Keto for 3 months, HbA1c78..now....

[MillieT]

Gp told me to stop keto as was not doing me any good, he said i was putting on weight after losing 1.5 stones after the first month, had HBa1cc and it is 78 again or, gone up, he told me I have to start reintroducing carbs, i said, 'i don't do carbs, they affect me badly' he said, perhaps it is the wrong carbs..?! He said not to eat white bread, but wholemeal is a better alternative... boiled eggs plus ONE **** slice of wholemeal bread yesterday, i can't sleep, my tummy is distended, i have really bad pain left hand side under my rib, i was sick- acid reflux like the worst ever, i feel like i'm 15 months gone for heavens sake.- and he's the diabetic expert...(smashes head against keyboard)

I don't know why I keep coming here ranting about my super bad reaction to carbs, ok, what about tinned mince beef and powdered mash- less carbs that a fresh potato.. Nope.. on Jardiance and I have uti from hell... i feel ok if i do not eat carbs, but taking jardiance and just eating a very low carb / keto diet and it makes me ill on this medication so hance the carb thing... many of you know me well from previous posts about this sort of thing, why am i still getting nowhere..

 

[Tophat1900]

Then don't eat the carbs, they are not essential and don't listen to the GP's advice on diet. Those carbs he's telling you to eat are all highly refined processed carbs. It's terrible advice and you don't have to do as he says.

I don't think Jardiance helps with weight loss, but I don't know much about that drug. Others who take it may well offer their perspective.

Perhaps you can provide a typical day of what you eat?

 

[EllieM]

Gp told me to stop keto as was not doing me any good, he said i was putting on weight after losing 1.5 stones after the first month, had HBa1cc and it is 78 again or, gone up,

Have you been checked for T1/LADA. Many doctors assume T2 because of age or weight and do not do the tests. If you are slow onset T1 then keto will help for a while but eventually you'll stop producing insulin and need injections. ... That would be my first thought if you've been doing keto or low carb and your levels have gone up.....

Good luck.

 

[Brunneria]

How frustrating for you!

If your diet is a proper keto one, and your HbA1c is still that high, then you definitely need further investigation into whether you could be LADA or one of the other types of diabetes (such as MODY).

please insist on further testing.
You can always ask for a referral to an endocrinologist or specialist clinic. You can do this by phone, or by letter, if you don’t wish to have another appt with your unhelpful GP.

in the meantime, if certain foods make you feel that ill, it would be harmful to eat them. You may be experiencing specific food intolerances, such as gluten or potato reactions, that your doc has neither acknowledged or investigated. Again, you can ask for a referral for that too. Although I find simple avoidance is the best option for my food intolerances (most of which are carb heavy )

 

[MillieT]

Have you been checked for T1/LADA. Many doctors assume T2 because of age or weight and do not do the tests. If you are slow onset T1 then keto will help for a while but eventually you'll stop producing insulin and need injections. ... That would be my first thought if you've been doing keto or low carb and your levels have gone up.....

Good luck.

Yes i was and that was before the lockdown, i still have the results somewhere, he said i'm not LADA but a fairly confusing case. I was on insulin for nearly a year and it didn't do much for me yet the first week on jardiance gave me the lowest sugar readings I had had for over a year...

I wasn't on any medication for the last 3-4 months due to being on Keto but like i said, i lost weight then it came back with a vengeance and i had not changed anything, in fact a lot of the recipes came off here and other keto sites.

As i had said a long time ago, i fell out with the diabetic team in kettering because the head dietician or whatever said she was going to make it her project into getting me to eat porridge and bread, that was a year last January I believe and when i told her i wasn't well, they lost interest in helping me. Even to today where my gp super specialist says that to throw the keto diet out the window, it obviously isn't working for you and to reintroduce carbs and that has been extremely difficult, i know when i eat carbs, i go light headed, feel sick , act extremely lary for an hour or more and then pass out.

No, jardiance doesn't help with weight loss, i don't know where that was said? I have started back on it and have all the usual symptoms of it but also some days bad acid tummy and reflux, i can take 2 lanzoprazole and they don't even touch me.

I just mentioned elsewhere, iwent over to lactose free milk about a year ago, i tried gluten free and nothing came of that, since coming off the Keto i'm having other things like Turnip chips- when I can locate a turnip!!! I have actually started growing some Rutabaga this year.. fingers crossed.

 

[MillieT]

How frustrating for you!

If your diet is a proper keto one, and your HbA1c is still that high, then you definitely need further investigation into whether you could be LADA or one of the other types of diabetes (such as MODY).

please insist on further testing.
You can always ask for a referral to an endocrinologist or specialist clinic. You can do this by phone, or by letter, if you don’t wish to have another appt with your unhelpful GP.

in the meantime, if certain foods make you feel that ill, it would be harmful to eat them. You may be experiencing specific food intolerances, such as gluten or potato reactions, that your doc has neither acknowledged or investigated. Again, you can ask for a referral for that too. Although I find simple avoidance is the best option for my food intolerances (most of which are carb heavy )

Brunneria & anyone else... I don't mind sharing as no personal info here but the tests were done 5th march this year and the results were:

Diabetes, suspected type 2, patient wants clarification.

NT Pro
NT Pro BNP 16 pg/ml <300
C Peptide 1.64 nmol/L 0.37 -1.47
eGFR (CKD-EPI) 90 ml/min >60
(if afro caribbean multiply result by 1.159 ( Which i am)!!
Ferritin 272 ug/L 30-400
Haemoglobin A1c
Glycated haemoglobin 88 mmol/L <48

please note: significant change in HbA1c
Quoted upper reference limit is cut off for Diabetes mellitus (WHO 2011)

Liver function tests
Albumin 43 g/l 35-50
Total Bilirubin <3 umol/L <21
ALT 49 U/L 10-60
Alaline Phosphatase 74 U/L 30-130 (alkaline)
Total protein 70 g/L 60-80
LFT's
TSH 3.28 mU/L 0.30-4.20
Thyroid function
Crt & Electrolytes
Sodium 132 mmol/L 133-146
Potassium 4.5 mmol/L 3.5- 5.3

So there youall have it, i haven't got a clue what it all means!!

 

[DCUKMod]

Brunneria & anyone else... I don't mind sharing as no personal info here but the tests were done 5th march this year and the results were:

Diabetes, suspected type 2, patient wants clarification.

NT Pro
NT Pro BNP 16 pg/ml <300
C Peptide 1.64 nmol/L 0.37 -1.47
eGFR (CKD-EPI) 90 ml/min >60
(if afro caribbean multiply result by 1.159 ( Which i am)!!
Ferritin 272 ug/L 30-400
Haemoglobin A1c
Glycated haemoglobin 88 mmol/L <48

please note: significant change in HbA1c
Quoted upper reference limit is cut off for Diabetes mellitus (WHO 2011)

Liver function tests
Albumin 43 g/l 35-50
Total Bilirubin <3 umol/L <21
ALT 49 U/L 10-60
Alaline Phosphatase 74 U/L 30-130 (alkaline)
Total protein 70 g/L 60-80
LFT's
TSH 3.28 mU/L 0.30-4.20
Thyroid function
Crt & Electrolytes
Sodium 132 mmol/L 133-146
Potassium 4.5 mmol/L 3.5- 5.3

So there youall have it, i haven't got a clue what it all means!!

Millie - Looking at your blood results, that TSH is a bit of a red light to me.

In my experience, and a massive amount of reading ( as I am very atypically hypothyroid), people with healthy and efficient thyroid functions have a TSH of 2, or less. Above that it is a sign your thyroid is struggling.

Annoyingly, thyroid function is a cornerstone of our metabolic health. As 3 months have passed, it would make sense to re-run all of those tests, but certainly the thyroid function. When the thyroid function is tested, ideally you need TSH, FT4 and T3 scores, plus autoimmune antibodies.

Many labs will only test FT4 where the TSH is "in range", but in this areas, they are "gractious" enough to test TSH and FT4, which is a start.

What puzzles me is when you were declared a puzzling case, what action was taken in an effort to solve the puzzle?

In my own case, when an Endo declared "we'll probably never get to the bottom of those symptoms" (that were making my life horrid), I wanted to strangle him and be very rude (somehow I resisted), but my GP offered a second opinion with a named consultant. Why don't you do your research into "interested" Endos in your area, or even out of area (a second opinion can be named and out of area, if preferred), and ask your GP for a named NHS referral.

You need to get top the bottom of this.

If you are Afro-Caribbean, do you have sickle-cell anaemia or such like, and have you had a Fructosamine test? For some of your ethnicity, the HbA1c can be a bit ropey as a measure, with the Fructosamine being more accurate.

Sorry to ask so many (more!) questions, but I'm good at asking questions.

You need answers.

 

[MillieT]

Millie - Looking at your blood results, that TSH is a bit of a red light to me.

In my experience, and a massive amount of reading ( as I am very atypically hypothyroid), people with healthy and efficient thyroid functions have a TSH of 2, or less. Above that it is a sign your thyroid is struggling.

Annoyingly, thyroid function is a cornerstone of our metabolic health. As 3 months have passed, it would make sense to re-run all of those tests, but certainly the thyroid function. When the thyroid function is tested, ideally you need TSH, FT4 and T3 scores, plus autoimmune antibodies.

Many labs will only test FT4 where the TSH is "in range", but in this areas, they are "gractious" enough to test TSH and FT4, which is a start.

What puzzles me is when you were declared a puzzling case, what action was taken in an effort to solve the puzzle?

In my own case, when an Endo declared "we'll probably never get to the bottom of those symptoms" (that were making my life horrid), I wanted to strangle him and be very rude (somehow I resisted), but my GP offered a second opinion with a named consultant. Why don't you do your research into "interested" Endos in your area, or even out of area (a second opinion can be named and out of area, if preferred), and ask your GP for a named NHS referral.

You need to get top the bottom of this.

If you are Afro-Caribbean, do you have sickle-cell anaemia or such like, and have you had a Fructosamine test? For some of your ethnicity, the HbA1c can be a bit ropey as a measure, with the Fructosamine being more accurate.

Sorry to ask so many (more!) questions, but I'm good at asking questions.

You need answers.

When I saw the doctor he said my thyroid levels were slightly elevated and nothing to worry about, he was more concerned with supposed low sodium. I have only had a phone consultation since, they tried me on Forxiga and it made me unwell so hence why i'm back on Jardiance.

I am of afro carribean descendancy as in my Grandfather was Afro American, I don't think they're taking this into the equation. I shall look for the endo's and see if this brings anything only I cannot remember the last time I felt ok. Nothing else has been done due to the lockdown so i'm in limbo as usual, i really appreciate you asking lots of questions only it shows you're concerned.. Thank you!

 

[Mbaker]

Hi @Millie_ what I would say as someone from the same ethnic group is essentially the same towards anyone who has blood sugar dis-regulation, but with increased emphasis as Afro Caribbean descendants are more susceptible to diabetes than persons from other groups (bar South Asians and Hispanics). With this in mine it is wise to be more aggressive in the actions to control this disease.

Firstly the advice regarding checking for a different type of diabetes your health care team should actively confirm or otherwise.

There are many ways to do Keto, and there is alot of latitude, but I would do a basic version with no high gi starches whatsoever. If you have had a typical West Indian modern diet, then you will need to give your body a chance to remove years of starches and sugars; unfortunately the wholefoods such as rice and peas, yams, green bananas, plantains, bread fruit and the like, have crossed over with the SAD foods, and like everywhere else, animal fats replaced by seed oils. "We" have also fallen for the fast foods, eating this way alongside traditional dishes yields disastrous results and inevitable in my view quicker routes to diabetes.

I would suggest you focus on any animal protein, accompanied by either salads with no dressing, greens or always non-starchy vegetables (or combinations of these). The animal proteins can be cooked in any of the traditional ways, but without vegetable oils or sugar / honey. I have had many curried goat, oxtail, jerk chicken, stewed beef, cow foot, tripe, fried fish (coconut oil), with callaloo or low sugar veg (broccoli, cauliflower, radish, green beans, asparagus, courgettes). Rutabaga might be just a little too starchy at this stage of your journey. Take a look at my avatar to see where I started, I am now able to eat up to butternut quash, rutabaga (swede), beetroot and even satsumas (I do workout as well to assist this).

 

[MillieT]

Hi @Millie_ what I would say as someone from the same ethnic group is essentially the same towards anyone who has blood sugar dis-regulation, but with increased emphasis as Afro Caribbean descendants are more susceptible to diabetes than persons from other groups (bar South Asians and Hispanics). With this in mine it is wise to be more aggressive in the actions to control this disease.

Firstly the advice regarding checking for a different type of diabetes your health care team should actively confirm or otherwise.

There are many ways to do Keto, and there is alot of latitude, but I would do a basic version with no high gi starches whatsoever. If you have had a typical West Indian modern diet, then you will need to give your body a chance to remove years of starches and sugars; unfortunately the wholefoods such as rice and peas, yams, green bananas, plantains, bread fruit and the like, have crossed over with the SAD foods, and like everywhere else, animal fats replaced by seed oils. "We" have also fallen for the fast foods, eating this way alongside traditional dishes yields disastrous results and inevitable in my view quicker routes to diabetes.

I would suggest you focus on any animal protein, accompanied by either salads with no dressing, greens or always non-starchy vegetables (or combinations of these). The animal proteins can be cooked in any of the traditional ways, but without vegetable oils or sugar / honey. I have had many curried goat, oxtail, jerk chicken, stewed beef, cow foot, tripe, fried fish (coconut oil), with callaloo or low sugar veg (broccoli, cauliflower, radish, green beans, asparagus, courgettes). Rutabaga might be just a little too starchy at this stage of your journey. Take a look at my avatar to see where I started, I am now able to eat up to butternut quash, rutabaga (swede), beetroot and even satsumas (I do workout as well to assist this).

Thank you for your advice, I thought this too and i wish to make sure they treat me as such, I shall be seeking further help next week and let you all know the outcome..

The Keto i was following was predominantly off here, i have not had a full caribbean diet though I do indulge in curry goat.. actually, I had one last night.. I have been cooking oxtail, and chicken from kebabs to jerk, i don't eat much beef, i have been using rapeseed oil lately due to it being low cholesterol, they're always complaining mine is too high. Veg, all of those above that you mentioned except the green beans, though i eat bell and pointed peppers, spring onions, lettuce, olives, mushrooms and beanshoots sometimes, i have only had Turnip chips twice in the last 3 months only because has anyone tried buying one, seasonal stuff.. I have not eaten regular fruit since December, only recently have been having rhubarb. i only use maltodextrin free sweeteners and lactose free milk and occasionally treat myself to some pork scratchings.. i don't love them but it is psychological in that I gave myself a treat

Work out.... i can manage perhaps half an hour of gardening, a little digging- like a few spades if need be, i cut the grass and the garden is 120ft long, i can manage half, flake out for a while and then do the rest, i seriously have energy and strength issues.

 

[MillieT]

I thought i would mention, i ate a few hours ago, maybe 3 and because i feel terribly light headed, delerious even, slurring words and need to pass out for a while, my sugars are on 5.9, the highest they have been for a month now is 7.9 and the lowest 4.1

 

[EllieM]

I thought i would mention, i ate a few hours ago, maybe 3 and because i feel terribly light headed, delerious even, slurring words and need to pass out for a while, my sugars are on 5.9, the highest they have been for a month now is 7.9 and the lowest 4.1

https://www.drugs.com/jardiance.html

I've just had a look at the potential side effects of jardiance. Has your doctor considered that this drug may be causing your issues?

 

[MillieT]

https://www.drugs.com/jardiance.html

I've just had a look at the potential side effects of jardiance. Has your doctor considered that this drug may be causing your issues?

I thought everyone suffered from side effects from this and any others taken, i had told him about the uti's and is why he asked me to try the forxiga... i really didn't get on with that at all so hence why i'm back on Jardiance.

 

[Mbaker]

Thank you for your advice, I thought this too and i wish to make sure they treat me as such, I shall be seeking further help next week and let you all know the outcome..

The Keto i was following was predominantly off here, i have not had a full caribbean diet though I do indulge in curry goat.. actually, I had one last night.. I have been cooking oxtail, and chicken from kebabs to jerk, i don't eat much beef, i have been using rapeseed oil lately due to it being low cholesterol, they're always complaining mine is too high. Veg, all of those above that you mentioned except the green beans, though i eat bell and pointed peppers, spring onions, lettuce, olives, mushrooms and beanshoots sometimes, i have only had Turnip chips twice in the last 3 months only because has anyone tried buying one, seasonal stuff.. I have not eaten regular fruit since December, only recently have been having rhubarb. i only use maltodextrin free sweeteners and lactose free milk and occasionally treat myself to some pork scratchings.. i don't love them but it is psychological in that I gave myself a treat

Work out.... i can manage perhaps half an hour of gardening, a little digging- like a few spades if need be, i cut the grass and the garden is 120ft long, i can manage half, flake out for a while and then do the rest, i seriously have energy and strength issues.

I wanted to assist you with the rapeseed oil / cholesterol.

We know that if you put your hand in a fire, everyone bar none will get burnt, a scientific, repeatable absolute fact. The drive to lower cholesterol is based on a hypothesis and a repeated mantra, that just has to be true. I tried to find a video Zoe Harcombe did that showed referenced facts that person's with cholesterol in what is considered the normal range had increased death rate, particularly women faired better with increased cholesterol. I found a video that makes a similar point:

You may wish to review this thread https://www.diabetes.co.uk/forum/threads/why-seed-oils-are-not-good.174939/page-2

So the choice is do you believe lowering cholesterol is right for you, and do you trust an oil that to this day been changed both overtly and quietly to make it less toxic.

 

[MillieT]

I wanted to assist you with the rapeseed oil / cholesterol.

We know that if you put your hand in a fire, everyone bar none will get burnt, a scientific, repeatable absolute fact. The drive to lower cholesterol is based on a hypothesis and a repeated mantra, that just has to be true. I tried to find a video Zoe Harcombe did that showed referenced facts that person's with cholesterol in what is considered the normal range had increased death rate, particularly women faired better with increased cholesterol. I found a video that makes a similar point:

You may wish to review this thread https://www.diabetes.co.uk/forum/threads/why-seed-oils-are-not-good.174939/page-2

So the choice is do you believe lowering cholesterol is right for you, and do you trust an oil that to this day been changed both overtly and quietly to make it less toxic.

My brother is a Glidden diet fan and he is always harping on at tme to listen to Glidden regards cholesterol, i mention these things to my gp's and it was one that mentioned rapeseed oil due to the low cholesterol.. i have felt for quite some time that they're not actually trying to help me get better, in fact, they profit out of attempting to manage my symptoms... I just poured the rapeseed down the drain.