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?

I have T1. Can't say I've had any problems with Medical professionals but the ignorance I have had from Joe Soap is shocking. There seems to be this misconception that children have Type 1 and adults have Type 2. As if we suddenly turn into T2 when we turn 18 FFS.

My T1 DH was in Hospital a while back for unrelated injury. They put him on a sliding scale. It stopped working during the night and the alarm went off. He buzzed for a nurse who took an hour to get round to him and rather than fix the equipment, turns out he just turned the alarm off. DH was on morphine and a bit out of it. In the morning he felt awful, went to do his sugars and he was 36! Highest he's ever been. The pump hadn't been working the whole time. We were furious as he then had to stay even longer to get back to normal and none of the staff understood diabetes at all but they didn't want him off the sliding scale. He insisted that even drugged up, he was safer caring for himself so went back to injections.

And yes, they should definitely have two different names, they are completely different conditions. I like the PP's comment that they just said they had an auto immune condition. I'll suggest that one to DH.

So my brother is type 1 (diagnosed at 9) and my mother almost tore her hair out trying to deal with under educated, under informed and (frankly) under interested teachers at his school.

(He’s also mildly physically disabled which makes it even harder for him to deal with alone)

But poor mum was constantly made to feel overbearing, over protective and just generally like a total arse because she wouldn’t relinquish all responsibility for my brothers health to people who

A) didn’t want it

And

B) pretty much thought type 1 could be caught like a common cold 🤔😒

She was dragged into meetings at the school and everything. It was totally disgusting and scary.

I feel your pain and think it’s something a lot of people with type 1 face

My husband has been type1 for 26 years. The ignorance from many health professionals over the years has been incredible and quite frightening as they could have caused dangerous harm. We have been extra vigilant when he's been in hospital for unrelated operations etc. and he's insisted on managing his insulin himself following one episode where he was given an overdose of insulin despite explaining and pleading with two nurses that they were wrong.

Just a couple of months ago his surgery amended his prescription to a maximum of 1 box of test strips per month (25 strips per box). He explained he needs to test at least 5 times a day as he injects 3 times a day and also drives to and from work. They wouldn't budge and we had to buy the strips ourselves while they argued it out. It took a stern email from his consultant to the gp threatening all sorts to make them see sense and he now has unlimited strips.

The amount of times I've collected his prescription to find they've missed off the insulin and upon calling the gp have been told he'll have to wait 5 days. Umm no he can't!

I have LADA (type 1.5, a form of type 1). When I was first diagnosed, my GP said "you have diabetes" and referred me to the hospital clinic. Which is always booked up for months, so my appointment was 4 months later. And sent me home with no medication and no info on what to do if I got more ill (ie go straight to A&E). I was fine, as LADA is slow onset, and I suspect I'd had it for years, but you'd have thought they'd at least have prescribed me metformin or something?!

The same GP surgery refused to prescribe me more insulin when I needed a double prescription as I was about to go on holiday for two weeks and wanted to take a spare pen. I was literally in tears at the surgery with that one.

I also had the "you'll need to test far less once you get used to it" bullshit, as a real reluctance to prescribe me more test strips. I had to physically go to my surgery once a fortnight to request a new prescription and then back again the next day to pick it up. Then I moved and so got a new GP. In the check-up they do for new patients, she said (completely unprompted) "that number of test strips is pretty stingy. Let's double the prescription, and I'll also put it on repeat dispensing so you'll get six prescriptions at a time". The new GPs are really great, even though I'm under consultant care. So there are some good ones out there!

@agnurse

Wow. This is SCARY.

As my username suggests, I'm a nurse.

A health care provesional, in charge of the wellbeing of others, who believes that homosexuality can and should be "cured". Now that is scary.

You’d think drs would know better really. It is frightening how much ignorance there is still. I remember nearly 20 years ago being on a school trip with my friend that was type 1. We were on a walk in the middle of nowhere and my friend started to feel low. The bitch of a teacher wouldn’t let her have her glucose tablets because it wasn’t lunch time. We begged and begged and said how dangerous it was. She collapsed and left in an ambulance.

I’m with you OP.....

I have epilepsy and a nurse once asked me if I have to carry an Epi-Pen

My DH is T1 and the lack of knowing they lack knowledge in some medical professionals is frightening.

He said to a GP once “I don’t have an issue with you not knowing everything, but don’t guess”. Same GP had tested him when DH thought he might be diabetic and said it was “iffy high” so to come back in a couple of months. Three weeks later he saw another GP, tested at 39 and was sent off to hospital.

Last year when he needed surgery on his broken leg the ward staff did he couldn’t use his own insulin and they’d get the doctor to prescribe it. So 7 hours later the doctor appears and says he doesn’t agree with the doses as DH is a ‘big man’ so he was prescribing a higher long acting dose and a set amount 3x a day for his other pen, even when DH said he never took that amount as he never needed too the doc was adamant.

In the end he ended up in considerable pain from his leg as he refused to allow the staff to give him any medication whatsoever as he was told they’d just give him glucose in his drip if they didn’t agree as in their opinion he needed it. The woman from pals practically sprinted to the ward on the Monday morning in horror when I spoke to her and it was quickly resolved after that.

This is terrifying reading. I work in obstetric endocrinology & I cannot abide medics interfering in T1 treatment plans.

My pet peeve 'table the pump off in labour' (if you want her to die) .FFS.

RAGE.