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Old 05-03-2006, 01:36 PM   #1
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cjsmetal1 HB User
Exclamation Problem getting a diagnosis!

I have been trying to obtain a diagnosis of my medical problem for ten years. Experiments with a finger-*****ing meter seemed to indicate that my blood sugar movements are abnormal. In desperation I bought a continuous blood sugar glucose monitor which, to my untrained eye, confirmed this. My blood sugar would sometimes rise extremely rapidly (within half an hour) to a high level (eg, 10.3 mmol/L) immeadiately after eating and then immeadiately (or after a delay of up to half an hour) fall very rapidly to a much lower level than before the meal. At other times, my blood sugar would not rise at all (or even fall). Sometimes my blood sugar would oscillate several times between meals, as though bursts of insulin are being produced. Only occasionally will my blood sugar go into the hypoglycaemic range eg, 2.5 mmol/L. Is there anyone who would be able and willing help me make sense of these seemingly strange results?

Last edited by cjsmetal1; 05-03-2006 at 01:39 PM.

 
Old 05-03-2006, 04:11 PM   #2
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vikingirl HB User
Re: Problem getting a diagnosis!

Hi there cj, and welcome. You'll find lots of folks here that are willing and able to give you support. You'll have to help us out, though...need a bit more info.

Ten years is a long time to be looking for a diagnosis. Have you raised your concerns to medical professionals? Did they provide you with any test results (glucose tests, fasting bloodwork) to determine if you have or are a candidate for diabetes, pre-diabetes, hypoglycemia? With the finger testing you're doing....are you concerned you may have diabetes or the like? Continuous glucose monitor results....were they reviewed by and Endocrinologist or diabetic nurse?

On the finger tests...the numbers you provide don't really seem outta wack, except for those lows. Occasionally means how often (do you go low): daily? Weekly? Every couple months? The finger tests don't really make much sense unless you put them in context, too. There is a "rhyme or reason" to when you should test. Test when you first get up - called "fasting" - assuming you haven't eaten in 8+hours :-). This one'll tell you how your body functions without food - your baseline. If you want to see just how your meals are affecting your blood sugars...test just before you eat, then 2 hours after you START eating. You can expect that your BGL would rise at the onset of digestion when insulin gets pumped out. It'll fluctuate but stabalize around the 2 hour mark. This is a good judge of how your body processes what you eat.

At any time a non-diabetic's blood glucose is between 4-7. For diabetics, before meal BGL goals are also between 4-7 but the after meals should still fall between 5-10. One thing to keep in mind, though.....these tests are also assuming that you are eating properly. Ideally, 5 small meals throughout the day or 3 meals with snacks in between. If you just say, eat dinner at 6PM, then skip breakfast, grab a donut and a coffe at 11AM...you've just gone 17 hours without food. Of course you'd crash and have low blood sugar. Fixing it with caffeine and sugar will then just temporarily fix the problem (shooting your sugars way up) but then make it much worse in the long run (crash and burning within a couple hours after). Sorry, I'm rambling on this one but I'm just trying to make the point that diet is soooo important when it comes to making sense of "suspect" blood glucose levels. More often than not, diet is what needs adjusting.

So...give us a bit more info on your fasting, before/after meal BGLs if you can, also what you eat and we'll have more info to better help.

Cheers,
- Vikingirl

 
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Old 05-03-2006, 06:40 PM   #3
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blondy2061h HB User
Re: Problem getting a diagnosis!

There aren't any continous meters on the market. Do share about this continuous monitor you bought...

 
Old 05-04-2006, 12:06 PM   #4
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vikingirl HB User
Re: Problem getting a diagnosis!

Actually, there is what they call a continuous blood glucose monitor on the market (US, UK) called a GlucoWatch. It's literally that - a watch. It takes a blood sample every 10 minutes through something under the watch face. Very expensive, though. But it's been available since 2002. Not too sure about it - seems like there could be a whole lot of reasons for getting skewed results.

There also does exist "real" continuous blood glucose monitors that work similar to the insulin pump. I say real because I would equate the GlucoWatch to CBGM as like what our home monitors are compared to lab tests - one's more accurate than the other :-) The real (there I go again) CBGM are usually at hospitals & clinics because you literally get hooked up for 3 days (like the pump), with a canula-like thing that stays inside you and measures your BS at intervals. This raw data is downloaded and analysed by a medical professional. It's not something you can do on your own. That's why I was asking cj for clarification on the results.

Cheers,
- Vikingirl

 
Old 05-04-2006, 06:43 PM   #5
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blondy2061h HB User
Re: Problem getting a diagnosis!

Quote:
Originally Posted by vikingirl
Actually, there is what they call a continuous blood glucose monitor on the market (US, UK) called a GlucoWatch. It's literally that - a watch. It takes a blood sample every 10 minutes through something under the watch face. Very expensive, though. But it's been available since 2002. Not too sure about it - seems like there could be a whole lot of reasons for getting skewed results.

There also does exist "real" continuous blood glucose monitors that work similar to the insulin pump. I say real because I would equate the GlucoWatch to CBGM as like what our home monitors are compared to lab tests - one's more accurate than the other :-) The real (there I go again) CBGM are usually at hospitals & clinics because you literally get hooked up for 3 days (like the pump), with a canula-like thing that stays inside you and measures your BS at intervals. This raw data is downloaded and analysed by a medical professional. It's not something you can do on your own. That's why I was asking cj for clarification on the results.

Cheers,
- Vikingirl
The Glucowatch is considered extremely inaccurate, and the Medtronic Guardian (two versions of this one, realtime and healthcare) has a 40% range of accuracy. In other words, neither one is accurate. ALSO, both require a prescription. The guardian for home use isn't shipping yet, so if would be the glucowatch if anything. Or the Dexcom. The Dexcom is also 40% accurate. All three devices require prescriptions. With a doctor telling her there is no problem, I would highly doubt she had such a prescription.

Last edited by blondy2061h; 05-04-2006 at 06:45 PM.

 
Old 05-04-2006, 11:56 PM   #6
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cjsmetal1 HB User
Re: Problem getting a diagnosis!

Thank you for your reply, I'm most grateful.
The "Medtronic minimed Guardian" costant glucose monitor is the only one available but costs £3,500 (this is how desperate I am for a diagnosis after being ill for 10 years). It can be used by a non professional and requires a needle to be inserted into the cells in the skin on your stomach. I accept that the accuracy is not 100% but this inaccuracy doesn't explain the dramatic speed change and high or low readings of my insulin levels. Once again many thanks.

Last edited by cjsmetal1; 05-04-2006 at 11:57 PM.

 
Old 05-05-2006, 08:10 AM   #7
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iwonder HB User
Re: Problem getting a diagnosis!

One of the first things I had to do was keep an extremely strict food diary/journal after being daignosed with GD and I had to test my BG up to 10 times a day. This helped determine any spikes/drops in blood sugar and food relationships. Example--Day one breakfast (7:30 am) fasting BG 117 (sorry, not sure of UK number...maybe... 6.5), 1 cup rice krispies, 3/4 cup milk, 1 meduim egg, 1/2 slice whole wheat toast. Then I would test my BG 1 and 2 hours post-prandial and since I have to eat every 2 hours I would then write my snack down, BG numbers, lunch, BG numbers, snack, BG numbers, dinner, BG numbers, snack, BG numbers. It is a pain in the butt but I did it for five days and with the help of a diabetes counselor came up with the right amount of carb/protein/fat servings per meal/snack. It maybe worth it to try something like that, you may see a correlation between food and spikes/drops. And write down everything that you eat or drink and at what times, even if it is one jelly bean your kid shared with you . Good luck

 
Old 05-18-2006, 07:20 AM   #8
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cjsmetal1 HB User
Re: Problem getting a diagnosis!

Many thanks to Vikingirl, blondy2016h and iwonder for your comments. Sorry I haven't been back but ill-health doesn't help.

To answer Vikingirl's questions first: With regard to the ten years I've been looking for a diagnosis of my apparently strange BG variations I have, of course, consulted numerous medical professionals including six endocrinologists. Unfortunately, from the latter I've had five different diagnoses. The two that agreed with each other said that there is nothing wrong with me, so I hope that you can understand my frustration!

One observation I've made over the years is that doctors don't like patients to know anything medical - at least that is my experience! I've even been told by two doctors that everything on the Internet is rubbish!

I have been diagnosed (I believe correctly) as pre-diabetic (with Impaired Glucose Tolerance).

I am aware that (normally) blood glucose rises for about an hour after eating - the amount of rise being determined by the GI of what has just been eaten - and then falls back for about another hour. Because of the perculiar variations in my BG previously mentioned I am having six small meals/snacks a day with no sugar; I do know about sensible eating.

blondy2016h says that there aren't any continuous blood glucose meters on the market but Vikingirl mentions the Glucowatch Biographer. From my investigations the Glucowatch isn't very accurate at low BG levels. Because of this they have brought out a Mk2 version but I don't know anything about it. Medtronic, some years ago, made a 72-hour BG monitor that had to be fitted by a clinician and from this produced the 'consumer' version which I bought. You may be aware that around six manufacturers are trying to get into this market because continuous BG monitors are seen as the way forward from finger-stick meters for diabetes management. Although the Medtronic monitor is inherently inaccurate - as all meters are - its main problem from my perspective is that it drifts slightly over time. This is dealt with by recalibration by means of a finger-stick meter at intervals not greater than twelve hours. The five-minute readings of the Medtronic monitor are a mean of numerous smaller interval readings and so its accuracy is really quite good. I can provide further information if anyone wants it.

Cjsmetal

 
Old 05-18-2006, 01:01 PM   #9
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blondy2061h HB User
Re: Problem getting a diagnosis!

I'm just wondering how you got a doctor to prescribe a guardian if you don't have a diagnosis?

 
Old 05-20-2006, 02:42 AM   #10
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cjsmetal1 HB User
Re: Problem getting a diagnosis!

Thanks blondy2016h for your response.

You don't need a doctor's prescription for a Medtronic 'Guardian RT' Continuous Clucose Monitor. All you need to do is to contact Medtronic - they have offices in a number of countries - provide lots of money and they will send you one. They provide the instructions on how to use it and all necessary technical support.

You do need a doctor's prescription for the previous Medtronic CGMS - from which the Guardian RT was developed as it has to be fitted by a medical professional. The Guardian RT has a do-it-yourself applicator for the insertion of the sensor into the abdomen or near area. It is also different from the earlier system in that the monitor gives a real-time readout (the earlier system doesn't) with high and low glucose alarms (the levels of which can be set by the user) which enable diabetes sufferers to take immediate action such as an insulin injection or taking some glucose or carbohydrate.

Another advantage of the Guardian RT is that the monitor isn't connected to the sensor, unlike the previous system. The sensor is attached to a radio transmitter which you stick to your abdomen. This transmits data - hence 'RT'; 'Radio Transmission' - to the monitor which you clip to your belt or wherever. The instructions say that the monitor must be within ten feet of the transmitter but, unfortunately, this rule doesn't work while you are asleep if you put the monitor on a bedside table, for example. The monitor will 'alarm' after a while saying that it has lost the signal from the transmitter. Apparently, according to the experts at Medtronic, they reckon that the bedsprings interfere with the transmission! They're still working on the problem! The only solution at present is to have the monitor in bed with you; I clipped mine on to the waistband of my pyjamas.

I bought one because my finger-stick meter showed unusual variations in BG and I felt that the Guardian RT would provide more comprehensive information. This it certainly did and I'm now trying to find an endocrinologist who is familiar with the Guardian RT who can interpret the graphs that the Guardian RT produced, telling me whether the BG variations I have noted are normal or abnormal. My GP had never heard of the Guardian RT or even Medtronic and I asked him if he would refer me to someone who could help.

Cjsmetal

 
Old 05-20-2006, 07:47 AM   #11
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blondy2061h HB User
Re: Problem getting a diagnosis!

Ah, in the US that definitely requires a prescription. Also, I never even bothered looking into it, since it is not considered accurate enough to make changes, like treating lows and taking insulin by, so it wouldn't have cut back on blood sugar tests for me.

 
Old 05-27-2006, 03:08 AM   #12
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cjsmetal1 HB User
Re: Problem getting a diagnosis!

Thanks blondy2016h for your response.

As I'm not familiar with the American health system I can't comment on why you have to have a doctor's prescription for a Medtronic Guardian RT Continuous Glucose Monitor, but it seems odd to me when I can buy one direct from Medtronic in England. I'm also puzzled by your comment that it is very inaccurate. This was also my concern - as I said that all meters of whatever sort are inherently inaccurate - and I discussed this with Medtronic. I was reasonably reassured that the accuracy was sufficient for me to see how my BG was varying over time.

I'm still trying to find an endocrinologist who can comment on my sometimes wild BG excursions - up to 6 mmol/L in half an hour up or down - or even an endocrinologist who has even heard of the Medtronic system! I've seen eight so far and had seven different diagnoses! One of my many problems is that they say that it is normal for BG to swing up and down within the normal BG limits between meals despite the textbooks saying that BG rises for an hour after eating and then falls for another hour.

I have noted that when I have a very rapid rise or fall in BG I feel faint, weak and go very pale. (This can happen at any time, and happened three times in quick succession yesterday.) If this is normal then I would imagine that doctors' surgeries would be full of concerned patients!

Cjsmetal

 
Old 05-27-2006, 05:21 AM   #13
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blondy2061h HB User
Re: Problem getting a diagnosis!

I'm not saying the way you are feeling is normal, but based on the numbers you post, I would be very surprised if it was related to blood sugar problems.

Have other glands been tested- thyroid, adrenal, hypothalmus?

 
Old 06-01-2006, 06:40 PM   #14
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rickst29 HB User
Continuous Monitors, prescription required

First, I'll answer the question:

Because the CGMS systems involve DEEP stabbings, which stay in place for days and therefore MUST be sterile upon insertion, the FDA only approves them on the condition that an M.D. check that you are properly trained and understand what you;ve got, and how to use it (although a Diabetes educator, or Salesperson for the company might actually do most of the training).

Next, I'll say that you're looking at THE WRONG ONE!

here's a comparison page:
http://www.diabetes123.com/continuous.htm

The Abbott labs device is not yet approved, but the Dexcom is available: I USE IT! In comparison with the Medtronic/Minimed device,
  • it costs $500, instead of $2400 (sensors for both are $35 each)
  • it shows graphical output right on the device, this is a critical advantage
  • you don't need a 'docking station', just the device, a One-Touch Ultra meter for calibration, a sensor, the transmitter (clips into the sensor), and the cable for connecting the One Touch Ultra.
  • A dark secret: I've been using the same sensor for nearly 8 days, and it's STILL ACCURATE !!! So it costs less than $5 per day, not $12.

I'm a customer with no financial relationship to the company, but I did volunteer to visit a local PPO 'Diabetes Support' office where they USED TO use the Minimed Biographer for continuous testing. I think that they're gonna switch to this, because it's cheaper, the shallow ISF sensor is a lot less painful than the deep Biographer sensor, and the device gives instant feedback to the pt. while it runs.

If you've got a relationship with a decent Endo, then I think that he/she SHOULD acquire one of these and keep it in the office as a "loaner" device, just like the 'Diabetes Support' place where I live is gonna have one (or two, or maybe more. They're pretty cheap compared to biographers!) A prescription will still be required for the sensor(s), but I'm pretty sure that the device can be "loaned out", just like the Biographer. If your description of health history is honest, a prescription should be instantly forthcoming for acquiring and using one (or more) sensors with use of the "loaner" device and transmitter.

Feel free to copy my post and give it to your Endo. If she/he doesn't like me telling 'em that they make one of these available to you for at least one 3-day sensor cycle, tell 'em they're not keeping up with diabetes tech and WALK OUT, find a GOOD Dr. instead.

 
Old 06-03-2006, 03:57 AM   #15
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cjsmetal1 HB User
Re: Problem getting a diagnosis!

First: thanks to blondy2016h for the suggestion about testing thyroid, adrenal and hypothalamus.

Thyroid first: my free T4 is fairly low but not below the normal range. I would have expected from this a raised TSH level but that is below the middle of the range. A naturopath suggested from these results that I am hypothyroid and suggested a number of special supplements but when I researched these I found that I am already taking most of them. (I'm severely food intolerant - 30 foods and food elements - and have to supplement with various vitamins and minerals. Several endocrinologists have rubbished the suggestion that I have hypothyroidism.

Adrenals: Two endocrinologists have suspected that I have a pheochromocytoma (American spelling) but the first has eliminated this idea. The second suspects that it could be intermittent and we are awaiting the results of a blood test to prove or disprove it.

Hypothalamus: I have wondered for some time if there is a problem in this area as I have no sense of thirst (our younger son has the same problem) and I experience frequent but quite erratic episodes of extreme internal heat -yet still aware of the ambient temperature. These happen both at night and during the day, lasting between half an hour and nine hours. (I occasionally experience extreme cold episodes as well, but not as frequently.) None of the endocrinologists I have seen can understand how I can have no sense of thirst; I suspect they think I am mistaken. I tried an experiment some years ago and went without food or liquid for fifteen hours and did not feel either thirsty or hungry at the end. My wife would not let me carry on any further as she was understandably concerned!

Incidentally, I have had two three-day fasts to eliminate the possibility of an insulinoma, and didn't feel hungry at any time. Forty hours in to the first fast I experienced the worst hypo I've ever had but it self-limited after half an hour. As none of the nurses spotted that I was having it, the endocrinologist denied I had had one. That's why I had another three-day fast but, of course, I didn't have another hypo! I've mentioned the hypo to several endocrinologists to see if they could explain it. None of them could, and two asked me how I could be certain that it was a hypo. (Is cold sweat pouring off my face like a running tap, plus feeling very faint and weak sufficient evidence?)

Second: many thanks to rickst29 for the information about the Dexcom device. I will certainly investigate this. I knew that several manufacturers are trying to get into this market but I hadn't been aware that there was another machine available yet.

I have an appointment at the end of July to see an endocrinologist who I saw around five years ago but who wouldn't carry out any investigation until his suspicion of temporal lobe epilepsy had been eliminated. As it now has he has said he will see me again.

Again many thanks to all.

Cjsmetal

 
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