Discussions By Condition: I cannot get a diagnosis.

acetone breath glucose issue

Posted In: I cannot get a diagnosis. 17 Replies
  • Posted By: Kris13
  • September 12, 2007
  • 06:56 PM

Hi everyone,

I'm posting for my husband because he is unable to get a diagnosis. For the last year he has been experiencing odd reactions to sugar. If he eats anything high in sugar, in about 15 minutes or less he is totally looped. It's like he's drunk. He also has this severe acetone breath that is so bad it fills the room. The other symptom when this occurs is that he will urinate huge amounts, and his eyes pupils seem to be dialated. I am afraid of what will happen if he isn't diagnosed soon because when this occurs, his mental state is not stable. And often if he has not eaten anything he is also a little "off."

Of course the first thought was diabetes. He has had two FBS and they come out normal. They have not done a glucose tolerance, however. I checked his urine for ketones myself--nothing. It has totally disrupted our lives and I'm concerned for his safety while he's at work. They are telling me it is not diabetes, but are not willing to keep looking at what it may be. He has checked himself into the VA a couple of times and they actually did a blood alcohol because they thought he had been drinking. He has been through prostate cancer, which was contained and he is now free of that. He also has CLL due to agent orange, which is also stable and is not receiving treatments for. They have done all the basic blood work and it all comes out normal.

If anyone has any insight at all, or which direction we might take, I surely appreciate it!!

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17 Replies:

  • I am a diabetic, type 1. I well recognize all these symptoms, because I have had them. It would surprise me if he is diabetic and not in ketosis, but ketone levels return to normal very quickly in me once my glucose levels are normal.He might also be hypoglycemic. His "loopy" behavior could really be from either high or low blood glucose. Dilated pupils often mean LOW glucose for me. Acetone on the breath means high glucose and ketones for me. His glucose could be spiking way up, and then his body may make too much insulin and drive the glucose low. Other signs of low blood glucose include breaking out in a clammy sweat or shaking hands. I am not a doctor, but I would seek a second opinion, and I would seriously consider buying an inexpensive glucometer, a small glucose testing machine which uses a pinprick on the finger to measure blood glucose. I would see what his blood glucose is before meals, an hour or two after meals, and any time he feels dizzy or confused. Go in to the doctor armed with that data. If he is consistently showing numbers over 140 or under 65 or so...that would be very significant. Normal blood glucose is 80-120. One brand of machine can also test blood ketones, but the test strips are expensive, and I don't think you necessarily need to splurge on one of those. If the glucose is looking normal, he might need to see a urologist. Urinary problems can cause some of those symptoms also. If he is urinating too much, he could be dehydrated. If his skin stays pinched longer than yours when you pinch the arm up gently, he might be dehydrated. Get him to a different doctor or a local clinic. In the meantime, I suspect he should avoid fast carbohydrates like sodas and try to eat slower ones, slowly.You are correct to be concerned. Insist on further examination and a diagnosis. If he's hypoglycemic or diabetic, he needs treatment now, not in another year.If you for whatever reason decide to use a glucometer belonging to a diabetic friend, make sure no blood is exchanged. In other words, wash the lancet device in soap and water if a lancet device is shared, use a clean sterile lancet, and carefully clean any area of the machine which may have contacted blood. I use an alcohol swab or alcohol on a QTip. Don't get liquid inside the machine itself. The blood should ideally stay on the test strip.
    BesideMyself 41 Replies
    • September 12, 2007
    • 10:34 PM
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  • Thanks kindly for your reply. I do have a glucometer and I also purchased ketone strips. I thought it odd that when he was in that state (what I thought was blowing ketones) the strips came up normal. He is also very aggitated, when he is like this, and uncoopertive, so he'll give me a hard time with a finger stick. I guess that's why I haven't insisted on it. One time when all this started I called the EMS and he refused to go. They did do a fingerstick and it was normal. I'll check the skin thing for dehydration but I'm pretty sure that is going on. It's very distressing to see him in this state and all his tests come out normal. Urology sounds like a good lead, but his urologist referred him to endocrine. Thanks so much for your help.
    Kris13 6 Replies
    • September 12, 2007
    • 11:48 PM
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  • Read about the glycemic index. Certain sugary carbs, as above, enter the bloodstream very quickly. Other carbs are slower. Feed him only these while you are waiting for the second opinion. Actually, most people would do better with the slow carbs.
    rad-skw 1605 Replies
    • September 13, 2007
    • 08:00 AM
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  • Also look up uremia (excessive urine wastes, bad breath and mental confusion). Also, look up insulinoma. I don't see how he can have ketone breath, and it not be in the urine. Ketones smell fruity. My dad had a pancreatic problem and had a horrible chemical type breath. Insulinomas are on the pancreas.
    rad-skw 1605 Replies
    • September 13, 2007
    • 08:14 AM
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  • I agree-- avoid all refined sugar, white bread, potatoes, rice and read food labels tio avoid fructose, corn syrup and other sugars. Candidiasis (yeast infection) is a controversial topic, but some of the symptoms you describe have been linked to it. Good luck!
    aquila 1263 Replies
    • September 13, 2007
    • 04:26 PM
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  • Thanks all, I'm checking out the glycemic index and also the insulinoma. It's extremely frustrating because without lab values that indicate at least something, the docs have the attitude that either it doesn't exist or that it can't be all that serious. In the mean time my concern is that he's going to end up wandering around not knowing where he is, somewhere. I too, cannot understand how he can have this heavy ketone breath and nothing be in the urine. I read a little on metabollic acidosis, and I'm wondering about that. Also, regarding the kidney thing, they did a BUN and everything was normal there. Wouldn't something come up there, if he had some kind of renal issue? Regarding the candidiasis, I brought that up to one of the doctors and they told me if it were that it would be evident all throughout his digestive tract. Like you say, the symptoms are exact. Autobrewery syndrome, is the term I believe. This I would like to investigate further because it seems so on the mark. I'm also wondering if he can be diabetic and have a normal fasting blood sugar. I'm going to try to do the fingerstick thing this week and will let you know. I appreciate the replies.
    Kris13 6 Replies
    • September 13, 2007
    • 07:28 PM
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  • There is a bloodtest for candidiasis. The controversy is that many/most mainstream medical professionals believe there is no such thing as a low grade candidiasis. It's more typically an alternative medicine diagnosis at this point in the US. He doesn't have the extreme officially recognized candidiasis or he'd be in the hospital. Not all labs do the test, so your doctor would probably need to call first and see if they do. The large chain lab with a Q in the name does do this test. I don't know about others, but your doctor may. It takes a long time to get results back. My doctor was willing to have me tested for it because we'd tested for all kinds of things and my symptoms remained unexplained.
    BesideMyself 41 Replies
    • September 15, 2007
    • 06:01 AM
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  • Thanks for your reply. I believe this will be the next step. We have a holistic group in the area that I used to see, which would be willing to write for this test. When I first read about the Candida thing I thought for sure this was it, since nothing else made sense. So are you saying that even with a lower level infection, these kinds of symtpoms can occur?
    Kris13 6 Replies
    • September 15, 2007
    • 11:29 AM
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  • Basically, the mainstream medical community does not recognize this condition. It may or may not exist. There is a large body of material on the internet from people who had a wide array of symptoms and believe that treatment for candidiasis resolved their problems. The kind that is recognized by mainstream medical is very rare and typically involves dramatic symptoms which can include multiple organ failure. He obviously does not have that. People who say they suffered from low grade candidiasis report a lot of digestive problems, "leaky gut" which is loud sloshing sounds in the tummy and abdominal discomfort, and a bunch of symptoms. When researching this, I did see a few references to people who described breath odor and "fermenting" smells coming from them. Alternative medicine sites seem to agree that too much sugar encourages candidiasis.My test results indicated I had high results on two scales, but not on the one that is a cause for concern.
    BesideMyself 41 Replies
    • September 16, 2007
    • 08:08 AM
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  • One thing I thought of, regarding this autobrewery thing is that they tested positive for blood alcohol, where as in my husband's situation it was negative. I am frustrated beyond belief. Stress seems to even play a part in it. And it's to the point where he less himself than he is this other person who is loopy and out of character. It doesn't sound like leaky gut and he is otherwise healthy in appearance, without weight loss or gain, swelling etc. When this occurs he becomes unusually tired and will sleep like a rock for 10-12 hours.
    Kris13 6 Replies
    • September 16, 2007
    • 11:00 AM
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  • Drowsiness and difficulty waking are very common when someone has low blood glucose.I am still thinking this is some kind of hypoglycemia, but what's puzzling me is the acetone breath which is from high. An untreated diabetic would not normally be showing symptoms of low glucose.Hmm. This may help.http://en.wikipedia.org/wiki/Reactive_hypoglycemiaThere's a condition down at the bottom I have never heard of before.
    BesideMyself 41 Replies
    • September 16, 2007
    • 00:23 PM
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  • Thanks for the link. I feel like somewhere within all of that there may be some answers. I'm having a little difficulty sorting it out, but I notice that many of the symptoms are there. Like you said, the heavy acetone breath doesn't match up. His latest fbs was 106, which also doesn't necessarily fit. And because his behavior borders on psychotic when he's like this, I feel uncomfortable sticking him with the glucose gun. Sometimes when he goes down for all those hours I wonder whether he'll wake up at all. I feel like when I go with him to his appointments they just don't want to address it with any serious and treat me like I'm nuts or telling them what to do. The VA has yet to schedule him for endocrinology, so I'm hoping that if we can get him in there, perhaps they'll do more peripheral type blood work. Thanks again.
    Kris13 6 Replies
    • September 16, 2007
    • 05:20 PM
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  • Regarding dangers if he is sleeping for a long time and unwakeable, you are right to be concerned about that until you rule out severe hypoglycemic and severe hyperglycemic episodes. Of particular concern is hypoglycemia (low) because while the liver is generally able to pull enough glycogen out to revive the person eventually, that can be depleted, and he could at some point go into insulin shock. You should do a search on insulin shock and learn the symptoms, just in case. I think it is pretty rare in hypoglycemics as opposed to diabetics who are insulin treated, but we don't know what he has yet, so it's probably a matter of better safe than sorry.
    BesideMyself 41 Replies
    • September 17, 2007
    • 09:10 AM
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  • Re-check the acetest strips that you are using. They may be out-dated or contaminated. Is it really a fruity, sweety breath? Can the docs smell it. Does it go away when he eats carbos? Be alert for signs of ketoacidosis (acetone breath, dehydration, weak and rapid pulse, and Kussmaul’s respirations) and hyperosmolar coma (polyuria, thirst, neurologic abnormalities, and stupor). These hyperglycemic crises require I.V. fluids, insulin and, usually, potassium replacement. The “other specific types” of DM result from various conditions (such as a genetic defect of the beta cells or endocrinopathies) or from use of or exposure to certain drugs or chemicals. (agent orange?)
    rad-skw 1605 Replies
    • September 21, 2007
    • 10:21 AM
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  • Thanks for your reply. All of these symptoms seem to come on with the intake of carbs, rather than be relieved by it. Not only did I check the date, but he has been tested in the lab for ketones in the urine and it comes up negative. At one point when he was feeilng symptomatic he did drive himself to the VA and they did smell it which was why they kept him and tested his blood alcohol, which was negative. The smell is almost like nail varnish or pear drops. If he were to drink a bottle of soda it would come on quickly and the effects could last for days, though the long sleep usually at least brings him back to a functioning level. If you didn't know him you would assume he was just drunk, but it's not really like an alcohol related buzz. It's more like he's not himself, with inappropriate scary behavior. I don't know a lot about the effects of dioxin at this point other than the two cancers he's now been diagnosed with. I am hoping and praying that the VA will send him to endocrinology and from there they will actually know what to test him for. It seems they keep running the same basic labs on him. If you know of a specific test related to the conditions you suggest, perhaps you could let me know and I'll pass it on when we see the VA next.Thanks so much
    Kris13 6 Replies
    • September 21, 2007
    • 11:43 AM
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  • OK, nail polish/varnish is not the sweetish acetone breath I'm thinking of. Fruity and yeasty. Now that you have mentioned it, my dad's breath did smell like chemical paint! He had severe diabetes brought on by pancreatic cancer. If he had a drink, he would get "loopy". The carbs your dad eat are signaling the pancreas to release insulin. His symptoms are from a faulty pancreas releasing too much or too little insulin. Sorry, I'm not better informed about diabetes and the pancreas. There are about a million variations of a malfunctioning pancreas. It sounds like he is in insulin shock when he sleeps. If you are not satisfied with VA, can you go someplace else, maybe even an ER? I think his condition is critical and needs to treated STAT.
    rad-skw 1605 Replies
    • September 22, 2007
    • 11:10 AM
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  • Ok, thanks. All along I have wondered about the pancreas but just not quite sure. I thought too, that something would have shown up in his labs. Obviously they're not testing for the right things. Interesting that you recognized that same smell with your dad. If and when we get a diagnosis I'll post it.
    Anonymous 42789 Replies
    • September 22, 2007
    • 04:43 PM
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