Advice please

[trophywench]

I don't particularly 'low carb', but there again don't eat masses anyway, rarely eat more than 100g carb a day as it happens, never have - and absolutely no reason whatsoever why you or any other T1 should deliberately aim for lower carb than 43g for one of your main meals. That IS low carb for a normal bloke!!

 

[Gwynn]

It is interesting and helpful hearing how others cope and as you say, eveyone is different.

Tomorrow morning will be interesting as I raised my carbs slightly puposely this afternoon and evening to see how that will affect tomorrow mornings reading. This afternoon it was 5.1, tomorrow morning I am aiming for 5.5 to 6 knowing that the BS drops quite a bit during the night. However this is not a betting mans game. It could be anything although more likely to be in that range.

Interesting, my daily carb intake seems to be around 240g. Is that need I wonder because of the insulin and metformin.

The whole thing is fascinating and yet terrifying with a lot of stress if the readings go astray. Perhaps I will chill out more as time goes on and I understand things more.

Am I alone in being a bit slow on the uptake in this at diagnosis? Do most people struggle at first?

One of the posters quite rightly said that I have to take control which I am trying to do.

 

[SB2015]

I would be surprised if anyone takes on board all that we need to know at the start.

I found I picked up on some bits of advice, and then found that it needed to change after a while as things settled. Be patient with yourself and take things step by step, and fire away with absolutely any questions that you have. You are not alone and there is plenty of experience to draw on on here .

 

[trophywench]

Well I do believe around 240g carb a day is what the NHS reckons average carb intake is for adults, so congratulations Mr Average! LOL

If it isn't harming you, I see no reason to change it for the sake of changing it.

 

[rebrascora]

So, that is carb heavy. How do you divide your carbs across the day. And, how many carbs do you consume in a normal day

Since I am guessing this was in response to my post, I will also reply...

I usually have somewhere between 40g and 70g carbs a day. I usually only have breakfast (10-30g carbs) and evening meal (20-30g carbs) although I may have a chunk of cheese or a few nuts or a boiled egg with mayonnaise or some olives in the middle of the day, depending on how busy I am. What I love is that I eat so much less than I did but I don't feel hungry anymore, even when I don't have lunch.

I was initially misdiagnosed as Type 2 so I spent 6 weeks learning to eat very low carb to try to bring my levels down through diet. By the time they realized I needed insulin I had broken my carb addiction and wanted to stay this way. I find it easier to just inject for 2 meals a day or sometimes just one at the moment as I am doing enough exercise to not need insulin on an evening sometimes. I feel fitter and healthier than I have for 30 years following a low carb higher fat way of eating and really enjoying my food.... tonight I had rack of lamb with red currant glaze, cauliflower cheese and celeriac chips. I may have a chunk of cheese and a small glass of wine before bed.
Low carb doesn't suit everyone but I find it really beneficial for my weight, general health, enjoyment and BG management. Takes a lot of getting your head around at first though, especially when you have spent your whole life basing meals around carb rich foods (bread, pasta, potatoes etc), but once you get the hang of what to buy and how to cook it, it just becomes easy.

 

[Gwynn]

This mornings reading (at 6am) was 5.3

Excellent.

So far things are moving in a good direction.

Its a bit like I'm walking on my tip toes on egg shells. You may find this a bit silly but I do find it all quite stressful. The odd thing is that I am a bit squeemish so I was expecting to be ripped apart at the prospect of obtaining blood and injecting often, but no, that part has not phased me in the slightest. A surprise to me. What has freaked me out is the variability
, lack of control, and a tough start with so little information.

I do tend to worry about things so this fits perfectly in feeding my worrying nature. Thankfully the members on here have really helped to quell my fears and help me move forward and take a level of control.

Still, one day at a time...

Today a prawn salad for lunch. Nice, and again minced beef for tea (got to use it up).

So a quick question for you. What happens if I get to the point where I reduce my insulin and metformin to zero and is it possible as a type 1 diabetic? . Does that mean that if I want to eat something extra then I should cover it by taking some insulin. Of course I will ask the diabetic nurse for advice.

Has anyone else here managed to reduce their meds to zero or am I missing something important?

 

[Robin]

Has anyone else here managed to reduce their meds to zero or am I missing something important?

Sometimes people find when they’re newly diagnosed that they go though what’s called the 'honeymoon period' where their pancreas manages to put out enough insulin to keep them going, especially on a low carb diet. Most type ones, it has also been found, still continue to produce a bit of their own insulin, Sooner or later, though, the pancreas doesn't put out enough insulin to cover all bases, and you are then reliant on insulin doses. Even if you didn’t eat any carbs at all, the liver trickles out glucose the whole time in the background 24hours a day, to keep your brain and other vital organs supplied with fuel.

 

[Gwynn]

Yes, thanks... A honeymoon period. Makes sense. I wonder how long that will last.

And let me guess, the amount of glucose the liver puts out constantly varies from person to person so there is no guide as to what to expect. Just keep monitoring things I guess.

I'll let you know when the honeymoon period seems to be over. Did you have one and if so, how long did yours last?

 

[helli]

I'll let you know when the honeymoon period seems to be over. Did you have one and if so, how long did yours last?

Some people find their pancreas splutters a little when they are first diagnosed with Type 1. One day, it works perfectly and the next day it mis-fires again. This means they experience ups and downs with their blood sugars because their body's insulin production is unpredictable.
Others find their islets of Langerhan (the cells that produce insulin) die off slowly and gracefully, As a result, their injected insulin demands increase over time.
Both scenarios seem to be called "honeymoon period".

I experienced the latter. My pancreas is was one of the last remaining graceful parts of my body. Whilst I did not change my diet, exercise regime, weight or lifestyle, my injected insulin needs grew over 8 years. So I have always assumed my honeymoon period lasted 8 years.

Because we are all different, some people's honeymoon lasts much shorter.

 

[rebrascora]

Can I just say that your control is amazing at the moment.
The readings you are getting, mostly in the 5s are absolutely brilliant and I hope this continues for you but just to let you know that many of us struggle to get those sorts of readings longer term for a variety of reasons, so don't be too concerned if you do start to get more variation.... that is normal too. You mention that you are a worrier, so I just want to put that out there that things may not always go that smoothly so don't panic if you get the odd 8 or 12 even. Those of us who have the Freestyle Libre system which monitors our levels every few minutes day and night have a range set between 3.9 and 10 and if we can keep within that range for 75% of the time, our health care professionals are pretty happy. Hopefully that gives you some context for your future expectations.

With my honeymoon period there were 2 notable points where I needed to increase my basal insulin. The first was about 6 months after diagnosis and the second about 3 months after that. Recently, because I have been doing more physical work, my needs have reduced a bit, so it is very much a state of flux and trying to balance it as best you can.
It makes you appreciate just how clever a fully functioning pancreas is.
We do have one member whose basal insulin needs dwindled to nothing but he still needs fast acting insulin to cover the food he eats. There was also a lady on my DAFNE course who had been diabetic for 50 years and just used about 5 units a day (2 basal and 3 bolus). She would hypo almost every night but her readings would go up into the teens during the day. She needed to be on an insulin pump to cope with her body's needs. There are some people who need 100 or more units of insulin a day..... so it really is a case of finding what works for you as an individual and being prepared to tweak that as needed. YOU become the expert in YOUR diabetes and the medical staff are there to help and support you with YOUR management of it.

 

[Inka]

Hi again @Gwynn You’re not alone in hating the variability and unpredictable nature of diabetes! It was something I found very stressful when first diagnosed. I was expecting to ‘take my dose’ of insulin every day and that would be it - but, of course, it’s a lot more complicated!

With regard to your question, as it’s possible you have Steroid-induced Diabetes rather than Type 1, in theory there’s a possibility your diabetes might ‘go away’. It doesn’t happen in every case, but it does in some.

Obviously if it is Type 1, it won’t but you’ll probably have a honeymoon period.

Your insulin regime suggests they’re not treating you as a Type 1. If I was you, I’d be asking a little more about that.

As for carbs - potato and mince is not ‘carb heavy’, especially as you’ve clarified the carbs were only 43g. That is most definitely not carb heavy! Your diet is clearly working for you and you’re paying really close attention to everything and being very meticulous. You’re doing really well.

 

[Robin]

Yes, thanks... A honeymoon period. Makes sense. I wonder how long that will last.

And let me guess, the amount of glucose the liver puts out constantly varies from person to person so there is no guide as to what to expect. Just keep monitoring things I guess.

I'll let you know when the honeymoon period seems to be over. Did you have one and if so, how long did yours last?

I was misdiagnosed as Type 2 to begin with, so spent my honeymoon period paring down my carbs to the bone and trying to contain it on Metformin and Gliclazide, then adding in a basal insulin until it was obvious they weren’t working. By the time I got properly diagnosed with a GAD test, I think my honeymoon period was over. It took nearly a year from first symptoms (rapid weight loss without trying, thirst and lots of weeing, and feeling I was wading through treacle) to getting on to a full basal /bolus regime.
And yes, you’re catching on fast with the 'No two people are the same' mantra!

 

[SaraKaya]

Hi Gwynn,
I was diagnosed with type 1 at 53 in September 2020 it’s a strange old world but this forum is definitely a good place to find out things.
Since being in the forum I have now dabbled with fish and chips and even a three celebrations went past my lips the other night!
I spent the first couple of months scared of food and was very ‘worried’ about carbs but I am now getting the hang of it and I must confirm what everyone else is saying it really is an individual sport!
what suits one person doesn’t necessarily suit another but once you get around the mechanics you can sort most things. Occasionally it all goes off the rails for no reason and those are the times you can get quite frustrated with it especially if you feel you have ‘stuck’ to the rules! There are no rules with diabetes!!
I had a 149 staring point and I have managed to get my BG levels down to something reasonable so I am hoping my next round of bloods get below 100!! But like others have said I think this is helped or hindered by the ‘honeymoon’ phase although it’s nothing like my fortnight in Torremilonos in the 1980’s I can assure you!!
Keep going you are doing well but just be kind to yourself with it.
Off for a cup of tea and a Soreen malt loaf snack who needs a Hob nob anymore!!!!

 

[trophywench]

Bearing in mind the human body needs insulin constantly - if the body can no longer make it - ie Type 1 diabetes - then the only way that body can continue to function is by someone injecting insulin. So no - once the so called honeymoon period (why honeymoon? I enjoyed my honeymoon, well obviously must have done, so much that I had another one a few decades later) is over, it's not physically possible.

 

[Gwynn]

Thank you so much for your replies. It is hydrocortisone induced diabetes.

The reading this evening is 5.5. So, for now, things are generally settling a bit.

I am on just 2 units of insulin in the morning to be reduced further to zero. However, I take your points that once the honeymoon period is over I will have to inject insulin again.

I think the comment about things going off the rails for no particular reason was very helpful to me. I like things to be done properly including my internal hormones, enzymes, and stuff which is normally looked after by the liver and pancreas plus a whole raft of other organs. So now I have a bit of fear that it all may go haywire at any moment. I must get to grips with that.

For now I am on top of things. Tomorrow is a new story....

It is all a bit tiring

 

[rebrascora]

If it gives you some perspective, a non diabetic person's BG levels will vary quite a bit too. They can go lower than 4 on occasion and higher than 8, so expecting your levels to stay about 5 or even trying to keep them in the 5s all the time would probably be abnormal, even for a normal person with a fully functioning pancreas.

 

[helli]

If it gives you some perspective, a non diabetic person's BG levels will vary quite a bit too. They can go lower than 4 on occasion and higher than 8, so expecting your levels to stay about 5 or even trying to keep them in the 5s all the time would probably be abnormal, even for a normal person with a fully functioning pancreas.

Coincidently, I have just found this article https://www.diabetes.co.uk/forum/th...ic-far-more-variable-than-youd-expect.178437/
Blood sugars of someone (a marathon runner) without diabetes.

 

[rebrascora]

That was really interesting @helli. Thanks for posting. It even makes you wonder whether the closed loop systems might be aiming for something which is not natural and if perhaps some variation in BG levels might be important to other systems within the body.... a bit like the immune system is better for being challenged occasionally.
Gosh, imagine 100 corrections a day to stay in range. Makes you feel pretty good about yourself to think that you manage it with just one or two much larger clumsier doses on MDI than the tiny adjustments a pump dispenses... if that makes sense.
Really interesting to see all those sub 4 readings through the night, especially as I am struggling with solving my night time hypo problems.

 

[Gwynn]

If you are wondering why I am obsessing about keeping my BG to between 5 and 6 it is because the one thing they did say to me in the hospital was that that was what I had to aim for. Mind you they didn't say how I was to attain or keep or correct my BG.

So I came away with the one thought.... 5.5 or die. It is hardly surprising that I was a bit on edge and when my BG initially kept getting lower and lower. I was freaking out.

I feel somewhat better now that it seems a bit more settled and that you have mentioned that it can vary quite a bit in 'normal' people. So I will try not to panic if it goes up or down, but work out what to do to take corrective action if necessary.

Mind you a BG result between 5 and 6 makes me feel good. As if I have passed yet another exam or won the lottery for the day.

 

[nonethewiser]

Yes, thanks... A honeymoon period. Makes sense. I wonder how long that will last.

How long is piece of string, who can predict.

Did you have one and if so, how long did yours last?

Certainly did, mine was about year before things settled.

If you are wondering why I am obsessing about keeping my BG to between 5 and 6 it is because the one thing they did say to me in the hospital was that that was what I had to aim for.

Impossible in real world, own is 4.5 - 8.5, only get that about 70-75% of time, sometimes hit 80% in target but 70's is usual figure.