Consultation Appointment

Tracie1212

Well-Known Member
Messages
138
Type of diabetes
Type 1
Had my long awaited appointment with Endocrinologist. First question asked was what's the best thing about your diabetes? Considering I was there due to continuing ill health found this a highly unusual question and very different to other past consultations with other medical professionals.

Consultant didn't even know I'd been in hospital with DKA in June. Didn't understand my recent severe hypo. Had quite a few interruptions then found out DSN had asked to be involved in consultation which would have been invaluable and he forgot.

I asked for half dose pen and was advised not proven they work. However I'm on half dose pen for novorapid which does work!!

Had a load of blood tests taken await results. Feel really disappointed didn't get to ask questions and have discussion I wanted.

Get better advice in here I feel

Next appointment 6 months.
 

Juicyj

Expert
Retired Moderator
Messages
9,018
Type of diabetes
Type 1
Treatment type
Pump
Dislikes
Hypos, rude people, ignorance and grey days.
Sorry to hear that @Tracie1212 - half dose pens do work so that was complete nonsense and as for the appointment itself, ignore and move on, I tend to take mine with a punch of salt and with no expectations. I was disappointed with my appointments after my diagnosis, didn't feel I got anywhere so decided to change my approach to them so now if I have questions then I take a list with me but also accept I know what works and what doesn't and if it contradicts my knowledge then I research it after the appointment to test their advice. I also asked questions like 'what would you do in my shoes' which helps them to visualise the practical aspect of their knowledge.

Support is vital though in whatever shape that takes, forums, DSNs, consultants so do lean on these to help keep you on track.
 
  • Like
Reactions: becca59

Tracie1212

Well-Known Member
Messages
138
Type of diabetes
Type 1
Thanks@JuicyJ

I agree and do make lists and ask if it were them what would they do. The Consultant liked the sound of his own voice not a good listener at all.

Thanks for advice I am moving on and always have a plan in place. Probably on plan z now. Sense of humour still in place.

Yes definitely need their support and I will be writing to Consultant listing my recent experiences and asking for half dose Tresiba pen and mention that if they are not proven to work why are they available? I use half dose Novorapid pen and that makes a difference. I am 5ft 2 and small frame.

As mum used to say power of the pen...

Thanks for listening

Tracie
 
D

Deleted Account

Guest
Just a thought - as the DSN had asked to be involved but wasn’t, could you ask her for a one to one appointment before your next 6 month consultant review?
To be honest, my DSN knows far more than any consultant I’ve met.
 

Tracie1212

Well-Known Member
Messages
138
Type of diabetes
Type 1
Thanks@Helensaramay

I have DSNs telephone number and stay in contact including one on one appointments. They have regular nurse led clinics.

Last conversation with nurse went similar to Consultants they do not think half dose Tresiba pen will make a difference. Nurse wouldn't commit on me rotating doses said not her decision to make

My feeling is if I don't try how will I know. 20 units sends me low, don't feel well on 19 so switching between doses.

I also feel Tresiba overlap may be causing lows will need to address that at some point. They make me feel that this does not happen to anyone else. My research proves it does.
 

Circuspony

Well-Known Member
Messages
959
Type of diabetes
Type 1
Treatment type
Insulin
I'm a similar build to you and have a 1/2 unit pen - & it's really useful!!
 

Daibell

Master
Messages
12,642
Type of diabetes
LADA
Treatment type
Insulin
Hi. Can you clarify what you mean by overlapping doses? Is that because you split the daily dose and think they may overlap a bit? Although there is nothing wrong with a half-dose pen which I use for my Novorapid, I only use a full dose pen for my Levemir Basal merely because it's an old pen. I can't believe having 19.5 rather than 19 or 20 units will make any difference for a Basal? Can you also explain what you mean by rotating doses?
 

Tracie1212

Well-Known Member
Messages
138
Type of diabetes
Type 1
Not an expert on Tresiba going on what Consultant advises and my personal experience of going low every night.

I drop 6 to 10 levels every night have reduced Tresiba to 19 units. I have to eat bread and jam every night to prevent hypo of 2. Starting to dislike jam.

Tresiba is linear I'm told and lasts upto 40 hours. Consultant says potent for 28 hours.

So in theory if I am injecting every 24 hours the overlap will be for 4 hours and more potent hence hypos.

I believe half dose pens can make a difference to my health. They are available so must work for some like Circus pony.

Thanks.
 

Circuspony

Well-Known Member
Messages
959
Type of diabetes
Type 1
Treatment type
Insulin
I'm very insulin sensitive plus my honeymoon period is gradually coming to an end. Increasing tresiba by whole units was giving me problems so they gave me a 1/2 unit pen.
 

Tracie1212

Well-Known Member
Messages
138
Type of diabetes
Type 1
Thanks@Circuspony.

I've been on Tresiba for a month it was great at first then the hypos started. Whole dose adjustments are not working for me. Hope I can persuade the Consultant to let me trial half dose pen.
 

EllieM

Moderator
Staff Member
Messages
9,208
Type of diabetes
Type 1
Treatment type
Insulin
Dislikes
forum bugs
So in theory if I am injecting every 24 hours the overlap will be for 4 hours and more potent hence hypos.

Could you change your injection time so that the overlap occurs when you're awake and can be controlled by having less bolus for whatever meal it occurs during?
 

becca59

Well-Known Member
Messages
2,856
Type of diabetes
Type 1
Treatment type
Insulin
I tried alternate dosing 9/10 for my Toujeo. (Consultant suggested it) unfortunately it didn’t help me. It would be worth a try though.
 

Tracie1212

Well-Known Member
Messages
138
Type of diabetes
Type 1
I've moved injection currently to 1pm but levels drop from 2am 4am then 6am. I am going to try move Tresiba to breakfast time.

I go to bed on level of 14 and it drops through night. if anyone can suggest what I could eat before sleep that will stop me going hypo or having to wake and eat during night all suggestions welcome.

I am alternating dose 19/20 but no joy yet.

Thanks everyone for your help.
 

kitedoc

Well-Known Member
Messages
4,783
Type of diabetes
Type 1
Treatment type
Pump
Dislikes
black jelly beans
Hi @Tracie1212, As a T1D, not as professional advice or opinion. And I am not wishing to criticise any insulin just pointing out about how an insulin's action, dosage etc needs to be tailored to the person, not have the person being a contortionist to fit in with what the insulin is supposed to do or what the HCPs think it should do.
As I recall you have been experiencing a number of health troubles recently. One would think that with such troubles one would need one to have some flexibility in one's insulin doses and types.
My view on insulins reputed to last greater than 24 hours and nearer perhaps 36 hours in some people, and it is a personal view, is that it is so long acting that any correction in dosage might take days to show up. That is fine if day to day one's life is fairly even and the combo of short and long acting insulin balances things nicely But long-long acting insulins could likened to a very long ocean liner that any move of the steering wheel takes ages to show a change in direction.
Add to that how does anyone know if these insulins last 28 hours in everyone or longer maybe? Just because the drug company blurbs might say 28 hours (and doctors and nurses might have read that) does not prove it with everyone. What if it lasts say 32 hours so that there is an overlap of say 8 hours with yesterday's injection of long-long acting insulin? The dosages might be stacking up making hypos more likely.
My endo and diabetes nurse are always concerned that my diabetes control does not lead to recurring hypos, particularly at night
.
Hypos, they both say, are more immediately dangerous than the high blood sugars. And your endo is saying put up with this for the next 6 months??
Yes, I agree that whilst tiredness from recurring hypos would certainly tire me out that other things need checking.
BUT - would your nurse perhaps listen to you about having a more flexible regime? You know that fiddling with your current long-acting insulin is not getting you anywhere fast except for further hypo risk.
Recurring hypos is one very legitimate reason to consider an insulin pump for example where at least flexibility is easier (usually)!! to achieve and hypos to be prevented ??
And those of one a pump know that the basal insulin requirements vary say between morning and evening. One cannot as easily 'tune' one's long-acting insulin to account for this. Or perhaps a less long acting insulin which can be altered more easily to prevent hypos at night.
Also, my view, is that some. not all, doctors and nurses like to try new things - not on themselves but their patients!! There is the thought that being newer it should be better. But that is like saying that the new product is a fancy glove, if it fits perfectly well and good, but if it does not why try to have one's hand forced into it when it does not fit?
And is expecting you to undergo another 6 months of battling away on this long-acting insulin, just to 'deserve' say a pump or change to another insulin whilst hypos reign, a fair thing for you? The doctor and the nurse are not inconvenienced or facing evenings/nights with dread, are they?
Please consider what I have said as thoughts with which to decide if you wish to challenge the current situation you have been relegated to. It is just a point of view, that we are individuals each with different needs and our individuality needs to be fully acknowledged by HCPs.
Time does not always heal if we are placed on the wrong track. If you have someone who could advocate for you that might also help. I do not have that local knowledge but ? advocates for people seeking pumps or seeking redress about their treatment maybe??
Best Wishes to a more energetic and less hypo future!!:):):):):)
 
Last edited:

DCUKMod

Master
Staff Member
Messages
14,298
Type of diabetes
I reversed my Type 2
Treatment type
Diet only
@Tracie1212 - Apologies for butting in on your thread (sorry you've had a frustrating time).

I noticed that you're tagging people using the @ sign? That's correct, but you need to leave a space between the previous word and the @ sign for it to work. Without it the tagging doesn't really work. I'll try to demo below:

Like this @Tracie1212 - it works
Like this@tracie1212 - it doesn't work.

I'd just hate you to be trying to do your best, but folks not getting the alerts you intend for then.

I hope things ease a bit for you. I'm sure you'll find lots of on-going support here, on the forum.
 

slip

Well-Known Member
Messages
3,523
Type of diabetes
Type 1
Treatment type
Insulin
I'll stick my neck out and say tresiba isn't the basal for you, although you've only been on it a month, maybe give it another month and see where you're at. If you're dropping that amount over night surely you've got too much IOB, have you done a basal test whilst on tresiba? Out of interest what were you on before and what dosages? and the reason for the change?

Edit to add, I too had a disappointing clinic review last week, it's deflating but at least you're in fairly constant contact with your DSN which is good - and also not had the humour bypass!
 

Tracie1212

Well-Known Member
Messages
138
Type of diabetes
Type 1
Thanks both.

Unfortunately pump did not work out for me so back to MDIs. Before the pump I was on 21 Lantus coming off pump ended up in hospital for a week with Ketones over 2.0. Offered choice of Toujeo or Tresiba opted for Toujeo as advised part of Lantus family. Didn't get on with Toujeo so switched to Tresiba which I find to be a kinder insulin however the lows are getting me down.

DSN told me to use same dose when transitioning from Toujeo to Tresiba. I did express concern that Tresiba seemed to be longer lasting but Nurse was adamant I should use 23 units. Which I did, first few days were great then honeymoon period was over and the dose started to build up. I was running to catch up and reduced to 19.

I did try basal testing but everyday results different and didn't make sense. I think I will have to revisit. I was carb counting changing ratios for different meals. That keeps changing too.

Yes I feel there is too much IOB I have reduced Tresiba from 23 to 19. Feel like I'm stuck in a loop. Feel good on 20 in the day but then at night time it goes terribly wrong. I do feel there is an overlap but how this can be addressed I have no idea.

DSNs are fully up to speed not had any solutions from them. I try and remain proactive because I feel its only me that can find the answer. Hard going though.
 

slip

Well-Known Member
Messages
3,523
Type of diabetes
Type 1
Treatment type
Insulin
With these super long acting insulins any changes can take 3 or 4 days to 'filter out' - and can be confusing bolus changes too. just be methodical.

I'd suggest trying Levemir, and using split dosages, you obviously have different basal needs during the day and night - but you could also go back to lantus split dosed as well if you want but Lantus has a slightly peaker profile.

I would also ask about your injection sites, but you also mention honeymoon so you're not that long in the tooth and hopefully not suffering from any bad injection sites - that can cause insulin absorption issues and inflict more randomness than normal :D
 

Tracie1212

Well-Known Member
Messages
138
Type of diabetes
Type 1
Thanks Slip

Sorry I meant honey moon period on Tresiba I have been type 1 for 18 years.

Nurses and Consultant want me to continue using Tresiba because I have been using Tresiba for only one month. But they don't have to deal with the lows I am getting.

The pattern is 7 hours after Tresiba injection levels start dropping. I tried having my evening meal to coincide with the drop which worked for a few hours. No need for novorapid however at 10.30pm levels started to dip ate cereal bar had terrible palpitations after. Then 3 am started to dip again had small jam sandwich quarter. At 8am level 6.2 and dropping. The level is good on graph but what is not shown is the reality of me running to keep up to prevent hypo.

Ill try injecting in my upper arm in the hope I don't get tingling sensation and palpitations. Nurse and Consultant fully aware of how unwell I feel.

I keep a daily diary monitoring blood sugar levels, carbs and insulin amount injected.

Spend a lot of my nights on sofa monitoring levels and hypo preventing.
Luckily I have my little Yorkshire terrier to keep me company.
 

slip

Well-Known Member
Messages
3,523
Type of diabetes
Type 1
Treatment type
Insulin
How long have you been on the 19u of tresiba now? TBH if it was me I'd drop another 2u and stick with that for a good few days even a week.

I tried having my evening meal to coincide with the drop which worked for a few hours. No need for novorapid

What did you have to eat and how many carbs was it? did you blood test before and after? or using the Libre or CGM?