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 feel everyone's pain.

When my dd was in hospital newly diagnosed, I had the mum of another patient compare it with her diabetic dog.

And YY to the 'I couldn't do it' for injections. So what, you'd just die then, would you?

Somebody took her daughter to the GP and the doctor did a blood test. Apparently her blood sugar was incredibly high, so the GP said he would make her an appointment at the hospital to be seen within two weeks!! The little girl was taken to the hospital, A&E, the next day because she was becoming very ill and apparently the consultant said “I don’t know how this child is still standing“ because she was perilously close to a diabetic coma

Am type 1 too, it was a nightmare when i was pregnant i had to check my newborns blood because the nurse didn't know how to do it. Luckily my own doctor is type1 too so get great advise from him

I wish I could say I'm surprised.

I think this would be more understandable if type one was very rare, but it’s not!

Don't worry the ignorance of diabetes isn't limited to Type 1, am type 2 and I get all sorts of shit about it - do this do that do the other - much of it counter the course they send you on and get the arse about when you don't go etc.

I also wonder how many type one diabetic‘s have ended up with either complications or hospital applications put down to “poor management” following advice from their GP’s

I was diagnosed on New Year's Eve via my GP but the hospital didn't want me in that night (too busy) so said I should go in the next day (bm of 27) 🙄 that was almost twenty years ago but still...

My husband has type II diabetes but is not overweight and certainly wasn't when he was diagnosed 12 or so years ago. We eat a healthy diet and his goal is to get down to 95kg (he is 6ft2") but in his case this will not cure it or make it go away. We tell Drs when we see them that he is an insulin dependent type II but most just dismiss it and he has had some scary infections as a result . I have 2 nephews on different sides of the family who are type I one more stable than the other and both been in some scary situations with medics. There has been some new research and I have attached the article in case anyone is interested .

www.livescience.com/61917-diabetes-five-types.html

Dh used to work with a type 1 diabetic. He was in a lot of denial when he met his wife, who was training to be a nurse. She helped to put him straight. I don’t know much about managing type 1 but even I realise some of these comments are astoundingly ignorant.

I have a few medical conditions, some of which are denied to even exist by some medical professionals. Doctors (some doctors) eye roll patients if they google but if we didn’t, we’d know a lot less.

T1 here too!

When pregnant I was hospitalised to have steroid injections.
The midwives wanted to put me on a sliding scale.. as well as my insulin pump I protested for at least a couple of hours and they eventually got in touch with my consultant (at the same hospital) to check that when I was saying they are going to overdose me I was correct.

I spent the rest of my time in there and the week after my DDs birth very much on edge because of their lack of knowledge.

Also had a GP do a urine test on me once. He looked at me with a shocked expression and asked if I'm diabetic. I said yes, if you'd looked at my notes you'd know I've had it for 20 years

It's concerning. It really is.

Ooo I've got another good one. I DKA'd a few years ago when I had a sickness bug. A few days being in HDU and I had a hypo. The nurse pumped my cannula full of glucose and made me drink a full can of full fat coke, obviously I then went really high. I couldn't believe this nurse didn't know how to treat a hypo (I was too ill to argue).

The consultant had put me on a sliding scale only taking into account my fast action insulin and when my endo consultant came in her went mad!

While I've had some pretty daft suggestions from random people, and a scary number of people wanting to know where I keep my insulin "in case you collapse and need an injection to bring you round" at least my Drs so far have been OK.

Although, not as bad as glass suppers in that I did have someone check I'd removed my pump before they put me on a sliding scale, it did then turn out they had no protocol in place to get me back on the pump. This being a Saturday the suggestion was to wait till Monday when the specialist would be in!

A friend and I always laugh after our clinic appointment we we get the feedback text asking "would you recommend this service to friends and family" Err, not really.

GlassSuppers I had the steroid injections too but they were fine with me using the insulin pump and managing that side of things myself.

When I first went to the ante natal it felt like an uphill struggle - other than the obs who made the comment about my child eating healthily so he doesn't become diabetic, there weren't any major confusions with the Type 1 vs other types. However, what was an issue was me feeling like, despite HbA1c's in the range of 5.1 - 5.8, I was capable of managing things. A lot of assumptions were initially made about things like whether I knew how to do blood tests which was frustrating but I suppose they have to cover themselves from that angle too. Finally though, when I had DS via elective c-sec, I (and DH!) were the only one's sorting the insulin side of things which was great. I felt like I'd finally got some respect and they realised that I would know how my body would react to things.

Its a bit petty I know, but I was SO glad DS was 7lb too - I had been told constantly how he was going to be huge 'because of your diabetes' (and DH was about 10lb) and I managed things so tightly that it thankfully paid off!

GigglingHyena I worked with someone who told me about her diabetic friend who 'passed out' and they were poised over them with his insulin in hand! This woman was quite patronising to me generally (about work, I mean) and didn't like me diplomatically telling her that you should never inject anyone with anything if you don't have the slightest idea what you are doing! Rather basic advice to follow too, you'd have thought

I find it astonishing that medics dont know the difference between type one and two. I'm pretty sure we covered that in GCSE biology.

Can't believe some people think to help a hypo you need to give MORE insulin 😱

this is why first aid courses should be compulsory even for the really really stupid.

a diabetic collapse needs sugar. Low insulin is not an emergency.

and yes, school level biology!!

My son is type 1, only one in his school, he is 9 and had it 2 years. The comments are ridiculous from people who have no knowledge, "are you worried his sister will catch it?" "Will he grow out of it?" "Did he eat lots of sweets?" Urgh. Thankfully, not from medical people. The dentist did start to lecture me when my son told her he ate sweets late at night (haribo for hypo's) and I tried to explain. She said he should clean his teeth after, I asked her if she could explain how I could lift 80 lbs of dead weight half asleep child and make him.clea his teeth?? Ffs.

Could I please ask though, to the adult ladies who have had this condition a long time, how are you doing? Sometimes I get so emotional over it and panic as everyone loves telling me the horror stories and how they know someone who died etc I keel thinking if we do our best, me and my son, the he can live a long and happy life.

Wow. This is SCARY.

As my username suggests, I'm a nurse. I teach practical nursing (LPN; equivalent in the UK would be a state enrolled nurse). I'm very careful to teach about both T1 and T2. I explain it using a lock and key analogy:

The cells are locked. Glucose wants to move into them. Insulin is the key that unlocks the cells.

In T1DM, you have no key. The solution? Give the key (insulin).

In T2DM, the lock has changed. It's now larger, so we need a bigger key (more insulin) to open the lock. The solution? Change the lock with medication to make it smaller, or increase the size of the key (give medication to increase insulin secretion, or give insulin itself).

Interestingly, I read recently that there is some evidence that there are actually different subcategories within T1 and T2. Usually these have to do with the risk of complications and the ease or difficulty of getting the blood glucose under control.

I don't know what's available in the UK, but here we have some exciting newer options. One is the insulin pen. In my area this is now standard in hospitals and many patients use them as well. Your insulin comes in a cartridge that's either already in the pen (disposable pen) or can be inserted into it. You attach a tiny needle to the top of the cartridge. Then you dial up the dose on the bottom of the pen. Pull the cap off the needle, push it in, and just press the plunger. When you're done, just unscrew the needle and put in a sharps container. Some pens even have a digital display that records the last couple of doses of insulin, so that if you use a sliding scale you can see how much you're taking. Very easy for patients and the needle is tiny so pain is minimal. We also are getting technology that allows for continuous glucose monitoring through a probe inserted under the skin. The patient and provider can then see how the patient's sugars are doing and can adjust insulin accordingly.

I'm sorry your providers have been so poorly informed. This is appalling and frankly disgraceful IMHO.

I'm still alive black it's just part of life and although it's constantly there in mind I don't consciously think about it if that makes sense? It's just what I have to do. Teenage years are the hardest with drinking etc but things have changed soooo much since I was that age (on two injections a day not sure how I managed to keep any control). I try to embrace it and be healthy, ensure my dc are healthy. Other days I eat a shit ton of crap but I still maintain control. I have two dc who get jealous when I'm eating haribo

agnurse those pens have been used here since I was diagnosed 19 years ago. The once that store the last dose are relatively new though (a few years). I have a pump and it's the best thing ever for me. I wish I could afford a libre or cgm but no chance right now. It is being predicted in m area but my control is too good to get one if it ever gets accepted by the DVLA then my consultant said he will put me forward for one (I work in the community so do a lot of driving)

DH has type one, his strapline is "no I didn't get this by eating too much cake". He wishes people wouldn't buy him disgusting "diabetic" food too.

BlackWatch you could always brush his teeth in bed?
But if he's anything like DH, he probably needs/wants someone just to sit with him while he comes round anyway.

DH hasn't had his THAT long (diagnosed in his 30s, but that probably means as long as some of you). He's not that bothered by the gangrene/blindness horror stories but he is prone to low mood anyway and having a series of out of control days makes him quite low or anxious.

DH has had it for over 40 years (diagnosed at 9 months) with no major complications. All he's heard the last 8 years or so has been how he should go on the dafne course. Eventually he gave in and went, just to tick the box. He ended up almost running the thing and came home really quite worried about the advice being given to the newly diagnosed.
He also gets really frustrated by medical staff who don't fully understand type 1. He's had some great staff too though!

I have type one and I feel your pain