"Sitagliptin isn't gonna work but stay on it for 4 months"

[jocat]

Good luck with getting things sorted out. I don't understand what your professionals are playing at messing you about like this. My sugars started rising last October then suddenly middle of Jan they shot up to the 30's and the meter was just saying high. I had been on metformin and gliclazide since diagnosis in 2009. I saw gp mid Jan she started me on sitagliptin. I then had to wait two weeks to see her because she was on holiday. Saw her end of Jan and sugars still in 30's lot of time so she said no more messing you are starting insulin today. I was started on mixed insulin an hour later, .My sugars came down to the 20's over next two weeks, saw my diabetes nurse ( who had done the actual starting on insulin) and I asked to go on basal bolus, I had done a lot of research and started carb counting so she said I could. I spent another hour with the nurse while she worked out all dosages for the basal insulin, as carb counting she was happy for me to adjust bolus dose. I saw her three days later to check I was doing ok, adjusted basal again, told me how to keep adjusting basal to get decent fasting readings( am still titrating my bedtime dose up every 2-3 days). My sugars are much improved, even had a few hypos, hadn't realised how ill I was feeling at high levels. Have got to have hba1c done again next week, will be interested how much figures have improved. I do not think it is at all kind or professional how the nurses and doctors are treating you, I am larger but the hcps didn't hesitate when I needed the step up to insulin.
Take care
Jo

 

[Bloden]

I'm furious for you too, Rosie.😡 Why don't situations like yours end up in the papers? People need to know how the NHS fails T2 diabetics time and time again. Grrrrrrrrr...makes my blood boil!

 

[Rosiecarmel]

Thanks for the advice everyone. I rang the Careline and they said that it was really unusual I haven't responded to any medication and leaving me for six months is appalling. They told me I have a RIGHT to be referred to a specialist and if my GP/DSN refuses I have the right to see someone else until I get referred.

He also said that being GAD negative doesn't rule out LADA which echos what you've all said. I never got round to rearranging my c peptide test after they told me they'd taken insufficient blood as I went on holiday.

I looked at NICE guidance on Dulaglutide (Trulicity) and I DO fit the criteria. I can't find anywhere where it says you have to be on a gliptin for 6 months? I may have missed it but I can't see it.

The Careline advisor said that if I get nowhere asking to be referred to a specialist to ring them back and they can support me via an advocacy service which I hope I don't need. I hope they'll just refer me!! Will be ringing the doctors Monday morning!!

 

[grovesy]

Good luck hope you get sorted!

 

[Northerner]

Good luck Rosie, hopefully you will finally get to talk to someone who knows what action to take to get your levels under control - it really has been far too long!

 

[Ljc]

Good luck Rosie, you sock it to them.
Do let us know how you get on.

 

[DaveB]

Hi. Can I ask what your BMI is? Victoza is normally given to those T2s who are overweight. I have never heard it being used as a LADA treatment? LADA's will usually be slim as they lack insulin and the body starts to burn fat. This is the opposite of typical Victoza candidates so I wonder why your nurse is going down that route. I think you definitely need to be referred. If you really are LADA and probably slim and Gliclazide doesn't work then insulin would normally be next?

 

[Rosiecarmel]

Hi, my BMI is 35. It was a lot higher but I have lost weight since diagnosis due to cutting carbs. My bmi DOES put me in overweight category but I don't really look it and I'm active (I'm a 23 y/o student nurse and I go swimming/gym regularly now)

My DSN thinks that putting me on Truclicity or Victoza will help me lose weight as she told me that going on insulin will make me gain weight. She knows that I'll end up on insulin soon but also told me she's not allowed to put me on insulin without trying another injection first. She keeps telling me we have to "jump through all the hoops"

 

[Northerner]

Hi. Can I ask what your BMI is? Victoza is normally given to those T2s who are overweight. I have never heard it being used as a LADA treatment? LADA's will usually be slim as they lack insulin and the body starts to burn fat. This is the opposite of typical Victoza candidates so I wonder why your nurse is going down that route. I think you definitely need to be referred. If you really are LADA and probably slim and Gliclazide doesn't work then insulin would normally be next?

Actually, we have a member who is LADA and put on Byetta, a similar treatment to Victoza, who also had problems with weight. I think that whilst LADAs may 'usually' be slimmer, it's just the same as saying that Type2s are 'usually' overweight, so not a very reliable indicator of type of diabetes.

 

[bilbie]

Is what my DSN just said. She said she's not allowed to put me on Truclicity or Victoza until I've been on Sitagliptin for 6 months and seen the dietician which has been rescheduled for July 22nd I think. It's all to do with money which is ridiculous. She said I need to get my Hba1c done in August then book in to see her in September to be put on an injection. She said she thinks the injection will work brilliantly for me and deep down she knows sitagliptin isn't gonna work yet as she's convinced I'm probably LADA but there's absolutely nothing she can do...

Will be ringing the Careline this afternoon to talk about this as even my DSN agrees it's ridiculous and in the mean time I'm sitting with avg. readings of 14.4. She said my Hba1c being 67 is probably down to the canagliflozin and it's such a shame that I had to come off it but it made my HS flare up

I'm just lost now and upset that im being left to deal with high readings on my own.

Gee, I wonder if you had the side effects in the leaflet and couldn't take it? I guess you may have to go onto it now.
my first choice would be to reduce the sugars and starches more, eat lots of other veg, salads and healthy fats. It's far too early to say you will be on insulin, without a proper confirmation of LADA, your symptoms could easily be insulin resistant T2.

With data from the newcastle diet, if you get the fat out of the liver and pancreas, it may go into remission/reversal
Newcastle trial aims in 8+ weeks to mimic the rate of ~70% remission, for surgery T2
http://www.ncl.ac.uk/magres/research/diabetes/

 

[Stitch147]

Good luck with it all Rosie.

 

[jocat]

My gp team never even mentioned any other form of injectable before starting me on insulin, I was reading nice guidelines the other night and it said need to try 3 therapies which I had done, metformin gliclazide and then sitagliptin the next step was insulin so I am confused by what they are saying to you or where their info is coming from. Good luck
Jo

 

[AJLang]

Rosie I am so sorry that the nurse is doing this to you. I hope that you are able to get it sorted out very soon xx

 

[Copepod]

Hi, my BMI is 35. It was a lot higher but I have lost weight since diagnosis due to cutting carbs. My bmi DOES put me in overweight category but I don't really look it and I'm active (I'm a 23 y/o student nurse and I go swimming/gym regularly now)

My DSN thinks that putting me on Truclicity or Victoza will help me lose weight as she told me that going on insulin will make me gain weight. She knows that I'll end up on insulin soon but also told me she's not allowed to put me on insulin without trying another injection first. She keeps telling me we have to "jump through all the hoops"

My guess is that the DSN is having to work within the guidelines of your local Clinical Commissioning Group, which may be stricter than NICE guidelines. Also, a point of fact, not to be rude, but BMI 35 is within "obese" category (30 to 39.9), with 25 - 29.9 overwight category. NHS explanation of BMI here http://www.nhs.uk/Conditions/Obesity/Pages/Introduction.aspx These definitions are used in NICE / CCG guidelines, so it's worth knowing the correct names for various values.

 

[Rosiecarmel]

@Copepod do you know if there's a way I can find the local CCG policies? I've had a quick Google but not much came up relating to diabetes criteria in my area.

 

[AndBreathe]

Isn't the tenet at the very heart of the Hippocratic oath, of "Do no harm" not just a bit at odds here with "jumping through the hoops".

I'm afraid I would have been very tempted to look the nurse unwaveringly in the eye and asked if she were in your shoes, would she be content "jumping through the hoops" with the blood scores you are enduring.

I can appreciate how your nurse will be trying to aid your weight loss journey by looking to delay insulin, but surely your overall health and day to day functioning will improve once your body isn't over working itself, combating these blood numbers?

I'm frustrated for you.

 

[grovesy]

Mine has it on its website under patient guides then Diabetes. Not easy to navigate.

 

[SlowRunner]

Why would you gain weight on insulin? Just curious - my weight is the most stable it's ever been since starting MDI.

 

[Northerner]

Why would you gain weight on insulin? Just curious - my weight is the most stable it's ever been since starting MDI.

You have good control and run marathons. Insulin will cause weight gain if the energy from food is not used - it will store the excess as fat. It's the reason why a lot of people lose weight prior to a Type 1 diagnosis - the body can neither use nor store energy, so it starts to eat itself 😱

I've actually lost nearly a stone since January, since I stopped drinking alcohol, so weight loss is possible with insulin, it's finding the balance. 🙂

 

[AndBreathe]

Anecdotally, some people can initially find themselves having hypos, then treating those with foods or calories they might not otherwise have consumed.

Of course, I have absolutely zero personal experience to back that up.