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Discussion in 'Type 1 Diabetes' started by bbyyisa, Jul 1, 2019.
I was a pharmacist, but now retired. I had to go over to the local health food shop and tell them that they could not "cure" type 1 diabetes with supplements , and that without insulin a type1 diabetic would die. That was scary.
Also I had a long conversation with a local GP who came in with prescriptions for insulin for him and his daughter. His daughter was diagnosed at age10, he was diagnosed a few years later, in his 40's. He was as thin as the proverbial lat. He had a theory that eventually, we will find that it (type1), is caused by a virus damaging the pancreas. They already know that parvo virus in dogs does that. The damage is irreversible, and although dogs can be given insulin, they are usually euthanised. (No NHS for dogs). We had a dog that got that, it was horrible the way she lost all her weight and was really ill.
There is a huge amount of confusion out there about the different types of diabetics, the general public does not understand the differences, and with all the publicity about the low carb diet, think it can be reversed. If you are type 1, please help educate, especially people you socialise with and work with. If you have a hypo, it could save your life.
I am type 3C and fully understand and sympathise with your frustration the total lack of information and knowledge with some "professionals" is outstanding. Good luck with your nurse and I hope you can improve her lack on info
I do have a dog that has diabetes and she is thriving! Perfect weight, although she does have a few immune issues, she was rescued by an organization and had been abused. Although since I am a type 1 it is probably easier for me to deal with her diabetes. When we got our gal I knew/know 3 other people that have diabetic dogs currently and they all are doing well!
I am only saying this because it really isn't costly, they are put on NPH insulin 2 times a day, although I give mine humalog adjustments too. But NPH is either $25 or $35 a bottle so the cost isn't bad. I believe if I remember correctly 1 out of every 300 dogs, similar to people get type 1 diabetes, but only about half survive when originally diagnosed. So it's about 1 in every 600 dogs out there that have it. ( in the US) We always run into other people at the vets with a diabetic dog too. Whether people can't deal with it is possible, but most of it is just they don't survive by the time it's diagnosed. You have to notice them drinking more water or in her case she just wasn't quite as perky so we had blood work done. She was in DKA.
But don't give up on your dog if they get it!!!!! They can thrive just as much as us!!!!
It’s getting a little better through websites like this but still a minefield of misinformation for a lot of people.
I was (miss) diagnosed as type 2 several years ago and would return to my doctor to advise I was still feeling unwell.
I bought a meter and test strips and told the doc that I was going to start checking my bloods.
That resulted in the meter being pushed back at me and being told it was a waste of money as I was (only) type 2.
When returning the following year for more advice I was told just to double my dose of metformin.
Then the weight loss started. I was only 11.7stone to start with and never had a bmi over 25.
I lost over two stone and was under nine before I was told I was type 1 by the endo at the hospital and that I had been type 1 for some time. I was suffering from dka and had been traveling through Asia and Europe on holiday on the wrong medication from day one.
I’m obviously on injections now of Levinir and Fiasp.
Really wish there was a better understanding of our condition from GP’s and Schools but I’m hopeful of things improving over what some of us had to go through already.
Take care of yourself.
I am a type 2 but have recently been diagnosed with acute liver failure made worse my the medication I was on. I now have to inject insulin. In hospital the DSN told me that I was now type 1!! I have seen dieticians, DSN’s, specialists and consultants and have to say they are all useless! My best source of information is my sister who was diagnosed as type 1 four years ago when she was 51 and nearly died. X
This thread seems to have gone from "how do I cope with misinformation?" to "here are my complaints about how I have been misinformed".
The first stage in coping is understanding. Remember that GPs may only have 2 or 3 T1s on their lists and they were trained at a time when there really was a lot of misinformation. Many, but not all, do try to keep up to date but with a complex field where even the specialists often get things wrong, where information is very rapidly developing, where new techniques such as using CGM (even on dogs in both USA and elsewhere) are developing vast amounts of complex data, it is not surprising that many healthcare providers are struggling.
We have to understand that a lot of us need to educate ourselves in our particular needs.
It will be some time before we can develop artificial intelligence systems that will work effectively - but we are working on it and there are current trials of systems such as BigFoot.
Till then, the best treatment for PWD may well be self-education. We have to recognise that we need to use our own intelligence.
How do I deal with misinformation, normally I ask questions or answer someones questions. A guy whom I work with, has type 2 diabetes and wanted to know why I test myself as he only does if he feel a little 'off'( under 4 reading) he thought my type was the same management as his, he is on tablets.
I'll only try to discuss, or on rarer occasions, educate those who are genuinely interested. I run into it now and again but most of the time they're not interested in correcting their misinformation, just 'helpfully' telling me what I should or shouldn't be doing.
I can't blame them - I knew nothing of this condition a few years ago and know nothing or very little of some of the conditions others in this world live with. A little less preaching to everyone around us in this world would go a long way.
That one's scary because it's likely to be exactly the wrong thing to do, with a high chance of being lethally so.
Even the so-called 'experts', specialist Diabetes physicians, seem to be out of their depth!! I was diagnosed T2 in 2000 at age 50. And, having suffered drastic weight loss was prescribed insulin in 2005. Incidentally, I have never been what is defined as 'clinically obese' - which isn't actually all that overweight!! I was pretty sure I was T1. And have battled since 2005 to get the experts to undertake whatever tests exist to establish whether you are T2 or T1. For many years I was told there was no such test. Which I found pretty incredible. Finally, in late 2018, after 13 years of agitation, and following a change of consultant, I'm told there ARE tests and get referred for them. FYI the tests ere C-Peptide urine and GAD antibody blood. The GAD came back "Positive GAD antibodies consistent with type 1 diabetes mellutis - above high reference limit". Hooray, done it, finally established that I am, as I thought (well knew actually) T1. Only took them 13 years. So never mind the nurse, even the specialists seem to be confused. Or incompetent. The specialist who refused to accept that I was T1 for 12 years and told me there were no tests to establish type, should, in my opinion, be struck off. Unfortunately he is still there, active and probably still mis-informing and mis-diagnosing people. which is depressing. So I appear to be late diagnosis T1 ...... at age 68.
They do - even the diabetes specialists, never mind the good old GPs on the front line. See my post below!
If you believe you specialist should be struck off, you should make a complaint about them - to the hospital and (if in the UK) to The General Medical Council
@Knightrider that's the thing you can't even count on specialists, which is why I try to warn everyone that sounds at all like they could be a type 1. My uncle died from type 1 so when my symptoms first showed up, I swam 75 laps at a gym 5 days a week, was a vegan and ate very healthy and I asked if I could be a type 1. My doctor at the time told me that no you wouldn't respond at all to the medication if you were type 1, talk about misinformation! The specialist just dismissed the idea and said no you're not type 1. I was lucky as the medications made me sick so they switched me to insulin fairly early. It wasn't until I switched doctors and a new endo that they tested without me even asking or telling me they were and I got properly diagnosed. It's just scary how many doctors are misinformed too. I'm hoping it's getting better, but I'm not so sure.
Hi my dear,
you have all my sympathy. Here is something I can suggest out of my experience (a long experience, as I've lived with T1 for 35 years now). I'm telling you what works for me, but of course you may chose otherwise. So please don't simply follow what I'm writing here, should you feel like it, but do think it through with your parents and take their advice first.
Ok, here we go.
a. Use the name of our condition, not the name of one of its symptoms. Our disease has a perfectly honest and short name, which is BCA (try and google this up). Diabetes (chronically high BS) is a symptom of BCA. And of oh, so many other conditions! I always use the name BCA with dumb people so as to send them the first and most important message: please realize that you don't know anything about it. It's something totally unknown to you and you have to learn a lot about it before you even think of telling or doing anything about me.
b. Then you can say, like, 'chronically high BS is a symptom of my condition. That's why some people call it T1 diabetes. But this is rather inaccurate.'
c. To explain the difference between T1 and T2, you may like to try something like this: 'T2 is something a T1 simply cannot have. I will never get it, not even later in my life. It's outright impossible, because BCA-affected people actually lack the part of the body which gets impaired in T2.'
I usually try to stress this further and my favourite example is: 'You can compare T2 to varicose veins and T1 with no legs at all (my 'legs' having been cut off by my guardian angel – immune system – when he went mad). T2 and T1 share a symptom: they can't walk well. True. But while 'varicose' might get better, there's no way a T1 will get their 'legs' back, no matter what they eat, drink, do, stop doing etc. They will always need crutches (insulin shots) to walk around.'
I hope this can help somehow. A hug, and best wishes!
I tried googling but there were 500 alternatives for BCA, so what does it stand for? - just curious.
Scroll down to this bit
Fatty streaks and glycosaminoglycan accumulation in diabetic mice fed a cholesterol-free diet, and intralesional hemorrhage in the BCA of cholesterol-fed diabetic mice
Only link I could find a mention of BCA in diabetics, and that was in diabetic mices.
Or it could stand for Building Codes Australia.
Around here it stands for Berkshire College of Agriculture.