What a ride

[melbnrnr]

Just diagnosed as t2 and waiting on t1 results.
After 2 years of mis-diagnosis including all types of cancer, heart attacks , rare infections , kidney stones, all that was false and a roller coaster.
Im actually comfortable with being on the right path now. But lacking so much info.

I have had a monitor for a month and lots of numbers but dont know whats good or bad!

Ive tried looking local (melbourne) for groups but everything has shifted online.

I joined as this seemed like a good forum and a good start to understanding.

I big hello to everyone

 

[JoKalsbeek]

Just diagnosed as t2 and waiting on t1 results.
After 2 years of mis-diagnosis including all types of cancer, heart attacks , rare infections , kidney stones, all that was false and a roller coaster.
Im actually comfortable with being on the right path now. But lacking so much info.

I have had a monitor for a month and lots of numbers but dont know whats good or bad!

Ive tried looking local (melbourne) for groups but everything has shifted online.

I joined as this seemed like a good forum and a good start to understanding.

I big hello to everyone

Hi Ross,

That's quite the load of (mis-) diagnoses! How on earth did they manage to misdiagnose kidney stones?! They do tend to make themselves glaringly obvious after a bit. (In scans I mean, not per se because of the screaming one tends to do when one passes.) The rest, well, yeah... They can bark up the wrong tree sometimes on all those counts. Alas. So... Originally diagnosed type 2, and now they're looking into possible T1 instead? Of their own volition, because something popped up that seemed off, or because you've been asking for it? In any case, better to have them looking well, rather than not at all. I hope you get your answers soon.

So, numbers... I don't know what kind of readings you're getting, but if you're measuring in mmol/l, this website's https://www.diabetes.co.uk/controlling-type2-diabetes.html numbers are the ones to go by.
"Target blood glucose levels for people with type 2 diabetes are:

• 4 to 7 mmol/l before meals and when fasting
• 4 to 8.5 mmol/l 2 hours following meals"

If you're over, it's too much, basically. And I'm assuming you're over? If type 2, https://josekalsbeek.blogspot.com/2019/11/the-nutritional-thingy.html could very well help, but if you're a T1 instead, that link is entirely useless. So better to wait and see what your results are, as we won't be able to tell type going by blood glucose numbers. A T2 makes loads of insulin but has become insensitive to it. Ergo, high blood sugars. A T1 has an autoimmune condition where the body attacks the pancreas, and kills off, sometimes even over relatively long periods of time, insulin production. So one has loads, the other has little to none, meaning you really, really need to know which type you have before starting treatment with, for instance, a rather rigorous lifestyle change. Just a little caveat there.

We can't diagnose on here, but if you throw out any and all information you have thusfar, maybe we can help with something or other.

Hope you get results right quick!
Jo

 

[melbnrnr]

Hi Jo. Thank you and im still in discovery phase of an exact diagnosis. I think in medical phrases they were hunting zebras when a horse is right in front of them.

The kidney stones was with prostate cancer wild goose chase. Took 2 months to eliminate. Even ended up in ER with an infection which makes sense now was caused by blood sugar at insane levels.
The signs were in 3 blood tests over that time but they tried to treat symptoms and not the cause. Im sure others have had similar stories.

Thats the past and im very much looking at now and future.

The T1 concern us because my c peptide test result wasnt good. Im waiting for the nurse to explain in a weeks time.

Im currently registering 6 and 12 at the 2 hour interval and 11 in the morning. Doc said that was great compared to the day i was diagnosed which was somewhere in the 20s and dangerous.

There's also the body changes over the last month im adapting to. Prior to diagnosis i lost 20 kg 6 months for no reason whilst sleeping 16 hours a day.

Im taking all the info and recovering from a bad situation.

 

[JoKalsbeek]

Hi Jo. Thank you and im still in discovery phase of an exact diagnosis. I think in medical phrases they were hunting zebras when a horse is right in front of them.

The kidney stones was with prostate cancer wild goose chase. Took 2 months to eliminate. Even ended up in ER with an infection which makes sense now was caused by blood sugar at insane levels.
The signs were in 3 blood tests over that time but they tried to treat symptoms and not the cause. Im sure others have had similar stories.

Thats the past and im very much looking at now and future.

The T1 concern us because my c peptide test result wasnt good. Im waiting for the nurse to explain in a weeks time.

Im currently registering 6 and 12 at the 2 hour interval and 11 in the morning. Doc said that was great compared to the day i was diagnosed which was somewhere in the 20s and dangerous.

There's also the body changes over the last month im adapting to. Prior to diagnosis i lost 20 kg 6 months for no reason whilst sleeping 16 hours a day.

Im taking all the info and recovering from a bad situation.

The weight loss and the C-peptide results do sound like T1 is likely, in which case I'm far from useful, but I do believe the very high numbers you saw previously might've had something to do with the infection. You get them easily when blood sugars are high, and they feed on blood glucose, so... Bit of a vicious circle. The numbers you're seeing now aren't ideal, but not dangerous, especially since you're just getting started with this. If that changes though, and you feel sick or weak, call for help. Really. No ifs and buts.

Something tells me that with all you've been through, you've become your own best advocate. Keep asking questions if you have them. I may not be of help if my hunch and from the sound of it, yours, is right, but others here are certain to be.

I'll keep my fingers crossed for you.
Jo

 

[melbnrnr]

At the moment im trying to learn terminology. Its a new foreign language. The forum is helping just understanding medical speak and learning what questions to even ask the doc.

I am feeling better and docs already double dosing me to get the numbers better. Just thinking its a journey and the numbers are a goal.

After going from 95kg to 120 and back to 100 really messed me up.
I have only told 2 people my diagnosis because its still not clear.

Difficult when friends congratulate me on losing weight and looking normal again, wanting to know the 'secret' . Clearly not a recommended pathway. I just say exercise more .

So hesitant to tell people and how to deal with reactions.
.
I will just keep learning from informed sources

 

[EllieM]

Hi @melbnrnr and welcome to the forums.

Hopefully you get your results soon. Can I ask what diabetes medication you are on at the moment?

 

[melbnrnr]

im now on metformin 1000

 

[melbnrnr]

i probably have lots of dumb questions that dont seem to be in info packs.

heres a first one.

for the 2 hour monitoring test , how important is it to be 2 hours apart?

for instance, does it skew results if it is 3 or 4 hours apart?

an example is to test before going out to dinner and then retest when back home a few hours later.

 

[ianf0ster]

I can only speak for T2D testing, not testing before and after insulin and meals for T1's.

For a T2 when testing foods, it does matter that it is around 2hrs after first bite, because it's at that 2hr mark that a non-diabetic will have a similar BG reading to that they had just before the meal.
If you test too long before this then you may be measuring higher and so may reject a food that your body is OK dealing with. If you test too much later ten your insulin response has longer to bring down the BG level so a food may look OK for you (in that quantity) even when it caused too big a BG rise at the 2hr mark.

The idea is to adjust our diet so that our BG and rises in BG due to food mimic those of a non-diabetic!
If you are actually T2 rather than T1, you should read Jo's famous Blog post. This is what put me on the right path for my journey to T2D remission (been in remission for well over 3yrs now).

The Nutritional Thingy

There’s a few things you should know. 1. Practically all carbs turn to glucose once ingested , so not just straight sugars, but starches...

josekalsbeek.blogspot.com

 

[jjraak]

i probably have lots of dumb questions that dont seem to be in info packs.

heres a first one.

for the 2 hour monitoring test , how important is it to be 2 hours apart?

for instance, does it skew results if it is 3 or 4 hours apart?

an example is to test before going out to dinner and then retest when back home a few hours later.

Hi @melbnrnr

You've certainly been through the wringer, mate.

But Jo make some very good points.

As for stupid questions..... that's the one you never asked.

Trust me, I asked loads after my diagnosis (DX)...
And every time someone answered in a way I could understand...(not the same on all forums, sadly )

They're a great bunch on here, most questions get a reasonable answer within hours, if not sooner.

The two hour marker for testing is first bite to 2 hours as @ianf0ster rightly says .

Most also do an early morning one on rising, our so called fasting blood glucose FBG..( a nice 8 hour fast or more for most )

I used that number to monitor daily and found it most helpful.
Over the months I saw it move steadily downwards a point (almost), each month.

That showed me I was on the right path & doing this lchf lark, semi ok .

For all the testing, I would try to get into a routine, the early morning one can cause questions regarding timing, in bed ? Foot on floor, at the sink?

I doubt it really matters, as long as you're consistent

That way you're always measuring like for like each day.

lots to learn, but plenty on here able & willing to teach us.

good luck on the journey, whichever type they decide you are.

 

[melbnrnr]

Thanks for the replies. I will adjust my testing nights so i can hit the 2 hours without issues.
Difficult to give up live music night

 

[JoKalsbeek]

Thanks for the replies. I will adjust my testing nights so i can hit the 2 hours without issues.
Difficult to give up live music night

You do know testing kits can travel, right? No need to miss out on anything. And hey, if you test the rest of the time, missing out on ONE test a week isn't going to kill you. Have the same meal some other time, and see what happens. Careful with the drinks though, best stick with something other than beer, as it'll spike you. Sugar free coke with bacardi's fine, for instance.

As you're only on metformin for the moment, well... I would've expected worse numbers in the case of T1, really. It just increases insulin sensitivity a little, and keeps your liver from dumping excessive amounts of glucose in the morning. It doesn't do much of anything about what you eat. Very curious indeed, to find out your type. Just keep in mind, people get bigger because they are becoming diabetic, not the other way around. I was 102+, when I stopped weighing myself. I know I got bigger than that, but couldn't face the scales anymore. Until my pants dropped, seemingly out of nowhere. I got tested for T1 because I suddenly lost a lot of weight and was 95 kilo's without trying. (My first thought was cancer, and then the docs collectively thought cancer due to my liver being wonky, and, and, and...). But yeah, "simply" T2, which is a good thing, because I am kind of blind when it comes to numbers, and if I had to calculate insulin units, I'd be in serious trouble. So it all could still go whatever possible way for you, too.

Either way, people here have got you. You'll be okay.
Jo

PS: If someone starts up with the blame game, feel free to educate them on diabetes... You're getting a steep learning curve yourself right now, but just know.... Both T1 and T2 are genetic. T1's have an auto immune condition, T2's an insensitivity. Neither one is to blame for the condition they have. There are more types, many more even, but those two are the most prevalent ones, and both are gene-related. I got laughed at every Christmas for having changed my diet, but my aunt, who was embarrassed to say she is diabetic, and who laughed as much, now has complications. I'd never even heard of diabetic neuropathy in one's nose before... But there it is. She knew what worked for me, and why it worked, but she wouldn't make changes. So many diabetics, so many ways of dealing with it. And a lot more of us out there than you'd think, because people keep quiet about it. Maybe, if you find out your type, get comfortable with it, and tell people about it, the fellow diabetics'll come out of the woodwork, and you can tell them what worked for you. We're all in this together. You can lead a horse to water, and while you can't make it drink, you can make it know it's not alone. That helps, too. Sorry, that's a big PS!

 

[melbnrnr]

I am not sure if having sharp things and mosh pits can coexist?

Im getting consistent numbers and have something for my next med visits. I havent had beer in over 10 years, and might have one wine with a meal, rarely like christmas. Alcohol is not something i drink.
The T1 part is that they maybe are concerned that i could be on a path of developing rather than a clear diagnosis. Its an assumption until i meet up again , and i will just be on a regular monitoring yearly check. Until everything settles down , its still a T2 strategy.

I never really thought about how this happened. My family which is quite large and live into their 80s, has no history of diabetes.
Pre Melbourne lockdowns, all my tests were very boring normal. This has come out of nowhere.

I think i am private around my group because they love talking medical things , I go out to escape problems and have fun. I try not to dwell.

 

[JoKalsbeek]

I am not sure if having sharp things and mosh pits can coexist?

Im getting consistent numbers and have something for my next med visits. I havent had beer in over 10 years, and might have one wine with a meal, rarely like christmas. Alcohol is not something i drink.
The T1 part is that they maybe are concerned that i could be on a path of developing rather than a clear diagnosis. Its an assumption until i meet up again , and i will just be on a regular monitoring yearly check. Until everything settles down , its still a T2 strategy.

I never really thought about how this happened. My family which is quite large and live into their 80s, has no history of diabetes.
Pre Melbourne lockdowns, all my tests were very boring normal. This has come out of nowhere.

I think i am private around my group because they love talking medical things , I go out to escape problems and have fun. I try not to dwell.

You can mosh away as long as the safety's on, haha! Just move to the wall for a bit when getting stabby.

No need to dwell on diabetes mind you... I suck at social situations so my openness about it is probably not socially acceptable anyway. I wouldn't know, honestly... But you do whatever you feel is good for you. And if hitting mosh pits is it, without discussions about how many mmol/l's you were, more power to you. (Especially since relaxing is very, very good for blood sugars!)

Mosh on!
Jo

 

[volvo dave]

Just diagnosed as t2 and waiting on t1 results.
After 2 years of mis-diagnosis including all types of cancer, heart attacks , rare infections , kidney stones, all that was false and a roller coaster.
Im actually comfortable with being on the right path now. But lacking so much info.

I have had a monitor for a month and lots of numbers but dont know whats good or bad!

Ive tried looking local (melbourne) for groups but everything has shifted online.

I joined as this seemed like a good forum and a good start to understanding.

I big hello to everyone

Bit odd that NHS went through all those possibles.. I gave a routine sample when asked if I had any problems.. I said i get quite thirsty and go to the loo a little too much at night. hey presto.. got diabetes and had no idea except when I had a drink I would go a really healthy red.. so I asked the doctor what the best course of action to GET RID of diabetes.. cos I was getting annoyed with the 'living with diabetes advice'.. he said alcohol consumption doesnt help.. So I walked out of the surgery and havent had any alcohol since.. that was 8 years ago.. I am heavy but dont look obese.. but weight loss of over 2 stone just before lockdown got my levels into the 30's with metformin.. my intention was to keep the weight loss going and then ditch the metformin.. that is still an ongoing battle..I need to get back into the routine I had before lockdown.. which was gym/swimming 3 times a week.

 

[ianf0ster]

Bit odd that NHS went through all those possibles...................

The OP is in Australia (Melbourne at a guess), so not UK NHS.

 

[melbnrnr]

Yes Dave we have Medicare which is a copy of NHS anyway.

Lockdowns are such a contributor to lifestyle. Melbourne's long lockdowns (over 250 days within a 500 day period) and restrictions meant annual check ups and consultations really became difficult. A lot of good doctors retired or moved interstate so they could practice as many were not allowed to. University became distant learning and new doctors are under trained.. The system broke and is still recovering.

For those symptoms they chased kidney cancer, kidney stones, prostate cancer, prostate enlargement, liver cancer, STIs, MRSA, Staph. Lots of testing and all negative. Even stress / depression was considered, but that was only true due to the fact they couldnt diagnose me! Stress has reduced now. BP has dropped from 180/120 to 130/90 since just being diagnosed.

The blood test all along was showing high glucose and flagging diabetes but it was ignored and i didnt have access. I probably saw 5 different GPs until my current one didnt even blink and just said T2 and here is some tablets to try. Instantly my body has improved.

I really miss going to the gym. So many have shut due to losing members.

Its definitely time to move back into normal good routines that we had before. It con only help