Really annoyed!

[gilliwilli]

Hi
Just need to get my feelings out on the forum. Have been doing really well, or so I thought, for the past 3 months since being diagnosed with T2 in October. Have bought a monitor and test on a regular basis to make sure that I know what foods have what effect on my readings. Have managed to lose just over a stone too so have been very pleased with myself. This is all thanks to the wonderful support on this forum!!
Today I saw our practice nurse for my HBA1C blood test and thought I would be brave and ask about test strips on prescription. Well to say that I came out of the surgery furious is an understatement!! I was basically told that I shouldn't be testing as I didn't know what I was doing. That I should be eating loads of carbs even though my readings are really high when I do! And also that I should have a big bowl of porridge each morning even though my levels stay over 14 for hours after!!! It gets really frustrating when the so called experts don't or won't see that what works for one doesn't work for others.
Needless to say I didn't ask for any testing strips!!!
Sorry to rant on about this but I really do feel so fed up with NHS thinking as regards diabetes. I am trying to do diet and exercise route for as long as I can but today has made me feel like saying just give me the tablets.
Anyone else feel like this sometimes?

 

[Patch]

Yes. It is very common. Maybe we should start asking for a transcript of our appointmets, or even record them.

Then we could send a letter to the practice, repeating the "advice" (and I use that term loosely) and tell them what muppets they are!

 

[viviennem]

I'm not surprised you were annoyed! And we've all been brought up to be so respectful to HCPs - it's difficult to make your point firmly without seeming to be rude!

Do you keep a food-and-tests diary? Do it for a week, eating as you are now and testing as they recommend on here (fasting, pre-meals, 2 hrs post-meals and bedtime). Record your food intake and your readings.

Then maybe do a day eating as the nurse recommends, testing again as above, and record what happens to your readings. I shouldn't think one day will do much harm, but someone who knows more than me will say if I'm wrong!

Then go back to your practice nurse and/or doctor armed with your results, and make your case. You could do it when you go back for your HbA1c results, which should help to reinforce your argument

I feel I'm very lucky having a practice that issues meters and strips as a matter of course to all their diabetic patients. But I'm pretty sure I'm going to have trouble getting as many strips as I want, even so. The diabetic 'specialist' said test a couple of times a week. Ha! I haven't pushed it yet. I've bought extra test strips on ebay, checking the items with care for use-by dates etc. Most ebayers put that sort of info on. But when I go back to the surgery I shall ask how many they are prepared to issue.

The last batch I bought (my practice issues Freestyle Lite monitors) was less than half price.

Let us know how you go on!

V

 

[noblehead]

Write to the practice manager and state your reasons for needing to test your bg regularly, for example state that you need to test to keep your bg within the NICE guidelines for type 2's, and only by testing after eating food can you determine that your diet is appropriate in achieving this. Tell them you want to be pro-active in your diabetes management and do not want to be left with diabetes complications in 10/20 years time due to test strips being denied by your practice nurse. Good luck!

Nigel

 

[Patch]

Anybody think it's worth putting together a template letter, maybe include a template food diary/BG results diary?

We'd need a couple of sacrificaial lambs - someone that would be willing to follow the practices advice for a couple of weeks, and docuement heir results, and then follow their won eating plan, again, documenting the results.

At least that way the practice will get to see some actual, documented findings. I'm sure they'll find that a lot more difficult to dismiss than "anecdotal evidence"...

 

[gilliwilli]

Thanks so much for the replies. Knowing I'm not in this alone makes all the difference to me. some really good ideas and advice given. I'm a bit worried about following the nurses high carb advice but if the results were clear in black and white and it was just for a very short time then it would be worth doing this experiment. Also template for diary and readings sounds great. Thanks once again to all that replied. I feel more determined than ever to do it my way now!
Gill

 

[nirishdaisy]

Hi gilliwilli,

I hear you loud and clear. Congratulations on taking control of your diabetes. I was diagnosed around the same time as you and been on a low carb diet thanks to the advice on this forum. Been testing like yourself, but I am annoyed with myself. Like you I was with my GP yesterday and she says the same about testing strips. Test two or three times a week. It's a scary thought since I know the testing helps me keep things under control. I came away not having put my case to her and now will have to pluck up the courage to go back and do so. I've got my blood tests tomorrow, so maybe I'll make an appointment to go back for the results (instead of just ringing up) - takes weeks though to get an appointment with her. I was actually diagnosed 8 years ago with impaired glucose tolerance and was given testing strips to start off, once they were taken away things spiralled out of control and I suppose I'm wary of this happening again. As someone who has struggled with my weight all my adult life I'm so relieved something is actually helping me - and that's the low carb diet, not the low fat/low sugar the NHS told me to follow. This is all so frustrating. :cry:

 

[Sid Bonkers]

That I should be eating loads of carbs even though my readings are really high when I do! And also that I should have a big bowl of porridge each morning even though my levels stay over 14 for hours after!!!

I can understand your frustration Gill but did your practice nurse really use the words loads and big in relation to your portions? If they did then you need to complain in the strongest possible terms, if however they just suggested that porridge was a good breakfast and you should eat a balanced diet with some carbs with each meal then I don't see a problem.

You do need to ask for test strips though, quote the NICE recommended bg levels to your practice nurse and ask how you can possibly achieve them if you dont know what is happening after you eat.

Be firm but be polite.

 

[gilliwilli]

Thanks for the reply nirishdaisy! Knowing that there are many of us trying our very best to do what we feel is the correct way of dealing with our diabetes is a huge help to me. It just gets me mad that we also have to fight to get what we need in order to keep ourselves as healthy as possible and cost the NHS less in the long run.
Gill

 

[ebony321]

I think it's awful that many people are trying their best and taking iniative to take care of themselves and are treated this way and denied such a valuable tool in controlling diabetes

 

[cugila]

So you should be annoyed.......how would the Nurse react if YOU told HER she doesn't know what she is talking about !! :roll:

Had a very similar conversation this morning with a friend who was told by his GP that firstly a HbA1c of 7.5% was fine despite the fact this was a rise from a previous 6.5%.

He was also told that a fasting Bg level of 18 mmol/l was "Fine" ......... He too had been told that he doesn't need to test as he is 'only' a Type 2 and that it is complicated and only he (The GP) could read things from the results ?? The HbA1c in 6 mths was all they needed to know. I got him to test before his lunch.......19.1 mmol/l.

The guy has the first signs of Neuropathy, has Retinopathy and various other complications yet this supposed Health Care 'Professional' gave him advice which frankly will probably see him in an early grave ! I too was furious and gave him a list of questions for his GP who he is seeing again tomorrow after I told my pal that the advice was dangerous and just plain rubbish !

Why do some put up with this........because they trust and believe the HCP's who do not understand much about Diabetes.....but like to make out that they do. I would much rather they tell me, "I don't know about this, I will pass you on to someone who does." My GP did just that and that was the start of gaining control of my Diabetes along with help and advice from this Forum.

Get those posters promoting this Forum printed off. Leave at least one in every GP Practice and Library, Shop, Pub etc whenever you can. Spread the word whenever you can, advise any Diabetic you come across to visit here if only to 'lurk' and take advantage of the advice and support here.

viewtopic.php?f=1&t=9090&p=172096#p172096

 

[carty]

I used to think that this was a generation thing in my parents and grandparents day THE DOCTOR was a man to be obeyed he knew best and no one questioned that Then some people used to do research and ask questions and ask for second opinions now the nanny state is trying once again to get us all to just sit and take what we are told. I am a cynic and I also like to see the logic in things so when my GP said that the meds would lower my bgs and not the food I ate i recognised a no no right away .I asked what would happen if ate a diet of scotch pies and deep fried mars bars :mrgreen: I didnt get my test strips :!:
CAROL

 

[sugar2]

Hi,

Did you get your HBA1c results...or just have teh blood taken? I was wondering if/when you got your results...and they are good, you could use this as evidence that you do indeed need to test, and that you understand what to do with teh results??

Just a thought. I would have been livid!

 

[gilliwilli]

Thanks everyone for such positive responses. I will continue to do my very best with testing each day even if I have to fund this myself. I need to become more assertive when it comes to dealing with HCP's but that will only come about when I feel more in control of my diabetes and what is right for me. The more I read about other peoples situations I realise that I am not alone in my negative feelings towards the so called experts. It was just the blood test this morning so hoping that when the results come back I can be in a good position to ask for test strips.
I will promote this excellent forum whenever I can. It has literally changed my life!!
Many thanks
Gill

 

[trand]

I too was told to test twice a week, and given no other advice, as to what on earth was I meant to be testing for? yeah ok my blood is red :? I searched on here and asked questions. ok so I was abit forunate in that I did get strips from my gp, I have been on a practically no carb diet, 2slices of Burgen toast, thats all my carb intake, in 6mths my fasting bg has dropped from 8's to 5's, my 6mth blood test came back AbA1c at 6.3, and all I have done is follow advice on here, I even told my Gp about my diet and he agreed that it was a very good diet, so as all say, monitor your carbs, and insist on self testing .. good luck

 

[hanadr]

Gilliwilli
what your nurse is saying to you is what she's been taught tosay.
I would simply ask her to justify with evidence, the instructions she's giving you and then respond as you see fit, when she can't.
Hana

 

[sailorj]

Hi all,
I have been given the test strips from day 1 (7 weeks ago). The diabetic nurse advised me to monitor the bgs and not worry about the diet thing for the first week. This gave me a chance to see what happened on my normal diet. I then had a week monitoring Bgs and recording the carbs and I was seesawing all over the place with lots of 2hour post meal readings in the 9-10.5 range. I think now this was confusion over what did and did not have carbs in. At this point I was having 180-200 carbs a day. I'm diet controlled. The DN said this was good! The delays in the mail meant the carbs and cal book took 2 weeks to arrive!

Over Xmas I dropped this to 150-160 now I knew more (from this forum not the DN) but the bg's were 5.4-7.2 after breakfast and lunch but after dinner was still 8.5-10.4. The nurse & GP both said this was great and to test just a couple of times a week and I would not need meds but from reading comments on this site these appeared to be high still. I've not had any diet advice from HCPs.

After comments left from my previous messages I've been cutting down this week and managed 130 carbs for 3 days now and not felt hungry. Ok this is still a lot double some of you low carb contributors but monitoring the change in carbs and effect on Bgs is a greater incentive for me as from life expereince I keep to things better when I change gradually where as with dramatic changes the resolve fails quickly. The result .... well its been 6.5-6.9 after breakfast, 7.1-7.7 after a salad lunch and 7.1-7.7 after dinner (the biggest change). To me the consistency of readings must be good and the limits are within NICE guidelines. Am I right? Even so I'd like to hear others comments about the lastest readings. Should I aim to drop them further?

To me monitoring of both carbs and bgs had to go hand in hand otherwise i would not have seen the changes and got the incentive from it. I can't say I feel any different, I've only lost 4lbs in the last 7 weeks (need to loose 1.5 stone) but hubby says I have more energy and nag him more! In the last 7 weeks I've learnt a lot, changed the diet and gradually seen the benefit. Now have to stick with it and thats mostly thanks to all of you out there.

My novices' advice: monitor both even if your not encouraged to.

 

[cugila]

Well done sailorj.

Your latest readings are good. Well within the NICE guidelines. If you feel you want to go lower then that is your choice, what YOU feel comfortable with. I prefer my fasting levels to be around 5 mmol/l no lower as I strat to get hypo symptoms then, my body telling me not to go too low and what is known as hypo awareness.

My post prandial (post meal 2 hrs) readings I prefer to be 7 or less but never below 5. My choice and I feel fine with that. You will find others who wish to go to non-Diabetic numbers....their choice. I have had too many hypos to and do not feel good at those levels so I stay in my own 'comfort zone.'

Keep doing what you are, maybe reduce the carbs a little more and the weight may then start to drop again.

Whatever happens your renewed energy is a bonus (hubby might take a different view :wink: ) it's good that you are yet another who doesn't have to 'dive in at the deep end' just takes on board the advice and still quickly gets to that point where you are now a well controlled Diabetic.

 

[clearviews]

We have similar issues here with advice from GPs. Friend who not long ago was diagnosed "impaired" then given Metformin and cholesterol tablets was told the other day that his A1c was 6.8 and that that was a good result as he was under 7.0 ( this is what Australia aims for).
Friend was pleased because his doctor was pleased.
I asked him what his doctor had against diabetics to not be encouraging him to go for a lower or a non-diabetic result.
That is what I want for myself. He has little understanding of diabetes despite being a very intelligent person. He trusts his doctor knows what is best for him. His wife has recently started low carbing to lose weight and reduce her blood pressure as she knows from experience it works for her. I suspect he might inadvertantly be eating low carb before long too!
She has been enthusiastically posting me low carb recipes.
Alison

 

[sailorj]

Thanks Cuglia,
Good to feel it is OK so far, I keep thinking I'm getting neurotic but perhaps not!!