Worried about ketoacidosis

[Winnie53]

miffli I continue to be concerned about you. While eating a keto diet, there are two explanations that come to mind immediately for ridiculously high blood sugars: 1) something is wrong with your pancreas or 2) you are battling a chronic infection. The only way I know to sort this out is to get lab tests done to determine if you now have an autoimmune type of diabetes - (LADA, type 1) - by getting a GAD antibody test and a C-peptide test (to determine how much insulin you're producing). Read this article... https://asweetlife.org/lada-and-gad-diagnosing-type-1-5-diabetes/

Other lab tests can be done to determine if you have a chronic infection.

Glad you're reaching out to your doctor. Please know miffli, if you have LADA or if you're developing type 1 diabetes, you will be able to get your glucose levels under control with a combination of the keto/low carb diet and insulin. Members of my diabetes group who use both use both the keto/low carb diet in combination with insulin are able to reduce the amount of insulin they need. For example, if they are using 30 units of insulin, they're able to reduce their insulin intake to 10 units. I'm sharing this with you because I want you to understand that all your hard work on learning how to do the keto diet will pay off big time if you have LADA.

Also, if you have LADA, you did nothing wrong to get it. It just happens to some diabetics. Because I have a genetic condition, ulcerative colitis, I am at much higher risk for developing LADA or type 1 diabetes. I've been lucky so far, but that could change tomorrow, or next week, or next year. There's nothing I can do to prevent it. If it happens, it happens.

But again, you may have a chronic infection.

Only a doctor can order the appropriate lab tests to rule out LADA, type 1 diabetes, or a chronic infection.

So relieved to hear you are reaching out to your doctor again. I'm worried about you miffli!

 

[HSSS]

Back again, i'm up at this hour due to anxiety, i have felt terrible the last few days, i went 18 hours without eating becuse i simply wasn't hungry at all, i then had two eggs with two rashers of bacon, half a tomato around 2pm yesterday- first thing all day, and last night i had cauliflower cheese, i was gardening in the afternoon but was so out of breath i only managed 20 minutes sticking some bulbs in and had to come in, walkign somewhat like a penguin too, i just felt stiff all over. Checked my blood pressure and it was slightly up, i was anxious so checked it three times 145/87 139/103 130/94 so took a perindropril and hoped for the best.

I had cauliflower cheese for dinner with some chorizo pieces in it and 2 hours later and feeling terrible my sugar meter readings were 19.5 .. like how.. I started keto a couple of weeks before Christmas, it started to work and i lost a stone but i have stopped dead now and i'm sure i'm actually going up again and i am definitely not eating as much as i did before. I'm contemplating giving the diet up and seeking other help only getting an appointment with the diabetic nurse here is hard work, i have to speak to the doctors first so they can authorise me going if for goodness sakes, i can't have an appointment at the moment, they're running scared due to coronavirus so i get an phone appointment next Tuesday evening... i give up.. i'm sat here making my way through a couple of litres of spring water in a bid to get my sugars down :|

I really think unless there’s some serious carbs you are missing somehow (lots of flour in the cauliflower cheese, a bucket of fruit juice etc ) you need to be getting some blood tests done to sort out why this is happening. I’d be back on the phone saying you need to at least speak with the dr or nurse on the phone before then in case action needs to be taken sooner than next week. In the meantime keep an eye on your ketones as well as your bgl. If both go up present yourself at A and E who will get you in front of an endocrinologist if they think it’s necessary.

It’s normal to eat less in terms of bulk on keto. It’s more nutrient dense and filling. Also your body learns to burn its own fat That’s why fasting becomes easier.

 

[Brunneria]

I second what @HSSS has said.
Monitor your bg, and get to see a medical professional for a proper diagnosis/tests to eliminate speculation.
I really feel for you, living in this state of unsupported not knowing why this is happening.

 

[MillieT]

Morning all, well you know after 2 litres of spring water i was so tired and fell asleep only to wake up on 20.3!! That really worried me, i managed to tear my head out of my pillow and get up and have called them and told them it is an emergency and I have an appointment with the diabetic doctor this afternoon- at least that shall get things started.

I don't have any flour at all- the cauliflower cheese i have has very little but somewhat watery cheese sauce thickened with ground almonds, not much and it does not really work out like a traditional recipe, i have been very good on this keto diet and have even downloaded an app on my phone-and there's me a total technophobe! I did not have 10 grams of carbs yesterday, i think i said i had fasted for 18 or more hours, had breakfast though was not early in the morning, more like lunch time and had my caulicheese last night.

Anyway, i have been up an hour i think and have butterflies in my tummy because i am so hungry?! but I daren't eat when my sugars are this high.. going to test them again shortly as that reading was at 10.27am i had just got up!! And i am chastising myself for getting up late!

You know you're all so wonderful and i really appreciate your advice and help with this, Thank you so much x

 

[MillieT]

an hour after getting up and my sugars being 20.3, they are now down to 16.8 and all i have had is one mug of tea.

 

[HSSS]

an hour after getting up and my sugars being 20.3, they are now down to 16.8 and all i have had is one mug of tea.

Good luck this afternoon. Don’t be fobbed off with just more drugs. Ask specifically to be tested for type 1, LADA, or 1.5 whatever they want to call it.

 

[MillieT]

Thank you @HSSS the sooner the better, i had some breakfast, i knew i should not have done but i was really so hungry, that has put me on to 21.5.. i'm just getting ready to go, i shall update when home again.

 

[Brunneria]

How did it go?

 

[MillieT]

Not sure whether that was worth my while, i showed him my sugar levels and explained everything, i said it has been suggested to conduct the tests advised above though he was reluctant because he said that my sugars were low when i was on the jardiance, though i did say yes and to what cost, constant UTI's and what have you, it seems you can't have the good life without some bad effects, he said that it is clear to him that the keto is not working and suggested i start the jardiance again and re introduce more carbs, i said i wasn't going to go over what i am doing no with regards to taking carbs so literally, i said tough and asked him if he knew what diabetes actually is?!

He asked me where i got the information from and who had suggested to have the tests done and i told him, he said well ok but not to take any of you seriously because (he is the surgery diabetes expert) as such knows what he is doing and knows what really should be best for me, he said that because i have had low sugars with the jardiance that is proof enough that i am type II and that these others tests are absolutely pointless but if i really must have them then we shall book you in.

So i have an appointment for fasting blood tests..... a week on Monday as they have no appointments before then unless I wish to make a 40 or so mile round trip to a walk in point at a hospital with excessive parking charges because it is a new build, the last time i went in there they lost my results!!

In the meantime i should carry on how i am going and that my readings of 21.5 are not life threatening so no need to worry, i only need to do that if they are over 30mmol.

 

[Winnie53]

Miffli, I don't understand your doctor's response.

So has he ordered the GAD antibody lab test and C-peptide lab test or not?

 

[MillieT]

I forgot to add with regards the jardiance, he said that if I was type1, 1.5 or anything else that it would not even touch me or bring my sugars down so this is basically his proof that i'm not.. i really don't know and i feel right out of my depth, when i ask questions i'm made to feel that i am just the dumb patient. I do know one thing, doctors manage your symptoms but do not sure you.. i'm quite upset right now.

 

[MillieT]

yes @Winnie53 but to have those GAd etc i have to have fasting blood tests.

 

[Winnie53]

So are the tests scheduled for February 17th or 24th?

miffli, it sounds like the "problem" is working with an overwhelmed, understaffed, underfunded, rural doctor. What you accomplished today is impressive, and likely was very difficult for you. This is an important first step in understanding what's happening to you.

I'm leaving now for the day. Just want to say, you did good today, real good.

 

[HSSS]

I forgot to add with regards the jardiance, he said that if I was type1, 1.5 or anything else that it would not even touch me or bring my sugars down so this is basically his proof that i'm not.. i really don't know and i feel right out of my depth, when i ask questions i'm made to feel that i am just the dumb patient. I do know one thing, doctors manage your symptoms but do not sure you.. i'm quite upset right now.

Not true. Has he never heard of a honeymoon? A pancreas still producing can have its last dregs of insulin wrung out of it it by meds, til it can’t. Scary that he wants to wait til 30 without mention of ketones if illness. Yes it might be ok. But it might not.

Well done indeed for standing your ground. I hope that he is right and we are wrong, however I’m not so sure he is. At least this way you’ll get some more definite answers and have a better idea of the way forwards.

In the meantime keep testing glucose and ketones. if you feel unwell seek help.

 

[HSSS]

@miffli how are you doing?

 

[MillieT]

Hello @HSSS
not very well to be honest, i had the blood tests but all i heard was they want some more- tomorrow, they say it was showing low sodium and i have no idea how, i ran out of my usual electrolytes but did not actually go without and got some emergency ones from the river same day delivery, My Vitamins Electrolyte plus. Anyway, tomorrow shall show, i feel dreadful and am wondering if the doctor may be right when he said give the keto up- i had cauliflower cheese tonight, no actual sauces, just bolied cauli with grated cheese over the top and in the over with some chorizo pieces and i was 15.9 again.. i'm running this high all the time, i have a water infection where i'm peeing clouds literally and moreso since i started taking these particular electrolytes, not sure if that has anything to do with it.

I feel like i'm going to pass out, really dizzy and nauseous today with a headache from hell and i tend to manage ok, just about, however, it's embarrasing but i spent perhaps the majority of the last week in bed, no desire to get up, taking my antihistamines/ sedatives every day and full dosage means i sleep for England whether i like it or not, much of the time i just wish it was all over and what's worse is that i have dreadful anxiety about leaving things unfinished and i also feel like my time is really near. come on hurry up i say

sorry to seem full of doom and gloom, but i have stuck to this keto really well, i have not faltered off of it since i started before Christmas and i lost weight- a stone but put some back on from thin air evidently, i'm fasting some days 18hrs, drinking litres of water, eating hunks of celery and salt- craving it like mad and well something isn't working is it.

 

[DCUKMod]

Oh dear Miffli - Sounds like things are way off beam for you. It sounds like someone needs to really lift the lid on this.

It sounds like you've been having various tests, almost on an ad hoc basis Were it me, (and of course I can be a grumpy, demanding old gal) I would be asking for a very wide panel of bloods (not just diabetes related) to be done, at one time, then the results of those, plus information on how you are, how you are feeling, symptoms, emotional state etc, toi be share with some experts. By experts, I would have in my mind Endocrinologists and Physicians for a bit of a multi-disciplinary overview.

It's all very well your GP picking their way forwards in baby steps, but from reading your content on here, it is striking me that you are becoming increasingly unwell and lower in your emotional state.

Now, I am someone who hates taking medication of any sort, but I think in your shoes, I would be asking the Big I question - just to get those numbers down a bit, and regroup some strength. I'm not suggesting insulin is an easy option, but nor is battling on as you are now.

Once things are in a better place, longer term plans could be made, which could involve getting back off insulin. We have seen many do it. But for now, getting you into a better place to make a considered plan for the way forward would seem the goal.

 

[Winnie53]

Miffli, I agree with DCUKMod, if this doctor isn't able to provide you an explanation of why your glucose levels are running so high after months of eating almost nothing and two rounds of lab tests, you need a referral to a specialist. An endocrinologist sounds good.

Something is wrong and this has gone on far too long. Hoping, hoping your doctor has ordered all the right lab tests to determine if you are ill, have an infection, or are no longer able to produce adequate levels of insulin.

You've more than stepped up and done your part. It's up to your healthcare providers now. Keeping you in my thoughts, hoping you're properly diagnosed and treated soon!

 

[HSSS]

@miffli yes please do get a referral and consider the short term options whilst this is sorted out. You need to know why this isn’t working and why you feel so bad. Make sure they have categorically ruled things in and out. And make sure they know what your pancreas is and isn’t capable of producing. Perhaps get a list of all the things they have checked along with the results collated and reviewed.

 

[MillieT]

I have been and had the blood tests, whilst i was there i asked the nurse to check my ketones and they are 2.2mmol, i have come home and for breakfast earlier well before going and i had 2 boiled eggs and a small amount of low sugar salad cream for some reason i just fancied it, my sugars right now are on 19.7.

I have a phone appointment this afternoon of a medication review only because of taking the perindropril as the side effects and leaflet says and i quote:

Do not take Perindopril Tablets  if you are allergic (hypersensitive) to perindopril or any of the other ingredients of Perindopril Tablets (see Further Information, section 6) or to any other ACE inhibitor.

 if you have had symptoms such as wheezing, swelling of the face, tongue or throat, intense itching, skin rash, fainting or feeling dizzy. If you have had these symptoms when you have taken an ACE inhibitor in the past or at any other time, this may be angioedema. If so, do not take Perindopril Tablets.

 if you are more than 3 months pregnant (It is also better to avoid Perindopril Tablets in early pregnancy – see pregnancy section.).

 if you have diabetes mellitus or impaired kidney function and you are treated with blood pressure lowering medicine containing aliskiren.

 if you are having dialysis or any other type of blood filtration. Depending on the machine that is used, Perindopril tablets may not be suitable for you

 if you have kidney problems where the blood supply to your kidneys is reduced (renal artery stenosis)

 if you are being treated with sacubitril/valsartan, a medicine for heart failure (see “Warnings and Precautions” and “other medicines and perindopril tablets”) If any of the above applies to you, talk to your doctor and do not take Perindopril Table

The diabetic doctor previously said to stop the keto diet and start taking the Dapigliflozin but i am worried due to the high level of ketones, i really don't know how to revert back to what i was doing before and am terrified of having the carbs suggested by them,i.e. porridge, brown bread and so forth.

At this very moment i'm feeling dreadful, butterflies in my tummy like i have not eaten for a day or so, i have that feeling you get in your lower jaw and socket when you are just about to be sick, but i have not been sick yet though i got up in the night as had a bout of acid reflux.

I have had perhaps 4 hours sleep only my head was whizzing about and i had dire anxiety.. i feel exhausted, i have blurred vision and a real bad pain in my right eye when i try to look side to side. i'm not sure what to do next, even by speaking to the doctor on the phone this afternoon i'm sure they shall tell me to start taking the medication and see how i go, but it is not like waving a magic wand now is it, i just wish to feel 'stable'