Insulin Dosages

[Diabetes Yoyo]

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

 

[donnellysdogs]

Gosh, I didn't realise that 15 years ago instructions for type 1's had changed so much since I was diagnosed 30 years ago. I was told basically my only treat would be a digestive ir two rich tea before bed or some cake that my mum would make me with some sweetener. I hated the regime I thought i was going to have to live with. It was so strict, I can actually see why the NHS relaxed their education .. A little bit..

Nowadays it isn't seen as a restrictive diet for life because of all the differings ways to medicate especially with the pump..

However, I can't agree with your thoughts on medication, as one size does not fit all and some people are on really small doses and some on much larger. That is solely because we are individuals and during our lives our lifestyles change so much and so of course I medication does. Hormones, other illnesses, sedentery living, so many cars-people walk less nowadays-although they walk miles shopping!!

I personally think that our whole body mechanisms and metabolism change throughout our lives. Else we would all be 19 going on 90.. I could still be wrinkle free!!

I certainly don't blame medical manufacturers for anything, the reverse, if it wasn't for the medical research, the slowly changing meds then I would have been dead a long time ago. I think the junk food, wrong diet advice has more to do with diabetic problems than the medic companies..


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[donnellysdogs]

The concern over pump therapy you express is concerning, however it is an option now being given to newly diagnosed under 12's more easily than before.

The individual CCG's, NHS, NICE and governments should recognise that it is an effective tool and not be on a postcode lottery. However, do not be under the thought a pump is a easy option. It isn't. The improved control to me is only gained from the diabetic user doing a LOT of hardwork to gain it, and that aspect is on going...

Peesonally I did try to look after my levels on mdi, and although 4 years on I am relaxed with using my pump.. I test more, I change my rates more, I have to detach pre shower/bath/jacussi/swim etc. i still have to bolus, albeit with a handset, we get worse problems if the pumps get occlusions...and always have to pack more for days out, holidays etc).

Control on a pump is better from my aspect because of the ability of the pump to adjust rates more, BUT the User also has to put in a lot of effort to.

I don't personally understand why they can immunise against so many disesases but haven't got a cure for diabetes. I wonder if its because the drug companies make too much money from diabetes to want a cure. Shame, because diabetes will longterm crash the provision of medical care in our country (uk) and worldwide. Its not sustainable for medic places to have the number of diabetics increasing as they are currently. Something is going badly wrong.


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[phoenix]

The lantus calculator that you mention is only a starting point. For safety that has to be low particularly in people who have only just been diagnosed with T1. The titration guide accessed from the side tab suggests adjusting by 2 units every 3 days or by 1 unit every day until the fasting glucose target is reached. There is no fixed amount for any individual because it depends on many things eg: age, hormones, gender, activity levels, insulin sensitivity. other conditions .
It won't remain the same over the years either , not even through the year (for example many people find that a change of seasons requires a change of basal amount) This is the same whether you use a pump to provide the basal or a long acting insulin.
This article from Gary Scheiner explains the fundamentals about basal insulin.
http://integrateddiabetes.com/Articles/insu/basal insulin for friends with diabetes.pdf

 

[hale710]

Funny you mention this, I wrote a blog on it this morning! Many people don't take the "guideline" amount if insulin


Blogging at drivendiabetic.wordpress.com

 

[yingtong]

Yoyo I concur with your findings I have been using insulin for 50+ years and many different regimes,basically I have had to work out my own regime and over the past 20 years have sorted this out myself and I have very good control.I have very little Diabetic related problems,my only major problem is that I no longer recognise Hypos,which has taken 5years to come on fully!


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[Daibell]

Hi. Yes, stress and medication can have a big impact. I have been stable for the last year but just started a new drug and some minor surgery and my insulin need has leapt 30-40%. There is a lot of mis-information out there and inevitably each GP/DN has their own views and knowledge. Dietary advice has been very bad in the Western world for many years but is finally turning round. Carbs are the problem so they need to be kept sensibly low. Overall the most flexible regime is Basal/Bolus and getting the Basal right and then the Bolus. Everyone needs different levels of insulin, so the guidelines are merely a start point

 

[AlexMBrennan]

Funny you mention this, I wrote a blog on it this morning! Many people don't take the "guideline" amount if insulin


Blogging at drivendiabetic.wordpress.com

Do you have a better plan? Since you don't like using the rule-of-thumb, you must think that we'd be better off injecting random amounts of when stated on insulin.

 

[hale710]

Do you have a better plan? Since you don't like using the rule-of-thumb, you must think that we'd be better off injecting random amounts of when stated on insulin.

That's not what I said.

I just stated that very few people end up on the amounts that their doctor thinks they should be. My doctor started me on 4u per day and I was low constantly. Trial and error through testing is the only REAL way to determine your insulin requirements.

My point is regarding pigeon holing people. We are all diabetics yes, but we're also individuals and as with all conditions our treatment shouldn't be exactly the same for everyone!


Blogging at drivendiabetic.wordpress.com

 

[Lucie75]

Gosh, I didn't realise that 15 years ago instructions for type 1's had changed so much since I was diagnosed 30 years ago. I was told basically my only treat would be a digestive ir two rich tea before bed or some cake that my mum would make me with some sweetener. I hated the regime I thought i was going to have to live with. It was so strict, I can actually see why the NHS relaxed their education .. A little bit..
Nowadays it isn't seen as a restrictive diet for life because of all the differings ways to medicate especially with the pump.

Me too Donnellysdogs. I remember being told as an 8 year old (also 30 years ago) that I'd never be able to eat chocolate again. I was devastated. It wasn't until recently that I realised I can have anything if I bolus correctly for it.

 

[Dillinger]

Do you have a better plan? Since you don't like using the rule-of-thumb, you must think that we'd be better off injecting random amounts of when stated on insulin.

Ah, Mr Brennan, always a pleasure. I think this lovely spring weather is making you too cheerful if anything?

 

[Spiker]

I'm very surprised that at T1 diagnosis 15 years ago, you were put on Lantus only, with no basal insulin at all. Or did they initially diagnose you as T2? That would make more sense.

As others have noted, manufacturers recommendations are a starting point only, you always have to modify that based on experience and your meter. There is no one size fits all and no medical professional or other can say '12 Lantus is too little' or '12 Humalog is too much' for any given person at any given time. Insulin requirements actually change hugely from individual to individual and from time to time. Expecting any medical professional to advise the correct dosage, other than as a conservative starting point, is unrealistic.

I suppose the lesson here is that we must all take responsibility for our own insulin dosage and not depend on anyone else to do it for us. In this matter we are very much all individuals.

 

[Dillinger]

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 think the education given to pretty much all diabetics is a joke. A pretty sick joke at that.

I would say the most useful guidance I've seen recently comes from the book Think Like A Pancreas by Gary Sheiner and Dr Bernstein's Diabetes Solution.

This forum has also produced some very interesting takes on the subtleties of insulin control; i.e how the liver can release glycogen irrespective of what you eat and therefore even for a no-carb meal of a certain size you'd still need insulin. Who would have thought it eh?

The fluidity of basal/bolus requirements is something that constantly surprises me; for instance just recently my day time basal requirements have gone down whilst my night time basal have gone up. Who knows why that has happened? My morning bolus is also comparatively much higher than my afternoon/evening one.

Best

Dillinger

 

[Diabetes Yoyo]

I'm very surprised that at T1 diagnosis 15 years ago, you were put on Lantus only, with no basal insulin at all. Or did they initially diagnose you as T2? That would make more sense.

As others have noted, manufacturers recommendations are a starting point only, you always have to modify that based on experience and your meter. There is no one size fits all and no medical professional or other can say '12 Lantus is too little' or '12 Humalog is too much' for any given person at any given time. Insulin requirements actually change hugely from individual to individual and from time to time. Expecting any medical professional to advise the correct dosage, other than as a conservative starting point, is unrealistic.

I suppose the lesson here is that we must all take responsibility for our own insulin dosage and not depend on anyone else to do it for us. In this matter we are very much all individuals.

I was diagnosed with T1

 

[noblehead]

Remember the fixed insulin doses well, not much scope to adjust insulin and if you went low after eating you were told to have a few more carbs with your meal. By far basal/bolus is better when it comes to having a greater flexibility at meal times, you can eat as little or as much as you want and even skip meals should you choose.

As regards to basal doses, I was told and have read that it should make up around 40-50% of your TDD, currently I inject 18 units of Lantus and anywhere between 14-18 units of Novorapoid so it's not too far away.

 

[Jaz253]

Hi! I've been a type 1 for23 years. Youll see doctors not always are properly informed about this condition they are basically to keep you updated about ur analysis and follow ups. You need to learn to listen to ur body it tells u when ur BS is high or low. But regretfully unless u can calculate the impact of food on ur BS in order to know how much insulin to inject, as someone wrote before, it is mandatory to take a journal so u alone can know how much basal and fast acting insul. u need.
I would say changing the current dose increasin or lowerin by 2 units at the time depending how are ur levels

 

[Spiker]

Hi! I've been a type 1 for23 years. Youll see doctors not always are properly informed about this condition they are basically to keep you updated about ur analysis and follow ups. You need to learn to listen to ur body it tells u when ur BS is high or low. But regretfully unless u can calculate the impact of food on ur BS in order to know how much insulin to inject, as someone wrote before, it is mandatory to take a journal so u alone can know how much basal and fast acting insul. u need.
I would say changing the current dose increasin or lowerin by 2 units at the time depending how are ur levels

Listen to your body, yes, but listen to your meter even more so.
Good advice there.

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[AdamAdam]

Hello Sir,
Can I say I share a very familiar story to yourself. My best advice is read Dr Bernstein Diabetes Solution and attatch your self to real Dr's that can help you,

 

[Diabetes Yoyo]

Hello Sir,
Can I say I share a very familiar story to yourself. My best advice is read Dr Bernstein Diabetes Solution and attatch your self to real Dr's that can help you,

I am not sir

 

[benjygirl]

I have been a Type 1 for only 3 years and I have managed by myself to have a good control - or so I thought. Last year my Hba1c was 6.5 and I was praised for my good control. I had my annual review for this year and again my Hba1c was 6.5. I then had a phone call from my GP to tell me that this was much too low and I was to use less insulin . (I am on Novorapid and Levimir. ) She wants me to have BS readings above 8 !! I have a feeling that she really doesn't understand diabetes at all. I phoned my DN to ask her opinion and she told me to do as the GP said. IS an Hba1c reading of 6.5 in your opinions too low ?