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This is really getting me down... I've had enough..

C

Catsymoo

Well-Known Member
Messages
301
Location
Portsmouth, United Kingdom
Type of diabetes
Type 1
Treatment type
Insulin
Dislikes
Having diabetes
Diagnosed 14th June, still no info on which type. I am now on Humulin I, long acting, once every morning. (or afternoon since I seldom get up before noon). Started on 6 units. Have to slowly increase dose until it works. I'm at 12 units now and I still haven't seen my fasting below 10. This is ridiculous. 8 units seemed to have more effect than 10 and 12. I actually took 12 this morning, and then 4 units an hour before dinner, since we went out for a meal. I am also taking Metformin 500mg twice a day, and Gliclazide 80mg twice a day. Tonight my blood sugar was 22, 3 hours after a family meal at a restaurant.

I am so sick and tired of watching my family eating whatever they want under my nose and I'm stuck with salad and other boring low-carb stuff and still my blood sugar is at least 20 after eating. Ever since starting the insulin, it generally has been hovering at 14 - 16 all day. Before it was anywhere between 13 waking up, and 25. (37 on diagnosis, probably higher than that beforehand, too)

Then there's a pig out day where I ate 5 Thorntons AKA 36g of sugar, a banana and popcorn at lunch and I was only at 14 blood sugar all day. I rarely see my fasting blood sugar below that. It makes no sense whatsoever. I only took 8 units at 6am that day! I want to go home to the Netherlands and be with my boyfriend, but I'm stuck here with doctors constantly poking and prodding me. My hb1ac or whatever was 139, which is stupidly high. It's not fair. I'm young, and I'm not unhealthy. I've been restricting myself so much apart from this weekend, I am so miserable. Exercising just makes my blood sugar go up, and gives me abdomen pains/slight shortness of breath like I need to sit down. I'm only a tiny bit overweight and my doctors told me not to lose any, since I'm not unfit or anything. They said it wouldn't hurt, but it wouldn't really do anything.

My biggest worry is being super resistant and needing like 60 units a day and how much this is going to cost me abroad. That's like 1 cartridge every 4 days. I was hoping one would last at least a month... I can't afford this at all and I really don't know what I am supposed to do. My life is just a mess now. My boyfriend cannot move to England because he is handicapped and needs a certain doctor that they don't have in this country (super rare condition), and I just can't see how our solid, long-term relationship is going to work now I've got this.

My nurse said I might also want to try intermediate to cover my breakfast and dinner. Do they work better than long acting? As in, are they "stronger"? Or will 12 units of short or intermediate lower your blood sugar the exact same amount as long-acting, just for a shorter duration?
 
Hi there

It's still very early days for you and you're on a steep learning curve. I'm not on any medication, so can't offer any advice in the area. Your fasting levels have come down, so that is a major positive for you.

With regard to your exercise, what intensity of exercise are you doing? If you exercise too hard and have your heart rate consistently high, then your levels will go up. I've found that the best type of exercise to bring my levels down is actually fairly brisk walking. I love to do hard cardiac workouts, but that did impact on my levels as I found with my blood results last March, so I've had to evolve my exercise habits.
 
Sadly, I get the abdominal pains even with regular walking. It's not actually WHILE I exercise. It usually occurs when I walk down to the shops nearby to me. It's about a 10 minute walk. I start to feel unwell when I get to a shop and stand around a lot. This doesn't usually raise my blood sugar that I'm aware of, but anything more than that does. Once I walked 2 miles briskly and felt great when I got back, tested, and it had sky rocketed! It's so weird, you'd think it was a stitch or something but I'm not unfit at all, I can walk forever, I love walking.

Funny enough though, I notice that if I've eaten something rather sugary before walking to the shops, I don't tend to get the abdominal pains as much. When I do get it, I feel better if I sit down for a moment. I'm guessing it's either a false hypo, or early DKA. Since I have high ketones but no other signs of being a type 1. It doesn't feel like false hypo symptoms, though. I've had those lately being on insulin now, feels different. I mean coming down from still high teens mid twenties in a few days on insulin to 14s and 15s has got to be a shock for my body.

The only way I could describe the abdominal pain is like you're sucking in your stomach for a long period of time, but can't stop, yet I'm not doing that. It feels tense, and after it happens, for the next couple of days I feel like I've been doing 500 situps or something. It's like a muscle strain ache rather than a stomach ache.
 
I got that kind of abdominal pain just before I was put in hospital to start insulin - it feels somewhat like hunger, somewhat like the stings you might get when running too fast? Top of the tummy goes hard, like you want to relax, but you feel like you've done too many sit-ups?

I'd say it's your pancreas complaining - maybe trying to spit out insulin to get sugar to your muscles but failing. I would take that as a sign that you should probably do something about it before too long.

I would ask them to allow you to do meal time insulin (bolus) with long-term insulin (basal). It sounds like you need it. I wouldn't worry more about that price wise than you already do about the Humulin you are getting, you might find it equals out to about the same total amount but with better control.

For me personally, going from PreMixed insulin (30/70) to basal bolus has seen my insulin need go down to about 2/3s of what it was before while I was still on the same diet - and my control is better - I think I had about a 2-3 mmol drop in my average measurements - something I could not do before as I would otherwise get hypo's at the wrong times (never a good time, but exercise was fairly impossible on premix).

Good luck.
 
Catsymoo - a big, comforting **HUG** for you.

I cannot advise you on anything to do with insulin, have you learnt carb counting?? I dont know, perhaps you should ask for advice from members with type 1 diabetes who also follow a lower carb diet, in particular Dillinger or Pneu??
You are very stressed and upset, understandably so, but do try and relax, stress does raise bg levels, and also you should not exercise if bg levels are higher than 13.
I would say its much more beneficial for you to relax, not panic, adjust your diet if necessary and work as a team with your HCPs to bring your bg under control. I once was in a similar situation as you are now, my GP used to prescribe 3 months worth of meds at a time.
You probably need to plan for the future though, you wont be able to travel back anf forth to see a UK doctor, what if you do fall ill in between visits??

As for your relationship, Catsymoo, you love each other, your relationship will survive, I am sure, your boyfriend knows that you are in the UK to get to grips with it all and stabilise your health issues.
Relationships can and do survive periods of separation, stay in close contact, phone calls, emails, write him surprise love letters or send him little gifts, whatever, you know best I am sure and hopefully you can be together again very soon.

Thinking of you x
 
Dear WhitbyJet,

Just had to say it - "You are a thoroughly nice person"

Rob
 
Hi all, thank you so much. I feel so much better today already. I got my first single figure reading today ever. I stayed up very late last night and had some All-Bran and cheese at 8:30 this morning despite being at 14 blood sugar. I took 12 units of my insulin again. I slept pretty much until 4pm and now I'm at 9.4 so I'm really chuffed with that. It's high yeah, but at least it's actually in the normal range for once!

I would like to go on shorter acting insulin to cover my meals, I was going to ask tomorrow when I see my nurse. I just want to eat a normal healthy diet and not worry about the odd blowout here and there. I think what gets me down the most is, for weeks on just tablets I deprived myself of carbs so badly that I was just depressed and always hungry... yet I was still getting readings of 19+ all day. I just thought my god, if it's like this on hardly any carbs, I dread to think what it was when I was stuffing my face with chocolate! In the Netherlands we eat really healthy, and since I came home I had a bit of a junk food catch up on stuff I can't get over there, and it's ever since then I've been unwell! I've eaten really healthy since I was about 17. I'm 22 now. I lost 3-4 stone over those years on purpose, through extremely hard work and super healthy eating. So you can see why I think it's unfair. Instead of a slimmer certificate I get diabetes.. lol. If I had known I was going to get it no matter what, I would've ate chocolate while I still could haha!

But anyways, overall I just want more freedom with my food. I don't ever want to binge, but I'd like to have the short acting insulin so I can inject a tiny bit extra if I know I'm going to go out for a meal, or have a nice pudding. All in moderation, of course. My nurse says I might need the intermediate mix to get the results I want. It seems to be after breakfast that I get the highs, because the long acting hasn't quite peaked, and it doesn't until after lunch really. I am not giving up my All-Bran, I love it and it's the lowest GI cereal.

And as far as Holland goes, I'll have to cross that bridge when I come to it. I'm going to have a long chat with my doctor and try and get him to give me like 9 months worth of meds to bide me and my boyfriend some time. My uncle is a college professor and diabetic all his life, and he said at early diagnosis and because I'm young, the doctor's priority should be my health and he said he had no trouble getting 9 months worth of insulin to go to New Zealand. So that's good news I suppose.
 
Oh and by the way Whit, is that your cat? He/she is gorgeous. I have 2 cats in Holland and I miss them so much. And you are a nice person, as Rob said. x
 
Catsymoo..

I would suggest that you need to try and get a proper diagnoses as to your type and pancreas function.. from what you have said it appears that the doctors are hedging all bets with the medication... my concern would be if you are actually type I then the regime that you are on now is unstable and you need a rapid insulin as well as the long acting. You can get a GAD anti body test to see if you are producing the type I antibodies.. you can also get a c-peptide test to see what level of insulin you are producing yourself..
 
Hi Catsymoo!

I agree with Pneu. You are young and not really overweight and your BG is high, so you have a good chance of it being LADA - a slow onset form of Type 1 diabetes. You need them to test for this. With LADA you often produce quite a lot of your own basal insulin at first, but the first phase insulin is missing altogether, so your BG spikes high when you eat. Intermediate acting insulin can help with this as it starts working after about an hour and peaks at about 4 to 6 hours. However, most people with LADA do need a bolus insulin with their meals as well. Ask you doctors for the GAD and c-peptide tests.

Smidge
 
Hi again, thank you for the replies. I'm having a very emotional day today. I don't have the most supportive parents in the world, and I'll leave it at that.

The doctors are currently waiting for GAD antibodies result to come back. They said I could be a 'slow burner'. I'm not really bothered about the type, I don't particularly mind injecting or anything. I just want to be given something that flippin' works so I can go back to the Netherlands. I've postponed my return so long already because I am thinking my health is priority. I am slowly getting to my target. I'm starting to think 12 or 14 units of Humulin I either morning and/or night + bolus to cover meals would give me the control I want. My nurse only told me to inject in the morning, but the last 2 days I have been taking a little extra (4 units) before bed, to cover my liver dumping sugar in my blood overnight. If I wake up on a high, it really gets me down for the rest of the day. I'm sure this isn't a big deal though (tweaking a bit for extra coverage until I get a different type of insulin).

One thing I will say though, I am not particularly happy about taking Gliclazide AND insulin. I really don't see the point. I swear Gliclazide is just putting more stress on my pancreas. If I was a doctor I would've given short acting insulin for meals, and stopped the Gliclazide. Since it made no difference when it was added to Metformin I initially was just taking twice a day and that was it. I can understand staying on Met because it increases sensitivity, correct?
 
Hi Catsymoo!

Yes, Metformin increases sensitivity. However, given that they haven't got the test results back for you yet, they don't know if you're insulin reistant. If you are LADA and not overweight, you might not have any/much insulin resistance and therefore might not need the Met. I agree with you on Glic - I have no idea why they would want you to take that as well as insulin. It seems at best a waste of time (i.e. it isn't working) and at worst a little dangerous (i.e. it works and combined with the insulin drops you too low). I'd certainly question that - but I'm not a doctor. I have LADA and I use Insuman Basal (an intermediate acting insulin) morning and night and Apidra (rapid-acting) with each meal. No Glic and no Metformin. Paul1976 has LADA and he does use Metformin with his insulin - I don't know why - might be worth PM'ing him and asking.

Smidge
 
Hi all, today I have been taken off of Glic. And switched insulin to Humulin M3 twice a day. I am ecstatic to report that my ketones are completely gone! They were at level 4 last week, then 2.4, now 0.2. So my Humulin I was working, but I still have high blood sugars after meals. Today though, (I haven't taken my M3 yet), I gave in and had chocolate again at lunch, and popcorn, and 2 hours later I was only at 11. Normally I would be 20+ after that! So it's coming down slowly. I am on 10 units of M3 with dinner now and 14 before breakfast -- bit worried this might be too much. I've just had dinner and pudding and feel a bit weird. Going to wait to test though, I am sure it's just a false hypo. Anything below 15 gives me false hypos. Thank you all so much for your relies and support. I feel things are finally starting to look up for me.
 
Oh! Sorry I forgot to mention, I questioned being LADA or MODY today and my specialist pretty much ruled them out.
 
I would guess then they have decided that you are type I.. this would be consistent with the insulin and the removal of the other drugs..

Best thing you can do now is test, test, test and get to understand your body and your diabetes.

First target has to be bringing down your blood glucose levels.. I would say aim for 6 - 10 mmol/l at the start as this gives you some room to make mistakes and not hypo.. do not be afraid to use the rapid insulin if you are high to correct... just make sure that you test atleast once every two hours, preferably every hour in the beginning.. once you have some level of control you can then look into refining your insulin.. so no-carb days to check that your background insulin is correct and fix your ratios.. but I guess your a good few weeks off that yet whilst you get things under control..

I think the most important thing to remember is at the start it seems like a lot of information and frankly it is..!! but overtime things will get better and you will get this under control..
 
I don't think my insulin even worked this morning. 2 hours after All-Bran I was at 20.7. Then 2 mins later my other machine told me 17... I took 14 units of humulin M3 30 min before eating. 10 units almost covered dinner + pudding last night so what gives?? It seems the Humulin I worked better, just too slow. It's only been a day though. I injected 8 more units earlier to cover my lunch even though I wasn't supposed to. This makes no sense.
 
Things like exercise or not, time of month for women, time of injection compared to meal time, stress... lots of factors, sweetie.

Insulin resistance is something I think everyone has (more or less, some so much that it becomes a problem) but almost everyone I think will find that their insulin need compared to the same amount of food is bigger in the morning.

Do you do spreadsheets well? Excel and the like?
 
i am having then same problem i now feel worse on the insulin than i did before i started,my sugar levels are actually higher now than before and i am on lantus solo 50units in the morning and novorapid 20 units 4 times a day also sitaglipton and i'm type 2.i feel tired all the time and gp not really being much help.
 
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