Emergency admission to hospital

[LionChild]

I was diagnosed with Type 2 Diabetes about a year ago, and had been religiously following advised diet, and exercising 30 mins a day on my exerciser. I started taking the probiotic which I was harvesting called Kefir, and quickly lost weight. But at the same time, I had a cold which turned into bronchitis. Over the past number of months my Hb1Ac went up from 51 to 52 to 57 to......wait for it: 119! I did post on here a week or two ago about this. I went to see my GP and took a urine sample. She immediately said I needed to go on Metformin (been trying to reverse DT2 without medication), then I gave urine sample. She tested for Ketones, and in shock, announced they were 3+ and I must go straight into hospital. Went in on drips of potassium and sodium and insulin for several days, then discharged with a new diagnosis of Type 1 Diabetes. I was told this was genetic and I had not got type 2 at all at any point. Misdiagnosis then.
My discharge letter said the diagnosis was 'Diabetic Ketoacidosis' which I understand to be potentially fatal. But as it happened it was managed 'well with no complications'.
I think I have 3 areas that need clarity.
1. The Hb1Ac covers about 3 months, but for around 3 weeks of the latter time (which I understand is a weighted average of HB measurement) , I had a cold, followed by bronchitis, and I wonder if the blood result of 119 might have been unduly affected by that illness & therefore a skewed result.
2. the 3+ ketones that I passed through urine ---is that a usual or abnormal thing given that my diet was one which had only minimal carbs. Isnt that was the ketone diet is all about?
3. The consultant did not test for insulin levels (i.e. C-Peptide, antibodies) prior to giving me insulin, and on discharge was given 30 units twice a day (which as it turns out was far too much since my blood glucose keeps going extremely low at 3.2 before bed time, and we have had to adjust down down down to now, 20 units twice a day.
4. Could I try the proper Ketone diet to enable a reduction of insulin. Of course I do not yet know if I am producing any at all..? How safe would it be - given that I am being advised by the District Nurse(s) to stuff myself constantly with carbs when a hypo is threatened (which happens quite a lot).....and getting , as a result, fatter and fatter. These hypos are largely the result of too much INSULIN and were not a big problem before my admission to hospital?
Thank you, anyone who can help me make sense of all this....

 

[JAT1]

I am not an expert at all. I can only tell you what I have learned from my experience. I too am Type1 since last summer and was initially misdiagnosed as Type 2.
The cold and bronchitis likely did skew your Hba1c but by how much I wouldn't know. I do know that sickness does affect your blood sugar.
The key to Type 1 is taking the correct amount of insulin for the amount of carbs you eat. Are you taking a fast-acting insulin before meals and a long-lasting insulin once a day? Do you count carbs?
About the ketones, I wouldn't know, but many Type 1s follow a very low carb and keep the amount of insulin they require low. Dr. Bernstein is the inspiration for that and explains it all very well on youtube.
How often do you test your blood sugar? (Sorry for all the questions, it's just to clarify.) The thing about having a hypo is that you want to take enough carb to increase your sugar count but not to stuff yourself and then go way too high. For me, just one carrot, well chewed, is enough with a glass of water.

 

[JAT1]

I meant to say "a very low carb diet". I left out the word "diet". oops

 

[EllieM]

1. The Hb1Ac covers about 3 months, but for around 3 weeks of the latter time (which I understand is a weighted average of HB measurement) , I had a cold, followed by bronchitis, and I wonder if the blood result of 119 might have been unduly affected by that illness & therefore a skewed result.

119 is an average blood sugar of over 18mmol/L so even if your result was skewed by illness then you've been running very very high blood sugars on diet alone. I guess you know how low carb you were going, so will know the likelihood of achieving lower results by going even lower carb.

The consultant did not test for insulin levels (i.e. C-Peptide, antibodies) prior to giving me insulin, and on discharge was given 30 units twice a day (which as it turns out was far too much since my blood glucose keeps going extremely low at 3.2 before bed time, and we have had to adjust down down down to now, 20 units twice a day.

That's still quite a lot of insulin, particularly if you're not having a lot of carbs. You should be able to adjust your insulin intake to match your carb intake - if you're going keto it may well be you end up on significantly less insulin than now. You need to keep contact with your team as they help you adjust your insulin down. (Bear in mind that some people need much more insulin than others for the same amount of food, so "a lot" of insulin for one person is not for another).

Could I try the proper Ketone diet to enable a reduction of insulin. Of course I do not yet know if I am producing any at all..? How safe would it be - given that I am being advised by the District Nurse(s) to stuff myself constantly with carbs when a hypo is threatened (which happens quite a lot).....and getting , as a result, fatter and fatter. These hypos are largely the result of too much INSULIN and were not a big problem before my admission to hospital?

I would expect so, there are plenty of T1s who go keto. But you need to do it under supervision, you can't just stop taking insulin and hope things will be OK. The fact that you were on a drip for several days suggests that you were lucky to survive that DKA, you don't want to repeat it, ever. (There is absolutely no need for a T1 to get DKA if they monitor their blood sugars, ketones and continue to take insulin.) Undiagnosed T1s regularly die of DKA: insufficient insulin makes ketone levels in the blood go up and up and your blood becomes acidic.

If you want to go keto I would talk to your nurse (or maybe someone on here knows) on how to differentiate between ketones in urine because of DKA or because of dietary ketosis. (I suspect you may need to invest in a ketone testing blood reader, but I'm sure there are low carb T1s on here who can advise). It may be enough to check that your blood sugars are normal when you have ketones in your urine.

 

[MeiChanski]

I was diagnosed with Type 2 Diabetes about a year ago, and had been religiously following advised diet, and exercising 30 mins a day on my exerciser. I started taking the probiotic which I was harvesting called Kefir, and quickly lost weight. But at the same time, I had a cold which turned into bronchitis. Over the past number of months my Hb1Ac went up from 51 to 52 to 57 to......wait for it: 119! I did post on here a week or two ago about this. I went to see my GP and took a urine sample. She immediately said I needed to go on Metformin (been trying to reverse DT2 without medication), then I gave urine sample. She tested for Ketones, and in shock, announced they were 3+ and I must go straight into hospital. Went in on drips of potassium and sodium and insulin for several days, then discharged with a new diagnosis of Type 1 Diabetes. I was told this was genetic and I had not got type 2 at all at any point. Misdiagnosis then.
My discharge letter said the diagnosis was 'Diabetic Ketoacidosis' which I understand to be potentially fatal. But as it happened it was managed 'well with no complications'.
I think I have 3 areas that need clarity.
1. The Hb1Ac covers about 3 months, but for around 3 weeks of the latter time (which I understand is a weighted average of HB measurement) , I had a cold, followed by bronchitis, and I wonder if the blood result of 119 might have been unduly affected by that illness & therefore a skewed result.
2. the 3+ ketones that I passed through urine ---is that a usual or abnormal thing given that my diet was one which had only minimal carbs. Isnt that was the ketone diet is all about?
3. The consultant did not test for insulin levels (i.e. C-Peptide, antibodies) prior to giving me insulin, and on discharge was given 30 units twice a day (which as it turns out was far too much since my blood glucose keeps going extremely low at 3.2 before bed time, and we have had to adjust down down down to now, 20 units twice a day.
4. Could I try the proper Ketone diet to enable a reduction of insulin. Of course I do not yet know if I am producing any at all..? How safe would it be - given that I am being advised by the District Nurse(s) to stuff myself constantly with carbs when a hypo is threatened (which happens quite a lot).....and getting , as a result, fatter and fatter. These hypos are largely the result of too much INSULIN and were not a big problem before my admission to hospital?
Thank you, anyone who can help me make sense of all this....

I, personally would find it quite risky and from past experience, I wouldn't give DKA another round. I'd suggest in getting contact with your diabetes team for advice, possibly get yourself on a carb counting course such as DAFNE. So you can adjust your insulin for the amount of carbs you eat and I know a lot of people have been successful and managed to shred weight and maintain it too. When you learn to adjust your insulin, hypos will be less frequent and your diabetes is more manageable. This also questions the insulin regime you're on, what insulin are you taking?

 

[kokhongw]

It would still be helpful to get C-peptide and GAD results in order to make more informed decisions...

 

[michita]

Hi LionChild

2), I had a similar experience with my diagnosis 3 yeas ago. I was tested positive for ketones together with high bs level (hba1c above 100 and ketones around 3-5) and advised to go to A&E. I had all sorts of diabetes symptoms but I wasn’t ill. Discharged late on the day and was told to come back next day for more tests. What I was told at A&E was I had high ketones but my blood wasn’t acidic meaning i didn’t have DKA. So having high bs and ketones don’t always mean you have DKA, I think it’s the blood’s ph level that matters.

3). If I were you I would definitely ask for c peptide and antibody tests. Why not, they are the tests used to diagnose type 1, a bit unusual not have them done.

 

[LionChild]

I, personally would find it quite risky and from past experience, I wouldn't give DKA another round. I'd suggest in getting contact with your diabetes team for advice, possibly get yourself on a carb counting course such as DAFNE. So you can adjust your insulin for the amount of carbs you eat and I know a lot of people have been successful and managed to shred weight and maintain it too. When you learn to adjust your insulin, hypos will be less frequent and your diabetes is more manageable. This also questions the insulin regime you're on, what insulin are you taking?

hi MeiChanski, thank you for your response. I am on Novomix 30 Flex Pen. My BMI was 25.3 BEFORE this event, but now from 11stone 4, because of all the carbs to control the hypos, I am around 12 stone, which is very annoying! The kefir seemed to help me lose weight.....Now the insulin has been reduced to 20 units twice daily, the hypos are much less frequent, and my blood glucose results have gone up a bit. This morning 8.8 (which I think due to eating piece of malt loaf and other stuff before sleep because I am afraid of going too low. Once was 3.2 pre breakfast, and 3.7 once pre bed....I dont want to die in my sleep!? But then I was on 26 in morning and 24 in evening, having reduced from 30 twice a day. Average results have gone up and are better now. But I still wonder whether the insulin level is a bit too high and whether in fact wonder what the Ph level actually means in relation to DKA and high HBA1c. What is definitive of Diabetes 1? I am expecting to have C peptide done and antibodies test but not till my appoitnment on 16th May.
Thank you so much for your comment.

 

[LionChild]

I, personally would find it quite risky and from past experience, I wouldn't give DKA another round. I'd suggest in getting contact with your diabetes team for advice, possibly get yourself on a carb counting course such as DAFNE. So you can adjust your insulin for the amount of carbs you eat and I know a lot of people have been successful and managed to shred weight and maintain it too. When you learn to adjust your insulin, hypos will be less frequent and your diabetes is more manageable. This also questions the insulin regime you're on, what insulin are you taking?

Hi LionChild

2), I had a similar experience with my diagnosis 3 yeas ago. I was tested positive for ketones together with high bs level (hba1c above 100 and ketones around 3-5) and advised to go to A&E. I had all sorts of diabetes symptoms but I wasn’t ill. Discharged late on the day and was told to come back next day for more tests. What I was told at A&E was I had high ketones but my blood wasn’t acidic meaning i didn’t have DKA. So having high bs and ketones don’t always mean you have DKA, I think it’s the blood’s ph level that matters.

3). If I were you I would definitely ask for c peptide and antibody tests. Why not, they are the tests used to diagnose type 1, a bit unusual not have them done.

Hi

Hi LionChild

2), I had a similar experience with my diagnosis 3 yeas ago. I was tested positive for ketones together with high bs level (hba1c above 100 and ketones around 3-5) and advised to go to A&E. I had all sorts of diabetes symptoms but I wasn’t ill. Discharged late on the day and was told to come back next day for more tests. What I was told at A&E was I had high ketones but my blood wasn’t acidic meaning i didn’t have DKA. So having high bs and ketones don’t always mean you have DKA, I think it’s the blood’s ph level that matters.



3). If I were you I would definitely ask for c peptide and antibody tests. Why not, they are the tests used to diagnose type 1, a bit unusual not have them done.

Hi Michita, thank you for your comments. That is interesting what you say about the ph level mattering more. so would you say it is possible that I did not have DKA? Since I was on kefir there may well have been side effects, but I cannot say I felt terribly ill when the GP sent me directly to CDU, in fact by passing even A & E.... Of course the 119 was a serious score for Hb1aC, and I cannot deny that, and I did excrete 3+ ketones, and I did not feel Great. But... There seems to me an element of doubt, since the c peptide and antibodies tests were not done for some reason. Good question: why not. Since we did ask that the blood that was still in the lab could have been used for that follow up test...from the A1c test? But the consultant, despite appearing to agree to see if that could be done, didn't. So now I have to wait until my appointment as I say.

 

[LionChild]

It would still be helpful to get C-peptide and GAD results in order to make more informed decisions...

It seems I had far too much insulin pumped into me at the outset of diagnosis when I was in intensive care. This caused so many hypos on discharge, I have had no option at this time but to seek to control high blood glucose with carbs, and reduce down the insulin. Diabetic District nurses now reducing contact, and gp surgery feels insufficient to manage this with me. All a bit overwhelming, and I so desperately want to be able to work this out somehow. I will continue to seek answer to help me understand what is going on, but there seem to be so many contradictory messages and difficult to understand science here! I am really wanting to grasp this nettle but its hard work!
Thank you so much for your help.

 

[Circuspony]

@LionChild Don't use the fact that you didn't feel ill with your high hba1c to assume it was wrong. Your body gets used to running on high sugar, it uses up your fat reserves for energy and -although you lose weight and get thirsty - it's pretty normal to feel ok. My hba1c was 147 and I felt absolutely fine!

You will put weight on because your body was using your fat reserves and now it has access to insulin it will start to lay down fat again. Its very annoying but right now you need to concentrate on stable BG levels and not how many KG you weigh.

Are you in the UK? Have they recommended a carb counting course?

 

[michita]

Hi


Hi Michita, thank you for your comments. That is interesting what you say about the ph level mattering more. so would you say it is possible that I did not have DKA? Since I was on kefir there may well have been side effects, but I cannot say I felt terribly ill when the GP sent me directly to CDU, in fact by passing even A & E.... Of course the 119 was a serious score for Hb1aC, and I cannot deny that, and I did excrete 3+ ketones, and I did not feel Great. But... There seems to me an element of doubt, since the c peptide and antibodies tests were not done for some reason. Good question: why not. Since we did ask that the blood that was still in the lab could have been used for that follow up test...from the A1c test? But the consultant, despite appearing to agree to see if that could be done, didn't. So now I have to wait until my appointment as I say.

I think you must have had DKA because the hospital kept you for a few days and your discharge letter says so. But you could ask them when you see them again. I thought with DKA ketones are a lot higher than 3. It seems people with type 2 can also have DKA although it’s rare, so you should have the tests to confirm type 1, they cannot possibly deny the tests when you are feeling doubtful...? I hope you feel better in time. I think it’s very normal to feel confused and overwhelmed in the beginning

 

[JMK1954]

Well, you know you were on too much insulin to atart with because of the hypos and it is perfectly possible that you may need to reduce it further, if hypos continue to occur. Do your consultant and nurses realise that you have been used to eating a low carb diet ? This in itself will reduce the amount of insulin that your body requires. It can only help if you can start to note exactly what you are eating including the carbs and when, a food diary to put it another way. You can show this to whoever is giving you advice about the amount of insulin to take and it should help them to arrive at a better understanding of how much insulin to suggest. Insulin requirements also vary massively from one individual to another unfortunately, with some trial and error necessary to arrive at a correct number of units for any of us.

All of this must be both frustrating and difficult for you, but at least you are still here. Being days on a drip does suggest you were in real danger when you were admitted to hospital. Are you able to send your blood test results to anyone to review and offer further advice on hypos and adjusting your insulin ? GP surgeries are unlikely to be helpful with this sort of thing. It's outside their area of expertise so it's not just yours being awkward. I agree that getting levels more stable is your first priority. Carb counting would help with this.

 

[Pinkorchid]

As TMK1954 said did your medical team know you were on a low carb diet ? they do need to know now as you have been diagnosed T1 and are on insulin

 

[Deleted Account]

@LionChild it is possible you were losing weight due to your high BG rather than the keffir that you were eating.
You mention you were being treated by the district nurse but now being passed back to your GP. I would strongly recommend insisting on being seen by a dedicated diabetes team as most people with type 1 do.
A dedicated diabetes team is likely to move you off fixed insulin doses. These may have been popular 20 years ago but for the last 15 years, at least, the "basal-bolus" regime has been usual for people with type 1 diabetes as this allows you to adjust your insulin dose according to what you eat rather than having to eat to maintain your BG.
This will mean more injections (every time you eat plus one more) but the flexibility and control is much much better.

Good luck in your continued diabetes journey. There are many of us around (not as many as there is with type 2 but still plenty to assist) to ask questions.

 

[LionChild]

@LionChild Don't use the fact that you didn't feel ill with your high hba1c to assume it was wrong. Your body gets used to running on high sugar, it uses up your fat reserves for energy and -although you lose weight and get thirsty - it's pretty normal to feel ok. My hba1c was 147 and I felt absolutely fine!

You will put weight on because your body was using your fat reserves and now it has access to insulin it will start to lay down fat again. Its very annoying but right now you need to concentrate on stable BG levels and not how many KG you weigh.

Are you in the UK? Have they recommended a carb counting course?

Yes, thanks, I agree I must right now focus on the BG levels and not get too concerned about weight gain, but it seems that not enough attention is given to adjusting insulin levels until we pressed in that direction, and far too much focus on just eating more carbs in meals and snacks to halt the hypos. I dont mind putting on a bit of weight, but my fear is my weight will sky rocket if this way of dealing with the hypos is emphasized. I have put on about 11 lbs since coming out of hospital on Monday 15th, to make me 12, and that's okay, but there must be a limit methinks? My BMI was 25.3 - it is obviously moving up that scale now...

 

[LionChild]

@LionChild Don't use the fact that you didn't feel ill with your high hba1c to assume it was wrong. Your body gets used to running on high sugar, it uses up your fat reserves for energy and -although you lose weight and get thirsty - it's pretty normal to feel ok. My hba1c was 147 and I felt absolutely fine!

You will put weight on because your body was using your fat reserves and now it has access to insulin it will start to lay down fat again. Its very annoying but right now you need to concentrate on stable BG levels and not how many KG you weigh.

Are you in the UK? Have they recommended a carb counting course?

Yes, I am in the UK, and no they have not referred to this yet, but I will be looking into it, and some kind of support group locally too for DT1. Thank you for your response.

 

[LionChild]

I think you must have had DKA because the hospital kept you for a few days and your discharge letter says so. But you could ask them when you see them again. I thought with DKA ketones are a lot higher than 3. It seems people with type 2 can also have DKA although it’s rare, so you should have the tests to confirm type 1, they cannot possibly deny the tests when you are feeling doubtful...? I hope you feel better in time. I think it’s very normal to feel confused and overwhelmed in the beginning

Yes, I presume I have had DKA as you say, the letter says so. At least it says "Treated on arrival AS DKA." which I suppose is saying the same thing, and not implying there might be doubt....I tend to read between the lines of things, and the actual language used....Probably I am far too precise! But another way of putting this, if the doc was very clear on what was wrong with me, might have said "On arrival it was found that she had DKA" rather than 'treated...AS DKA. I am splitting words maybe?!

 

[LionChild]

@LionChild it is possible you were losing weight due to your high BG rather than the keffir that you were eating.
You mention you were being treated by the district nurse but now being passed back to your GP. I would strongly recommend insisting on being seen by a dedicated diabetes team as most people with type 1 do.
A dedicated diabetes team is likely to move you off fixed insulin doses. These may have been popular 20 years ago but for the last 15 years, at least, the "basal-bolus" regime has been usual for people with type 1 diabetes as this allows you to adjust your insulin dose according to what you eat rather than having to eat to maintain your BG.
This will mean more injections (every time you eat plus one more) but the flexibility and control is much much better.

Good luck in your continued diabetes journey. There are many of us around (not as many as there is with type 2 but still plenty to assist) to ask questions.

Thank you very much HelenSaraMay! I will look into this 'basal-bolus' thing. At the moment it is a 'mix' which means I think that though it is fixed, there is long term underlying amount of insulin, with some other amount running along, as it were, on top, if that makes sense?
I do have an appointment at the Queen Elizabeth Hospital here in Birmingham, UK on 16th May at the Diabetic centre, so I presume that equates to my 'Diabetic Team'? And they will be the people to seek advice and support from. At that appointment I understand they will do this c peptide and anti body test which I thought they should have done initially to establish how much endogenous insulin I already had before deciding on the dosage of exogenous stuff. But hey what do I know about this subject? Not a lot ----yet?

 

[LionChild]

As TMK1954 said did your medical team know you were on a low carb diet ? they do need to know now as you have been diagnosed T1 and are on insulin

No, I am not sure that fully registered with them. I had done the X-pert Diabetes 2 course (which diagnosis they at that time had given me), which is run by the NHS ( a six weekly course) and learnt that carbs should be kept down. I probably kept them down more than I needed to, and also started having this kefir probiotic which I harvested myself, getting the grains from E-bay. I thought the weight loss was due to the kefir itself as that is said to be one of the benefits. But it seems like other things were going on relating to the development of DT1.