Fighting for help for over a year

[Drew30]

Hello all, this is my first post on here so please bear with me.

I've been diabetic 30 years now and I'm on lantis (long acting) was once a day now twice and humalog (short acting) each time I eat more than 10g of carbs. Around 13 months ago my blood sugars became completely out of control, I was experiencing very high readings which I would try to correct and these were followed by lots of lows and so began a seesaw behaviour which ruins everyday life.

I went to my specialist diabetic GP with my insulin and food record and she referred me to a Surrey hospital diabeties unit in Jan 15. (Not sure if I should name the unit). Since attending and basically begging for help I have been given advice such as splitting my long acting insulin into two a day which I did, making sure I eat all of my meals which I am trying, try not to get stressed! don't test your blood so much because this could lead to over correcting, that short acting insulin can take up to 6 hours to actually affect blood sugar readings.... Etc etc

Unfortunately this has all been to no avail I am still experiencing highs and lows. Specifically I find if I eat after 8pm I can go to bed at approx 11pm with a reading of say 7.5 but wake up at 7am with a reading of 18. I then try to correct and the seesaw begins again. As you can imagine I'm at my wits end I'm worried all of the time I'm struggling to eat as my blood sugars are uncontrollable (or so it seems) and quite honestly I'm just very scared.

I had little signs of neuropathy prior to this but now it is constant in my feet. I have been begging the nurse to put me on a pump and the reason why I have been told no is that my hb1ac result in Jan 15 was surprisingly good and as such I had to prove my control was bad for the clinicians to even consider applying for the funding This has taken me 10 months to do which has been hell. I have a loving wife and two children aged 7 and 5 who have had to deal with a dad who is clearly stressed withdrawn at times, upset at times and showing clear signs of depression such as insomnia (Hence the writing of posts at this time).

I have been approved for the pump by the clinicians but funding still has not been obtained + they are unable to get it and give me the training before Jan 16. I still have not been given a date for the clinic but I was approved weeks ago. My nurse has been no help at all to be honest she has hindered the whole process giving me conflicting advice at times and telling me that I am overreacting. I have made myself a nuisance asking lots of questions such as why does it take months to arrange the pump clinic but I am now facing little to no response and I am at a loss as to what I can do apart from wait. Unfortunately my nurse is the only person who does these pump clinics and I'll leave you to come to your own conclusions on why it takes me months.

I am aware that children who are newly diagnosed are put on pumps straight away at the same hospital so I do find it hard not to feel aggrieved to have been treated in the manner I have.

I'm not sure I have a question apart from does anyone have any advice for me. I feel very alone and that I'm fighting the system begging to be looked after after 30 years of trying to do it myself.

Thanks for reading any response would be most appreciated.

 

[tim2000s]

@Drew30 Two things spring to mind. The first is if you have not yet been approved for pump funding, try getting in touch with Input and explaining what is going on. They may be able to help.

The second is your reaction to Lantus. The symptoms you describe sound very similar to those that many of us have experienced due to some of the absorption issues that Lantus has. It might be worth simply asking to change your basal insulin to Levemir. When I did this I found I had a massive improvement in my levels.There's some discussion of it here.

 

[azure]

Hi Drew - sorry you've been having so many problems. A sugar rollercoaster like that is horrible - and extremely frustrating when you're trying to get control but can't.

@tim2000s has made a good suggestion about possibly trying Levemir.

I'm presuming you carb count? It may be worth checking your insulin to carb ratios for each meal. They can change over the months and years.

I sympathise with the late evening meal problem. I find it harder to control my blood sugar if I eat too late too. I try to eat around 6/6.30pm and if I have to eat late, I tend to go for a lower carb meal (lower not no carb) so that my insulin dose is more likely to be correct. I also sometimes set an alarm to test in the night so I can spot any issues.

I really feel for you, having to wait so long for a pump. It does take a while (check out the Pump Forum here) but I can understand how stressful it must be waiting.

You say your control became worse about 13 months ago. Is there any reason you can think about why that happened?

 

[Juicyj]

Hi Drew,

I agree with all of the above - very good advice.

If your basal - Lantus isn't working then it is worth changing your background, I had same issues with uncontrollable levels, which i managed to get under control by switching background insulins. I was basically increasing my doses but with no effect on my BG levels, then changed over and am pretty much under control now.

I also don't eat after 7.30 at night for 2 reasons, firstly because I always wake up high, secondly because I can do a correction before bed so i do wake up in my target range, so make a plan to eat earlier, I think it's the time it takes for your body to digest food which affects your BG, slow digestion, another beautiful by-product of type 1 !

Record your results too this is really important - use an app like diaconnect on your phone, by recording results you can track patterns and act on them - Diaconnect is a good one as you can email results direct to your team to relay what's happening which will help them see what issues you are facing.

A couple of other things - quick acting ratio's can vary for everyone. I take more QA in the morning per 10g of carb, then in the afternoon I drop my ratio so i'm 1 unit to 10g of carb. Secondly the time it takes for your quick acting to work also varies per person, I find that mine starts working within about 30 mins but will be out of my system in 2 hours, so if I correct it's 2 hours after taking my insulin.

Try not to fret if you can, the stress of managing this will also affect your BG levels, so try to take it in your stride, it does take a while to adjust and get back on track but i'm sure with some tweaking you will get there.

 

[Daibell]

Hi. I agree it may be worth trying Levemir. Whilst Lantus is fine for many and is very common, NICE now suggests Levemir as the default insulin and it may be worth trying it?

 

[Drew30]

Hi all
Sorry for the delayed response I've been busy with a new pump, sinus surgery and a broken wrist! Thank you all for your kind feedback on my first post it was hugely appreciated. I changed a number of things including taking the advice not to eat late, this helped improve BG readings and reduce the dramatic swings almost instantly.

Earlier this year I was given a pump and attended a course which was for one day at the hospital and told to go away and try the pump. I had a follow up appointment which lasted an hour a week later and that was the grand sum of the time (training) provided. This simply was not enough and I have struggled to get what I would consider good control and I'm still not comfortable with whether to adjust the bolus or the basal.
I'm reading a book by Dr Bernstein (the complete guide to achieving normal blood sugars) it's early days I've only just started but wanted to ask if anyone had tried his methods and if it helped. Alternatively if anyone could recommend decent training or material to help a new pumper?

Thanks again and I'll not take so long to respond next time..

 

[catapillar]

Morning @Drew30 , I think a lot of pumpers on the forum would recommend Pumping Insulin as an excellent guide on how to use the pump and make adjustments

https://www.amazon.co.uk/Pumping-In...id=1468987742&sr=1-1&keywords=pumping+insulin

 

[azure]

Thanks for the update @Drew30

Yes, it's surprising how much a simple change like eating your evening meal earlier can help.

What pump did you get?

I agree with @catapillar 's recommendation above. I'd also recommend Think Like A Pancreas.

 

[Drew30]

I've got the Medtronic Minimed 640G. Due to the problems trying to get control I've been thinking of paying for the continual blood glucose sensors they are extremely expensive but I think it may help. The nurse at the hospital told me not to buy them because there is a chance that I will qualify for them on the NHS if/when the NHS decide to fund them but she had no idea how long this may take!

Does anyone have any views on the sensors?

Thanks for the advice re the books I'll order them right away.

 

[richyb]

hi Drew you think you have had it bad.
Been type 1 for 50yrs. was referred by my GP for a pump. 8months ago. The nurse changed my insulin a few times and I still don't have a pump. after 50 yrs as type 1
Done DAFNE
A lot of laser in both eyes.
Bad injection sites causing slight pain(fewer available sites than most due to frozen shoulders which I have had for 20yrs)
Frozen joints
Basal changes about every month.
keeps record of my results, (good Hba)
been issued a bolus meter which I have mastered
A little depressed now due to lack of help
I have made a complaint about my poor treatment but so far nothing. QCC. are useless
input are helpfull but still nothing.
Alway's worked and operate dangerous unguarded machinery (hypos not good to have)

you got one after a mere 30 yrs as type 1.
Nurse is putting me forward for one, but if there is no progress on my next visit I am going to name the authority. I would get better treatment in INDIA.