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?

Trial net do have prevent trials running for certain age groups at times. It’s more delay than prevent.
If either of mine were positive I would certainly look at reducing carbs (not strictly but i definitely would try and reduce the amount they eat as they eat a LOT of carbs) to take the strain off the beta cells.
I know there have been trials with anti inflammatory drugs that are usually used to treat arthritis.

It is extraordinary that medical professionals don't understand the difference. I am a layperson and I understand the difference and have done for years decades. Is it that hard?

Digdeep79

I was going to say, try having Addison's Disease

@HoarderNoMore I had the conversation about statins too! My cholesterol is fine, great even, but the GP told me I should go on statins.

I asked why and she said it's because I am diabetic, and my cholesterol is 'spot on'. I said I was not prepared to take medication for an issue I don't have, medication that also seems to give a lot of people nasty side effects. She replied that we could 'try different types of statins and if you're still getting side effects after three months we can change to another type till we find one that works for you.' Erm, no.

Yanbu op, even my GP admitted he didn't know much about t1
I had to kick up a fuss to get enough needles and testing strips on my prescription.

DBIL has T1 diabetes. He has become better about his management but has an immensely high powered, high press job which means he doesn’t always eat regularly or well and exercise much. He’s quite overweight and has had enough serious hypos that he’s actually quite lucky to be alive.

His control is much better now he has sensors and a pump. BUT, SIL is so frustrated that on his miserly once a year checks the staff are too intimidated by his profession to ever offer him advice on losing weight and the importance of this.

Re pregnancy care I’m absolutely shocked that T1 patients aren’t receiving joint, full AN care from a specialist obstetrician and endocrinologist. GP isn’t equipped to deal with this and it should be routine.

@Satsumaeater I didn't think it was that hard, no! I have heard the excuse from doctors or nurses that they see so many type 2's that they automatically assume I am type 2 too. (Not only that, but that I am a badly controlled Type 1!) I think this excuse is pretty rubbish, the two types are very different.

I had one insist I had to be t2 because adults are t2 and children are t1.
Not true anyway as lots of people are diagnosed t1 when they are well out of childhood.
But seriously? Does she think every t1 magically becomes t2 when they are 18?!

I had great pregnancy care. Joint clinic with DSN, endo consultant and obstetrician every two weeks with four weekly scans and my dsn at the end of the phone whenever I needed her.
My GP checks on my every year but she just says how well I'm doing all the time and is happy that I see my consultant and dsn often enough (6 monthly each so four appointments a year). Oh and dietitian who I see with the dsn.

@MatildaTheCat I saw an antenatal team when i was pregnant, I just had subsequent issues with the GP's about the number of strips or amount of insulin I was then requesting. I had to test all the time as my BG was reacting very differently (and I was managing to keep tight control through lots of tests, but this also meant my hypo awareness close to vanished) and, as it does with non diabetics too, you need much more insulin as your pregnancy progresses.

The GP's appeared oblivious to this and told me that I only needed to test three times a day and that 'nobody needed' the amount of insulin I was asking for. A prescription was refused and I had to actually borrow some off a friend while waiting for another prescription (they insisted on me coming in for an appointment to discuss - I am not very confrontational but, my god, I was that day!)

@Hoardernomore - wow! That defies all logic!

I think a n email to your GP practice outlining this would be in order since there is a serious lack of basic understanding and retraining is urgently required. That advice could be life threatening to someone less aware than yourself.

Horrid condition and made worse by even professionals getting it so wrong.

@MatildaTheCat I ended up highlighting it a while later. I had another GP want me to come in for an MOT. I left a message at the reception explaining I recently had had one with the endo at the hospital. I then got copied into a letter the GP then wrote to the hospital 'out of desperation' (no exaggeration on either side) and asking for their help in contacting me. This was bizarre and I ended up writing to the GP, copying in the diabetic team, explaining exactly why I went to the hospital rather than the GP for these things.
The practice manager pretty much then brushed it off but I really hope that, behind the scenes, it was taken more seriously.

Not diabetic but I have autoimmune neutropenia
Doctor "that's a kids disease, you must be mistaken"
Me "Er no, that's why I see haematology every 12 weeks"
Doctor "adults don't get it" and then rings haematology to speak to consultant
Doctor "ah yes, autoimmune neutropenia"
Me
Doctor "well your levels are good so you don't have it any more"
Consultant nearly implodes pointing out I'm on meds to stimulate my bone marrow so I don't appear to have it but if I stop the meds I will again, drop my levels
Consultant "so if a diabetic has normal levels, they're not diabetic?"
Doctor "well of course not, that would be medication changing levels probably "
Consultant

People said to me they don't know how I can inject myself. I hate needles but I pointed out if I was diabetic I would need to and this is no different

I bumble along OK as type 1 it doesn’t get me down too much, until I have to have any interaction with a medical professional. I have such bad situational anxiety about it now I can’t go unaccompanied as I’ve been lied to, had oodles of misinformation and lost my driving licence for 3 months because of a lack of understanding or grasp of the English language. There is a big gap in knowledge, care and compassion when you move from children’s into adult care. My problems all arose when a GP couldn’t understand why my tests were all at random times in the day and told the DVLA my testing was inconsistent, whereas what I was actually getting at was that with frequent driving I didn’t always have beautiful before meals and 2hr after meals times for them to look at. I’ve also had statins thrust at me but managed to fight those off. Aside from when I was diagnosed I’ve never been hospitalised with it and with a T1 mother too it’s always been better to nod and smile and then largely ignore but it is very frustrating.

Just a few months after I was diagnosed with Type 1 I went for a "health check" at my surgery. Before diagnosis I lost a stone and a half in about 3 weeks, so when I started insulin I had gained most of it back. The doctor told me I had gained weight too quickly and if I lost it, I could get rid of the diabetes. I got told by another doctor that I should exercise more then I could definitely come off insulin... I was 19 and it was a tough, confusing time as it was, without all of that.

I have Type 1.5. It’s a subset of Type 2. I have an insulin pump.

I thought 1.5 was LADA - a subset of t1?

Type 1 here for 47 years
The stories I can tell ...
Sigh
I was 14 when diagnosed and believed doctors and nurses
My first was a fantastic endocrinologist - even injected himself to feel hypo and understand the symptoms, speed of recovery etc - God rest his soul
I was in having a gynae op - and was grateful to know that I was first on list so I could recover and balance bg by lunch
I was told to inject and said - oh, is lunch here already? And was called "greedy" and that I couldn't wait for lunch etc
I was very puzzled and said - oh - you are a trainee nurse aren't you - you haven't done diabetes yet - and god help me she blushed
Thank heaven I ignored her - and that was the days when your own medication was locked away and I had to argue to get hold of it when I needed it
The latest was my GP - I now know that I live in a borough that has mandated that T1 diabetics MUST be seen at the hospital - she wanted the money and said she could monitor me as she was a specialist - after a long time of no care (I was very naive) I had a heart attack and 7 years later now know that the eye injections I have to have now stem from my lack of control during her "care"
I took 4 cases to PALS and they upheld all of them - and I changed my GP and now have a pump - I've only had one for 4 years!!! FFS!!

This is really valuable feedback.

There is so much information and misinformation about diabetes out there and it is important to highlight when incorrect or dangerous advice is given. This “oodles of misinformation” (Lampygirl) is, as many of you have said, from the media, healthcare professionals and people with or without diabetes too (many love to comment on diabetes as you have noted).

Hoardernomore says “I sometimes think they should allow people to work in t1 diabetes unless they or a close relative have it.” You will find that a significant number do have that experience already but not sure this is the best way forward.

In general type 1 diabetes, antenatal care for people with diabetes, some complex diabetes eg active foot/ renal disease and, of course, anyone needing admission for diabetes should be provided by hospitals. We must do better with hospital care for inpatients too. There have already been a great many improvements in recent years (nationally collected annual data demonstrates consistent improvements) but harm from being in hospital still needs to be avoided. People should feel safe in hospital and certainly not “very much on edge because of their (staff) lack of knowledge” (GlassSuppers).

We need to educate better. A plea that rather than thinking “it’s always been better to nod and smile and then largely ignore but it is very frustrating” when interacting with a medical professional providing misinformation, please feed back in some way, to the person/ the practice or diabetes team/ Diabetes UK. By collecting these stories, we can target myths.

FrancesFryer. Yes the steroids go SO well with diabetes don't they?!?! Arghhhhhhhhhhhh it's a really shit mix!!!!!!!

I have spoken up when I have been given information that is wrong, I have also spoken up when it has been assumed I am Type 2 by someone who can't be arsed reading the notes. I have not, generally, found GP's in particular very interested. I can imagine it is very irritating for them being corrected by a patient but, as I have said on many occasions, I have been doing it longer than them! I have also added that I don't expect them to be experts, that's why I contact the diabetes team at the hospital with any concerns.

What is very worrying about this thread is that so many of us have had bad experiences, been given the wrong information and been treated by people who don't seem to have an even basic knowledge. I am lucky enough to know how to look after myself, and I honestly think that I would have had multiple complications and a history of hospital admissions if I hadn't taken control myself.

After the letter the GP wrote 'out of desperation' to get me to an appointment my endo later said to me that it 'was more about politics than patient care.' The response I had written to the GP pointed out that I had a track record of well within range BG, no history of appointments made for anything that could be down to bad control and nothing to suggest I was in dire need of his help. I added that this should have painted a far more accurate picture than the one he had decided on, it would be there in black and white. I also went into detail about the other GP who told me about the three tests a day, issues with getting insulin and explained that both of those examples show that the knowledge is not there. I heard nothing back. No apology, no recognition, no acknowledgement that there are gaps in the knowledge of those who are wanting to treat me.

This is probably why so many of us now 'nod and smile and then largely ignore'.

Digdeep79 and don't even talk about stomach bugs

46yrs as type 1 and a few bits creeping in.

But at 52 - I am not a fucking type 2 "because of my age- I can not b a type 1"

GP nurse - your HBA1c is so good you could think of stopping your insulin

Your baby was big because you are poorly controlled nothing to do with 6ft1 mum and 6ft5 ins dad and not one neonatal hypoglycaemic episode.!!

BlackWatchBelle - good luck to your son with the Libre sensors. They're the best new thing in diabetes so far, a real game-changer. I've been self-funding them for three years and today at my diabetic review my consultant told me I've been approved for prescription. I left with six months' supply, and can't quite believe it - it's like birthday, Christmas and lottery win all rolled into one! The information you get from your sensor makes a massive difference in how well you can control it.

And as for not letting diabetes limit your life, well, keeping good control of your sugars is the best way. If he's looking for inspirational role-models, then Steve Redgrave is a good place to start. I knew him as a child and he was a stroppy little git at times, but he was determined to make it big and being diagnosed as T1 didn't stop him. Gold medals at five successive Olympics...you can't argue with that. Theresa May is T1, as is Halle Berry, I believe. I think there's also at least one Premier League footballer who's T1 - I think a lot of people will tell him he can't do things because of it, but really, you can live a relatively normal life with diabetes once you know how to manage it.

I think the best way to counter the massive amount of misunderstanding and misinformation you encounter at times, even from people who should know better, is to make sure you're informed and understand your condition. When you do, and you live with it, you become your own expert in it. Finding a good team who you can work with makes a big difference too, and I am massively grateful for the support and help I get from mine.