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British man with type 1 diabetes to receive tests after coming off insulin (diabetes.co.uk)
47 points by alexee 101 days ago | hide | past | web | 44 comments | favorite



Here is the story from the Northampton Chronicle that is referenced but not linked to: http://www.northamptonchron.co.uk/news/doctors-now-80-per-ce...

Note that it is similarly without any substantive details. Not to be a naysayer, buuuutttt... knowing a fair amount about type 1 diabetes, I can suggest any number of possible explanations that are far short of "miracle." The most obvious one is that he had over-treated type 2 diabetes and increased physical activity is leading to an increase in insulin sensitivity that looks like a miraculous cure. Alternatively, especially given the late age of diagnosis, he might have Latent Autoimmune Diabetes of Adults (LADA), which is kind of like really slowly developing type 1 diabetes. The body naturally goes through ebbs and flows in relative efficiency and autoimmunity, so if he still had some functioning beta cells, a temporary period of reduced autoimmunity could allow those cells to resurge and produce enough insulin to support his body without the addition of exogenous insulin. However, that's unlikely to last if that's the case.

Again, not to pooh-pooh all theoretically good news, but... I see lots of miracle cures for diabetes in headlines, and none on the pharmacy shelves.


Thanks for this - think I should get tested for LADA when I get back home (Japan) in a month or so ...

But I'm in the U.S. right now: does anyone have any recommendations for a basic CGM setup that I could get off Amazon?


nope, they're pretty spendy.. If you want to see whether or not you're diabetic, get a cheap glucometer. You ought to be able to get one with 10 or 15 demo strips for under $20. check your blood sugar first thing in the morning after you wake up, and if it's over 100, you are pre-diabetic (congratulations!)


Thank you - I will get the strips at least.

Do you have a $ figure for "pretty spendy"? I really want to sort out the bouts of fatigue though, so in that sense I'm not that price sensitive.


You can order Free Style Libre (online), starter package for $200 or so (check their website). They probably don't ship to the US, as they're not approved there, so you'd have to use some mail forwarder.


Thank you! That might work for me - I could get it shipped to Japan or the UK.


Speaking as a T1D for nearly 10 years, instead of getting a glucometer, go to a lab and check your Hba1c levels.

The test is really cheap and is an indication of your glucose levels in the last 3 months. If that is over 7 mg/dl you're diabetic.

I sincerely hope you don't have T1D. Good luck.


Thank you for the recommendation about Hba1c and also the "Good luck".

This blog post on Hyperlipid

https://high-fat-nutrition.blogspot.com/2007/10/physiologica...

kind of relates to what you write: Hab1c is a more accurate indicator of diabetes than fasting glucose for someone on any form of carbohydrate restriction, which is me.

edit: s/that/than


I'm a programmer and I've had a type 1 diabetes for the last 21 years. It is one of the most complex things in my life to take care of when all of the insulin therapies don't really work that well and I don't wake up to the nightly hypos. Luckily I'm in the German insurance system and getting an insulin pump first and later a CGM. Already I'm using an NFC chip in my arm giving results to my phone and from there to InfluxDB and Grafana. Later with a proper CGM I also get automatic alarms which wake me and my partner if the sugar gets to low.

There are great open source systems for us technical people, but the tech is very expensive without an insurance and requires you to solder an extra device to get the values to your phone. At least with an NFC device you can wrap a smartwatch over it to get the readings automatically to your phone, rooted of course.


> Luckily I'm in the German insurance system... I'm using an NFC chip in my arm giving results to my phone

Poor you. If you were lucky enough to use the greatest health care system in the world, USA, you could also get the Freestyle Libre CGM but would be protected from the NFC data. In the US those data can only be read by a physician; patients do not have access to the readers. Oh I notice the disposable pucks that go on the arm cost more here on Blue Shield than I would have been paying with DKV in Germany.

(Fortunately you can buy the readers OTC in France if you have a friend with a French address and can speak French. Even in Germany you can only the hardware by prescription).


And xDrip Plus works, if having an NFC enabled Android device. Hardware is by prescription, but if you are able to get the chips, any NFC device works with proper software.

Of course you must know what you are doing. The readings should be calibrated every week with blood, but if you do this, your Android device with xDrip Plus is giving more accurate readings compared to the official reader.

REMINDER

Do not try to do any of this if not knowing what you're doing. There is a risk of dying if you follow wrong readings and take a wrong amount of insulin.


Fascinating work, thank you for undertaking it and sharing your results and code. Have you compared your readings with venous blood draws? I've read that the reason people got excited over Theranos was because they were handwavey promising venous-grade results from capillary fingerstick blood collection. There is a marked difference between the kind of blood collected between the two. I suspect we won't resolve that difference other than through calibration, until we will get to the point where we're directly sampling from implanted devices powered inductively.


The values from Libre are almost always different compared to the blood from fingertip. But using the great work from the Nightscout community one can calibrate the readings and they are very accurate.

The Libre chip stores 8 hours of measurements from every five minutes and even if the scale is wrong without the calibration the trend is right. It is absolutely useful to always see the trend and being able to react before anything bad happens. xDrip can, when correctly used, estimate how the sugar will react if I now take N units of insulin or eat M carbs.

Officially we will never get anything this nice, but if you're smart, just start building your own system. It takes time and depending where you live lots of money. But if I can understand my body better and I don't need to be afraid that I die at night, it is definitely worth it


> Already I'm using an NFC chip in my arm giving results to my phone and from there to InfluxDB and Grafana. Later with a proper CGM I also get automatic alarms which wake me and my partner if the sugar gets to low.

Very cool! I've recently become friends with a type 1 diabetic and have been learning a lot about it myself. It really is an incredibly intrusive thing that involves constant supervision even with automatic pumps, constantly switching spots to place the needle that much stay in him constantly. He's actually getting a service dog in a month that's trained to wake/warn him if his blood sugar levels get too low. Have you open sourced your solution?


https://github.com/jamorham/xDrip-plus

This is the fork I'm using and I made the support for InfluxDB. If you want the cheapest CGM solution, it might be the FreeStyle Libre with a rooted android watch wrapped next to it. By paying more there are better solutions but you still need to solder an extra device to carry if you want the readings with Bluetooth, at least in Europe.

Nightscout is an open source hacker community in Europe providing support and tools if interested.

http://www.nightscout.info/


Here's my notes how to use Grafana and InfluxDB to monitor blood glucose levels. https://github.com/NightscoutFoundation/xDrip/blob/master/Do...


Interested in hearing more about that - How does the NFC chip get results?


It is the FreeStyle Libre, which has a small needle and a radio. The provided reader is not the most accurate, but you can read the results with any NFC enabled device. For Android xDrip plus is my choice and I've already contributed new features.

A disclaimer: do not use any of these if you don't know exactly what you're doing. If you do acknowledge the risks and have some backup system for measurements, this system is making the life of a type 1 diabetic much easier...


IIRC, you're not even supposed to rely on the Freestyle Libre exclusively, you've still to take the traditional finger pricks reasonably frequently to be sure its calibration isn't wrong.


I know that. But with calibrations xDrip can adjust its values which is not possible with the official device. For me it is enough to test from fingers about twice per week.


4 years ago I got diagnosed with type 1 diabetes in my early forties. The hospital staff showed me how to manage my glucose with long acting and fast acting insuline.

As a programmer I'm good with numbers so everything was pretty much under control but I started noticing that I needed less and less insuline up to the point that I needed no insuline at all. This was about a year ago. At that same time I had some new physical health problems and it turned out I had celiac disease as well. Bummer :(

One side-effect of 'untreated' celiac is that carbohydrates are less well converted to glucose and so my glucose levels stayed normal without using insuline. Unfortunately it meant I was not cured from type 1 diabetes.

Now that I am on a gluten free diet my insuline usage is back to normal and I stopped farting as a bonus :)


If the celiacs meant the carbs were less well converted to glucose and that's why your levels stayed normal, why not just eat less carbs now?


You sure it was Type 1?

Generally people are diagnosed with Type 1 at a very young age, since it is caused by your own immune system destroying beta cells in the pancreas, which if untreated results in eventual death.

Type 2 is more often associated with age and diet. It is the most common type in particular at later ages, but some people get it younger due to genetic predisposition.


This is really not the kind of thing that people with a diagnosis tend to be confused about.

There is early and late-onset T1D. About 25% of T1D is diagnosed as an adult [1]

[1] - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2925303/


The UK Prime Minister, Theresa May, was diagnosed with type 1 diabetes in her mid 50s, just a few years ago.


Type 1.5 is adult onset autoimmune diabetes


That's a bit of an oversimplification. T1 is auto-immune -- the body loses the ability to produce insulin, and you can detect autoantibodies in the blood. T2 is insulin resistance, and generally has no autoimmune component and no autoantibodies present.

Typically T1D comes on all at once; the autoantibodies destroy the insulin producing beta cells and the patient needs exogenous insulin starting immediately. A subset of adult onset T1D displays a much slower progression of the destruction of beta cells. This is called LADA (latent autoimmune diabetes of adults”) or slow-progressing T1D and more recently T1.5D.

Similarly, some T2D patients also show evidence of autoantibodies however their beta cells are still largely functioning.

So now we further split into groups; Type 1–LADA, Type 1.5 or “double” diabetes, and Type 2 diabetes with autoantibodies.

This is a good overview: https://www.diabetesselfmanagement.com/diabetes-resources/de...


Thanks! I'm a little rough on my diabetes pathology/immunology, this was a good review :)


The folks at the hospital were not sure at first. I'm neither young, nor old and overweight so there were different opinions before some specific blood test was done.


That's a really interesting story and congratulations on beating a pretty nasty disease. That must feel like a true accomplishment.

It appears, based on this, that carbohydrates drove your diabetes? I wonder if the problem is with refined carbohydrates or with gluten specifically?

Do you eat sugar, chocolate, etc?


I think you misunderstand.... Certainly congrats to bluemax for successfully managing concurrent celiac and T1D but nothing has been "beaten" here.

T1D is an autoimmune disease which destroys the pancreas' ability to produce insulin. Your body needs insulin to process sugar in the blood into energy, a large part of that sugar comes from carbs.

Celiac is an autoimmune disease which is a reaction in the gut to gluten. Exposure to gluten causes inflammation in the gut and ultimately damages the lining of the intestine to the point where your body cannot absorb nutrients (including the carbs) from the food you eat.

What bluemax observed is the damage from celiac was restricting his carb absorption which reduces the amount of insulin required to keep blood sugar in range.

It takes ~6 months abstaining from gluten for the intestine to heal and for carb absorption to return to normal, over which time insulin requirements would also return to normal. Going gluten free allows the intestine to heal (and you have to stay gluten free -- the celiac doesn't go away).

My daughter is T1D+Celiac so I'm quite familiar with it as well.


Interesting. Thank you for taking the time to fill a large hole in my understanding :)

Sorry to hear about your daughter's health issues too. It must be very difficult to have that anxiety on top of the usual anxieties that come with parenthood. I have 2 young girls and I can only imagine what it would be like if either of them had a lifelong health problem, never mind 2.


Exactly that.


Quote: "Mr Darkes says that doctors are now 80 per cent convinced he is cured of the condition, which has never before been reversed."

I suspect (and it can't be more than a suspicion) that many of those with diabetes diagnoses never take the risk of reevaluating their physical condition, but passively continue their medication -- and that seems wise and prudent.

Maybe a carefully designed study, an animal study at first, could reveal that what happened to this individual is on the roster of possibilities, that some people have the ability to reactivate their pancreases in the right circumstances.

It's already well-established that physically active people have a lower risk for diabetes, but once the condition is diagnosed, most people start an insulin regimen that never ends. This case suggests that a person's pancreas can be reactivated -- but for how many? And is the change permanent? These are unanswered questions.


Given the ongoing cost and incredible amount of hassle involved in managing insulin for diabetics, I would think many would jump at the opportunity to discontinue medicating multiple times a day, and would go to pretty great lengths to do so.

But, the risk of "testing" insulin response yourself would be pretty high, too, so I would hope folks would do so under doctor supervision. Hopefully, this will make that kind of experimentation become more common. If there's something to it, a whole lot of people could see a tremendous improvement in their quality of life.


Sadly this article doesn't say if he can eat cakes or cookies without dangerously high blood sugars. This test could say quite definitively if he is cured or not.

Usually term "reversed" is used in context of Type 2 diabetes, meaning that patient can have normal range blood sugar without any medications, but patients still cannot eat cookies/cakes without blood sugar spiking to dangerous levels.


tldr: Unsatisfyingly short article about someone no longer having type 1 diabetes -- without any even possible explanation as to why. They only mention long-distance running as a remote possibility.


The most likely explanation is a misdiagnosis. The inevitability of statistical ocurrance does not make for an interesting story however.


The article is a bit short on medical details. It sounds like he was diagnosed Type 1 diabetes and then after time they think his pancreas regrew the beta cells needed in a functioning pancreas


Surprise me. I think that both diabetes types are very complex illness.


How do you measure the amount of insulin pancreas is secreting?


Probably indirectly, by consuming a measure of sugar and watching for a rise (or not) in blood glucose levels.



This seems... unlikely? Is it possible he had some other, rarer autoimmune condition that presented diabetes-like symptoms, and that resulted in a false diagnosis?




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