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 thought Steve Redgrave was type 2

Just to make things very confusing:

People with T2 CAN require insulin. Insulin dependence doesn't necessarily mean T1.

The biggest differences have to do with complications. People with T1 can go into diabetic ketoacidosis if they're not controlled. The brain normally requires glucose to survive. If glucose isn't available, the brain can adapt so it can survive on ketone bodies, which are produced from incomplete combustion of fats. The problem is that these are highly acidic, meaning that your blood pH becomes more acidic. Neurons are very sensitive to changes in pH and metabolic acidosis causes coma (hence the term "diabetic coma"). 20% of T1 diabetics initially present with DKA.

T2 diabetics don't usually go into DKA for reasons we don't fully understand. They go into something called hyperglycemic hyperosmolar nonketotic syndrome (HHNK for short). They don't become acidotic but they do experience high blood sugar.

If a person with T2 diabetes presents with a very high blood sugar they may go on insulin right away because it's what's needed to bring their blood sugars down. It doesn't mean they are T1. Rather, it just means their insulin resistance is so great and/or they produce so little insulin that oral meds just won't cut it.

I think Redgrave and Halle Berry are t2.
I’m sure I read somewhere that Halle Berry was ‘cured’ of her diabetes .

I have a 70yr old cousin who I was always aware had type 1. We grew up with his condition and his mum's attention to detail on the diet, even 55 yrs ago. You couldn't get any healthier eating.

Four years ago I was exhibiting high markers on the diabetic spectrum. I also had gestational diabetes with one child. I managed with diet to reverse a type2 diagnosis. Occasional forays into unhealthy eating causes spikes & problems.

I'm commenting because our health region had a rolling 4hr workshop to 're-educate' possible type2 potentials from having to be medicated to manage condition.

The workshop organisers were keep-fit instructors. They blatantly announced in the lecture that there was no, no difference now between type1 & type2. It was progress in research that allowed them to stand by this announcement when I challenged them!!!! They made it all sound so simple, and we were all stupid if we didn't adhere to their instructions. Thank fuck I'm capable of at least basic critical thinking.

Christ on a fucking bike! You couldn't make the stupidity collected on this thread. I could go on, but the general level of some understanding by some is already covered in this thread.

Forgot to add, my brother is type2 and requires insulin injections.

Im type 1 and have been since being a child. I struggled with weight for a while when going through a PCOS diagnosis and my PCOS Dr just couldnt get that i was typw 1 not type 2 and kept telling me once the PCOS was being addressed and i lost weight i could lose the diabetes too. No matter how many times i said im type1 not type2 she just couldnt get it and fully assumed i was type2 cause i was carrying some extra baggage at the time!!!

This is winding me up more and more.

I bet a lot of the advice, crap advice, is given by someone who doesn't actually know for sure and is hence making it up. I find that, in a medical capacity, inexcusable. Surely if you don't know, or are not 100% sure, you either find out or get the patient to access someone who does know.

Medical appointments now make me quite defensive, regardless of what they are for. I have been given so much bad advice about diabetes that I cannot automatically trust someone with anything else either.

Also, and this is more of a petty thing in the grand scheme of things, when they do manage to grasp the idea of Type 1 and want to give advice, I get extremely pissed off by the automatic assumption that I am badly controlled. Like I have said several times, I have no evidence to show I am badly controlled, it is just often automatically assumed.

The other week I had to get extra supplies as I was going on holiday. The woman I spoke to, a nurse practitioner, asked me if I was 'going to bother taking' my 'blood testing kit' as I was asking for more strips than normal. I looked at her and asked how she thought I managed to have an HbA1c of 6.0 / 42 if I don't test, I asked politely I'd like to add. She didn't answer that, but instead said that 'many diabetics are badly controlled and don't test.' I replied that 'a lot of the medical professionals I see have given me terrible advice but you would be offended if I automatically assumed you too were one before I had even spoken to you, so it would be nice if you could do likewise with regards to my diabetic control.' It was all exchanged in a nice polite and almost jokey manner, but I do hope it sunk in!

When I was in hospital last I was informed by a nurse that the whole menu was 'diabetic friendly' it was very carb laden and trying to carb count was a nightmare (I even bought my digital scales with me)!

Scaramoose. I get extremely pissed off by the automatic assumption that I am badly controlled

^^this angered me! Why?

My brother is an arse. He's had stent or stents put in his heart, but continues to smoke & lives of take-aways. He's type2, on insulin injections, but uses the insulin calculations to shovel shite down his throat. A whiff of a vegetable causes him to gag. He also, strangely, takes great pride in logging his blood tests & takes his log along to his clinic/specialist appointments. The nurses fawn over him. Praise him, mollycoddle and make him feel superior. My only consolation that one on his health team thinks he's a total arse, and is what's partly wrong with our health service. Whilst I've had to go NC because he's an example what gives the rest of us 'bad press' and "you don't seem to be managing this situation very well Mrs Yoksha". The whole ethos surrounding this situation gives me a headache.

Abbey thank you.

Its interesting to see how adults with T1 are treated. It makes me more driven to help teach my son how to best care for himself and build confidence in his knowledge. We already have had 2 serious incidents at his school where untrained staff thought they knew better.

Hoardernomore. - yes, DS is type 1 and we did trialnet when it was offered at a Children With Diabetes (Friends for Life) weekend. DD came back in the clear. We repeat it every year. Tbh I think it's worth it because if they come back with some antibodies then I think there are things that can be done to try and stall the onset. Also taking part means you're helping the project with their research. Off to another CDUK weekend in a few weeks time and DD will be tested again.

I also forgot to say that I had my insulin pump attached to my arm once in an exercise class, and the fitness instructor shouted out, in front of everyone, 'a few more of these classes and you'll get rid of your diabetes'!!!!

Digdeep. This is stupidity in it's extreme. OMG, WTAF!!!

@Digdeep I used to be very open about telling people I was diabetic but your example is an excellent illustration of why I now either launch into an explanation of Type 1 (and always call it Type 1 diabetes as opposed to just diabetes) or don't say anything at all. I also find that it is assumed you are a 'diabetic on insulin' which means you 'have it really badly', cue lots of comments about too much cake etc.

I once felt hypo in a busy pub and asked someone if I could go in front of them as I 'needed some coke because Im diabetic.' The man looked at me, amused, and said 'that might be why you're diabetic, love!' I would like to say I then came back with a scathing but incredibly witty comment, but I didn't. I actually felt like crying!

From all of your comments, I'm sure there's a lot of sexism going on here. DH being an older, professional bloke tends to get most of the HCPs believing him and rarely gets the "are you sure you should eat that" comments. It seems men are allowed to be proper expert patients. or perhaps people have heard him bore on about it and don't want to hear it again.

Though people do still think he got it by eating too much cake.

@drspouse Oh good, sexism too!

One of the most poorly children I have ever cared for (paramedic) was a toddler with onset of type 1 diabetes.

Mother had taken them to the GP the day before with 2 week history of lethargy, nausea, vomiting, diarrhoea, increased thirst, and increased urination. GP told mum to "take them home and give them diorylytes". Next morning mum took little one back to GP pale, short of breath, less responsive. We were called at that point. By the time we arrived GP still hadn't done a blood sugar test. By this point child was grey, floppy and unresponsive, with classic increased respiratory rate and pattern for dka. Blood sugar was in the 20s. We rushed her in as fast as we could, but she went into cardiac arrest as we arrive at a&e. Fortunately the recieving a&e team and paediatric crash team were totally amazing, and she survived.

It was years ago, but I still remember someone reading out the GP print off from the previous day's appointment that we had brought in with the child (but obviously not had time to read) and the listed symptoms where almost identical to the list in the ambulance technician basic training manual for onset type 1 diabetes. Yet the GP had missed it!

Apologies for misinformation about Steve Redgrave and Halle Berry - I honestly thought they were T1, but obviously not. Oops.

@Cyw2018 That is a more dramatic version of what happened to the little girl I posted about a while back. She was ill and had a blood test, it was very high, so the GP said he'd make sure she was seen by an endo 'within two weeks.'
Luckily, her mother took her to A&E the day after as she was getting worse and they diagnosed and treated immediately (and the consultant was amazed she was 'still standing' considering the level of her blood sugar and presumably ketones

Shockingly there are still children in the UK who die of undiagnosed t1 diabetes. People who are sent home and told they are overly anxious. It is crazy. A simple and cheap test that is painless and takes seconds can rule it out.

Is it basic and obvious to us as we live with it, but weirdly obscure and easy to confuse with numerous other conditions to a lot of GP's?

I find this hard to believe but there seems to be a lot of anecdotal evidence to the contrary

This thread is really informative- I'm not diabetic but I work as a medical welfare officer in a school and have three type 1 students. I've done so much research and training since starting in this job, largely off my own back, to make sure I can offer the best support and care possible. It's really scary hearing some of these comments from medical professionals! There definitely needs to be more general awareness, especially of the differences between type 1 and type 2

@Albatross26 I am glad someone in your position is reading it! As with a lot of the AIBU threads, I did half wonder if I'd be repeatedly told I was (as often that's how these threads go!) and it was my own fault for expecting GP's to know, or whatever. Its now become more obvious how bad the problem is. I thought my experiences were bad but some of these are absolutely shocking!

I do have an issue with the association between 'diabetes' and obesity etc (and yes I do realise not all Type 2's are unhealthy or obese) and hate the fact that the two have the same names. People are often ready to sneer at someone who is overweight so if they are an overweight 'diabetic', especially one on insulin, its like open season. Its horrible having people assume that you are one of these rampant cake eaters who are bankrupting the NHS!

However, I also think it is crucial that the names are changed now as even people with medical training seem to be confusing the two. It is often automatically assumed you are Type 2, treatment and advice for Type 2 is clearly given to patients whose notes have not been read properly and this must be both confusing and extremely dangerous for the newly diagnosed. As I have said before, if it wasn't for taking control of my condition myself and making sure I knew what I was doing, I am convinced I would not be complication free and as healthy as I am today.

My sister has type 1, and I totally recognise all the comments about medical staff, who should know better, coming out with dangerous ideas. She has had to have several operations, for unrelated issues, and now refuses to go in unless management of her sugars is left totally in her hands, because experience tells her the staff on the general wards will be clueless.

On another note, I was tested for antibodies a few years ago, and it was found that I had antibodies to my beta cells, though not the GAD ones. I was told at the time that I may be developing type 1, slowly, but that there was nothing I could do to prevent it. Some of the comments on this thread lead me to believe that knowledge may have moved on from that. Is there anything I can do to try and stave type 1 off?

I can empathise with your sister! Scary isn't it? I managed to get DH, and only DH, in charge of my pump when I had a c-sec. The staff eventually were brilliant about it, but it felt like an uphill battle to get there.

Sorry, I am clueless about the antibodies thing. It was this thread that made me realise there was such a thing, I had no idea before and am now fretting over whether it would be a good or a bad thing to get DS (he's 6) tested if it was available near me