Newbie

[SB2015]

I only got tested because diabetes is a by product of SPS. I was praying it would come back negative - but no such luck.
I feel My other experiences have made me a better and stronger person, but at the moment that strength isn’t there because I don’t understand (and I want a break!) You’ve got to laugh though when you go into a chemist and you don’t have to say your name or anything before your prescription is in their hand. If I am in the honeymoon period and my body doesn’t have a clue what it’s doing then I could well need this forum as a place to let off steam and seek reassurance, aswell as guidance / advice / support

The honeymoon period is a bit of an issue at the start. Those remaining Beta cells tend to Chuck out some insulin so it makes the doses more difficult. This could be why you need such small doses. The half unit pen makes it a lot easier. If this continues it might be worth talking to your Diabetes Specialist Nurse about the possibility of a pump. I went over to this as I needed ver6 small doses and the pump allows me to adjust doses by 0.1 units. It helped me to match the insulin to my carbs more carefully.

This is a great place to let off steam. You can share your experience with people that ‘get it’.

 

[Bruce Stephens]

I wonder whether it is the monthly changes in hormones that just makes things more difficult as they have such a big impact on levels.

I presume that's a big part of it. (It was raised in a brief twitter thread a while ago, and I don't think there was that much detail.)

 

[Ladyk]

Glad you recovered yourself.
I wonder whether it is the monthly changes in hormones that just makes things more difficult as they have such a big impact on levels.

The cold certainly does - on a beach and it freezing. Sugar levels dropped big time.

 

[Madeline]

Hot humid weather makes me soar - I’m guessing it’s because it puts my body under stress because I find it harder to breathe. And the diabetes is definitely much, much harder to deal with than the brittle asthma, at least that has known triggers and I can take steps to avoid more easily.

 

[Ladyk]

Hot humid weather makes me soar - I’m guessing it’s because it puts my body under stress because I find it harder to breathe. And the diabetes is definitely much, much harder to deal with than the brittle asthma, at least that has known triggers and I can take steps to avoid more easily.

Hot weather kind of affects me but I end up drinking lots of water which we all know affects blood sugar. All in all diabetes in a right pain: todsy went out to water park, had picnic - usual stuff: sausage rolls, pork pies etc and didn’t affect me “today”.

 

[Ditto]

Hello and welcome to the forum. 🙂

 

[Ladyk]

Hi and welcome. You have come to the right place for help and support. It is great that your other half is behind you all the way.

I am another late starter with Type1 and like you, I was diagnosed last year. The advice and support from the experienced members of this forum has been second to none in getting to grips with this condition and managing it well.

It is a big learning curve in the beginning and there is a lot of conflicting information out there both from official sources and the internet in general so it is not surprising that your husband's advice has been changing. That happened to me too when I thought I had things figured out and then it turned out I hadn't quite understood. It can also be confusing between Type 1 and Type 2 diabetes advice as that can be significantly different. The members here live with diabetes day to day and therefore understand it better than many of the health care professionals, so I tend to rely more on the advice I get here, although that can still be conflicting as we are all individuals with different tastes and our bodies respond slightly differently and as I said, some are Type 1 and some are Type 2 so their strategies for managing their diabetes can vary.

Which insulins are you on and have you had any courses like carb counting or DAFNE (Dose Adjustment for Normal Eating)? Are you on multiple daily injections or an insulin pump? Do you have Freestyle Libre which is the sensor that goes on your arm and saves you having to finger prick so often?

Look forward to hearing more about you and if you have any questions feel free to fire away with them.

I’ve just picked up this message sorry.
Yep, I’m on Levimer and NovaRapid. I can kind of understand the latter but not the former.
To be honest, I think everything I have experienced in the last 12 months, has made me kind of robotic with the diabetes. In case that sounds like self pity, it is not meant to - I’ve had a bad time (being polite with my

Hi and welcome. You have come to the right place for help and support. It is great that your other half is behind you all the way.

I am another late starter with Type1 and like you, I was diagnosed last year. The advice and support from the experienced members of this forum has been second to none in getting to grips with this condition and managing it well.

It is a big learning curve in the beginning and there is a lot of conflicting information out there both from official sources and the internet in general so it is not surprising that your husband's advice has been changing. That happened to me too when I thought I had things figured out and then it turned out I hadn't quite understood. It can also be confusing between Type 1 and Type 2 diabetes advice as that can be significantly different. The members here live with diabetes day to day and therefore understand it better than many of the health care professionals, so I tend to rely more on the advice I get here, although that can still be conflicting as we are all individuals with different tastes and our bodies respond slightly differently and as I said, some are Type 1 and some are Type 2 so their strategies for managing their diabetes can vary.

Which insulins are you on and have you had any courses like carb counting or DAFNE (Dose Adjustment for Normal Eating)? Are you on multiple daily injections or an insulin pump? Do you have Freestyle Libre which is the sensor that goes on your arm and saves you having to finger prick so often?

Look forward to hearing more about you and if you have any questions feel free to fire away with them.

Thank your kind words. To be honest, after everything that I have encountered (not meant to come across self pitiful), i think I just want to be robotic for the moment. Some might think lazy. I know that attitude is completely wrong, but metaphorically speaking, I am brain dead. What illnessses I have encountered is bad luck. I can’t change it. My hubbie ( and all family) are supportive but I want patience with my learning / understanding. Not just a medical person throwing all this fancy info at me, or being told to pick up a book a read. I’m not low or negative about things because just got to get on with it etc etc, but to be able to “sit down” and ask Simple questions without the feeling I am being thick because they are obvious to everyone else, would be nice. For example, don’t recall being told how (if even what) “base” insulin was. Stupid question I know. If I was told, I had just to learnt to walk again so that was my focus. Does this make sense? I’m hoping it does snd all you guys are willing to give me that patience. In time, you can all call me a ditzy mare because I should then be able to look back and laugh at the fact that I really was ditzy mare and made things more complicated than they should have been 🙂!

 

[Bruce Stephens]

Yep, I’m on Levimer and NovaRapid. I can kind of understand the latter but not the former.

Our livers release glucose throughout the day and night, and Levemir is a long acting insulin just to handle that. (It lasts 16 hours or something like that, so usually you take two doses a day. And for most people it has a pretty flat profile.)

 

[rebrascora]

We all know how confusing and overwhelming diagnosis is and how much information we are bombarded with and it is perfectly normal (not ditzy at all) not to take all that info in at first. Diabetes is extremely complicated and we are all still learning, even people with 50 years experience. That is why this forum is so great. We can all learn from each other and share thoughts and ideas and do so at our own pace. You don't need to know everything all at once but gradually you will get the hang of it.

As Bruce has said, there are two main sources of glucose getting into our blood stream. Our body needs a continuous supply of glucose to fuel out cells day and night, to keep our heart beating and our lungs working and our brain alive whilst we sleep as well as give us energy to move about and carry things and use our brains during the day. The obvious one is the food that we eat, mostly carbohydrates, but the liver acts as a sort of back up battery to supply glucose when we are not eating and keep us fuelled through the night. It trickles out a background level of glucose to keep us ticking over and the Levemir is there to enable our organs to access that glucose to keep us alive when we are not eating and keep our BG levels from going too high. If the dose of Levemir is right it should hold our BG levels steady if we skip a meal through the day and obviously during the night when we are not eating anyway. It is a bit trickier to get the right dose of Levemir or whatever other basal insulin you are on because quite a lot of factors affect how much you need. I seem to have to tweak my evening Levemir dose almost every night at the moment, because I am active one day and not so active the next, or a might have a cheeky glass of red wine with a chunk of cheese before bed and that causes the liver to divert it's activities away from producing glucose in order to deal with the alcohol in my blood so that can cause my levels to drop too low or stress usually makes them go too high and I need more Levemir.
Anyway, that's is basically what the Levemir is for. If you still don't understand please ask for further explanation. I know I found it a bit difficult to grasp.

 

[everydayupsanddowns]

One way of possibly attempting that ‘robotic’ approach might be fixing your doses and carb counts for a while. This is how many of us were started ‘back in the day’

You define a set of doses and a matching ‘allowance’ of carbs in grams for each meal of the day. Then stick to them... you can have whatever carbs you like as long as it adds up to the right amount - and you take the defined doses, the same each day.

It can take some of the constant calculation and dose adjustment out of your routine. Plus... if (by a process of experimentation) you get lunch working well - eg 2 slices of bread as a sandwich and an apple approx 50g carbs - and it works well for a whole month... then suddenly stops working well... well you know it’s not your calculations that have changed... it’s just that your insulin needs have shifted, and now you need half a unit more (or less).

Not sure how much sense that makes written down!?

 

[Ladyk]

First things first, no offence is meant by anything I say - it is just poor phrasing,

thank you for all the offers of support and advice. Being completely honest, I think this will all make sense in time. My body is ridiculously unpredictable at the moment. For example, I can have an approx level of 10 one morning (after breakfast), do a 15 min walk to the local swimming pool and it drop to 6. I can then raise it to about 8 / 8,5, do 30 lengths and it only dropped to 5.4. At night I go to bed with it between 9 and 10, one morning I will wake up with it about 5, the next 8. I wake up the same time as I have school run. Once I’ve got over that, mornings are fine. Come the evenings, we’ll that’s a different ball game. I have sufficient to cater for dinner, and it’s all hunky doryuntil (without fail) about 9:15 and then it drops dramatically. Nothing makes sense.
All of you have been kind etc, but for the interim I just want to function. Going by how i’v reacted to my previous conditions: I seem to need a year to “function”, before I am fully prepared to read and understand what is going on - epilepsy for example. The SPS (stiff persons syndrome if any intrigued) I didn’t have a choice to face because of how I ended up (hospital for 3 months etc). BUT I’m fine now!

I guess I’m just “wanting” to hear other people’s experience to understand at my own pace and have somewhere I can “go to” to ask what others may feel a REALLY stupid question.

May waffle make any sense?

 

[rebrascora]

Those variations in levels actually don't sound too bad to me. I wonder if your expectation is too high. Balancing food and exercise and insulin is a very complex business without all the other factors like stress and hormones and seasons and illness and not forgetting the Diabetes Fairy, so keeping your BG levels steady, within the 4-7 range is nigh on impossible and you are really looking to keep it between 4 and 10 most of the time, which seems to be what you are saying. Going up and down between those parameters and slightly beyond is what most of us are experiencing day after day

The dip in the evening might be down to too much bolus insulin.... many people find they are more responsive to insulin in the evening and need a lower ratio of insulin to carbs, or it could be a basal insulin issue perhaps as a result of the exercise you did earlier in the day. Are you dropping into the red ie having a hypo or just feel it dropping fast and don't feel well but catch it before it goes below 4?

It is totally understandable to need time to even want to process it all and learn more. It sounds like you are doing great so far so just keep doing what you are doing and chip away at more info as and when you are ready.

 

[Ladyk]

Those variations in levels actually don't sound too bad to me. I wonder if your expectation is too high. Balancing food and exercise and insulin is a very complex business without all the other factors like stress and hormones and seasons and illness and not forgetting the Diabetes Fairy, so keeping your BG levels steady, within the 4-7 range is nigh on impossible and you are really looking to keep it between 4 and 10 most of the time, which seems to be what you are saying. Going up and down between those parameters and slightly beyond is what most of us are experiencing day after day

The dip in the evening might be down to too much bolus insulin.... many people find they are more responsive to insulin in the evening and need a lower ratio of insulin to carbs, or it could be a basal insulin issue perhaps as a result of the exercise you did earlier in the day. Are you dropping into the red ie having a hypo or just feel it dropping fast and don't feel well but catch it before it goes below 4?

It is totally understand

Those variations in levels actually don't sound too bad to me. I wonder if your expectation is too high. Balancing food and exercise and insulin is a very complex business without all the other factors like stress and hormones and seasons and illness and not forgetting the Diabetes Fairy, so keeping your BG levels steady, within the 4-7 range is nigh on impossible and you are really looking to keep it between 4 and 10 most of the time, which seems to be what you are saying. Going up and down between those parameters and slightly beyond is what most of us are experiencing day after day

The dip in the evening might be down to too much bolus insulin.... many people find they are more responsive to insulin in the evening and need a lower ratio of insulin to carbs, or it could be a basal insulin issue perhaps as a result of the exercise you did earlier in the day. Are you dropping into the red ie having a hypo or just feel it dropping fast and don't feel well but catch it before it goes below 4?

It is totally understandable to need time to even want to process it all and learn more. It sounds like you are doing great so far so just keep doing what you are doing and chip away at more info as and when you are ready.

able to need time to even want to process it all and learn more. It sounds like you are doing great so far so just keep doing what you are doing and chip away at more info as and when you are ready.

thank you. We have established I am more susceptible in the evenings, so the amount of carbs I would “technically” need is too high.

it’s just very frustrating, having to have something to eat before going to bed to raise my sugar level.

Everything is just so frustrating.

 

[rebrascora]

"We have established I am more susceptible in the evenings, so the amount of carbs I would “technically” need is too high."

Or conversely you need a bit less insulin for the amount of carbs you actually want to eat.

 

[rebrascora]

Yes, it is frustrating. That is something, I think we all of us can agree on, but you have to learn to roll with the punches and accept that it's never going to be perfect. Gives you a great deal of respect for the ability of a properly functioning pancreas though doesn't it!

 

[SB2015]

thank you. We have established I am more susceptible in the evenings, so the amount of carbs I would “technically” need is too high.

it’s just very frustrating, having to have something to eat before going to bed to raise my sugar level.

Everything is just so frustrating.

Hi LadyK

This is indeed a good place to vent and to ask absolutely any questions that you have. No one will mind at all. Just ask.

As others have said at each meal we have two choices. Take a fixed insulin dose and eat the amount of carbs you need to match it, or count the carbs we choose to eat and work out a dose of insulin to match. With your levels dropping at around 9:00 pm if you have eaten within the previous three hours it sounds like you have had too much insulin at the evening meal for the amount of carbs you ate. I find my ratios fo insulin to carbs are different during the day. I need more in the morning than I do at night. It took a bit of trial and improvement to find out what I needed for each meal. And then as you have found things are not constant, so fine adjustments are needed as we go along. That is just how D is, and our sensitivity changes with the weather/ hormones/ level of activity/ ...

Reading through your posts It is good to read how stable many of your readings are. So well done in getting to grips with things. Having said that I do understand the frustration when our D just doesn’t stick to the rules and decides to behave differently. This could still be due to the honeymoon period with the Beta cells that you still have deciding to ‘play’ again after a bit of a rest.

I was wondering whether it would be worth talking to your DSN about splitting your background insulin (levemir) and taking some of the dose in the morning and the ready at night. I switched to this and gave me more flexibility to adjust things for overnight without mucking up the daytime readings.

Let us know how you get on with any changes you make.