Worried about ketoacidosis

[EllieM]

Any female with bgs like that is pretty well guaranteed to have thrush, even if no uti. And infections can do awful things to your sugar levels. I can't understand why the doctor isn't treating that first. (Or maybe they've cultured up some urine and there is no uti?)

 

[MillieT]

That was a fasting C peptide level that i placed here earlier! They said i didn't need to fast but i was mistaken. i just saw something on the form too, it has eGFR ( CKD-EPI) 90 m/min >60 and underneath it says if afro caribbean multiply result by 1.159.. Actually, I am not outwardly afro, my grandaddy was a GI here in the war, the actual colour has diluted out of me and i'm Ivory though do have locks and all the other usual afro inheritance, I'm saying this because i feel it must be taken account of and hadn't actually realised.

 

[MillieT]

Any female with bgs like that is pretty well guaranteed to have thrush, even if no uti. And infections can do awful things to your sugar levels. I can't understand why the doctor isn't treating that first. (Or maybe they've cultured up some urine and there is no uti?)

Every time i take a sample into them they say it comes back clear yet it can't be because i buy a lot of Canesten, i should know at my age what thrush is like and they just don't seem concerned.

 

[Winnie53]

That was a fasting C peptide level that i placed here earlier! They said i didn't need to fast but i was mistaken. i just saw something on the form too, it has eGFR ( CKD-EPI) 90 m/min >60 and underneath it says if afro caribbean multiply result by 1.159.. Actually, I am not outwardly afro, my grandaddy was a GI here in the war, the actual colour has diluted out of me and i'm Ivory though do have locks and all the other usual afro inheritance, I'm saying this because i feel it must be taken account of and hadn't actually realised.

miffli, they told you you didn't have to fast? Could you read this brief article and tell me if they instructed you correctly?

https://www.diabetes.co.uk/c-peptide-test.html

Also did they give you the GAD antibody test?

 

[MillieT]

no, i was mistaken, i just thought it was fasting so i did anyhow, not that it mattered but still, they just asked me to go in for blood tests, the earliest appointment was 10.30am, i should have known it wasn't fasting due to the time, usually if fasting they're far earlier in the morning, that was me not thinking.

Nothing on the form says GAD but he said they were all supposedly normal, i'm sure he did, i could be mistaken, i get very foggy you know.

 

[MillieT]

ohh, i just noticed, that wwas Ha1c Haemoglobin A1c = Glycated Haemoglobin 88

underneath it says
Please note: significant change in HbA1c
Quoted upper reference limit is diagnostic cut off for Diabetes Mellitus ( WHO 2011)
For more information and sends to a website re tests.

So if mine have increased since before the keto diet i had got them down to 68 from over 100 in under a year, now they're 88 mmol... that is probably why i feel yukk..

 

[MillieT]

lol, i just read that and it says to fast for 8-12 hours, i did just that and they said i didn't need to..omg!

 

[Winnie53]

That's good that you fasted. I have two more questions...

Did you drink something with an artificial sweetener prior to the C-peptide test?

Did they do the GAD antibody test for you miffli?

 

[HSSS]

You need new drs. I have zero faith in yours at this point no matter how “nice” they seem.

they need to treat thrush/uti’s and take you seriously about them. This is appalling.

you need a referral to a diabetes specialist. There are other antibodies than just gad. An hb1ac and blood glucose levels rising despite keto. Many medications having little effect.

 

[Brunneria]

Please insist on a referral to your nearest diabetes clinic @miffli
As soon as possible.

 

[DCUKMod]

@miffli - if you have £200-£250 you could spare, it could be worth asking your GP for a private Endo referral. Choose your man/woman and rock up and see them. That usuallyfast-tracks things, and puts you in control.

(That said, the Endo I see privately only does one session a month at our local-ish Spire, so he can be slow to see.)

 

[MillieT]

Please insist on a referral to your nearest diabetes clinic @miffli
As soon as possible.

@Brunneria , I daren't, I went to Kettering and Corby Diabetic clinics with me ending up walking out, the one at Kettering, she said she wanted to aim to get me eating porridge and bread as they're healthy carbs, then more insulin and meds which clearly were not working. At Corby it was the nutritionist and i, we fell out because she said pretty much the same, a mid 20's fresh out of college who learned everything about diebetes out of a book and even argued that I was misinformed... please excuse but whomever you are, if you are going to try and force me to eat bread or porridge get lost as you are disillusioned and are giving people misinformation, i even felt with my anxiety they were trying to kill me off.

I suppose I could try the Peterborough one.. i would not hold out for that one as am completely losing faith in the entire system, if it were not for the Northampton Oncology department, I really would have given up by now.. at least they have some idea what they're doing.

@HSSS Even though I have lived here for four years i only changed my gp about 2 and this is completely different to my old one where i had been with them for over 10 years, at least i got to see a female gp and things were much better then but they're 20 miles away and too far to keep travelling to and hence why i changed, I am also out their catchment area, this is all i can have here.. if i had the money i would move tomorrow.

Unfortunately I do not have the spare to go to see a private endo right now.

Morning sugar levels today are 19.2 it seems a pattern, yesterday= 19.0 - and days before 19.2 -19.1- 18.6- 19.1

 

[Brunneria]

@Brunneria , I daren't, I went to Kettering and Corby Diabetic clinics with me ending up walking out, the one at Kettering, she said she wanted to aim to get me eating porridge and bread as they're healthy carbs, then more insulin and meds which clearly were not working. At Corby it was the nutritionist and i, we fell out because she said pretty much the same, a mid 20's fresh out of college who learned everything about diebetes out of a book and even argued that I was misinformed... please excuse but whomever you are, if you are going to try and force me to eat bread or porridge get lost as you are disillusioned and are giving people misinformation, i even felt with my anxiety they were trying to kill me off.

I suppose I could try the Peterborough one.. i would not hold out for that one as am completely losing faith in the entire system, if it were not for the Northampton Oncology department, I really would have given up by now.. at least they have some idea what they're doing.

@HSSS Even though I have lived here for four years i only changed my gp about 2 and this is completely different to my old one where i had been with them for over 10 years, at least i got to see a female gp and things were much better then but they're 20 miles away and too far to keep travelling to and hence why i changed, I am also out their catchment area, this is all i can have here.. if i had the money i would move tomorrow.

Unfortunately I do not have the spare to go to see a private endo right now.

Morning sugar levels today are 19.2 it seems a pattern, yesterday= 19.0 - and days before 19.2 -19.1- 18.6- 19.1

I am not talking about getting a referral to a nutritionist.
I am suggesting that you get a referral to a diabetes clinic to see a consultant. Then you make them look at your readings and your health history and your reactions to medication.
Your doctor is failing you, and unless you take action on this you will continue to see high blood glucose readings, continue to feel dreadful, and eventually those readings will cause further ill health and diabetic complications.

I realise that your anxiety makes this all very hard for you, but the only way for you to move out of your current distress is by you taking action and insisting that your symptoms and concerns are addressed.

In your situation I would write a letter to my surgery, asking for an URGENT referral to a diabetes clinic.
I would enclose evidence of the continued high readings and list the different medications that have been tried, and what effects they did (or didn't) have.
I would also strongly emphasis the ongoing distress this causing you. The illness, weakness, etc. Say how long this ridiculous state of affairs has carried on, and that you feel your are being fobbed off with platitudes and ineffective dietary advice.

I would send copies of the letter to the doctor and the practice manager (you can get their names from the surgery website), and ask for someone to contact you urgently to discuss how long the referral will take to come through, and what the next stage should be, if you don't get a referral. Formal complaint? Self referral to whom? Should you send a copy of the enclosed evidence to the local Diabetes clinic yourself? Should you write directly to someone in the local CCG? If so, please would they provide you with the contact details with which to do so.

The surgery and CCG websites will have information on how to lodge a formal complaint, if you want to go that route.

You are not powerless in this situation.
Nor do you have to sit quietly and accept the ******* that your doc and nurse seem quite happy to give you.
Unfortunately though, all we forum members can do is to encourage you to take matters into your own hands and encourage you to ensure that you take the appropriate steps to get the treatment you need. We can only make suggestions, whereas you are the only one who can actually do anything.

 

[HSSS]

This ! ^^^^^^^^^

We cannot do this for you but we can hopefully convince you that you are being failed by your surgery. It’s hard to face up to them, especially with anxiety and feeling so terrible. But you must.

Do you have a friend or family member who can support you or advocate for you? Perhaps that you could share this thread with to illustrate how important it is that you are no longer fobbed off.

 

[MillieT]

I am not talking about getting a referral to a nutritionist.
I am suggesting that you get a referral to a diabetes clinic to see a consultant. Then you make them look at your readings and your health history and your reactions to medication.
Your doctor is failing you, and unless you take action on this you will continue to see high blood glucose readings, continue to feel dreadful, and eventually those readings will cause further ill health and diabetic complications.

I realise that your anxiety makes this all very hard for you, but the only way for you to move out of your current distress is by you taking action and insisting that your symptoms and concerns are addressed.

In your situation I would write a letter to my surgery, asking for an URGENT referral to a diabetes clinic.
I would enclose evidence of the continued high readings and list the different medications that have been tried, and what effects they did (or didn't) have.
I would also strongly emphasis the ongoing distress this causing you. The illness, weakness, etc. Say how long this ridiculous state of affairs has carried on, and that you feel your are being fobbed off with platitudes and ineffective dietary advice.

I would send copies of the letter to the doctor and the practice manager (you can get their names from the surgery website), and ask for someone to contact you urgently to discuss how long the referral will take to come through, and what the next stage should be, if you don't get a referral. Formal complaint? Self referral to whom? Should you send a copy of the enclosed evidence to the local Diabetes clinic yourself? Should you write directly to someone in the local CCG? If so, please would they provide you with the contact details with which to do so.

The surgery and CCG websites will have information on how to lodge a formal complaint, if you want to go that route.

You are not powerless in this situation.
Nor do you have to sit quietly and accept the ******* that your doc and nurse seem quite happy to give you.
Unfortunately though, all we forum members can do is to encourage you to take matters into your own hands and encourage you to ensure that you take the appropriate steps to get the treatment you need. We can only make suggestions, whereas you are the only one who can actually do anything.

The one at Kettering was the Consultant, she is not a nutritionist, I asked for the consultant at Corby and i got to see the nutritionist then. I agree with what you are saying with regards getting to see a specialist, i don't know how long it shall take for the new medication to start working, i can only do that and write and plead with them.

I realise i'm not completely powerless, some days i just honestly do not have the strength or get up and go and get things sorted, i have to take things daily one step at a time, i have said i have dreadful brain fog some days where i cannot even think of the right word to say, they just won't come out and when you're face to face with a busy doctor they treat you in a rushing manner and then you don't get to say all you wanted to, the amount of times i leave and then in the car feel like crying because i didn't get the opportunity to say everything due to time..

 

[HSSS]

when you're face to face with a busy doctor they treat you in a rushing manner and then you don't get to say all you wanted to, the amount of times i leave and then in the car feel like crying because i didn't get the opportunity to say everything due to time..

And this is where a list to tick off - literally a piece of paper in hand, a friend with you or best of all a letter that you can compose carefully with time to think it through and check come into their own.

So one letter re diabetes and a referral and another or another section demanding the uti is is addressed urgently by a gp.

the medication is hopefully going to address symptoms, not causes.

 

[MillieT]

i did take a list in when i asked for the c peptide and what have you, he asked me who told you to ask for it, i did say, friends online, he said i should not be listening to them... simple. I seem to get the same attitude from all of these all over Northants, i shall write a letter this weekend and see if it has any effect, i do need to get the Uti's sorted as is costing a fortune in creams, one doctor has said it is a side effect from when i was taking the Jardiance so is to be expected, sadly, i was only offerered 'Canesten once' and that did not even appear to touch it, there are something like 10 doctors at the surgery and countless nurses, they operate two surgeries locally, you'd think by now one would have been a little more helpful.

apologies if i am going on too much on here, i know you're all only trying to help.

 

[HSSS]

i did take a list in when i asked for the c peptide and what have you, he asked me who told you to ask for it, i did say, friends online, he said i should not be listening to them... simple. I seem to get the same attitude from all of these all over Northants, i shall write a letter this weekend and see if it has any effect, i do need to get the Uti's sorted as is costing a fortune in creams, one doctor has said it is a side effect from when i was taking the Jardiance so is to be expected, sadly, i was only offerered 'Canesten once' and that did not even appear to touch it, there are something like 10 doctors at the surgery and countless nurses, they operate two surgeries locally, you'd think by now one would have been a little more helpful.

apologies if i am going on too much on here, i know you're all only trying to help.

Considering he has no idea who those friends are ...

With regards to uti, if it is definitely thrush as opposed to other things have you tried the pessaries rather than just creams? Rather messy but much more effective than other approaches. It always used to be a 3 day course. Not sure what the recommendations are now but if you haven’t tried them I would; pretty sure you can get them over the counter. Of course it may not be thrush and may be something you need antibiotics or other treatment for.

 

[Brunneria]

Personally, I never tell health care professionals that I eat 'keto'. That is far too much like lobbing an incendiary device into their prejudices and ignorances.

Instead, with absolute honesty, I say something like 'well, I got myself a meter and started testing. It became blindingly obvious which foods were sending my blood glucose high, so I have ended up cutting down on those - which of course, are all the carb foods.'

If they want to ask questions about it, that is their choice, but so far, they have all just nodded with slightly glazed eyes, and let the subject drop.

 

[Winnie53]

Does anyone on this forum have a connection to a knowledgeable diabetes healthcare provider who would be willing to look at what's been done so far with miffli and make recommendations?

Unlike you all, I do not understand what needs to be done that has not been done yet.

I can only speculate.

I am still not clear as to whether proper testing was done to determine if she has one or more infections that need to be identified and treated.

miffli has a history of lymphoma. Could that be playing a role in her severe insulin resistance? Is she still in remission or not?

Injecting insulin did not seem to help much. WHY is that?

When you're as ill as miffli is, help is needed in clearly documenting her medical history and past and current issues BEFORE seeng another doctor. That requires access to all her medical records and spending time building a time line of what's happened each step of the way and not happened each step of the way.

Again, what is causing the severe insulin resistance? Illness? Infection? Diet? Lack of regular physical activity?

I'm flying blind. When I ask miffli questions I get partial answers, or no answer. If I'm having that problem, her medical team is too.