Confusion over tiredness

[faujidoc1]

I do have unexplained tiredness and have had several trials of different insulins, and to be perfectly frank I remember becoming intensely more aware of the tiredness when I became a guinea pig for human insulin at the Institute of Child Health, London in 1981. Perhaps going from ox insulin (since 1974 aged 5) to human, triggered something in my body?

There is an account of another user on the forum who experienced relief of his tiredness after switching from human to porcine insulin. However, he experienced strong resistance from his doctor, who was unwilling to prescribe 'inferior' animal insulin over the 'superior' human insulin.
A summary of current research into long term tiredness in T1 diabetics is here..
Google search ncbi, PMC2905388
(Link cannot be posted due to forum policy)
Notice that though there is a lot of speculation about varying glucose levels, etc NOBODY really knows and NOBODY is even thinking of the individual patient response to the specific type of insulin prescribed.
Yet, from the various accounts available here, including yours, the type of insulin seems to be a factor.
Every insulin is actually a uniquely different kind of molecule/drug which tends to mimic the response of your natural hormone. We standardise the preparations to a common efficacy expressed in terms of Insulin Units. But this is based on assumptions as to how the particular drug affects humans...there is place for individual variation. So a particular type of insulin may 'suit' you more than the other despite both being theoretically identical in effect. However the doctor would prefer to prescribe the insulin type which has the least possible long term side effects... So human would be preferable to porcine. Yet human insulin might be less effective in the patient due to individual variation. So even though we think we have given a better drug, its efficacy may be less leading to low energy and tiredness over the long term.
This could possibly be overcome by increasing the insulin dosage slightly over the recommended one...but that would have to be offset by also increasing the dietary intake to avoid low BS. The other option would be to switch the type of insulin... this is what many have reported in practice.
To be sure, long term tiredness is NOT an intrinsic part of being T1 as only some report it, others have no such symptoms at all, despite being diabetic for longer.
What is actually needed is a research study...we need to ask all T1s about tiredness and find the common factor.

 

[Scott-C]

I am still wrapping my mind around my daughter's diagnosis...

Understandably so. Almost thirty years in, I think my parents probably worry about it more than I do!

One thing which has made a major difference for me was starting using freestyle libre about a year ago. Instead of having to second guess with strip testing and only catching highs and lows after they happened, being able to see a graph and direction indicator whenever I want allows me to predict developing situations and catch them with a slight 5g or 1 or 2u tweak and proactively stop them happening.

Non-Ts, including a lot of old school docs, cannot truly understand the significance of that.

It's explored in depth by Stephen Ponder in his book Sugar Surfing. Some hospitals here in Scotland recommend it in connection with cgm.

It's such a radically different approach that it's allowed me to stop thinking about T as an enemy I'm constantly fighting to thinking it more as a bit of my body has gone wrong, so I need to help it out. That way, I feel more that I'm co-operating with it, helping myself, like I might help my nephew when he falls off his bike, rather than fighting a relentless enemy. I'm at peace with my T1 because if it. Libre metaphorically levels the playing field, and literally levels my blood sugars!

So, I'd encourage you to look into getting cgm. Don't know what the score is with libre in the USA at the moment is - last I looked was that it was just the patient-blinded Libre Pro version, don't know if the patient viewable version is licensed yet, but there's also Dexcom and Medtronic available in USA. They're all good.

There's a good book, Breakthrough...by Thea Cooper, which deals with the discovery of insulin but also the humanity of it all, by covering Elizabeth Hughes, the daughter of a prominent politician at the time. There's a moving letter by her shortly after she first starts getting insulin: she decides she's going to get by without her nurse and be, "the captain of my own ship." T1 is never going to be a walk in the park, but I found reading that book makes me appreciate how (relatively) easy things are now compared to the early days.

Google Eva Saxl too for some inspiration: fled to Shanghai in the war to escape the Nazis only to find insulin supplies were cut of by the invading Japanese. Found a paper on insulin production, ended up making her own in a make shift lab from water buffalo pancreases! Saved hundreds of others too. Hero. I can never complain about my lot when someone in those circumstances is capable of that.

Best of luck!

And remember...

PS: there's a lot of good stuff on the ncbi site you mentioned. You should be able to post links now. I think it's just restricted for the first 3 or 5 posts for newbies to avoid spamming.

 

[Scott-C]

so rock on Scott-C in the great outdoors!

Got lazier as I grew older! Latterly, my relationship with the great outdoors became popping my tent up in the Red Squirrel campsite, then adjourning to the bar at the Clachaig Inn!

And when the beer garden has this view, why not?

 

[becca59]

Got lazier as I grew older! Latterly, my relationship with the great outdoors became popping my tent up in the Red Squirrel campsite, then adjourning to the bar at the Clachaig Inn!

And when the beer garden has this view, why not?

View attachment 23393

Fab!

 

[librarising]

Got lazier as I grew older! Latterly, my relationship with the great outdoors became popping my tent up in the Red Squirrel campsite, then adjourning to the bar at the Clachaig Inn!

And when the beer garden has this view, why not?

View attachment 23393

** envy **
Geoff

 

[librarising]

Understandably so. Almost thirty years in, I think my parents probably worry about it more than I do!

One thing which has made a major difference for me was starting using freestyle libre about a year ago. Instead of having to second guess with strip testing and only catching highs and lows after they happened, being able to see a graph and direction indicator whenever I want allows me to predict developing situations and catch them with a slight 5g or 1 or 2u tweak and proactively stop them happening.

Non-Ts, including a lot of old school docs, cannot truly understand the significance of that.

It's explored in depth by Stephen Ponder in his book Sugar Surfing. Some hospitals here in Scotland recommend it in connection with cgm.

It's such a radically different approach that it's allowed me to stop thinking about T as an enemy I'm constantly fighting to thinking it more as a bit of my body has gone wrong, so I need to help it out. That way, I feel more that I'm co-operating with it, helping myself, like I might help my nephew when he falls off his bike, rather than fighting a relentless enemy. I'm at peace with my T1 because if it. Libre metaphorically levels the playing field, and literally levels my blood sugars!

So, I'd encourage you to look into getting cgm. Don't know what the score is with libre in the USA at the moment is - last I looked was that it was just the patient-blinded Libre Pro version, don't know if the patient viewable version is licensed yet, but there's also Dexcom and Medtronic available in USA. They're all good.

There's a good book, Breakthrough...by Thea Cooper, which deals with the discovery of insulin but also the humanity of it all, by covering Elizabeth Hughes, the daughter of a prominent politician at the time. There's a moving letter by her shortly after she first starts getting insulin: she decides she's going to get by without her nurse and be, "the captain of my own ship." T1 is never going to be a walk in the park, but I found reading that book makes me appreciate how (relatively) easy things are now compared to the early days.

Google Eva Saxl too for some inspiration: fled to Shanghai in the war to escape the Nazis only to find insulin supplies were cut of by the invading Japanese. Found a paper on insulin production, ended up making her own in a make shift lab from water buffalo pancreases! Saved hundreds of others too. Hero. I can never complain about my lot when someone in those circumstances is capable of that.

Best of luck!

And remember...

View attachment 23392

PS: there's a lot of good stuff on the ncbi site you mentioned. You should be able to post links now. I think it's just restricted for the first 3 or 5 posts for newbies to avoid spamming.

Love the cartoon !
Geoff

 

[faujidoc1]

One thing which has made a major difference for me was starting using freestyle libre about a year ago. Instead of having to second guess with strip testing and only catching highs and lows after they happened, being able to see a graph and direction indicator whenever I want allows me to predict developing situations and catch them with a slight 5g or 1 or 2u tweak and proactively stop them happening.

Non-Ts, including a lot of old school docs, cannot truly understand the significance of that.

It's such a radically different approach that it's allowed me to stop thinking about T as an enemy I'm constantly fighting to thinking it more as a bit of my body has gone wrong, so I need to help it out. That way, I feel more that I'm co-operating with it, helping myself, like I might help my nephew when he falls off his bike, rather than fighting a relentless enemy. I'm at peace with my T1 because if it. Libre metaphorically levels the playing field, and literally levels my blood sugars!.

Thank you for understanding Scott-C!
You are totally correct about the Libre... when I read about it on this forum and saw the videos I was blown away!
Like, why isn't everyone using this already?
I suppose it takes time to change entrenched views.... and then there is the issue of availability and (marginally higher) costs.
Even T2 diabetics will probably never be able to understand just why the T1 needs to know his BS every 15 min....but I guess, when you've got the fuel injector under manual control, you've got to know your engine RPM exactly, lest you stall or flood it with fuel precipitously!
The only thing better would be an automated unit wirelessly picking up current BS from a Libre like receptor and calculating and delivering the insulin through pump automatically....but maybe in a few years, that will become reality!
Anyone here volunteering to pass on the idea to Elon Musk/ Tim cook/ Bill Gates?

 

[Scott-C]

Anyone here volunteering to pass on the idea to Elon Musk/ Tim cook/ Bill Gates?

Whoah, I wouldn't wire myself up to anything Windows based!

That sort of thing is already here. The major companies are doing it, and a lot of enterprising hackers have built their own, including our very own mod tim2000s who is a mine of information on the subject. Here's his blog:
http://www.diabettech.com/looping-a-guide/

 

[faujidoc1]

What an amazing read that page is @Scott-C!
I guess the future is already here!

 

[faujidoc1]

What an amazing read that page is @Scott-C!
It's amazing, the kind of things human beings are capable of, isn't it?!
That gave me a lot of hope....
It's kind of like where Cochlear implants were at 25 years ago (I'm an ENT surgeon)... the first few were totally experimental, fly by the seat of your pants kind of stuff. Today, it's routine, no big deal, with the big players competing to lower the price and better the features..
I look forward to the day when a parent will be told 'Your child has T1, no big deal... just get this device fitted in Room 101... Check in again after a year!'.
And old timers like us can moan about how much the youngsters get mollycoddled! "Now, in our days we did it all manually, none of this automated new fangled stuff....! "

 

[Scott-C]

That gave me a lot of hope....

One of the most interesting things at the moment is "smart" or glucose responsive insulin.

https://jdrf.org.uk/our-research/about-our-research/treat/smart-insulin/

Without a doubt the most tedious aspect of T1 is trying to steer levels within a certain range - no-one likes hypos and hypers - , but, and I suppose it's a big but, if smart insulin works the idea is that you just fire in some insulin and it'll automatically switch on and off in response to glucose levels: no more carb counting, no more hypos etc. etc. Or at least that's the theory...whether it works in practice, we'll just have to wait and see. If it does, that would be a pretty good stop-gap on the way to a cure.

I went on a bit of a retro nostalgia trip recently and bought some Glucoflex-R testing strips similar to the ones I last used more than 25 years ago: big drop of blood, wait 30 seconds, wipe off, wait another 30 seconds and compare the colour to a chart on the vial! So, I'm sitting there with a libre sensor on, with an Ambrosia blucon nightrider on top of that transmitting results via bluetooth to my phone every five minutes, to two decimal places, but I was getting more excited waiting to see if I was going to get a nice light blue/light tan on the glucoflex strip for a nice 5!

What it'll all be like in 5 or 10 years time, I don't know, but these are interesting times for us.

 

[christine18]

Hi Everyone,

A little confused by differing opinions on tiredness for type 1s. I am very tired a lot. I have no underlying conditions and no deficiencies and sleep and eat fine. My sugars are largely under control aside from the odd blip or really hot weather like we have just had. My DSN has said that its just part of the condition which is totally ok but.....when on this forum, people tend to say that we shouldnt be tired just because of diabetes so I am a bit confused.

Do any of you suffer this tiredness with no other explanations? Ive read up on it and fatigue has been attributed to type 1 even when well managed so not sure why thats not more commonly said in other threads.

 

[christine18]

Hi Everyone,

A little confused by differing opinions on tiredness for type 1s. I am very tired a lot. I have no underlying conditions and no deficiencies and sleep and eat fine. My sugars are largely under control aside from the odd blip or really hot weather like we have just had. My DSN has said that its just part of the condition which is totally ok but.....when on this forum, people tend to say that we shouldnt be tired just because of diabetes so I am a bit confused.

Do any of you suffer this tiredness with no other explanations? Ive read up on it and fatigue has been attributed to type 1 even when well managed so not sure why thats not more commonly said in other threads.

I have been T1 for 25years. I have never had massive energy levels! I have always kept fit, ate well and my HBACs have always been well in control!! I have been told that diabetes is a strain on the body and that is why the extra tiredness is felt! I always put my energy levels down to T1... Hope that makes you feel a bit more normal..... Everyone is different so don't let other people experience make you feel bad. We are all individuals X

 

[ickihun]

I get HB bloods done once a year, the last being in February 2017, it was 13.6, which is normal for a female. For most of my adult life I've included vitamins and nutrition in my diet to avoid defficiencies, I get my potassium, iron etc.., I exercise daily (less strenuously than I did in my 20s and 30s when I used to climb and cycle a lot), I've toned it down because of work demands/time. Thankfully I don't have any nutrition defficiencies. Yet I sometimes feel as though I'm low on something or just pulling myself through, which is demoralising but not the end of the world.

I became aware of 'odd' tiredness at around age 6 (I was diagnosed T1 at age 5), I remember going to bed at night feeling tired and waking up tired but still active like most kids. That's when blood defficiency tests started, to rule out anaemia/cancer/low calcium etc...Always shown normal which is why I harp on about accepting my tiredness as a part of living. I 'cope' with it and live actively (as a gesture towards diabetes) but some days are worse than others and I can become a Moaner Lisa about it. Yesterday was on those bad days, like yesterday. By 8 p.m I was practically singing the blues about the meaning of life.

I regularly insist on follow up tests, especially for anaemia, and if refused due to cutbacks I'll pay for a test. Nothing to prove a reason for concern.

It's fantastic that your iron tablets have made such a difference to your breathing and tiredness. I take several supplements as a precaution, including 60 mg iron daily, but my tiredness is just there, it's more like a drained feeling. It's an enigma, a complete mystery - but life goes on, does it not!

Could you be overdosing on a vitamin, somewhere? Just a thought. Some eat too many brazil nuts and that can be enough to cause a problem.

 

[rosedreams]

Got lazier as I grew older! Latterly, my relationship with the great outdoors became popping my tent up in the Red Squirrel campsite, then adjourning to the bar at the Clachaig Inn!

And when the beer garden has this view, why not?

View attachment 23393

I like it!

 

[Lynz84]

I have been T1 for 25years. I have never had massive energy levels! I have always kept fit, ate well and my HBACs have always been well in control!! I have been told that diabetes is a strain on the body and that is why the extra tiredness is felt! I always put my energy levels down to T1... Hope that makes you feel a bit more normal..... Everyone is different so don't let other people experience make you feel bad. We are all individuals X

Thanks so much christine18! Also lovely to hear from someone whos had it that long and still healthy

 

[rosedreams]

Could you be overdosing on a vitamin, somewhere? Just a thought. Some eat too many brazil nuts and that can be enough to cause a problem.

The vitamins I take, the dosage, are based on blood count readings. I try not to guess if I'm overdosing and I get bloods done twice year, the second batch of tests paid for privately as I'm allowed one set of full blood tests.

 

[ickihun]

The vitamins I take, the dosage, are based on blood count readings. I try not to guess if I'm overdosing and I get bloods done twice year, the second batch of tests paid for privately as I'm allowed one set of full blood tests.

I sympathise. I have huge tiredness too. Mostly from medical conditions and meds to keep me alive which cause tiredness.
I'd love my youthful energy back.
I get told I'm getting older, not surprised with all your meds and you do have a few medical conditions.
I'm shattered, even now typing this, I need to go back to bed.
Its my own fault , I should have had my afternoon nap earlier but mr ickihun wanted supervising in the garden. He cannot do anything on his own anymore, since his breakdown. I had it so I would watch out for him out of kitchen window but he was nervous today so he needed me.
No energy at all.
Food is just a necessity for me now. I'm trying to prepare my stomach for an operation which could reduce some tablets.

 

[rosedreams]

.

 

[rosedreams]

I sympathise. I have huge tiredness too. Mostly from medical conditions and meds to keep me alive which cause tiredness.
I'd love my youthful energy back.
I get told I'm getting older, not surprised with all your meds and you do have a few medical conditions.
I'm shattered, even now typing this, I need to go back to bed.
Its my own fault , I should have had my afternoon nap earlier but mr ickihun wanted supervising in the garden. He cannot do anything on his own anymore, since his breakdown. I had it so I would watch out for him out of kitchen window but he was nervous today so he needed me.
No energy at all.
Food is just a necessity for me now. I'm trying to prepare my stomach for an operation which could reduce some tablets.

My heart goes out to you, truly. It's tough feeling run down, and your meds are a kind of obligation in your life that sometimes makes you yearn for that lost feeling of vim and vigour, like you said. I hope you can somehow find ways to keep your morale up, it's not easy, but my thoughts are with you.