Author Topic: Happy New Year, but only just!  (Read 477 times)

0 Members and 1 Guest are viewing this topic.

Offline kat

  • Member
  • Posts: 273
  • wind me up & watch me go!!!!!
Happy New Year, but only just!
« on: 28 January 2017, 02:50:58 PM »
Hi there, been a long time since I was on the forum, due mostly to OH retiring and me not having the alone time I needed to keep up!
Believe it or not I am a secretive person, yeah, ok, knew you wouldn't but worth a try anyway!
Up to finishing work the lower carb regime worked v. well, but, post retirement, not so much, due to OH wandering into the kitchen and perusing the contents of fridge and cupboards whenever the inclination took him. Now PERUSING is harmless, indiscriminate scoffing is another thing entirely! lol
So, a few months down the line he is put on INVOKANA,(canaglifozin) more on that l8r!
Another 12months or so and he is put on a very new insulin, brand name XULTOPHY.
ON 29th DEC 2016 he was feeling most unwell he was weak and fainting, first thought, HYPO! No!!! his BG was 14.8, more than twice his normal BG, so, as I had been told, I rang the diabetes specialist centre (not the hospital team) for advice. No-one available but I asked for a call back. NONE CAME!
2 hours  l8r, with more fainting and BG 15.9 I rang again. At that stage it was apparent that my request was  forgotten and no-one had even triaged the call. I was told 'a colleague is looking at it now' the advice was to keep him in bed and give him plenty of fluids. Mmm 
Next morning (30th Dec) OH collapsed in the bathroom, unable to move, first thought STROKE! First action BG, 25.9!!!!
Went to flush the loo and saw blood in his faeces.
Rang 111, thank goodness it was 6am so I was soon speaking to an operator and at the mention of the high BG and the blood she dispatched an ambulance immediately. The crew took his BP and it was incredibly low, his BG was higher still and they tested for ketones, I believe that was 4.5. A paramedic was called, arrived in minutes, his assessment was internal bleeding with DKA as a complication. OH had to be given oxygen as he was transported to the resus unit at the local hospital and he was literally dying when admitted. He had blood and platelets before an endoscopy was done which confirmed the upper GI bleed but was unable to pinpoint the exact location.
I left him on the acute medical ward waiting to go for a scan to find the leak.
At 1am on 31st Dec OH was transferred as an emergency to Sheffield, Northern General Hospital, as the bleed was still not located and he had by this time had 8 units of blood and 3 of platelets + other intravenous  goodies.
Northern General foung the bleed and tried to stop it through angio but it was too extensive. Surgery was the only chance and I was warned that it was possible he could not be helped, even if they could stop him bleeding the risks of abdominal surgery were not to be underestimated.
The surgeons found that there was some kind of diverticular disease which was in the jujenum, the first bit of the small intestine. As far as they could be sure that was the root of the problem, we were told it was definitely abnormal and it looked like the only likely culprit and that he would be monitored closely for any drop in BP alerting them to further bleeding.
Now, the point of all this.....
Patients taking CANAGLIFOZIN, according to the FDA, are liable to have DKA when their BG is not at a level when it would normally be suspected. This I think is something any Diabetes specialist should know, they must know that T2s aren't told about ketones. IMHO this is a lapse of judgement. Had I known, had I had a way of testing for ketones, I would have had him in hospital straight away. It is my belief that had the triage been done properly and the canagliflozin taken into account then the nurse would have visited and seen how ill he was, or would have asked me to take him to hospital where the underlying problem would have been found 18 hours earlier.
My husband was practically dead in my arms, because T2s are only warned about hypos.
Now we wait to see the surgeon on 23rd February to find out if there is liable to be any recurrence of the. diverticulosis.
 We have been so lucky, from dialing 111 that morning everything lined up right. If one single thing had been different it would have been too late.
If anyone has the patience to read to the end of this it's a warning, get some ketone test strips, (yes Patti, doc prescribed them as soon as OH was discharged) OH has ketones when his BG is 13.5, we test  with the new meter that the hospital diabetes team gave us now tho as urine readings are about 2 hrs behind blood readings. Also OH said he had a metallic taste in his mouth a few days before he was taken ill. Hospital spec. nurse says that was also an indication of DKA.
Knowing any of this could have been the difference between life and death, also, being diabetic actually is what probably saved my husbands life.

footnote. 2 days after he came home we saw what we thought was blood, again. Rang 111, woman was dismissive so I said if I was worried I would ring 999 she said they would only pass it back to them as they were really busy. My response was that in light of what had happened I didn't think so! So she said that I could speak to a clinician  He insisted that if he was bleeding from as high up as the jujenum then he would be vomiting blood, not have blood in his faeces. Told him I knew the difference between blood and faeces and that the surgeon who did the op knew he had not vomited blood prior to the op. Told him we might need to get his BP checked if we thought there was a problem. Told we could go to the ER drop in clinic BUT ONLY BY RINGING FOR AN APPOINTMENT first!
Thank goodness we didn't encounter this team of clowns at New Year
looking after T2 husband. metformin, gliclazide, lantus thyroxine. Also captopril,

Offline sedge

  • Global Moderator
  • Posts: 13,785
Re: Happy New Year, but only just!
« Reply #1 on: 28 January 2017, 06:15:48 PM »
Good God.

Not much else one can say, really, is there?  Except of course Kat - what a damn good job you had your wits about you - and that I'm relieved he's still with us and I sincerely hope he'll do OK and go on less - er - dramatically in future!

I just Googled for a Patient Info Leaflet and got  https://www.drugs.com/sfx/canagliflozin-side-effects.html   if you scroll down to 'metabolic' it does say that a very very few patients reported what your husband had - but not sure if that's stated clearly enough on the actual leaflet in the packets.  Plus - most GPs prescribing it aren't specialists in the first place - so - what are the chances of being told upfront?  Unless it's a drug that GPs won't prescribe without being told to by a specialist? - who one hopes WOULD tell you upfront .....

Jenny

T1 DX 1972, pumping Novorapid 24/05/11

HbA1c - 7/07 8.7, 1/08 7.8, 9/08 8.4, 3/09 7.3, 7/09 7.2, 12/09 7.3, 11/10 8.1, 2/11 8.6, 9/11 6.5 2/12 6.4  5/12 50/6.7  11/12 52/6.9  01/13 46/6.4  06/16 46/6.4  12/16 45/6.4

Offline Alan

  • Member
  • Posts: 3,154
    • Type 2 Diabetes - A Personal Journey
Re: Happy New Year, but only just!
« Reply #2 on: 28 January 2017, 11:55:43 PM »
A lot to digest there, I'm off to read some of the other info on the links. I'm gald he appears to be OK.

Quote
Thank goodness we didn't encounter this team of clowns at New Year

You certainly had to overcome some dangerous bureaucratic obstacles. Sorry to see that.

A lateral question to consider later. Has he ever been tested for c-peptide, antibodies or any other tests for the possibility of Type 1?
Cheers, Alan, T2, Australia.
--
Everything in Moderation - Except Laughter.
There is nothing I could eat I like more than my eyes.
Type 2 Diabetes - A Personal Journey (latest: Small New York Baked Low Carb Cheesecake)
Born Under a Wandering Star (Latest:Dambulla, Sigiriya and Polonuwarra, Sri Lanka)

Offline Quantum Learning

  • Member
  • Posts: 1,234
Re: Happy New Year, but only just!
« Reply #3 on: 29 January 2017, 11:00:27 AM »
That's shocking, imagine if he hadn't had you fighting his corner. I'm so scared of suddenly needing emergency treatment and finding there isn't any available, think a lot of people are going to be dying before it's sorted (if it can be).

You might be interested in what these people say?

https://www.drugwatch.com/invokana/
Type 2 dx Nov 2012 with fasting BG 14%/129.5
HbA1c Jan 2013 79/9.3%
April 2013 50/6.7%
July 2013 39/5.7%
Oct 2013 39/5.7% Chol 5.9
July 2014 45/6.3% Chol 5.5
Aug 2015 61/7.7% Chol 5.9
May 2016 84/9.7% Chol 6.9
Oct 2016 53/7%  Chol 6.3
Dec 2016 41/5.9% Chol 6.0
June 2017 51/6.8% Chol 6.1
Oct 2017 52/6.9% Chol
Metformin SR 2000mg, Candesarten Cilexetil 4mg Omeprazole 20mg, Fexofenadine 180mg Co-Codamol 30/500g when needed. Amitriptyline 20mg
Toujeo/NovoRapid, Allergic to Levemir.

Offline Pattidevans

  • Administrator
  • Posts: 23,650
  • It's ONLY Diabetes. It could be something worse!
Re: Happy New Year, but only just!
« Reply #4 on: 29 January 2017, 01:33:03 PM »
Kat

I am so sorry you and your husband had to go through all that, when the possible danger of DKA should have been mentioned to you in the first place.  Of course no one (who didn't know about Canagliflozin) would suspect DKA at a BG level of 14.8, particularly in a T2 or for that matter a T1.  The more I hear about that particular class of drugs the more dangerous it seems.  Very pleased you now have a meter which will read blood ketones.

What happened in the end when you thought you saw more blood after he was released from hospital?  I hope he's now well on the road to recovery.  Just goes to show we need to find out about the drugs we are taking for ourselves!

For the others, I had not heard of Xultophy, it transpires it's a mix of Tresiba and Liraglutide (Victoza).
Patti


Type 1.  Mis-diagnosed T2 May 2003, finally had CPeptide test 15/7/11 and proper diagnosis 1/9/11.  Now pumping Apidra with Roche Spirit Combo pump. Hba1c 6.1 April 2016.


© 2015 Patti Evans

Offline Pattidevans

  • Administrator
  • Posts: 23,650
  • It's ONLY Diabetes. It could be something worse!
Re: Happy New Year, but only just!
« Reply #5 on: 29 January 2017, 01:37:49 PM »
PS  forgot to say, you are the 2nd member of this relative small forum to have a problem with Canagliflozin.  Agincourt also had a problem when it caused him to pass out.
Patti


Type 1.  Mis-diagnosed T2 May 2003, finally had CPeptide test 15/7/11 and proper diagnosis 1/9/11.  Now pumping Apidra with Roche Spirit Combo pump. Hba1c 6.1 April 2016.


© 2015 Patti Evans

Offline sedge

  • Global Moderator
  • Posts: 13,785
Re: Happy New Year, but only just!
« Reply #6 on: 29 January 2017, 03:20:23 PM »
Well the 'less than 10%' of folk who had these probs were in the year 2013 -2014 - it's now 2017 for starters and one has to ask - how many less than 10% I wonder! - could have been 9.999r % couldn't it - and when it was still very new  on the market - in which case I daresay it's well over that by now.
Jenny

T1 DX 1972, pumping Novorapid 24/05/11

HbA1c - 7/07 8.7, 1/08 7.8, 9/08 8.4, 3/09 7.3, 7/09 7.2, 12/09 7.3, 11/10 8.1, 2/11 8.6, 9/11 6.5 2/12 6.4  5/12 50/6.7  11/12 52/6.9  01/13 46/6.4  06/16 46/6.4  12/16 45/6.4