Type 1 diabetic of 33 years and trulicity - I’m not sure I should be taking it?

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PurpleSky

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Type 1
Hi everyone,

Long story short :

Can any t1s on trulicity tell me its OK? Did it help them?
I am a type 1 diabetic who is overweight. They want to put me on trulicity and I am worried because
  1. I cant see how it can help me (I eat fairly healthily and rarely snack other than for a hypo when i go a bit mad! so I don’t need my apetite curbed)
  2. everything I’ve read seems to say not suitable for t1s which i raised with my dsn who to be fair, did some research and says it is completely safe, but I’m worried about hypos!

Long story (if anybody is interested)
I’m new to these forums, but not new to diabetes having had it for 33 years.

I am type 1, quite tall but have been a fairly healthy weight for most of my life. 8 years ago i became hypothyroidism as well, which is a known factor to weight gain (as is injecting insulin, an old diabetes dr told me)

Since the hypothyroidism, I’ve slowly put on weight which I guess is to be expected. I now weigh much more than I’d like to admit online!
Especially in the last year, when a follow up blood test last March was cancelled (due to all the COVID stuff) and they only just retested to find my thyroid is very low now.

Anyway, my only care these days since moving counties is under my gp, so i present to a new nurse as a middle aged fat diabetic. It was acknowledged i was t1, but basically most people where i live are t2 and my area has a very bad reputation for treating diabetics, ive been warned of this several times by different medical professionals when being treated for an unconnected disease 2 years ago.

So because I am overweight, they have put me on trulicity (prescription is sent already to chemist)

But everything I’ve read screams type 2 and not a good idea for type 1.
I am very overweight, but i am personally putting it down to me being not on the correct thyroxin dose for at least 18 months. I eat very healthily (apart from Friday night family pizza night), i am vegetarian and cook all my own meals.
I carbohydrate count, have a good hba1c and aside from hypos which occur at some point every day my control is good.

Please has any other t1s taken this medication? Did it help? Was it worth it?
 
PurpleSky said:
Hi everyone,

Long story short :

Can any t1s on trulicity tell me its OK? Did it help them?
I am a type 1 diabetic who is overweight. They want to put me on trulicity and I am worried because
  1. I cant see how it can help me (I eat fairly healthily and rarely snack other than for a hypo when i go a bit mad! so I don’t need my apetite curbed)
  2. everything I’ve read seems to say not suitable for t1s which i raised with my dsn who to be fair, did some research and says it is completely safe, but I’m worried about hypos!

Long story (if anybody is interested)
I’m new to these forums, but not new to diabetes having had it for 33 years.

I am type 1, quite tall but have been a fairly healthy weight for most of my life. 8 years ago i became hypothyroidism as well, which is a known factor to weight gain (as is injecting insulin, an old diabetes dr told me)

Since the hypothyroidism, I’ve slowly put on weight which I guess is to be expected. I now weigh much more than I’d like to admit online!
Especially in the last year, when a follow up blood test last March was cancelled (due to all the COVID stuff) and they only just retested to find my thyroid is very low now.

Anyway, my only care these days since moving counties is under my gp, so i present to a new nurse as a middle aged fat diabetic. It was acknowledged i was t1, but basically most people where i live are t2 and my area has a very bad reputation for treating diabetics, ive been warned of this several times by different medical professionals when being treated for an unconnected disease 2 years ago.

So because I am overweight, they have put me on trulicity (prescription is sent already to chemist)

But everything I’ve read screams type 2 and not a good idea for type 1.
I am very overweight, but i am personally putting it down to me being not on the correct thyroxin dose for at least 18 months. I eat very healthily (apart from Friday night family pizza night), i am vegetarian and cook all my own meals.
I carbohydrate count, have a good hba1c and aside from hypos which occur at some point every day my control is good.

Please has any other t1s taken this medication? Did it help? Was it worth it?
Click to expand...
Hi PurpleSky and welcome to the forum. I don’t have any personal knowledge of Trulicity, but I didn’t want your post to go unanswered. I had a quick look on line, and I must say, it seems it would be very unusual, unless your health team still thinks you are producing some of your own insulin.(which sounds unlikely if you have been Type 1 for so long). There is a clinical trial going on which is trying to find out if it is any use for type 1s who are producing some insulin, but it hasn’t reported its findings yet,

ClinicalTrials.gov

clinicaltrials.gov clinicaltrials.gov
Interestingly, I looked up the patient Information Leaflet, which says words to the effect of, if you’re type 1, don’t take it before you’ve consulted your medical team, as it may not be suitable for you' which seems a bit wishy-washy and not at all clear cut.
I'd ask your team what makes them think you might be producing any of your own insulin, as a starting point, and see how they react.
 
I’d suggest it’s most likely not being prescribed because they think it will make your body produce insulin but for the appetite suppressant effects. I know you say you don’t need to reduce your appetite, but if you aren’t able to lose the weight with your current diet, that you gained during the thyroid issues, that would suggest that your current diet includes more calories than your body would need to lose weight, so feeing fuller and slowing digestion may help you to reduce your portion sizes.
 
Thyroid issues can make weight loss difficult, I'm sure a few of us relate to that but the good news is even though it's slowed down, it's not impossible. What is your current level of activity?

Another thing that can help with weight loss is intermittent fasting. It can seem a bit scary at first but there is evidence that is helps with chronic conditions, inflammation and with your metabolism which is the reason your thyroid effects weight. Basically your body adjusts over time to eating fewer calories so it can be hard to keep reducing that, however IF research shows that the metabolism can be sort of 'reset' if you like.

Its not for everybody and needs to be done carefully with T1 and even though yiu asked for advice regarding the drug and not weight loss I suggest it as an alternative because it seems from the wording in your post that you don't really want to take this new drug.
 
Hi. Normally a T1 gaining weight would most likely but not always be due to having too many carbs to match that person's metabolism but in your case you have other conditions that can affect that. Insulin itself doesn't cause weight gain but it enables the body to metabolise carbs effectively. I assume you may already be doing this but keeping the carbs right down in your diet is important as part of the solution. I can't really comment on Trulicity and T1 but I gather it's unusual but may be fine if used under medical supervision.
 
I understand your concern - especially as you believe your weight gain is connected with the wrong dose of thyroxin. If you’re not happy about this prescription, maybe you could delay it for, say, 3 months to see if other approaches work.
 
Thank you all for your replies. @Inka you are correct that my concern is about the fact that the wrong dose of thyroxin was only discovered last week, so even with my new dose I will not know if it is enough until my follow up blood test which will be in two months!

My other concern for this drug is how to treat a hypo as after all it decreases appetite by slowing the stomach emptying which makes me worry i would be able to manage my bolus or even hypo treatments in a timely manner.

As for eating, I’ve been logging everything i eat for a couple of months, and I generally consume between 900 and 1500 calories per day. I don’t strictly follow low carb as I like to be awkward and I am also a vegetarian who hates avocado and mushrooms so that limits my choices, but I do try to eat lower carb whenever possible!

Im beginning to think waiting might be the correct course of action, i might call my DSN up again and run it past.
 
PurpleSky said:
Thank you all for your replies. @Inka you are correct that my concern is about the fact that the wrong dose of thyroxin was only discovered last week, so even with my new dose I will not know if it is enough until my follow up blood test which will be in two months!
Click to expand...
It takes at least 6 weeks before you will notice a difference in your levels. Having an underactive thyroid will make you gain weight as your metabolism is slowed down.

So in theory once the new dosage has taken effect you should be able to shift the weight gained.
I like many others who take thyroxin due to an underactive thyroid do not have weight issues as am on the correct dosage 🙂

It's the same with people claiming insulin makes them gain weight! Err nope it's not the insulin, it's due to people using to much and thus going hypo which means more food which = weight gain.
So it's down to correct management and minimising hypo's. 🙂
 
For treating hypos it’s best to have liquid fast acting carbs that start to absorb through the mouth rather than taking solid carbs that need to be digested, as digestion is slower.
 
Lucyr said:
For treating hypos it’s best to have liquid fast acting carbs that start to absorb through the mouth rather than taking solid carbs that need to be digested, as digestion is slower.
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As advised by my DSN, I take GlucoTabs to treat hypos, always and find they work fast enough.
They are far more convenient for carrying with me (especially when travelling) and deciding how much fast acting glucose to take than anything liquid.
I am happy for you that you have found something that works for you but i would not agree that liquid is best.
 
helli said:
As advised by my DSN, I take GlucoTabs to treat hypos, always and find they work fast enough.
They are far more convenient for carrying with me (especially when travelling) and deciding how much fast acting glucose to take than anything liquid.
I am happy for you that you have found something that works for you but i would not agree that liquid is best.
Click to expand...
If you’re not taking a drug that slows your digestion, then you've probably got different experience and advice than those taking things like trulicity and ozempic that slow digestion.
 
To be fair, Glucose tablets start working directly through the mouth/tongue whilst being chewed and don't need digesting as they are not sugar, but pure glucose.
 
Lucyr said:
For treating hypos it’s best to have liquid fast acting carbs that start to absorb through the mouth rather than taking solid carbs that need to be digested, as digestion is slower.
Click to expand...
It's still carbs and calories though which does not help if you have a weight issue hence the suggestion to sort out the number of hypos 🙂
 
Pumper_Sue said:
It's still carbs and calories though which does not help if you have a weight issue hence the suggestion to sort out the number of hypos 🙂
Click to expand...
I was replying specifically to the point below on worrying that you would not be able to treat hypos whilst on this drug. You can, but liquids work fastest due to the delayed digestion.

“My other concern for this drug is how to treat a hypo as after all it decreases appetite by slowing the stomach emptying which makes me worry i would be able to manage my bolus or even hypo treatments in a timely manner.”
 
Lucyr said:
I was replying specifically to the point below on worrying that you would not be able to treat hypos whilst on this drug. You can, but liquids work fastest due to the delayed digestion.

“My other concern for this drug is how to treat a hypo as after all it decreases appetite by slowing the stomach emptying which makes me worry i would be able to manage my bolus or even hypo treatments in a timely manner.”
Click to expand...
Ah ok. 🙂
If it were me I wouldn't touch with a barge pole but then I'm not you 🙂
 
Hope the new dose of thyroid medication sorts out those levels @PurpleSky and begins to help your weight loss efforts.

In the meantime, perhaps we can help you with the daily hypos. Those must be quite worrying and frustrating. And of course hypos tend to lead to rebounds and can out a lot of wobbliness in your BG numbers leaving you chasing your tail.

Do you have a log of your BGs so you can look for patterns and see if you can work out the reason(s) behind them?
 
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