Help please, can't bring levels down

Caroline2688

Active Member
Messages
31
Type of diabetes
Type 1
Treatment type
Insulin
After starting so well and reducing hba1c from 78 to 58 doing Fast800 (lost 33lbs so far) for some reason the last month or so I can rarely get levels into single figures despite eating well and not many carbs at all, and only complex carbs if I do have any. I walk every day and also have an exercise bike and and still my levels are in double figures most of the time at the moment. I drink plenty of water.

Where am I going wrong can anyone offer any pearls of wisdom please as it's doing my head in! Thanks in advance.
 

Resurgam

Expert
Messages
9,850
Type of diabetes
Type 2 (in remission!)
Treatment type
Diet only
Eating low carb should reduce blood glucose levels if you are a plain ordinary type two - if it isn't working then it might be that you are something more interesting and you really need to be consulting your GP or whoever is looking after your diabetes requirements.
There is the possibility that you are still eating too many carbs - to get to normal levels I was eating no more than 50 gm of carbs a day, and now I am down to 40gm, but if you are worried then maybe a phone consultation could help if your surgery is not yet doing face to face appointments.
 

Marie 2

Well-Known Member
Messages
2,395
Type of diabetes
LADA
Treatment type
Pump
One thing to watch for, you could be a type 1. A Type 1/LADA is misdiagnosed as a Type 2 40% of the time. One of the reasons is production of insulin slowly slows down until it fully stops, so change of diet and medications will work at first because you still produce some insulin usually for years.

The only way to end up knowing is an antibody test, if it's positive it's a sign of being a type 1. The other critical test is a c-peptide test. Low or low normal is a sign of type one because you aren't producing enough insulin, high or high normal is a sign of type 2 as you produce insulin, usually more because your body is trying to compensate because you are insulin resistant and not utilizing the insulin you have right.

I'm not saying you are, just keep it in mind because sometimes when things don't make sense, you could be a type 1 instead.
 
Last edited:

Goonergal

Master
Retired Moderator
Messages
13,466
Type of diabetes
Type 2
Treatment type
Diet only
Where am I going wrong

Sounds from your post like you have a glucometer. Are you testing immediately before and then again 2 hours after the first bite? That’d likely tell you which foods are the problematic ones.
 

Caroline2688

Active Member
Messages
31
Type of diabetes
Type 1
Treatment type
Insulin
Can you give some idea of your daily food and drink intake please? Are you on any meds for diabetes?

I eat low carb Mediterranean style with very low carbs...doesn't seem to matter what I eat my levels go up :( and are rarely single figures at the minute.
 

Caroline2688

Active Member
Messages
31
Type of diabetes
Type 1
Treatment type
Insulin
Eating low carb should reduce blood glucose levels if you are a plain ordinary type two - if it isn't working then it might be that you are something more interesting and you really need to be consulting your GP or whoever is looking after your diabetes requirements.
There is the possibility that you are still eating too many carbs - to get to normal levels I was eating no more than 50 gm of carbs a day, and now I am down to 40gm, but if you are worried then maybe a phone consultation could help if your surgery is not yet doing face to face appointments.
Yep and it was working but nowadays it's not.. some days I barely hit 20g carbs and bloods are still 11 12 13 sometimes 20! I'm thinking a call to GP is required too
 

Caroline2688

Active Member
Messages
31
Type of diabetes
Type 1
Treatment type
Insulin
One thing to watch for, you could be a type 1. A Type 1/LADA is misdiagnosed as a Type 2 40% of the time. One of the reasons is production of insulin slowly slows down until it fully stops, so change of diet and medications will work at first because you still produce some insulin usually for years.

The only way to end up knowing is an antibody test, if it's positive it's a sign of being a type 1. The other critical test is a c-peptide test. Low or low normal is a sign of type one because you aren't producing enough insulin, high or high normal is a sign of type 2 as you produce insulin, usually more because your body is trying to compensate because you are insulin resistant and not utilizing the insulin you have right.

I'm not saying you are, just keep it in mine because sometimes when things don't make sense, you could be a type 1 instead.
My daughter is Type 1 and I mentioned it when diagnosed that perhaps worth investigating but no, was assured at my age and weight it was bound to be T2...I disagreed but was dismissed...sigh
 

Caroline2688

Active Member
Messages
31
Type of diabetes
Type 1
Treatment type
Insulin
Sounds from your post like you have a glucometer. Are you testing immediately before and then again 2 hours after the first bite? That’d likely tell you which foods are the problematic ones.
I test throughout the day, doesn't matter what I eat though my bloods are not coming down, i can have zero carbs all day and still be 13! So frustrating
 

Caroline2688

Active Member
Messages
31
Type of diabetes
Type 1
Treatment type
Insulin
I eat low carb Mediterranean style with very low carbs...doesn't seem to matter what I eat my levels go up :( and are rarely single figures at the minute.
Sorry forgot to say no meds as politely declined gliclazide! Trying diet and exercise and was working but not now :(
 

Marie 2

Well-Known Member
Messages
2,395
Type of diabetes
LADA
Treatment type
Pump
It sure sounds like you could be a type 1.With that low of carb diet and your daughter being a type 1that would make complete sense. You need to be the squeaky wheel. Too many type 1's find out the hard way by going into DKA. I was misdiagnosed for over 8 years but luckily I was put on insulin early because the meds made me sick and I refused to take them. I truly don't know if you are a type 1, but it sure seems like you could be.

I was not obese, but I was overweight so they just labeled me a type 2. I had an uncle that was a type 1. I ate really healthy, I swam 75 laps in a gym pool daily and it didn't make sense to me that I was a type 2. I was told no a couple of times when I asked by a specialist and my GP and they never even tested me. It wasn't until I switched doctors that I was tested and diagnosed right. Unfortunately 40% of type 1's being misdiagnosed is a current number, plus 50%of type 1's are diagnosed after the age of 30.

I think you need to stress your daughter's a type 1, and maybe how few carbs you are eating so you can get tested. Either that or switch doctors? I think it's more tricky in the UK so maybe someone has ideas how to go about getting tested for being a type 1.

The other thing I want to stress is getting ketone strips.They are pretty cheap here. About $6-10 a box. If you have any significant amount of ketones and you very well might since your blood sugar numbers have gone up so much you need to get to a hospital. DKA is caused from a lack of insulin, which type 1's are prone to when not getting insulin.

https://www.diabetes.org/diabetes/complications/dka-ketoacidosis-ketones
 
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JoKalsbeek

Expert
Messages
5,937
Type of diabetes
I reversed my Type 2
Treatment type
Diet only
My daughter is Type 1 and I mentioned it when diagnosed that perhaps worth investigating but no, was assured at my age and weight it was bound to be T2...I disagreed but was dismissed...sigh
Get C-peptide and GAD tests done. If you're still high on virtually no carbs, and they just do a guesstimate of your type based on age and weight, that's no definite diagnosis and you're leaning towards another type. If they won't test, get it done privately and slap them over the head with it if the results are a T1 variant.

You really do need to know for sure.
Hugs,
Jo
 

Caroline2688

Active Member
Messages
31
Type of diabetes
Type 1
Treatment type
Insulin
Get C-peptide and GAD tests done. If you're still high on virtually no carbs, and they just do a guesstimate of your type based on age and weight, that's no definite diagnosis and you're leaning towards another type. If they won't test, get it done privately and slap them over the head with it if the results are a T1 variant.

You really do need to know for sure.
Hugs,
Jo
Yep totally agree, I suggested worth checking but was dismissed out of hand as no spring chicken and not exactly slim (nurse's words!)

Low carb was working but suspect honeymoon period?

I'll try and get GP to test but will go privately if I have to - had to do this with my thyroid too to prove I needed T3 so know the drill sadly
 

Caroline2688

Active Member
Messages
31
Type of diabetes
Type 1
Treatment type
Insulin
It sure sounds like you could be a type 1.With that low of carb diet and your daughter being a type 1that would make complete sense. You need to be the squeaky wheel. Too many type 1's find out the hard way by going into DKA. I was misdiagnosed for over 8 years but luckily I was put on insulin early because the meds made me sick and I refused to take them. I truly don't know if you are a type 1, but it sure seems like you could be.

I was not obese, but I was overweight so they just labeled me a type 2. I had an uncle that was a type 1. I ate really healthy, I swam 75 laps in a gym pool daily and it didn't make sense to me that I was a type 2. I was told no a couple of times when I asked by a specialist and my GP and they never even tested me. It wasn't until I switched doctors that I was tested and diagnosed right. Unfortunately 40% of type 1's being misdiagnosed is a current number, plus 50%of type 1's are diagnosed after the age of 30.

I think you need to stress your daughter's a type 1, and maybe how few carbs you are eating so you can get tested. Either that or switch doctors? I think it's more tricky in the UK so maybe someone has ideas how to go about getting tested for being a type 1.

The other thing I want to stress is getting ketone strips.They are pretty cheap here. About $6-10 a box. If you have any significant amount of ketones and you very well might since your blood sugar numbers have gone up so much you need to get to a hospital. DKA is caused from a lack of insulin, which type 1's are prone to when not getting insulin.

https://www.diabetes.org/diabetes/complications/dka-ketoacidosis-ketones
Yes I'll prepare to squeak! Less than 20g carbs yesterday, walked 3 times, still 11.1 this morning - it just isn't coming down!
 

Marie 2

Well-Known Member
Messages
2,395
Type of diabetes
LADA
Treatment type
Pump

KimmiBW

Newbie
Messages
1
Just a thought.. but depending on your age, hormones can wreck ABSOLUTE havoc on your sugars... stress too! I say that stress is my enemy not sugar! No matter what I do some days (even on a water fast so no carbs let alone food consumed) I ride high all day. I’m type 1, 49 years old, weight is not a problem, eat mostly raw veg and protein shakes, ride my peloton bike daily and test on average 12-16 times a day, take covering insulin whenever I need. Thanks to hormones in the last year I can ride high at a 10-12 all day no matter what I do.. the joys of middle age! Maybe ask for your hormones to be checked as well as bloods for type 1. Good luck!
 
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Daibell

Master
Messages
12,642
Type of diabetes
LADA
Treatment type
Insulin
Hi. Yes, do lean on your GP for the two tests or pay and have them done privately as I did. It does sound like you may be LADA. I would take the Gliclazide. It has very few side effects apart from hypos if the dose is too high and your beta cells are still producing. I never got near hypos even at full dose. Gliclazide use isn't good long-term but insulin is the right answer if you need it.
 
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NicoleC1971

BANNED
Messages
3,451
Type of diabetes
Type 1
Treatment type
Pump
Yep totally agree, I suggested worth checking but was dismissed out of hand as no spring chicken and not exactly slim (nurse's words!)

Low carb was working but suspect honeymoon period?

I'll try and get GP to test but will go privately if I have to - had to do this with my thyroid too to prove I needed T3 so know the drill sadly
Other things are hormones (menopause?), stress and illness . Illness can give you massive insulin resistance (a type 1 has to double or triple their insulin to get past it for example).
Be hopeful that what you've already done has been working so either your gluccometer is wrong , you are ill/stressed/menopausal or your beta cells are under attack in which case all the things you are already doing should really help them in any case.
 

PenguinMum

Expert
Messages
6,782
Type of diabetes
Type 2
Treatment type
Diet only
Yep totally agree, I suggested worth checking but was dismissed out of hand as no spring chicken and not exactly slim (nurse's words!)
I think your DN is wrong not to mention rude. It is always right to check in your circumstances, after all your body, your health. If it were me I would ring my GP and politely insist it needs to be addressed urgently and they should get you in front of an Endo very soon so you can have the necessary tests. Best wishes.
 
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JoKalsbeek

Expert
Messages
5,937
Type of diabetes
I reversed my Type 2
Treatment type
Diet only
Yep totally agree, I suggested worth checking but was dismissed out of hand as no spring chicken and not exactly slim (nurse's words!)

Low carb was working but suspect honeymoon period?

I'll try and get GP to test but will go privately if I have to - had to do this with my thyroid too to prove I needed T3 so know the drill sadly
Honeymoon's an option indeed. I'm sorry you went through the same thing before with your thyroid... :( I am glad though that you've already proven yourself to be an excellent advocate for your own health in this respect. Some people'd think themselves an inconvenience or whatever, but it's your body, you'll have to live in it for quite a while yet. Better stick up for it! Do keep us posted eh. And good luck!
Jo