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Not newly diagnosed, but newly worse...

carandol

Well-Known Member
Messages
102
Type of diabetes
Type 2
Hi folks, this is my first post here, here goes...

Back in 2006 I was diagnosed with type 2 diabetes. I'm not overweight, my diet's pretty good (being vegetarian helps) and I get plenty of exercise as I don't have a car. But my dad and two of his brothers had diabetes, so it obviously runs in the family.

For a long time, I was controlling it with diet, but my blood sugar levels were creeping up. I was starting to feel slow and lethargic and lacking in energy, which I put down to getting older (I’m 51 in a couple of weeks), but checks at the doctors showed that my blood sugar was peaking in the mid-teens, so they decided I needed medication.

At first they put me on metformin, but I felt sick all the time, and frequently had an upset stomach. Then they put me on slow release metformin - same result.

After that, they put me on gliclazide and I got my blood sugar down to 9 (This was in July). I started to feel a lot more lively - I wasn't tired after a shopping trip, I felt like going for long walks, I felt like cooking elaborate meals after a long day's work. They decided to put my metformin up to 4 (80mg) tablets a day, in the hope of bringing my blood sugar down that bit further. I felt even better.

Then, over the last couple of weeks, I started feeling sluggish again, too tired to do anything beyond the bare necessities. It crept up on me slowly, so I didn't really notice at first. But one day, I had to walk somewhere, somewhere I normally walk every week with no trouble, and was so weary I got the bus. This isn't right, I thought, better check my blood sugar. It was 17! I was now worse than I had been before I started taking the pills!

I kept checking it over the week, and the lowest it got to was 14.5, and once it peaked at 20. I rang the doctor, and he suggested I see the diabetes nurse at the surgery this morning.

She is somewhat puzzled at why it's suddenly gone up, but obviously worried too. She says most of the diabetes medications either persuade your body to produce more insulin, or persuade your body to use the insulin more efficiently. If I'm on a full dose of gliclazide and my blood sugar's still that high, it implies that the insulin-producing cells in my pancreas have more or less given up. None of the medications they could prescribe would help with this, and the only solution is likely to be insulin injections.

She says people always talk about type 1 and type 2 diabetes, but there's a complicated bit in the middle between those two types, and I looks as if I've fallen into it.

She's made an appointment for me to see the nurse who teaches people about insulin injections. She's also going to speak to the diabetes specialist at the hospital to see what he thinks before I go to that appointment, to see if he's got any better ideas. In the meantime, I'm to cut out *all* sugar, cut down on carbohydrates, and do blood tests 3 times a day and ketone urine tests twice a day, and ring them immediately if it hits 20 again, or if I detect ketones in my urine.

Any thoughts or advice gratefully accepted!
 
Hi. Yes, it sounds like you may have LADA (late onset T1) also sometimes called type 1.5 and it's good your surgery is up to speed on all of this (rare!). They have given you good advice and it's possible insulin is not far away, sadly.
 
Hi carandol and welcome.

While you wait for the specialist I would do exactly as your nurse is suggesting cut out all sugar and reduce your starchy carbs (rice, pasta, potatoes, cereals, bread and other flour based products). Many of us do precisely that to get good levels. Many of us would also say its a shame we aren't automatically told to cut down on the starchy foods when we were first diagnosed as happens in other countries but that's a different story! If you cut the carbs down and see no real improvement after say 5 to 10 days its pretty indicative that your pancreas isn't producing insulin so you will likely need to go on insulin in my opinion. On the other hand many of us have found by reducing starchy carbohydrates dramatically that you can control your levels as you end up effectively end up matching your damaged but still somewhat functioning insulin production capability against the smaller amount of carbs you are eating. Remember it isn't just sugar that's makes level rise starchy carbs will make it rise nearly as badly as sugar. Sugar is just another type of carbohydrate. The "in the middle" stuff she is talking about is called T1.5 or LADA diabetes. It is an adult form of T1 which comes on gradually over time. Again if its that then you will need insulin. Hope that helps.
 
Thanks for the info, Diabell and xyzzy! I found out about LADA last night after writing the above post. One of the links led to some info that there's some evidence that gliclazide can actually hasten the onset of insulin dependency, which would explain why I went from getting better to getting worse, despite the dosage increase. I'll certainly make sure I ask them to test me for LADA if they don't suggest it themselves.

Lack of sugar doesn't bother me, but I'm going to have to do some serious looking into low carb diets and find out what I'll enjoy - I like my bread and potatoes! :(
 
Hi. Ref Gliclazide the research is inconclusive. Some HCPs think that Gliclazide wears out the pancreas by driving it to produce insulin. Others think that if the beta cells are dying anyway due to antibodies that LADA confirms then all Gliclazide can do is drive an ever decreasing number of cells. I'm on max dose and it has little effect and never did have much effect so I'm inclined to the view that it doesn't itself cause the pancreas to 'die' but that's just an opinion.
 
carandol said:
Thanks for the info, Diabell and xyzzy! I found out about LADA last night after writing the above post. One of the links led to some info that there's some evidence that gliclazide can actually hasten the onset of insulin dependency, which would explain why I went from getting better to getting worse, despite the dosage increase. I'll certainly make sure I ask them to test me for LADA if they don't suggest it themselves.

Lack of sugar doesn't bother me, but I'm going to have to do some serious looking into low carb diets and find out what I'll enjoy - I like my bread and potatoes! :(

No problem. You'll find plenty of people will advise you on low carb here so just ask. The evidence that gliclazide can hasten the progression is as Diabell says inconclusive. Inconclusive or not it's a reason I think low carb diets should be given as an option to the newly diagnosed as it can in a lot of cases they allow you to avoid going onto gliclazide.

Take care and keep asking questions.
 
I wish I had been told all about the carbs when I was first diagnosed nearly two years ago as I had similar symptoms and have put it down to eating too many carbs......
 
Hi,

I too have recently had a relapse. I was diagnosed type 1 in august, and put on 4x metformin. My bg went from 13.9 on diagnosis to 10.8 in the space of a month. I was due my next blood test in a couple of weeks, but a few weeks ago all the original symptoms came rushing back. I tested bg at home (using hubbys kit as I didnt have one) and I was getting levels of up to 24, never below 16 even with fasting. I saw the gp who put me on 40mg gliclazide as well as the metformin, then saw the nurse this week who upped that to 80mg gliclazide. She gave me a meter and when showing me how to use it, got a reading of over 22.

I have been told to test 3 times a day at home (though I am only allowed enough test strips to test 3 times a week on prescription, have to buy the rest myself!) and have to give her the results next week, followed by another full blood test in 10 weeks to see if the levels have come down. If not it will be insulin for me. My dad was insulin dependant type 2 and had a stroke caused by diabetes and died, I dont want to go the same way, I am only 34.
 
Hi stephiesut,

If you were diagnosed as a type I you really should have been put on insulin, probably not as much insulin as us long term users but on some intermittant insulin to help your pancreas during the honeymoon period. Goodness know why they put you on type II medication, since for type Is it's not about insulin resistance or the body's inability to use it but rather it's inability to produce it in the first place.

Keep a close eye on your sugars and talk to your consultant, see an endocrinologist, to be honest a diabetic nurse has as much in-depth knowledge as we patients do (generally speaking). Make sure you get some ketostrips and keep an eye out on your ketone levels, if they are high and your sugars are high too you need to take urgent action to avoid diabetic ketoacidosis. As a type I you really shouldn't be without access to insulin...

Frankie
 
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