What can I try next?

Starfish18

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Its almost 5 months since I was diagnosed and Ive been LCHF since but my levels have been very up and down during that time and I have asked for advise before so almost 4 weeks ago I started intermittent fasting 18/6 so after evening meal at 18.00 I eat nothing until lunch time the next day (12.00) apart from a coffee with 30g of double cream at 06.30 before work each day. At first my levels dropped straight away and I was starting to see high 4s before food and Low 6s after food. I was so pleased but a week ago my levels started to rise now I'm seeing high 6s/low 7s before food and I've even been 9.2 after food, nothing at all as changed with my diet, a typical days food for me is
06.30 decafe coffee with 30g of double cream
12.00 L tuna mayo, 2 x spring onions, 4 x cherry Tomatoes, few peppers, pack of pork scratchings. Decafe coffee with 30g of double cream
18.00 D homemade chicken BLT with mayo and sf Jelly with double cream with black tea.
I drink water though out the day
Yesterday I felt very low and emotional and had been awake since 3am so my levels were higher (thats when i saw the 9.2 after food - not a spike)
I don't seem to be harbouring a bug, don't seem to be any more stressed than usual walking 5-6 miles a day with work. I've tried new test strips and get same readings so I'm stumped. I've stopped counting carbs but when I was having 3 meals I was having roughly about 25-30 carbs a day. I've stopped snacking. What could I try next? I'm finding my journey is a roller-coaster :bag::(
Eta I am diet only
 

Antje77

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Sounds very frustrating!
I hope someone will come along with better idea's than I have. Have you had a C-peptide test?
 

Starfish18

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Sounds very frustrating!
I hope someone will come along with better idea's than I have. Have you had a C-peptide test?
It is frustrating.
No, I've not bad a c-peptide test. I've haven't had much h supoort from my gp surgery at all. I've seen c-peptide test mentioned a lot on here, what is it for exactly?
 

Guzzler

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Poor sleep directly affects bg.
 

Antje77

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It is frustrating.
No, I've not bad a c-peptide test. I've haven't had much h supoort from my gp surgery at all. I've seen c-peptide test mentioned a lot on here, what is it for exactly?
It tells you something about the amount of insulin you produce.
 

EllieM

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Sounds very frustrating!
I hope someone will come along with better idea's than I have. Have you had a C-peptide test?

Exactly what I was thinking as I read @Starfish18 's post. Of course, blood sugar's are raised by stress, so worrying about them is a bit of a self fulfilling prophecy, but I would be requesting one as the first thing to rule out. (Though I'm not sure whether a GP can order one, or it has to be a hospital diabetic clinic???)

A C-peptide test measures the amount of insulin produced by one's pancreas. T2s typically produce high quantities, because they are struggling to make their insulin work to process their carbs. T1/LADAs (LADA is a slow onset T1) will have low levels, because their bodies are gradually producing less and less insulin. If you're LADA then no amount of low carbing will help, because you're just not producing the insulin your body needs.... Unfortunately many many adult onset T1s start out misdiagnosed as T2s, so it is a check that needs to be done.
 

ert

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You are doing terrifically well in reducing your HbA1c from 95 to 50. I'm sure with the listed blood sugars you will reduce it further and are having a sight off week due to stress.

I had my c-peptide done after achieving 30 mmol/l with poached eggs and toast for breakfast 2 years ago. My insulin (c-peptide) is extremely low. Even lower in my last blood test (0.127 mmol/l. Less than 0.2 on diagnosis, like mine, indicates type 1 and insulin requirement.) Because I'm deteriorating, I have a referral for OCDEM this coming week.

I only dream of eating a BLT.
 
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Starfish18

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Exactly what I was thinking as I read @Starfish18 's post. Of course, blood sugar's are raised by stress, so worrying about them is a bit of a self fulfilling prophecy, but I would be requesting one as the first thing to rule out. (Though I'm not sure whether a GP can order one, or it has to be a hospital diabetic clinic???)

A C-peptide test measures the amount of insulin produced by one's pancreas. T2s typically produce high quantities, because they are struggling to make their insulin work to process their carbs. T1/LADAs (LADA is a slow onset T1) will have low levels, because their bodies are gradually producing less and less insulin. If you're LADA then no amount of low carbing will help, because you're just not producing the insulin your body needs.... Unfortunately many many adult onset T1s start out misdiagnosed as T2s, so it is a check that needs to be done.
Thank you for your reply I really appreciate it. Its just been assumed I am type 2 as my mum is type 2 and my grandma was.
I just worry ill have a fight on my hands getting a c-peptide test as the nurse is happy I've managed to get my hba1c down to 50 from 95 :( apparently im now in a good range :banghead:
 
M

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Probably just your body purging out all the glucose now that your insulin levels are no longer keeping it locked up in your cells.

Keep calm and carry on. Don’t put any in, burn off what’s already there.
 
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EllieM

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Thank you for your reply I really appreciate it. Its just been assumed I am type 2 as my mum is type 2 and my grandma was.

They really shouldn't asssume that. Remind your GP that a recent report states that 38% of adult onset T1s were originally misdiagnosed as T2. You need the test, if only to rule out LADA as a possibility.

https://www.eurekalert.org/pub_releases/2019-04/uoe-ato043019.php

The good news is that treatment for T1 is a rapidly improving and evolving process and T1s get better treatment from the NHS than T2s. The bad news is (ugh... insulin) but as a T1 for 49 years I can definitely say that it's not the end of the world, and I have much more dietary freedom than a low carbing T2.
 

Daibell

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Hi. Are you slim and have lost weight recently without trying? If so these are pointers to LADA. I had a C-peptide test done privately as my GP was also useless. It showed my insulin to be quite low. Fortunately I was finally offered insulin which was the only solution for me.
 

ert

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They really shouldn't asssume that. Remind your GP that a recent report states that 38% of adult onset T1s were originally misdiagnosed as T2. You need the test, if only to rule out LADA as a possibility.

https://www.eurekalert.org/pub_releases/2019-04/uoe-ato043019.php

The good news is that treatment for T1 is a rapidly improving and evolving process and T1s get better treatment from the NHS than T2s. The bad news is (ugh... insulin) but as a T1 for 49 years I can definitely say that it's not the end of the world, and I have much more dietary freedom than a low carbing T2.

They may have different rules in NZ but it would be very difficult to get a referral for a c-peptide test on the NHS unless they assume diagnostic uncertainty and other high-risk areas. They consider the specialist opinion (required to get a c-peptide test) if: ⁻ Age > 50 years but BMI <25 OR family history of immune disease ⁻ Age >25 but rapid progression to insulin ⁻ Age < 25 and BMI > 25 with Type 2 diabetes ⁻ Suspected monogenic / atypical / pancreatic diabetes.

EllieM, How did they diagnose you as type 1?

https://www.england.nhs.uk/rightcar...40/2018/07/nhs-rightcare-pathway-diabetes.pdf
 
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Starfish18

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Hi. Are you slim and have lost weight recently without trying? If so these are pointers to LADA. I had a C-peptide test done privately as my GP was also useless. It showed my insulin to be quite low. Fortunately I was finally offered insulin which was the only solution for me.
Im not overweight. I lost weight without trying but I put that down to starting a new job and doing a lot of walking this was before I was diagnosed. My weight loss has stopped now.
 

Starfish18

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They may have different rules in NZ but it would be very difficult to get a referral for a c-peptide test on the NHS unless they assume diagnostic uncertainty and other high-risk areas. They consider the specialist opinion (required to get a c-peptide test) if: ⁻ Age > 50 years but BMI <25 OR family history of immune disease ⁻ Age >25 but rapid progression to insulin ⁻ Age < 25 and BMI > 25 with Type 2 diabetes ⁻ Suspected monogenic / atypical / pancreatic diabetes.

https://www.england.nhs.uk/rightcar...40/2018/07/nhs-rightcare-pathway-diabetes.pdf
So I wouldn't get a c-peptide test done under the NHS?
 

ert

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Starfish18

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HSSS

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Or if it’s manageable you can get private insulin tests. Eg medicheks for £39
 

Starfish18

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@Starfish18

Have you had thyroid function tests prescribed by your GP.?
I haven't yet. Can the Thyroid affect your levels? My levels have been higher for the past week now after getting them down to 4-6s, which they were for 3 weeks when I started IF