dr's driving me bonkers

Hi Megan

I don't understand why you are annoyed that your doctor wants a different format record or why you should be annoyed that he wants to check the carb counting....

I personally thought it was fantastic when I used to email my GP every week with my log records that included all my carb counting, insulin intake, hypo's etc, as it gave him chance to have a really good look at what I was doing and how everything was including my carb ratio's and levels after food etc...I really miss this fantastic rapport that I had with my old GP.

Perhaps the positive that may come from this, is that your old diabetic doctor may agree to some changes that will help.

With the psych nurse as well, were you asked to make another appointment or was it totally left open, or will he be writing to your GP? If the psych nurse was writing a lot down, then there must have been notes that he would have been writing about to talk about..possibly at further appointments or with notes say to go back to GP...I think you are taking quite a negative outlook to the appointments today and don't reaally appreciate why you want to complain to be quite honest.....from your post I don't see why you feel so disapponted with the treatment that you received today.

Going back to the psych nurse, when the nurse said, 'i'll be in touch' didn't you ask what the next step was, what happens now, what did they think? etc etc...I personally would never leave an appointment without knowing what the next step was....

Hi Megan,
I'm so sorry you've had such a disappointing time today I'd like to say I'm surprised but I went through the same load of cr*p for the best part of 4 yrs, and still come accross the disbelieving attitude regarding the analogue/ animal insulin issue. Like you, it was considerd a phsychiatric problem and my diabetes consultant's answer was anti-depressants :evil:
I can't remember if you've already contacted the IDDT, but if you haven't please give them a ring tomorrow while you're still fired up. I bet none of your diabetes team are taking insulin themselves, which begs the question why would they "poo poo" what other insulin users have experienced and know to be the truth. There is enough to read on the internet about it and medical professionals have access to far more info than we do. Unfortunately they don't always have our best interests at heart.
When my son who was 11 at the time, relapsed with Ewing's Sarcoma in 2003, we were told categorically that there would be no further treatment and he would die within the year. My husband, who's a clinical scientist, had access to info and discovered a chemo regime had been tested in the USA and been successful with some patients. However we saw 2 pediatric cancer specialist in London who claimed there was no treatment option. When my husband presented the information he'd discovered to my son's onconlogist, we got the impression she was already aware of it :evil: We pushed for him to undergo the harsh treatment, which meant he was in hospital for over 4 weeks and tube fed for 3 months. We knew that the toxicity of the treatment might kill him, and had a limited chance of curing him, but at that point we felt it was worth a chance.

Thank god for my husband's knowledge, if we'd left it up to the doctors Matt would not be here now. He turned 19 in February, and is in surprisingly good health. It left a bitter taste in our mouths regarding the doctor who'd treated him since diagnosis, but was ready to give up on him.

I'm sorry I've veered off track a bit, but my point applies to both your case and my son- doctors are not God, they don't always make the best or right choices. If you feel strongly enough about something suchas changing your insulin and your reasons for it, your doctor and diabetes team should have the decency to offer you the choice. They certainly have no right to refuse you on financial grounds, their "poo poo-ing" is simply down to ignorance.
You definately deserve a HUGE pat on the back for having to put up with such cr*p, and don't be beaten!

Speak to Jenny at the IDDT, then print of as much info to present to your doctor. Make another appointment asap, and present your case to him clearly and concisely. Make it clear you want to try another insulin and if he refuses ask him for a reason why. Stick to your guns and with any luck he'll take you seriously.

Wish I could offer more help Megan, you must be well pxxxed off
Jus x

ps as for psychiatric care!!!- my son was referred to our local "care" team and I use the term loosely. They forgot about him for 6 months despite promising a referral to a psychologist. They NEVER answer their phone, and don't reply to ansaphone messages unless a threat to complain to my GP is included. If my son was left to deal with them, which as a 19 yr old adult, he should be expected to do, he'd have probably given up. Fortunately it is me who is left tearing my hair out and saddened that someone as vulnerable as my son should be treated so shoddily. :evil:

megan, I don't have any useful advice but I just wanted to say how sorry I am you are having such a struggle and I think you are perfectly right to be frustrated and angry at what you've had to put up with.
The stuff the psych nurse said just makes me soooo angry... basically calling you a liar based on entirely irrelevant experience. You are very patient, I would have walked out at that point I think.

Sorry Megan to hear your full story.

Is there nothing that can be done to change practices, hospitals or anything at all?

I too have had cr*p time with GP, and I only get treated well by him, if my husband attends-even if my husband says nothing at ll, the GP has a completely different attitiude to me!!! I know you have had your husband there, but there has to be a way around the problems that you are expereincing with your health professionals. I don't know what they could be tho'!!

Megan

If you are using the bolus/basal regime, how are you going about calculating your insulin for the carb that you eat?

(also megan, this thread reminded me of how useful your experiences are going to be on my advisory group for my study... I sent you a PM about it but I don't think you've PM'd back with your email. Would be great to have you on board if you are still interested. Am thinking of sending some stuff round to the group soon.

Snodger)

megan said:

well saw the psyc nurse today.....not sure what to say really....

he was mainly writing info about me....he asked how many blood tests i do a day and when i said 4 - 6...he wanted to see my fingers. he then said that he works with drug addicts and if i did that many tests it would show more on my fingers!

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Your psyc nurse might benefit from a course in physiology so he is able to tell the difference between a simple finger prick test and injecting heroin into a vein, what an idiot.

megan said:

oh thanks guys....hearing from you puts a smile on my face...

the bolus/basal regime i use is

24 basal morning and 24 at night

1.5u/10g cho for all 3 meals and if needed then the same or 1u/10g for a snack depending on what it is...

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Megan

You appear to be using the same insulin to carb ratio for all your meals. If you have done DAFNE hasn't anyone explained to you about adjusting the ratios up or down according to what your bg levels are and on how much carb you eat? Testing your bg levels 4-6 times a day is not going to give you wonderfully good control. The testing needs to be done 6 times a day, writing all your bg results down, how much carb you eat and adjusting your ratios up or down so that when you test your bg levels they will be somewhere between 5-7mmol before you eat a main meal, then 7-10mmol 2 hours later. If bg level is about 7mmol 2hrs after eating you will probably need to eat a small snack but if it is on 8-10mmol you can leave yourself go for another 2hrs without eating although you will need to be on the lookout just in case you find yourself going low 30mins before you are due to eat a main meal. Unfortunately no one can actually tell you what your exact ratios need to be, you've got to work them out for yourself by testing etc

megan said:

hi so sorry i didn't get back to this sooner...have PM you now and look forward to hearing from you

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I can't see your PM.... ?? :?
Is there something wrong with the PM system? It seems to be doing odd things.

Snodger said:

megan said:

hi so sorry i didn't get back to this sooner...have PM you now and look forward to hearing from you

Click to expand...

I can't see your PM.... ?? :?
Is there something wrong with the PM system? It seems to be doing odd things.

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The pm system is under the control of individual Members, as far as we are aware it is working fine. It does however, depend on what setting you put in to start with.......Member's can choose to not allow pm's if they wish. You will always get pm's from Monitor's or Admin.

Anybody who appears to have a problem can pm myself or Sue and we will try and help sort things out. If your pm system isn't working put a message on the board and we will respond.

Hello Megan,

Yes you have had some bad attitude from some medical professionals. I think I remember you saying once before that you're in one of the British isles and don't have the right to free health care, so you're stuck with them.

I see three paths to sorting this situation out. And all of them entail you stopping putting your life into the hands of others, no matter where or who they are, and taking control of the situation by yourself.

1. You are a DAFNE graduate, hence you are entitled to use the DAFNE website. Get in touch with your DAFNE coordinator, get your login details, sign up immediately, join the forum and get advice from the healthcare specialists in that part of the forum. Bypassing the locals and going straight to the experts.

2. You say your levels are high across the board. Thus, you are quite simply not injecting enough insulin. You have 3 main choices: increase basal, or increase bolus, or increase both. The way it looks to me, is you are already taking a lot of basal and the basal/bolus ratio is meant to be around 50/50 when you add up your total daily dose. Therefore, it seems to me, you're probably not injecting enough rapid acting insulin. As you know, from DAFNE, you change only one thing at a time, and when changing ratios you only go up half a unit at a time. So you leave the basal where it is and increase all 3 mealtime ratios by 0.5 for several days and see if the numbers start getting better. If yes, but you're still high across the board, well you go up another 0.5. Gradually you may find nuances in the times of day and you may find you need more in the morning, like many diabetics (I don't, so it's not everyone).

3. Factor in your hormonal fluctuations. You can't help it, but you have to be aware of it before you can deal with it. I had no idea about it but was advised strongly to note my periods in my DAFNE diary and there it was, clear as day: I needed more insulin in the week before, and I could have a big hypo on the first day. The last 2 months have seen me spend 3-4 days going into hypoland before righting myself again. OK, so I'll make plans for next month, simple. One lady at a DAFNE follow-up said she had to change everything every week due to her hormones. So that's the deal, you need to assess it all for 2-3 months then make appropriate adjustments the next time it's due. I now note when my period's due in the food diary so that I am ahead of the game and prepared for what's coming.

I'm no angel and haven't got a perfect hba1c but I can't fathom why you let yourself be dictated to by these people, which only increases your sense of anxiety, frustration and powerlessness. You need to take control.

Testing? The DAFNE rules are: test on waking, test before each insulin shot, test before bed, and test if you feel you might be hypo. If that's 4 times a day cos you only ate twice, then it's 4 times a day. if it's 10 times a day because you've eaten lots of times and thought you might be hypo, then it's 10 times a day. Maybe you can try to do one month with no snacks to cut out what I call the 'chaos factor' and try to leave a gap of 5-6hrs between each meal so that you get true readings before meals and can more clearly see what's happening.

Get out your DAFNE course manual and re-read absolutely everything. If you've lost it, you will get a copy on the website. You can also download the DAFNE food diaries there. You will be able to get direct answers from experts in the field on the forum, you can upload all your results to the site and get answers and essentially, you will be able to start taking more control for yourself whilst taking advice that you feel, crucially, you can trust.

Jeez, no wonder you're anxious and depressed with all those people telling you what to do with yourself!! So - it's time to dust off the cobwebs and start again, with you in charge. What do you want them to say or do for you - unless you think they're going to follow you round counting all your carbs and working out your insulin! (Well, I've offered my hand in marriage to anyone that will do that but it turns out it's my job.) Since they're obviously not helping - you help yourself. You can do it, of course you can. And yes, constantly high sugars lead to a higher chance of depression, I was demented at diagnosis and slipping back to an hba1c of 9% last year started affecting me again in that way; it took a few months of better control to shake it off. So you have to keep reminding yourself - you only feel like that until you get your sugars under control. And the person counting those carbs, and injecting that insulin, is not the doctors, it's not the psychiatric nurse, nor is it your husband - it's you, and you will gain control of your own sugar levels.

I hope you get somewhere - and just remember there's no point banging your head against that same brick wall, especially not when you could take more of the initiative. I hope I haven't sounded high-horsey because I'm trying to be encouraging. First thing tomorrow, get your DAFNE login details and find that manual - that's where it's all going to start going right for you! And force yourself to stop winding yourself up into knots about who said what about this that or the other - who cares, certainly not you, right? All it's doing is dragging you down. Next time you start thinking about that psych nurse or that Dr you just have to say - oh who cares. You know, they're well-meaning, and that's what you have to take away from it.

Take care of yourself,
Moonstone

Hi Megan,

I'm sure all the pills you're on aren't helping your sugar levels - when I was about to be diagnosed and it was really obvious what was wrong and I was really ill, I wanted to take painkillers and my type 1 manager - had it 30-odd yrs - told me that he reckons only paracetomol has no effect. So it will be good when you can come off the antidepressants. From what you've said I reckon your hba1c has to be about 9ish, which is where I started to feel depressed again.

As for the coil, I don't think it stops hormonal fluctuations as-is, despite stopping periods, unless you've got the merina coil which gives out hormones, and once again I understand they will affect blood sugars (in fact I won't have one because of that). Same for the pill. I should imagine it's still a factor, so keep a note anyway.

If you did DAFNE outside the UK I'm not sure they give you an automatic login but you can still sign up, so head over to dafneonline.co.uk and get in! And the sugars you're reporting are absolutely not the worst in the world, ok they're not the best, but they're not the worst either so once you get it down a touch for a couple of months you will in fact feel a lot better, I'm sure of it. I just wonder if you only need to increase your ratios by 0.5 for each meal to achieve much better results most of the time - you're really not that high. It might be worth injecting the same ratio for snacks for a while too, and as I say it might be a good idea while changing ratios to even skip snacks altogether for a few weeks. I did it, when I kept going too low - no snacks, and all my meals 6hrs apart. It gave me a much clearer picture. Eventually it became a routine. I think the solution to the issue is probably simpler than you think, and the Dr, diabetes nurse, psychiatric nurse et al can only give your the best advice they can manage, and I think they're confusing you just by being there. Well I know they are, because it's clear from your posts (you might not realise it). Smile sweetly at them, say yes Doctor, you're right, and go off and do what you need to do.

As for the animal insulin, it's obvious you're going to get nowhere until you can show you're in control of it all so when you get lower, get off the antidepressants, feel better, then go in armed with the right info from the IDDT and get the insulin change you want. Whatever reasons they're giving you for not having it, they're basing that on what they're seeing now and obviously trying to put you off, so although it seems counter-intuitive to you they clearly think they're doing the right thing and it's pointless trying to have that argument with them at the moment. Once you've turned a corner, they'll probably take you much more seriously. We're only diabetics, not salesmen, but sell yourself. Look at me, I've improved x, y and z; I've taken control of it and got my target hba1c three times in a row; I take advice from specialists such as professors on the DAFNE forum; I know what I'm talking about and doing and my next step is I want to try animal insulin and I accept that if it doesn't work for me I will go back to the other stuff but I want minimum 6 months on it in which to give it a good trial.

If they still won't be nice to you after that then God knows!!

Have a lovely day,
Moonstone.

I have fibromyalgia, and for me every single antidepressant or antidepressant/painkiller has actually lowered my need for insulin quite dramatically.

Fibromalgia sufferers rarely actually manage to get off antidepressants, as like mine (duloxitine)-it is antidepressant and pain killer.

Pain is known to have an effect on the needs of insulin.

Personally, I don't think that coming off all the antidepressants and medicines is a choice when you have fibromyalgia. Fibro is when your brain gives wrong signals due to an imbalance ot things like serotonin.

I am not a fibro expert, as I am still suffering with it, but now I actually have got a number of drugs that keep me good-ish, I am sticking with them, and working my way around them with the type 1 diabetes and the insulin pump.

Giving figures of 9-ish for feeling depression is a buit misleading, as depression is a big part of fibromyalgia and the way our brains operate. I have had hba1c of 6.7 and still feeling depressed- I could have a level of 5 and be far more depressed if I wasn't on my fibro medicines.

Finding the right medication for fibro is hard. GP's will try out cheaper drugs before the more expensive ones. I tried practically everything before my GP put me on duloxitine and ampitryptalene and my brain is now functioning, and my pain is improving.

Your diabetes is manageable, I would far rather give myself enough insulin to bring down my levels than worry about the amount I am having to give.....and what I am having to take etc.