How were you told?

[hh1]

Because of a previous job I had a little medical knowledge and was pretty sure what my symptoms meant. Went to my GP, had the blood test, went back for the results and he very kindly and sensitively told me I had diabetes. This was a couple of weeks before Christmas, and I think partly because of that and partly because I was age 30 at the time he tried metformin first but of course with no results (so I should probably have been referred to the hospital straight away). After Christmas I was referred to the DNS at the local hospital who was absolutely fantastic in terms of coaching me to inject and to measure carbs & insulin. In the 30+ years since then I've had very varied experiences with HCPs, and I didn't get on a Dafne course until some 17 years later after diagnosis (I don't think they existed then)! It was amazing how out-of-date my knowledge had become, which I think is an indicator of the quality (or lack thereof) of the diabetes care I'd had, despite keeping all my appointments and attempting to keep up through Diabetes UK. This forum is a fantastic resource for the newly-diagnosed and I wish it had been available 30 years ago.

 

[MikeTurin]

I am amazed at how similar many of our stories are. There seems little recognition of the fact that a dx of diabetes is a life changing event. However, the lack of info at the beginning seems rather stupid.

Especially because we are talking about a condition that is widespread and from what I am reading it's so widespread to be an huge cost to NHS, and one the key factor to control the condition is being people aware and educated.

We aren't talking about keratocounus or Pellucid Marginal Degeneration, that could be overlooked even by a non-trained optician if it's not seeking about it (or using obsolete manual equipment).
There is more awareness on heart and hypertension conditions.

 

[Squire Fulwood]

How was I told?

I was at the doctor's surgery and the nurse asked if she could take a blood sample. I told her to help herself. I got a letter asking if I would fast and attend another appointment where more blood was taken.

Another letter with an appointment to see the doctor. He asked what he could do to help but I had to point out that it was him that had written to me and not the other way about. I told him he was supposed to be talking to me about my blood results but he said there weren't any on his computer. He phoned the lab who said that they had binned my blood due to the name being wrong on the documentation.

He gave me two test tubes which he labeled personally and told me to report to the diabetes clinic on the following Monday (there is a clue there if you follow it). I was to get DN to take more blood and put an urgent sticker on it. I did all that and am still attending appointments for foot tickling and blood letting.

 

[JenniB]

I have just seen apost from a new member who was told she was t2d by the gp receptionist. I was told in a phone call and told to make an appointment, which was for 4 weeks later.

It seems to me that such a huge bit of life changing information should perhaps be given face to face, by someone who can answer some immediate concerns and provide some basic info and not leave us to flounder about on our own.

I appreciate that those of us who are told in this way are quite lucky. We have not ended up in a and e, as t1ds, or t2ds in life threatening situations. And I am really grateful about that. But I went into full headless chicken mode for a week and only ate bananas (yes, I thought they were good for me) until I found this site.

I suppose in the end it has worked out ok for me. But like most on here I am fairly pro active. What about all the people who are told in that way and dont bother to look, because if the gp so obviously doesn't think its a big deal so why should they?
Or they are not computer savvy and just dont know how to access information?

Just curious to know if anyone has had a good experience. I was certainly given the impression that t2d was of no big importance.

 

[JenniB]

I was told by the doctor who just said 'had your results back and you have diabetis' I asked if that meant I had to inject insulin (I was in a state of total shock) and he turned away and printed off a google search result showing in a short paragraph the difference between T1 and T2 and said 'No, you don't need to inject anything. I will give you a prescription for some tablets'. That was go 6 monthly for blood tests at the surgery and ring the receptionist a few days later and she just says oh 45 or 48 or whatever and that is the end. That is my 'treatment'. the more I read this site the angrier I become about it all. It is a total abuse of power on behalf of the doctor to not better inform patients what 45 or 48 or 53 means. It is a number but I did not understand it and felt it must b, otherwise surely someone would tell me, so I must be better right? I am going to change surgeries as the particular doctor I see at surgery is their 'diabetis specialist' - shame he does not share his knowledge with his patients.

 

[stephenlopez]

I was told by the GP himself. He said that I've diabetes and when I asked for reason he said it is genetic, and when I tried to ask more stuff he said that he has other appointments and he is busy, so I should make other appointment some other day to ask more questions. I literally had no idea how to deal with diabetes and my only source of knowledge was my dad who is suffering from diabetes from last 21 years.

The most helpful place where I got help was this community. I joined some others too but they weren't even barely helpful. So, all the credits of my improvement goes to DCUK and amazing people around here. My last HbA1c was 49 reduced from 62. So, yes I suggest everyone to join DCUK if they are seeking help. Also, If someone is new here and looking for some help, here read this information https://zovon.com/health-conditions/diabetes/ It was very helpful for me when I started and sorted many questions out! So, yes things will get better!

 

[Ziggy2017]

@Kentoldlady1 I wasn’t told I had diabetes as I was recovering from a double lung transplant the nurses would prick my fingers (they made a right job of that almost slicing my fingers in half) and my mum would give me my insulin injections (I was 14 at the time) so I just went along with it because I knew they were doing these things for a reason

 

[Fayefaye1429]

It's so sad to read the lack of care given. I was similar. I knew something was wrong and asked for a blood test and they refused. I finally got one when I'd dropped weight from 89kgs to 57kgs in three months. they took about another three months to send me to the consultant. The doctor said I'm afraid your diabetic you are allowed to cry now. I simply said no thanks what do I do now? I spent a long time looking for something to help me feel better and I badgered the doctor for months. I was told a month after being diagnosed I would have been lucky to live another three months without being diagnosed. I was 15 years old. Care is the key in any profession.

 

[Dodo]

I was diagnosed back in 1966. The doctor came to the house, took one look at me, asked for a urine sample and straight away said I was diabetic. Within the hour I was collected by ambulance and admitted to hospital for two weeks. I was only 12 at the time but everything was fully explained to my parents. It seems actual diabetes care has deteriorated over the years despite advances in technology and medicine.

 

[Shecat]

I have just seen apost from a new member who was told she was t2d by the gp receptionist. I was told in a phone call and told to make an appointment, which was for 4 weeks later.

It seems to me that such a huge bit of life changing information should perhaps be given face to face, by someone who can answer some immediate concerns and provide some basic info and not leave us to flounder about on our own.

I appreciate that those of us who are told in this way are quite lucky. We have not ended up in a and e, as t1ds, or t2ds in life threatening situations. And I am really grateful about that. But I went into full headless chicken mode for a week and only ate bananas (yes, I thought they were good for me) until I found this site.

I suppose in the end it has worked out ok for me. But like most on here I am fairly pro active. What about all the people who are told in that way and dont bother to look, because if the gp so obviously doesn't think its a big deal so why should they?
Or they are not computer savvy and just dont know how to access information?

Just curious to know if anyone has had a good experience. I was certainly given the impression that t2d was of no big importance.

In A&E Dept I needed the toilet, Nurse gave me a bedpan, 10 minutes later her head floats round the curtain and she says “you are a type 1 Diabetic and are going to ward blah” my blood sugars it ended up were over 500 and I was dying of Ketoacidosis all of which she forgot to tell me! That was 35 Years ago

 

[Shecat]

I went to the doctor at age 37 because my cycles had stopped. Not pregnant so did hormone tests. When I went for results I got "You are in full menopause and by the way you are diabetic" Needless to say that was a very bad day.

PCOS?

 

[rab5]

Phone call

 

[therower]

Visited GP, relayed all the unexplainable symptoms ( pre google days).
Doctor asked if I could provide a urine sample ( absolutely ridiculous question at the time ). Urine sample was no problem, getting it in the pot what with the blurred vision was the biggest challenge .
A brief wait in reception, back into GP and " you have type 1 diabetes " simple as that.

 

[TonyHancock]

I finally managed to get myself to the GP following several weeks of thirst and the consequences of satisfying that thirst. I had an idea what was coming but had no understanding of terms or numbers. The GP explained I had Type 2 Diabetes, but one or two other anomalies required further testing. One was high adrenalin levels and another was wildly varying blood pressure readings. (The latter turned out to be white coat syndrome). I was prescribed Metformin - 500mg once a day "to start" and told to return to take my place in the Australian Diabetes care plan which it was emphasised provided visits to a nutrition specialist, podiatrist and the clinic's own diabetes specialist nurse "free of charge".

Upon my return to the GP and the nurse, I explained I had opted to follow the Blood Sugar diet and had abandoned the Metformin prescription. I had purchased two blood glucose monitors and two blood pressure monitors, all different brands. (I like to double check any readings that appear anomalous.) The GP was quite supportive but asked several times if I could stick to the 800 cal a day diet)

Three months later I returned to the GP having shed 15kg's and with readings in the non diabetic range. I still haven't taken the, what I now know are HbA1c details down. Rightly or wrongly I have obsessively focussed on my meter readings taken as many as 8 times a day.

It was upon this return visit that I took the issue up about the approach to T2 Diabetes and queried why diet was not a major focus given the obvious benefits. The response was interesting as the GP wearily highlighted the multiple failures of patients to stick to diets and their requirement of a "quick fix" in the form of a pill. I guess that is what has happened in society today - it is all about a quick fix rather than putting the time and effort in for a long term solution. (Oh dear I sound like a grumpy old man!! )

As an aside the GP was very well read and we discussed at length the Newcastle Diet, Michael Mosley and Roy Taylor.