Still a bit of a mystery

[Chris12345]

Hi everyone, been a while since I posted so thought I'd provide an update as still a little confused, and frustrated to be honest.

Was diagnosed in August '19 age 39 with a1c of 75. Healthy weight and frequent exercise (running) at the time. GP and DN said almost certain T1.5, so put on gliclazide for a month.

Tests for 1.5 came back negative, but they are testing again in 6 months. Off glic (thank goodness), although it did get my levels down very effectively. Put on SR metformin, which I am now on 1000mg twice a day of (gradually increased).

I test frequently, and I'm usually in range but get the odd spikes to 13 ish if I touch the wrong carbs or sometimes for no apparent reason. I eat no sweet food, I only eat brown carb if any, and I follow the right diet. No sliced bread in ages.

I find some food makes me feel a little queasy (like eggs which I used to enjoy, so there goes lots of the omelette recipes), and sometimes just feel queasy anyway. Still exercising, but have added more protein and started weights. Even so I've dropped 6kg since Aug and any more is too much. My mood is also a little up and down. Im not a heavy drinker, just the occasional glass of wine or two.

GP ordered a CT scan last week to check no underlying issues, which thankfully came back clear.

All in all just a little fed up with it as just as I have a few days in the green I start spiking again. GP and nurse say I'm a bit of a mystery. They also said at least its been caught early (by mistake), but my eye test came back positive for background retinopathy so dont know how long I've had it. Never any symptoms before other than being tired and grumpy (which I put down to a job and 3 young kids).

Tempted to ask to try a different drug, but not sure what. Def not glic again. Plus if it is 1.5 I've read metformin can have bad side effects e.g. metabolism.

The only other issues I've experienced are some anxiety / increased sensitivity to stress (not had before); and whilst I get to sleep ok it's now restless and I wake up early and cant settle again so tired a lot of the time.

Not sure what I'm asking for here, just felt like sharing! Any thoughts welcome

 

[bulkbiker]

I only eat brown carb if any

Could be your problem right there...
Brown white or orange your body treats carbs much the same way. Little bits of glucose once they are ingested...

 

[EllieM]

Tests for 1.5 came back negative, but they are testing again in 6 months. Off glic (thank goodness), although it did get my levels down very effectively. Put on SR metformin, which I am now on 1000mg twice a day of (gradually increased).

So have they done a c-peptide test? ie how much insulin are you producing? If the 1.5 tests are just antibodies, then they don't always come up positive for T1/LADA.

Then there's always MODY, but I've no clue about that other than it's genetic and a bit weird....

 

[JoKalsbeek]

Hi everyone, been a while since I posted so thought I'd provide an update as still a little confused, and frustrated to be honest.

Was diagnosed in August '19 age 39 with a1c of 75. Healthy weight and frequent exercise (running) at the time. GP and DN said almost certain T1.5, so put on gliclazide for a month.

Tests for 1.5 came back negative, but they are testing again in 6 months. Off glic (thank goodness), although it did get my levels down very effectively. Put on SR metformin, which I am now on 1000mg twice a day of (gradually increased).

I test frequently, and I'm usually in range but get the odd spikes to 13 ish if I touch the wrong carbs or sometimes for no apparent reason. I eat no sweet food, I only eat brown carb if any, and I follow the right diet. No sliced bread in ages.

I find some food makes me feel a little queasy (like eggs which I used to enjoy, so there goes lots of the omelette recipes), and sometimes just feel queasy anyway. Still exercising, but have added more protein and started weights. Even so I've dropped 6kg since Aug and any more is too much. My mood is also a little up and down. Im not a heavy drinker, just the occasional glass of wine or two.

GP ordered a CT scan last week to check no underlying issues, which thankfully came back clear.

All in all just a little fed up with it as just as I have a few days in the green I start spiking again. GP and nurse say I'm a bit of a mystery. They also said at least its been caught early (by mistake), but my eye test came back positive for background retinopathy so dont know how long I've had it. Never any symptoms before other than being tired and grumpy (which I put down to a job and 3 young kids).

Tempted to ask to try a different drug, but not sure what. Def not glic again. Plus if it is 1.5 I've read metformin can have bad side effects e.g. metabolism.

The only other issues I've experienced are some anxiety / increased sensitivity to stress (not had before); and whilst I get to sleep ok it's now restless and I wake up early and cant settle again so tired a lot of the time.

Not sure what I'm asking for here, just felt like sharing! Any thoughts welcome

White carbs, brown carbs... They're carbs. They'll hit you no matter which way you turn it, more often than not. You might want to steer clear entirely? And your feeling nausiated by eggs and such, that's most likely the metformin's gastro-intestinal side effects. I know how badly that went for me, anyway. Personally, considering your issues, including the background retinopathy, I'd hit the low carb/high fat diet (or even keto!) extra hard and reverse the lot of it. (And without metformin, eggs would be very much on the dining table again.). https://www.diabetes.co.uk/forum/blog-entry/the-nutritional-thingy.2330/ <-check that (again?) and see what changes you can still make, maybe? If you're early you could still fix the retinopathy through low carb. No promises though, dunno how bad it is. As for anxiety and stress, if your bloodsugars are up, those get worse too. (As would depression and such as well; our moods are quite related to our bloodsugars). On top of that, you were only diagnosed with a life changing condition a couple of months ago. You're grieving, that was a traumatic event, and you have to adjust your entire life. Give yourself some time! It'll get better!

Good luck with it all!!!
Jo

 

[HSSS]

I test frequently, and I'm usually in range but get the odd spikes to 13 ish if I touch the wrong carbs or sometimes for no apparent reason. I eat no sweet food, I only eat brown carb if any, and I follow the right diet. No sliced bread in ages.

This paragraph set off some alarms

When do you test in relation to meals?
What is “in range”?
How often are the spikes to 13? To what foods? That’s a fair way above ideal
As has been said any carbs, no matter the colour, are carbs. The speed they break down is the only variable for bgl.
And if not sliced bread then what instead? Grains are kryptonite to the majority of us

Even so I've dropped 6kg since Aug and any more is too much

Have you increased fats to make up for the energy you are no longer getting from carbs? this is typically how we stall weight loss when we have achieved the desired weight. (Though many of us find our bodies settle at a particular point all themselves not too far from the goal we had in mind if it was realistic in the first place)

 

[HSSS]

Out of interest did they say why they believed it was type 1.5?

Not all type 2 are fat and lazy as perceived by the media and some medical professionals!

Though in their favour at least they considerate and tested for this, many don’t. Do you know which tests? GAD? autoimmune antibodies? C-peptide?

 

[Rose22]

Hi everyone, been a while since I posted so thought I'd provide an update as still a little confused, and frustrated to be honest.

Was diagnosed in August '19 age 39 with a1c of 75. Healthy weight and frequent exercise (running) at the time. GP and DN said almost certain T1.5, so put on gliclazide for a month.

Tests for 1.5 came back negative, but they are testing again in 6 months. Off glic (thank goodness), although it did get my levels down very effectively. Put on SR metformin, which I am now on 1000mg twice a day of (gradually increased).

I test frequently, and I'm usually in range but get the odd spikes to 13 ish if I touch the wrong carbs or sometimes for no apparent reason. I eat no sweet food, I only eat brown carb if any, and I follow the right diet. No sliced bread in ages.

I find some food makes me feel a little queasy (like eggs which I used to enjoy, so there goes lots of the omelette recipes), and sometimes just feel queasy anyway. Still exercising, but have added more protein and started weights. Even so I've dropped 6kg since Aug and any more is too much. My mood is also a little up and down. Im not a heavy drinker, just the occasional glass of wine or two.

GP ordered a CT scan last week to check no underlying issues, which thankfully came back clear.

All in all just a little fed up with it as just as I have a few days in the green I start spiking again. GP and nurse say I'm a bit of a mystery. They also said at least its been caught early (by mistake), but my eye test came back positive for background retinopathy so dont know how long I've had it. Never any symptoms before other than being tired and grumpy (which I put down to a job and 3 young kids).

Tempted to ask to try a different drug, but not sure what. Def not glic again. Plus if it is 1.5 I've read metformin can have bad side effects e.g. metabolism.

The only other issues I've experienced are some anxiety / increased sensitivity to stress (not had before); and whilst I get to sleep ok it's now restless and I wake up early and cant settle again so tired a lot of the time.

Not sure what I'm asking for here, just felt like sharing! Any thoughts welcome

Have you had a recent hba1c? If that’s still high despite the meds and altered diet, and if you are still loosing weight then the tests of cpeptide, GAD and then on those perhaps for MODY which is a rare genetic form. Sounds like they need rule out LADA or MODY.
Like you I was on gliclazide, was very sensitive to it ( which some forms of MODY are, very sensitive to sulphynereas, sorry spelt wrong but class med Gliclazide is, as in makes pancreas produce more insulin. ) so apart from feeling ill and hypo I had itching skin! Apparently a type 2 would need x4 more Gliclazide than a MODY person. Now starting today Repaglinide each meal, and waiting for my test results to come in. Without tests it’s guess work....and they’ve been guessing about how best to treat me for 1.5 years! Finally saw consultant and specialist diabetes nurse and the care is far better. If you are tolerating metformin then you should hopefully see levels come down?
With regards to the back ground retinopathy, I also was shocked when I was told I had it. But after a year on meds and increased lifestyle changes my latest test showed no background retinopathy! So it can change! Don’t let it get you down! I take that as a real positive, and although my sugars are harder to control at least that is one good significant improvement.
I have found my drs guessed for too long...so if you are unhappy with things ask to be referred to a consultant or specialist diabetes nurse.

 

[Chris12345]

Thanks everyone, really appreciate your replies. I'll try and reply a little at a time as lots to remember!

I try and avoid carbs as much as possible. I test before and two hours after first mouthful, and am usually under 8 afterwards. When I do eat carbs they are complex ones, and I've found things like oats with some full fat yogurt and berries are fine. It's the unpredictability though, I can have a meal one day and be fine, eat a half size portion of the same thing the best day and not be.

 

[Chris12345]

I think they did GAD and C Peptitde tests but they want to repeat

 

[Chris12345]

Carbs are krypinite is right! I can go a few days of being fine and then get the spikes. Due another HC1 this month which will be lower for sure, but I want to level the highs. The other variable is if I've not done exercise (if I've done a 5 / 10k run I'm fine for a day or two.

But yes, what I eat. I stupidly ate a burger in a plain bun today (first in a long time) and two hours later I was 15.8.

 

[Chris12345]

I'm eating a lot more healthy fats to make up for less carbs, and protein.

Not sure why they thought 1.5 other than saying 'I've never presented or responded like a t2'

 

[Chris12345]

That's really encouraging the retinopathy can change. I actually read it can be caused by dropping too quickly, and on gliclazide I was always between 4.5 and 8 ish straight away. Also like you said I didn't need much, I was on the minimum dose.

 

[Chris12345]

I hope you all have a great weekend by the way

 

[HSSS]

Hi Chris. So rereading the thread I’m not sure quite what you’re looking for or having issues with particularly.

You sound much like most of us type 2, but perhaps the fit TOFI type. That’s not to say type 1.5 (or even mody) is definitely off the table, just that it doesn’t sound so different to other type2 to me either.

So am I right in thinking you’ve only had the hb1ac of 75 in August? And since then you had the first month on glic and since then metformin and dietary change? If that’s the case at the next test you could be pleasantly surprised at the changes made.

Many of us don’t even eat the complex carbs as they still can have an undesirable effect. Have you checked things like the oats (and any other carbs) at any point other than 2 hrs? Sometimes the amount of fat eaten with it or the complexity of the carb can mean the rise is prolonged or delayed past that point. I’d be sure before continuing to eat them.

Other than that all I can suggest is not to eat the things like burger buns that cause the spikes you want to eliminate.

 

[Resurgam]

A lot of people get the 'Low GI oh that's just fine' shpeil - for me 'healthy' carbs are not at all healthy.

 

[Chris12345]

Thanks again for replies. I wasnt sure what I was after by messaging at first either, other than sharing a little confusion and frustration as this is the only place I can come to really.

Its actually very reassuring to hear that you dont think I sound much different to the other T2's on here (I've never really had much of a benchmark), and I think the clear message is for me to step back and have another look at my diet again. Had never considered the slower burn of the complex carbs.

Yesterdays burger was a bad example as it was the first time I'd touched this kind of bread in three months, but then the result was the highest so I wont be doing that again! We live and learn.

The weird part is when am on same HFLC diet one day fine, and not the next. Problems are usually after lunch. The only other factors I can think of are that exercise has a lasting positive effect during the good days (I.e. I've had a 5-10k run in the morning / hour of weights in gym in last 24 hours), and I am quite sensitive to stress on my bad days (either I feel and react worse when sugar high, or the stress makes it rise from fight or flight response, or both). I'm trying to read up on cortisol.

TOFI probably sounds about right, as the 6kg I've lost has flattened my middle and despite eating more fats my cholesterol profile has improved significantly since following the advice of Jo and others.

Final question if I may please. I dont feel entirely great all the time on SR met (1g x2 a day), and the queasy feeling is in my head not gut, more like mild hangover. I'll discuss with DN and GP, but one suggestion I read 'if' I can't manage levels on pure diet and exercise is to take a very small dose of insulin whilst continuing a smaller dose metformin. Any thoughts?

Thanks again for your patience with me, I really appreciate it!

 

[mouseee]

I'm not sure any Dr would consider giving insulin with an hba1c as low as yours will be with LCHF if you're t2. Even your initial one was lower than many on here. ( I may be wrong on this but only saying what I perceive to be the case) I certainly wouldn't want to start on that road if i can help it. Plus, if T2 then you have insulin resistance and you'd still need help with your body using it properly so tablets would still be required.


Exercise can do all sorts to bs. Some find it goes up after exercise. I found running when high was a very bad move for me as it dropped me far too quickly and I crashed.

Chill, back up a bit, keep the LCHF diet going. It's working already. You just need to a fine tune it for you.

 

[mouseee]

Queasy feeling in head is more likely 'low carb flu'. I found a handful of salted peanuts sorted this for me as you can get low on salt when you start. Although there are better ways to do that!

 

[Chris12345]

Thanks Mouseee!

 

[HSSS]

Agree exercise can have lasting effects and stress can make them go up. Food is not the only thing that effects bgl. Sleep, illness, infection, pain, hormones, weather and temperature etc all do too to varying extents.

the queasy feeling might be the metformin, even the sr version. Or it could be a lack of electrolytes maybe. Make sure you’re getting plenty of magnesium and potassium as well as sodium. From foods if possible but a little supplementing helps some too.

I’d definitely not be thinking of insulin just yet. Your figures really aren’t so high, there’s loads of other meds than metformin and insulin too. Also it’s way too early in your low carb journey. You may well not need any meds at all soon!