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Worried about ketoacidosis

I know this.

I also know that there is no ketoacidosis without ketosis. It's in the name - ketoacidosis is an acidosis caused by free-running production of ketones, whether from fat (diabetes and starvation), alcohol, or from ingesting exogenous ketones.
 
Ellenor2000 said:
Have you been assessed for anti-beta cell/anti-insulin type antibodies?
Click to expand...

That's a good question Ellenor2000. Am very curious as to what lab tests were ordered. And the results.

I don't know how miffli has managed to be so patient with her doctor. He doesn't seem to "get" his role in this...to find an explanation for why her glucose levels haven't come down significantly in 8 - 10 weeks on the keto diet.

I've engaged in health advocacy for 30 years. My gut is telling me the doctor views miffli as a problem patient. In cases like this, I'd normally ask if the person would submit the proper paperwork to give me permission to view the file, or get a copy of the file. But that's not possible. If I'm right, that the doctor is not taking miffli's symptoms and needs seriously - (it happens occassionally) - the solution is to get different doctor, but because she lives in a rural area, I also understand to do this she would have to drive much further for medical care.
 
Ellenor2000 said:
Have you been assessed for anti-beta cell/anti-insulin type antibodies?
Click to expand...
Is this the same as C peptide and what have you? if so, i believe so recently and am still waiting for some kind of advice as to their findings... appointments are a little thin only they're busier than usual.
 
miffli, the antibody tests are different. You can go onto the type 1 or the LADA subforums and ask "How are LADA and type 1 diabetes diagnosed? What lab tests should I ask for?"

I believe you requested the C-peptide and the GAD antibody test, but I believe there are other antibody tests too. Over the years, I've read that type 1's were delayed in diagnosis because the first antibody test they had showed no problem, but when they had a different type of antibody test, that test show there was a problem, and they're diagnosis was changed to from type 2 to type 1.
 
i'm so tempted to take a dose of Forxiga but am worried because i came off Jardiance when starting the keto diet, my ketones are still 2.5 mmol and sugars after dinner tonight went to 17.6 and now down one point to 16.6, the last time i tried taking one i had the worst tummy ache...
 
miffli, don't do that. Here's why... If you take that medication, it could throw you into ketoacidosis and land you in the hospital again.

A suggestion made earlier, and it was a good one, was to consider injecting insulin temporarily to get your glucose levels back down. How long you'd need to stay on the insulin varies from person to person. If done with the keto diet, it's possible that you could then slowly back off the insulin and eventually completely come off of it. Or not. You won't know until you try.

All that said, I'd hold off until you know the results of your C-peptide and GAD antibody test.
 
@miffli - I admire your patience enormously, although I do wonder if it's more you are totally "battle weary" and can't face another fight? However, to my point, I think you are actually being far to nice to your Doctor.

Your GP doesn't seem to understand just how you feel about your predicament, and how unwell you are feeling. If you are unable to be up and about, you are unwell. He is quite happy for you to wait until some sort of magical gap appears in their super stretched diary. Of course, this isn't helped by the coronavirus gubbins going on at the moment. I feel sure they are seeing a lot of patient panic, whether justified or not.

In my view, (and if it were me, I my head would be exploding from frustration), you need to be seen sooner than "sometime soon". In your shoes, I would be asking for an urgent appointment. if one was not forthcoming to be seen this week (Yes, I know it's Thursday already), then I would ask for a home visit. I wouldn't expect to receive a home visit, but I would hope it might focus their minds on how unwell I was feeling.

If having done that an appointment was still not forthcoming, I would consider going to an urgent care walk-in, or to A&E. If you rock up to A&E (and trust me, I'd be feeling devastated if it came to that), it costs the surgery something like £75, so they are not going to want that to happen.

If all of that doesn't bear fruit then a formal complaint is in order. If you are talking about feeling as if your time is near, and in lots of ways you wish it would hurry up, you are not in a "wait and see" situation.

It's time to get serious. It's time for action.

Actually, in your shoes, I might actually have a tearful tantrum with them - if I could find the energy.

(I've actually been thinking back to when I was frustrated beyond measure with temperature regulation issues. My GP was incredibly supportive, but, by her own admission had no clue how to help me really.

I wrote a couple of letters to her, prior to telephone consultations, in which, aside from the material facts, I just wrote about how I was feeling - low mood, frustration etc - from the hip, so that she really got it. Probably one or two of your posts on here could be the bones of a letter to your own GP.

After one such letter, my GP phoned me earlier because she was concerned about how down and frustrated and low I had expressed myself as feeling, and asked if I thought I had depression. I didn't I'm sure, but sometimes it is good they know, warts and all what gives.)

Miffli, were I closer, I'd offer to advocate for you. I know some folks have used services, such as these folks. I think this sort of service is available in most areas, and it could be worthwhile putting a call in, just to see if they have a view on the way forward. I know if it comes to an official complaint, these would be the sorts of folks I would use as a sounding board, or to advocate for me.

https://healthwatchnorfolk.co.uk/

Miffli - something has to give here, and it can't be you!
 
@DCUKMod that was very kind of you, i realise this but am exhausted and tired of banging my head against a wall, they did offer to help in sending me to a Desmond clinic which i was so ill i didn't go but then i'm told they would sit there and tell me to eat carbs..again..

i just got up today as could not sleep last night due to anxiety and in the end cried myself to sleep, sometimes it's kind of comforting you know, anyway, short of breath and tight chested this morning and on 19.1mmol and i have not had a cup of tea yet :| it's here alongside my inhalers!

A& E is looking good but i'm also worried due the thevirus situation, if the doctors surgery is telling people to stay at home an dbook phone appointments, are they that worried, is it all propaganda, i don't wish to contract anything right now as that would surely finish me off.
 
I too would be heading to A and E about now in your shoes having failed to get anywhere with the gp, feeling so Ill and getting no answers. They only other thing is I’d ask for an emergency Gp appointment telling them that if it’s refused that’s where I would be heading. Not a threat or blackmail, just facts.

I don’t think the emergency depts will be letting people suspecting Coronavirus in and leaving them in waiting areas, screening them off and isolating them in cabins in the car park is what I’ve heard (maybe wrong of course). At the moment it’s not that widespread and your current state of health is a more immediate need/risk. Just touch as little as possible, keep your personal space and wash hands well whilst there.
 
Well at last i have some news, I filled in an online form nhs/surgeries type app, put in my symptoms which went to the surgery direct and on the onus that i would receive an answer within 24 hrs, i had a phone call to go in immediatley- go figure after advsing i was going to walk into A&E, anyway, i was really pleased i got the appointment and he was very helpful.

My blood results came back normal apart from C peptide being elevated and i am supposedly a reasonably complex case and very insulin resistant, as such he explained the keto diet would not work.?! if anyone can shed any light on that then please do so.

I have been placed on Vipidia 25mg as of immediate effect and i was right- or @Winnie53 was not to take the Forxiga! I am on this medication until there is an appointment with the nurse and she is going to be injecting me with Glp1 i think he said.

So a huge thank you to you all for your help, @DCUKMod, after reading your letter today it did push me even more, all of you have been urging me to make things happen with them, i believe i finally have.
 
miffli, the reason I became a health advocate is because 30 years ago I struggled for four years with a doctor who prescribed and kept me on a medication that made me worse instead of better then preceded to prescribe more medications to treat the side effects of the first medication. After all that time, I got a lucky break. Circumstances forced me to get another doctor. That's when I learned that my diagnosis and treatment had been wrong all along and within a few months I was able to resume my life.

I liked that doctor. He was very kind to me. I trusted him completely. I really thought he was providing me best care available.

The problem with your doctor is that he's not keeping up with best practices for diabetes care and even worse he did not immediately take you off a medication that may be causing you significant side effects. Also concerning is that he is withholding information from you regarding your lab tests.

In situations like this the problem is not you. It's the doctor. Perhaps it's time to get emergency care elsewhere. I'm not sure how you should proceed because I don't have an even basic understanding of how your medical care system works.

I continue to be very concerned for you. You clearly are not receiving appropriate care. Hoping hoping someone in England can help you get care elsewhere...and soon.
 
To be honest i just feel that they're possibly inundated though i may be being too kind, i have never been given a read out off hand after any test here in the UK, you have to ask for them unless others are given different treatment elsewhere, i realise the NHS is strapped, jesus, we paid for the NHS for years building it up and they give treatment away free and us elders are swept to the side, well, something like that and i don't wish to become political... but we all know the UK is an absolute farce right now.

When i spoke with him today he was being kind and helpful, he did seem somewhat stressed about it all because of having continued issues with my case and getting my sugars down to an acceptable level, even when on the insulin dosage twice a day that did not even touch me for some reason, it has only been the Jardiance that has got them down lower out of all the treatments I have been on.. i am keeping my fingers crossed that this new medication works, i shall not look at what side effects it may give else i shall be in despair. I am not the best patient for taking tablets, i just don't like taking anything unless under duress which I am right now, all this has frightened me, i'm not afraid to die, far from it, i am more worried about having a long prolonged and painful one.
 
Thanks miffli, going to have a look around for more information.

There's two approaches to treating diabetes: treating the symptoms or finding and treating the root cause of the symptoms.

What's throwing me is... If you're producing adequate insulin, why are your glucose levels running so high?

If severe insulin resistance is the cause, why has your insulin resistance not improved on the keto diet?

That's what's throwing me.

Perhaps someone here more knowledgeable than I can answer that question...
 
Were any checks made for infection of any kind? Just trying to understand why with a good amount of insulin, and very few carbs, glucose is raised. Something is raising it and it’s not diet or lack of insulin. I would want to know what.

Did the dr actually explain why he thinks the keto diet wouldn’t work if overproducing insulin as you are, or simply state it as a “fact” ?

Vipidia is also known as Alogliptin and works in part by increasing the amount of insulin produced by your body, which then controls the level of sugar in your blood. It also reduces the amount of a substance called glucagon being produced by your pancreas. Glucagon causes your liver to produce more sugar; so, by reducing the amount of glucagon in your body, this also helps to reduce the levels of sugar in your blood.https://www.nhs.uk/medicines/alogliptin/

https://www.diabetes.co.uk/diabetes-medication/incretin-mimetics.html Glp1 medicines work by copying, or mimicking, the functions of the natural incretin hormones in your body that help lower post-meal blood sugar levels These functions include:
  • Stimulating the release of insulin by the pancreas after eating, even before blood sugars start to rise.
  • Inhibiting the release of glucagon by the pancreas. Glucagon is a hormone that causes the liver to release its stored sugar into the bloodstream.
  • Slowing glucose absorption into the bloodstream by reducing the speed at which the stomach empties after eating, thus making you feel more satisfied after a meal
Both of these will hopefully address the symptoms of high blood sugars but doesn’t address the cause of why they are so high whilst not eating many carbs at all. As you say the reason your own insulin is already high would appear to be due to insulin resistance - its increased to try and compensate. The drugs will do more of this.

I'm confused too.
 
I just had sodium checked, amongst other things. My results were given in mmol/L With a range of 133 - 146 so if this matches your lab, yours is slightly low.
 
HSSS, I continue to be confused. The information you shared is very helpful. Thank you.

In a situation like this I'd definitely seek a second opinion with an expert on diabetes who regularly uses fasting and the low carb/keto diet with their patients.

Hoping, hoping someone comes along to help miffli, publicly or privately. All I care about is miffli getting the right tests and the right treatment.

In the past, all I had to do was find a qualified expert to weigh in on a case.

This is an appeal for help from the forum.

Does anyone on this forum know a health care provider in the UK who specializes in diabetes and the low carb/keto diet that could be persuaded to look at miffli's lab tests to date and offer input on what should be investigated next?
 
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