20 years of type 1 getting desperate

[tuzvihar]

Hello there,

I am a 30 year old male, diagnosed with type 1 diabetes over 20 years ago, and luckyle I have no complications so far. I am 175cm high and weigh 82kg, I have a regular body, not obese or chubby, altough I could lose a few kilos.
During my 20 year carreer I have managed to get fairly good HgbA1C (5-6-7%) and glucose levels (4-7mmol/l), up until recently. In the last few moths, almost half a year my blood glucose started to spiral out uncontrollably. Altoguh my current HgbA1c levels aren't super high (7-8%), my glucose readings are anywhere between 2 and 22mmol/l.
When I started to notice this trend, I only had some slightly higher readings before dinner, finally leadin to, where the reading was always above 10mmol/l quite often in the 15 range. Now I have a really knowledgable diabetes doctor, but he is rather busy having a lot of patients. When we saw this trend, he advised to change my insulin regime, which should had allowed me a better control, but in fact it did not.
I probably don't have to say, that I had been taking insulin from day one, as I was diagnosed as a child. We consult with my doctory every wee now, but I am getting quite desperate as the situation with the swinging blood sugars is still an issue for me.
Currenlty I take Novorapid for bolus and Lantus for base, 9N-7N-8N-20L, for breakfast , lunch and dinner respectively. The amount of carbohydrates I eat is 35-60-40 respectively.

I am really getting desperate to remedy the situation the quickest possible, so I'd like to take any advice,if someone has been in a similar situation before.

Thanks

 

[donnellysdogs]

What adjustments to insulin have you already tried?


Sent from the Diabetes Forum App

 

[noblehead]

Your not on high doses of insulin for the carbs you eat as I was going to suggest changing insulins, you should start with some basal testing and once your sure your basal insulin is right you can look at your meal-time ratio's.

 

[robert72]

Do you keep a diary?

Have you changed the type of food you eat?

Do you weight your portions or estimate?

 

[Daibell]

Hi. Do you currently carb count or have fixed carbs at each meal. It's possible your insulin ratio has changed?

 

[Charles Robin]

Hello there,

I am a 30 year old male, diagnosed with type 1 diabetes over 20 years ago, and luckyle I have no complications so far. I am 175cm high and weigh 82kg, I have a regular body, not obese or chubby, altough I could lose a few kilos.
During my 20 year carreer I have managed to get fairly good HgbA1C (5-6-7%) and glucose levels (4-7mmol/l), up until recently. In the last few moths, almost half a year my blood glucose started to spiral out uncontrollably. Altoguh my current HgbA1c levels aren't super high (7-8%), my glucose readings are anywhere between 2 and 22mmol/l.
When I started to notice this trend, I only had some slightly higher readings before dinner, finally leadin to, where the reading was always above 10mmol/l quite often in the 15 range. Now I have a really knowledgable diabetes doctor, but he is rather busy having a lot of patients. When we saw this trend, he advised to change my insulin regime, which should had allowed me a better control, but in fact it did not.
I probably don't have to say, that I had been taking insulin from day one, as I was diagnosed as a child. We consult with my doctory every wee now, but I am getting quite desperate as the situation with the swinging blood sugars is still an issue for me.
Currenlty I take Novorapid for bolus and Lantus for base, 9N-7N-8N-20L, for breakfast , lunch and dinner respectively. The amount of carbohydrates I eat is 35-60-40 respectively.

I am really getting desperate to remedy the situation the quickest possible, so I'd like to take any advice,if someone has been in a similar situation before.

Thanks

I was in a very similar situation to you at the beginning of the year. I'm 27, weigh 79kg and am 180cm high. Type 1 and diagnosed 1990. My blood sugars were usually anywhere except where they should have been, and had been for a long time. My wife was terrified of my hypos and nothing seemed to be working for me. Then I came across low carb dieting, and it has completely changed my life. My blood sugars have been so much more stable for the last four months, and it's easier to adapt to changes. Your carb intake is definitely not high, but you may benefit from lowering it further. Below is an example of my diet, and corresponding blood sugars. I am still adjusting, and hope to get my own levels even better in the coming months, but this shows what can be achieved. Hope this helps!

 

[tuzvihar]

What adjustments to insulin have you already tried?


Sent from the Diabetes Forum App

We have adjusted the basal and changed from Actrapid to Novorapid, so I could cut out 2 meals and only have to eat 3 times instead of the 5 which was kinda neccessary due the Actrapids 3 hour peak.

Do you keep a diary?

Have you changed the type of food you eat?

Do you weight your portions or estimate?

This is what the mind boggling is, that my daily routine ahsnt changed and I keep weighting my food and I eat the same type of food as before. I also
excersise to the same routine as before.

Hi. Do you currently carb count or have fixed carbs at each meal. It's possible your insulin ratio has changed?

I have fixed carbs/ meal, and yes most likely the insulin carb ration has changed, but I see no explanation to that.


Generally speaking my basal should be just about right, my 6:00am and 3:00am blood sugars are 80-90% right on target, what i have noticed is however, that something happens around 10-11Am, as my blood sugar starts to drop suddenly in a steep curve. Last month I had a CGM for one week and I had at least 2 days, where this has happened.

 

[tuzvihar]

What also has happened to me, that before I felt every hypo, I even wake up midnight, that my BS was very low ~2.0 and I was fully aware of that and could react to the situation. Now I also feel my hypos less, though I don't get into coma luckyly. I think some of my high bloog sugars must have been related to some hidden hypos. The other day I woke up with BS of 13mmol/l then after 2 hours of breakfast it went down to 10 and just before lunch it was 19 !!!!, while I hadn't eaten and my breakfast should had been all digested long before that as I also felt my stomach empty. I have also noticed this while the CGM was on me, that after a drop it suddenly starts to rise and go out of the roof.

 

[tuzvihar]

I was in a very similar situation to you at the beginning of the year. I'm 27, weigh 79kg and am 180cm high. Type 1 and diagnosed 1990. My blood sugars were usually anywhere except where they should have been, and had been for a long time. My wife was terrified of my hypos and nothing seemed to be working for me. Then I came across low carb dieting, and it has completely changed my life. My blood sugars have been so much more stable for the last four months, and it's easier to adapt to changes. Your carb intake is definitely not high, but you may benefit from lowering it further. Below is an example of my diet, and corresponding blood sugars. I am still adjusting, and hope to get my own levels even better in the coming months, but this shows what can be achieved. Hope this helps!
View attachment 5368

Thanks for the feedback, I have also read the book by Bernstein and I am an engineer myself, so it is absolutely reasonable, that smaller inputs(carbs/insulin) make smaller errors. It seems i'll have to try to make a food plan for a lower carbs diet, maybe starting with cutting my current carbs to half. I'll visit my doctor very soon and will have a talk with him about this.

 

[Charles Robin]

Thanks for the feedback, I have also read the book by Bernstein and I am an engineer myself, so it is absolutely reasonable, that smaller inputs(carbs/insulin) make smaller errors. It seems i'll have to try to make a food plan for a lower carbs diet, maybe starting with cutting my current carbs to half. I'll visit my doctor very soon and will have a talk with him about this.

Sounds like a good plan, and reducing carbs gradually is probably a good idea. I went from super high carb to super low carb like flicking a switch, and my body didn't thank me for it in the short term. In particular, I found I got extremely dehydrated very easily to begin with. Everything sorted itself out over a few weeks, but giving your body time to adjust gradually is probably a kinder thing to do

 

[Dyadya_Maykl]

I have had similar problems. I do not think there is a simple solution/answer, but I was helped by looking into:

1. more care in rotating my insulin sites.
   I tend to feel comfortable with a few areas, which then build up areas of hard tissue, which reduces the absorption of the insulin.
2. Not to inject through my clothes - I tended to do this when at works canteens, or when others are around, or or flights etc...
3. Count CHO intake much more carefully, and go for a 1:1 ratio of quick acting insulin to CHO intake. I had been given the impression that I could eat what I liked of CHO that had a high glycaemic index. I liked that idea - less concentration on estimation. I now am much more cautious of the CHO portions.
4. Much more blood testing, and try to understand what might have caused a high blood reading. Toothaches, illness and bad injection sites, as well as overindulgence are the usual culpriits, as are change in exercise and physical activity.
   
5. I was lucky enough to be accepted on a Dafne course - very good investment of my time. I think the medical authorities need to have refresher courses on a regular basis. Simply we are all human, all too human, and hear what we want to hear, and get into bad practice.
6. Oh yes - hypos. Yes they are terrifying for wifes and girl friends, and yourself. I used to over react and eat too much sweet stuff to counter balance the lact of sugar in the blood. I now carefully eat only 4 jelly babes, and monitor my blood after 20 mins, and if it is not showing an increase in sugar, then, and only then would I consider taking anything else.

Hope this helps. I must say the Dafne course has helped me a great deal.

 

[tuzvihar]

I have had similar problems. I do not think there is a simple solution/answer, but I was helped by looking into:

1. more care in rotating my insulin sites.
   I tend to feel comfortable with a few areas, which then build up areas of hard tissue, which reduces the absorption of the insulin.
2. Not to inject through my clothes - I tended to do this when at works canteens, or when others are around, or or flights etc...
3. Count CHO intake much more carefully, and go for a 1:1 ratio of quick acting insulin to CHO intake. I had been given the impression that I could eat what I liked of CHO that had a high glycaemic index. I liked that idea - less concentration on estimation. I now am much more cautious of the CHO portions.
4. Much more blood testing, and try to understand what might have caused a high blood reading. Toothaches, illness and bad injection sites, as well as overindulgence are the usual culpriits, as are change in exercise and physical activity.
   
5. I was lucky enough to be accepted on a Dafne course - very good investment of my time. I think the medical authorities need to have refresher courses on a regular basis. Simply we are all human, all too human, and hear what we want to hear, and get into bad practice.
6. Oh yes - hypos. Yes they are terrifying for wifes and girl friends, and yourself. I used to over react and eat too much sweet stuff to counter balance the lact of sugar in the blood. I now carefully eat only 4 jelly babes, and monitor my blood after 20 mins, and if it is not showing an increase in sugar, then, and only then would I consider taking anything else.

Hope this helps. I must say the Dafne course has helped me a great deal.

Hi,

1. I am rotating the sites a lot, so I don't have a lot of hard tissue. The only part I don't use is my upper legs as I tend to hit a blood vessel there to often.
2. Hardly never inject trough clothes.
3. Most of my diabetes life I tried to avoid "bad" foods and I feel this hasn't changed recently.
4. I measure pretty much as many I can / day, usually 5-6
The tooth thing might be something, as I'll get my wisdom teeth removed on friday. I dont have any pain, it just started growing few months ago and it is impacted, but no pain yet, but will see in a few weeks if it improves or not.
5. As far as I know DAFNE is for UK , and I forgot to say, but I am not UK citizen.

Will see, thanks for the feedback.

 

[Spiker]

The standard response to the
situation you are reporting would be to check and change your basal dose and carb ratios, or in your case learn to adjust your basal dose and your carb ratios (units of insulin per x grams of carb). You have been lucky that these ratios have not changed in a very long time. However it is quite normal for them to change over time.

While it would definitely work to reduce carbs and keep your insulin constant, the alternative (probably much more common) would be to increase the basal insulin and/or bolus insulin.

Could you get your doctor to send you on a course for a basal-bolus regime with dose adjustment? If not, try the free online BDEC course.

 

[goalie]

You may want to get a health care professional to check your injection sites, even if they are not hard, they can still have scar tissue and this will cause wide fluctuations in your sugar levels

 

[Louiserogers]

Hi mine went out of control and my doctor advised me to go on the pump I don't have to inject any more you test your blood and the result go to the machine then you type in your carbs and then the pump delivers your insulin and it controls it all for you it's the best thing I have ever had best of luck louise


Sent from the Diabetes Forum App

 

[Hilow]

After 53 years of T1 I am finding it more and more difficult to control my glucose levels. I am told this is not unusual, and I just plod on...I wish I could make up my mind to go on the pump, but always find an excuse. I am not always living in the same place, several months of the year I live in Asia, where it is very hot, and I don't wear too many clothes and swim a lot and so on. How would my pump fit into that kind of life style? What about hygiene in a hot country, where my body sweats like that of a horse rather than glows like a lady's? Louiserogers' contribution encourages me to discuss the pump option in more detail with my wonderful diabetes team, I feel now that this would help. In the meantime has anyone any ideas how to cope with the pump in a hot climate?

 

[Spiker]

Yes, like Tom Jones Disease, "it's not unusual". A pump such as the Animas Vibe can be worn while swimming. As a woman you can conceal your pump in a bra while wearing not much clothing. Sweat does affect the stickiness of the adhesive that holds on the canulas, but if you change them frequently I think you would be fine. You would probably want to start the pump at the beginning of a period where you have strong medical support, so you are well used to it before going abroad.

Miraculously sent via Diabetes Forum App. Probably on the 4th or 5th try :-/

 

[Hilow]

Th

Yes, like Tom Jones Disease, "it's not unusual". A pump such as the Animas Vibe can be worn while swimming. As a woman you can conceal your pump in a bra while wearing not much clothing. Sweat does affect the stickiness of the adhesive that holds on the canulas, but if you change them frequently I think you would be fine. You would probably want to start the pump at the beginning of a period where you have strong medical support, so you are well used to it before going abroad.

Miraculously sent via Diabetes Forum App. Probably on the 4th or 5th try :-/

Thank you, Spiker! When I go back to the UK I will talk to my team about the pump you mention. I will be there for at least 6 months, so that should be enough time to get used to the pump, I hope, and to get the necessary support.