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I don't understand my diabetes anymore

rbabyblue

Newbie
Messages
2
Type of diabetes
Type 1
Treatment type
Insulin
Hello everyone! I'm really sorry if this is too long but I'm really desperate and need some opinions.
I'm 23, I was diagnosed with T1 12 years ago and at first I was handling it very well, I would sometimes get really bad hypos but I never lost consciousness or panicked. I had bad days and good days but I lived well with diabetes to the point where it never bothered me in my everyday life. I used to go days without checking my BGL if I didn't feel any symptoms of a high or a low, and my tests usually came back good. I also have been dealing with bad anxiety since I was 7, and it has been getting really bad with time.
2 years ago, I started having some hypos (I had power walked right after an injection so my insulin sensitivity increased => hypo) while I was on a new panic disorder medication which heightened my symptoms, so I freaked out. A few days later, I had a really bad hypo because I miscalculated my dinner + correction dose, and I completely lost it. I was having a hypo only 30 minutes after eating, with most of the insulin being still active in my body, I kept drinking a lot of juice and soda but was not noticing any change in my BGL so I was certain that I was going to die. I started throwing up and lost consciousness for a little bit and was taken to the ER, but by the time I got there, my BGL started going up, so I was discharged. This experience was very traumatizing and I started suffering from PTSD, feeling like I'm having hypos when I'm not, getting panic attacks whenever I use insulin or walk for a tiny bit, waking up in the middle of night with tachycardia, being literally obsessed with my BGL and whether i'm getting a hypo, because I'm terrified of reliving that horrible low again.
This has caused me to be afraid of overdoing my insulin injections, and now I'm high most of the time. I started counting my carbs and trying to find my ratio but it seems like my diabetes is being very weird and crazy? I think I have figured out my breakfast ratio which is 1:5 but sometimes it fluctuates. For my lunch meal, it is very very rare that I get a good reading after lunch, and even when I do, it's still a little on the high side (180 mg/dl for example), I have tried different ratios but nothing seems to work, would it be normal for my ratio to be less than 1:5? Sometimes I try to monitor it and do a reading every 30 minutes, and I noticed that it starts to go down by the first hour and then it goes back up. I keep trying to correct it during the day but it keeps getting down then getting up. I tried raising my basal by 1 or 2 units, but that's impossible because at night, I have to go to bed with a reading higher than 200 mg/dl to get a good reading in the morning. When I try to go to bed with a good reading at night, I get bad hypos while I'm sleeping, one day it went from 345 mg/dl to 34mg/dl in only a couple of hours when I used 3 units to correct it.
I have cut down carbs almost completely because I cannot deal with this anymore, but even so, I still get highs and lows. I honestly don't know what to do. Do you have any suggestions?
I am planning on seeing a doctor soon, but I'm taking my finals this week so I can't make time. I definitely will after I finish my exams.
TIA!
 
Hello and welcome @rbabyblue

Sorry to hear of your experiences, that really doesn't help your head space at all.

Have you discussed your anxiety with your diabetic nurse at all ? There are things both they and you can do to manage both your control and anxiety with this, your nurse should be able to connect you to a CBT support to help manage the anxiety associated with your past experiences and to help you work through them. Your nurse can also get you signed up to a DAFNE - dose adjustment for normal eating course, this will help in many ways like connecting with other type 1's as well as improving your knowledge of your management which will help you to become an expert.

I can only write a small piece here as just about to go out, but please have some hope it will not be like this forever, things can improve and will, better control will help,your anxiety as running high isn't great for mental well being, tapping into the right resources will help you to a better place. Also lots of helpful folk around here who can help you too.
 
Firstly you must have a lot of stress and anxiety going on at the moment with finals going on. Hopefully that is for this week and then you get a bit of downtime?
I can’t offer any advice on insulin I’m afraid, as I only had it when I was pregnant with my daughter. But I was taking a med Gliclazide that is long acting, 12 hours and makes you produce insulin for that time. For me it was too strong and I had hypos. Not as low as you have by any means by the sounds of it, but I just wanted to say, I understand where you are coming from with the panic feeling and anxiety from it. I too had that feeling. I think is started after I had a hypo out of the blue, and I hadn’t for a long time. I wasn’t expecting to just dropped low on the med, and the feeling of loosing control scared me. Then I became really worried that I was going to hypo, before driving, once I arrived somewhere, like my local supermarket, I’d start to panic and feel really jittery. I’d test and it would be 5 or something, so not anywhere near low. It was more a fear of it. It went on the whole time I took that med. I tried to do deep breathing and to tell myself I was ok and I can do this. It helped, plus oddly I found having water and jellybabies on me helped too...as soon as I was feeling it, I’d eat one and drink water. Calm my thoughts and then try carry on and the feeling would lessen again. It’s very hard to describe, but it is not a nice feeling. You might be feeling it heightened at the mo with added tests going on. That is a stress and pressure in itself. Fear can make us feel things very intensely. You must’ve felt scared with the er visit. Maybe look at the positives from it, you could write down all the negatives...what you felt, what you where frightened about, what you couldn’t control etc...then really try focus on positives from it. (Sounds hard I know) that you are resilient, that you are strong and about to do finals, and others only you would know...maybe there is a diabetes support group near you?
Good luck with your exams.
 
Welcome and I'm really sorry you're having a tough time. Please phone your diabetic nurse every day this week and continue to talk through these issues until you get to the bottom of them.
With your hypo issues, you should qualify for funding for a Freestyle Libre (if you're in the UK), which you can alarm with a Miao Miao. I couldn't cope without one.
Unlike the body's own insulin, injecting fast acting insulin works over a four hour window. If your carbohydrate ratio is correct, when you test your blood sugars before a meal, it should rise and not return to the same level until four hours later. Don't worry about the upwards curve. I sometimes split the dose if my food has a higher fat content, to stop my blood sugars from falling initially.
I always cut back my background insulin if I've had a hypo.
I wish you all the best for your finals and I hope your diabetic nurse and doctor find a way forward.
I also recommend 'talking space plus'.
 
As a T1 for 49 years I can truthfully say that hypos are the thing I most hate about diabetes. They are scary, horrible, can make you feel like <insert favourite swear word here> for a day afterwards if they are really bad, and can also lead to a see saw of high and low blood sugars.

I've had some hospital inducing hypos (mainly during pregnancies but also more recently when I lost hypo awareness as a result of keeping my blood sugars too low) and have come to the compromise where I aim for a "good" hba1c but not a perfect one.

Insulin ratios: I'd suggest keeping a food, insulin and blood sugar diary for a week. You've got several issues here
1) basal dose - I suspect it's too high if you are getting hypos at night. You really need to get this right before trying to calculate your insulin ratios.
2) insulin ratios - they can vary by time of day for an individual person, and the actual ratio can vary massively, anything between 1u per 1g and 1 unit for 20g …. (and probably outside those ratios).
3) correction dose - this allows you to reduce your blood sugar if it's too high before a meal (eg 1 unit might reduce you by 20mg/dl)

My clinic usually issue me with a continuous glucose monitor and get me to keep a diary for a week before recommending new ratios/basal. I could work it out myself but it helps to have their back up.

It sounds like you could really benefit from a consultation with a doctor/diabetes clinic and ideally get a continuous glucose monitor with an alarm so that you can have warnings if your blood sugar goes too low.

Good luck with your finals.

ps Some of the advice here refers to UK course etc. I am guessing you are in Europe or the US as you are not using UK bg units. Can I ask where you're from, as some of the advice about medical care available is country dependant?
 
Hi @rbabyblue , i'm sorry you're having a rough time!

I'm 24 and i've been diabetic for about 19 years. I totally understand the hypo anxiety, i had very bad hypos at a young age (unconsciousness, sickness etc) and for a very long time i was scared of going hypo, so i stayed up high out of choice. This was through my teen years, staying high meant i put on loads of weight, i was depressed (body image but general feeling down and exhausted all the time because of my high sugars). If i wasn't high i was hypo and unconscious within minutes.

This has gotten miles better since i've been on this forum and started to understand my diabetes more. I'm controlling it much better (not perfectly, but better) and since my home situation has changed, i am not comfort eating, or rebellion eating. Which was a big issue for my while living with my step mum, who was very controlling with it.

It sounds like the insulin you are using has a different effect on you now (very few people go through the whole of their diabetic lives using the same insulin!). It might be worth talking to your doctor or some medical person you are seeing for your diabetes management to talk about different insulins. Some people become more or less resistant to what they are using and have to give their bodies a change because blood sugars just can't be controlled with that type of insulin any more.

Take it one day at a time, it's so easy for it to take over your life! Try to make sure you balance your diabetes with the rest of your life, as much as you feel you have to get it sorted, don't let it take over. I'd say figure out your mornings first, once you get them sorted a lot should fall into place. It may take a few weeks of setting an alarm during the night to check but you will get it sorted! Good luck, you will get there

P.S. good luck in your finals!!!
 
Hi @rbabyblue

I have been type 1 for 30+ years and it never fails to frustrate me how many thing in life, environment, hormones, weather, time of day and many more things can change your balance temporarily or permanently or somewhere in between. I'm assuming you are on a pump already?
There are times when I have just had enough of it all. When I say to myself "I'm not going to do this anymore" (or tell my husband its his turn to be diabetic for a while ). I am sure nearly all type 1's have felt that more than once in their lives. Even when you are apparently doing everything right something upsets it and you go wild for a few weeks or months and even before you work out the new stats to get it all back on track again you swing the other way. It is a dark and lonely place when you feel like that as even when you go onto this forum you can feel that everyone else is a better diabetic than you are. All I can add is you aren't alone even if it feels that way.
So many good advice above already and especially with regards to a CGM. Unfortunately it has taken me over a year to persuade the NHS to provide one for me (still only temporarily) so i self funded but i understand that isn't always possible for everyone to afford. If you can though i highly recommend it. Even if it is just for a short period but start with your DSN as you could get it for nothing. Even if you have to do what i did and beg.
 
Hi everyone! Thank you so much for your advice and kind words, it's really nice to feel heard and understood!
To answer some of your questions:

EllieM said:
ps Some of the advice here refers to UK course etc. I am guessing you are in Europe or the US as you are not using UK bg units. Can I ask where you're from, as some of the advice about medical care available is country dependant?
Click to expand...

I am from Morocco and sadly, it's very rare to find courses or support groups concerning diabetes here, I'll definitely look it up and see if I can find anything near me.


I don't use a pump (although I thought about it, would it help in my case?) nor a CGM. There was only one Freestyle Libre supplier in the country, and when I tried to order mine, I found that the website was taken down. I'm planning on going to France or England soon to get one installed there.


Thank you for pointing out things that haven't crossed my mind, like the fact that I may need to change the insulin that I use! I'll mention it to my doctor along with my basal dose.


Yes I knew about that and I mostly wait for 3 to 4 hours before testing but I still find high BGL :/

Thank you all so much! As for my finals, they went fairly well, I still have one super difficult exam tomorrow then I'll be done. But then it's the weekend so I'll only be able to get an appointment at the doctor's starting from next week. I'll keep you updated on what they tell me.
 
Hi @rbabyblue, I hope the last, tough, but phew it’s all done now, part of your finals went well. What were you studying?
What insulin are you taking now? Insulins have different action profiles; it might be worth your while checking these out online before you see your doctor so you’ve an idea of which basal and which bolus insulins might suit you best.
I had a horrid time for a while with nighttime hypos but these wretched sessions became a thing of the past when I changed basal from Lantus to Levemir - I don’t know if the brand names are the same in Morocco. I inject Levemir twice a day and my daytime dose differs from my nighttime one. However, don’t be guided by what I take, I can’t tell you what’s best for you. We’re all different.
Enough of me, back to you. I’m not at all surprised that you want to avoid devastating hypos, they’re the devil’s children! I don’t think people who’ve not experienced them can fully understand the way they make you feel threatened by mortality. Your decision to try to get hold of a libre in the U.K. is a good step but you’ll also need a supplier to maintain provision of the sensors. Each sensor lasts 14 days. It’s possible to order the sensors and the reader direct from Abbott so you may not have to wait until you come to the UK - you don’t need to be fitted for them, just follow the instructions. I did this myself when I began to use them.
I hope the appointment with your doctor’s fruitful, and your future’s rosy.
 

So sorry to hear you're feeling like this. I think we can all empathise! I've ended up in hospital a couple of times over the last couple of years from hypo induced seizures so know how it feels to have that anxiety for sure.

I haven't read all of the responses so apologies if someone has already suggested this, but have you tried splitting your basel doses? I take mine at 10:30am and 10:30pm rather than all in one dose. You might find you need different amounts morning and night and that could help control the night time hypos. It will take some trial and error to get right but perhaps speak to your nurse and they can help guide this.

Of course, apologies if you already do this, it was the 1st thing that came to mind to perhaps help!

Hope you start feeling calmer and more in control soon, it will get better!
 
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