Feeling despondent, not sure what to do.

[BarbaraG]

OK, potted history. T2 over 25 years, on metformin most of that time, other drugs off and on (depending on the state of my diet and weight, basically - I have issues with binge and compulsive eating, I am never going to be thin). Have been happily on Trulicity for 5 years. Last year HbA1C was 56, and I started on a statin (reluctantly) because my QRisk had nudged from just under 10% to just over 10%. This year my HbA1C was 71!!

The nurse prescribed empagliflozin, which I was (and still am) very reluctant to take. Instead, I intensified my healthier eating (which I had only just started when I saw her) to low carb and upped the exercise. Got some Libre Freestyle sensors, and after a few days, stopped taking the statin.

That original A1C of 71, according to the calculator on this site, is roughly equivalent to an average BG of 11. After a few days with the sensor I was seeing an average BG of 9.5 and predicted A1C of 59. Over the next few weeks, as I low carbed and exercised, they came steadily down, so by the end of January we were looking at average BG of 7.5. It was saying predicted A1C of 52, but that’s taking in the whole of my data, if you just went from the average BG it would be something like 46, so I was well happy.

But then disaster struck as I was unable to get my prescription for Trulicity filled. The last dose I had was on 31st January. And my BG has been steadily rising - my 7 day average has just hit 9.6 :-( which would roughly translate to A1C of 59 again. This despite low carbing, exercising virtually daily (both strength and cardio) and having lost 11lb already.

The half life of Trulicity in the body is 5 days, so by now there should only be about 10% of the usual post-injection dose in my body. So you would think that it can’t get much worse…… It just feels that after weeks of effort, I am back to where I started. I know I’m not quite, because my BG’s are not (yet) as high as they were in the 3 months leading up to that HbA1C being taken. And that was with Trulicity, whereas now I am without. And once the Trulicity is out of my body, the ongoing low carb/exercise/weight loss SHOULD start to bring BG’s down again. I guess my question - to myself, really - is how long do I give it?

Maybe I should take the empagliflozin - perhaps a a temporary measure, while I get over the hump, as it were. I’d really rather not, though. Frequency of urine from high BG is bad enough, I don’t fancy having to pee ALL the time.

The other thing is - my weight loss has slowed to a crawl the last couple of weeks. Trulicity is associated with weight loss - I did lose weight when I started on it. So it’s not surprising that stopping it has stalled me. Hopefully that too is temporary.

The only change I think I could possible make would be to go lower carb, verging into keto. But I honestly don’t think I can sustain that long term, it’s just too limiting. I’m enjoying my food at the moment, and it’s stickable with, for me. I don’t want to start yo-yoing again.

looking at it calmly - I think it makes sense to wait until I’ve been off Trulicity a full month, before deciding anything. By then, surely, I should start to see the trend reversing. If it doesn’t…. then maybe I will have to take the empagliflozin after all. Or maybe I’ll nip down to the pharmacy and ask them to give me the paper prescription for the Trulicity, and ring round other pharmacies, see if I can get it elsewhere.

 

[mouseee]

There's a thread somewhere on here about an oral med which is similar and can be prescribed for T2s who can't get Trulicity. Definitely worth contacting your DN about.

 

[Rachox]

Hi @BarbaraG , yes as @mouseee says there is a statement from Diabetes U.K. which refers to a National Patient Safety Alert suggesting the use of oral Semaglutide is substituted for GLP- R injections. I was on Victoza which has now become unobtainable too. My GP allowed me to have these tablets. Here’s the links to both articles:

Our response to serious supply issues of drugs for people with type 2 diabetes

UPDATE, 3rd January 2024: A new National Patient Safety Alert has been issued by NHS England and the Department for Health and Social Care to address supply issues with GLP-1 RA medication. This will open up new prescribing of Rybelsus (semaglutide) tablets to people living with type 2 diabetes...

www.diabetes.org.uk

https://www.cas.mhra.gov.uk/ViewandAcknowledgment/ViewAttachment.aspx?Attachment_id=104161

 

[BarbaraG]

I thought Rybelsus was only available to people who had been on an injectable semaglutide, whereas Trulicity is dulaglutide - related, but not identical. Still, worth asking the question!

 

[Rachox]

I thought Rybelsus was only available to people who had been on an injectable semaglutide, whereas Trulicity is dulaglutide - related, but not identical. Still, worth asking the question!

I was on an injectable called Victoza which is Liraglutide, so definitely worth asking.

 

[Resurgam]

@BarbaraG would it help to consider just what eating low carb would mean?
I found medication for type 2 made me very unwell, so eating low carb is the best option for me. It works really well, and with meals such as chops, steak, fish, to look forward to, and a bit of home baking once in a while, I really can't complain at all.

 

[BarbaraG]

@BarbaraG would it help to consider just what eating low carb would mean?
I found medication for type 2 made me very unwell, so eating low carb is the best option for me. It works really well, and with meals such as chops, steak, fish, to look forward to, and a bit of home baking once in a while, I really can't complain at all.

I AM eating low carb, just not very low carb (keto). I’m not eating major starches (bread, pasta, rice, potatoes, cakes, biscuits etc), or anything with added sugar as a rule. No fruit juices, smoothies or soft drinks. With fruits, I’m limiting it to lower sugar ones, such as berries and pears. I’m eating loads of vegetables and salads, plus meat, fish, eggs, nuts, seeds, cheese, olives, yogurt, with liberal use of olive oil and vinegar. Milk in tea and coffee.

Going even lower carb would probably mean cutting out fruit altogether and giving up milk and yogurt. I honestly don’t think I would be able to sick to that.

 

[mouseee]

You're right, it has to be sustainable. Things like Greek yogurt and full fat milk might reduce the carbs slightly.

 

[lovinglife]

It’s worth pointing out that sometimes no matter how low carb someone with T2 eats they may still need medication, there is no shame in needing any medication, we are all different and manage our diabetes differently, it has to be what works long term for you, not anyone else

 

[Rachox]

I agree with the two commentators above, whatever you choose it must be sustainable. I’ve always taken some medication so I don’t have to alter my diet further than I already have. It’s at a level now where I have good control whilst enjoying my food.

 

[Paul_]

You're right, it has to be sustainable. Things like Greek yogurt and full fat milk might reduce the carbs slightly.

@BarbaraG - I've never ended up trying them, so can't comment on taste, but when I was researching suitable dairy options for my low carb diet then a number of reduced lactose products were lower carb than their regular versions. I seem to remember Lactofree Whole Milk was around half the carbs of regular whole milk, so if it's something you consume in quantity it could be worth a look.

 

[BarbaraG]

You're right, it has to be sustainable. Things like Greek yogurt and full fat milk might reduce the carbs slightly.

Yep, that’s what I use.

 

[BarbaraG]

It’s worth pointing out that sometimes no matter how low carb someone with T2 eats they may still need medication, there is no shame in needing any medication, we are all different and manage our diabetes differently, it has to be what works long term for you, not anyone else

I was perfectly happy on metformin and Trulicity. I was well on the way to controlling my BG on those, after getting off that pigging statin, without adding empagliflozin - but then Trulicity became unavailable.

If I have to replace Trulicity with empagliflozin, then I guess I do. I just started to believe maybe I could do better.

 

[HSSS]

I was perfectly happy on metformin and Trulicity. I was well on the way to controlling my BG on those, after getting off that pigging statin, without adding empagliflozin - but then Trulicity became unavailable.

If I have to replace Trulicity with empagliflozin, then I guess I do. I just started to believe maybe I could do better.

Depending on just how low carb your diet is it’s worth bringing your attention and that of your prescribing nurse to the small but real risk of euglycemic dka with the sglt2 medications and low carb/keto diets. The usual advice is not to prescribe those medications for those on the lower end of low carb as a result.

 

[VashtiB]

If I have to replace Trulicity with empagliflozin, then I guess I do. I just started to believe maybe I could do better.

Please do not feel that replacing the medication with another is a failure in any way. There is actually no 'right way' to deal with being a type 2. What is the best for one person is not the best for another. Whatever way you deal with it needs to be sustainable on both a physical and emotional basis. There is no shame in taking medication. What would be a shame is if you didn't take the necessary steps to manage your levels and ended up with more severe consequences. That would be sad.

Taking care of yourself physically and mentally is important- finding a way ahead that is sustainable is important.

Good luck

 

[AndBreathe]

OK, potted history. T2 over 25 years, on metformin most of that time, other drugs off and on (depending on the state of my diet and weight, basically - I have issues with binge and compulsive eating, I am never going to be thin). Have been happily on Trulicity for 5 years. Last year HbA1C was 56, and I started on a statin (reluctantly) because my QRisk had nudged from just under 10% to just over 10%. This year my HbA1C was 71!!

The nurse prescribed empagliflozin, which I was (and still am) very reluctant to take. Instead, I intensified my healthier eating (which I had only just started when I saw her) to low carb and upped the exercise. Got some Libre Freestyle sensors, and after a few days, stopped taking the statin.

That original A1C of 71, according to the calculator on this site, is roughly equivalent to an average BG of 11. After a few days with the sensor I was seeing an average BG of 9.5 and predicted A1C of 59. Over the next few weeks, as I low carbed and exercised, they came steadily down, so by the end of January we were looking at average BG of 7.5. It was saying predicted A1C of 52, but that’s taking in the whole of my data, if you just went from the average BG it would be something like 46, so I was well happy.

But then disaster struck as I was unable to get my prescription for Trulicity filled. The last dose I had was on 31st January. And my BG has been steadily rising - my 7 day average has just hit 9.6 :-( which would roughly translate to A1C of 59 again. This despite low carbing, exercising virtually daily (both strength and cardio) and having lost 11lb already.

The half life of Trulicity in the body is 5 days, so by now there should only be about 10% of the usual post-injection dose in my body. So you would think that it can’t get much worse…… It just feels that after weeks of effort, I am back to where I started. I know I’m not quite, because my BG’s are not (yet) as high as they were in the 3 months leading up to that HbA1C being taken. And that was with Trulicity, whereas now I am without. And once the Trulicity is out of my body, the ongoing low carb/exercise/weight loss SHOULD start to bring BG’s down again. I guess my question - to myself, really - is how long do I give it?

Maybe I should take the empagliflozin - perhaps a a temporary measure, while I get over the hump, as it were. I’d really rather not, though. Frequency of urine from high BG is bad enough, I don’t fancy having to pee ALL the time.

The other thing is - my weight loss has slowed to a crawl the last couple of weeks. Trulicity is associated with weight loss - I did lose weight when I started on it. So it’s not surprising that stopping it has stalled me. Hopefully that too is temporary.

The only change I think I could possible make would be to go lower carb, verging into keto. But I honestly don’t think I can sustain that long term, it’s just too limiting. I’m enjoying my food at the moment, and it’s stickable with, for me. I don’t want to start yo-yoing again.

looking at it calmly - I think it makes sense to wait until I’ve been off Trulicity a full month, before deciding anything. By then, surely, I should start to see the trend reversing. If it doesn’t…. then maybe I will have to take the empagliflozin after all. Or maybe I’ll nip down to the pharmacy and ask them to give me the paper prescription for the Trulicity, and ring round other pharmacies, see if I can get it elsewhere.

Barbara, should you decide to ask for a paper script for you Trulicity to see if you can get it elsewhere, it is my understanding your pharmacy can only do that if either it was the only item on the prescription, or if there was more than one item, NOTHING on the script has been dispensed. If you "fail" that, then your GP needs to provide the paper script.

It could be worthwhile ringing round the local pharmacies to see if anyone either has it or can get it before going down the route of getting the paperwork in your hand?

 

[jjraak]

looking at it calmly - I think it makes sense to wait until I’ve been off Trulicity a full month, before deciding anything. By then, surely, I should start to see the trend reversing

Hi @BarbaraG

I think in fairness to @Resurgam post, I rather agreed with the point.

We all risk assess in our own way, sometimes it's a worry about a med or about it's impact on our lives.

I saw the post as suggesting an overview of the benefits of being able to come off the meds & just what it would take...if that was possible

And re-reading your post, it seems to read as if that's what you yourself are hoping for ?

Any medication must have an impact & even once we stop taking it, leaves some residual effect in our bodies for a while.

That settling of the body post trulicity, where perhaps the washing out of a medication 'could' clear the view, and show that low carbing 'MIGHT' offer a workable solution...is how I read it .

Not as a criticism.

No medication, is definitely not Guaranteed,
but perhaps the secret desire that all of us wish for.

As for taking meds, of course it's the best way if that's what works & is needed for people to manage an illness or condition.

No shame in that at all.
Not on insulin or such like here.

But I do have asthma, and my sprays are a very effective treatment for it...
so I happily take those meds for that very reason...they work ...for me.

Good luck getting your script filled elsewhere or finding your body actually does settle down to a point that the way you're currently eating does actually offers an improvement alone.

 

[BarbaraG]

Hi @BarbaraG

I think in fairness to @Resurgam post, I rather agreed with the point.

We all risk assess in our own way, sometimes it's a worry about a med or about it's impact on our lives.

I saw the post as suggesting an overview of the benefits of being able to come off the meds & just what it would take...if that was possible

And re-reading your post, it seems to read as if that's what you yourself are hoping for ?

Any medication must have an impact & even once we stop taking it, leaves some residual effect in our bodies for a while.

That settling of the body post trulicity, where perhaps the washing out of a medication 'could' clear the view, and show that low carbing 'MIGHT' offer a workable solution...is how I read it .

Not as a criticism.

No medication, is definitely not Guaranteed,
but perhaps the secret desire that all of us wish for.

As for taking meds, of course it's the best way if that's what works & is needed for people to manage an illness or condition.

No shame in that at all.
Not on insulin or such like here.

But I do have asthma, and my sprays are a very effective treatment for it...
so I happily take those meds for that very reason...they work ...for me.

Good luck getting your script filled elsewhere or finding your body actually does settle down to a point that the way you're currently eating does actually offers an improvement alone.

What I originally wanted was to avoid having to add a third medication. My HbA1C had gone from 56 (not great) to 71 (terrible) in a year - and the only material change was the addition of the statin. I hadn’t changed diet, exercise, or weight over that time.

So stopping the statin could reverse that, I thought - at least partially. But having said that, the 56 A1C was not brilliant - so diet and exercise, plus coming off the statin, should get me to an acceptable A1C, was my thinking. That was assuming I continued with metformin and Trulicity. And all the signs are I was right - my BG had come down to a level which, if sustained, would have seen my A1C in the 40’s. So there would have been no need to add the third medication.

But now the second medication isn’t available, so the job has been made that much harder. The nurse told me that in her experience Trulicity only works well for people for 3-4 years - well the evidence of what’s happened after withdrawing it shows it was still working very well for me! Empagliflozin is a different mechanism of action, though - and I really don’t like the implications of it. I was offered this (or similar) as another option when I started the Trulicity. I chose to inject myself weekly rather than take a tablet, because I did not want to live with having to pee every 5 minutes (exaggeration for effect!) for the rest of my life, or the risk of constant thrush infections. I still don’t want that.

But now I have the bit between my teeth on low carb and exercise. I am really enjoying the way my body feels thanks to working out, I have a spring in my step. So - you know - just wondering whether, in time, they will get my BG down enough, and how quickly that might happen. My BMI now is still over 39, so as you can see there is plenty to go at. Was 41.5 at the start of the year, 48 when I was diagnosed.

I clearly had very high BG’s for several months before my latest A1C was taken….. they are actually lower now than they were then. I think I can afford to wait a few weeks and see if the tide turns.

It took 3 weeks to reduce my average BG by 2 whole points. I don’t expect the decrease from weight loss alone (with stable diet and exercise levels) to be as fast. But I won’t be able to see how fast it is until the Trulicity is out of my system, and that’s another 10 days or so.

 

[jjraak]

Great attitude @BarbaraG

I'd say you're right to wait.
All power to you.

I have heard statins can raise BG levels.

But heard others say they are on them, and doing ok.

Horses for courses.
seems we're damned if we do
&
damned if we don't sometimes.

fingers crossed the next few weeks shows positive improvements.

 

[BarbaraG]

A quick hopeful update…. average glucose (as measured by Libre Freestyle over past 7 days) has not risen any more since Saturday. OK - hasn’t gone down….. but also hasn’t gone up. Previously it had gone up every single day for the past 10 days. So maybe, maybe, it has found its peak and will eventually start declining.

It’s also become evident that my weight loss, which was proceeding steadily, has also slowed to a glacial crawl, since much the same time point, i.e. when I should have had a dose of Trulicity but didn’t. Since stopping Trulicity commonly results in some weight (re)gain, even holding steady is good!

I’ve also noted the comment from HSSS about the risk of DKA with flozins and low carb diet. I’m not keto…. I don’t generally log my food, but on days when I have totted up, it’s in the range of 50-100g carb most days. Still, another reason not to take the stuff if I can avoid it.