Anybody got any suggestions

[Lamont D]

Totally agree, I have 3 meals a day and fast from 7pm until 10am, only have a snack in the afternoon If blood sugar too low to drive home, always eat the fat on meat also, it’s the best bit.
Only downside is I’m 5ft 4 and weigh 48kg, I have no weight to lose. If I’m Ill I can lose half a stone in a matter of days, people already think I’m too thin and don’t eat

Weight only matters, when you are obese, (clearly not) or when you have an eating disorder when you eat and bring it back up later.(clearly not)
As long as your weight is stable and your health isn't effected.
Quite a few women pray for your weight!
This is all new to you and the thought of having a condition, you have never heard of is disturbing and difficult to get your head around. I know being told that I wasn't diabetic stunned me, having RH was mind boggling.
I think that you are doing these things to try and not worry too much, RH does have symptoms of anxiety. Take it easy.

Best wishes.

 

[Mbaker]

I have to have carbs on gliclazide, when I’m taken off it I cut all the starchy carbs only have homemade no grain bread and have more fat, butter on vegetables and coconut oil in tea & coffee, blood sugar always rises again at some point and the gliclazide returns,

The suggestion assumes you remove the glic, as it is so aggressive to the pancreas.

 

[HSSS]

blood sugar always rises again at some point and the gliclazide returns,

So the focus needs to be on what is triggering the rise. Is it a sneaky carb you haven’t noticed? An activity? Is is all of a sudden or a gradual rise of all levels? Detailed diaries should help identify if it’s an external cause.
Agree with all the others though taking glic, without a deficit in your own production, which causes hypos that you need to feed with carbs is circular and probably harmful in the long run imo.

 

[JoKalsbeek]

I was doing low carb, but got to the point where I was eating from getting home from work to going to bed everyday as nothing quite hit the spot, think that’s why a1c was 128

That's why I asked for specifics, actually... "Low carb" can mean a whole lot of different things to different people. (150 grams a day, nil carbs a cay... Anything in between). And just low carb without high fat and upped protein would indeed keep you grazing all day to keep your weight up.

I do think it's time for more testing. A long OGTT (short would be quite useless), maybe going back to square one with a new endo... Because you're not doing your pancreas any favours with the glic when you're already making loads.

 

[ert]

I had an oral glucose test in 1997 and diagnosed with gestational diabetes, no other medication, c-peptide test done in May this year
Itinerary c-peptide/creatine ratio 3.34 nmol/mol
Urine creatine level 1.70mmol/l

Did you mean nmol/mmol for the c-peptide UCPCR? Rather than nmol/mol. Could you double-check the units? The jury's out until you confirm.
https://www.exeterlaboratory.com/test/c-peptide-plasma/

 

[LittleGreyCat]

Totally agree, I have 3 meals a day and fast from 7pm until 10am, only have a snack in the afternoon If blood sugar too low to drive home, always eat the fat on meat also, it’s the best bit.
Only downside is I’m 5ft 4 and weigh 48kg, I have no weight to lose. If I’m Ill I can lose half a stone in a matter of days, people already think I’m too thin and don’t eat

Ta.

So if I am understanding correctly one of your main issues is to eat enough to compensate for your high energy burn rate and with your diet you aren't feeling the hunger pangs but know that you have to eat more.

I'm now wondering if more fats is the answer.
Mayo with everything, double cream, olive oil?
Start the day with bulletproof coffee?

If you are ill, do you stop exercising?
If so I'm wondering how you lose so much weight, unless it is water held in the muscles.

It may be wise to consult a sports nutritionist who specialises in diabetes.
You seem to have niche dietary needs.
In a non-diabetic this would usually be met with loads of carbohydrates; masses of pasta, for instance.
I assume that you are running on ketones most of the time.

 

[bulkbiker]

I must be type 2 or lada

I guess you mean T1 or LADA but your c-peptide says not..

 

[DEBBIESCOTT]

Did you mean nmol/mmol for the c-peptide UCPCR? Rather than nmol/mol. Could you double-check the units? The jury's out until you confirm.
https://www.exeterlaboratory.com/test/c-peptide-plasma/

 

[DEBBIESCOTT]

Sorry, just checked nmol/mmol

 

[DEBBIESCOTT]

Your c-peptide is within the normal range but it is quite close to the edge.
This means you are producing insulin, so looking at the result, why would they want to have you on insulin? Doesn't make sense.
The other thing that doesn't make sense and I did mean to ask in my previous post, is the glicizide. It is a B.S.lowering drug and is designed to help with insulin production but clearly that is not the case. I would have thought a Gliptin or another diabetic drug could be more beneficial or no meds and a carb free diet. Ditch the glic!
I would ask for an extended oral glucose tolerance test (5 hours), so it would show wether it is a reaction to the glucose you have Hypoglycaemia.

I have just reread your posts. A food diary is important, it will help your team, see the results of carbs on your B.S.. again I do believe that if your fasting and Hba1c levels are in normal levels before you eat, then you spike higher than normal, then you hypo, it is Hypoglycaemia. And ask your consultants if they have considered Hypoglycaemia as a consequence of carbs such as RH!
There are quite a few different Hypoglycaemic conditions.

If you haven't read the RH forum, there is some great information there. And it might convince you to get yourself sorted and get on to your endocrinologist about considering RH!

I wish I had this resource when I was going through what you are going through now!
I battled over a decade and numerous doctors and dsns and even one specialist that didn't have a clue.

Best wishes.

Thanks for the advice, I didn’t mean it went out of range after an hour just that it was higher than 2 hours( this is usually lower than before food) then can go up again later, been to my daughters for tea tonight had steak, mushrooms, roasted broccoli, cauliflower cheese & salad
Before food 5.6
After 1 hour 6.1
After 2 hours 4.5
After 3 hours 5.7
Only thing that takes me higher than 8.8 is running doesn’t matter if it’s a recovery run, tempo or intervals . Weights & swimming has virtually no effect & Peleton (only done after work a couple of hours after lunch makes it drop like a stone). Going to have 2 weeks off running now

 

[DEBBIESCOTT]

Weight only matters, when you are obese, (clearly not) or when you have an eating disorder when you eat and bring it back up later.(clearly not)
As long as your weight is stable and your health isn't effected.
Quite a few women pray for your weight!
This is all new to you and the thought of having a condition, you have never heard of is disturbing and difficult to get your head around. I know being told that I wasn't diabetic stunned me, having RH was mind boggling.
I think that you are doing these things to try and not worry too much, RH does have symptoms of anxiety. Take it easy.

Best wishes.

 

[DEBBIESCOTT]

It would stun me as well if I’m not after 24 years

 

[DEBBIESCOTT]

That's why I asked for specifics, actually... "Low carb" can mean a whole lot of different things to different people. (150 grams a day, nil carbs a cay... Anything in between). And just low carb without high fat and upped protein would indeed keep you grazing all day to keep your weight up.

I do think it's time for more testing. A long OGTT (short would be quite useless), maybe going back to square one with a new endo... Because you're not doing your pancreas any favours with the glic when you're already making loads.

Be nice if I could actually see a consultant, haven’t seen one in over 20 years

 

[DEBBIESCOTT]

Ta.

So if I am understanding correctly one of your main issues is to eat enough to compensate for your high energy burn rate and with your diet you aren't feeling the hunger pangs but know that you have to eat more.

I'm now wondering if more fats is the answer.
Mayo with everything, double cream, olive oil?
Start the day with bulletproof coffee?

If you are ill, do you stop exercising?
If so I'm wondering how you lose so much weight, unless it is water held in the muscles.

It may be wise to consult a sports nutritionist who specialises in diabetes.
You seem to have niche dietary needs.
In a non-diabetic this would usually be met with loads of carbohydrates; masses of pasta, for instance.
I assume that you are running on ketones most of the time.

Used to feel hungry, but from 1st gliclazide tablet in May never felt hungry, I fast from 7pm and don’t eat until 10am and exercise between 60-90 minutes in the morning, while on gliclazide I darent miss a meal, don’t think I am running on ketones as eating carbs at every meal to counteract the gliclazide

 

[DEBBIESCOTT]

I guess you mean T1 or LADA but your c-peptide says not..

Sorry yes, DSN thinks they just look at my bmi and think it can’t be type 2

 

[DEBBIESCOTT]

So the focus needs to be on what is triggering the rise. Is it a sneaky carb you haven’t noticed? An activity? Is is all of a sudden or a gradual rise of all levels? Detailed diaries should help identify if it’s an external cause.
Agree with all the others though taking glic, without a deficit in your own production, which causes hypos that you need to feed with carbs is circular and probably harmful in the long run imo.

 

[DEBBIESCOTT]

I go back to really low carb without the gliclazide, b/s seems ok to start with then starts creeping up again into double figures, happened twice this summer, 1st time it took 5 weeks 2nd time 10 days, even though I think I was doing exac the same both times

 

[Lamont D]

Thanks for the advice, I didn’t mean it went out of range after an hour just that it was higher than 2 hours( this is usually lower than before food) then can go up again later, been to my daughters for tea tonight had steak, mushrooms, roasted broccoli, cauliflower cheese & salad
Before food 5.6
After 1 hour 6.1
After 2 hours 4.5
After 3 hours 5.7
Only thing that takes me higher than 8.8 is running doesn’t matter if it’s a recovery run, tempo or intervals . Weights & swimming has virtually no effect & Peleton (only done after work a couple of hours after lunch makes it drop like a stone). Going to have 2 weeks off running now

Before food 5.6 normal.
One hour after 6.1 normal.
Two hours. 4.5 normal
Three hours 5.7 still normal and well within normal levels.

You have had a good balance of low carb food, and the readings are typical non diabetic levels. So a liver dump when running means that there is still insulin circulating and your liver is giving you a boost of glucose, to supplement the lack of energy, while doing the run. You might not be fat adapted or in Keto long enough to get your energy from your body other than carbs.
Do you have good energy levels before eating?
Is your brain, clear and symptoms are better?

Keep safe.

 

[DEBBIESCOTT]

Before food 5.6 normal.
One hour after 6.1 normal.
Two hours. 4.5 normal
Three hours 5.7 still normal and well within normal levels.

You have had a good balance of low carb food, and the readings are typical non diabetic levels. So a liver dump when running means that there is still insulin circulating and your liver is giving you a boost of glucose, to supplement the lack of energy, while doing the run. You might not be fat adapted or in Keto long enough to get your energy from your body other than carbs.
Do you have good energy levels before eating?
Is your brain, clear and symptoms are better?

Keep safe.

 

[ert]

Sorry, just checked nmol/mmol

Your c-peptide UCPRC supports substantial insulin secretion (> 0.6 nmol/mmol) which discounts type 1 (and Lada) after 3 to 5 years after diagnosis. However, with your BMI I suggest they need to check for MODY.
https://www.exeterlaboratory.com/test/c-peptide-plasma/
https://www.diabetesgenes.org/what-is-mody/
It may be worth reading Dr Jason Fung who writes about thin people and type 2 diabetes. Check out his Obesity Code.