How were you told?

Circuspony

Well-Known Member
Messages
959
Type of diabetes
Type 1
Treatment type
Insulin
I thought my GP was bad, but reading some of these stories makes me feel quite lucky!

I rolled up at the surgery with blurry vision and weight loss. They took a urine sample and it showed high sugars and ketones. I now know they should have sent me to A&E then. Instead we had 10 days of faffing around while they insisted I was a type 2 because I'm in my 40s and type 1 is what children get. I got on google at some point during this process and proceeded to tick off about 8 of the 10 type 1 characteristics, so knew what I'd got - just needed the doctors to get on the same page.

When my BG figures kept getting worse (& I'd gone to low carb diet by then) they packed me off to A&E with a 'well maybe you are type 1 after all then'.
 

Gannet

Well-Known Member
Messages
129
Type of diabetes
Type 2
Treatment type
Tablets (oral)
Dislikes
Showbiz
I went to A and E with palpitations, breathlessness, generally feeling 'orrible. I'd been to the gp numerous times. I did notice the problem was worse after meals, but didn't think it would be relevant. They put me on a heart monitor, took a blood sample, including a finger prick test.
'How long have you been diabetic?'
'I'm not.'
'Yes you are....'
'!!!!!!'
They said that the palpitations were incidental to the diabetes, but in fact once I sorted my diet, that problem has settled.
That was over 15 years ago, and thanks to this forum ( more recently) my glucose levels have come right down. I have had very little help and advice - just told to cut sugar, eat low fat, and cut portion size. I now eat lchf and have returned to butter and cream.
 

Taliesin

Member
Messages
8
Type of diabetes
Type 2
Treatment type
Tablets (oral)
Dislikes
injustice, intolerance, bad manners, things that offend my neuropathy, food, the few days before a hospital visit, being helpless, "does he take sugar", wilful ignorance
I'd had a "structured treatment break", as they were known before we discovered that they are a very bad idea, from my HIV medication. My husband had died earlier that year and I felt I'd be better off not taking drugs at all than I would be with spotty adherence, which might lead to drug resistance. I'd been to the HIV clinic and had agreed to restart treatment and got home to a frantic phone call from the nurse specialist at the HIV clinic: "get to your GP as a matter of urgency - you've got diabetes".

That particular clinic was closed some years ago, an for once I was pleased about a resource for people with HIV being closed as they were utterly incompetent. It was the same clinic that ignored the results of my blood tests and kept me on a drug that was killing me and came within days of doing so. The consultant has retired but it does worry me that that nurse could well still be working.
 

Ann_W

Member
Messages
22
Type of diabetes
Type 2
Treatment type
Diet only
Mine was picked up on a routine blood test because despite an A1c of 101 I was asymptomatic. Officially I was told by the diabetic nurse when I went to see her - unofficially, I was told by the receptionist ringing me to say that following the blood test the doc wanted me to make an appt with the DN. I started to do research that same night. Luckily, I trained as a nurse back in the early 70s but a severe back injury at work has meant I haven't been able to practice since 1980. You can imagine my shock when I “brought myself up to date” with current thinking. I had quite a fight with my DN not to take meds but she had to leave me alone when my a1c kept coming down with each 3 monthly check and managed to get it down to 41 by diet alone in less than 9 months. I think I was lucky to train when I did and could remember what the first response to T2 was back then and had the confidence to stand my ground but I think the way I found out was less than ideal.
 

Jo_the_boat

Well-Known Member
Messages
784
Type of diabetes
Type 2
Treatment type
Diet only
I'd had a "structured treatment break", as they were known before we discovered that they are a very bad idea, from my HIV medication. My husband had died earlier that year and I felt I'd be better off not taking drugs at all than I would be with spotty adherence, which might lead to drug resistance. I'd been to the HIV clinic and had agreed to restart treatment and got home to a frantic phone call from the nurse specialist at the HIV clinic: "get to your GP as a matter of urgency - you've got diabetes".

That particular clinic was closed some years ago, an for once I was pleased about a resource for people with HIV being closed as they were utterly incompetent. It was the same clinic that ignored the results of my blood tests and kept me on a drug that was killing me and came within days of doing so. The consultant has retired but it does worry me that that nurse could well still be working.

Blimey, you've been through the wringer, my sympathies. The very fact that you're posting 'some years on' is great news in itself.
 
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petunia1

Newbie
Messages
2
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.
 

petunia1

Newbie
Messages
2
I was told that I might be diabetic after a routine blood test. I went in for a fasting blood test then had to drink about a pint of Lucozade(YEUK). Wait for about three hours then have another blood test I was told this by a very sympathetic doctor who told me gleefully that I was borderline type 2 diabetic " No more crisps cakes or sweets for you " After enrolling on a Dottie course a few weeks later I found that I could eat anything at all as long as it was in moderation.
EVEN CRISPS SWEETS AND CAKES!!!
 

tomfalc

Member
Messages
23
Type of diabetes
Type 1
Treatment type
Pump
Guy walks into room.

Guy says "Hello Ms. Notsusie, we have the test results back and I'm sorry to say that we can confirm the diagnosis of type one diabetes. The nurse will be along in a few minutes to take some blood."

Guy walks out of room.

Doctor walks into the ward dressed in golfing gear, tells me he can confirm that I am diabetic, and they’ll be discharging me from the army. Not sure which statement worried me most.
 
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Kentoldlady1

Well-Known Member
Messages
733
Type of diabetes
Type 2
I was told that I might be diabetic after a routine blood test. I went in for a fasting blood test then had to drink about a pint of Lucozade(YEUK). Wait for about three hours then have another blood test I was told this by a very sympathetic doctor who told me gleefully that I was borderline type 2 diabetic " No more crisps cakes or sweets for you " After enrolling on a Dottie course a few weeks later I found that I could eat anything at all as long as it was in moderation.
EVEN CRISPS SWEETS AND CAKES!!!

I have never heard of the dottie course. Is that where you were told you could eat anything in moderation?

And welcome to the forum!!!!
 

Glaikit1s

Newbie
Messages
1
Type of diabetes
Type 2
Treatment type
Insulin
After waiting 3/4 of an hour in waiting room: GP said " your results have come through, you do have diabetes, but the good thing is now you can get free prescriptions. I am running late so if you don't mind...."

And that was it! Fortunately follow up appointments in the following weeks with Practice Nurse were much better.
 
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P

pollensa

Guest
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.

Here is the system in Mallorca Spain. My test results were pulled off the computer, by a stand in Doctor in absence of my Doc of 30 years. She viewed same, looked at me and said "hmmmmmmm diabetes 2, your diabetic, stood up, passed me the result form, folded her arms, said don't drink coffee and good luck. If you want to speak further with your GP make appointment".

Thankfully I am a person that does not trust neither the medical or legal system, and asked for three opinions, it turned out typergraphical error as I thought on my first test, had I not had the good common sense, to have second and third opinions as standard procedure, I would have been continuing as Diabetic 2, I am infact, pre diabetic, well, in spain, still viewed Diabetic, but in New Zealand, due to cut off differences, Pre.

There was no sorry your Diabetic, no support line or diabetes associations given, or information if I check my fingers, or if monitors provided and strips....

That's the way your told in Mallorca, plus, I might add they are so far behind the times re Diabetes and formats and ways to treat and view, they need to address this, having said that, I cannot praise more the general national health system, albeit it Hospitals, or the local pacs surgeries as they are referred to they are fantastic.

Diabetes and treatments, way behind the times sadly

Mallorca.
 
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sweetbloodsher

Well-Known Member
Messages
87
Type of diabetes
Type 1
Treatment type
Insulin
Dislikes
cilantro, liver, rudeness, cruelty, impatience, prejudice, hatred. kale
Six weeks after knee replacement surgery, I was throwing up consistently for three days, and was so weak I could barely shower. My doctor, who is also my neighbor, offered to drop me off at urgent care on her way to work. Stumbled in, was told my blood sugar was over 800. Tossed into an ambulance and was hospitalized for three days; discharged on a holiday when the pharmacies were all closing early. Different endos told me I was T2, no, T1, no, T1 1/2.
 

Heretic1

Well-Known Member
Messages
201
Type of diabetes
Type 2 (in remission!)
Treatment type
Diet only
Dislikes
Diabetes!
I had a routine work medical and expected to be told 'Heretic, loose a bit of timber and your BP is borderline' . The nurse took the urine sample and when she came back just dropped into the conversation 'oh it looks like you're diabetic' (I was completely asymptomatic). My blood literally ran cold as she uttered those words, I think I nearly passed out. She did a finger prick test which was 16 (I hadn't a clue what that meant back then). She then said I needed to see the Dr to get a referral letter for my GP and sat me back in the waiting room - my head was swimming - I was in complete panic mode!
The Dr was quite good and relaxed. He asked what I was doing that weekend (it was a Friday) and said I was away with my mates on a lads weekend away!!! .... he smiled and winked and said 'don't worry too much, go and enjoy yourself one weekend won't make a difference at this stage'..... so I did!, though I only had half a pizza, and missed the occasional round of Beers!! - so was cutting down even then!
Only the following week did it sink in when I had my first hba1c test which came back at 97!!! ... again didn't know what it meant, just that it was too damned high and I had to sort it.
18 months on, now a skinny thing, absolutely fit as a flea (see previous posts) in fact fitter than both my kids!!, hba1c now 34, no medication ... oh and yes I do still have the occasional night out with the lads, a few beers, and a 'dirty' takeaway etc - just no where near as often as I did.
 

johnpol

Well-Known Member
Messages
919
Type of diabetes
Type 1
Treatment type
Pump
I Had been poorly for a few weeks, lost a lot of weight (unplanned), peeing a lot, thirsty, urine infection, bad pains in my kidneys and a fungal infection in my groin, decided I suppose I had better go to the doctors, but as was working away had to register with a GP's (that's a tale in itself) sat in the waiting room looking at a notice on the wall that listed all my symptoms!!! thought I wonder if I'm diabetic??? the GP didn't even mention it but took bloods anyway. Went home for the weekend came back to the work site on a Sunday evening to a Ambulance parked up waiting for me!!! off to hospital told on the way in the back of an ambulance by a very good looking female paramedic (who even held my hand telling me!!!which was nice) then in hospital it all went downhill from there!!! best thing was when I tod my soon to be wife that I was a diabetic, she said "your just a hypochondriac!!!" That was after 5 days in hospital!! very funny NOT!!!
 

Kentoldlady1

Well-Known Member
Messages
733
Type of diabetes
Type 2
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. Why cannot there be just a short info sheet giving phone numbers of clinics, web sites, help for insulin users when they dont know what to do at 2am but 111 is useless? Why should we have to turn to strangers for help?

I was dx with 2 autoimmune conditions at the same time, and I can see that lots of us have other health problems to deal with that can bring as many problems as diabetes. The huge problem is that there is simply nobody to ask for help, unless it is a forum. My first appt after being told by phone that I had diabetes was 4 weeks later. I have never spoken to a gp about my hypothyroidism. Did get an appt for 6 weeks after the phone call, but I was unwell when it arrived and so spoke about that instead. When I tried to bring up my hypothyroidism I was told that I had run out of time ( one problem, one appointment). So I never went back. Joined another forum instead.

I think that for t2ds like me who do not use insulin the situation is not too bad. But for those that use insulin the current way of dx is shocking. Tbh I am surprised that someone has not died. I truly thought that nobody would be sent out with an injection that can do so much harm and yet you have to take it with so little information. I have always had a lot of respect for those of you who have to use insulin, but now knowing that you have to this without help at the beginning makes me feel even more in awe!!!


Those of us on here are the lucky ones that can use the web, decide what to do and for the most part can afford to self fund testing. I do feel badly for those dx in the same way, but without such access to either forums or testing. No idea what to do about that though.
 
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statler

Active Member
Messages
33
Type of diabetes
Type 2
Treatment type
Tablets (oral)
Dislikes
salad
2a.m phone call from the doctor checking a routine blood test to get to the nearest 24 hour clinic asap. needless to say was possibly one of the most stressful times of my life. then told by the on call doctor that i should be ok till i go back to my own doctor on Monday. Who then when i saw him went running into the diabetic nurses office asking if he should get me an ambulance and rush me to a and e. luckily she isnt as stupid as my doctor :angelic:
 
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Wowsap18482

Member
Messages
12
I was told because I was showing most of the signs of type 1 diabetes and once they did a blood sugar test on me they confirmed it because my sugar level was at 34.7 (that is more than two times a hyper and the end of my how I got to know I had type 1 diabetes)
 

Bluetit1802

Legend
Messages
25,216
Type of diabetes
Type 2 (in remission!)
Treatment type
Diet only
2a.m phone call from the doctor checking a routine blood test to get to the nearest 24 hour clinic asap. needless to say was possibly one of the most stressful times of my life. then told by the on call doctor that i should be ok till i go back to my own doctor on Monday. Who then when i saw him went running into the diabetic nurses office asking if he should get me an ambulance and rush me to a and e. luckily she isnt as stupid as my doctor :angelic:

Sounds like the doctor checking your blood tests at 2am was working overtime. :)
 

Interaud

Well-Known Member
Messages
58
Type of diabetes
Type 1
Treatment type
Insulin
Dislikes
Cruelty, dishonesty, spiders
I was in Hospital 50 miles from my home, getting gall-bladder removed and complicated operation to open ducts liver/pancreas. On waking I was informed bluntly that it had been ascertained I was diabetic - post operation, not PRE-operation. Before the procedure I was continually asked if I was diabetic. Answer NO, not that I'm aware of because nobody gave any reason for me to think otherwise. Hit me quick, why keep asking the patient the question, instead of asking the professional? Did the trustworthy know but not share?