[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:

1. I am a crackpot
2. I am wrong for expecting to at least have been able to get some control over it by now
3. 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
4. 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.

[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]

Originally Posted by 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.

Time to get a better doc.

[Simon]

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 )