Living with diabetes for 30 years in Tokyo

[Robert Hancock]

Hi — I'm a new member from Tokyo, although not Japanese (UK by birth). I've lived here 40 years, 30 of which have been as a T2D but after 20 years on various medications, including metformin, GLP-1s and semaglutide, I made a lifestyle change and am now completely medication-free with a HbA1c of under 6, mainly as a result of using a CGM to monitor glucose levels. If this community is interested in my experiences as a well-controlled diabetic living in Japan, I'll post more information.

 

[Melgar]

Hello and welcome to the forum @Robert Hancock. Congratulations, all your hard work paid off.

 

[Pipp]

Hi — I'm a new member from Tokyo, although not Japanese (UK by birth). I've lived here 40 years, 30 of which have been as a T2D but after 20 years on various medications, including metformin, GLP-1s and semaglutide, I made a lifestyle change and am now completely medication-free with a HbA1c of under 6, mainly as a result of using a CGM to monitor glucose levels. If this community is interested in my experiences as a well-controlled diabetic living in Japan, I'll post more information.

Welcome, well done, @Robert Hancock , and yes, I am curious to know how you did that.

 

[AloeSvea]

Hi @Robert Hancock. Information always welcomed!

What's diabetes care like in Japan?

 

[Robert Hancock]

Welcome, well done, @Robert Hancock , and yes, I am curious to know how you did that.

Hello Pip,
Diabetes care in Japan is reasonably good and I get a monthly clinic visit on the Japanese NHS (pays 80% of costs) where they take a blood sample to test my HbA1c and meet with the doctor who usually gives me a rundown on my monthly bloodwork. Of course, being doctors, they are very pharmaceutical oriented but the doctor I see trained in the US and is more open to questions from me, partly because I have training in the biological sciences and I'm always asking him questions about the biochemistry. I developed diabetes at the age of 44 but was watching for it because both my grandmother and mother were diabetics, so I have a strong genetic tendency for diabetes. In the early days, it wasn't too bad and I was able to control it reasonably well by eating carefully plus fairly low doses of Metformin and little exercise, but it worsened as I got older and the last time I really "fell off the wagon" was 4 years ago when I was under a lot of work stress and my A1c shot up to 10. They put me on semaglutide self-injections, which made me feel awful plus caused a lot of bruising to the abdomen, so I stopped and thought about finding another way. I didn't really modify my diet very much other than cut out most flour and sugar-containing products (processed foods) but I did start walking gently every day for at least 7000 steps or about 5 km and it became very clear from the monthly A1c that my diabetes was drastically improving and dropped to the high 6 region, which I had never been able to achieve using Metformin and GLP-1 medications. At that point, I "bit the bullet" cost-wise and started wearing a CGM so I could monitor (as a scientist, I am very data oriented) which foods were pushing up my BG levels moment-to-moment and when I did see a rise I went for an extra walk of 30 minutes or so to push it back down. That strategy has seemed to work and now I am regularly hitting 5.8 to 5.9 at monthly A1c tests while using no medication. I'd say that it is the CGM giving me knowledge about what foods rapidly increase my BG that has helped solve the problem. Unfortunately, I can't get a CGM on the Japanese NHS unless I'm an insuling-injecting diabetic so using a CGM is quite expensive but I figure that once I've trialed every food I generally eat, I'll know what to avoid and if I can't avoid it, I'll know what to do in terms of walking to lessen the impact and then won't need a CGM all the time. As a recent example, I'd always believed the marketing BS that sugarfree muesli is a healthy breakfast for diabetics due to the higher fibre and low GI, but it is NOT in my case and causes a very steep large BG rise requiring 1.5 hours of walking after eating to return to normal levels, so no more muesli breakfasts for me! In summary, I suppose CGM gives me the knowledge I need to understand what foods I shouldn't eat and if I do, what I must do to quickly reduce the impact.

 

[Robert Hancock]

Hello Pip,
Diabetes care in Japan is reasonably good and I get a monthly clinic visit on the Japanese NHS (pays 80% of costs) where they take a blood sample to test my HbA1c and meet with the doctor who usually gives me a rundown on my monthly bloodwork. Of course, being doctors, they are very pharmaceutical oriented but the doctor I see trained in the US and is more open to questions from me, partly because I have training in the biological sciences and I'm always asking him questions about the biochemistry. I developed diabetes at the age of 44 but was watching for it because both my grandmother and mother were diabetics, so I have a strong genetic tendency for diabetes. In the early days, it wasn't too bad and I was able to control it reasonably well by eating carefully plus fairly low doses of Metformin and little exercise, but it worsened as I got older and the last time I really "fell off the wagon" was 4 years ago when I was under a lot of work stress and my A1c shot up to 10. They put me on semaglutide self-injections, which made me feel awful plus caused a lot of bruising to the abdomen, so I stopped and thought about finding another way. I didn't really modify my diet very much other than cut out most flour and sugar-containing products (processed foods) but I did start walking gently every day for at least 7000 steps or about 5 km and it became very clear from the monthly A1c that my diabetes was drastically improving and dropped to the high 6 region, which I had never been able to achieve using Metformin and GLP-1 medications. At that point, I "bit the bullet" cost-wise and started wearing a CGM so I could monitor (as a scientist, I am very data oriented) which foods were pushing up my BG levels moment-to-moment and when I did see a rise I went for an extra walk of 30 minutes or so to push it back down. That strategy has seemed to work and now I am regularly hitting 5.8 to 5.9 at monthly A1c tests while using no medication. I'd say that it is the CGM giving me knowledge about what foods rapidly increase my BG that has helped solve the problem. Unfortunately, I can't get a CGM on the Japanese NHS unless I'm an insuling-injecting diabetic so using a CGM is quite expensive but I figure that once I've trialed every food I generally eat, I'll know what to avoid and if I can't avoid it, I'll know what to do in terms of walking to lessen the impact and then won't need a CGM all the time. As a recent example, I'd always believed the marketing BS that sugarfree muesli is a healthy breakfast for diabetics due to the higher fibre and low GI, but it is NOT in my case and causes a very steep large BG rise requiring 1.5 hours of walking after eating to return to normal levels, so no more muesli breakfasts for me! In summary, I suppose CGM gives me the knowledge I need to understand what foods I shouldn't eat and if I do, what I must do to quickly reduce the impact.

As another example, a diabetic friend in the UK was told at his diabetic clinic that beans on toast was OK because beans are high fibre. Well, in my CGM trials, brand name beans on toast is second only to Granola for a steep and high (257 mg/dl in 30 minutes from base level of 127 mg/dl) BG spike—so much for the clinic being the experts!

 

[Ladynijo]

Thanks for posting this, your diabetic journey gives me ideas! I also self fund a CGM intermittently, to check what’s going on with various foods. Totally agree re standard diet advice, it’s mostly nonsense for diabetics. Following diagnosis, I spent about 9 months focusing on what works for me - high protein, low carb, & not worrying about fat - weight dropped by 2.5 stone, HbA1c also dropped. On maintenance now, generally walking works well for me too in reducing levels, also swim but that spikes my glucose for an hour or so afterwards.

I’m still on Metformin SR but hoped to come off when I got my diet & levels right. Did you phase it out gradually or just cut completely? And how do you deal with the amount of rice & sweeter based sauces in local Asian food?

 

[Robert Hancock]

Thanks for posting this, your diabetic journey gives me ideas! I also self fund a CGM intermittently, to check what’s going on with various foods. Totally agree re standard diet advice, it’s mostly nonsense for diabetics. Following diagnosis, I spent about 9 months focusing on what works for me - high protein, low carb, & not worrying about fat - weight dropped by 2.5 stone, HbA1c also dropped. On maintenance now, generally walking works well for me too in reducing levels, also swim but that spikes my glucose for an hour or so afterwards.

I’m still on Metformin SR but hoped to come off when I got my diet & levels right. Did you phase it out gradually or just cut completely? And how do you deal with the amount of rice & sweeter based sauces in local Asian food?

Hello Ladynijo, I haven't found nutrition-clinic advice to be much good for my T2D b/c they just repeat the same old tropes about high-fiber/low-GI meals which don't work for me at all as demonstrated by CGM measurements after many high-fibre meals. What really works for me is:
1. Keeping away from sugar in processed foods, flour both wholewheat and white in all foods, and all fruits. In Japan I don't eat rice but will occasionally substitute pearl barley in small amounts because it contains beta-glucan that is supposed to be good. I'm not a sweet sauce fan so that's not a problem.
2. Walking 7000 steps a day and also taking a short walk if the CGM shows rapidly rising glucose after a meal that is having unexpected consequences (or if I want a French baguette for mental health reasons after a successful monthly clinic visit!).
It is odd that walking works for you but swimming causes a spike b/c both are simply exercise but if you are swimming long distances (>1 km) it is possible that the spike is hepatic release of stored glycogen to glucose b/c you exhausted the glucose in your blood.
On this forum, I'd like to read more about the dawn phenomenon that about 50% of T2Ds suffer from, but I haven't searched the entire forum yet. It's something one will only realize having if using a CGM. Morning fasting fingerpricks won't show it but if you are a morning person and diabetic it is very likely you have it. The evolutionary genetics of diurnal and circadian rhythms and diabetes are fascinating but probably not something for this forum. Personally, I look forward to Apple releasing an Apple Watch with non-invasive BG monitoring because it will revolutionize diabetes care. I'll be first in line they day they release it.

 

[M80]

Hi!
Interested in what you say about your journey- I also find walking is a must for me to stay healthy and happy. It is so frustrating there is not more emphasis on different food/ stress/ lifestyle in diabetes care, and the way resources are allocated not always making sense.
I wish all had access to to the libre, t 2 and t 1, if they are motivated to use the knowledge to help themselves like you have. I am a type 1 diabetic and now get them but at the start I paid for it, as I recognised the value of it very early - having treated my diabetes since I was age 9 drawing blood from fingers.
Insulin is not on your plan ofcourse so we are different, but I want to give you credit for what you do , it’s amazing that we now have enough tools and knowledge to stop medication for type 2’s who do what you have done.

 

[ftt1960]

Hi Robert

Have you ever been tested for MODY? With your mum and grandmother both being diabetic there is clearly a strong familial link.