- Messages
- 13
- Type of diabetes
- Type 1
- Treatment type
- Insulin
I would like to explore further, whether we are getting the correct insulin dosages that our bodies require or whether drug companies are doing enough to provide better guidelines. I am sharing my story on what I have gone through so far with adjusting my dosages and how hard I have found it to get the optimal levels over the years.
When I was first diagnosed, I remember that the doctor put me on 8 units of insulin in the morning and the same amount before bedtime. If I remember correctly, the brand of insulin was Lantus. They then sent me to the dietician, but she did not give me any specific help as to how to manage my diabetes. I felt that it was pretty much generic advice saying that I should be eating healthy food just like people without diabetes. She suggested that legumes would be a good meal for me and nothing was forbidden. They pretty much told me to eat as much as I wanted, what I wanted and when I wanted. If you fancy sugary stuff, eat rich tea or digestive biscuits and it is ok to eat birthday cakes and so on if it is around . I think they were all a bit naive, thinking that this magical insulin will sort everything out, even random birthday cakes and rich tea biscuits and so on to be honest. I did not know any better, so I tried to suck in as much information as they provided. This was a specialist diabetic unit, and all their patients were diabetics. I have found the information provided confusing and perhaps not truthful, over the years with living type 1 diabetes.
I think they wanted to paint a relaxed picture with my diet and so on. Diabetic nurse also assured me that the cure will be available in the next 5 to 10 years and I should stay strong until then. This was 15 years ago . I remember requesting a diet plan but they said they did not have a diet as such, and if they gave it to the diabetic people no one really would follow it anyway.
I think around that time carb counting was not available or they did not bother to mention it to me. They coupled me with a diabetic nurse; she was taking me to the dietician, doctors, nurses, and around the hospital to get some tests done. God knows what my sugar level was as the whole day was a bit blurry and scary. After initial meetings with the doctor and dietician they gave me a couple of leaflets and sent me back home. Now, I had to figure out all this new illness and my mind wasn’t in the best shape to deal with it, learn everything overnight by myself and conquer this nightmare illness. I still don’t how to manage it properly after 15 years, as I have found out that even doctors and dieticians do not agree with each other, and the quality of advice generally depends on the quality of the doctors and dieticians that you go to see.
I am so surprised that they have managed my diabetes like this for years; in total I was injecting myself 16 units of some kind of long/medium acting insulin. So, why were they suggesting that I could eat carb rich meals with digestive biscuits and so on? Perhaps, if they had explained the carbs and told me to avoid them, it might have worked but certainly not with the biscuits and so on as there was no short acting insulin to cover the peaks. Anyhow, I continued with this dosage for a couple of years, but my sugar levels were never controlled. They fluctuated up to mid 30mmol on a daily basis. Eventually the doctor agreed that I should be on Humalog as well, in addition to the twice a day injections, and overnight my insulin intake increased from 2 times a day to 5 times a day.
I don’t remember receiving any specific education regarding how I should be counting carbs and adjusting my ratio. I don’t think I received any education on the matter. I am sure they sent me back to the dietician, but she said something along the lines of trying to eat healthy, nothing is forbidden and so on. Pretty much the same as before, the rich tea biscuit nonsense .
Over the years my insulin levels have changed significantly, and while I was living in the UK, I ended up with 16 units of Levemir in the morning and 16 units before bedtime and Humalog with each meal. I used to inject up to 10 to 12 units of Humalog with lunch and dinner on a regular basis, generally guessing the amount on the plate as I never received a proper education from the dieticians, who I had seen over the years. However, once I went to the emergency unit and was told that I should never use that much of Humalog as it would give me dangerous hypos. The doctor suggested that the best way to manage my sugar levels would be by increasing my background insulin and inject 5 or 6 units of Humalog with each meal. He said that long acting insulin would not give me hypos but with high units of Humalog such as 10 I would find myself on the floor.
My sugar levels still weren’t well controlled over the years, it was up and down many times a day and I could not put a finger on what caused those random highs and lows. I generally eat healthy food including plenty of vegetables, but somehow my body still surprises me with crazy readings at times.
Anyhow, my partner and I decided to move to Malta hoping for a more relaxed life and a better control over my sugar levels. However, it turned out that they did not sell Levemir in Malta and I needed a replacement. Although I went to the private GPs a couple of times, no one really could confirm the correct dosage and the replacement. In the end I was hospitalised as it took so long to see a Diabetic specialist. After staying in the hospital, I finally got the correct replacement as Lantus and they put me on 27 units once a day, and 3x6 Humalog and discharged me. However, I started to have hypos over the following weeks and Lantus was then reduced to 24 and then 22 and then 18 and then 14 and then it went back up to 16. My 6 units of Humalog insulin regimen also changed to 1:10 ratio and eat as much as you want and adjust your insulin accordingly.
These dosages seem to contradict the manufacturers’ advice. According to the drug dosage calculation and advice from the manufacturer, based on my weight I should be on 11 or 12 units of Lantus. The calculation is done by multiplying your body weight with 0.2 (kg x0.2= units) and it gives you the amount of Lantus you should be having. Apparently, Lantus should also be 1/3 of the total daily insulin requirements.[1] This is however different from the emergency doctor’s advice, who suggested that a big chunk of the insulin should come from Lantus and small amounts from Humalog. In addition, even the specialist gave me 27 units of Lantus and 3x6 Humalog. Again, this does not comply with the manufacturer’s guidelines at all. In fact, since I have been diagnosed I have never even once been put on the recommended dosage, which is a bit suspicious as to on what basis doctors decide to put you on different dosages.
I also remember asking for an insulin pump, but they have refused me over the years. Some healthcare professional said that it is difficult to manage and some people die from it in their sleep due to lack of education and so on. Some said my sugar level is not well controlled to have it and some said it is too expensive for the NHS and they would not authorise it. It looks like people who are on a pump therapy are a bit better controlled and not sure if money is the strong factor when they deny these treatments to some but not to the others.
My body weight is generally stable, it is around 54 to 58 kg, but my drug dosages have changed significantly. To start with I was on 16 units in total, but a couple of years later I ended up with combined 30/40 units of insulin each day.
I feel that diabetes is one of the most misunderstood, hard to manage and understudied diseases, and that more research and cure are well overdue. Millions are suffering each day until the day they die without a break from daily injections. Every person is left to fight their own battle with their doctors, and it looks like there are some winners but a lot of patients lose. I am hoping that this will change soon and research and more focus will be given to diabetes. People should also be made more aware so that they get the correct diagnoses early.
The above writing is based on my experience with type 1 diabetes. Always consult your physician before making any changes to your diabetes management plan.
You can also follow our journey on Twitter.
[1] http://www.lantus.com/hcp/dosing-titration/dosing-calculator
When I was first diagnosed, I remember that the doctor put me on 8 units of insulin in the morning and the same amount before bedtime. If I remember correctly, the brand of insulin was Lantus. They then sent me to the dietician, but she did not give me any specific help as to how to manage my diabetes. I felt that it was pretty much generic advice saying that I should be eating healthy food just like people without diabetes. She suggested that legumes would be a good meal for me and nothing was forbidden. They pretty much told me to eat as much as I wanted, what I wanted and when I wanted. If you fancy sugary stuff, eat rich tea or digestive biscuits and it is ok to eat birthday cakes and so on if it is around . I think they were all a bit naive, thinking that this magical insulin will sort everything out, even random birthday cakes and rich tea biscuits and so on to be honest. I did not know any better, so I tried to suck in as much information as they provided. This was a specialist diabetic unit, and all their patients were diabetics. I have found the information provided confusing and perhaps not truthful, over the years with living type 1 diabetes.
I think they wanted to paint a relaxed picture with my diet and so on. Diabetic nurse also assured me that the cure will be available in the next 5 to 10 years and I should stay strong until then. This was 15 years ago . I remember requesting a diet plan but they said they did not have a diet as such, and if they gave it to the diabetic people no one really would follow it anyway.
I think around that time carb counting was not available or they did not bother to mention it to me. They coupled me with a diabetic nurse; she was taking me to the dietician, doctors, nurses, and around the hospital to get some tests done. God knows what my sugar level was as the whole day was a bit blurry and scary. After initial meetings with the doctor and dietician they gave me a couple of leaflets and sent me back home. Now, I had to figure out all this new illness and my mind wasn’t in the best shape to deal with it, learn everything overnight by myself and conquer this nightmare illness. I still don’t how to manage it properly after 15 years, as I have found out that even doctors and dieticians do not agree with each other, and the quality of advice generally depends on the quality of the doctors and dieticians that you go to see.
I am so surprised that they have managed my diabetes like this for years; in total I was injecting myself 16 units of some kind of long/medium acting insulin. So, why were they suggesting that I could eat carb rich meals with digestive biscuits and so on? Perhaps, if they had explained the carbs and told me to avoid them, it might have worked but certainly not with the biscuits and so on as there was no short acting insulin to cover the peaks. Anyhow, I continued with this dosage for a couple of years, but my sugar levels were never controlled. They fluctuated up to mid 30mmol on a daily basis. Eventually the doctor agreed that I should be on Humalog as well, in addition to the twice a day injections, and overnight my insulin intake increased from 2 times a day to 5 times a day.
I don’t remember receiving any specific education regarding how I should be counting carbs and adjusting my ratio. I don’t think I received any education on the matter. I am sure they sent me back to the dietician, but she said something along the lines of trying to eat healthy, nothing is forbidden and so on. Pretty much the same as before, the rich tea biscuit nonsense .
Over the years my insulin levels have changed significantly, and while I was living in the UK, I ended up with 16 units of Levemir in the morning and 16 units before bedtime and Humalog with each meal. I used to inject up to 10 to 12 units of Humalog with lunch and dinner on a regular basis, generally guessing the amount on the plate as I never received a proper education from the dieticians, who I had seen over the years. However, once I went to the emergency unit and was told that I should never use that much of Humalog as it would give me dangerous hypos. The doctor suggested that the best way to manage my sugar levels would be by increasing my background insulin and inject 5 or 6 units of Humalog with each meal. He said that long acting insulin would not give me hypos but with high units of Humalog such as 10 I would find myself on the floor.
My sugar levels still weren’t well controlled over the years, it was up and down many times a day and I could not put a finger on what caused those random highs and lows. I generally eat healthy food including plenty of vegetables, but somehow my body still surprises me with crazy readings at times.
Anyhow, my partner and I decided to move to Malta hoping for a more relaxed life and a better control over my sugar levels. However, it turned out that they did not sell Levemir in Malta and I needed a replacement. Although I went to the private GPs a couple of times, no one really could confirm the correct dosage and the replacement. In the end I was hospitalised as it took so long to see a Diabetic specialist. After staying in the hospital, I finally got the correct replacement as Lantus and they put me on 27 units once a day, and 3x6 Humalog and discharged me. However, I started to have hypos over the following weeks and Lantus was then reduced to 24 and then 22 and then 18 and then 14 and then it went back up to 16. My 6 units of Humalog insulin regimen also changed to 1:10 ratio and eat as much as you want and adjust your insulin accordingly.
These dosages seem to contradict the manufacturers’ advice. According to the drug dosage calculation and advice from the manufacturer, based on my weight I should be on 11 or 12 units of Lantus. The calculation is done by multiplying your body weight with 0.2 (kg x0.2= units) and it gives you the amount of Lantus you should be having. Apparently, Lantus should also be 1/3 of the total daily insulin requirements.[1] This is however different from the emergency doctor’s advice, who suggested that a big chunk of the insulin should come from Lantus and small amounts from Humalog. In addition, even the specialist gave me 27 units of Lantus and 3x6 Humalog. Again, this does not comply with the manufacturer’s guidelines at all. In fact, since I have been diagnosed I have never even once been put on the recommended dosage, which is a bit suspicious as to on what basis doctors decide to put you on different dosages.
I also remember asking for an insulin pump, but they have refused me over the years. Some healthcare professional said that it is difficult to manage and some people die from it in their sleep due to lack of education and so on. Some said my sugar level is not well controlled to have it and some said it is too expensive for the NHS and they would not authorise it. It looks like people who are on a pump therapy are a bit better controlled and not sure if money is the strong factor when they deny these treatments to some but not to the others.
My body weight is generally stable, it is around 54 to 58 kg, but my drug dosages have changed significantly. To start with I was on 16 units in total, but a couple of years later I ended up with combined 30/40 units of insulin each day.
I feel that diabetes is one of the most misunderstood, hard to manage and understudied diseases, and that more research and cure are well overdue. Millions are suffering each day until the day they die without a break from daily injections. Every person is left to fight their own battle with their doctors, and it looks like there are some winners but a lot of patients lose. I am hoping that this will change soon and research and more focus will be given to diabetes. People should also be made more aware so that they get the correct diagnoses early.
The above writing is based on my experience with type 1 diabetes. Always consult your physician before making any changes to your diabetes management plan.
You can also follow our journey on Twitter.
[1] http://www.lantus.com/hcp/dosing-titration/dosing-calculator
Last edited by a moderator: