16 October 2017
My Type 2 Diabetes Story
I am struggling the last few weeks especially the last few days. So I thought I would try to write down my diabetes tale and see if anyone can offer some advice, encouragement or solutions. Perhaps you have had a similar experience. Please bear with my rambling story. I am omitting some facts but hopefully the story will be coherent.
A few facts before I start. I am a man, going on 70, married, retired, have a severely disabled son in his 20’s. I have generally ignored my own health for the last 25 years.
I was diagnosed about 2003/04. I was told over the phone by a gp from my surgery that I had diabetes. I basically ignored it. For the next period of time, perhaps ten years or so, all I did was take Metformin, off and on, and thought that was it. I did not research it, I hid my head in the sand, ate whatever I wanted, gained weight, lost weight, went on diets, exercise kicks, but nothing really lasted. I knew I was overweight (ca. 20kg or so) but did not really experience much “pain” from having diabetes. I could not feel that I had diabetes, whatever that feels like.
In 2014 I moved several hours away from where I had been living for about 15 years. Therefore I changed surgeries. Following some new blood tests I was put on Gliclazide as well as Glucophage (time release Metformin). Again I basically ignored what diabetes is, how it was affecting me, and carried on as usual, gaining some weight, losing some weight, eating various diets and doing some exercise regimes and sometimes getting very little exercise.
In the summer of 2015 I went for an eye check up as my eyes were bothering me. After a few months I was scheduled to attend an eye clinic. I was diagnosed with retinopathy among other serious eye disorders. Less than 2 years ago I started a regimen of eye injections, sometimes every month and then every other month. As time went along I began to read up more about diabetes and became very frightened. I thought I had missed the boat, that it was too late to do anything and that I would suffer various organ deteriorations and end up blind, possibly unable to function fully as an independent person. I continue on the eye injection regime. One eye is improving and the other eye is getting worse, a real worry.
I was due for an operation on my lumbar spine. I had postponed it for various reasons. In January 2017 I decided to proceed with major spinal surgery. But I flunked the pre-op due to high blood sugar. No real advice was given at the hospital other than get it under control. I discussed the situation with the diabetic nurse and she gave me some advice. Sometimes I followed it and sometimes I ignored it. My HbA1c was 111. It is so easy to fool oneself!
A few months later I went for another pre-op. I again flunked it with a somewhat lower reading but the neurosurgeon said he could go ahead with the surgery anyway. He did tell me I had to reduce carbohydrates and get my blood sugar under control. He said he had Type 1 diabetes and that he understands the situation. For some reason, he was the first person to ever get through to me. I wish now many years ago some one had and that I had listened and I might not be in the situation I am in now.
My gp ran various tests. I came away from one meeting feeling that it was too late, my pancreas, kidneys, liver, heart, arteries, are all gone and I became extremely depressed.
After meeting with the surgeon I decided to actually start using the blood glucose monitor that had sat on a shelf for a month. I tried pricking my finger, did not do it so well, could not figure out how to use the little monitor and so went back to the nurse. She showed me, slowly, exactly what to do. I learned.
Then in July 2017 I went on a crash diet, started doing some reading from library books and the internet and decided that whatever was happening in my body I would try to help myself get better. If I was going to deteriorate I was not going to do it without a fight.
I eliminated almost all carbs, ate mostly protein and fat (cheese) and salads. I continued on my medicines. I was not getting much exercise. But my HbA1c started to improve getting down into the 80’s. But I was not losing any weight. I was about 85 kg having lost 10 kg during the intervening 10+ years.
Here I am skipping around a bit. Back at the end of last year, for some reason, I decided to stop taking all of my medicines. No Gliclazide or Metformin. I had been feeling rather achy, had become a couch potato and had all sorts of neuropathy, especially in my legs and feet. But I did not do much about it.
In the next 5 or 6 weeks I lost 5 kg, some of the neuropathy went away and thought this is much better. Then I went for my pre-op and my HbA1C was 111. That night I started taking my medicines again.
So I learned a few months afterwards with research that it is almost impossible to lose weight while on Gliclazides. During the time I stopped eating carbs and began using the monitor I was able to control my blood glucose readings. During the first week my readings were in the 12 -16 range. As the weeks went on the average dropped. After about 6 weeks of no carbs my average became in the 6 -7 range and I thought this was great. But I was not really losing any weight even though I had started taking walks most days.
I had a discussion with the nurse and gp and decided to stop taking Gliclazide to see what might happen. In the next month I lost about 5 kg and felt much better. It seemed that I might be finally on the right track. I started exercising more regularly, just simple walking, perhaps 2 – 5 km in less than an hour.
During the last 4 or 5 months I have seen 3 GPs, 8 nurses, a multitude of ophthalmologists, taken a day long NHS diabetes class, been to an all day diabetes conference, went to a diabetes centre in a different county and went to an all day eye conference.
During the time before I stopped taking Gliclazide my HbA1c had dropped to 58, a real improvement. Then just on the day I stopped the Gliclazide I had another blood test and it was 51. My goal was to get it below 48.
But slowly my blood sugar readings started creeping back up. My average went up to almost 7 and then to about 7.5 over the next month or so. Now the average for the last week has been about 8.
I had been scheduled to have the back operation in July but the NHS cancelled it the day before. It was re-scheduled for 1 September. During this month I did a great deal more reading and talking to physios and others. I decided to put my back operation off until I was very physically fit, had lost 10 – 15 kg, had my diabetes under control for at least 6 months with good blood readings and only then would I consider an operation. I had read that diabetes can create major recuperation issues and possibly even interfere with the operation itself. I do not want to chance it.
Here is where the story gets to the present. The last few weeks I have been mentally struggling with sticking on this strict low/no carb diet. I have started to eat small quantities of carbs: crackers with butter, dry roasted peanuts, nothing major. But my readings the last few days have been mostly between 8 and 10 with a few 7s (average the last week 8.2). I am wondering what is happening. I had a flu jab a week ago but did not feel sore or anything.
I feel like I have hit a runners wall. My weight has not changed the last month or so. It is about 80 kg. My exercise regime has tailed off. I am concerned that recent higher finger prick blood tests might mean my HbA1c will creep up the next time I have a test in a few weeks. I am craving carbs or just eating more regularly. I have little desire to cook or prepare protein low carb meals. My motivation is at a low point.
I read books and look at things on the internet and get even more confused about carbs and what a good diet is. Some people on the net or in books say no carbs at all is the way to go. The NHS says different. The Newcastle diet says eat fewer calories. The Atkins diet gives different info as do the many diabetic diets.
My overall blood glucose readings using my monitor are 7.2 after 243 finger prickings (ouch; my fingers are starting to hurt). My morning readings tend to be higher than those in the day or at dinner.
I would like to be off Metformin. I do not want to take gliptins. The more I read about medicines the less I want to take any. In New Zealand a reading below 8 is considered non-diabetic but here it is below 7. There do not seem to be world-wide standards or advice or diets or knowledge about diabetes. It is all very confusing.
I am getting so tired of having to pay attention to all these numbers, have been stressed out and do not know what stress does to me in relation to diabetes and want to improve my health.
My diet is generally protein (eggs – omelets, soft and hardboiled, ostrich, tofu, canned fish – sardines, mackerel, salmon; and fresh fish - plaice, haddock, cod; a variety of nuts most days); a grapefruit on most days; cheese of all sorts; a large salad everyday – lettuce, celery, radish, spring greens, peppers, tomatoes, olives, parmesan cheese, sunflower seeds, sauerkraut; apple cider vinegar, olive oil. I have not been measuring the amounts or calories though I keep a food diary. Sometime I want to give up all cheese or go vegetarian but where will the protein come from if I want to stay low carb. I think about yogurt with carbs and tomatoes and peppers and wonder if I should not have these either.
It is very difficult to get advice. There are so many websites and offers of newsletters or pills or books and so I am trying to sift through all this and figure out what is real or appropriate for me.
So here I am now. If any of you have similar stories or have advice to offer I am listening. Thanks for your time and patience.
My Type 2 Diabetes Story
I am struggling the last few weeks especially the last few days. So I thought I would try to write down my diabetes tale and see if anyone can offer some advice, encouragement or solutions. Perhaps you have had a similar experience. Please bear with my rambling story. I am omitting some facts but hopefully the story will be coherent.
A few facts before I start. I am a man, going on 70, married, retired, have a severely disabled son in his 20’s. I have generally ignored my own health for the last 25 years.
I was diagnosed about 2003/04. I was told over the phone by a gp from my surgery that I had diabetes. I basically ignored it. For the next period of time, perhaps ten years or so, all I did was take Metformin, off and on, and thought that was it. I did not research it, I hid my head in the sand, ate whatever I wanted, gained weight, lost weight, went on diets, exercise kicks, but nothing really lasted. I knew I was overweight (ca. 20kg or so) but did not really experience much “pain” from having diabetes. I could not feel that I had diabetes, whatever that feels like.
In 2014 I moved several hours away from where I had been living for about 15 years. Therefore I changed surgeries. Following some new blood tests I was put on Gliclazide as well as Glucophage (time release Metformin). Again I basically ignored what diabetes is, how it was affecting me, and carried on as usual, gaining some weight, losing some weight, eating various diets and doing some exercise regimes and sometimes getting very little exercise.
In the summer of 2015 I went for an eye check up as my eyes were bothering me. After a few months I was scheduled to attend an eye clinic. I was diagnosed with retinopathy among other serious eye disorders. Less than 2 years ago I started a regimen of eye injections, sometimes every month and then every other month. As time went along I began to read up more about diabetes and became very frightened. I thought I had missed the boat, that it was too late to do anything and that I would suffer various organ deteriorations and end up blind, possibly unable to function fully as an independent person. I continue on the eye injection regime. One eye is improving and the other eye is getting worse, a real worry.
I was due for an operation on my lumbar spine. I had postponed it for various reasons. In January 2017 I decided to proceed with major spinal surgery. But I flunked the pre-op due to high blood sugar. No real advice was given at the hospital other than get it under control. I discussed the situation with the diabetic nurse and she gave me some advice. Sometimes I followed it and sometimes I ignored it. My HbA1c was 111. It is so easy to fool oneself!
A few months later I went for another pre-op. I again flunked it with a somewhat lower reading but the neurosurgeon said he could go ahead with the surgery anyway. He did tell me I had to reduce carbohydrates and get my blood sugar under control. He said he had Type 1 diabetes and that he understands the situation. For some reason, he was the first person to ever get through to me. I wish now many years ago some one had and that I had listened and I might not be in the situation I am in now.
My gp ran various tests. I came away from one meeting feeling that it was too late, my pancreas, kidneys, liver, heart, arteries, are all gone and I became extremely depressed.
After meeting with the surgeon I decided to actually start using the blood glucose monitor that had sat on a shelf for a month. I tried pricking my finger, did not do it so well, could not figure out how to use the little monitor and so went back to the nurse. She showed me, slowly, exactly what to do. I learned.
Then in July 2017 I went on a crash diet, started doing some reading from library books and the internet and decided that whatever was happening in my body I would try to help myself get better. If I was going to deteriorate I was not going to do it without a fight.
I eliminated almost all carbs, ate mostly protein and fat (cheese) and salads. I continued on my medicines. I was not getting much exercise. But my HbA1c started to improve getting down into the 80’s. But I was not losing any weight. I was about 85 kg having lost 10 kg during the intervening 10+ years.
Here I am skipping around a bit. Back at the end of last year, for some reason, I decided to stop taking all of my medicines. No Gliclazide or Metformin. I had been feeling rather achy, had become a couch potato and had all sorts of neuropathy, especially in my legs and feet. But I did not do much about it.
In the next 5 or 6 weeks I lost 5 kg, some of the neuropathy went away and thought this is much better. Then I went for my pre-op and my HbA1C was 111. That night I started taking my medicines again.
So I learned a few months afterwards with research that it is almost impossible to lose weight while on Gliclazides. During the time I stopped eating carbs and began using the monitor I was able to control my blood glucose readings. During the first week my readings were in the 12 -16 range. As the weeks went on the average dropped. After about 6 weeks of no carbs my average became in the 6 -7 range and I thought this was great. But I was not really losing any weight even though I had started taking walks most days.
I had a discussion with the nurse and gp and decided to stop taking Gliclazide to see what might happen. In the next month I lost about 5 kg and felt much better. It seemed that I might be finally on the right track. I started exercising more regularly, just simple walking, perhaps 2 – 5 km in less than an hour.
During the last 4 or 5 months I have seen 3 GPs, 8 nurses, a multitude of ophthalmologists, taken a day long NHS diabetes class, been to an all day diabetes conference, went to a diabetes centre in a different county and went to an all day eye conference.
During the time before I stopped taking Gliclazide my HbA1c had dropped to 58, a real improvement. Then just on the day I stopped the Gliclazide I had another blood test and it was 51. My goal was to get it below 48.
But slowly my blood sugar readings started creeping back up. My average went up to almost 7 and then to about 7.5 over the next month or so. Now the average for the last week has been about 8.
I had been scheduled to have the back operation in July but the NHS cancelled it the day before. It was re-scheduled for 1 September. During this month I did a great deal more reading and talking to physios and others. I decided to put my back operation off until I was very physically fit, had lost 10 – 15 kg, had my diabetes under control for at least 6 months with good blood readings and only then would I consider an operation. I had read that diabetes can create major recuperation issues and possibly even interfere with the operation itself. I do not want to chance it.
Here is where the story gets to the present. The last few weeks I have been mentally struggling with sticking on this strict low/no carb diet. I have started to eat small quantities of carbs: crackers with butter, dry roasted peanuts, nothing major. But my readings the last few days have been mostly between 8 and 10 with a few 7s (average the last week 8.2). I am wondering what is happening. I had a flu jab a week ago but did not feel sore or anything.
I feel like I have hit a runners wall. My weight has not changed the last month or so. It is about 80 kg. My exercise regime has tailed off. I am concerned that recent higher finger prick blood tests might mean my HbA1c will creep up the next time I have a test in a few weeks. I am craving carbs or just eating more regularly. I have little desire to cook or prepare protein low carb meals. My motivation is at a low point.
I read books and look at things on the internet and get even more confused about carbs and what a good diet is. Some people on the net or in books say no carbs at all is the way to go. The NHS says different. The Newcastle diet says eat fewer calories. The Atkins diet gives different info as do the many diabetic diets.
My overall blood glucose readings using my monitor are 7.2 after 243 finger prickings (ouch; my fingers are starting to hurt). My morning readings tend to be higher than those in the day or at dinner.
I would like to be off Metformin. I do not want to take gliptins. The more I read about medicines the less I want to take any. In New Zealand a reading below 8 is considered non-diabetic but here it is below 7. There do not seem to be world-wide standards or advice or diets or knowledge about diabetes. It is all very confusing.
I am getting so tired of having to pay attention to all these numbers, have been stressed out and do not know what stress does to me in relation to diabetes and want to improve my health.
My diet is generally protein (eggs – omelets, soft and hardboiled, ostrich, tofu, canned fish – sardines, mackerel, salmon; and fresh fish - plaice, haddock, cod; a variety of nuts most days); a grapefruit on most days; cheese of all sorts; a large salad everyday – lettuce, celery, radish, spring greens, peppers, tomatoes, olives, parmesan cheese, sunflower seeds, sauerkraut; apple cider vinegar, olive oil. I have not been measuring the amounts or calories though I keep a food diary. Sometime I want to give up all cheese or go vegetarian but where will the protein come from if I want to stay low carb. I think about yogurt with carbs and tomatoes and peppers and wonder if I should not have these either.
It is very difficult to get advice. There are so many websites and offers of newsletters or pills or books and so I am trying to sift through all this and figure out what is real or appropriate for me.
So here I am now. If any of you have similar stories or have advice to offer I am listening. Thanks for your time and patience.
