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First Diabetic nurse visit a bit of shambles !!!

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J

Justin

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Relationship to Diabetes
Type 2
After three months of zero help or guidance form my surgery, I finally had my first visit to the diabetes nurse today . It went pear shaped from the off and then downhill very quickly from there. I wont go into the gory details but suffice to say after three months of waiting, I was kinda hoping for a little more than a box ticking exercise ( which is what it turned out to be ) . I asked to see the practice secretary and insisted on seeing a Doctor so I could get better some guidance at least . Reluctantly she booked me an appointment for the end of the day . The Doctor too seemed to be on automatic and just prescribed me 1000mg of metformin to address the still High BG levels. I discussed with the doctor that I don't present as a classic Type 2 ( I am very skinny and am losing more weight each week ) and asked if we shouldn't do the necessary blood tests to find out if i'm LADA or Type 1 before prescribing medication for Type 2. He said no " try the tablets first" !! Should I insist on these blood tests or just start taking the tablets ? I have another HBA1c blood test on the 22nd . Do these people realise the impact that this diagnosis has and the dramatic lifestyle / diet changes we go through to try to reduce BG levels (and the worry that a sudden diagnosis brings ?) It really doesn't seem like it. I really am shocked at how little they seem to care . Advice on how to proceed would be welcome
 
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Looking back at a few of your previous posts @Justin I’d be pushing for blood tests. Can you ask for a second opinion? You mention ongoing weight loss and a high HbA1C. I think Type 1/LADA needs ruling out. There are a number of Type 1s here who were diagnosed at a similar age to you.
 
I will do this. I've been at this surgery since I was born and my mother was the surgery district nurse there for 30 years .It was a welcoming place to me for decades ( when I was young though and didn't really need it ) Recently However, all the older doctors have retired ( including the doctor I've had for the last thirty years ) and all the staff are new except one practice nurse . It's a horrible place now with zero " bedside manner " and my relationship with them has gone south in a big way (Just when i need it the most ) All very sad . How does one go about getting a second opinion?? Hospital visit ??
 
I believe you can request a second opinion from another GP at the surgery. If that would make you feel awkward, then you could try speaking to the GP you saw again. I’m not sure if you can insist on a referral, but you could ask.

Basically you have to be polite but pushy. Write down your reasons eg weight loss, etc, write down your blood sugar after eating a moderate carby meal, etc. I’ll tag @rebrascora because she might have useful things to add, having been misdiagnosed as Type 2 initially.
 
I would think you are fully justified in asking for referral to a specialist diabetic clinic, I would lay out your reasons why in writing to your G P practice.
Have a look to see if your practice has a complaints procedure in case you get no satisfactory outcome.
 
I think that you should get your GP to run the blood tests. If you are LADA there is a chance that type 2 medication will work for a while which means if the blood tests aren’t run you will only know if you are LADA when the T2 meds stop working
 
just out of interest just did a carb test with the meter. had two large slices of lidl low GI bread with salted butter to see the spike . 9.5 before eating this evening . went to 12.6 one hour after eating the bread , now down to 9.9 2 hours after . Not in any medication and this bread is the first "blatent " carbs I've had for seven weeks .
 
Well that isn’t too bad ,is it?
 
I posted that before I finished typing.Oops silly me! Anyway a BG of 9.5 before you eat is a bit out of range but could be a lot worse
 
thanks . yes i think the weeks of no /low carb are actually having some effect, although not as dramatic as I would have expected with such a radical diet change hence the concern that I may not actually be a type 2 .
 
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Hi and welcome from me too.

Sorry to hear you are struggling to get the support you need. I was fortunate in that my practice nurse knew her limitations of knowledge but was switched on enough to suspect that I might not be Type 2 even though that was the original "assumption". I think it may also have helped that our diabetes clinic seems to have a good working relationship with the practice nurses and my nurse had several case conferences with the consultant during my first few weeks because I was not responding to treatment as they expected and my HbA1c was very high.
I didn't know any better, so I just took the medication prescribed (Metformin and Gliclazide) and became progressively stricter with my carb reducing diet. I kept a food diary along with my readings and discussed this quite regularly with the nurse.... maybe once a week. At week 5 people here started to realise that I wasn't Type 2 and encouraged me to call my GP and push to be put onto insulin.... It took a lot of courage as I get white coat syndrome even though the GPs are all lovely and I totally botched it because no GP likes to be told that their patient thinks they know the best treatment for them because some keyboard warriors on the internet told them so. Thankfully as it turned out my repeat HbA1c was done a couple of days later and had increased instead of decreased and I was started on insulin anyway.
Apart from some digestive upset, it didn't do me any harm to take the Type 2 medication and in fact the Metformin wasn't stopped until several months after I got the results of my Type 1 testing, but the Gliclazide was taken off me when I started on insulin. I didn't get the Type 1 testing until after I had seen the consultant, who sanctioned the tests and another couple of months before I got the results.
Not sure any of that is much help to you. I personally feel that a consultant is much better placed to interpret the results of those Type 1 tests as sometimes they can be less straight forward than you might hope and it takes experience to understand the full picture they portray, so I would be reticent about a GP sanctioning and interpreting the results. Also one of the tests has to be frozen almost immediately and then shipped frozen to the lab and many GP surgeries and even local hospitals don't have the collection service for that, so there is a risk that the sample could be compromised by inappropriate sample handling and that could perhaps lead to false results.

I think a second opinion is worth trying for. I think it is worth asking difficult questions like "What makes you think I am Type 2?" and "Why don't you think I might be Type 1" and "if I am Type 1, do you realise that I am being put at risk of an emergency admission to hospital if my flagging insulin production fails much more" If that happens I will be making a formal complaint. I would also stress that you are making an enormous effort with diet and exercise to bring your levels down and you are rapidly losing weight, but you don't feel like your health care professionals are supporting you or looking at your case as an individual.

Hope most of the above makes sense. Not at my most coherent at 2.30am. Good luck!
 
Justin said:
just out of interest just did a carb test with the meter. had two large slices of lidl low GI bread with salted butter to see the spike . 9.5 before eating this evening . went to 12.6 one hour after eating the bread , now down to 9.9 2 hours after . Not in any medication and this bread is the first "blatent " carbs I've had for seven weeks .
Click to expand...

And what happens when you eat a normal amount of carbs? If you are Type 1/LADA and you eat low carb, it can mask the issue and delay a correct diagnosis. You’ll find many nurses won’t listen to you properly re your minimal diet and will only focus on your results being ‘not too bad’. They then tell you to carry on for months, and dismiss your concerns about misdiagnosis.

So, don’t eat low carb. Try a couple of days of normal carb meals and see what your blood sugar does. It’s those results you need to take to the nurse/doctor.
 
thanks for the replies . All of therm make total sense . I think I will pay for a private c peptide blood test. really keen to get an answer as soon as possible and because of the bad relationship with my doctors i really cant face the long drawn out process of asking them for it . Also like the idea of a normal carb blood sugar test. will try that to get. a more realistic baseline
 
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@Justin Get the antibodies test too. The C Peptide is sometimes inconclusive in slow-onset Type 1. A consultant would need both tests (and your medical info)to make a diagnosis. If the C Peptide is borderline that will be inconclusive and further delay an answer for you.
 
Have been on the metformin for three days now ( 500mg twice a day ) and I'm assuming that they're just starting to kick into my system ? today I had waves of extreme tiredness with slight tightness in the chest and slight difficulty breathing/ catching my breath . Is this normal ?
 
I think it might be wise for you to call 111 as if you are having problems breathing that is not good.
Sometimes people get tiredness but I have not heard problems breathing or tight chest of it as being a problem.
The usual thing is stomach issues.
 
Leadinglights said:
I think it might be wise for you to call 111 as if you are having problems breathing that is not good.
Sometimes people get tiredness but I have not heard problems breathing or tight chest of it as being a problem.
The usual thing is stomach issues.
Click to expand...
I have mild COPD that is extremely well controlled without a hint of any flair ups for four years now .Wondering if this may be part of the reaction?
 
What are your BG levels like? I too would be concerned about tightness of chest and breathing problems even if mild. DKA (diabetic ketoacidosis can cause breathing difficulties) so if you have been misdiagnosed and BG levels have shot up, that would be a major concern.
 
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