Time for another rant about my GP

[seanmarr]

Background

OK, I will begin this story last Wednesday, when I went to see Dr. B, a nice and competent GP at my local surgery, following a phone call to the diabetes nursing service who told me that I should go and see my GP or the Hospital with my problems, because they are only responsible for the titration of insulin doses (I think basically because I am not a textbook case). She has said to me that I need to stop testing my blood so often, because it wasn't doing me any good, because I wasn't adjusting my insulin doses or eating more every time I did one, in effect, the point she was trying to make to me was most of my blood glucose tests were pointless, beyond that they calmed my nerves about my diabetic control. Sometime I do extra bolus's if my BG is above 20, or it some stuff if its below 4, or lowish at night, but normally I just sleep off the highs, and a lot of the time I get so psycho when I'm low I forget to treat them and just wait to come round from them anyway, which is why I need to get it all sorted, because with control like mine you do just feel completely ****e.

Anyway, another major outcome is she felt I was being overanxious about my diabetic control and this was making it even worse, and I shouldn't be so worried about it, and that I should start taking tranquilizers. I am totally against taking any mind-bending drugs and do not consider myself to be psycho given that my control is absolutely appalling and despite trying everything I can I still cant get it under control. Eventually we agreed that I would got to counseling, but theres about a six month waiting list, so I would like to think that by the time I get there I wont need it. Until then, she gave me a list of contacts at the surgery that I should use if I get any problems and need some medical advice.

The Problem

So, anyway last night I had a bit of a problem with regards to being a low (but normal) blood sugar before I went to bed, and knowing that I have been going quite low before going to bed and then subsequently waking up hypo around 3am, so last night I decided to eat some more sugar/carbs when I tested at 21:48 and the reading came up as 5.4, and then wait an hour and test again (unless of course I fell asleep, which I didn't).

An hour later, I was still wide awake, did the test again and it was still 5.4, so I decided to repeat the treatment again. Just after this a film started on BBC1, which helped keep me awake another hour, so I did it again after another hour, and it was 4.3, so I repeated the same treatment again, and as the film was still on, I stayed awake for another hour, then tested again, and it came up 3.8. Now 3.8 in my book is a major hypo, so I decided to break open a bottle of Lucozade and down half the bottle. I meant to stay up another hour, but couldn't stay awake, so went to bed without actually eating any longer acting carbs or doing anything.

I woke up and tested this morning at 09:09, and the reading was 12.3. Now I felt that as Lucozade is fast acting sugar, there was a possibility that either a) it had lasted longer than I thought or b) I had liverdumped. As I felt really dizzy and slow upon waking up, I suspected the latter.

Given that I have woken up hypo several times over the last week I was thinking that my Levemir dose needs to be reduced, and given that I now want my 'healthcare team' to start looking after my diabetes for me and I want to make sure that they know everything I do, I went into the surgery and spoke with the receptionist, taking with me a sheet of my readings since the last time I went to the surgery, which actually showed a marginal improvement on my results, annotated it and she said she would get one of the people on the list to call me back with advice. This was about 1:30pm so I asked if they could call back after 2:30pm to make sure I had enough time to get home again.

The Phone Call

Anyway, I had a phone call back from Dr. K (not one of the people that was named on my piece of paper), and this is a very rough transcript of what was said

Hi, I'm Dr. K, you asked us to ring you after 2:30pm [reason I did that was to make sure I was at home when they rung to avoid them wasting their time and talking to an answerphone - he also didn't make sure that I am Sean] What seems to be the problem?

Well I nearly went hypo last night, I did a before bed test at 21:48 and it was down to 5.4. Now I know for many people this would be an excellent test result, but for me I felt that this was too low as I did not want to go hypo during the night. So I had 20g of Carbohydrate, roughly 15g of it as sugar, then went back to bed, and tried to go to sleep. I couldn't, so at 22:49, I did another test (sometimes if I cant get to sleep its because I'm hypo) and it showed up as 5.4 again. I decided to have another slice of cake, similarly sized, and went back to bed again and again I tried to get to sleep, have you got the sheet in front of you?

I have two brother who are IDD's and I know about the problems that can happen when you are obsessive compulsive about the condition. And you are obsessive compulsive. You need to stop testing all the time, and I've been through your notes, and you need to stop doing it, and you've been told this several times, and theres nothing wrong with your results, I think that you are fluctuating because of oscillatio-something (cant remember the exact phrase) and I cant really explain it over the phone but because you are testing so much you are making the problem look worse than it actually is.

But I do have problems, and the reason that I test my blood sugar so much is so I don't go hypo....

If you get symptoms of being hypo, then by all means test, but 3.8 is not hypo. If you haven't got hypo symptoms, you don't need to test, and you don't need to treat it.

Well ,I don't get symptoms when I go hypo, I just feel hypo or hyper all the time, and anyway being 3.8 before I go to bed is a bad idea anyway isn't it?

No, you wouldn't go hypo, and neither was 5.4 hypo, it is all natural to swing.

But in order to get a 3.8 result, I needed to eat three bits of cake?

Well you probably wouldn't have gone any lower anyway.

But surely the Maths of it is that I would have gone hypo, so I was right to correct it, so by your standards you are saying that I have not got a problem because I didn't go hypo, but I would have done had I not taken the action that I did [bearing in mind I originally went to bed at 9pm].

Well you didn't go hypo, and you didn't need to treat 5.4 in any case, you are just worrying about it too much.

But if I'm going to bed, wouldn't you say that with a result like that I would hypo in my sleep?

Well it wouldn't do you any harm (not the phrase he used by the same meaning). I think a lot of your problem is that you havn't listened to any of our advice anyway.

I have listened to all your advice, changed my insulin doses as instructed and adjusted them myself even lower, I have been in contact with the diabetes nursing service who keep referring me back to you, but they said I should move to using lower insulin doses and Dr. B agreed that with me last week. The only advice that I havn't followed is that of not testing, because I don't want to go to high or to low, and I want some idea of whats going on in my body.

Right, are you listening to me..

Yes...

You do need to stop chopping and changing your insulin, you need to eat a fixed amount of carbohydrate and a fixed time and do a fixed amount of insulin and stop testing all the time.
But I am doing as I have been told, I just want to get this sorted because I have had enough of it.

You have been offered the chance to come under our diabetic clinic, I think Dr L (Mr. I Don't really subscribe to the carb counting theory) offers and excellent service for diabetic patients, but you've refused to come under this, and what it needs is not these changes that you are making on the basis of one result but a change based on the big picture, which only Dr M at the hospital can make. Dr Beltran sent a referral to Dr M asking him to see you personally, but you should stop testing so much, because that is your problem.

I didn't say this, but I thought that if Dr M isnt going to see me then I cant just wait and carry on living like I am.

I've given you your advice, goodbye.

Bye

So I guess I don't need to change my Levemir, I need to stop testing and because I don't know when I'm hypo, I have no hypo symptoms, so therefore its not a medical problem. I'm glad I got that sorted.

[Funnygrl]

How often are you testing that they think you are obsessing?

I wouldn't go to bed at 3.8, but I would at 5.4, but I have a fair amount of confidence in my over night basals.

[seanmarr]

Yesterday I tested a total of 18 times (approximately hourly). I recognise your point about going to bed at 5.4, but when you're me and have been night time hypos all the time you worry about a figure that low, and my point is that as it went down to 3.8 AFTER having all those carbs and sugar I would have been far more hypo at midnight than if I had not.

[Funnygrl]

Yesterday I tested a total of 18 times (approximately hourly). I recognise your point about going to bed at 5.4, but when you're me and have been night time hypos all the time you worry about a figure that low, and my point is that as it went down to 3.8 AFTER having all those carbs and sugar I would have been far more hypo at midnight than if I had not.
Yeah...I see your point completely. How long was this after your lost novo dose? It sounds like you had a **** load of IOB.

And the waking up high totally makes sense to me. You had a ton of carbs, and long or short acting doesn't matter if you don't have the insulin to take care of them, and your Levemir is not suppose to take care of them.

I am not too familiar with the UK system, but is there any way you could see a new GP? Or better yet, and endocrinologist?

[seanmarr]

Dr. M is an endocrinologist, but he doesn't seem to want to see me, because Dr. B first referred me to him on the 06 February, but I hadn't heard anything back from the hospital since then, which is 50% of the reason I went back to her last Wednesday. I am due an appointment at the diabetic clinic on 12 March anyway, when I will get to see a member of his clinical team at least. I was originally due to have a clinic appointment in Janurary, but this kept getting cancelled (Dr M is the consultant at my clinic, but apart from when I transferred I have never seen him since). I did try bringing my appointment forward in November, and again in December, but there are none available.

I spoke to his registrar when I was in hospital though when I was transferred from A&E to a ward, but havn't done so since, and that was basically to confirm that giving me potassium was the right thing to do. I last had a clinic appointment at the beginning of January 2007.

Changing GP's is an option I have explored. Where I live(based on the GP catchement areas) thereare two big surgeries (I am under one of these), and one smaller one and one independant. When I went into hospital people at work, having heard about the story involving Dr L made some enquiries with the local PCT (through someone who used to work in store), and someone there made some enquireies on my behalf, and found that the other big surgery which has a good reputation was not accepting new patients, and the two smaller ones were mroe rubbish than who I was under currently, as although my GP had a reputation for being a bumhole, there were other GP's at the practice who were a bit better (this opinion is based on other patients expereinces as well). The PCT contact spoke to Dr B about me, particularlly about the 'largely in the patients head' comment, and then passed on a message to someone at work to have me go and see her and see what could be done about it. Dr B was very nice and referred me, which is something Dr L never did.

The reason why Dr L never referred me was because we wants me to join his diabetic clinic, so he can get his QoF money. Dr L has set up a pharmacy at his surgery now, so he is one of those GP's that earn twice as much as the rest of them (according to the Daily Mail, anyway).

So, in essence, I am better off staying at the same surgery and just not seeing my named GP. Dr L is my named GP, but I have the right to see anyone I want at the surgery, including Dr B, but it does mean Dr L deals with all my paperwork still.

Complicated isn't it?

BTW, the diabetes nurses are PCT funded, but the GP surgery have their own ones and the hopsital also have their own ones, but none of the want to help me:
* Hospital ones are for appointments and inpatients only
* PCT ones are for people not under Dr L (though I explained I am actually not under his clinic and then they were relatively happy to help, until last Tuesday when they told me that they were only responsible for the titration of insulin doses, and I explained I had already tried all that, so they told me to contact the hospital or my GP because they couldnt help
* GP's ones are always fully booked so its a good job I'm not under their clinic, plus because I'm not under their clinic they dont want to help either.

[Funnygrl]

I think you lost me on that post. What's a PCT?

[seanmarr]

Primary Care Trust:

Primary Care is the care provided by people you normally see when you first have a health problem. It might be a visit to a doctor or dentist, an optician for an eye test, or just a trip to a pharmacist to buy cough mixture. NHS Walk-in Centres, and the phone line service NHS Direct, are also part of primary care. All of these services are managed for you by your local Primary Care Trust (PCT).

Your PCT will work with local authorities and other agencies that provide health and social care locally to make sure that your local community's needs are being met.

PCTs are now at the centre of the NHS and control 80 per cent of the NHS budget. As they are local organisations, they are in the best position to understand the needs of their community, so they can make sure that the organisations providing health and social care services are working effectively.

For example, your PCT must make sure there are enough services for people within their area and that these services are accessible. They must also make sure that all other health services are provided, including hospitals, dentists, opticians, mental health services, NHS Walk-In Centres, NHS Direct, patient transport (including Accident & Emergency), population screening, and pharmacies. They are also responsible for getting health and social care systems working together to the benefit of patients.

[belyro]

Sean, I just feel terrible for you.

I have been accused of being an "overtester" myself - albeit not as rudely as you've been accused of it. I still am to some degree (which, however, is a matter of opinion), but I'm way better than I was. The answer for me was getting my Levemir does right. It brought me a LOT of stability that I didn't have before. In the past, I could check and be 5.0 and then check in half an hour and be 3.0. I was on way too much basal. Now if I'm 5.0, chances are I won't be much different in an hour (depending on when I last bolused, etc.). Until I got that stability, I just couldn't be comfortable "letting it go" - especially at night.

[Gary_W]

Sean, I really feel for you. I have also had less than happy results when dealing with my local care team. Have hope. Up until 2 months back, I had control that was not so hot (constant bouncing off the end stops). A chance comment from a diabetic nurse followed by some great advice from the people here have helped me a great deal. I really do feel a million dollars.

All of the following is my own opinion, and I am a long way from being an expert. Just what helped me, and in the absence of local help I hope you don't mind my input.

First thing that did it for me was realising that Lantus / Levemir are not meant to reduce BG. Just keep it stable. If you are not daring to go to bed with a BG of 5.4 without snacking due to the fact that you will consistantly go hypo, then IMO you have too much Levemir. I used to be exactly the same. If I went to bed at 9 or less, I'd have a night hypo. Look up all the advice on fasting on here and setting your basal rate and give it a go. I used to be on 35 units of Lantus per day. I am now on 20.

Since changing, I can go to bed with a BG of 5.0 and wake up exactly the same way. I can skip meals, I can delay meals. I can live a pretty normal life and man is it sweet after all these years. If you cannot say the same, IMO your basal rate is too high. This caused me a world of hurt and I feel that it is the first step to coming right for you.

2nd thing that did it was carb counting. I didn't realise that there was a ratio of carbs vs insulin. I always used to guess. It works pretty well for me, but until you have a decent basal it won't make sense to you. It also proved to me that I was eating way too much. But that was mostly feeding the Lantus... Since reducing the Lantus and looking critically at what I eat I have lost a stone in weight. Or 14lbs for our friends over the pond :) It is weight that needed to go which actually turned up when I started on the Lantus...

3rd thing that did it was that I used to overtreat hypos. 3 glucose tablets (9 grams of carbs) is all it takes for me on most occasions. And the hypos are nowhere near as evil as they used to be.

4th thing is the confidence to correct. And this ties in with point 1 re the basals. I blood test before each meal and 2 - 3 hours afterwards. Because I know the Lantus isn't going to bite me, I'll happily whack in a bit more at that point if needed.

There's still a lot to be done to tweak my days (always something new to learn that I hadn't considered) but the simple changes above have been worth their weight in gold.

Whatever you decide to do to help yourself (and help yourself you must in the UK at the moment), keep believing you can get it better. Hard to do with raging BG. It really makes me down in the dumps and it's hard to see a way out when you feel that bad. But you will do it ;)

Gary

[LancetChick]

Everything Gary W. said was absolutely correct. You can and should assume total control of your insulin management, especially in light of the fact that your arguments are superior to your doctors' arguments. In fact, your doctors are complete morons, which makes them similar to American doctors. Setting your basal correctly is really a vital first step, and you need to fast in order to do it right. As Gary said, once you get that set, it's pretty easy to get your insulin-carb ratios and correction factors. All these doses and ratios will need tweaking from time to time, an ongoing process, really, but the freedom and confidence you get from using insulin correctly makes all the difference in the world. As far as testing goes, how often do suppose your doctor's pancreas tests his blood sugar in order to maintain a normal blood sugar level? Constantly, that's how often! I test roughly 15x a day, which accounts for 15 minutes max out of my day (1/2 hour max if you include shooting up, logging and calculating). Totally worth it to me. By the way, I hope you're logging your sugars to make the best use of yor tests..... I've learned an awful lot by logging sugars, foods and insulin doses. Good luck to you.

[seanmarr]

GaryW - I am sorting out my basals - thats the reason I wanted to speak to someone at the surgery in the first place so that I can get my evening dose reduced, I want medical help in sorting this out because between Sept and Novemever last year I tried sorting myself out, trying everything I could think of and failed. As you can see the Dr kind of 'forgot' to answer my original question as he decided I was a psychopath as well. So, that night I decided (after talking to SueM) to reduce my Levemir by three units (I did attempt to call my DSN at 3:30pm, but as usual it was an answerphone and noone called me back). I have been semi starving myself for a bit, I want to do a 48 hour starvation but havnt got the self-discipline to do so at the moment.

Carb counting - I've got a clinic appointment on 05 March, will hopefully learn what I've needed to learn in the five years since switching to MDI. I have been working on it since joining the forum, but I'm not pedantic enough about it, but this doesnt explain my constant highs and lows - it would explain A high or A low.

Overtreating hypos - 90% of my hypos are now treated scientifically with 250mls Lucozade, and then 250ml more after one hour if my BG has not improved. As I dont get hypo symptons as such I cant just 'feel' when I'm not hypo, though I do just whiteout occasionally, but once i've wheted out I either just sleep them off or go on strange quests for sugar (which are quite scary to 'wake up' from.

Confidence to correct - I lost that last year.

LancetChick - I rely on my UltraSmart and the OneTouch Software to log all my results, I am getting better at remembering to log my insulin doses, but UltraSmart doesnt let me log the site which is making a massive difference, which is another question I had. I had got the point about pancreas's testing itself constantly, just forgot to mention it to my friend Dr. K!

On another, more positive note, I went into work to pick up my prescription for some strips, and found that despite my repeat saying 'Please see your GP to order more' and the fact I had only asked for one box of strips, some kindly GP gave me 100 and has allowed me to order 200 more, unfortunatly I did not see who signed the prescription because that GP would probably be one who would actually understand where I am coming from - I might go in and ask later on today, though I'm not sure whether or not they still have it in their dispensary.

I did cut back my blood sugar testing yesterday, but it certainly hasnt made me feel any better, so I'm going back to my half hourly blood testing.

Re the time it takes to do the tests, I should think that the PCT see's the 5-second blood test meter as a con, because it encourages diabetics to test more often and costs more!! Drug companies are laughing though!!

[seanmarr]

Just to clarify I meant 'up to' every half hour, not every half hour - yesterday I avouded doing it every half hour even when I was massively high in the afternoon.

[LauRa Lu]

Sean, My doctor thinks I test too much if i test more than 4 times a day. Apparently anymore than that is too much. So if i test 4 times and go low in between or super high I guess she doesn't care...why?..... because she's not diabetic that's why.

Best doctor I ever had was diabetic herself, unfortunately I had to move.

[Doug]

I think testing is good BUT testing every 30 minutes is excessive

For a high, the fastest Insulin doesn't do anything significant for 2 hours.

For a low once in half an hour should be enough.
BUT This is assuming that your basals are reasonably close. You should also have some idea how you react to a set amount of carbs.

Making too many corrections in too rapid a succession makes it tough to tell whats going on...

At one point I was on over 2x the correct amount of Lantus...

Then my Dr told me I should be able to skip a meal if I wanted.
I was stunned - when did this information get passed by me ?
I lowered my basals 2 units at a time once a week till I could skip a meal.

In the process of that, learning to count carbs and going on a pump - I cut my insulin intake by 60 % + and lost 60 pounds

You need to get a handle on the right basal rates first.

Doug

[belyro]

IAt one point I was on over 2x the correct amount of Lantus...

Then my Dr told me I should be able to skip a meal if I wanted.
I was stunned - when did this information get passed by me ?
I lowered my basals 2 units at a time once a week till I could skip a meal.


Ditto. Except that my doctor wasn't the one to tell me. I learned that here a few months ago. Not sure why my doctor didn't tell me. Life's a lot better now :)

[Gary_W]

Ditto. Except that my doctor wasn't the one to tell me. I learned that here a few months ago. Not sure why my doctor didn't tell me. Life's a lot better now :)

Ditto from me too... When I went on Lantus, I was told it was the same as the old stuff but lasted a bit longer. I kept upping the basal until my morning BG was looking OK, as that's what the care team told me to do. Not once did they ask what my BG was before going to bed and explain that the two should match if my basal is working...

Sean - glad you're starting to get some help. I really feel for you as I have the t-shirt.

250mls of Lucozade may well be scientific, but it is also 45 grams of carbs. Some people on here don't eat that much in a day. For me, 45 g is about what I have for breakfast.

Hypo treatment now for me is between 10 and 15 grams, and when it all works for you, you may find you'll be similar.

Good luck, and do keep us all posted :)