• Please Remember: Members are only permitted to share their own experiences. Members are not qualified to give medical advice. Additionally, everyone manages their health differently. Please be respectful of other people's opinions about their own diabetes management.
  • We seem to be having technical difficulties with new user accounts. If you are trying to register please check your Spam or Junk folder for your confirmation email. If you still haven't received a confirmation email, please reach out to our support inbox: support.forum@diabetes.org.uk

Clinic Again Today

Status
This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
T

Tina63

Well-Known Member
Relationship to Diabetes
Parent of person with diabetes
This afternoon my son has his next clinic appointment. Interested to see what this one brings, though I can't go, his dad will be taking him. Whether I find out any information afterwards remains to be seen - I suspect not. Last HbA1c was 12.2 with a threat of admission. Only a lack of beds saved him last time.

Really not sure what to expect this time. He hasn't done any BGs for the last week, and only sporadic ones for the weeks before that. His DSN has been tweaking his doses week by week but he was very negative about upping his Lantus a couple of weeks ago so I don't know whether he did or not and nothing has been changed since then as he wasn't doing BG tests to give any useful information. He has been regularly skipping his afternoon Humilin S injection for the past couple of weeks, with just the odd exception, and though I have notified his DSN of this, there is little either of us can do with this knowledge as I only know this by checking his pens daily. She has just said that she will make sure he sees one of the consultants today.

Despite all this, he has I suspect been having hypos this past week or two. The dextrose tablets are disappearing at a rate never seen before, unless of course he has just discovered he likes them after all and has started eating them whenever he fancies - wouldn't put that past him actually. I know the heat has been affecting many people, so assume it's that, but then if that helps improve his HbA1c it will appear things are ok, when they are very obviously not. He came in from work yesterday in a foul mood, and was completely non-communicative, but did suddenly start talking after dinner. Maybe hypo then - who knows!

I will report back when I have any news!
 
Hi Tina, sorry to hear that he is still evading testing and injecting. If he's having hypos then if only he understood that by regular testing and learning to adjust his insulin appropriately he could avoid most of them and feel much better! It would appear that his idea to avoid hypos might be to stop injecting or following the advice of the DSN, but it sounds like that's not working. I hope that he comes away from the clinic with a determination to improve things 🙂
 
Hi Tina, this does seem to be continuing down the same path - poor you, do we ever stop worrying about/loving our children, however old they get ? I guess not.

Hope your news later today is a little more positive for you - it seems the medics are going to have to take him in hand, after all you can't MAKE him do anything and presumably they can, even though it's his life he's endangering.
 
My husband is collecting my son from school and going straight from there this afternoon so I handed him his diary (with very few entries) and his HbA1c test tube thingy saying he would need to take them with him this morning, and he straight away admitted to me he has not been using his Humilin S as often as he should, saying he had his excuses ready!

I asked what his excuses were. He said that he was told it had an 8 hour active period, so the days he was going out straight from school and not coming in until dinner time (a group of them have been out kicking balls around and generally socialising) he was not then prepared to sit up until 1 or 2 in the morning just in case he needed to have anything else to eat. I did point out that they did say on days he works late (Saturdays mainly) they did advise he reverted back to Novorapid on those days so he should just do that and his reply was 'It's up to the medics to make that decision, not you!' He didn't say it nastily, but he doesn't seem to have thought it though.

He has confirmed he has been having hypos, mainly at work in all this heat, 2 on Saturday, one yesterday, and some on the evenings he has been out. All that without the Humilin S (16u), I dread to think what would have happened with it. The testing does seem so vital at the moment in this heat. Still, the cool air and rain is back later in the week I believe........
 
Really hope they can penetrate the brick wall this time Tina.

For your sake as much as his. You really don't deserve to go through it all.

Rob
 
Hopefully, they will remind him that diabetes management is 99.9% down to the individual, so a person with it has to take responsibility and not rely on 'the medics' to make his decisions for him - does he really want to be so reliant on them all the time, struggling when he doesn't have immediate access to sort out every little change? With diabetes, there's no point in having excuses to explain poor behaviour. Having reasons why things occasionally go wrong is fine, but excuses are self-defeating :(
 
Hope his appointment goes well Tina, and more progress is made.

Of course, there's no way of knowing whether he *is* actually having hypos recently, or just getting hypo symptoms. They feel just as rotten and scary, but if he has been missing insulin doses as suggested and his levels are regularly higher than the 'normal range' he may well be having full-on hypo symptoms while still significantly above 4.0mmol/L.

The only way to know for sure is to test.

All sorts of other physiological phenomenon can also make me feel disctintly hypo-ish (including being hot, a bit hungry and active). Additionally I am far more prone to 'fake hypos' if I think I might have slightly overdone the insulin/miscalculated a meal (which I guess is how your son feels every time he takes his insulin)

And treating the hypos that never were will just keep those levels up... which means the symptoms still ring out loud and clear when levels come down towards 'normal' and round and round you go...
 
Last edited:
Good point Mike - if he's not testing, how does he know he's having true hypos? :(
 
Hope the appointment goes well Tina x good luck to all.
 
Hope things are ok. Thinking of you all. Xx
 
Hope the appointment went well Tina xxxx
 
Well he has come home bright and happy. He did talk to his dad a fair bit on the way home about the consultation, but my husband didn't go in with him (he doesn't like us going in anymore). He didn't see the consultant, but the registrar he saw last time, who apparently has a 'special interest' in him.

HbA1c down to 11.0. Was 12.2 last time a month ago, and 12.5 a couple of weeks before that, so going in the right direction.

I don't have a clue whether he told them about his non-compliance with the Humilin S, all he said is they have said it's obviously working, so to carry on what he is doing(!) Not sure I totally agree with that, but I must say that though some of lower HbA1c must be to do with the hypos (whether true or just near hypos), they had through the month upped his M3 and his Lantus, so I guess some of that tweaking must have helped too, whether or not he is taking his teatime dose.

I was going to re-order his prescription items this morning, but decided to wait until he got home in case of changes, so I asked him and he said could I please just re-order everything. I asked if that included Novorapid, he said, 'I repeat, please re-order everything.' So maybe they did discuss going back to Novorapid in the evenings. I will check his pens over the next few days and see what I discover.

So, I don't really know what I feel right now, I don't think anything major has happened, he has just been lucky to have got away (yet again) with not doing things properly. For that, I feel a bit miffed as nothing is going to change from his side, but of course once the cooler days come back his levels will probably start soaring again, so he may not get away with it next time. I don't know if they discussed him testing more again, he has just dumped his meter and diary in the kitchen, but until I receive the follow up letter in a week or two, I won't know the real full details.

He is to go back in a month again, though we have to wait for an appointment letter, so at least they are still keeping a close eye on him. I guess that's what I have to be grateful for at the moment.

Tina
 
Thanks for the update Tina. As you say, difficult to know whether any real progress has been made - I wonder what they had to say about his lack of testing? I hope that, when you get the letter it contains details of positive things that were discussed. Understand you feeling a bit miffed that the hardline approach they appeared to have been taking seems to have evaporated :(
 
Hopefully the letter will clarify things for you ... and hopefully their admin is a bit faster than ours so you don't have to wait too long!! I'm wondering if they are trying 'softly softly' at the moment to keep him onside? Perhaps they've seen how he reacts if they get too heavy, although they must have a view on how long numbers at this level can be allowed to go on without a change of tactics. It's so hard for you being shut out of the whole process now that he's older, but I think it's brilliant that you and your husband are keeping the lines of communication open. I'm sure he's pushing the boundaries big time and it must be dawning on him by now that you will be there for him no matter what. Things are improving albeit slowly ... I expect the doctors have seen this kind of thing before and are drawing on past experience for their approach right now ... Anyway, hope the letter is reassuring but if not, presumably they would be prepared to discuss it with you, even if your son is legally an adult?
 
Status
This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
Back
Top