Type 1.5 being a hassle these days

[Mileana]

Lost weight, cool. Then converted some weight to muscle it seems. Reduced insulin from around 45 units to 30, all in good order.

Losing more weight. Slowly. It's autumn. I'm a slow beast in winters.

Last week or two, hypo after hypo after hypo - 2.2, 2.5, 2.3, 3.4.

Clever that I am, I think that oooh, I must reduce insulin. So I do. By 10 percent. Still hypoing. So I knock off 10 percent more a couple days later. Still hypo'ing.

Total daily dose now down to around 20 units and that is too much even if I stick carbohydrates into my face reluctantly to avoid fainting...

Can't make my long-acting behaving. As that won't behave, bolus is a guess at best. Must try to reduce again in a days time when I have the full effects of recent change.

Wake up during the night in sweats and panic and racing heart and with a banging bl**dy headache.

Just started work again so hardly have the time to be fair, but what can one do.

Just wanted to moan, sorry.

 

[abs]

Would it be worth having a chat with your DSN to see what they suggest? Can imagine how horrible it must feel to keep goings lows especially with a new job I'd guess just keep hold of something to treat them at all times and maybe check your levels at night?

 

[smidge]

Hi Mileana!

I know exactly how you feel! I was like that a few weeks back, hence the change from Insuman to Levemir. At the moment I'm happy if I keep in single figures! Got an 11 last night :shock: I really wish I knew what my pancreas was doing! Consistency would be so good!

Hope it sorts itself out for you - maybe it's just the change in your routine?

Smidge

 

[noblehead]

Just started work again so hardly have the time to be fair, but what can one do.

Really the only thing you can do is keep reducing your insulin doses and test frequently, I agree with abs that advice from your diabetes team might just come in handy here.

 

[Mileana]

Diabetes team say 'that can't be' and 'no way you can have a half unit pen' and that's all I'm getting from them. And if I just ate 250g carb a day, all the problems would be magically solved. Sure... Right...

Humph.

 

[noblehead]

Diabetes team say 'that can't be' and 'no way you can have a half unit pen' and that's all I'm getting from them. And if I just ate 250g carb a day, all the problems would be magically solved. Sure... Right...

Humph.

I remember you posting a few weeks back that you wanted a half unit pen and unsure if your diabetes team would give you one, could you not ask your gp to prescribe one or purchase one yourself over the Internet?

 

[Mileana]

Yes, probably I could buy one, it's the price of them, and I'd get it for more or less free otherwise - not so rich at present. Will try the GP see if she will help out.

Just a bit tired of being treated like an idiot, I suppose.

Thanks, all, noble...

 

[Unbeliever]

Yes, probably I could buy one, it's the price of them, and I'd get it for more or less free otherwise - not so rich at present. Will try the GP see if she will help out.

Just a bit tired of being treated like an idiot, I suppose.

Thanks, all, noble...

I guess it IS your 1'5 status and the inconsistency isn't it Mileana? I am sure that I am not a classis T2 but I have experienced enough hassle with medication to be strongly of the opinion that at present, I do not want a more precise diagnosis as it would only mean insulin. I cannot for the life of me see how insulin is considered to be such a panacea for all types of diabetes.
When insulin production is inconsistent in our present state of knowledge, there is no way of judging this except by results and
this could be dangerous.

As you are 1'5 and such a diagnosis is still fairly rare I doubt if many DSNs are expert in its management. It seems obvious that
at times when you are not producing any - or very little insulin you need to inject and at other imes mabe you should not be injecting at all but once you are on insulin I supppose it is inevitable that you will be reated as a full-blown T! - and you need more specialised help.

Do you see a consultant? I imagine this present problem will subside in time but you need some advice for when it happens again.

I had a lot of problems a few years ago with huge spikes at times for no reason and fought against insulin for the reasons I mentioned above because my readings in general were in the 4s and 5s and but I couldn't find anyone to believe me, even when I showed hem my meter! Eventually I found someone who explained that the panreas does NOT behave consistenly if it is impaired in any way. Obvious , of course , but many HCPs don't seem o realise that thi is so.

I am very sorry for your difficulties , especially with a new job and hope you can find someone who recognises the particular difficulties of your situation. It is hard enough when you conform to the recognised tyoes of diabetes.

 

[Unbeliever]

Yes, probably I could buy one, it's the price of them, and I'd get it for more or less free otherwise - not so rich at present. Will try the GP see if she will help out.

Just a bit tired of being treated like an idiot, I suppose.

Thanks, all, noble...

I guess it IS your 1'5 status and the inconsistency isn't it Mileana? I am sure that I am not a classis T2 but I have experienced enough hassle with medication to be strongly of the opinion that at present, I do not want a more precise diagnosis as it would only mean insulin. I cannot for the life of me see how insulin is considered to be such a panacea for all types of diabetes.
When insulin production is inconsistent in our present state of knowledge, there is no way of judging this except by results and
this could be dangerous.

As you are 1'5 and such a diagnosis is still fairly rare I doubt if many DSNs are expert in its management. It seems obvious that
at times when you are not producing any - or very little insulin you need to inject and at other imes mabe you should not be injecting at all but once you are on insulin I supppose it is inevitable that you will be reated as a full-blown T! - and you need more specialised help.

Do you see a consultant? I imagine this present problem will subside in time but you need some advice for when it happens again.

I had a lot of problems a few years ago with huge spikes at times for no reason and fought against insulin for the reasons I mentioned above because my readings in general were in the 4s and 5s and but I couldn't find anyone to believe me, even when I showed hem my meter! Eventually I found someone who explained that the panreas does NOT behave consistenly if it is impaired in any way. Obvious , of course , but many HCPs don't seem o realise that thi is so.

I am very sorry for your difficulties , especially with a new job and hope you can find someone who recognises the particular difficulties of your situation. It is hard enough when you conform to the recognised tyoes of diabetes.

 

[noblehead]

Yes, probably I could buy one, it's the price of them, and I'd get it for more or less free otherwise - not so rich at present. Will try the GP see if she will help out.

Just a bit tired of being treated like an idiot, I suppose.

Thanks, all, noble...

Mileana, if you make a strong case for wanting a half unit pen.....for example citing your low-levels above then I'm sure she won't argue and will see that it will be beneficial to your diabetes management, good luck anyways and come back to this thread and say if you were successful or not.

 

[Mileana]

Yeah, will try. So far the fact that I need 40g carb to one unit of insulin and no insulin has my levels spike to 10 with 15g carb has not convinced them, lol...

 

[Mileana]

Spoke to GP, she would not interfere with the specialists.

Managed to get hold of the endo who was absolutely convinced it wasn't needed. It was all because my basal was too high. So now I have reduced my basal from 17 units a month ago, to 12 until yesterday, where she put me on 4+4. That's a 33 percent reduction in 1 day. Can't wait to see what happens, but I am going to betcha it will be 20's and ketones for fasting levels. Praying to god this flu that goes around here won't catch me at the same time.

Yesterday after that phone call I was proper cranky and gave eff about it all and went out for a giant pizza with friends. A whole pizza. 1 unit of insulin premeal, 1 unit at +1 hour, and my blood sugar stabilised nicely at 5 ish at 3 and 4 hours. There we go then. Anyone care to remind me how many carbs is in a restaurant pizza again?

Oh well, will have to try this. I hope she is right...

Had a great big chocolate scone today after finding my levels at 3.4 and bringing that up with some Pepsi Regular. I make that whole package some nice 50 ish carbs. Had 1 unit of insulin after about half an hour when I caught it at 6.5. Two and a half hours later, I was passed out on the floor of the shopping centre - suddenly couldn't feel my feet or the ground, didn't know what was up and down... I knew it was coming, was munching away at candy to the best of my ability, but only had about 3-4 minutes from the 4.2 to the time I hit the floor... Excuse me, but sometimes I get scared I'm just going to die. And I really would like to not have to stuff my head full of that stuff... 4 units of insulin today. 4 hypos. Area of 200g carb.

Maybe it's true - maybe I don't need insulin anymore? I just have been on a fairly sensibly adjusted basal/bolus for 6 months time - and it feels like if I don't, I will die. And if I do, I will die too. DKA or diabetic coma, which one do you want? Umm, that's a bl*'dy hard choice, when do you need to know?

 

[angieG]

Hi,
I was re-diagnosed type 1 in August after being a 'type 2' since Nov 2010. My DSN suggested I start at 6 units of Lantus at night and see how it went and so far I've been fine. So maybe the smaller dose is the answer.
HTH
Angie

 

[Mileana]

I hope so. The problem is that I've lost weight which of course will make insulin work better, but from when I was at around 25 units a day total till now, I've not lost more than 5 kgs (just shy of a stone). I feel like my pancreas was more or less dead a month ago, and now suddenly it works, I guess. On some days.

I guess I should be happy about that, but I was diagnosed from a DKA situation, and I know I have antibodies which will eventually kill my pancreas. It feels like choosing between being eaten by a lion and be fed to a tiger...

I guess I have just been conditioned to think that if I don't take insulin, I will die or be in a very bad place. That's what being insulin dependant is, I guess. I was not very shocked by the whole type 1.5 diagnosis. Right now I am pretty shocked at the idea that I should stop taking meds that keeps me alive.

So far, it's going okay - last night, a minor low at 10 ish, 15g carbs stuck into that hole. That should turn into blood sugar of about 7 if my maths is correct. At midnight however, it was 5 again. So before going to sleep, I had another 15g... Woke up this morning with fasting glucose of 5.8. Not brilliant, but not too different from my normal, so it may be true... Will see once the adjustment kicks in entirely.

It's just the mind, I guess. I had insulin because if I didn't, I would have died... It's worse to come off it than be put on it... And it's somewhat illogical that 5kg and a dying pancreas can suddenly decide they want to work together and make everything okay! Mind boggles, really.

 

[Unbeliever]

I hope things have settled down for you Mileana. Although I am not on insulin I strongly suspect i could be 1.5 as I said earlier in the thread. It takes SO little to put my sugars out of kilter. Some unexpected events over the weekend resuted in bad hypos and then enormous spikes.
Neither of which is good for my retinopathy , maculopathy etc but I just kep theinking "Thanlk Goodness I am NOT on insulin" as the consequences could have been so much worse..
I can totally understand your constant fears and laclk of confidence abou it all. I hope it has all settled down now.

 

[Mileana]

Am on 9 units of long acting now. Fasting glucoses are not pretty. I'm not content with fasting glucose of 7 from a go-to-bed level of 5.5, really. Bit many spikes over 'nothing'. Doesn't feel right here either. And the hypo's are smaller, but still present. Will consider collecting my 4+5 dose in the evening maybe. Bit lost at present, but I guess it's better than it has been.

Insulin carb ratio 15g mornings, 30g evenings, still not very easy to aim properly with that sort of increments.

Thanks, UB.

-M

 

[Mileana]

Just an update for those old people who are still here.

A few days ago, I was told to stop my insulin. It doesn't quite work. However, I have lost so much weight and quit smoking that from the original 45 or so units, I am now down to no basal and today was 2 units of NovoRapid.

Today, I've had 150g of carbohydrate. I could probably have gotten away with 1 unit of insulin if I hadn't had a mad desire for tortilla wraps. Yesterday, I had a total of 75g of carbs, still had to have 1 unit to drop the levels from 9 ish at some point during the day.

I think I will end on 1-2 units of Levemir and 1-2 units NovoRapid for a while now. I can't quite get away with no insulin - my fasting levels want to slide upwards and anything above 15g carb/meal makes for a giant spike (12-17, I had to try and see). I would still have been very very pleased to have the half unit pen, but I am not getting it, it seems. That sucks, but oh well.

Honestly needing ONE or TWO or THREE units of insulin a day is almost silly. I guess it does mean that with this progressive degeneration of my pancreas, that I've done a pretty darned good job at the weight loss, smoking stop and exercise/insulin resistance though. So yay me!

Just wanted to update this post and check the new forum lay-out. And say hi, I suppose.

Take care, all.

 

[notafanofsugar]

Keep going with the weight loss - great work. And more kudos more quitting smoking! x


Sent from Diabetes.co.uk Forum App

 

[smidge]

Hey Mileana!

That's brilliant news. Well done! The insulin requirements will probably creep up over time. I' m on 8 Levemir now and similar Apidra, but started out on similar doses to you. Hopefully your progression will be very slow now that you've cracked the insulin resistance and just have the LADA to deal with

Take care

Smidge

 

[desidiabulum]

Hi Mileana -- great news that you've got things so well under control. How's the poetry nowadays?