First clinic appt tomorrow - nervous

[lauraw1983]

I have my first Diabetes Clinic appt tomorrowmorning, I should probably be sleeping now yet here I am....I feel nervous about it.

I have a list of questions, because quite honestly I have not been speaking to the DSN as much lately because I knew this appt was approaching...I just feel really lost with it all again.

Dunno if my pancreas is just giving up more or what (likely I guess), but my levels are still not low enough, especially on waking, rarely below 7,normally below 10 though. I presume I need more basal but they have never told me what to do with this properly - I imagine they might tomorrow.

I feel because I was never in DKA fully when admitted, and they first tried to say I was Type 2, I was never given enough information about insulin - I have learned more from here and my own reading and research tbh! 😱

I have a stinking cold too which is not helping matters, and had a hypo today (had a long walk with the kids!) and feel pretty rubbish after that.

Sorry to moan. I don't think my HBA1C result will be good at all because of how much my levels have fluctuated, it was 9.0 when I was admitted to hospital....

Blah, we shall see tomorrow I guess!

 

[ukjohn]

Good luck for tomorrow Laura, I bet you will be pleasantly surprised with your results tomorrow, my guess at your HbA1c will be in the 7 range..

John.

 

[Sheilagh1958]

Good Luck Laura

 

[Northerner]

Good luck Laura, I hope you managed to get some sleep! Try not to worry about what your results might be - whatever it is, you have done your best under very difficult circumstances. No-one is going to 'tell you off' for not getting perfect figures - or at least, they shouldn't, because you are still very much in the early stages where you are still learning and adjusting.

I hope it goes much better than you fear, and that you get answers to all your questions. Why not write the main ones down before you go so that you don't forget to ask - remember that diabetes is largely a self-managed condition, so don't just listen to what they say, drive the conversation yourself and ask for clarification of anything that you don't understand.

Good luck! 🙂

 

[Freddie99]

Ah good luck with that. I'll send you a message with my number in if you get nervous and need a chat.

Tom

 

[vince13]

Hope all goes well with your appointment today and that you get helpful answers to whatever is worrying you to help you control the Big D better.

 

[Twitchy]

Hope all goes really well at your appt - write your questions down & be firm about making them explain & if necessary re-explain anything you don't understand - after all, your diabetic care should be a team process and it's in eveyone's interests that you understand. 🙂

All the best, Twitchy xx

 

[imtrying]

Hi Laura.

I hope you managed to get some sleep last night, and I hope your appointment goes well today. It sounds like you know what you need to be saying to them, which is a good thing.

I reckon your HbA1C will be better than you think 🙂 and even if it's not, you know where the problems are and your diabetes team needs to help you improve that.

Have you been on a carb-counting course?

 

[lauraw1983]

Well after waiting about for stupid amounts of time, got home a while ago.....some positives and negatives really.

I didn't see the consultant I saw in hospital which is who I thought I was going to see, and who was on my letter for the appt....saw some other Dr who, to be quite honest, was pretty useless.

Said he had a quick read of my notes before I came in, then proceeded to clarify I was Type 2. Err no. And then went on to say "but you're not on insulin, are you?" Errr yes. 😱 He couldn't answer most of my questions really 🙄, I am currently on 15u lantus at night and I asked about my fasting readings still being a bit high....he was looking over my meter readings and said "you're not that high often, don't worry too much" and then said "how about putting the lantus up to 18 and see how you get on". Not quite sure where he plucked that number from but there we go....I have been increasing it by 1 unit a time over the weeks, is that wrong?

I asked about injection sites, about rotating them and I had a specific query about my tummy because my two lovely babies left me with LOTS of stretchmarks on my tummy, and I genuinely wonder if this might cause any absorption issues etc because it is scar tissue in effect....? He didn't have a clue!

Said 12-18 months for a carb counting course/DAFNE. I do not understand how they expect people to control their diabetes well without this basic information?!?! It's impossible really with MDI. I want the tools to be able to control this well myself, yet seems it will be a battle/waiting game. Sigh. For the moment I am sticking with roughly 10g to 1u.

Anyway the all important numbers......HbA1C is down from 9.0 (75) on diagnosis to..........7.3 (56) !

He did say "clearly you are doing something right here!" and said that was a good improvement in the time I have been diagnosed. So there we go for now....

Oh and no foot check as they were too short staffed.....🙄

My DSN was busy but I have made an appt to see her on the 21st to ask her these other things and see if we can get anywhere getting my basal right?! Oh the Dr also looked at me like I had 3 heads when I asked if I should be doing a 3am check of it......he said no, if you were going low it would wake you up and that he's never heard of testing at 3am!?

 

[shiv]

Sorry you saw someone not so helpful!

Re: upping the Lantus, I would stick with increasing it by 1u at a time. A jump from 15 to 18 is an increase of 20%, quite an increase! It might be worth testing in the night too a couple of times, to see how it's holding you overnight.

Unfortunately there is often a waiting period for carb counting courses - I completely agree with you in that I struggle to see how MDI/pumpers can go without such valuable information (that isn't to say of course people can't learn from their own initiative, but courses like this are always hugely valuable to those who go on them).

hba1c drop is fab well done 🙂

If the consultant has never heard of a 3am test, personally I'd run screaming from the building. How can he be a consultant and not understand that overnight is a long long time and you wouldn't go for 10 hours without testing during the day so why would you at night?!

Not everyone wakes up from night time lows. I don't wake up until I'm in the 2s, and some people just sleep right through them. There are of course then the people who go low and don't wake up, rare as it may be, it can happen. If you want to do 3am tests, do them - don't let his attitude stop you. The 3am tests can give you really valuable information about what is happening to your levels overnight.

 

[ukjohn]

HbA1C is down from 9.0 (75) on diagnosis to..........7.3 (56) ![/B][/QUOTE=]



Can I boast and say, I told you so.😛 I said in my post above that I thought you would be in the 7s 🙂 Well done on that, it shows you are doing something right

John

 

[imtrying]

Well after waiting about for stupid amounts of time, got home a while ago.....some positives and negatives really.

I didn't see the consultant I saw in hospital which is who I thought I was going to see, and who was on my letter for the appt....saw some other Dr who, to be quite honest, was pretty useless.

Said he had a quick read of my notes before I came in, then proceeded to clarify I was Type 2. Err no. And then went on to say "but you're not on insulin, are you?" Errr yes. He couldn't answer most of my questions really 🙄, I am currently on 15u lantus at night and I asked about my fasting readings still being a bit high....he was looking over my meter readings and said "you're not that high often, don't worry too much" and then said "how about putting the lantus up to 18 and see how you get on". Not quite sure where he plucked that number from but there we go....I have been increasing it by 1 unit a time over the weeks, is that wrong?

I asked about injection sites, about rotating them and I had a specific query about my tummy because my two lovely babies left me with LOTS of stretchmarks on my tummy, and I genuinely wonder if this might cause any absorption issues etc because it is scar tissue in effect....? He didn't have a clue!

Said 12-18 months for a carb counting course/DAFNE. I do not understand how they expect people to control their diabetes well without this basic information?!?! It's impossible really with MDI. I want the tools to be able to control this well myself, yet seems it will be a battle/waiting game. Sigh. For the moment I am sticking with roughly 10g to 1u.

Anyway the all important numbers......HbA1C is down from 9.0 (75) on diagnosis to..........7.3 (56) !

He did say "clearly you are doing something right here!" and said that was a good improvement in the time I have been diagnosed. So there we go for now....

Oh and no foot check as they were too short staffed.....

My DSN was busy but I have made an appt to see her on the 21st to ask her these other things and see if we can get anywhere getting my basal right?! Oh the Dr also looked at me like I had 3 heads when I asked if I should be doing a 3am check of it......he said no, if you were going low it would wake you up and that he's never heard of testing at 3am!?

Hi Laura,

Firstly, well done for your HbA1C!! That's great news! And secondly, well done for getting through that appointment 😱I'm not sure I could have managed to stay for that long with his 'advice'!

I'd keep shouting for the carb-counting course. The more you shout, the further up the list you'll get 🙂 (maybe!) I liken MDI with no carb-counting course to someone giving you a car with the keys but you have no license & they won't teach you to drive for another year...yet you have to drive it every day!

how high are you in the mornings generally? I would feel safe taking mine up by 2u but not 3. I guess it would depend how high you are in the mornings, and if they are regularly that high.

re: the stretch marks, they are scar tissue so would have an effect on your insulin absorption. I'd avoid these areas if you can 🙂

 

[lauraw1983]

HbA1C is down from 9.0 (75) on diagnosis to..........7.3 (56) ![/B][/QUOTE=]



Can I boast and say, I told you so.😛 I said in my post above that I thought you would be in the 7s 🙂 Well done on that, it shows you are doing something right

John

Heehee you sure did! I didn't think it would have reduced like that, but as usual for me all I can see is that it's still not quite low enough for my liking!! Lol! 😛

 

[lauraw1983]

Hi Laura,

Firstly, well done for your HbA1C!! That's great news! And secondly, well done for getting through that appointment I'm not sure I could have managed to stay for that long with his 'advice'!

I'd keep shouting for the carb-counting course. The more you shout, the further up the list you'll get (maybe!) I liken MDI with no carb-counting course to someone giving you a car with the keys but you have no license & they won't teach you to drive for another year...yet you have to drive it every day!

how high are you in the mornings generally? I would feel safe taking mine up by 2u but not 3. I guess it would depend how high you are in the mornings, and if they are regularly that high.

re: the stretch marks, they are scar tissue so would have an effect on your insulin absorption. I'd avoid these areas if you can 🙂

Yep the car analogy is good! It is ridiculous tbh.

Mornings have generally been in the 8's....never often below 7, but usually below 10 is that makes sense!

Last night I went to bed on a 5.2 and woke up at 8.7 for example.

My whole tummy (to about 2/3rds of the way up) is stretchmarks........so um.....where am I meant to inject then?! 😱 There doesn't seem to be much information out there regarding this issue - trust me!

 

[Northerner]

It can be very frustrating to end up seeing a 'consultant' who knows less than you do - they should get their pay docked for every (reasonable!) question they don't have a clue about, or give spurious advice about 😡

I also would be more cautious about upping the lantus and do it one unit at a time - the oly thing that would persuade me to make such a change as 3 units would be if it was 10% of my dose, or if I was having hypos in the night. Speaking of which, I would certainly do some 3 am tests whilst you are adjusting the lantus - who knows, you may be having rebound highs from lows in the night. I don't think anyone on insulin should be told that you will wake up as though it's a guarantee.

Hope things go better with the DSN - and well done on your brilliant HbA1c reduction! 🙂

 

[trophywench]

Shiv is spot on re stretch-marks I'm afraid - it IS scar tissue internally as well as externally.

Talk to your DSN about this and SHOW her.

Bum?

 

[Twitchy]

Well done on that HbA1c reduction, that's brilliant!!

Sorry to hear that the doc you saw was such a dope...unfortunately there are far toomany out there!! 😡

I was always told when changing background doses if the dose is going up, tweak by just one unit at a time, if it's going down due to hypos the tweak down by 2 units, in both cases give it a few days to gauge the effect (i guess unless you're going horribly hypo all the time in which case cut back faster for safety). To suggest you would always wake up if hypo is frankly imho dangerous & rubbish. If u'r going to check o'nite, 3am is what we're normally told, so your instincts are good 🙂

I think whilst you are waiting for a carb counting course there's one can do online, (think it might have been run by bournemiuth hosp?!) or you can get books quite easily... I seem to remember being started on 1u : 10g carbs initiallt too, although bmi, activity etc can influence this & some people might need a bit more in the morning with breakfast - afraid that is going to be down to tweak, test for a few days, adjust, repeat! Try & set your background dose first tho, as that can mask your ratios if it needs adjusting. Anither mantra of my docs is 'get rid of the lows to get rid of the highs' - ie when you go hypo it's easy to over correct with food (& your liver kicks in too) & u can swing high after.

Finally - sympathy with the stretch marks!! My tum is a but freaky looking with stripes & pump cannula dots lol...nomire bikinis for me lol! I was told to avoidthe stretch marks...just have to try & move it around as much as poss in the remaining space.

Sorry, huge reply, but well done again on that hba1c reduction, brilliant!!

 

[Twitchy]

Also meant to add when i did dafne years ago the nurse said that one if thd reasons they didnr let people on it til at least a year after diagnOsis was the risk the pancreas still might be having some effdct on sugar levels, not sure if this still the case ( or ever quite right?!) but personnaly xan't understand why they would not want people to have at leadt some idea of what's going on?! 😱

 

[Northerner]

Also meant to add when i did dafne years ago the nurse said that one if thd reasons they didnr let people on it til at least a year after diagnOsis was the risk the pancreas still might be having some effdct on sugar levels, not sure if this still the case ( or ever quite right?!) but personnaly xan't understand why they would not want people to have at leadt some idea of what's going on?! 😱

I had my carb counting course a couple of months after diagnosis, although I'd already started adjusting my doses before then - just didn't know the science behind it! And my consultant thinks my pancreas is still producing some insulin after nearly 4 years, so that theory about waiting is phooey! 🙂

 

[Twitchy]

Aha! Thought it seemed suspect lol!