AIBU to despair of medic's not understanding Type 1 Diabetes

[Scaramoose]

I need to vent.

I am a Type 1 diabetic. I have no complications despite having it for almost 40 years, I am not overweight and my blood sugars / cholesterol etc are all in the target range.

Since DS has been born six years ago, and also during my pregnancy where I had a lot of appointments, I have been given advice such as: I only need to test three times a day (during pregnancy - this would have been seriously dangerous) and anything more is 'pointless', been informed that I would need to be weighed again as I 'may no longer be diabetic' and been advised to 'ensure my child eats healthily so he too doesn't become diabetic' and, yesterday, asked if I 'have considered taking diabetes medication'.

AIBU to expect someone giving medical advice to a) read my notes b) understand my notes and c) not automatically assume I am a Type 2 diabetic which is very different to Type 1 and d) not to give out advice if they are not sure what they are talking about?

Oh and BlackWatchBelle, my MIL has had T1 since she was 2 and is now in her late 70s. She is doing really well, her only problem is thickened skin on her fingers which make it hard to do sticks. She refuses to try one of those 'robot nanny state swiping things' though 🙄

I’m a t1.
All they go on about now I find is hypos.
The last consultant I saw (different one each time for last six appointments) wanted to pinpoint the EXACT number of hypos I’d had in the last year. She said ‘shall I put one?’
I said ‘Are you counting a hypo where I’ve needed assistance, in which case none, or anything below 4.’
She said ‘anything below 4’
I mean dear god. Any reasonably controlled diabetic (a1c was 42) is going to have had hypos. I don’t have many thanks to the Libre / dexcom but I get the odd one in the high 3s probably once a week. Non-diabetics routinely have sugars of these levels and in fact the advice at some hospitals is not to treat anymore unless below 3.6mmol.

I sometimes think they should allow people to work in t1 diabetes unless they or a close relative have it.

I did go and see the DSN at the surgery - under duress - and she asked if I was t1 or 2. Told her t1 and she said ‘oh do you take insulin? You should probably be on insulin.’ Ahhh that’s where I’ve been going wrong the last 25 years, I haven’t been taking the insulin. She also said I should take statins based on no information other than I’m diabetic. My bmi is 18. My blood pressure and cholesterol are low. She however was morbidly obese.

I could rant for quite a long time over crap that has been said to me by supposed professionals over the years.

My consultant is diabetic. He's awesome.

I had a t1 in my class when I was teaching. She ended up in dka because she’d had a vomiting bug and the GP advised her mother to stop giving her any insulin at all to avoid hypos.
24 hours later -DKA.

My parents would have known to ignore such terrible advice but she hadn’t been diagnosed that long at the time and people trust what they are told don’t they?

YANBU at ALL.

DD has Type 1 and was hospitalised aged 4 when she had a tummy bug. Low blood sugars and high ketones - you know the drill.

The doctor told me they would give her a 'nice big dose of insulin to get rid of those damned ketones', despite the fact that her blood was 2.1 at the time. Thankfully, the nurses were amazing and between the three of us managed to discuss insulin/glucose drip etc. It was bloody terrifying.

wreck thanks, that last part did make me laugh out loud.

jayne thats good to hear! My boy is going to try the libre sensor at his clinic soon, its funded where I live and I am a bit excited to try it.

I work as medical welfare in a high school and we have 5 T1 students.

My extended family have loads of auto immune disorders, we all seem to be T1, have dodgy thyroids or are ceoliac, so its something I grew up understanding. I have one cousin who has all three!

On several occasions every school year, I have to go and explain to teachers that they should not ask a T1 student to wait for break time to test or inject, and that they shouldnt tell them off for eatings "sweets", ie flippin glucose tablets when they want to! I have had to have these conversations with Science teachers with biology degrees!

The trouble is I think they read about diabetes in a book and then a lot of them think if it’s not how the book says it should be you must be doing something wrong.

I get a rise about half the time when I get up in the mornings. Last two mornings woke up around 5mmol, had breakfast, no rise.
Today got up at the same time and with no breakfast had risen to 12mmol.
Dsn said - when looking at me results a while ago - in a superior way ‘you are high some mornings, put the basal up. That’s what the pump is for’
Yes great. What about the mornings when my blood sugar stays around 5? Then I will go low. Pointed this out and she was like ‘ah, yes. Oh’

Oh ...my...

such ignorance of the difference between type 1 and type 2...

and health 'professionals' too!

I totally feel for you. It is a complete disgrace.

I'm not diabetic, but agree that the names need changing to prevent such ignorant confusion.

Jayne DH loves his nanny state swipey thing. He gets them VAT free at Superdrug if you are interested. (boring trawl round all the local chemists' to get the best value by yours truly). Our CCG allows them now, though, before that it was t'internet.

hoarder the standard advice IS now that ALL T1 should have statins regardless of cholesterol level/risk/BMI. Sorry!

Nah I’m not taking statins. My dad took them and they made him ill. Until someone tells me that my cholesterol is up I’m not taking them!

Oh and my dad is t1 as well...

BlackWatchBelle, I've been type 1 diabetic for 36 years now and don't have any complications. I have also got underactive thyroid and Addison's disease which are more common in those with Type 1 diabetes. I have 5 children, a career and enjoy my life My mum has similar concerns when I was a child but I hope I can reassure you. You'll bring him up to be so resilient 😁

Ps. I was put on statins but my cholesterol was very high. I'm not overweight though.

My main worry as a t1 is my children developing it... I can’t decide whether to trial net or not. Have other people used it?

Statins should be offered to type 1 diabetics over 49 or who have had it for > 10 years. I've not been offered them and wouldn't want them either

Sorry over 40 not 49 fat fingers

Ah. I’m not over 40. Maybe that’s why the consultants haven’t mentioned it.

Hoardernomore - we took part in the trial. I have 5 children. 1 of my children is already Type 1 but the others haven't got any markers for it. I'm really glad we did it as I can rest about the others

How do you do the trial? Is it the one trough Bristol university?

Yes it’s based at Bristol but they have satellite clinics. I could take my children to the local hospital.
I don’t know. I can’t decide if it’s better to know or not...

I'm not sure either. I mean you can't prevent it for them but by taking part in the study you could find a cure for their great grand children

We did the trial at Addenbrookes

YANBU. DH type 1 diabetic for 45 years. Had a operation a couple of years back and had to go to have a chat to one of our surgery's younger GPs about managing his diabetes before and after the operation. I went with him. The GP launched into a monologue and I sat there thinking, this doesn't sound right. Eventually the GP paused for breath and asked DH what he thought. DH sat very calmly, and said 'If I did all that I'd be dead. She had assumed he was Type 2 and made the excuse that it was an easy mistake to make as the majority of her patients were Type 2!

digdeep thank you. Nice to hear the positives! I don't want anything to stop him in life..