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Mystery Diagnosis

J

jamesda123

Member
Messages
5
Type of diabetes
Other
Treatment type
Diet only
Hi,

I've recently been diagnosed, but I seem to have puzzled the doctors in terms of what type of diabetes I have. I'm male, in my early forties with a slim build and slightly underweight for my height/age. I always ate fairly healthily with plenty of fruit and vegetables, and no crisps/soft drinks etc, although I did eat 50g of dark chocolate maybe 4 times a week.

On my first test, my fasting blood sugar was 13.9. Subsequent fasting tests showed it to be in the 8-10 range. My last HbA1C was 56 after 4 months of a reduced sugar/carb diet and more exercise. So definitely diabetes.

But what type?

As well as highs, I'm getting low readings as well. For example, I ate 3 Oatibix for breakfast one morning, and got a reading of 19 after two hours. So that isn't good.

But then if I eat a proper lunch, including 4 slices of bread (Burgen) and meat/salad/yogurt, and then go for a 30 minute walk after 90 minutes, and then measure my levels at two hours, my blood sugar is right down. I've had readings of 4.4, 4.6 and other low values. It seems that the exercise, if done at the right time, results in a sudden plunge in sugar levels, sometimes to the point that I feel a bit dizzy. I'm not on any medication except statins just now.

I've been tested for the the antibodies you sometimes get in Type 1 sometimes, and they are negative. So are keytones. I've had a C-Peptitde test and this shows negative for MODY. This is despite a family history of similar odd behaviour with blood sugar, particularly my father who exhibits these sudden drops in sugar as well. The doctors describe me as a "fascinating" case, which is all very well, but doesn't really help me!

Has anybody else had anything similar?
 
The main similarity is that I too can walk off the sugar. Nursie suggested a morning walk and that is now my habit. There are woods nearby so I can spend an hour or so walking there. One morning after the walk I measured 3 which is a record although slightly higher readings have often been achieved.

I have turned this to my advantage. First of all I now only take one reading a day at 2 hours after breakfast/walking. With this lowish reading I know what sort of a lunch to have without messing it all up.
 
Yes me too. Always do moderate exercise to work off the sugar. However, I do this all times I eat. You seem to eat a lot of carbs with 3 oatabix and 4 slices of bread. I think they would send me as high as you

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The 3 Oatibix was a bit high and I'm avoiding them all together now. However, I seem to do much better with 4 slices of Burgen Soya and Linseed (400g size) which is 36g of carb in total, and the GI of this bread is only 49.

It's a balance for me trying to get enough calories - I don't think I've ever managed to eat the recommended 2500 - I usually end up closer to 1500 but am just about maintaining my weight. The dietitian told me to try and put some more weight on.

Anyway, good to know that other people have this pattern as well.
 
I eat one slice a day but I am trying to lose another 2 stone. I find rye bread is even better

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What diet are you wanting to follow? I eat LCHF which works for me. I don't eat rice, pasta, bread and potatoes so no toast for breakfast. I do have bacon or sausage and eggs with mushrooms and tomatoes. More info to be found at www.dietdoctor.com good luck!
 
jamesda123 said:
Hi,

I've recently been diagnosed, but I seem to have puzzled the doctors in terms of what type of diabetes I have. I'm male, in my early forties with a slim build and slightly underweight for my height/age. I always ate fairly healthily with plenty of fruit and vegetables, and no crisps/soft drinks etc, although I did eat 50g of dark chocolate maybe 4 times a week.

On my first test, my fasting blood sugar was 13.9. Subsequent fasting tests showed it to be in the 8-10 range. My last HbA1C was 56 after 4 months of a reduced sugar/carb diet and more exercise. So definitely diabetes.

But what type?

As well as highs, I'm getting low readings as well. For example, I ate 3 Oatibix for breakfast one morning, and got a reading of 19 after two hours. So that isn't good.

But then if I eat a proper lunch, including 4 slices of bread (Burgen) and meat/salad/yogurt, and then go for a 30 minute walk after 90 minutes, and then measure my levels at two hours, my blood sugar is right down. I've had readings of 4.4, 4.6 and other low values. It seems that the exercise, if done at the right time, results in a sudden plunge in sugar levels, sometimes to the point that I feel a bit dizzy. I'm not on any medication except statins just now.

I've been tested for the the antibodies you sometimes get in Type 1 sometimes, and they are negative. So are keytones. I've had a C-Peptitde test and this shows negative for MODY. This is despite a family history of similar odd behaviour with blood sugar, particularly my father who exhibits these sudden drops in sugar as well. The doctors describe me as a "fascinating" case, which is all very well, but doesn't really help me!

Has anybody else had anything similar?
Click to expand...
A c-peptide test doesn't necessarily 'show negative for MODY' -- a normal c-peptide fasting result is still compatible with some forms of MODY. The diabetes clinic that I go to did all the possible tests ,sent off results to Exeter etc, but in the end 'MODY X' (I.e. suspected MODY caused by as yet unidentified gene) is the best they came up with. You may just have to get used to never having a definitive diagnosis, and settle for being An Enigma, and just follow whatever combination of diet, exercise and meds works for you. Good luck!
 
Can you eat some fat of sone description to bump up your intake of calories? Not huge qtys but just a little bit more.. Ie a bit of cream or full fat milk?

I too am slim, but not underweight, mainly muscle from my work and really needed more fat in my diet as I dont eat excess of anything really. I do eat everything if I want to because as a type 1 I can, but I just rarely want to eat carbs or fat.
Fat qty was my downfall. I wasnt having enough. So now before I do my work I have two single cream coffees and full fat milk the rest of the day. Initially this has made me feel more tired to be honest, but now I'm back to more energy.

At levels of 4 after exercise like walking... This just proves to me that so many people need to do more walks and exercise... Nothing wrong with going lower but just have a snack whilst you adapt to when and how you get these lower levels.

You are certainly working out for yourself which foods give you rises, so best to avoud them in the future. You will be suprised at what foods do what to your body. More fat in my diet has stabilised my bloods a lot whilst hard physically digging etc in my gardening job.

You have done so well to establishing high/lows. The more you list them and discuss with nurses, gp's or consultants the more chance of getting a better level of bg and weight. A diagnosis of a certain type of diabetes helps the brain to be able to cope and google for help... But, just having diabetes without a confirmed type has set the ball rolling with you to monitor your bg's and weight and foods, so well done you.

Log your readings and foods etc and activitys.. You'll self manage yourself much better than a GP monitoring you... No matter what type od diabetes you have!!





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Thanks again for the comments. Scandichic is right that the test doesn't show negative for MODY, but the consultant just said it was more consistent with Type 1. But then other factors don't suggest type 1. It was tested at Exeter as well, and there may be some more tests to do.

I'm gradually finding a few more things to eat and getting the calories up to the right sort of level. Breakfast is the most difficult, because having eaten cereal for over 40 years, it's harder to change a routine.

Desidiabulum - you're right about the brain wanting a definite diagnosis to try and cope with things, but I'm beginning to accept that it might never happen, so I just need to look at it from day-to-day to get all the levels sorted as best as possible.
 
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