Concerned

[Inka]

I know, nothing seems to make sense for me. It’s driving me crazy. The c peptide was urine and it was shortly after diagnosis so hadnt really made much changes. My diet at that point was pretty healthy anyway, bit of a sweet tooth but not ridiculous. I was shocked as my as my ac1 was only 51, but home testing, fasting around 13/15 and would stay in teens most of the day but if I ate normally I could reach nearly 30. Was in metformin for a couple of months and sugars didn’t budge. Started insulin with new diagnosis in December last year, I just couldn’t seem to get it right, I’d take it half hour before and eat normal have massive spikes then drop real low, I was carb counting correctly. I have maintained good control with my current diet but as you know I am disappearing fast. I just never feel well. I was so active even with sugars that high. Now I’m basically a zombie xx

It’s really sad that you feel like a zombie That’s no way to live. I honestly think you need to eat properly and then take the insulin you need for the food. Forget your type for now. Get the two insulins, eat well and get living again.

My C Peptide was a blood test, but it was done many years after diagnosis so showed very poor insulin production, which was expected. When I was diagnosed, my blood sugar was approaching 30. I can’t remember if I’ve mentioned this to you, but despite that, it could go as low as the 3s with no insulin. My consultant said that erratic insulin production was a sign of a failing pancreas.

I think your description has similarities. I had hypos too but I needed that insulin. You just have to snack early on as to keep your glucose from going too low. The only concern is nighttime, but my basal dose then was 1 unit and that kept me ok. I was eating normally, approximately 200g carbs per day. No doubt if I’d eaten in a very restricted manner I could have temporarily stopped insulin, but I credit that insulin with a) allowing me to lead a normal life, and b) protecting my remaining beta cells so that my honeymoon lasted years not months.

 

[EmmaL76]

It’s really sad that you feel like a zombie That’s no way to live. I honestly think you need to eat properly and then take the insulin you need for the food. Forget your type for now. Get the two insulins, eat well and get living again.

My C Peptide was a blood test, but it was done many years after diagnosis so showed very poor insulin production, which was expected. When I was diagnosed, my blood sugar was approaching 30. I can’t remember if I’ve mentioned this to you, but despite that, it could go as low as the 3s with no insulin. My consultant said that erratic insulin production was a sign of a failing pancreas.

I think your description has similarities. I had hypos too but I needed that insulin. You just have to snack early on as to keep your glucose from going too low. The only concern is nighttime, but my basal dose then was 1 unit and that kept me ok. I was eating normally, approximately 200g carbs per day. No doubt if I’d eaten in a very restricted manner I could have temporarily stopped insulin, but I credit that insulin with a) allowing me to lead a normal life, and b) protecting my remaining beta cells so that my honeymoon lasted years not months.

Thanks again for taking the time and sharing your story. I just need to pack up punishing my body I think. I have insulins Semglee and novoraoid. Although weirdly I get terrible reflux every time I use novorapid and this isn’t noted as a side effect. I was originally told to take 6 units of long acting, maybe I will start with that. To be honest it’s only really my morning sugars that bother me, I usually go straight up to 10 ish with no food and even one mouthful of Greek yogurt would send me even higher, the more the day goes on the more I can eat, but the mornings completely drain me. Anyway I have taken up too much of your time already, I am extremely grateful for you advice and support as always x

 

[helli]

I know quite a few people who live the predictability of Tresiba.
Its flat profile is fantastic if your basal needs stay the same.
Typically, the people who live their Tresiba are make.
Women's hormones often mean that we need more flexibility each month.
Going the other direction is levemir which is a twice daily basal which is great if your nighttime needs are different to your day time ones.
Until I started pumping, I was on Lantus once a day which gave me the flexibility to change my dose whenever I exercised but I think it is considered old fashioned nowadays.

Personally, I would be reluctant to rush to a pump too early. As I found yesterday, pumps fail and you need to feel confident to revert to injections at short notice during an inconvenient time.

 

[EmmaL76]

Okay so consultant sent me a copy of the letter sent to my doctor. The medications suggested in this order
Sitagliptin
Gliclazide
Fiasp and tresiba
Insulin pump therapy.

Although he was leaning toward MODY, his letter also does not rule out type 1 or 2, which has confused me a little from my conversation.
So Im giving up. At the end of the letter it states I pose a unique challenge to the nhs who unfortunately will be very difficult to manage. So that’s it. Clear as mud.

 

[rebrascora]

So sorry you feel so let down Emma. I have to say that that letter really doesn't help you in my opinion and I think you may have wasted your money.
Did you get a Glucose Tolerance Test as I seem to recall that was something that was discussed a while back?
I think, if you haven't tried Gliclazide it might be interesting to see if it has any effect and if it doesn't, then that suggests that your insulin production is waning and you need to embrace insulin therapy and together with your GAD result suggests that you are Type 1 but perhaps just a bit of a slower onset, probably aided by your low carb eating. Like Inka I don't think that has done you any favours and in some respects eating a normal diet and possibly even ending up DKA would have made the situation more clear cut.
I think you need to be brave and start eating some carbs and see what happens and if levels start to rise which I assume they will, then I believe you have insulin that you can use.

 

[EmmaL76]

Hi, thanks so much for your input and understanding. The only glucose tolerance I have had was with my first pregnancy which I just scraped through. I’m so fed up, my anxiety is through the roof. This professor is top of his game and he’s baffled. I don’t want to be a challenge to the nhs… it makes me feel worse. After reading the letter I havnt stopped crying. I feel utterly hopeless. I will try the drugs, whatever they suggest and I’m trying to come to terms with the fact that I may need to make myself worse to get better, it’s hard, so hard. This is typical me, I can’t ever do anything by the book, always got to be the odd one. Xx

 

[rebrascora]

Sending (((HUGS))).

 

[rebrascora]

If you eat some carbs and you need insulin, then you are not making yourself worse, you are just using the appropriate medication to treat your condition. At the moment, you seem to be starving yourself and suffering desperately with anxiety and they are both making you ill.
Can eating some carbs and injecting some insulin really be that much worse? Start slow and conservative with doses and see how you go.

 

[Inka]

Hi, thanks so much for your input and understanding. The only glucose tolerance I have had was with my first pregnancy which I just scraped through. I’m so fed up, my anxiety is through the roof. This professor is top of his game and he’s baffled. I don’t want to be a challenge to the nhs… it makes me feel worse. After reading the letter I havnt stopped crying. I feel utterly hopeless. I will try the drugs, whatever they suggest and I’m trying to come to terms with the fact that I may need to make myself worse to get better, it’s hard, so hard. This is typical me, I can’t ever do anything by the book, always got to be the odd one. Xx

Please don’t feel so down @EmmaL76 That letter was just a convoluted way of saying that he doesn’t know. I’ve no idea what the ‘challenge to the NHS’ bit means but IMO it was totally unnecessary to say - and also untrue. Your diabetes isn’t unique and it isn’t a drain on the NHS.

I honestly think you’re Type 1 (not that I have any medical knowledge,I stress again). Perhaps you have a little insulin resistance with that - that’s not unknown. Some Type 1s do. Also, as I said previously, restricting your diet hugely can also cause insulin resistance. So don’t worry about that.

Please eat normally. Not only will you feel better/stronger, you’ll then be able to see the true picture of your diabetes. Insulin will support your pancreas and allow you to eat normally and thrive. It’s ‘natural’ (although human insulin is GM) and will help your body. I’d rather take insulin than the drugs mentioned.

Eating normally won’t make you worse. A normal, healthy diet will help you thrive, and if you need a little insulin to support you, then take it and know that there are thousands of us doing exactly the same thing. Insulin is a friend - and so is good food. XX

 

[EmmaL76]

Thankyou inka, I don’t know where I would be without particularly you and rebrascora. I totally understand where you are both coming from, and to the outside world it must look like I am reluctant to take the obvious measures to help myself. I can’t explain this other than I feel when I’m on insulin and eat fairly normal, I don’t feel it works in the same way for me that it works for others, I take it at least half an hour before meals and carb count correctly but I spike as if I hadn't taken it but then drop much later, that’s why I settled on the type 2 way of life, it’s almost as if I’m resistant then the injected insulin and my own kick in at the same time. X

 

[rebrascora]

Firstly Emma, if you didn't have Libre, you wouldn't know you were spiking and spiking is totally normal. Secondly you might need to adjust your pre-bolus timing a bit more when you want to tackle that, but in the early stages of insulin usage you really should just be aiming to be back in range by your next meal and not worrying about spikes. You are trying to run before you can walk! Once I got the hang of the basics I started working on reducing that spike but it was probably nearly a year after starting on insulin. It is not going to do anything terrible to you in the mean time and many people go a whole lifetime not knowing that those spikes are happening because they never tested to see.

You have to remember the range of "normal" is wide with diabetes. I may be at one end of that range, but I still consider that my Type 1 is normal.
I think you may be confusing insulin resistance with slow absorption and that is very different. It is also possible that you have a strong DP/FOTF which the insulin has to work against. I always think of it as swimming against a strong tide or head wind and my insulin needs a good head start to hit the finish line when it needs to. I have told you before, I am sure, that I needed 1hr 15 mins prebolus time with NovoRapid on a morning and now 45mins with Fiasp. This is normal for me and I am definitely Type 1 and don't consider that I have insulin resistance because I don't have a high insulin to carb ratio, it is just how long the insulin takes to work in my body.

I really wonder if you have overloaded yourself with more expectation that is helpful and maybe you would be better just finger pricking before meals initially until you get into the swing of it, rather than using Libre which is showing you too much data and you are clearly fretting over what it shows you.

 

[EmmaL76]

Oh yes I definitely have FOTF, but not DP. As usual your explanation has helped massively. I can be quite frustrating I know, it’s a shame they don’t add a slap in the face emoji, I would get plenty of those. I’m sure that all the uncertainty/misdiagnosis and all the tests I went through in the beginning have knocked me for 6 and has caused me to overthink everything. I’m going to eat some food today… and gradually include a bit more each day, with insulin. I’m glad to hear your response to insulin was slower too as that clears up a big query In my mind. I think I also need to restart my depression/anxiety meds or maybe go back to counselling. Thanks, I’m going to try really hard not to flap anymore xx

 

[EmmaL76]

Ok, so definitely not flapping but one more question, I was never told about insulin to carb ratio. Was just told to take 1 unit for every 10g of carbs. Is there a particular method you use to do this or is it just as simple as taking one unit, eating 10g carbs and seeing if my sugars go back to normal after a certain time ?

 

[Inka]

Thankyou inka, I don’t know where I would be without particularly you and rebrascora. I totally understand where you are both coming from, and to the outside world it must look like I am reluctant to take the obvious measures to help myself. I can’t explain this other than I feel when I’m on insulin and eat fairly normal, I don’t feel it works in the same way for me that it works for others, I take it at least half an hour before meals and carb count correctly but I spike as if I hadn't taken it but then drop much later, that’s why I settled on the type 2 way of life, it’s almost as if I’m resistant then the injected insulin and my own kick in at the same time. X

My guess is you’re a perfectionist @EmmaL76 It takes one to know one 🙂 Diabetes is a condition which can cause a lot of mental stress, if you let it. We need to do our best but also not keep our reins too tight - I don’t know if that makes sense?

I completely agree with @rebrascora Forget the spikes! Your aim is to be back in range before your next meal. If you go low some time after eating, that’s normal. I did too. It’s just a question of balancing that. I ate snacks - just small ones - that kept me balanced well. This is normal early in diagnosis. You take enough bolus insulin to have a moderate spike (ie you don’t want to be spiking to 25mmol or whatever), then mop up the low sugar later with 10/15/20g carbs as needed. You soon get into a routine of doing that. Gradually you’ll probably find you can reduce the snacks. Note - by gradually I’m speaking in years or at least a significant number of months.

I’m going to repeat myself here - nothing I write is blaming you. It’s me trying to explain, not to blame.

 

[rebrascora]

If it's any consolation, I seem to like to make things as difficult as possible for myself and overthink things too and it is as frustrating for me as it is for other people. It's a difficult trait to break out of. The fear of getting something wrong makes me reluctant to do something. I really think it comes down to lack of self confidence and I think that is where the DAFNE course turned it around for me with my diabetes. I think I realised that I already knew more than some people with a lot more experience and whilst my diabetes wasn't/isn't the easiest to manage there were people muddling along with much greater difficulties.

I still use the 1:10 carb ratio which was suggested as a starting point. It might not be totally accurate for me but it is good enough because I eat low carb and it is nice and easy to calculate and if I need to have a snack later as Inka suggests or a correction with insulin, I just do it, so I really don't worry too much about my ratios. Getting my basal doses right is my top priority.
With you being so slim, 1:10 might be a bit too much. You could be really cautious and start off with 1:20 and if your levels are above range at the next mealtime, then you know you need more insulin and try 1:15 or 1:10. I would maybe start with a couple of slices of toast or something like that which is quite easy to quantify in terms of carbs and see how you get on. Make it as easy for yourself as possible to start with.

 

[EmmaL76]

Fab advice as always you two. I got up this morning with the same horrible black cloud, and between you two you have managed to lift my mood just enough to get some motivation back to get on top of this. That’s a really special thing to be able to do for somebody. So you can both go about your day now knowing your changing lives! That’s got to be a nice feeling xx

 

[Inka]

Yes, 1:10 is just a rough starting point. Some people start on different ratios eg if it’s known from their blood test results that they’re very sensitive to insulin. Remember too that different meals might need different ratios eg you might need 1:8 for breakfast but 1:12 for evening meal.

I think one of the reasons people are started on 1:10 is that the Maths is easy. That’s not a joke, by the way. Early in diagnosis, there’s a lot to think about, so a simple formula is less work. Then it’s often changed to 1:15 or 1:20. Of course, those ratios change over time, and change back, etc etc. Mine have roughly stayed the same for the last few years but I do slight tweaks such as changing a 1:10 to 1:11 or similar.

 

[rebrascora]

Great to hear that you are feeling a bit more up for the challenge again. So pleased we have been able to lift you a bit. Would like to say all credit goes to the forum for providing the platform for self help and I am just paying it forward after others here helped me.
Of course, you do realise I'll now have to spend half the day polishing my halo!! 😉

Really hoping it goes well for you but whatever mistakes happen, they are an important part of the learning process and you get more from those than the successes.... much as the successes feel good 😎 , so don't see them as set backs but steps to improvement.

 

[Inka]

I’ve read kind, empathic replies from you to other members here @EmmaL76 We’re not special. This is a lovely forum where we can all support each other as and when we need it. Have a good day and no more black clouds. XX

 

[trophywench]

I entirely agree with both Barbara and Inka on this occasion. It has taken me YEARS to find out that whilst 1u to 10g suits me at most mealtimes, if I decide to eat cake with my mid afternoon cuppa that reduces to approx 1u to 8g - if I take 1u to 10g with that, I'll be hypo before dinner at 6.30 ish. My meter and pump are
fairly old tech. and can only accept ONE insulin to carb ratio, so I have to 'manually' subtract 20% of the food bolus for this once it has calculated it. (for manually I mean using mental arithmetic and physically adjusting it with the 'down' button before pressing the 'deliver' button)