing insulin jabs or bg testing for that matter, but adhering to it all does usually ensure that complications, if any, are minimal.

Take the retinopathy warning seriously and start to play the game a bit more otherwise you will find yourself paying a nasty price for leading a carefree life. Give up the alcohol as all that is doing is messing up your liver...
 
As mentioned on a previous post, it's not reducing carbs per se, but reducing insulin doses that improves control as it leads to smaller mistakes (I'm starting to sound like a broken record on this one!). Most experienced, well-controlled diabetics recognise this. You're in your honeymoon, or have an exceptionally high sensitivity to insulin and so you do not need to low carb. Because of this you require less insulin, which has contributed to your excellent HbA1c. You are living proof of the small dose hypothesis! This is why many people on here promote a reduction in insulin dosing via carb reduction.

I'm sorry if you felt it was intimidating, but many people who come on here have struggled with their diabetes for many years, including myself. I personally found it completely liberating to finally achieve the HbA1c that reflected the effort I put into my diabetes, via low carbing.
 
I'm both in honeymoon and have extreme insulin sensitivity - it's a winning combination I want to keep ;)
 
SamJB said:
As you pointed out, the drop out rate is high (~50%) and it can be difficult to stick to such a supposedly restrictive diet (although I don't feel restricted). Saying that, the results are spectacular: of those that stuck to it, their HbA1c was 6.0 +/- 0.6% after 4 years. Imagine if half of the Type 1 population achieved that instead of just 7% that currently have an HbA1c < 6.5%.
Click to expand...

But you do have to ask yourself would half of the UK population want to reduce their Hba1c by 0.5% if it meant following a restrictive diet? Restrictive diets......by there very nature are hard to adhere to in the long-term whether they are low-carb or any other approach where self-restraint is required.

Appreciate what you say about you not finding your diet not too restrictive but when I joined this forum there was an overwhelming opinion that a VLC diet was the best approach to manage type 1 diabetes, with this in mind I did a little research on-line looking at Bernstein style diets (mainly in the USA) and found that those who tried to follow a VlC diet using minimal amounts of carbs at each meal had a high drop out rate, some of the forums made interesting reading and that is why I decided to start-off on 60-70g a day increasing to 90g where I stayed for a several weeks before increasing to 90-130g, although I've increased it since this time I've managed to lower my overall bg readings, Hba1c and still have good cholesterol levels and bp, anything below 120g I know I couldn't stick to long-term and see carbs as part of a healthy well balanced diet, I've never seen the need to reduce carbs the more than you have to TBH.

As we have agreed on, a more moderate approach to carbs would be in the best interest of all, if people did say reduce their consumption by a third or a half and seen the benefits they may be inclined to reduce it further, recommending that someone should start at the minimum and work their way up (as I did I suppose) doesn't always work as as that initial sudden drop can be counter-productive, I do wonder sometimes if this is why some members on here come looking for advice disappear without trace.

There never is and never will be one approach to diabetes management that suits all....and that is a fact! The ''Fill your Boots'' approach that you say exists within DAFNE I can't say I've heard before and it certainly wasn't mentioned on the course I attended, we were led to believe (and I'm sure it says so in the handbook) that DAFNE doesn't advise what is a healthy diet and suggests that healthy eating is a personal choice.

Interesting what you said about your retinopathy, mine began to stabilise once I got around 7 with my Hba1c which the Ophthalmologist advised, after I got around that figure the problems subsided, I've been clear of problems for 8 years now so lets hope things continue that way for us both :thumbup:
 
Maybe I was too flippant with the "fill your boots" comments. Let me clarify: the "For Normal Eating" bit in DAFNE, is the heart of the very problem I have with it. As discussed, I'm in favour of reduced carbs so that the insulin dose is low. That is what needs to change in my opinion. I'm in favour of carb counting and all the rest of it, but the dietary advice of eat normally (i.e. the RDI of 300g/day for men) is what is inefficatious. There needs to be a paradigm of a "carb-controlled" (moderate/reduced/low carb) diet, not the "eat normally" philosophy.
 
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