# newly diagnosed - type 3c?



## angelaofthenorth (Sep 27, 2022)

everydayupsanddowns said:


> Welcome to the forum @smartie
> 
> Sorry to hear about your diagnosis, and the slightly befuddled way some of it was handled.
> 
> ...


Hi Everyone I am newly diagnosed also.  Was having continual bouts of thrush terrible rashes, my dermatologist was baffled until they did a urine test after 12 months.  Blood sugar through the roof, did blood test and and just got results of AC1 test - 115.  So thats pretty conclusive.
Not had my first appointment about this with my doctor yet, only got blood results today.  I'm in shock and scared.  Ive managed to overcome addiction to alcohol and now i will have to give up more things that I enjoy


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## Leadinglights (Sep 27, 2022)

angelaofthenorth said:


> Hi Everyone I am newly diagnosed also.  Was having continual bouts of thrush terrible rashes, my dermatologist was baffled until they did a urine test after 12 months.  Blood sugar through the roof, did blood test and and just got results of AC1 test - 115.  So thats pretty conclusive.
> Not had my first appointment about this with my doctor yet, only got blood results today.  I'm in shock and scared.  Ive managed to overcome addiction to alcohol and now i will have to give up more things that I enjoy


Welcome, diagnosis is often a shock but sometimes a relief that you have an explanation for your symptoms. Thrush is often a signal that your glucose level is high as when it reaches the level you have your urine is 'sugary' and the yeast that causes thrush just love that environment.
You may have to cut out some of the things you like but there is plenty you can still have as it is carbohydrates that need to be reduced and they can be replaced with tasty protein and healthy fats. But that does not mean that you cannot have any carbs just a reduced amount that your body is still able to tolerate. 
This link may help you find a way of modifying your diet whilst still having normal foods. https://lowcarbfreshwell.co.uk/
I expect with such a high HbA1C you will be put on some medication, the first thing is normally metformin, which is usually started at a low dose and increased over a few weeks so your body can better tolerate it as it is renowned for causing stomach issues in some people. Taking with food will help.
The Learning Zone here is also a good source of information. Do ask any questions you have.


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## everydayupsanddowns (Sep 29, 2022)

Welcome to the forum @angelaofthenorth (great username!)

Well done on beating the demon drink - that shows real willpower and stickability. 

Sorry to hear about your diagnosis with T2. 

Diabetes is a potentially serious condition, but it’s also one that can usually be managed well with a few changes and adaptations - it’s something that you can learn to live well with, and it shouldn’t stop you doing things you enjoy. Try not to be disheartened about your diagnosis, many people on the forum later reflect that their diagnosis became a kind of catalyst which prompted them to make positive changes towards a healthier and more active life. Perhaps changes that they had been intending to make for years.


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## angelaofthenorth (Oct 12, 2022)

HI All
Thanks for the replies @everydayupsanddowns and @Leadinglights.  I haven't actually been diagnosed with Type 2, it was my dermatologist who discovered ridiculously high levels.  He has referred me to my GP so waiting for that.  I've bought a blood glucose monitor and just got my first reading and its 21.6!!  I'm starting to think this may be type 3 because I have had pancreatitis in the past twice, although that was over 7 years ago.


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## Leadinglights (Oct 12, 2022)

angelaofthenorth said:


> HI All
> Thanks for the replies @everydayupsanddowns and @Leadinglights.  I haven't actually been diagnosed with Type 2, it was my dermatologist who discovered ridiculously high levels.  He has referred me to my GP so waiting for that.  I've bought a blood glucose monitor and just got my first reading and its 21.6!!  I'm starting to think this may be type 3 because I have had pancreatitis in the past twice, although that was over 7 years ago.


@angelaofthenorth . Do you have a means of testing for ketones, a urine dip sticks can be bought from the pharmacy as that is a very high glucose reading. 
I would advise you should contact your GP asap and report that high level.


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## rebrascora (Oct 12, 2022)

angelaofthenorth said:


> HI All
> Thanks for the replies @everydayupsanddowns and @Leadinglights.  I haven't actually been diagnosed with Type 2, it was my dermatologist who discovered ridiculously high levels.  He has referred me to my GP so waiting for that.  I've bought a blood glucose monitor and just got my first reading and its 21.6!!  I'm starting to think this may be type 3 because I have had pancreatitis in the past twice, although that was over 7 years ago.



I think you need to ring your GP surgery and make an appointment pronto with levels that high. The referral from the dermatologist might get lost or someone not pick up on the necessity to contact you. Unfortunately, with the NHS being in crisis these days, you need to be quite proactive to get prompt and appropriate treatment. Please make an appointment ASAP and get the ball rolling.


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## angelaofthenorth (Oct 12, 2022)

So is that reading very high even for people with diabetes?


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## Proud to be erratic (Oct 12, 2022)

angelaofthenorth said:


> So is that reading very high even for people with diabetes?


Yes.


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## angelaofthenorth (Oct 12, 2022)

Proud to be erratic said:


> Yes.


Hi I notice you have type 3c diabetes presumably because of your pancreatectomy - do think that could be me because people are saying its too high even for type 2.  I have had pancreas problems


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## rebrascora (Oct 12, 2022)

angelaofthenorth said:


> So is that reading very high even for people with diabetes?


Yes. It isn't a "Go straight to A&E, do not pass GO" sort of reading ie a reading in the 30s but it is definitely a reading that needs fairly prompt attention and a plan of action to start bringing it down.


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## Proud to be erratic (Oct 12, 2022)

angelaofthenorth said:


> So is that reading very high even for people with diabetes?


Apologies, I should have said welcome and well done for joining dots and musing whether you could be T3c. Pancreatitis can and does damage the pancreas' insulin production capacity and thus the categorisation of T3c. 

Diabetic ketoacidosis (DKA) is a very real risk from excessively elevated BG and I echo other comments, seek help promptly.


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## angelaofthenorth (Oct 12, 2022)

im a bit overweight but nothing bad and have been losing weight


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## rebrascora (Oct 12, 2022)

angelaofthenorth said:


> im a bit overweight but nothing bad and have been losing weight


Being a bit overweight can cloud the issue because doctors and nurses tend to assess diabetes based on clinical factors and excess weight (even just a little and lets face it, most of us are carrying some excess) and/or more mature age are indicators of Type 2, so it is an easy assumption to make and most primary care clinicians have not even heard of Type 3c Diabetes so would not even think of it.
Weight loss can be a bit of a concern particularly if it is happening quickly or a bit too easily because it can indicate that your body is going into ketosis where it burns fat instead of carbs. The reason it does this may be because it can't produce enough insulin to use the glucose in your blood for energy, so the body starts to live off it's own reserves. It would be wise to get some Ketostix and test your urine for ketones to keep yourself safe with BG levels persistently above mid teens.. They can be purchased over the counter at pharmacies for about £5.


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## angelaofthenorth (Oct 12, 2022)

rebrascora said:


> The being overweight can cloud the issue because doctors and nurses tend to assess diabetes bases on clinical factors and excess weight and or more mature age are indicators of Type 2, so it is an easy assumption to make and most primary care clinicians have not even heard of Type 3c Diabetes so would not even think of it.
> Weight loss can be a bit of a concern particularly if it is happening quickly or a bit too easily because it can indicate that your body is going into ketosis where it burns fat instead of carbs. The reason it does this may be because it can't produce enough insulin to use the glucose in your blood for energy, so the body starts to live off it's own reserves. It would be wise to get some Ketostix and test your urine for ketones to keep yourself safe with BG levels persistently above mid teens.. They can be purchased over the counter at pharmacies for about £5.


Thanks so much.  Why is ketosis what people aim for in those diets then? if its so dangerous?


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## angelaofthenorth (Oct 12, 2022)

does anyone know how to change my 'Relationship to Diabetes' status?  Just I assumed I must be Type 2 because thought that people who have type 1 have it from birth.


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## rebrascora (Oct 12, 2022)

angelaofthenorth said:


> Thanks so much.  Why is ketosis what people aim for in those diets then? if its so dangerous?


Ketosis is fine if you are able to produce enough insulin to keep your BG levels low. It is the combination of high BG and ketosis which is dangerous because the high BG causes the blood to become a bit acidic and this results in a toxic combination with the ketones. This is why it is called Diabetic Keto*Acid*osis.... usually shortened to DKA and can put people in a coma and cause organ damage in severe cases even death. Testing for ketones is therefore important when BG levels are high.


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## Proud to be erratic (Oct 12, 2022)

angelaofthenorth said:


> Hi I notice you have type 3c diabetes presumably because of your pancreatectomy - do think that could be me because people are saying its too high even for type 2.  I have had pancreas problems


I don't know a great deal about pancreatitis, as such. I got here via a Pancreatic Cancer diagnosis and surgery. But I have seen several posts from people who have had previous pancreatitis issues that have led, eventually, to diabetes. Some have then been categorised as T2 (erroneously in my non-medical opinion) and struggled under their GP Surgery supervision. Others become T3c and then, usually end up under hospital based spec D teams. 

Unsurprisingly, there is a need for a balance between pancreatitis problems, diabetes management and (for some) post surgical problems. I had a lot of post op difficulties for over 2 years and of course there is an underlying cancer threat for me - fortunately very much in the background. There is now an official Pancreatic Cancer (PC) website as well as info findable from the NHS for PC and pancreatitis; but PC is not necessarily relevant for yourself.


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## Leadinglights (Oct 12, 2022)

I have always been puzzled by my other half's mother now 96 years old who had severe pancreatitis requiring surgery to save her life when she was in Rhodesia about 50 years ago, the family are not sure exactly what was done but she has never had any suggestion of any type of diabetes or enzyme deficiency. The only thing was, she found dairy products upset her stomach.


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## Proud to be erratic (Oct 12, 2022)

Struggling to keep up here !!!


angelaofthenorth said:


> does anyone know how to change my 'Relationship to Diabetes' status?


Are you talking about the category you've defined in your signature for this forum - or how the NHS see you on your medical records.


angelaofthenorth said:


> Just I assumed I must be Type 2 because thought that people who have type 1 have it from birth.


By no means T1 just from birth. By chance I replied elsewhere to a thread Type2 or Type1. See


			https://forum.diabetes.org.uk/boards/threads/type-2-or-type-1.102577/#post-1205598.


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## angelaofthenorth (Oct 12, 2022)

I was just referring to the status on this forum


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## rebrascora (Oct 12, 2022)

angelaofthenorth said:


> I was just referring to the status on this forum


If you click on your username at the top right hand side of this page next to where you see the alerts, your profile page will come up and you should just be able to select a different option for Type.


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## angelaofthenorth (Oct 12, 2022)

rebrascora said:


> If you click on your username at the top right hand side of this page next to where you see the alerts, your profile page will come up and you should just be able to select a different option for Type.


thanks!


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## Proud to be erratic (Oct 12, 2022)

angelaofthenorth said:


> Thanks so much.  Why is ketosis what people aim for in those diets then? if its so dangerous?


A keto diet, or more accurately ketogenic diet, is something some people find helpful. Essentially it is ultra low carb, typically 70-75% fat, 20%protein and 10-5 % carbs and intended to make your body create glucose from metabolising fats and proteins, rather than from negligible carbs.

Our bodies depend on glucose; our brains only use glucose and will force the metabolism of fats and proteins into carbs at the expense of denying glucose to other organs. One of the challenges is deriving the equivalent of a carb count for fats and proteins. We can glean a sufficiently robust carb content of any one food type, from cheese (nil) to cornflour (100%) and know a fair bit about the glycaemic index for many different carb foodstuffs; thus how quickly, roughly, the carbs take to be digested and how long before arriving in the bloodstream. There is enough "science" in such assessments to call the process counting, rather than guessing; but we are all different and our bodies behave differently, so the science and maths has to take into account foods that don't follow the rules. Fortunately not too many foods misbehave for most of us.

But fats and proteins are far more tricky to estimate their glucose potential from, neither being a consistent insulin to glucose conversion rate for each type and varied within types of fats and proteins. I'm in favour of an easier life when possible and follow Gary Scheiner's advice in his excellent book "Think Like a Pancreas"; he says any main meal of more than 30 gms carbs will stop the possibility of fat or protein conversion adding to your carb count. Thst isn't particularly onerous, 3 meals is still well insidethe 139gms of carbs that many people feel is a more 'normal' low carb regime. I still count the carbs in snacks, such as a frothy coffee and a cookie and take a view on whether I need to bolus for that snack depending on my BG. Such snacks sit, for me, outside the 30gm carb guideline.

I have no weight problem or dietary funnies, so I eat what I want and bolus accordingly. But others do sometimes need to avoid carbs, or just feel better on low carbs and thus follow a keto(genic) (not ketosis) diet. Its worth having this in the back of your mind, since at least one forum T2 member repeatedly encourages all and sundry to go low carb, oblivious of the risk to insulin dependent Ds -T1 or T2. If you've taken insulin, your body needs enough glucose to arrive at the right time for the insulin;  or hypos become not just a risk, but potentially really dangerous: possible coma and even death if no-one close by to give (or get) help.

All advice or suggestions on this forum, especially mine (!) needs to be kept in context and seen as potentially interesting and useful but not dogmatically right.


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## rebrascora (Oct 12, 2022)

Proud to be erratic said:


> Our bodies depend on glucose; our brains only use glucose and will force the metabolism of fats and proteins into carbs at the expense of denying glucose to other organs.


I personally consider this statement as scaremongering. I cannot begin to imagine a situation where a dietary regime will result in this situation and particularly, as diabetics, we usually have enough or a surfeit of glucose in our blood unless we have used too much insulin..... which yes, happens from time to time even with people on a normal or high carb diet, but since the OP is not on insulin then it is not really relevant and indeed the whole of your response is very much from an insulin user's perspective, which is different from the OP's situation at present. The enquiry was about ketosis as a result of a ketogenic diet and how that differs from DKA or at least that is how I read it. 

As far as following a low carb diet being more difficult with insulin use, I actually find it easier and provided that I have a CGM of some type (Libre in my case), it actually involves less calculation. My BG levels usually move more slowly so I have more time to react and adjust my insulin and I do that as a reaction to my BG levels rising or falling rather than calculated values, which means I am responding to how my body reacts on this particular day in these particular circumstances rather than how it should respond, if that makes sense. I can't remember the last time I weighted or measured something and calculated. I just inject a nominal amount of insulin for a meal (usually 2-3 units) and then adjust afterwards either with insulin or carbs (sugar surf if you like) if necessary to keep in range. 
I do not advocate low carb for everyone but it doesn't have to be difficult especially with the widespread availablity of Libre now and can in my experience be easier. I can and will still have a piece of cake occasionally or a sandwich or whatever and "wing it" with bigger insulin doses, but mostly my low carb higher fat way of eating is just easier for me to manage my diabetes with insulin as well as feeling healthier and fitter and helping me to control my disordered eating..... and my brain still gets plenty of glucose as do my other organs.


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## angelaofthenorth (Oct 27, 2022)

Hi All

Quick update on my situation.  My GP has been taking various blood tests this last week - two readings of hba1c 105 and 118, Cholesterol 10.9.  They wanted to put me on metaformin right away, but I queried type 3c because of previous pancreatitis.  So they agreed to give me the test that determines type 2 or otherwise but it will be another 7 days before the results of that test come in, so meanwhile I have been prescribed gliclozide although it wont be ready for collection until saturday so not started it yet.

Does anyone have any experience of glicozide?  bit concerned it will cause me to gain weight as I already have 2 stone still to lose (after previously losing 3 stone)


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## rebrascora (Oct 27, 2022)

angelaofthenorth said:


> Hi All
> 
> Quick update on my situation.  My GP has been taking various blood tests this last week - two readings of hba1c 105 and 118, Cholesterol 10.9.  They wanted to put me on metaformin right away, but I queried type 3c because of previous pancreatitis.  So they agreed to give me the test that determines type 2 or otherwise but it will be another 7 days before the results of that test come in, so meanwhile I have been prescribed gliclozide although it wont be ready for collection until saturday so not started it yet.
> 
> Does anyone have any experience of glicozide?  bit concerned it will cause me to gain weight as I already have 2 stone still to lose (after previously losing 3 stone)


Hi again.
Good to hear that your doc is authorizing more tests. Was that the C-peptide test and if so, was it a blood or urine test?
That follow up HbA1c result is rather worrying. Have you made any changes to your diet to reduce carbs? It will be improtant to drink plenty of water or low calorie drinks to help flush some of that glucose out of your system.

If your pancreas is failing then it is likely that the Gliclazide will have little effect on your BG levels or trigger any weight gain. If you are unable to produce enough insulin yourself then you usually lose weight because the body cannot access the glucose in your blood stream so it starts to break down the fat and sometimes protein (muscle mass) from your body stores to give you energy instead.
Have you adjusted your diet to reduce the amount of glucose you are putting into your body and drinking plenty of water to help flush some of that excess glucose out?
Have they given you ketone testing strips (Ketostix) or did you buy some yourself? If so, are you testing for ketones.

I believe you have bought a BG meter but if they are prescribing you Gliclazide then they should also be giving you a BG meter and test strips on prescription. What sort of readings are you getting now... with your own meter or theirs? You should be testing your urine for ketones when your BG levels are mid teens or above. If you get a Ketone reading above 1 and your BG levels are high then you need urgent medical assistance so it is important to test to keep yourself safe.

@everydayupsanddowns Would you be able to split @angelaofthenorth's posts and replies into a thread of her own, so that it doesn't get mixed up, since her circumstances are a bit different from your average Type 2 and therefore replies need to be more specific.


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## angelaofthenorth (Oct 27, 2022)

Thanks Barbara, I really appreciate the response.    Yes the nurse has said that they will give me BG monitor so that they can monitor the readings better rather than using mine.  I did actually go to A&E a week on friday because my reading was 33.  They tested me for ketones which were 0.4.  All my other vital signs(kidneys liver etc) were in range so they eliminated diabetic emergency and referred me for urgent attention of my GP


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## everydayupsanddowns (Oct 28, 2022)

rebrascora said:


> @everydayupsanddowns Would you be able to split @angelaofthenorth's posts and replies into a thread of her own, so that it doesn't get mixed up, since her circumstances are a bit different from your average Type 2 and therefore replies need to be more specific.



Done


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## everydayupsanddowns (Oct 28, 2022)

angelaofthenorth said:


> I did actually go to A&E a week on friday because my reading was 33.  They tested me for ketones which were 0.4.  All my other vital signs(kidneys liver etc) were in range so they eliminated diabetic emergency and referred me for urgent attention of my GP



Sorry to hear you needed to take a trip to A&E, but glad everything checked out OK.

Might it be worth getting hold of some urine ketone strips from your local pharmacy? You can buy a pot of 50 for a fiver, and while they aren’t as accurate and immediate as blood strips (£2.50 *each*!), they would at least give you an indication of any build-up of ketones if your levels go that high again.

Hope it’s not long before you can get put on insulin or something more suitable than your current meds - those levels are pretty punishing


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## Proud to be erratic (Oct 28, 2022)

angelaofthenorth said:


> Thanks Barbara, I really appreciate the response.    Yes the nurse has said that they will give me BG monitor so that they can monitor the readings better rather than using mine.  I did actually go to A&E a week on friday because my reading was 33.  They tested me for ketones which were 0.4.  All my other vital signs(kidneys liver etc) were in range so they eliminated diabetic emergency and referred me for urgent attention of my GP


It does sound, in my non-medical opinion, that you do need to be on insulin. That may sound like a worse scenario than just oral meds, but if it restores some stability to your world and also puts you in a more pleasant state daily as well as a less damaging state than consistent high BGs - so be it.

The important thing is to get the right diagnosis and thus the correct category of Diabetes attributed to you. Because about 90% of people with D are T2, this disease is considered by the rule makers (NICE) to be treatable by GPs in their Surgeries, whereas T1 is referred to Specialist Clinics, usually in Hospitals.

Some T2s don't respond sufficiently to oral meds and end up needing insulin; they remain T2 and still treated by their GP; but sometimes those T2s are re-diagnosed to T1 - which they always were - just wrongly categorised originally. They should then come under the Specialists.

Those whose diabetes is actually because their pancreas is damaged (remember that T2s are producing sufficient insulin, but their bodies are resisting the insulin that is there, they have not got a damaged panc'y) are, strictly, T3. I say strictly because, surprisingly, a high proportion of medical folks are not aware of the T3 categorisation; my own GP wasn't. Fortunately that is slightly improving. Which 'flavour' of T3 depends on what caused the pancreatic damage; sub-categories go from a-k (I think). However, no matter the 'flavour' unless the T3 D is responding satisfactorily to T2 oral medications (and it sounds as though yours is not) then it is both appropriate and sensible for your GP to refer you to the Specialist teams. They understand the many types of insulin regimes and the initial contact point is a Diabetes Specialist Nurse (DSN) - not to be confused with the diabetes nurse in a GP Surgery, who deals predominantly with T2s on oral meds. The DSN has a great deal of autonomy, but also has relatively ready access to an Endocrinologist. If a change is needed to your meds then a DSN can recommend that change to your GP who will almost always write that prescription, accepting the authority of the DSN.

That is the theory. I was discharged after surgery as T1, which I never was. I had no pancreas, but not because of any autoimmune problems preventing me from producing insulin. My GP took my written T1 at face value; my first DSN was charming and helpful, but had no idea of the wider problems of having no pancreas and didn't know about T3 or T3c. My DSN and my GP colluded behind my back to ration my test strips and I had to wrestle with that stupid decision from 2 medical folks who'd stopped thinking about the consequences of no panc'y. Fortunately my rationale overtook their rationing. I dumped my first Endocrinologist who was useless. I got myself moved to another Endo, who seemed knowledgeable and who promised, in writing, to do certain things to improve my D management. Those promises were not even started so a few months later I got myself moved to a Centre of D excellence, in a different County and almost magically things improved hugely. I was lucky. I tell you this personal tale not to alarm you, but to alert you that T3 diabetes, ie from damage to a former healthy pancreas, is not widely understood and even the Specialists sometimes don't help as much as you might need. I have the D, it is in my interest to find the right person and steer my treatment, using the Specialist's skills, knowledge and prescribing power!

Anyway, it's now a further waiting game for you. If you are not a proper T1, then persist in getting your GP to accept that you could some flavour of T3 and get you referred specifically to an Endocrinologist; you might initially be outside the everyday knowledge of a DSN. With such high BGs it seems (again in my non-medical opinion) that you are digesting what you eat and the carbs are converting to glucose and reaching your blood stream. Many T3s need digestive enzymes supplements, which in medical parlance is Pancreatic Enzyme Replacement Therapy (PERT), because their damaged panc'ys have resulted in loss of or reduction of digestive enzymes - but that may not apply to you. There are different tests to verify that, which I didn't need! But I did have a malabsorption problem which plagued me post-op for almost 2 years; not only dreadful bowel problems but unpredictable conversion of carbs into glucose, thus carb counting not well related to insulin dosing.

Gary Scheiner in his book "Think Like a Pancreas" states:
_Diabetes is complicated, confusing and contradictory._
So true, before one factors in pancreatic damage! Good luck, please keep us updated.


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## angelaofthenorth (Nov 1, 2022)

Proud to be erratic said:


> It does sound, in my non-medical opinion, that you do need to be on insulin. That may sound like a worse scenario than just oral meds, but if it restores some stability to your world and also puts you in a more pleasant state daily as well as a less damaging state than consistent high BGs - so be it.
> 
> The important thing is to get the right diagnosis and thus the correct category of Diabetes attributed to you. Because about 90% of people with D are T2, this disease is considered by the rule makers (NICE) to be treatable by GPs in their Surgeries, whereas T1 is referred to Specialist Clinics, usually in Hospitals.
> 
> ...


Thank you so much I appreciate you sharing this experience.  Is it usual for T2 to lose weight in unexplained way as I have? I thought it was usually T2 who are overweight / struggling to lose weight.  You're right its really confusing ;(


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## angelaofthenorth (Nov 1, 2022)

what 


Proud to be erratic said:


> A keto diet, or more accurately ketogenic diet, is something some people find helpful. Essentially it is ultra low carb, typically 70-75% fat, 20%protein and 10-5 % carbs and intended to make your body create glucose from metabolising fats and proteins, rather than from negligible carbs.
> 
> Our bodies depend on glucose; our brains only use glucose and will force the metabolism of fats and proteins into carbs at the expense of denying glucose to other organs. One of the challenges is deriving the equivalent of a carb count for fats and proteins. We can glean a sufficiently robust carb content of any one food type, from cheese (nil) to cornflour (100%) and know a fair bit about the glycaemic index for many different carb foodstuffs; thus how quickly, roughly, the carbs take to be digested and how long before arriving in the bloodstream. There is enough "science" in such assessments to call the process counting, rather than guessing; but we are all different and our bodies behave differently, so the science and maths has to take into account foods that don't follow the rules. Fortunately not too many foods misbehave for most of us.
> 
> ...


what is bolus?


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## harbottle (Nov 1, 2022)

angelaofthenorth said:


> Thank you so much I appreciate you sharing this experience.  Is it usual for T2 to lose weight in unexplained way as I have? I thought it was usually T2 who are overweight / struggling to lose weight.  You're right its really confusing ;(



Type 2 can cause weight loss.


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## Proud to be erratic (Nov 1, 2022)

angelaofthenorth said:


> what
> 
> what is bolus?


Bolus is a generic term for faster acting insulin, taken to offset glucose in the blood from eating and also taken to correct BG levels when they higher than desired. It sits alongside basal, the generic term for slower acting insulin intended to offset glucose arising from everyday living. This latter glucose mainly, not exclusively, comes from the liver, which stores glucose reserves. It get released by various hormones triggering a message to the liver to "open its doors"; some of those messages are, in effect, routine and more-or-less hidden bodily responses and some messages from external stimulants such as stress, illness, shock, excitement. The glucose release into blood occurs for all of us; for non-Ds their pancreas just does everything necessary to keep glucose and insulin in balance. 

The package of basal and bolus insulins is known as Multiple Daily Injections (MDI) - which is one form of insulin treatment for Diabetes. Some people inject a "mixed" insulin of slow and fast, once or twice daily. The treatment path is usually started by Hospital based Specialist Teams, but for some T2s it is initiated by their GP as a progression from oral meds to insulin. Generally MDI provides a much more flexible way of managing D, but as the title implies needs several insulin doses daily. Mixed insulins work well for certain people, with the advantage of only one or 2 injections daily; but is more appropriate for people with sedentary lifestyles and very predictable eating times, meals and portion sizes. Basal and bolus allows dosing to be adjusted to daily changing circumstances and is a bit more representative of what a fully working pancreas does; but still well adrift from actual pancrwatic behaviour.

In my layman's opinion, because you could be T3c from previous panc'y damage, it would seem appropriate for you to be under a hospital based team, rather than a GP. Your diabetes would normally fall outside the scope of General Practice, or at least be assumed so - until proved otherwise. The pancreas is a small organ doing many life sustaining things and needs a Specialist (Endocrinologist) to establish what is and is not working well in your pancreatic functions.

As a matter of curiosity (not necessary if you'd rather not) could you share a little more about how much diagnosis and treatment was originally provided for your pancreatitis; and how long ago?


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## angelaofthenorth (Nov 1, 2022)

Proud to be erratic said:


> Bolus is a generic term for faster acting insulin, taken to offset glucose in the blood from eating and also taken to correct BG levels when they higher than desired. It sits alongside basal, the generic term for slower acting insulin intended to offset glucose arising from everyday living. This latter glucose mainly, not exclusively, comes from the liver, which stores glucose reserves. It get released by various hormones triggering a message to the liver to "open its doors"; some of those messages are, in effect, routine and more-or-less hidden bodily responses and some messages from external stimulants such as stress, illness, shock, excitement. The glucose release into blood occurs for all of us; for non-Ds their pancreas just does everything necessary to keep glucose and insulin in balance.
> 
> The package of basal and bolus insulins is known as Multiple Daily Injections (MDI) - which is one form of insulin treatment for Diabetes. Some people inject a "mixed" insulin of slow and fast, once or twice daily. The treatment path is usually started by Hospital based Specialist Teams, but for some T2s it is initiated by their GP as a progression from oral meds to insulin. Generally MDI provides a much more flexible way of managing D, but as the title implies needs several insulin doses daily. Mixed insulins work well for certain people, with the advantage of only one or 2 injections daily; but is more appropriate for people with sedentary lifestyles and very predictable eating times, meals and portion sizes. Basal and bolus allows dosing to be adjusted to daily changing circumstances and is a bit more representative of what a fully working pancreas does; but still well adrift from actual pancrwatic behaviour.
> 
> ...


no problem - I was hospitalised in 2015 with acute pancreatitis and again in 2016 - no episodes since.  Both times I stayed for 3 days basically for pain management because it's so horrific.  Fluids as well but otherwise no particular treatment, it just needs time for the 'flare up' to pass.  My pancreatitis was caused by alcoholism, (which thankfully I have managed to beat)


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## angelaofthenorth (Nov 1, 2022)

Proud to be erratic said:


> Bolus is a generic term for faster acting insulin, taken to offset glucose in the blood from eating and also taken to correct BG levels when they higher than desired. It sits alongside basal, the generic term for slower acting insulin intended to offset glucose arising from everyday living. This latter glucose mainly, not exclusively, comes from the liver, which stores glucose reserves. It get released by various hormones triggering a message to the liver to "open its doors"; some of those messages are, in effect, routine and more-or-less hidden bodily responses and some messages from external stimulants such as stress, illness, shock, excitement. The glucose release into blood occurs for all of us; for non-Ds their pancreas just does everything necessary to keep glucose and insulin in balance.
> 
> The package of basal and bolus insulins is known as Multiple Daily Injections (MDI) - which is one form of insulin treatment for Diabetes. Some people inject a "mixed" insulin of slow and fast, once or twice daily. The treatment path is usually started by Hospital based Specialist Teams, but for some T2s it is initiated by their GP as a progression from oral meds to insulin. Generally MDI provides a much more flexible way of managing D, but as the title implies needs several insulin doses daily. Mixed insulins work well for certain people, with the advantage of only one or 2 injections daily; but is more appropriate for people with sedentary lifestyles and very predictable eating times, meals and portion sizes. Basal and bolus allows dosing to be adjusted to daily changing circumstances and is a bit more representative of what a fully working pancreas does; but still well adrift from actual pancrwatic behaviour.
> 
> ...



Thanks to your posts I have ordered 'Think like a Pancreas' arriving tomorrow!


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## angelaofthenorth (Nov 1, 2022)

Ok so I've tested negative for type 1.  Not sure where that leaves me regarding type 3c.  Anyway I am meeting a GP whi is apparently well up on diabetes on the 10th. Ive been asked to sort out a stool sample prior to that.
Meanwhile I am going to start on Metaformin.


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## angelaofthenorth (Nov 1, 2022)

Any ideas what I should say to/ask this GP when I see him next week?


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## Proud to be erratic (Nov 2, 2022)

angelaofthenorth said:


> Ok so I've tested negative for type 1.  Not sure where that leaves me regarding type 3c.  Anyway I am meeting a GP whi is apparently well up on diabetes on the 10th. Ive been asked to sort out a stool sample prior to that.
> Meanwhile I am going to start on Metaformin.


The negative just confirms that you don't have the autoimmune conditions that would make you T1. Your original diagnosis is T2, but the question in my mind would be:  do you have the normal T2 characteristics, ie producing insulin but with an unduly high natural resistance to your own insulin; or is your insulin production impaired because of previous pancreatitis?


angelaofthenorth said:


> Any ideas what I should say to/ask this GP when I see him next week?


Could it be that you are not a straightforward T2? Could you be referred to an Endocrinologist for further tests?


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## angelaofthenorth (Nov 3, 2022)

I will ask the GP when I see him on the 10th about the endocrinologists.  Feeling a bit scared and depressed today about it all.  I need to stop googling


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## angelaofthenorth (Nov 4, 2022)

starting on Metaformin in the morning.....


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## Proud to be erratic (Nov 4, 2022)

angelaofthenorth said:


> starting on Metaformin in the morning.....


It's progress, of a sort.

Metformin helps your body manage whatever insulin you are already producing by lowering to some extent one's natural insulin resistance. I understand (my detailed knowledge of T2 is thin) it takes a while to build up in your body, so you might not see an immediate improvement. It should not put someone at risk of starting to go hypo; a normal pancreas plays a big part in balancing glucose and insulin by a different pancreatic hormone called amylase. If your panc'y is not producing amylase, there is a chance that the lowering of insulin resistance could take you into or close to hypo territory. But I imagine that your metformin start dose is small and it will take time for this to occur; this is not a medical opinion, just my layman's thought. [A normal panc'y uses the hormones of insulin, glucagon and amylase as well as producing digestive enzymes; together these allow metabolism to occur and stay in balance. I didn't know until recently that a non D is able to store surplus insulin in some form of crystal, thanks to panc'y management].

So taking metformin might reveal by 'outcome' of favourable result, that your panc'y is not unduly damaged from your earlier pancreatitis. Or it might lead to a conclusion that it's doing nothing, because your insulin production is impaired.

When you see a GP on 10 Nov a further question would be what, exactly, was tested to confirm you are not T1 and what were the actual results? Take a notebook if there is any chance the response will potentially be "gobbledygook". Ideally ask for a print out. Or, perhaps you can see the result on your app that allows you to request repeat meds?


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## angelaofthenorth (Nov 4, 2022)

Thanks Roland, I will definitely take notebook, and I am still going to ask about the Type 3mstuff, and endocrynology and i've just handed in a stool sample (very grim business) the results of which will be
 discussed on the 10th as well


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## everydayupsanddowns (Nov 4, 2022)

angelaofthenorth said:


> Thanks Roland, I will definitely take notebook, and I am still going to ask about the Type 3mstuff, and endocrynology and i've just handed in a stool sample (very grim business) the results of which will be
> discussed on the 10th as well



This page on the main Diabetes UK website gives an overview of Type 3c, which can result if the pancreas is damaged by pancreatitis






						What is Type 3c diabetes?
					

You may have heard of the more common types of diabetes like type 1, type 2 and gestational. But there are actually many other types of diabetes that aren't as well known.  Type 3c diabetes develops because of damage to the pancreas, which can happen for a few different reasons. And although...




					www.diabetes.org.uk


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## angelaofthenorth (Nov 7, 2022)

everydayupsanddowns said:


> This page on the main Diabetes UK website gives an overview of Type 3c, which can result if the pancreas is damaged by pancreatitis
> 
> 
> 
> ...


Many thanks for this, I will definitely refer to this when i see the doctor on the 10th


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## angelaofthenorth (Nov 18, 2022)

Proud to be erratic said:


> The negative just confirms that you don't have the autoimmune conditions that would make you T1. Your original diagnosis is T2, but the question in my mind would be:  do you have the normal T2 characteristics, ie producing insulin but with an unduly high natural resistance to your own insulin; or is your insulin production impaired because of previous pancreatitis?
> 
> Could it be that you are not a straightforward T2? Could you be referred to an Endocrinologist for further tests?


wow @Proud to be erratic.  Ive seen a specialist GP today who has said that I definitely am type 3c and need to start on insulin as soon as possible.  He has referred me to the specialist team at the hospital and for urgent scan with endocronologist. you couldnt have been any more accurate!


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## everydayupsanddowns (Nov 18, 2022)

angelaofthenorth said:


> wow @Proud to be erratic.  Ive seen a specialist GP today who has said that I definitely am type 3c and need to start on insulin as soon as possible.  He has referred me to the specialist team at the hospital and for urgent scan with endocronologist. you couldnt have been any more accurate!



Glad you’ve got some clear answers at last @angelaofthenorth 

The hive mind of the forum can be a pretty powerful thing!


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## Proud to be erratic (Nov 18, 2022)

angelaofthenorth said:


> wow @Proud to be erratic.  Ive seen a specialist GP today who has said that I definitely am type 3c and need to start on insulin as soon as possible.  He has referred me to the specialist team at the hospital and for urgent scan with endocronologist. you couldnt have been any more accurate!


Well I also am truly delighted for you that you have got answers that make some sense. What insulin are you starting with? Do keep posting and updating as your referrals and scans happen. Good luck with your next steps.


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## angelaofthenorth (Nov 23, 2022)

I have been started on Levermir 12 units in the morning, and Trurapi 4 units with meals.   Worried about how much weight I will put on.  Diabetic nurse reckons i will put back on all the weight ive lost over past 12 months which is 2 stone. Yikes


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## angelaofthenorth (Nov 23, 2022)

Does anyone know how long it takes for insulin to start taking effect? I know everyone is different but is a week or a month more typical?  BG was 25 this morning before taking Levermir


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## Bruce Stephens (Nov 23, 2022)

angelaofthenorth said:


> I know everyone is different but is a week or a month more typical?


Days. Levemir starts acting within a few hours after injection (and a dose doesn't typically last much more than 16 hours). I've not used Trurapi but it looks like it's much faster acting (as you'd expect for something before meals), so usually within half an hour.

How long it takes to find doses that are suitable for managing your BG is another question.


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## Bruce Stephens (Nov 23, 2022)

Bruce Stephens said:


> Days.


Should have said within a day.


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## angelaofthenorth (Nov 23, 2022)

Bruce Stephens said:


> Should have said within a day.


Thanks Paul, so it doesnt really have a cumulative effect then? so if I miss a dose or a day my levels would be back to square one?


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## Drummer (Nov 23, 2022)

angelaofthenorth said:


> I have been started on Levermir 12 units in the morning, and Trurapi 4 units with meals.   Worried about how much weight I will put on.  Diabetic nurse reckons i will put back on all the weight ive lost over past 12 months which is 2 stone. Yikes


Those nurses, they really know how to worry people.
If you had become under weight before due to a lack of insulin then you might put on weight, but if you eat according to what you need, then you should simply recover from the lack of a functioning pancreas once you get the right medication.
As a type 2 I eat a really dangerous diet high in protein and fat (only joking) and I feel great and don't put on weight. I was able to work out what to eat using a test meter and checking after meals.
You'll have to find a balance using your own experience - but it can't be beyond the wit of man to work it out, I'd have thought. I'd advise getting advice here though, or at least from people who are actually living with diabetes.....


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## angelaofthenorth (Nov 23, 2022)

sorry I dont know where Paul came from?! - Bruce....


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## angelaofthenorth (Nov 23, 2022)

Drummer said:


> Those nurses, they really know how to worry people.
> If you had become under weight before due to a lack of insulin then you might put on weight, but if you eat according to what you need, then you should simply recover from the lack of a functioning pancreas once you get the right medication.
> As a type 2 I eat a really dangerous diet high in protein and fat (only joking) and I feel great and don't put on weight. I was able to work out what to eat using a test meter and checking after meals.
> You'll have to find a balance using your own experience - but it can't be beyond the wit of man to work it out, I'd have thought. I'd advise getting advice here though, or at least from people who are actually living with diabetes.....


Thanks for that! I didn't become underweight with the weight loss - i'm still 2.5 stone overweight! (that's even after I lost the 2 stone over last year)


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## Lucyr (Nov 23, 2022)

angelaofthenorth said:


> Thanks Paul, so it doesnt really have a cumulative effect then? so if I miss a dose or a day my levels would be back to square one?


When I miss a dose of insulin my bg will be high 20s or low 30s within hours.


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## Bruce Stephens (Nov 23, 2022)

angelaofthenorth said:


> Thanks Paul, so it doesnt really have a cumulative effect then? so if I miss a dose or a day my levels would be back to square one?


No, there's not really a cumulative effect. Insulin works while it's active, allowing cells to use glucose, and you've got two kinds of insulin: Levemir which'll usually keep active for 16-20 hours, I think (but less than a day) and Trurapi which looks like it'll be active for 4-5 hours. (And Levemir is designed to try and have fairly constant effect across that time whereas Trurapi (like other quick acting insulins) has more of a spike because it's intended for handling meals.)

Those of us who don't produce any insulin ourselves certainly notice when we miss a dose.


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## angelaofthenorth (Nov 28, 2022)

is it normal to feel really tired after eating?


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## Lucyr (Nov 28, 2022)

angelaofthenorth said:


> is it normal to feel really tired after eating?


As you’ve only recently started insulin and are still adjusting your doses and timings, it probably means your bgs are going too high after eating. It’s normal to take some time to understand the right doses for you.


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## rebrascora (Nov 28, 2022)

It is normal if your levels are very high. Have you tested when you feel like that?
How long after eating do you feel tired?


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## angelaofthenorth (Nov 28, 2022)

I used to feel like this before I knew about the diabetes.  Maybe I am just noticing it more now


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## angelaofthenorth (Nov 28, 2022)

rebrascora said:


> It is normal if your levels are very high. Have you tested when you feel like that?
> How long after eating do you feel tired?


pretty much straight away.  yesterday afternoon I couldnt get a reading at all, the monitor was just flashing HI


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## rebrascora (Nov 28, 2022)

Did you wash your hands and double check! A genuine reading like that which usually means your levels are in excess of 33 really should tell you to get urgent advice.... 111 or go to A&E. Do you have ketone strips to test for ketones? 

What sort of readings are you getting today?

Have you started insulin yet?

You really need to call whoever is in charge of your diabetes care urgently and get advice/support. This is dangerous.


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## angelaofthenorth (Nov 28, 2022)

it was 19 first thing before breakfast


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## angelaofthenorth (Nov 28, 2022)

29.5 just now - finished eating about 15 minutes ago and did take my fast acting insulin as well

I take Levimir and truropi


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## Bruce Stephens (Nov 28, 2022)

angelaofthenorth said:


> I take Levimir and truropi


Not enough, by the sounds of it! I presume your healthcare team will be advising on raising the amounts. At those sorts of levels you are likely to feel tired.


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## rebrascora (Nov 28, 2022)

What was your premeal reading and how soon before eating did you inject your insulin and what did you eat?
I am worried that that is going to go higher before it comes down a bit.

When I said in my post above that it was normal that you would feel tired when levels are high.... I didn't mean to suggest that going high and feeling tired is normal and OK, just that if your levels are high then they will make you feel tired.

Levels this high are dangerous and you need more adjustment of your insulin. Please speak to someone today about them and test for ketones.


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## angelaofthenorth (Nov 28, 2022)

Tested Ketone just now, it was 0.3


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## rebrascora (Nov 28, 2022)

Phew!!


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## angelaofthenorth (Nov 28, 2022)

rebrascora said:


> Phew!!


does the ketone result mean im not in so much danger now?


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## rebrascora (Nov 28, 2022)

angelaofthenorth said:


> does the ketone result mean im not in so much danger now?


It means not in immediate danger of Diabetic KetoAcidosis (DKA) but those levels can still be doing you harm and ketones can develop suddenly so do keep testing regularly when your BG levels are mid teens or above. If they are always 15 or more, test every time you go to the loo. 
Your insuiin doses clearly need to be increased to bring those BG levels down slowly and steadily and leaving them so high puts a strain on your whole body but particularly your eyes and heart so please do not be tempted to do exertive exercise when your levels are so high. 

You still need to speak to your nurse to tell her about how high your levels are and ask about adjusting your insulin and you should seek feedback about that today or tomorrow at the latest regardless of the lowish Ketone result. If your ketones go above 1 you need urgent medical help. ie 111 or 999 or go to A&E 

Off the scale BG readings (ie your meter saying "HI") are dangerous and you need advice from your nurse on what to do when that happens. Those of us who are experienced with insulin, would be injecting correction doses, but without experience and knowledge that can also be dangerous, so you need advice. If you haven't been given any then you need urgent assistance.


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## angelaofthenorth (Nov 30, 2022)

Diabetes nurse has upped my Lev to 16 units from 12.  No change on the fast 
acting Trup. Feeling really drained, almost worse than before I started treatment


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