Worried about ketoacidosis

[Winnie53]

And there's a new problem. She is on a medication that she's been taking for high blood pressure that may be causing side effects that could be contributing to the symptoms miffli is having, specifically edema of the legs. That's another issue that has been brought to the doctors attention. Response by doctor? Medication was not stopped or changed. And now another medication has been started to begin getting miffli's glucose levels down which hopefully will be a good thing, but I don't know.

 

[MillieT]

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.

I have answered all your questions and replied here @Winnie53 i'm not sure how you say i have given partial answers

 

[Winnie53]

This thread is so busy, perhaps you're not seeing my questions. Here's two recent questions...

The morning you had the c-peptide test did you drink anything other than water? Coffee? Tea? Or something with an artificial sweetener?

Did they order the GAD antibody test for you? Do they have the result? Or are they waiting for the result?

I continue to be very concerned for you. And am trying to help, but feel like I'm failing. So long as you continue to make an effort, I will too. I'm home sick this week. That's the only reason I'm so available to you right now.

 

[Winnie53]

More questions...

Did they do any liver or kidney function tests? If it would be helpful, I can try to list those tests.

 

[MillieT]

@Winnie53 and maybe you're not reading all of mine either, It was fasting, only water passed my lips, sorry but why would i jepoardise my blood tests, i'm not stupid, i do realise what fasting means, not trying ot be abrupt but please, i say it how it is and i don't tell fibs, i.e. i wouldn't make anything up, what would be the point? I did say above somewhere , i think in response to @HSSS that there was no mention of GAD on the form but I am certain the gp said they were all normal- supposedly. it is above maybe a day or so ago, i also said that i was sure he said that but i could be mistaken because of fog and anxiety and so forth.

This is why the doctors tend to shun me because i say it how it is, i'm tired of them saying things and putting words in my mouth, i'm tired of it all for goodness sakes. They're supposed to be the professionals, also when i said above somewhere that he said not to listen to friends online i tell him it is here and he and the others respond as i have said many times that they do not recommend this site, only the dot org site and as such the recommendations by all the people on this site should be taken with a pinch of salt- this is absolute fact, they all say this to me.

to add, one even said, he went to university for 4 or 5 years to learn and where did those people online go?
make out of it what you all wish, i'm trying to get through to this lot but it seems it is a battle from start to finish, you know, how **** can you feel when you're sitting in front of a doctor and they give you that look like they're giving up on you because you're supposedly listening to stuff which, i don't know, they maybe don't understand or just don't wish to accept..

 

[MillieT]

@Winnie53

Liver Function Tests:
Albumin 43 g/l 35-50
Total Bilirubin <3 umol/L <21
ALT 49 U/L 10-60
Alkaline Photsphatase 74 U/L 30-130
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
Creatine 66 umol/L 45-84
Chloride 99 mmol/L 95-108

Creatinine and Elecetrolytes
Urea 5.3 mmol/L 2.5-7.8

 

[Winnie53]

miffli, thank you. And thanks for providing the units and ranges too. Interesting. No GGT. No lipid panel. Both of which would have been helpful in looking at your insulin resistance. I don't see any lab tests for infection or inflammation. It's going to take a while for me to look at these one by one. Thank you.

Oh, and no GAD antibody test. Looks like they didn't order it.

 

[HSSS]

@Winnie53 and maybe you're not reading all of mine either, It was fasting, only water passed my lips, sorry but why would i jepoardise my blood tests, i'm not stupid, i do realise what fasting means, not trying ot be abrupt but please, i say it how it is and i don't tell fibs, i.e. i wouldn't make anything up, what would be the point? I did say above somewhere , i think in response to @HSSS that there was no mention of GAD on the form but I am certain the gp said they were all normal- supposedly. it is above maybe a day or so ago, i also said that i was sure he said that but i could be mistaken because of fog and anxiety and so forth.

This is why the doctors tend to shun me because i say it how it is, i'm tired of them saying things and putting words in my mouth, i'm tired of it all for goodness sakes. They're supposed to be the professionals, also when i said above somewhere that he said not to listen to friends online i tell him it is here and he and the others respond as i have said many times that they do not recommend this site, only the dot org site and as such the recommendations by all the people on this site should be taken with a pinch of salt- this is absolute fact, they all say this to me.

to add, one even said, he went to university for 4 or 5 years to learn and where did those people online go?
make out of it what you all wish, i'm trying to get through to this lot but it seems it is a battle from start to finish, you know, how **** can you feel when you're sitting in front of a doctor and they give you that look like they're giving up on you because you're supposedly listening to stuff which, i don't know, they maybe don't understand or just don't wish to accept..

No one is saying you are stupid or accusing you of lying. We are seriously trying to help not make things worse . I think what @Winnie53 is trying to get across is sometimes we have had to ask a lot of questions in order to establish the facts we are trying to understand. You know what happened at the meetings but we don’t unless you tell us.

Sometimes it seems that you haven’t mentioned stuff until explicitly asked. And if that happened with a dr who is already quite frankly hostile and resistant to anything outside of his limited training in nutrition (which it is very limited unless he chose to specialise) and possibly outdated training in diabetes unless he choose to update then he might leap to conclusions - as he appears to have done. For example it seems it wasn’t clearly established if you were tested for uti or the results? I’m still unclear if you have actual results for GAD, c peptide or other antibodies or just an “it’s ok” from a dr I personally don’t trust based on your accounts.

The fact that he dismisses so easily the hundreds and probably thousands of hours people in this forum (sometimes individually, not just collectively) have spent studying medical and scientific reports in connection with diabetes whilst simultaneously having a very motivating personal interest in comparison to what probably amounts to a few 10’s of hours studying this one condition amongst hundreds he is expected to be a “general” practitioner of is to me a sign of his lack of professionalism.

I’m not surprised you are exhausted or have brain fog about it all. I would too in your shoes. this is why we are trying to help you fight your way through feeling terrible whilst having an indifferent and possibly incompetent dr. They do exist and some of them are really nice people genuinely doing their best and believing they are doing the right thing.

This is why you need to see someone else with everything collated in one place coherently in a letter sent officially to which they must respond and give credible answers point by point. How else will this situation improve?

 

[HSSS]

miffli, thank you. And thanks for providing the units and ranges too. Interesting. No GGT. No lipid panel. Both of which would have been helpful in looking at your insulin resistance. I don't see any lab tests for infection or inflammation. It's going to take a while for me to look at these one by one. Thank you.

I’ve never seen a ggt on my tests and I’ve had a few.

 

[MillieT]

I’ve never seen a ggt on my tests and I’ve had a few.

I think this is a partial problem because I don't think we have the precise same tests over here as to those that are in the US

 

[MillieT]

No one is saying you are stupid or accusing you of lying. We are seriously trying to help not make things worse . I think what @Winnie53 is trying to get across is sometimes we have had to ask a lot of questions in order to establish the facts we are trying to understand. You know what happened at the meetings but we don’t unless you tell us.

Sometimes it seems that you haven’t mentioned stuff until explicitly asked. And if that happened with a dr who is already quite frankly hostile and resistant to anything outside of his limited training in nutrition (which it is very limited unless he chose to specialise) and possibly outdated training in diabetes unless he choose to update then he might leap to conclusions - as he appears to have done. For example it seems it wasn’t clearly established if you were tested for uti or the results? I’m still unclear if you have actual results for GAD, c peptide or other antibodies or just an “it’s ok” from a dr I personally don’t trust based on your accounts.

The fact that he dismisses so easily the hundreds and probably thousands of hours people in this forum (sometimes individually, not just collectively) have spent studying medical and scientific reports in connection with diabetes whilst simultaneously having a very motivating personal interest in comparison to what probably amounts to a few 10’s of hours studying this one condition amongst hundreds he is expected to be a “general” practitioner of is to me a sign of his lack of professionalism.

I’m not surprised you are exhausted or have brain fog about it all. I would too in your shoes. this is why we are trying to help you fight your way through feeling terrible whilst having an indifferent and possibly incompetent dr. They do exist and some of them are really nice people genuinely doing their best and believing they are doing the right thing.

This is why you need to see someone else with everything collated in one place coherently in a letter sent officially to which they must respond and give credible answers point by point. How else will this situation improve?

hi @HSSS
Has one of my threads disappeared from view somehow because I did reply the other day and clearly stated regards the C Peptide tests and also mentioned GAD, i have no idea why nobody seems to be seeing it but it is definitely just there.

I did say i was trying not being abrupt but I do understand what fasting means and feel intimidated sometimes when asked for specifics because why would i do anything else. I don't understand that i'm not adding enough information somewhow because what i give is what i get from, i may have trouble explaining it all because this is the brain fog i talk about and have had since finishing the radiotherapy, please understand everyone, i had it on my head and i think it done something untoward..

look, sometimes i has a response of answer in my head, i can't reply, it is almost like being mortified and being pushed in a corner, i am asking to make some allowances for me please, i was reasonably intelligent once, i think it is like having a massive knock on the head and having amnesia of sorts, i don't know but i honestly cannot help it.

no, i don't trust just an It's ok from the doctor but i most certainly did ask what you all said, for C peptide and GAD tests though like i keep saying, there is nothing on this print out that mentiones the letters GAD. I have written everything down off the form on to this thread word for word, there is nothing else on it and i'm not hiding anything, honestly.

It is not just him, this was the response from the head of the team at Kettering diabetic clinic and other nurses and diabetic professionals..

 

[Winnie53]

The US doesn't do the GGT either. I thought the GGT was regularly used in England. Dr. David Unwin definately uses it. It's a great test to track improvements with fatty liver while following the low carb/keto diet. My husband and I paid cash to have that test done.

 

[HSSS]

hi @HSSS
Has one of my threads disappeared from view somehow because I did reply the other day and clearly stated regards the C Peptide tests and also mentioned GAD, i have no idea why nobody seems to be seeing it but it is definitely just there.

I did say i was trying not being abrupt but I do understand what fasting means and feel intimidated sometimes when asked for specifics because why would i do anything else. I don't understand that i'm not adding enough information somewhow because what i give is what i get from, i may have trouble explaining it all because this is the brain fog i talk about and have had since finishing the radiotherapy, please understand everyone, i had it on my head and i think it done something untoward..

look, sometimes i has a response of answer in my head, i can't reply, it is almost like being mortified and being pushed in a corner, i am asking to make some allowances for me please, i was reasonably intelligent once, i think it is like having a massive knock on the head and having amnesia of sorts, i don't know but i honestly cannot help it.

no, i don't trust just an It's ok from the doctor but i most certainly did ask what you all said, for C peptide and GAD tests though like i keep saying, there is nothing on this print out that mentiones the letters GAD. I have written everything down off the form on to this thread word for word, there is nothing else on it and i'm not hiding anything, honestly.

It is not just him, this was the response from the head of the team at Kettering diabetic clinic and other nurses and diabetic professionals..

you haven’t done wrong and we aren’t saying you have. Please don’t stress further about it. We understand you are under a lot of pressure whilst feeling rubbish. And I’m sure high bgl aren’t helping. And sometimes it all feels like it’s coming at you from every direction no matter what the intentions. But it’s not!
It’s not just about the fasting issue and I suspect there’s some misunderstanding happening. We all feel we are being clear and apparently we’re not. And this occurs between patient and dr frequently too.

Keep pushing to go back to a specialist. Have it all written down and reviewed with ALL your symptoms, problems and issues even if it seems a bit of a stretch to connect them. If there are no friends to advocate for you is there a service at your hospital that provides this? Or try diabetes.org (the blue site). They might have someone locally who can help.

 

[Winnie53]

miffli, I think you're smart. I mean it. Your wouldn't have found and begun participating on this forum if you were dumb. That said, when taking on the medical profession, we have to think strategically and proactively. Not easy for me, but when I really take the time needed, make an effort, and reach out to others for consultations along the way, I usually get results.

 

[MillieT]

I just noticed I have actually now lost slightly over 3/4 of a stone- that's 46 pounds if i'm right. wow, that's rather pleasing, my my wake up sugars are on 17.3 and it's my third day on the Alogliptin, i was hoping they would start kicking in and see if they do anything.

 

[MillieT]

you haven’t done wrong and we aren’t saying you have. Please don’t stress further about it. We understand you are under a lot of pressure whilst feeling rubbish. And I’m sure high bgl aren’t helping. And sometimes it all feels like it’s coming at you from every direction no matter what the intentions. But it’s not!
It’s not just about the fasting issue and I suspect there’s some misunderstanding happening. We all feel we are being clear and apparently we’re not. And this occurs between patient and dr frequently too.

Keep pushing to go back to a specialist. Have it all written down and reviewed with ALL your symptoms, problems and issues even if it seems a bit of a stretch to connect them. If there are no friends to advocate for you is there a service at your hospital that provides this? Or try diabetes.org (the blue site). They might have someone locally who can help.

I'm in hospital Tuesday for blood screening, i think it may be my last, they said to go in every quarter post treatment but the consultant said to keep going so maybe they know something that i don't? i have been in remission since so am hoping it shall stay the same, having said that i'm not sure whether it is a full blood count or what and it isn't a fasting one, they do take a few samples. Then dentist appointment and also am asking to see an endicrinologist.

 

[Brunneria]

I'm in hospital Tuesday for blood screening, i think it may be my last, they said to go in every quarter post treatment but the consultant said to keep going so maybe they know something that i don't? i have been in remission since so am hoping it shall stay the same, having said that i'm not sure whether it is a full blood count or what and it isn't a fasting one, they do take a few samples. Then dentist appointment and also am asking to see an endicrinologist.

maybe when you are there, ask what the usual protocol is for follow up tests. I have known a number of people unfortunate enough to go through cancer, and they seem to have frequent tests to check they are in remission for the first year or two, then the longer they are in remission, the less frequent the tests become, but they DO keep checking. You won’t be spat out with no followups at all.

Hope it all goes smoothly for you, and that you get the referral you need.

 

[MillieT]

maybe when you are there, ask what the usual protocol is for follow up tests. I have known a number of people unfortunate enough to go through cancer, and they seem to have frequent tests to check they are in remission for the first year or two, then the longer they are in remission, the less frequent the tests become, but they DO keep checking. You won’t be spat out with no followups at all.

Hope it all goes smoothly for you, and that you get the referral you need.

I didn't realise, i thought it was only a year so that's useful information, Thank you. x

 

[Brunneria]

I didn't realise, i thought it was only a year so that's useful information, Thank you. x

i think it must vary depending on the type of cancer, the odds of it recurring, and personal medical history.
Maybe, before you leave this next appt, try to make sure you know when they next want to see you. I always feel better when I know what is going on!

 

[MillieT]

it does run in the family unfortunately, same as diabetes, they did ask last time to come in in 3 months and i did say i thought i had finished, the consultant did reply he'd like to keep an eye on me just to make sure, but i did however think this was going to be my last so perhaps not at all. I'd sooner know before i leave so i can tick it off in my diary, even if it is 3 month ahead. I was told when i finished treatment that i would have to come in for one year, the same as they told me the effects of radiotherapy would be out of my system in 4-6 weeks.. and that is a bit of a false claim too.