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I'm a new diabetic having had a total pancreatectomy 4 weeks ago

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Peter Belshaw

New Member
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Type 3c
I am finding some difficulty in keepig ketone levels down and if anyone has any basic tips to help me i'd be most grateful.
 
Peter Belshaw said:
I am finding some difficulty in keepig ketone levels down and if anyone has any basic tips to help me i'd be most grateful.
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Welcome to the forum Peter.

Your ketone levels are an indication of your glucose levels in the blood.

There is loads to learn at the start, and I found the book Type1 Diabetes in Children Adolescents and Young Adults by Ragnar Hanas very useful. Ignore the age reference, I was diagnosed at 53 and found explanations very clear. I know the circumstances of you being without insulin are different but the management for you now will be similar.

There are are others in here who without a Pancreas (@eggyg ?) and will be able to help you with the other issues that arise.

Can you tell us what insulins they have put you on? How are you managing your insulin?
Without our beta cells we have to balance the carbohydrates we eat and the insulin we give ourselves. Eventually this becomes just part of a new ‘normal’ life.
 
Welcome @Peter Belshaw. I had a distal pancreatectomy ( tail and body removed) in 2007. The bit I have left is kaput now so in effect I don’t have any pancreas left. You’re only four weeks in and you’re still very much in recovery. Any illness will affect your blood sugar levels. Are you still in hospital? If so can you get in touch with the Diabetes team there, they should be able to help. If not, please get in touch with them anyways. What insulin and doses are you taking? If very much seems like it needs tweaking. Are you taking Creon? That can raise your BGs ( blood glucose) too. Strangely enough I didn’t become diabetic until three years after my op as my remaining bit of pancreas was still producing insulin so can’t totally relate to your case.
There are some members without a pancreas but they don’t appear to have been on the forum lately. First and foremost speak to the experts, sooner rather than later, as you really don’t want to be getting into DKNA land. Anything else regarding being a type 3C please ask away and I’ll do my best to help. Take care. Elaine.
 
Hi Elaine, thank you so much for your response. I was out of hospital after 10 days, and yes, I do have to have creon, 3 per meal. i still have a poor appetite, and have generally set out with the aim of maintaing a low carb regime, however even with quite small carb intake i tend to be spiking with my BG quite readily. It was only this week that i was introduced to the delights of a ketone monitor, and have been surprised that levels have been quite high, but with a range between 2.2(!) and 0.4. This does appear to vary between high when meal has been low carb and low when i've had a bit more. I have been advised to put up my short acting insulin from 3 to 4 units, and Levermir is currently 5 each night. I don't seem to have acidosis symptoms, save for being v tired, although people say this can still be attributed to the proximity of the surgery. I guess that we are in a similar boat, despite having got there via different routes. Peter.
 
Q from me if I may? Are these ketones accompanied by equally high BG for several hours?
 
I agree with @trophywench... Ketones are only a problem if your BG levels are high. You should not be testing your Ketones unless your BG is high (14+) firstly because the test strips for blood ketones are very expensive and secondly, it could worry you unnecessarily, particularly if you are following a low carb diet, as that can lead to higher ketone levels I believe but without the high BG reading it is not dangerous.
 
Yeah the ketones that appear when you eat mega low carb/very little at all are what's generally known as 'dietary' ketones. As long as your BG is at a reasonable level (certainly in single figures) most of the time, acidosis is unlikely to take hold.

I don't think the dietary ones cause any symptoms really - other than the higher they are the more likely your breath is to smell of pear drops. However - I'd hope your consultant/houseman/specialist nurse would be able to confirm that, cos you need to know for definite with them being that high!.Can you ring, cos I think it's pretty urgent in case I'm wrong!
 
Welcome to the forum @Peter Belshaw

As others have said, ketones can be confusing if you are eating low carb, because ketones are a byproduct of burning fat as energy (rather than carbs).

Good to keep in close contact with your HCPs because ketones in the absence of insulin and presence of high BG can turn nasty very quickly... but ‘starvation’ or dietary ketones may simply indicate that you are topping up your energy requirements from sources other than carbs.
 
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