Should I do what the specialist nurse says.

[xyzzy]

If it was me I might consider lying to her that I've moved up to 200grams carbs (how about moving up a bit anyway as Grazer has suggested?). Your Hba1C will increase and perhaps she will then consider adding another tablet. Sitaplitpin is worth a try as it does reduce spikes, has few side effects and doesn't increase weight. I think you are being too tough on yourself trying to keep BS readings as low as you are now getting. Sitagliptin did reduce my spikes initially although it is having less effect for me now but that's probably due to a knackered pancreas (possibly another one with LADA?). If you have at least reasonable pancreatic function it could be a useful adder.

Thanks Daibell

I have just eaten an averaged sized roast chicken, veggies, gravy with 3 roast potatoes + fresh fruit salad pud. So we will see what that does at 8.30 tonight. Like I said to Grazer I have no problem so long as I end up under the danger levels. I am concentrating on bring my fasting level down specifically so it gives me more range to play with. I really am less concerned by the +2 hours honest! The trouble is I seem to flip from something having no effect to "mental" within a very small margin so at the moment for example I know 25g of rice wont spike me but 50g is a mental amount, even more pronounced with pasta and bread.

I SPECIFICALLY asked her for Sitagliptin she said it would do me no good. I know from my own research that statement was likely untrue but don't have any medical background so wasn't confident enough to call her bluff. She says I'm Type 2 and won't consider LADA (or won't pay for the tests) despite a family history of it so what you say is all very interesting.

 

[AMBrennan]

Now I am very reluctant to tell anyone to disregard medical advice... her advice seems consistent with NICE guidelines (sorry) blindly applied to situation they don't really apply to (increase medication if HbA1c high, patient wishing to change to a higher-carb diet isn't covered at all iirc); having said that, however

Your meter readings show you're better now so if you eat 200g carbs a day you will be fine.

That's just nonsense.

Stop all your testing it will make you anxious and depressed.

She may have a point; however, the conclusion that stopping testing would make you less anxious or depressed is false.

No we'll review when you've gone back to eating 200g carbs per day.

Could you do that for a week with the carbs you want to eat and make an emergency appointment with her if the readings are consistently high?
Alternatively, you could try arguing that you won't be able to prove how much you've eaten, and thus would be able to get any readings you want, forcing her to prescribe more medication anyway.

 

[Camilla]

So this morning I have been in a discussion with the specialist diabetic nurse I was referred to. I took along my printouts. These show my BG readings, what I eat, carb count, average carb count, calories and average calories. What I wanted to discuss with her was the following.

"Look my BG's are really good and now mostly between 4.5 and 6.0 at all times. However to get that I can only eat around 60g carb per day and my calorie intake is around 1300 per day. What can you do so that I can actually eat MORE carbs as I would like to do so. The trouble is if I try my BG's spike widly on anything more than 25g of rice, pasta etc etc."

Her initially quite angry responses.

- You're not eating enough carbs eat 200g a day now.

- Stop all your testing it will make you anxious and depressed. Eat 200g of carbs and don't worry.

- You could go on insulin

It took me a while to convince her that

- She had as much chance of getting me to stop testing as a brick flying so that wasn't going to happen as I suffer from anxiety so stopping would make me depressed as I'd feel out of control.

- I really do want to eat more carbs (not 200g though) and that I am not a low carb nutter.

- All I wanted her to do was suggest and discuss a course of medication that would allow me to eat more carbs. I did not want to go on insulin.

Her response

- You're not eating enough carbs eat 200g a day now.

- Showed me the piles of rice piccies in the carb / cal book and asked me to point to the portion size I eat. I pointed to the smallest portion and said about half of that or else my BG would be in double figures.

- Eat 200g of carbs a day for the next few weeks and prove to me you spike as you say.

- You really sure you don't want to go on insulin.

My response.

- No I don't want to go on insulin. I want to control with diet and Met and a minimum of other drugs. Please prescribe me something so that I can get a better balance of fat / protien / carbs. I agree with you I want to eat more carbs.

- I would rather not go back to 200g carbs per day without help because that's exactly what I was doing all of last year and my HbA1c went from 7.3 to 9.9.

Her Reply

- No we'll review when you've gone back to eating 200g carbs per day. Then I'll reconsider prescribing other meds to help you to stop spiking.

- Your meter readings show you're better now so if you eat 200g carbs a day you will be fine.

- By the way when you start eating 200g of carbs expect to put back on some of the weight you've lost.


Comments please. Should I take her advice?

Oh my lord. You need to be strong and stick to your guns. You are doing great. Can you see your doctor for a solution to this. It is not unreasonable to try to eat a little more carb but keep great control. This 'specialist' nurse really does not appear to know what diabetes is. What is this fixation they have with eating 'lots of carbs'. It is just so depressing that such people do not understand what it is we diabetic need to do. Be strong.

 

[Camilla]

I too find that I must test twice a day or I feel out of control. The way this nurse says to stop testing is very unreasonable. I cannot believe the battles that we have to fight to stay healthy. It is as if the medical profession is directly trying to get us to fail so that they can medicate us more and more.

 

[AMBrennan]

Addendum to clarify: The reason I am reluctant to advise anyone to disregard medical advice, apart from the obvious, is that I will have to rely on my health care team to manage my condition for the 50 years - and I really don't see that working if I second guess their every decision. But that goes both ways, of course - if they don't listen to you and doubt everything you say (e.g. slightly larger carb portions causing unacceptable spikes) then it's not going to work either.

 

[xyzzy]

Update on todays main meal.

Me: Meal was roast chicken, veggies, 3 small pieces roast pots so 1 and half small potatoes + my normal fresh fruit salad I eat everyday with my main and thus ends up within my normal < 6.0 2 hour reading. Total carbs for the meal was 40g in the roast INCLUDING the potatoes + 15g in the fruit salad so 55g in all. The 3 roast pots pieces weighed in at 75g so 25g more than my normal "comfort zone" for starchy carbs.

Fasting at start was 4.8, at 60 mins I was 9.8, at 2 hours I was 8.8

Sister-in-law: Type 2 for a few years takes same meds had exactly the same meal except she had 5 pieces roast pots equating t 125g of roast spuds

Fasting at start was 7.1 at 2 hours was 7.5 :mrgreen: (couldn't do her at 60 mins cos she went out)

See what I mean Grazer don't want to ***** at you as you know I think you're a great guy but - told you so...

I ate the meal then had to be constantly prodded by the wife to keep awake, I feel angry, depressed, blobby fat and stupid and the Met is saying :***:

Have taken evasive measures which for me is 2 pints of diet coke and for a nice hot bath...

 

[Unbeliever]

Sorry you had to have this experience xyzzy bu not surprised.! It is the exception rather than the rule to meet any nurse who is prepared to see you as an individual. As AMBrennan points out she is following NICE gudelines so you will get nowhere if you complain or at best be referred to someone else who will tell you exactly tthe same thing. What can you do? You can hardly demand to see someone willing to ignore the guidelines issued to them. Unless and until the NHS reconsider the way diabetes is treated
there is little we can do/ Therefore we have to look after ourselves. full free and frank discussions are not on the agenda for most of us so we have to do the best we can. I have no problem with rejecting most of the medical advice I have been given regarding diabetes.. In fact I regret I did not do so earlier. I was encouraged by a specialist diabetes GP to take rosiglitazone against my better judgement. This caused my macular oedema. They then put me on glimepiride which casused me to put on weight for the first time in my life which only served to make my levels rise and the retinopahy to worsen. My present diabetes Specialist Nurse told me I MUST take pioglitazone which her employers say should not be given to sufferers from macular oedema - because it will probably blind them.

In fact I am now glad of my eye complications because my opthalmologist took a hand and had me referrred to the consultat diabetologist. he gave me sitagliptin. The diabetes specialist nurse could have done so but preferred the drug which would have blinded me despite my own reservations.
The point is that we would love to be able to trust our HCPs In most cases it is not possible .

I agree with Patch about the probable effects of insulin. It may not happen that way for everyone but I am convinced it would for me because of the effects of the glimepiride The hospital advised me to try sitagliptin first and it worked for me.
I have been taking it for 18 months and it is still working well . Perhaps you could consider Viv's advice re your diet and waiting a while?
If you still feeel sitaglipin would help then I would do whatever it takes to have it prescribed. You tried to get it in an above-board sort way . It didnt work. As things are. a few stratagems are quie allowable - indeed essential If it doesnt work you can always stop it. It kicks in quickly ,. . Most of the medication is guesswork anyhow.

I dohope you are not discouraged by this experience. you have been doing really well and not just for yourself but by encouraging others,
I know this atitude you encountered is very depressing I feel the same Most of these people may as well not be there for all the use they are.That is why most of us are here.

 

[AMBrennan]

As AMBrennan points out she is following NICE gudelines so you will get nowhere if you complain or at best be referred to someone else who will tell you exactly tthe same thing.

Actually, my point was that the guideline doesn't really cover this situation, and I think that it would be possible to make a good case to get extra meds based on them:

If you can only eat very small portions of carbs, and don't want to or cannot eat portions that small then control with diet and current medication isn't working; requiring the patient to have elevated blood glucose for a year to get a high-enough HbA1c just because this is the only case specifically mentioned in the guideline is dumb at best.

I'm starting to see why you are having doubts in the NHS...

 

[smidge]

Just a small point:-

same position as smidge found himself

Smidge is a girl, and I'm sure a very pretty one! :wave:

Oh b*****ks I've only gone a done it AGAIN! Did it to Phoenix last week. I

:lol: :lol: :lol: - you had a 50/50 chance - wouldn't bother with the lottery right now if i were you :lol: :lol: :lol:

Seriously, I've just read your latest post, and those spikes are more like LADA than Type 2. I'd be pressing for the tests if I were you. It makes me so mad that they refuse the tests - the GAD test costs less than £200 according to the Registrar that finally persuaded the consultant I should have them done. I never did have the c-peptide test, but the positive GAD test was enough for my diagnosis. If I'd known how relatively little it costs I would have offered to pay myself months earlier - the way they went on you'd have thought it was £thousands :roll: Trouble is, if it's negative, it's inconclusive. Honestly, my fasting and HbA1c was really good, but the post meal spikes were getting worse and worse and i was able to eat less and less. The weight was falling off and i was about 6.5 stone -it was a nightmare. I was having to eat fewer and fewer carbs to keep the spikes in single figures. The problem is that low-carbing confuses them with LADA because it keeps your levels down and masks the underlying extent of the diabetes. I don't know what to suggest except try to get to see someone with a clue. You might well turn out to be a particulaly carb-sensitive type 2, but you deserve the tests and a proper diagnosis.

Smidge

 

[smidge]

Just a small point:-
Smidge is a girl, and I'm sure a very pretty one! :wave:

Aww thanks Grazer - you wouldn't have said that if you'd seen me ranting like Basil Fawlty at the nurse and doctors :lol:

Smidge

 

[Daibell]

I think the DSN shows her limited knowledge of drugs by saying Sitagliptin wouldn't work. She may even be right (unlikely) but how does she know? Sitagliptin works by suppressing an enzyme that the body produces to halt insulin production some time after eating. It therefore extends insulin production and hence does reduce spikes. Whilst it would have no effect on your current BG levels it would if you increased your carbs and the BG went up. I had a similar row with my diabetes GP last year when I said I was having to 'starve myself' to keep my BG down below double figures. I was told to eat a normal healthy diet! Obviously no understanding of the relationship between diet and diabetes; worrying. At least I did get Sitagliptin when insulin was refused and I refused a glitazone due to it's dangerous side effects.

 

[xyzzy]

Thanks for all the comments 4 hour reading back to 5.2 so feeling happier.

The more I think on this and it has been eating at me all day I've decided what has pee'd me off the most is actually two quite simple things. They are both quite selfish though.

Never once did she say "you've done really well to get your BS sugars under control. I can see that on Dec 8th they were in the 20's and now for the last couple of weeks they're all (mostly) under 6.0." That took a lot of b****y effort on my part.

...and likewise never once did she say "Well done I can see you were just over 17st with a BMI of 31 and now I see you are 14st 12lbs with a BMI of 26.8." That also took a lot of work, in fact she wants me to put weight on!

My wife's comment on tonight's post meal readings (as a "mended" prediabetic we follow the same diet but she does eat a little more carbs each day). "Well I can't cook just one roast potato that's totally pointless, if we do a roast again we'll just have more veg". and she's right it's a totally pointless exercise and hence when I eat said roast I won't spike.

anyway rant over. Will take some time to consider the next move, I find with these kind of things you need to analyse what to do with a cool head.

 

[iainmay]

Thanks for all the comments 4 hour reading back to 5.2 so feeling happier.

The more I think on this and it has been eating at me all day I've decided what has pee'd me off the most is actually two quite simple things. They are both quite selfish though.

Never once did she say "you've done really well to get your BS sugars under control. I can see that on Dec 8th they were in the 20's and now for the last couple of weeks they're all (mostly) under 6.0." That took a lot of b****y effort on my part.

...and likewise never once did she say "Well done I can see you were just over 17st with a BMI of 31 and now I see you are 14st 12lbs with a BMI of 26.8." That also took a lot of work, in fact she wants me to put weight on!

My wife's comment on tonight's post meal readings (as a "mended" prediabetic we follow the same diet but she does eat a little more carbs each day). "Well I can't cook just one roast potato that's totally pointless, if we do a roast again we'll just have more veg". and she's right it's a totally pointless exercise and hence when I eat said roast I won't spike.

anyway rant over. Will take some time to consider the next move, I find with these kind of things you need to analyse what to do with a cool head.

Dude, that's a ****ing result end of. The fact that the nurse cant compliment you for that and tell you your doing a great job is not a slight on you, its a slight on her for not getting the position shes in. We all work to get results and when were slighted for 3 months solid perseverance we all hurt. Find another practice, dont mess about.

 

[didie]

Just do what is working for you xyzzy. You're doing really well. The diabetic nurse at our practice did the same to me the last time I saw her. I'd lost over 2 stone at the time and my levels were down and I was so pleased with myself and she was so dour and really knocked the stuffing out of me. When she said she didn't need to see me again I was delighted as her attitude is so negative. It is as if she expects her patients to fail. Maybe she has a lot of non-compliant patients over the years and expects everyone to fail. The doctor on the other hand who has an interest in diabetes has been fantastic and supportive all along the line. I really can't thank her enough for her support. I felt the nurse saw me as just a diabetic, but the doctor sees me as a person with diabetes.

 

[viviennem]

Yu are doing really well, xyzzy, and she should have said so. If you really want to go for the other tests, you could remind someone (as per the comment on the FIle on 4 programme) that the practice is paid £2000 pa for you being registered as a diabetic, and it's supposed to be spent on YOU! :wink:

Viv 8)

 

[Grazer]

the practice is paid £2000 pa for you being registered as a diabetic,

Is that right??

 

[Sirzy]

"the practice is paid £2000 pa for you being registered as a diabetic"

If that's true, surely there's absolutely no excuse for refusing NIDD's one or two pots of test strips a month! :evil:

 

[xyzzy]

that the practice is paid £2000 pa for you being registered as a diabetic, and it's supposed to be spent on YOU!

Thanks Viv

That's a really powerful piece of info to have at one's disposal.

I'm feeling a lot happier again this morning and have regrouped and got my head back around things.

I've decided rather than worry about all of this too much I'll do as you and Patch suggest which is effectively to accept what my carb limitations currently appear to be. I'll be therefore keeping to much to the same diet that I've found works for me and then gradually see as time progresses if my carb tolerance is increasing or decreasing. On the levels I'm eating my BG's are nicely stable and still slowly improving over time.

The other piece of advice I saw the other day came from Hana and it really does sum up my attitude to my future life as well.

i aim to be about 4.2 fasting. I do this by eating very low carb and I believe it's the right place to be. I've been doing this for years and although my fasting sometimes creeps up to almost 5, I knock it back down. My intention is to keep my Bg at a non-diabetic level and i do so most of the time. i eat to my meter too and haven't seen a 7 since i don't know when and that's the way I'll stay with my eyesight and my feet and kidneys all working properly.

The only change I would make to what Hana said is in my case would be to change "very low carb" to "what works for me" The rest of her statement I believe in - 100%.

As you suggested I'll keep trying a wider and wider range of foods but just avoid all but the very small quantities of starchy carbs I can tolerate as they are the ones that do for me. I don't see that as a problem, done it for 10 weeks now and I don't miss any of them that much any more. I already know I have a lot higher tolerance to things like fruit etc.

I will give the the surgery another try but this time will make an appointment to see our supposed diabetic expert gp (if he ever returns) rather than the practice nurse or nurse nightshade as I'll now forever call her. I will do this in a few weeks time once I get the next HbA1c result and have lost a few more pounds. If I still get nowhere with getting tested for LADA I will then go happily "mental" as some posters have suggested and will be doing so from a position of strength. Play the long game etc.

 

[angieG]

"....and likewise never once did she say "Well done I can see you were just over 17st with a BMI of 31 and now I see you are 14st 12lbs with a BMI of 26.8." That also took a lot of work, in fact she wants me to put weight on!."

xyzzy,
Are there any NICE guidelines for target weights?
Just wondered as 26.8 is over the 'supposed healthy range' and into the' overweight' area isn't it. Surely then she is wrong for encouraging you to go further into the 'supposedly unhealthy overweight' zone!! Considering this diabetes is due to us all getting fat etc etc blah blah (rubbish as a lot of us on here know) surely they shouldn't be encouraging weight gain!! :shock:
Just a thought
Angie

 

[xyzzy]

"....and likewise never once did she say "Well done I can see you were just over 17st with a BMI of 31 and now I see you are 14st 12lbs with a BMI of 26.8." That also took a lot of work, in fact she wants me to put weight on!."

xyzzy,
Are there any NICE guidelines for target weights?
Just wondered as 26.8 is over the 'supposed healthy range' and into the' overweight' area isn't it. Surely then she is wrong for encouraging you to go further into the 'supposedly unhealthy overweight' zone!! Considering this diabetes is due to us all getting fat etc etc blah blah (rubbish as a lot of us on here know) surely they shouldn't be encouraging weight gain!! :shock:
Just a thought
Angie

Yes my next weight target is to get under 25 so I get into the "normal" range but to Nurse Nightshade the 200g of carbs a day was a far more important target apparently.

Not sure if NICE specify a target BMI but the practice nurse (not nightshade) measured me with a waist measurement tape a few weeks ago and told me I still had a bit to go cos I was still about halfway into the orange section of the tape. The Swedish heath service guide I work to certainly does say 25 is the Max.

On the waist tape I think Phoenix posted a link a while back that showed the relationship between waist measurement as a predictor of diabetes. I was a bit pee'd off as it's not measured where you expect it, for example I am now in 34" jeans but they measure around your fastest bit which is still a bit more for me!