The 6 Month Panic.........

[mmackay20040]

Hi, I've been a T1 for coming on 17 years now. My HbA1c at worst was 14.1%, at best was 8.0%. Needless to say, my Diabetic Team are a nightmare and I go to clinics every 6 months. I get myself in such a state about them for over a week before my clinic date. Anyway, my next clinic is on Wednesday (quite aptly April Fools Day). I've been trying to improve things but between night fitting, fear of upping doses for fear of MORE fitting and various other things, I've got a feeling this one will be no different.
I go to the clinics, wait in the waiting room for a minimum 90 mins. Get seen for maybe 5mins max and in that 5 mins they tell me how overweight I am, how awful my results are and how disappointed they are in me. :cry: There's no word of encouragement, no word of ho, although my HbA1c is still high, it's better than it has been. There's no advice on how to improve etc etc. I just can't help but leave feeling that I'm on my own and feel very down about the whole thing. Which in turn makes me wonder why I bother trying so hard to then only be criticised?
I've cut my carbs right down in the last 2 weeks and there's been a huge difference in my readings. But I gather from other posts that I shouldn't broadcast this to my Diabetic Team?! Anyway, as a result, I've lost about 8lbs. Which I'm happy at. It's a good start.
Anyway, just thought I'd write this and hopefully get some support from all the fellow T1's out there..... I'd really appreciate any advice/experiences/thoughts you could offer.

Marie xx

 

[cugila]

Hi Marie.

It's not just T1's who will give you support Marie - us T2's have hearts as well. :lol:

I see you say you attend clinics - are these GP/Practice Nurse run by any chance ?
In my experience most are useless. I prefer a referral to an Endocrinologist who can deal with you far better than any (un)enthusiastic amateurs !!

Glad to see you have picked up on the dietary advice around here. You seem to have found something that is obviously working for you. Well done !!

Hope things get better for you.

Ken

 

[kegstore]

Marie the reason you try so hard is because you care what happens to you. Your practice (?) have targets to meet so they are less focused on the individual. You've tried things "their" way with little success, but may have stumbled on something that does work for you, so take encouragement in that. Finding what works for you is so important and well-documented all over this forum, and evidence-based discovery is hard to argue with, so you may be OK at your review. But you also may just be dealing with Neanderthals and need to be prepared for that too! All the best and let us know how you get on. Jo

PS My last HbA1C was one of my worst ever, but I'm always looking to try new ways of improving my situation. Make sure you do too.

 

[jopar]

Hi mmackay20040

Firstly welcome to the forum, also Wednesday must be a popular day for diabetic clinics as I’m also seeing my consultant but at the other end of the country lol

Some questions

What sort of regime to you use to control, as I know that 17 years ago the two jabs a day was still very much in favour against the basal/bolus (4 injections)… Along side of not having a exchange system of carbs to work form, but the hospital adjusting your insulin to meet your normal food intake…

Have you ever been on a carb counting cause like DAFNE (some hospitals do there own versions)? As this will give you very good grounding, in how to work with carbs and your insulin… As well as all the other things that can have affect on our daily control…

Another one that we tend to become lax about, if our dairies that we keep, the better picture built the easier it is not only for the diabetic team but for yourself to see what is going on, and what is effecting what in control…

Having a dairy that has a list of date, times and BG results, is very difficult to work from, but one that contains, day, date, time, meal BG and then a comment, like stressed as the cat got run over, feeling under the weather, 4 miles walk decorating etc… Helps to build a very readable picture, I know that I can’t remember looking at a post-meal BG for a date last week what I had eaten or how much to get the BG out come I did..

And for this Wednesday I would write a list of question/concerns that you would like answered, this way you will not forget what you want, and they will have to work through and answer items on your list, remember to take pen and paper so that you can note down what they are saying for future reference, and once they’ve got to realise that you are very serious about sorting out you control and losing weight I suspect they will be more than happy to give you a bit of extra time…

 

[totsy]

hya and welcome,
im in total agreeance with jopar above,dont feel alone and any other questions plz ask...

 

[Dennis]

I've cut my carbs right down in the last 2 weeks and there's been a huge difference in my readings. But I gather from other posts that I shouldn't broadcast this to my Diabetic Team?! Anyway, as a result, I've lost about 8lbs. Which I'm happy at. It's a good start.

Hi Marie,

I'm also not a type 1 but just wanted to offer a few words of support. So what they told you to do didn't work, but you have done your own research and found something that does. That's great and you should be applauded, but you almost certainly won't be by your medical team. It's only human nature to dislike being told you were wrong, so don't expect any thanks from your medical team if you do tell them. They will just take it as personal criticism of them. If pressed you could always just say you have reduced your carbs a bit - just don't say how big a bit and they shouldn't be offended!

 

[chocoholic]

Hi Marie,
My medical team just tell me to up the carbs when I see them but I tried it their way and prefer my mod. carb. levels and better readings and minimal insulin. I've just had a stir-fry for dinner (made with home-made broth), followed by a slice of Fergus's cake, sandwiched together with strawberries and cream. I know my readings will be around 5 now all evening,so frankly if my DSN doesn't like me doing what I do....tough! :lol:
You're doing a great job and you KNOW what is right for your body. It's hard when you don't get encouragement at these visits but do stick with what you are doing. If reducing the carbs. works for you, your body will thank you for it.
All the best, choccie.

 

[mmackay20040]

Hi everyone, thanks so much for your replies. Yes I'm finding a massive difference in my bm's since cutting my carb intake right back not to mention that my daily totals of insulin have more than halfed. I'm just struggling to see the point in bothering with these clinics. They are run at the hospital by the Diabetes Consultant, Diabetic Specialist Nurse and Dietician. The hospital put me on a pump and I then moved. As a result, I'm now in a different Health Board so I have to take a day off work, fly back to the old Hospital to attend these clinics and I get no pump support where I am as no one here is trained in using them. All gets a bit confusing, sorry!
Anyway, I'm just about to have my dinner. Grilled pork and steamed carrots with 2 steamed potatoes. I'm really dreading wednesday now. Just wish it was over and done with! :cry:

M xxx

 

[Katharine]

Most diabetics get a poor deal at the hospital clinics. The staff teach the wrong diet and the insulin techniques taught are completely inadequate.

The main thing is that you have had your eyes opened to the change that is entirely within your reach.

You need to continue to go to the clinic so that:

1. Complications can be monitored and treated.
2. You get informed if any new drugs or devices could be suitable for you.

The day to day management of diabetes is a lonely job, but that's why we are here.

Your hbaic may not be spectacular this year, but cut the carbs and the insulin, and it will knock em dead next six months.

 

[mmackay20040]

HI, thanks for your replies. I started out at age 6 with 2 injections a day of 30/70 mix which gradually went up to 6 injections a day of bolus and basal insulins. I'm now on a pump and have been for coming on 3 years. Was put on the pump as a result of awful nightime fitting in my sleep and not waking up or being aware of them (and waking up in a different room, black and bloue or even worse, in a different building!). Anyway, I've tried asking them for help but I don't get anywhere. I just find them really unhelpful and short. Of course I want better control and of course I want to lose weight and feel better in myself but I just feel that it's so easy for them to tell you what you should be judged on the 'textbook' diabetic. I'd love to see them have a day in our shoes!!!
I admit I did lose the will to bother trying for a while. When I was 15, my GP tld me that I'd be dead by 16. I went back after I was 16 and he said definately by 21. I'm turning 23 this year so if for no other reason than to prove that horrible %&^$"£! wrong, I really, REALLY want to get on my feet and be healthy.
I just wish I knew where to start.........
Good luck with your clinic on Wednesday. I hope you get the results and advice your looking for.

Marie xxx

 

[mmackay20040]

Thank you. I know all about carb counting etc as I'm on a pump. The only thing is now that they won't be looking at alternative treatments/devices for me as the only reason I have my clinics with them is because they are paying for the pump.... But they aren't my health board so in a way, I'm not their responsibility. But they're the only Diabetes Team I see?!
PS, I'm sorry about posting before about 'fellow T1's'. I didn't mean to offend anyone and I certainly appreciate everyone here's advice.
M xxx

 

[wiflib]

.....and, of course, it's entirely up to you if you wish to attend these appointments. If they are failing to help or support you in any why, why go? You are not there to make them happy, they serve you and if they don't, kick up a stink or ask for a referral to another clinic.

Sounds like you are doing a fantastic job of taking control of your diabetes. Keep at it and if you decide to go back, thumb your nose at them.

wiflib

 

[sugarless sue]

Topics merged and edited for continuity.

 

[mmackay20040]

Thanks very much for your encouragement. I can't not attend the clinics coz then tey'll take the pump off me. If I don't meet the targets soon, they'll take it off me anyway so it'll be back to lovely fitting!!! It's a catch 22........

 

[chocoholic]

I think it's important to continue attending the clinic. Katherine gives good reasons above but also when you have gained good control over a period of time and your readings plummet (which they surely will if you reduce the carbs as you have been doing) I'm hopeful that your medical team will sit up and wonder what changed and question what you did. It's one of things that keeps me motivated to attend clinics. If diabetic after diabetic achieves good levels by carb. reduction, eventually the medical lot will have to sit up and take us seriously and ditch this 'eat starchy carbs with every meal' advice.

 

[kegstore]

Marie, do take on board everything that's been said, there's some good stuff there! I've been on a pump for 4 years now and it was not easy at first, as it's definitely a different way of thinking, but I found it worth the struggle once levels start improving, and I would not go back to MDI willingly. But I understand you're struggling too. I hope your clinical team would not take away your pump - there's little they could do with it if they did, as most manufacturers don't do refunds. I think if you can show them that you have tried following their guidance and it just doesn't work, they "might" listen to you, but I admit I'm ever the optimist! Cheers, Jo

PS just thought - jopar mentioned the importance of keeping a good diary, I totally agree. If you need one, I have a great little Excel spreadsheet that sits on a Palm PDA and I couldn't be without. It's a good reference for your clinical team, and automatically calculates any correction and meal boluses you need. Shout if you want a copy.

 

[sugarybibs]

Hi Mmackay,I too am type 1 have been for 39 years now.Went to my diabetes clini yesterday and was all made up going.I had wrote all my blood sugars down lost 1stone in weight since october.I am now 10stone 3 and am 5foot five.Cut my novorapid down to between 4 and 6 depending on my carbs (which i cut down as well)after going on the clinics carb counting course.my lantus is 12 at nighttime.Anyway this doc says"your control is really bad the dose of insulin you are on is far to low that is usually what we start newly diagnosed people on!I was on a lot higher and higher carbs but the diabetes nurse in same clinic told me if i wanted to loose weight try this and i did and he said i should not!!Anyway my hba1c was 9.0 the highest its eer been.I wouldnt mind i was really upset and nearly crying and then he said well you look really well and are a good weight but we will get nurses to sort you out.I am not being funny but i know more than them!!!then he started telling me about complications!!i said i dont want to know i already knew about this from the age of 17!im now in my fifties.Every other time ive been to clinic ive been told i am doing really well.I wouldnt mind but i take really good care of myself test all the time dont smoke have a really good diet and take loads of exercise.I felt like i was a schoolkid getting told off.And that is what happens to us you wait in clinic for hours get weighed wee tests blood tests and 5mins with doctor who in my opinion doesnt know much about diabetes.I think the only people who really know are us diabetics ourselves.

 

[chocoholic]

I feel for you, sugarybibs. I'm on even lower doses of insulin than you and I got pretty much the same response from my DSN. They have no idea how hard we work trying to keep good control and then it's like a slap in the face when you go for an appointment and feel like you're getting 'told off'.
It sounds to me as though you are doing all the right things. Hba1c does seem a bit high but I can't explain that one for you.Perhaps it's a temporary blip. Stick with the carb. reduction and exercise though. It WILL pay dividends in the end and WE know how hard you are trying.
All the best, Choccie.

 

[Jen&Khaleb]

Hi there,
I am a parent and have started feeling anxious about the 3 month clinic appointment also. I suppose this is because my last one was such an improvement (8.7 down to 7.0) and this last month my son has been ill for at least 3 weeks. He was really high while he was sick and then I've had a few days with multiple minor hypos. Maybe I will forget to take his book along with me and hope for the best. I accept that I couldn't do any better but do the medical staff ... I hope so. Sometimes I think they just don't understand what goes on at home and how difficult it can be to try and stay in safe levels. I've hardly had any sleep and am completely shattered. My son had a bsl of 22 at 10 pm last night and I left him like that to get some sleep. Was a bit of shock to find him at 5 this morning. Do other diabetics find that after illness you get some scary lows? I have the opinion that the body is restocking the stores lost during the illness. If I don't hear from someone I'll start another topic on this one.
Cheers Jen

 

[mmackay20040]

Well, the clinic is over for another 6 months. It went surprisingly well with NO negative comments from my consultant :shock: :shock: :shock:
My HbA1c was 8.2 but she didn't seemed quite happy with that at the moment. It was a joy leaving the clinic tear-free and not feeling useless and having failed.
I completely agree with all your posts on the 'telling off'' of the clinic. It's been one of my pet-hates for many, many years!!! It's so easy to judge based on the 'textbook diabetic' but if they could only live a day/week in our shoes then they would see that it's not all clear-cut.
With regard to your son, I find that after being ill, I'll have quite a few hypos in the sort of recovery of it. I'm not sure what causes it..... But I wouldn't say it's anything to worry about. As for the high's while ill affecting the HbA1c, over a short period of time, I wouldn't imagine them making a huge difference to the result.
How are you all doing today?

Marie xxx