Rant about my Dr

[seanmarr]

Some of you will know that I had a very important appointment with my GP today, where I was hoping to be able to get all my current lows/highs/ketones etc. sorted. Unfortunately, this is how it went...

I got there three minutes early, noticed surgery was running a bit behind because other people were being called in when it was more turn, eventually got in at around 10:55 (perfectly normal).

I went in with a sheet that I'ld prepared showing all my BG levels and the BG and ketone levels from the past couple of days, and had revised in my head what I wanted to say beforehand. I was high when I went to see him so I wasn't in my most lucid of states.

I started by telling him that I'm still going high/low and if anything it had got worse since I last saw him in December. He went through my notes, and pulled up the letter about Levemir and perused its contents. He looked through the sheet, grouping the results together saying it was difficuult to identify a pattern, and I said I couldn't identify any real pattern and where I had (with the evening results) I had taken action to change them (by moving to two injections a day). He then said that there was a pattern, pointing to my 6pm results, yet I saw that he was saying they were higher than they should be, yet there were several results that were definitely hypo in that column, but I really did not want to point that out.

He then told me off for not writing in when I had meals. He had told me previously to write them in a day-chronological format, which I had. I just nodded along. As far as I am concerned I need to do blood tests to work out whether I am high/low/normal if I constantly feel bad, and it would have been a waste to disregard the rest of the results and probably would have led to incorrect conclusions being made.

I told him about how I seem to randomly blank out, he wasn't really interested, didn't ask anything, and then he then went and read the letter that was sent by the diabetes nursing service, and told me I should not have 'ASKED' them for Levemir, and now its going to make it much more difficult for me to get in control, and means we start again. And he repeated this phrase several times. Every time I change my dose etc, we must start again. And then he looks at me like I havn't done my homework.

I explained all I had done was contact the PCT Nursing Team and asked them about changing to two a day as I did not want to make any further changes to my regime without it being medically approved and I could not get an appointment with him. It was actually the PCT Nurses who brought up the subject of Levemir, and I then discharged my concerns to them about what Lantus was doing to my body, and we mutually agreed that it would be better for me to try Levemir than try pussyfooting with the Lantus. I did not tell them to give me a ****ing prescription for Levemir or anything like that at all, and did not insist that they do anything - if anything I was too undemanding.

But what have we actually started? I followed his instructions and just got worse, they don't really make any sense. I really have not got six months to wait for results to get good, he seems to think I am on a quest to get perfect control, which I am not (at least not at the moment), I just want to feel good again - I don't need perfect control to do that.

He then went to say something like

'Sean, you don't understand....'

and I interrupted him and said

'Yes, I know insulin and food are connected to each other and you're supposed to count carbs and base your insulin....'
'I don't really subscribe to that theory'
Thats not what people on the forum have told me, but I didnt say anything - it seemed pretty fruitless.

He then commented that he hadn't got any information from the letter about what my dosing on the Levemir was, and I said to him I hadn't been given any information really either, only the vague instructions that 'I should reduce my insulin' and 'split it into two injections a day'. I havn't been told what times to do them, or what units to take so based on other peoples experiences I decided to cut it to 30 and do 18 at night and 12 in the morning when I first went on it, and then after two days I moved to 20 at night and 14 in the morning.

He ummed and ahhed, didn't really know, so asked me what units I was taking of the Lantus before, and decided based on that to up my morning dose to 20, despite telling me in previous appointments I should never vary my insulin by more than one or two units, and my knowledge that different insulins require different dosing.

After we had finished with all that I asked him to change my repeat prescription from Active Strips to OneTouch Ultra strips, which he did surprisingly quickly, [this is good because the OneTouch allows me to record insulin doses and food intake as well as the results, so will hopefully shut him up about that].

While that prescription was printing, he started adding notes to my records. I don't think he realized I could see what he was writing. I first corrected him when he wrote I had contacted the hospital, and saying I didn't but I contacted the diabetes nursing service, so he corrected that. He then went on and wrote that 'Presented with a lot of blood sugar results, not in correct format, Patient advised that we must start again because he changed to Levemir, advised to up morning injection to 20 units blah blah .... problem is largely in the patients head'.

At this point I largely though along the lines of **** off, and decided to say something to him about this. I said that I did not feel that the problem was largely in my head, and if I have got a problem with my head its because I am feeling so **** because of all these problems that I am having. I cant remember what he said, but he smiled and said something, then told me to make an appointment for next week.

WTF am I supposed to do? I know I'm ill, I always thought that if its in my head I can't prove anything so theres no point, but even though I'm now getting ketotic they're still not interested.

The thing is, when I phoned the diabetes nursing service, they didn't seem all that bothered by my morning hypos either, nor the fact that I can no longer think straight. But now, I'm bothered because I cant live like this any more. To me its very worrying that because I feel constantly hypo/er I cant feel a real hypo coming on and then wander around London waiting to be mugged.

I really do not think that:

I am a crackpot
I am wrong for expecting to at least have been able to get some control over it by now
that I was wrong for approaching the PCT Diabetes Nursing Service when I could not get an appointment to see him or bring forward my clinic appointment at the hospital
That I'm an evil bastard expecting too much from them because I have NEVER contacted either the PCT or my GP specifically about diabetes related issues until I decided I had lost control and couldn't cope and needed help


PS. Ive probably missed bits out, I was in there for the full ten mins, but you get the gist and the main points of what he said.
PPS. I hope it makes vague sense - if it doesnt, its only a rant!

[princesslinda]

Sounds like you need a new doctor! I hate you had an experience like that...but I wouldn't go back for more. There are tons of doctors out there....find someone else with diabetes in your area who likes their doc and try him out. You'll do better with someone who not only listens to you, but hears what you're saying! Makes me angry just thinking about it. :mad:

[Aftiel]

That is simply a crazy experience. You showed much more patience than I would have I am afraid.

If we boil it down, you truly have but 2 choices:

1. Stay with that doctor, and continue getting poor treatment combined with a poor attitude. (while trying to educate him in the meantime.)

2. Find a true Endo who has a clue and isn't a bitter, life-hating moron.

I vote for option #2.

p.s. - there is nothing wrong with you. You are educating yourself and working to improve how you feel. It will pay off - do not give up. Find a doctor that matches your attitude in that regard.

- Aftiel

[gettingby]

SEAN, GET A NEW DOCTOR !!!!!!!!!!!!!!
Now that I've said that again, I only have one comment to your list.
Yes, you are crazy. We all are. LOL. This diabetes mess that we all have is just a nightmare that we all seem to be having at the same time. LOL. Tell your doc that the next time he says " problem is largely in the patients head'.
Hopefully you took what I just said as humor cause that's how it was intended. I know from the other night in chat that this is not in your head. You are in serious trouble here and you need help. Find a doctor who is willing to work with you, not dismiss you. Good Luck and keep us updated.

[seanmarr]

>>INSERT AFTER
I don't really subscribe to this theory

He then went one to explain (as he had done the previous times I had seen him) that you base your NovoRapid on what you are going to be doing later on and what youre eating and you raise or lower it based on that. I have already said that I knew all this, and in previous appointment he advised me not to keep doing 'correctional' doses when it went too high, and I followed this advice but it brought no immediate benefit, it only made me feel worse.

[Stuboy]

sounds like you need a new doctor mate, one that atleast hears you when you say you're having real problems. You could also put in a formal complaint about him, Surely they are not allowed to write notes such as "problem is in the patients head" !! that's ridiculous, i think i would have grabbed the paper and threw it at him, "you try living with this ----- disease when it's out of control, then tell me it's all in YOUR head" &*£!$er.

Just reading about **** dr's gets me frustrated. Im SO glad i have a good diabetes healthcare team on my side. I count my blessings there...

Seriously though, change the dr and put in a complaint.

I think you will find the Ultrasmart very usefull, and will possibly help you out wonders with control from the infomation that it gives back to you if you use it to it's potential.

Good luck!!

[Dan Gato]

Sounds like you need a new doctor! I hate you had an experience like that...but I wouldn't go back for more. There are tons of doctors out there....find someone else with diabetes in your area who likes their doc and try him out. You'll do better with someone who not only listens to you, but hears what you're saying! Makes me angry just thinking about it. :mad:


Ditto

Time to get a better doc.

[Simon]

Ditto

IMHO a referal to a proper endo is an absolute must. GP's like to think they know enough but half the time I think it's just that they get paid more if they take on the diabetes care themselves. If you live in a city then changing doctors is easy so do it.

[grace girl]

GET A NEW DOCTOR!!! I had to get rid of my first endo because he and his nurse kept telling me that it was "all in my head" that I was dropping over 120 points a night. That was just one aspect of it, trust me. Getting a new doctor was the smartest thing I ever did. Don't let this set you back, either. It's frustrating dealing with the quacks, but once you find a good one you will see better results. There is a doctor out there who will take you seriously, and help you.

[seanmarr]

This particular GP has his own diabetic clinic - I feel sorry for his patients, though judging by the time I was booked in as a guest most of them are retired so wouldnt be worried by the fact that they cant concentrate for longer than an episode of 'Diagnosis Murder'! I am so glad I turned down the 'opportunity' to join his clinic.

I am on refereal to a proper endocrinologist, but I last went to their clinic in January last year and my next appointment isn't due until March, and despite trying I cannot get an earlier one. The hospital do not provide anything for diabetics unless they are inpatients, which is why I got referred to the PCT Diabetic Nursing Service when I tried that.

At the end of the day I can count the number of times I have seen a GP in the past five years (ie excluding just going there to collect a prescription on one hand and two fingers, with only three issues
3 times in the past couple of months with the total loss of control I am experiencing
3/4 times in february/March when I had the flu and nothing they gave me helped
2 times in the previous year because of an allergy to something (still don't know what)

I.e. a total of ten times, which I think is very low. In fact, the first time I went there in (I think) March 2005 the nurse practitioner didnt really bother with my problem (an allergy rash) and spent longer taking my blood pressure, medical hisotry etc. so that the practice could get their QoF money. I really do not think it is much to expect that when I need help, they give it to me, and not just decide its too difficult so if they leave it six months it will get better on its own with a little tweaking.

The fact he mentioned 'start again' made sense to me, its what I want to do, but I don't feel that I am starting again because I am still having the same amount of food, the same rapid acting insulin, the same rapid doses, and a similar regime - surely if things are this bad then it needs a whole change!?!

If I change GP all my notes will get sent to a new one, so I will still be left with the fact that the 'problem is largely in my head' on my record. There arent many options around here, the surgery I am under has 18000 patients, there are two others that might take me on but I think one of them is full and the other has a reputation for being pretty poor. One alternative I have got is to see another GP at the practice - I was talking to one of the dispensers at work who described this particular GP as being 'nasty', but she mentioned another GP who was 'nice' and might actually listen to what I am saying, but again I've got the problem she will look at my notes. Then, I will most likely get questioned as to why I saw this other doctor, why do I keep going behind his back etc, and I think it is highly unlikely that this other doctor would challenge what my current doctor says because he is the 'lead' GP.

The problem may be in my head but that is most likely due to the fact that I am under a lot of stress (housemoving, parents marital breakdown, brothers drug/alcohol habits, mountain of uni work to catch up on) and that the constant highs and lows mean I cant even think straight, and that I now get so worried about getting high and low because I cant feel the difference so I just constantly test...

And I'm currently 16.8 after being high all day and am showing a 'Trace' of ketones.

[gettingby]

Hang in there Sean. We stuck with you the other night through the highs and lows and we will stick by you now. We'll get it figured out somehow.

[princesslinda]

Sean:

Sounds like your doctor can't handle the fact that he can't get a handle on your problems. Those egos are HUGE!

Regardless of what's in your notes, i'd try the other doc in that practice. I work with a group of doctors, all different personalities, and they are very aware of how certain doctors deal with patients differently. His partners probably know how he is. I would just go to the new doctor, tell your story, tell that you felt like your orig. doc didn't take your concerns seriously and thought your problems were "in your head." That way, YOU'VE broached the subject and gotten it out of the way. Doctors aren't going to pay as much attention to that part of your notes anyway, most want to "start fresh" and draw their own conclusions (or that's what i've found happens in the clinic I work for. I think you'll do fine if you don't overstress about what the other doctor may have written in his notes. Just give the next doc a chance and see how it goes. What have you got to lose?

[seanmarr]

For those that are interested in this sort of thing, this is the chart I have been using. The Lantus/Levemir changeover is indicaed by the LS at 21:00 on 18/01. There are about four night time hypos missing from the chart, but I couldnt fit them in:

http://seanmarr.com/bloodsugars.pdf

[belyro]

What are the B's and the S's Sean?

(It's probably something really obvious and I'm about to feel dumb....)

[seanmarr]

I cant remember :-)

[rzrbks]

Depends on where you are in UK, but if it were me, I'd be trying to find a new Dr.

I know it's a pain in the @$$, but I spent nearly 2 years between drs because the ones I found were either (1. not covered by my Ins or (2. convinced they were related to God and didn't need to listen to me

Finally, I found one I could work with and I've been with her for over a year now and am very satisfied.

[Stuboy]

that's a really good chart Sean! I was going to suggest that you make another chart perhaps and record your levels before you eat (a titled column) and 2 hours after (another titled column) for breakfast lunch and dinner. This might help you identify if you are particularly high after eating certain things (if you also note what you've eaten on the chart).

I did that when i was first diagnosed and it really helped identify what foods did what to me, and also allowed me to adjust my bolus for that meal to experiment how much i should take to that it doesn't cause me to go high.

Saying all this, you may well have already done that. But i thought i'd make the suggestion anyway.

[MJM]

Sean,
Firstly, congrats on going to the doc. It's unfortunate that you ended up with the one you currently have. DROP HIM like a hot coal. Whoever you get couldn't be worse than that.

Secondly, I think your problem is 'not in your head' but 'in your doctor's head'.

Thirdly, try the second doctor in the practice and explain your predicament to him/her and how your previous doctor didn't seem to have the capacity to be able to help you and was totally inadequate for your needs.

Now, I don't know the effort you put in to try and sort this yourself. This is not a criticism but I simply don't know your routine other than you are either high or low most of the time.

I'll give examples of what people have to do to get good control:
1. Eat the correct foods (Read up on the Glycaemic Index in this regard)
2. Avoid foods that are going to give spikes
3. Try to stick to routine meal times. You must be strick in this regard.
4. Exercise a few days weekly, i.e. even just walking for 30-45mins at a time.
5. Avoid foods with very high fats.
6. The body needs adequate proteins and nutrients to function properly.
7. Get adequate sleep and rest.
8. Stick to the healthy lifestyle and you'll enjoy life to the full. The benefits you will receive will outweigh everything else.

If you have the facility to speak to a dietition, it would be very helpful as long as they're not like your current doctor.

Get the wheels rolling man, and enjoy the wonderful benefits that will accrue. You know we're all behind you, so do it for yourself firstly, and then for the rest of us here.

[Funnygrl]

I've had many crappy doctors. Many who think my physical problems are all in my head. And I have fired each one. And my health has remarkably improved greatly, as has my doctor phobia. I would be so incredibly frustrated if I were you right now, and you have every right to be. I would definitely find a new doctor.

[seanmarr]

sorry that my last reply was really short - I had to run to get the bus so I could go and get some blood done at the hospital, only to find that they now have different opening times and had closed up 1/2 hour before I got there.

The B's are Breakfasts, the S's are swimming, LS = Lantus/Levemir Switch, L is lunch and D is dinner.

For Ketones, L = Low, M=Medium, H=High.

On MJMs 'action plan':

1. Eat the correct foods (Read up on the Glycaemic Index in this regard)

I am improving my diet - when I used to have good control I did eat pretty much what I wanted and used to adjust my insulin as needed. Maybe I was lucky, but it worked for me. Sue has sent me an excellent book entitled 'The Pocket Guide to GI' and I have given it a skim-read on the bus - the most amazing thing Ive found so far is Coco Pops are better for you in the GI sense than Rice Crispies! So I will be making some adjustments to my diet based on that.

2. Avoid foods that are going to give spikes

I need to learn what they are, I always avoided things like Polos unless I was hypo, but now it looks like I need to avoid Rice Crispies as well

3. Try to stick to routine meal times. You must be strick in this regard.

90% of the time I have three meals a day, although at the moment because I am doing absolutely nothing it will be easy to stick to mealtimes, when I live my normal life I'm at uni sometimes, and some lectures are scheduled 11-1, other times at work so take a 12pm lunch because thats the only one I can be guaranteed (that was agreed back in the days of Mixtard) and dinner can be variable depending on commuter transport, uni lectures, whether or not I need to do the cashing up at work, having other stuff to do and going out in general. I was 'sold' the four injecitons a day regime based on not having to eat regularly, so if I dont have that advantage I think I may as well go back to Mixtard and should probably have never changed in the first place (thats a rant at my Diabetes Team, not anything else).

4. Exercise a few days weekly, i.e. even just walking for 30-45mins at a time.

I don't drive so walk pretty much everywhere. When I was at college I used to do four hours of proper hiking in two sessions a week on hilly terrain around the college, but that stopped when i went to uni, but I still walk around two miles a day. I have recently supplemented that with swimming - I want to get back into 'the outdoors' but find it really difficult to do on my own.


5. Avoid foods with very high fats.

I have avoided McDonalds and that lot completely and restrict myself two one takeaway a week, though occasionally it can get up to three if I cant find any decent sandwich places when Im in London. I do realise I need to cut back my fat intake, but I'll be making those changes along the lines of the GI Book Sue sent me.

6. The body needs adequate proteins and nutrients to function properly.

I probably don't get enough of these - only problem is I'm very fussy and I cant cook. I have been eating tinned casseroles which are actually quite nice and try and nick my mums vitamins and eat two bananas a day, but they run out really quickly.

7. Get adequate sleep and rest.

I have noticed over the past month although I end up doing nothing all day I don't actually rest or sleep as such, I just panic, do loads of blood sugar tests, worry about my diabetes and run away into the chat room and stressing about what I am supposed to do to get myself well again, and what I am going to do about real life when I'm going to recover, and making sure my mum doesn't notice I'm like this. I don't normally go to bed till about midnight, and have been waking up after 3-4 hours quite a lot and then not waking up in the morning. When I checked up on the causes of sleep deprivation (other than hypos but I normally sleep through those) one of them was depression, and at the moment I feel as though I am living the life of a depressed person.

8. Stick to the healthy lifestyle and you'll enjoy life to the full. The benefits you will receive will outweigh everything else.

Because I've got away with it up until now thats going to be difficult, but once I get myself out of this, I certainly don't want to get myself back into it.

So all in all I am trying to sort myself out. Just not doing very well at it. But I am only just starting. As usual, the forum is much more helpful than the healthcare team.

[slipperyelm]

He doesn't subscribe to the "theory" of matching your insulin to your carbs????!!!!

This doctor is making me angry. What a jerk, and probably stupid, too.

That is very unprofessional for him to write that the problem is all in your head. Because he knew you were reading the notes, I think he wrote that in order for you to read it. I think he meant to insult you. He probably does not really even think that the problem is in your head. He probably is just the sort that is pissed that you have the audactity to think for yourself, and to try to do anything other than what he initially said (or _thinks_ he said.)

I worked for a very short time in an allied health field in four different hospitals and I can tell you that kind of language is unprofessional. I also tutor a small number of nursing students, including in how to keep medical records and make use of records others have made. That note in your record is totally inappropriate, at least the way we do things in this country. If I as a medical person read that in your chart, believe me, I would be suspicious of the doctor. I have far less respect for a doctor who does not respect his patients. His written comment will not stigmatize you, it will stigmatize him!

Generally I think and feel very highly of doctors. However, there clearly are some out there that need to be booted out the door. Rrrgh! This guy makes me mad.:mad:

[Starlight]

Oh geeesh. I really feel for you having to put through all that ****..'Cos ya know, he's a doctor and he knows BEST! He has experienced diabetes and knows the ins and outs even though he's only a GP, NOT an endo. It's absolutely absurd that he doesnt support the insulin/carb relationship. Has he heard of the device called the pump or maybe..the pancreas? :stupido2:

Anyways, my suggestion to you is to go to the endo..You'll get there and you wont believe the difference. Good luck... :)

[seanmarr]

My problem is I can't go to the diabetes clinic until March because it is fully booked up until then - I was supposed to have an appointment at the start of January but it got cancelled. I have explained this to the GP, hospital and PCT team but none of them will do anything about bringing me forward, basically because they can't. So I am stuck with whatever help they will give me, which ain't all that much. I am going to try and scan the letter the diabetes nurse sent me and the Dr so you can see exactly how helpful it was.

I will not go under a GP's diabetic clinic (whether its this particular GP or not) because I don't believe they have the same training and experience as a bona fide endocrinologist.

[KritterMom]

Is there any chance that they might have a cancellation, and you could take that appointment? Just a thought!

[Georgia]

Not sure if this is an option for you but I know of a private diabetes clinic in London. Otherwise could you ring your diabetes clinic & ask them if they have any IDAC/DAPHNE courses lined up that youcould attend?

[Funnygrl]

One thing I do notice is that you are taking over 100 units a day. Some type 1s find they benefit using oral meds and being able to cut back on their insulin useage some. Has anyone mentioned trying this to you before?

[cheryl]

I am so sorry you went thru such ****, now I feel bad that my dr's appointment was a really good one, but I had my fair share of idiot dr's and after four changings I finally found a good one it has taken a while.......when I read your first posting sorry I skimmed the rest it struck me my endo said each time you change your lantus around to a different dose it can take 3 to 4 weeks to actually notice if it doing the job crazy I did not know that.....maybe that is what he meant but he was not clarifying himself period, because I was only staying on 20 units and getting hypo and if I went down to 18 units after 4 days I got high and upped it back to 20 he said I should of waited 3 to 4 weeks makes sense and also the hypos are because your on too much and then eventually the liver is dumping your glucose thus brings on the highs, my dr. explained a lot to me today in so much detail, I thought I'd share this with you..........Maybe if the doc's would actually explain themselves we might understand it just a little bit better instead of going crazy, i feel for you because i was going nuts and my old endo just kept upping the Lantus and what not and was like you need to carb count but said we'll get it whenever yada yada yada never explained Lantus or what not and what should be done and how to use it properly no wonder we all go crazy, I have no clue about levimer, but I would definately get a new dr one that actually freakin talks the right way and reacts in a positive way to your concerns what a jack ***.........I had my fair share trust me.....

cheryl

[seanmarr]

When I first went to see him and he was calculating averages for my early morning blood sugars I had to point out to him that you couldn't really count the high ones because of the liverdumping phenomena, and he looked at me as though I am some sort of twit. His whole stategy is to get the fiveresults at before breakfast, before lunch, before dinner and before bed and get them all around 6.0. I deliberatly didn't do it like that because I have hypos and hypers in between, and have no control, and was trying to demonstrate that in the chart I made. Still, he had a go at me for not doing specifically as he had asked, even though it still does roughly the same thing.....

Stuboy, I am going to try doing the chart as you suggest, basically to shut the doctor up and hopefully if I give him exactly what he wants then he'll give me what I need... thats if I do see him again.

[cheryl]

I see what your doc was trying to do. But he didn't show any kind of respect towards you period. It looks like counting the highs in the morning because you have to find a good dose to cover the DP. But he should of really explained more to you, that was so wrong......ughhhhhhhhhh

Cheryl

[Dewey]

Sean, getting a new doctor (if possible) would help you immensely. I think the doctor you are now seeing isn't worth the time of day it takes to wait on him. If there's any possible way to see another one, I'd look into it.

It sounds like you are truly doing your best to gain some kind of control here, and the doctors & nurses should only play as part of your "team" to help you in maintaining (or regaining) those levels of health you seek. If they are not willing to listen or do what it takes to help people in their quests to be healthy, then they shouldn't be allowed to "practice" medicine, and it's time for you to find those who are willing.

Please don't lose hope & know that you are doing your best. We're here for you & will help & support in whatever way we can!

[seanmarr]

I cant scan it so here is the text of the letter the PCT Diabetes Nurse sent me:

Dear Dr X.,

Re: My details

Mr Marr has been in contact with the Community Diabetes Nursing Service regarding his diabetes management. Mr Marr feels that his Glargine insulin is not the most suitable as although he has increased it to 40 units as advised, he has been expereincing hypoglycimia in the early hours (sic) he will then have rebound hyperglyimia later on, yet if he reduces this doe, he finds that he has elevated blood glucose levels at around 7pm-8pm suggesting that the Glargine action is running out.

Mr Marr informs us that he has researched this extensively on the internet and feels that twice daily dosing of baseline Insulin would be more appropriate. I would agree with Mr Marr that as a true Type I diabetic twice daily Levemir insulin would be more suitable, to give him better 24 hour cover. Mr Marr is keen to do this.

Therefore, if you could be so kind as to provide him with the appropriate prescription for insulin: Levemir (Detemir) flex pens 3ml x 5. We have discussed some starting doses, obviously these doses will be titrated according to his blood glucose levels.

It does appear that Mr Marr is currently taking excessive Novo Rapid doseage with his meals, in his own admision he feels he is eating far too much carbohydrate to prevent hypoglycimia during the day.

I therefore reminded him that his carbohydrate intake and his doeses of Novo Rapid are intrinsically connected and therefore, if he is toreduce the amnount of carbohydrate he is eating at each meal he then also needs to reduce the amount of Novo Rapid he is injecting.

We also discussed excercise and reduction of Insulin doses prior to excercise. Mr Marr is currently swimming for approximately two hours twice a wekk, we have advised him on reduction of his Insulin for this excercise and the inclusion of rapid acting carbohydrate during this excercise.

Your Sincerely
Nurse Y
DIABETES SPECIALIST NURSE
cc file, notes, patient.

I will make a further post in a minute critqueing this letter and explaining exactly what was said during the phone call.

[Gary_W]

Sean,

I really feel for you. Look up my first post to the forum a week or two back and you'll see why. The GP's are all keen to get you on their books for diabetes care as they get paid for it. The hospitals are groaning under the strain and they are glad to be rid of you so as their waiting list initiatives are met.

I looked at your chart and thought of the following. Please forgive me if the following advice is off the mark or it's all stuff you know already. Also, I'm a bit of a newbie as far as carb counting goes (first I'd heard of it was 2 weeks ago), so I'm probably not the best help to you. Being over-confident and excitable, this isn't about to stop me trying. With these thoughts in mind:-

I was getting loads of highs, lots of lows, felt absolutely pants all the time and couldn't seem to get things right. I am on one shot of Lantus a day and Novorapid with meals. When I changed from NPH to Lantus 3 or so years back, the nurse told me it worked in the same way as the regular long acting insulin, only it lasted longer. This isn't the case as I now know.

So, sorry if you already know the following but this is what helped me.

1st revelation: My new understanding of Lantus is that it is not designed to bring blood sugar down, only keep you stable in the absence of other factors. If you have your Lantus dose correct, you should be able to go to bed at 5.0 and wake up at 5.0. I can now do this. I used to go to bed purposely high so as not to go hypo in the night. Reason was too much Lantus. I have dropped my dose from 35 a night down to 20 and it now does what it should. I used to use it like NPH, so always had too much sloshing around acting when I didn't want it to. This meant unexplained hypos and, due to not injecting enough short acting, bad control with meals.

2nd revelation is carb counting / GI. It really does work. You will almost certainly find that you are eating way more than you think. I certainly was. I need more insulin in the mornings, and high GI breakfast cereal is a killer. 90% of cereals are high GI, so either find one that isn't (all bran etc), eat something else or accept that you'll be high for a bit. If you count the carbs in a high GI cereal you should be able to get it down after 2-3 hours, but a kinder cereal will make you feel better in the interim. Worth a bash to cut out the rice crispies etc for the mo, as they do whack into your system in about 3 mins flat :)

3rd revelation is don't overtreat hypos. I would empty the fridge, then be 18+ half hour later. 15g of carbs is plenty for me. Which is 1 level spoon of sugar in a coffee and 1 digestive biscuit. Previously, it would have been 3 sugars in a cup of tea, 3 biscuits and maybe a piece of chocolate for good measure. And OJ too if it was a bad one. Ok the rest of you, jaws off the floor, nothing to see here....

4th revelation is correction shots. Always unpredictable before due to the excess of Lantus biting me as well. For this reason, I would never have dared do a correction shot at 10pm at night. I'd have just gone to bed high. Now, if I am too high 2.5 hours after a meal, I know that's where I will stay unless I do something about it as the Lantus is doing nothing to help. I'm still getting my correction doses sorted, but when I've needed to I've got back in the ballpark. Only trouble I had was with a bug last week that was bad, but otherwise they're there.

Apologies again if you know all of the above. It's just that they have changed my life and I'm excited about the fact. The last 2 days have found me with so much more energy it is unreal. Waking up as 5ish, back to a 6 at lunchtime, back to 5.5 a couple of hours after lunch and stayed there.

Hang in there and yours will change too. Good lucj :)

Gary

[seanmarr]

Hi Gary,

All advice is useful :-)
1: I came off of Lantus because of its undocumented side effects discussed elsewhere in the forum. I was aware that it acts only as a background insulin, but wasnt aware that the test was to go to bed at 5.0 and wake up at 5.0 - I am guessing that the same principle is supposed to work for Levemir, I dont know if anyone else has any expereince?

2: SueM has sent me a really really good book that even a fool to himself can understand that I'm going to start using to sort my meals out..so far one fact Ive learnt thats amazed me is Rice Crispies are worse than CocoPops!

3: I always overtreat hypos, I cant help myself. I have noticed that if I go into Budgens on my way home from uni to buy some general food shopping, and Im slightly hypo, I end up buying stuff I shouldnt eat - I dont know why though! I am conciosuly trying to sort this out, but am not having much luck!

4: Correction shots - my doctor banned me from doing them ages ago - which is why right now Im ketotic and am not doing any. Im jsut waiting for the insulin to hopefully kick in.

Thanks Gary, I think I did read your post and you had a bad story to tell, I feel real empathy with anyone who gets no help from their team

Sean

[Gary_W]

Hi Sean,

1. Have a look around these forums. It was news to me as well, but you'll find tests such as fasting during the day. If I understand correctly, your BG should neither rise nor fall during the fast if you have your basal dose (lantus or levemir) correct. Obviously, don't go for a run :) But I was certainly using my Lantus to mop up excess food, which is not its job. Since I've stopped asking it to do a job it isn't good at, things have been looking up.

2. Have a look at books of glycemic load as well. This takes into account the amount of carbs in a portion of food as well as its GI. It means that if something is low GI but you eat an absolute shedload of it then you're still in for trouble. As to the cereals, cornflakes are the ones that kill me off the worst and I love 'em. For breakfast this morning I had 1 round of wholemeal toast with butter (feel those arteries harden!), a grapefruit with a bit of fructose sugar (tiny amount and lower GI than regular) and an apple. I'm a big bloke, and I honestly thought I'd be starving all day. It was 6 hours between this and my lunch and, besides a whiff of healthfood, I felt fine.

3. Get glucose tablets. They work much faster than anything else you're likely to eat, and you only need 3 to get you through the worst. Tastewise, I can't stand 'em. I would much rather have a bar of fruit and nut. But these things get you through the hypo without rebound, they work quick and I find I'm less likely to panic eat. And they don't pile on the pounds. If you prefer coke to get you through, buy the mini cans. 330ml cans (or worse 500ml bottles) go down in one when you panic, and they are WAY more than you need. Well, they're way more than I need anyway :) Once you're a bit more level you'll trust the small things to get you through. Honest! I did drop down to a 3 a little while ago (still getting my evening meal ratios right and haven't quite cracked it yet). A mere 15 grams of carbs has brought me up to a 9. It is that easy to overdo it.... I used to typically get through 3 times that amount. Heck there's some folks on here that eat less carbs in a day than I used to use to treat a hypo.

4. Just interested in what mode of transport you used to visit your doctor on his planet? Correction shots are a lot easier when you know that you're not competing with Lantus so that's going to bite you too and also you need to work out how much brings you down by a certain amount so as you can correct without sending yourself the other way. Your chart seems to show you going to bed as an 18 and trusting the Levemir to get rid of it. Which it may do to some extent if your basal dose of it is too high. But it's really not a reliable way of doing it.

Gary

[pinkytricia]

((((( Hugs.. Sean )))))

[REDLAN]

3. Agree wholeheartedly with this point. I've now gone over to dextrose tabs after having a series of exercised induced lows last week. They work quickly, especially if you suck them, and they taste utterly vile (I exaggerate - but they aren't tasty), so there is little chance of you over compensating.

[GPF]

Sean,
Funnygirl is right. FIRE YOUR DOC. After all, in one capacity or another you pay for his services. He works for you. Or used to. You wouldn't take this treatment from any other profession. Why Him?