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?

Sympathy OP. I too have been t1, for over 40 years, since aged 1.
I've had some stupid things said to me. Some, by people who should know better.

At pump clinic today I found out that my consultant has retired. She's been my consultant for 16 years. 2 pregnancies. I'm in shock and quite upset.

Hey Oblomov I'll be really sad when my consultant leaves I think he's got a few more years yet (hopefully!)

My levels are all over the place at the moment but I'm finding it too hard to have a period of fasting and testing. With two dc and work etc it all just feels too much

I'm honestly shocked by these awful stories. HOW IS THIS ALLOWED TO HAPPE ?!

I work for the NHS & my specialism is
1 pregnancy
2 clinical trials
3 endocrinology

I work with a really skilled team - there is me, 3 endocrinology profs, 2 obstetricians, 2 dietitians, a diabetes specialist nurse & 2 diabetes specialist midwives.

We do preconception and all pregnancy care for Type1, 2 & GDM women & also offer closed loop in pregnancy systems we LOVE our jobs.

Most of the 'professionals' mentioned on this thread should be shot at dawn.

Hey spotty.
I have been struggling similarly. Poor us, eh?

BlackWatchBelle a little boy with Type 1 I know idolises Nacho - a Spanish fooballer who plays for Real Madrid (so has won la Liga, Champions League etc) and scored in the World Cup this summer. RM also have another T1 diabetic player whose name I don't remember.

Hey everyone!

My husband is T1, diagnosed just under 3 years ago at the age of 34. He was loosing weight for a while and when I finally got him to the docs his sugars were 29. He Had lost about 3 stone!!

Doc sent him home with a blood test form for a fasting blood test for the Monday as it was a Friday!!!

Luckily doc must have come to his senses and called later to say he needed to go to hospital. Off we headed and met a doc who gave us an hour prep talk on how to inject and test and to come back on the Monday morning.

Since then he has seen a different doc at the hospital each time he has been, all pointless really. Had a diabetic nurse for the first six months then she left then didn’t get allocated a new one. When he asked about it, he was told he had good control so wouldn’t be getting a new nurse!!

Original nurse questioned why he was getting the libre as he didn’t need it and he only needed to test 4 times a day.

The only thing we have got from the hospital is that you need to take responsibility for your diabetes and do your own research!!

GP’s mustn’t have many T1’s as they are really interested in his condition when he visits. They’ve asked many questions about the libre and are hoping to push it for funding in our area.

Yeah they told me I only needed to test about 5 times a day.
So... in the morning, before and after meals, before bed AND every time I drive? I’m getting that to quite a bit more than 5 and that’s the absolute minimum as far as I’m concerned.

Re trial net and antibodies - it’s all quite experimental as far as I know. They now know that t1 diabetes can take years and years to develop and develops in three stages: 1) presence of antibodies, 2) presence of antibodies and some abnormal sugars but still asymptomatic and 3) frank diabetes.
Stage 1 can last a long time. My understanding is that with only 1 or 2 antibodies you may not go on to develop t1 as long as nothing (and we don’t really know what but possibly viral) quickens the assault on the beta cells. I think once three or more antibodies your lifetime risk nears 100%.

There is some anecdotal evidence to suggest high dose vitamin d and omega 3 plus DHA can slow down the demise of the beta cells, along with reducing high carbs foods as every time the blood sugar goes over about 8 beta cells are killed.
Trial net does run prevent studies but it depends on your age / area / anti body status. If you have a t1 sibling your risk is statistically 1 in 10 of developing diabetes yourself. It is worth speaking to trial net if you’ve had positive antibodies and seeing if they are running any prevent trials. They will also offer a glucose tolerance test which will show if you are exhibiting any abnormal response to carbohydrates.

AgathaMystery With a couple of exceptions, the diabetes teams I have seen have been great. I have had problems with people who aren’t specialising in it, like a GP. If it is at the GP surgery where I have been given wrong information or advice

So sorry you've had crap advice in primary care. It's not right.
However, as a good GP who's worn down by the default attitude that we are all a waste if space, it's depressing. Threads like this are the reasons that hoards of us are just throwing in the towel and leaving the NHS altogether. It's a real shame.

@Fortybingowings - I don't think most people with type one mind if the GP or other HCP says to them, "type one isn't my speciality" and then either consults their specialist team or listens to the patient. It's the assumption that the HCP holds the superior knowledge of a condition in which the patient needs to be the expert and self-titrates continually that is frustrating and downright dangerous. The fact is, people with type one are significantly more at risk of DKA and severe hypo when being treated for an unrelated illness. A child a month dies in the UK and another suffers permanent brain damage because of undiagnosed type one, usually after multiple GP visits. Many GPs are not following the protocol for diagnosing type one, so 25% of children (and many adults) are in DKA at diagnosis. The constant assumption of poor control, the lack of understanding that mild hypos a couple of times a week are normal and to be expected, the lack of support for intensive testing recommended by the NICE guidelines.... All these things are utterly wearing and I know that I have to work really hard to find the balance with my son between him develop a hatred and mistrust of all HCPs (other than his specialist team) and making sure that he will be able to keep himself safe in the future.

There is another thread on here where the poster is trying desperately to avoid her DP being hospitalised for his severe mental illness because of the threat to his physical health due to his diabetes. This is a real problem and I am terrified about my son being hospitalised for something after the age of 16 when I won't be able to be with him constantly to make sure that he and I are able to keep control of his T1D management.

Thanks so much, Hoarder, that's all really helpful. Funnily enough, I was on high dose vit D and omega 3 for years, as they help another health condition I have. I have fallen off the wagon since having my DD though (as has most of my self-care routine....), so it sounds like I should get back on it.

As for intake of carbs, that's very interesting, and kind of makes sense, if disappointing. I remember being so pissed off about the antibodies, that straight after the appointment with the endo I rushed out to a cafe and ate the biggest slice of the stickiest, gooiest cake they had. It felt like a big slap in the face after all the years of denying myself cakes, biscuits, chocolate, etc, in the hope of staving off type 2 (also in the family). Since then, I think my psychology has been that if I'm going to get type 1, I may as well indulge now while I still can. I need to sort that out. I did have a gtt while pregnant 3 or so years ago, and that was fine, so that's encouraging.

@fortybingowings I think @t1mum3 puts it very well. Sorry if this thread has upset you, although you can probably see why so many Type 1's are frustrated.

I don't expect a GP to know the ins and outs of Type 1 to the extent a diabetes nurse or the like would, they are GP's not specialist's in diabetes. Its unreasonable to expect someone to know everything about everything, and I imagine a GP is expected to be able to cover a huge amount. However, and I have already said this a few times, I would expect them to know the basics and, if they don't know, ask someone who does!

I, and others on this thread, have been given advice that is wrong and / or dangerous - certainly not from any medical guidelines so it must have been guessed at or invented! Which is dreadful and actually quite frightening looking at, just from this thread alone, the extent of the problem.

Fortybingowings I'm really sorry you're feeling like this. Fwiw, I wouldn't be a GP for twice the salary you get. It's a very difficult job, with a huge level of responsibility, and never enough resources to do what you feel is a proper job, I would imagine. I have every sympathy.

However, the posters on this thread have highlighted some very dangerous instances of HCPs being worryingly ignorant of how to treat type 1, coupled with a dangerous assumption that they know best. Surely you don't think this should go unchallenged, given how dangerous some of these ideas can be to people with type 1?

I wonder if you are suffering from stress or burnout, if seeing a thread like this can trigger a desire to leave the profession (though I'm sure it's an accumulation of things, rather than just this one thread)? Is there any help offered to GPs for this? I hope you could make use of it, if so, and maybe make changes to your working hours/environment etc? We desperately don't need to lose good GPs, and I for one really don't want HCPs to be feeling so demoralised. I hope you can find a solution.

My FIL is T1 and has been for 50+ years, however when he was diagnosed there wasn't the same education and awareness on carb management - and he is now into his 90s and just can't process the new information that is out there - so he tends to live on carbs. For him 8 is low, and at 5 he'd be unconscious.

He keeps being hospitalised for various things, and it's taken him going hypo and collapsing on the ward for them to believe my DH when he says that his DFs readings need to be higher!

Frighteningly, his evening carers (who dish out his medications) found him hypo once and were trying to force him to take his insulin - thankfully he had just enough awareness to refuse. DH did raise it with the management team, but at the end of the day the carers don't have the training or knowledge.

Coupled with his vascular dementia, a paranoia complex and various other health issues it is a constant worry - and the lack of knowledge by the various healthcare professionals is frightening.

ShovingLeopard - it might be worth getting in touch with Trailnet at Bristol and talking to them about any options. (Just google Trialnet Bristol and they'll come up). Any time I've spoken to them they've been super helpful.

Also I completely understand your sister's perspective on operations. DS has had to have a couple of things done lately (nothing to do with Type 1) and I was HORRIFIED at some of the advice he was given by the medical staff - some of it was downright dangerous. In the end I insisted on staying with him to manage his pump. I think that's what's so freaky about the whole thing. I can just about cope with the ignorance of the general public but the lack of knowledge amongst medical professionals is terrifying.

OP you are definitely not BU

I was diagnosed with t2 16 years ago by my gp but struggled to get it under control. Was put on insulin at hospital during pregnancy and it was so much easier to manage (although obviously I had to keep an eye on rapid pregnancy changes etc).

Then it started to get worse again. Recently the consultant has told me that he thinks I originally had t1 and have now developed t2 (well, insulin resistance) on top of this. Other consultants had thought I was more like a t1 in the past but as I didn't have antibodies they'd dismissed it. I've since learned that antibodies are not present in some (19% I read recently) of t1 cases and antibodies can disappear over time.

I admit before I had it I said the "id never be able to inject myself" to friend with diabetes. Feel bad about that now, obviously. I think to an outsider it's terrifying but in reality obviously you have to get on with it.

Thanks, Adeles, I will get in touch with them and see what they suggest.

Reading this thread again, I'm wondering if there's anything that can be done to raise awareness amongst medical professionals (starting with GPs, but then on a wider level). Some kind of simple campaign along the lines of 'know the difference' so medics are prompted not to make assumptions about 'diabetics' and their care. No idea how to go about this but will think on it.

The points Horder makes above reminded me that a friend of mine has teenage twin boys (non identical), one of whom was diagnosed with T1 when he was about 12. At 16 they participated in a study on twins - his brother tested positive for the antibodies but has never gone on to develop it (he’s 19 now). The individual variance of each body must make it so difficult - this goes for management too, I guess.

I've contacted Bristol hospital and they are sending me the info on trialnet.

Have also been phoning round various pharmacies trying to source the cheapest libre sensor and I really need to sort out my basal but I'm not fasting or waking up every two hours overnight to test unfortunately the cheapest places are over 20 miles away

Wreck try super drug they seem to have them Cheap or Asda pharmacies

Have had quotes from both but they're both an hours drive away so have to factor that into the cost too. Superdrug are a couple of pounds cheaper than Asda but Asda is free parking and I can combine it with the weekly shop I suppose. I can't afford any more than one anyway. And even that I can't really afford

As someone that doesn’t have diabetes I really feel for all of you that have experienced frustrating care. I remember when I was about 10 or 11 I was on a school trip with my friend that had type 1. We were on a long walk in rural conditions and she knew she was struggling and heading for a hypo. She asked the teacher for something sugary and the stupid bint said no and she needed to wait as it was not time for eating. She was then trying to hurry her on as she was holding up the group. I remember pleading to let her have something sugary to eat and she clearly wasn’t well. She ended up unconscious and in an ambulance. Nowadays she would have undoubtedly sued but I remember it being brushed off by the school.

@agnurse people with type 2 diabetes can go in DKA for many reasons. DKA can be common in elderly patients who have been diagnosed for many years and may have beta cell failure.
There are patients who are known as ketosis prone type 2 diabetes.
Also DKA can occur in patients on are on certain medications for their mental health.