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HB1ac has crept up

johnpol

johnpol

Well-Known Member
Messages
919
Location
Consett
Type of diabetes
Type 1
Treatment type
Pump
well am not a happy bunny!:banghead: went for my follow up apt at the hospital on Wednesday, and my HB1ac has crept up to 70!! so I am understandably a bit peeved. But for only the second time in 23yrs since diagnosis I got a "Well Done" of my professor !!! I thought hang on, how can I get a well done for my HB1 going up?? oh he says we have downloaded your pump and meter , and we are really happy with everything you are doing, and can see that it's just a blip. *** am I meant to do!! I fell off the horse last year when I lost my Mother and have worked really hard to get my HB1 down from 118 to 58, just for it to creep up, and eating a lot better than I have done for a year, makes you want to scream!!!:banghead::banghead::banghead::banghead:.
the best bit is I have been called the hospitals guinea pig......... do you mind trying out this tablet for us?????? Hmmmmm?
so I go in as a Type 1 (the Profs words not mine) but you have Type 2 tendencies because you are Insulin resistant!! can you try Empagliflozin (Jardiance) for me ??? Technically we are going to see how you go on with it. and seeing as you can do things properly (go work that one out) we feel that you can be responsible with this medication!! got to say its one of the strangest consultations I have ever had!!! and I've had a few (was even asked out for a fight once!! ha ha)

I have been left feeling confused to say the least..
 
are you on metformin its seems odd that its risen if youve been controlling your carb intake. i wonder if its the drug effecting you.
 
I know the feeling. I was told this week by practise nurse well done my HbA1c is 64. Hells bells it’s gone up from 50, needless to say I don’t now believe a word she says!
 
paulus1 said:
are you on metformin its seems odd that its risen if youve been controlling your carb intake. i wonder if its the drug effecting you.
Click to expand...
yes am on metformin and Pioglitazone(which I'm going to stop) it's because I have type 2 resistance apparently (new one on me I have to say)
 
its on the increase type 1s getting type 2 its down to the processed food. and the claim that type 1s should eat normally. obviously your type 1 is an auto immune issue but the end result is that your bod cant deal with glucose so the more insulin you pump into yourself the more resistance. low carbing is more tricky for type1s but it reduces your insulin requirement and thus your insulin resisdence.
 
paulus1 said:
its on the increase type 1s getting type 2 its down to the processed food. and the claim that type 1s should eat normally. obviously your type 1 is an auto immune issue but the end result is that your bod cant deal with glucose so the more insulin you pump into yourself the more resistance. low carbing is more tricky for type1s but it reduces your insulin requirement and thus your insulin resisdence.
Click to expand...
I reduced my carbs and lost over eight stone a few years ago(retired from strength training at 24st) and was still requiring a lot of insulin (over 200ius a day) and was on less than 30grms of carbs a day so they put me on Metformin and Pioglitazone, cant seem to get over this resistance. as my prof said "you are a complicated case", you can say that again!!!
 
Heya @johnpol

Firstly... *hugs*. Sending much love your way. Take a breath, accept that something odd - but not life-changing - has happened and that it doesn't change anything, really. If you were feeling great and in control before this appointment, you shouldn't let it fluster you too much. Keep on eating to your meter, doing all the things you need to do, take strength and confidence from this community.

I'm a little fascinated to read that your Prof wants you on Jardiance. I take that medication (at 25mg) and wasn't aware it was licensed for T1 use in the UK yet as its specific mechanism is to allow sugar to get excreted in the urine. A little google later and it seems that, indeed, the NHS has been "experimenting" with putting T1's on the Jardiance:

https://www.diabetes.co.uk/in-depth...y-be-approved-as-a-type-1-diabetes-treatment/

The drugs own site is fairly clear on who the medication is for and why:

https://www.jardiance.com:

"JARDIANCE is not for people with type 1 diabetes or for people with diabetic ketoacidosis (increased ketones in the blood or urine)."

I'm not a doctor, just someone who weighed up the pros and cons of taking this drug before agreeing to it (after being unable to take Metformin / Sukkarto), but I would say that if your wonky HbA1c result has turned up after you started the Jardiance (a big, serious drug with a big, serious action) that could well be why and to challenge the wisdom of putting someone on a pump on this drug - particularly someone who is very careful about their diabetes management and who takes "blips" seriously.

At least get them to explain the drug's action, how that works alongside (instead of against) your current treatment plan's action, the elevated risk of DKA (and why) - and how it differs from a hypo (my guess is you're hypo aware but not DKA aware) and to explain why DKA and hypos aren't an increased risk for a T1 patient on a pump (I would think that they most definitely are). It's a very new drug, it's not yet been licensed anywhere for use on T1Ds, no wonder your Prof is "delighted" with you, frankly.

Again, all of this written under the banner that I'm not a doctor, I cannot recommend a specific medication or medical course of action, but I do think you need to seek some clarity and transparency here.

Last Thought:
DKA is really seriously dangerous and people who take Jardiance are at an increased risk (15% roughly) of having it. This is because, unusually (compared to incidents of DKA in T1s) the drug causes it to occur in people with otherwise relatively normal blood sugar readings (5-7) It develops quickly and can be hard to act upon as one of the symptoms is confusion. But it has a very specific set of symptoms which need prompt action:

Vomiting
Bad breath (keto breath - it's monstrous)
Breathing - gulping for air ("kussmaul" breathing)
Heart rate - increased pulse that will not settle
Thirst - Insatiable thirst
Confusion - unable to think or communicate coherently

I have to admit, I'm terrified of DKA, so turned that list into a little mnemonic: "Very Bad Boys Head To Cells" (and if you can remember what each letter stands for you're definitely not confused!)

http://www.pharmacytimes.com/contri...g-sglt2-inhibitors-diabetic-ketoacidosis-risk

I'm not saying it's all doom and gloom and panic stations. But I am saying it's odd that you, a T1 who admits to management stability issues within the last 12 months (sorry to hear about your mum, btw) have been given that drug. Information is power, and I think you need to seek some explanations or that HbA1c is going to become a millstone.

Good luck - let us know how it goes!

Sock x
 
Sorry for double post - just want to be thorough and clear with my info: there is a very clear distinction between DKA and ketosis (which many of us low-carbers will achieve / hope to achieve). Ketosis is when your body is burning fat super-efficiently because it's short of carbs and protein (the other two macronutrients), and they come out in your urine naturally without clogging up the kidneys and poisoning your blood. DKA is when your body produces too many ketones too quickly and is often a side-effect of trauma, not of long-term diet change.

https://www.diabetes.co.uk/blood-glucose/ketosis.html

Sorry to not have been clearer on that in my first post.
 
SockFiddler said:
Heya @johnpol

Firstly... *hugs*. Sending much love your way. Take a breath, accept that something odd - but not life-changing - has happened and that it doesn't change anything, really. If you were feeling great and in control before this appointment, you shouldn't let it fluster you too much. Keep on eating to your meter, doing all the things you need to do, take strength and confidence from this community.

I'm a little fascinated to read that your Prof wants you on Jardiance. I take that medication (at 25mg) and wasn't aware it was licensed for T1 use in the UK yet as its specific mechanism is to allow sugar to get excreted in the urine. A little google later and it seems that, indeed, the NHS has been "experimenting" with putting T1's on the Jardiance:

https://www.diabetes.co.uk/in-depth...y-be-approved-as-a-type-1-diabetes-treatment/

The drugs own site is fairly clear on who the medication is for and why:

https://www.jardiance.com:

"JARDIANCE is not for people with type 1 diabetes or for people with diabetic ketoacidosis (increased ketones in the blood or urine)."

I'm not a doctor, just someone who weighed up the pros and cons of taking this drug before agreeing to it (after being unable to take Metformin / Sukkarto), but I would say that if your wonky HbA1c result has turned up after you started the Jardiance (a big, serious drug with a big, serious action) that could well be why and to challenge the wisdom of putting someone on a pump on this drug - particularly someone who is very careful about their diabetes management and who takes "blips" seriously.

At least get them to explain the drug's action, how that works alongside (instead of against) your current treatment plan's action, the elevated risk of DKA (and why) - and how it differs from a hypo (my guess is you're hypo aware but not DKA aware) and to explain why DKA and hypos aren't an increased risk for a T1 patient on a pump (I would think that they most definitely are). It's a very new drug, it's not yet been licensed anywhere for use on T1Ds, no wonder your Prof is "delighted" with you, frankly.

Again, all of this written under the banner that I'm not a doctor, I cannot recommend a specific medication or medical course of action, but I do think you need to seek some clarity and transparency here.

Last Thought:
DKA is really seriously dangerous and people who take Jardiance are at an increased risk (15% roughly) of having it. This is because, unusually (compared to incidents of DKA in T1s) the drug causes it to occur in people with otherwise relatively normal blood sugar readings (5-7) It develops quickly and can be hard to act upon as one of the symptoms is confusion. But it has a very specific set of symptoms which need prompt action:

Vomiting
Bad breath (keto breath - it's monstrous)
Breathing - gulping for air ("kussmaul" breathing)
Heart rate - increased pulse that will not settle
Thirst - Insatiable thirst
Confusion - unable to think or communicate coherently

I have to admit, I'm terrified of DKA, so turned that list into a little mnemonic: "Very Bad Boys Head To Cells" (and if you can remember what each letter stands for you're definitely not confused!)

I'm not saying it's all doom and gloom and panic stations. But I am saying it's odd that you, a T1 who admits to management stability issues within the last 12 months (sorry to hear about your mum, btw) have been given that drug. Information is power, and I think you need to seek some explanations or that HbA1c is going to become a millstone.

Good luck - let us know how it goes!

Sock x
Click to expand...
Thanks for the Hug. I am aware of the increased risk of DKA (I know someone who was on this Drug) the prof explained in depth what to do, I have a Ketones meter which I use religiously when I am poorly, I am still undecided as to taking the drug and understand the process of it. But all other treatment options other than carrying on taking vast amounts of insulin, I have even tried the fasting and eating 800 cals (resulted in a spate of Hypos) so I am willing to try it, coupled with my Metformin dose. it seems like I am a complicated fella. and I am just disappointed that my HB1 has crept up, I thought that it would have reduced more.
 
Again, not a doctor disclaimer here, but of the "'flozins", Jardiance is the one that has seen least results with T1D trials, while the other two, particularly dapagliflozin, showed good results and a lower incidence of DKA over the short term.

You did have an HbA1c of 58 - that's surely not outrageous? (No idea what it should be for T1Ds - I'm assuming within the range that us T2s aim for?). What prompted your care team to start on this new medication when your HbA1c was so previously so good?
 
that drug sounds nasty. you say youve dropped 8 stone have you regained any of it. when you were doing your weight training did you use any non script meds,
 
SockFiddler said:
Again, not a doctor disclaimer here, but of the "'flozins", Jardiance is the one that has seen least results with T1D trials, while the other two, particularly dapagliflozin, showed good results and a lower incidence of DKA over the short term.

You did have an HbA1c of 58 - that's surely not outrageous? (No idea what it should be for T1Ds - I'm assuming within the range that us T2s aim for?). What prompted your care team to start on this new medication when your HbA1c was so previously so good?
Click to expand...
they are trying to see if the reduced glucose (through getting rid of it) can help in slightly reducing my insulin levels, then they told me to ensure that I keep taking my insulin and to leave all the settings on my pump alone. I think they are trying different approaches to my resistance, in the hope that they can get it back to reducing the levels I currently take.
 
paulus1 said:
that drug sounds nasty. you say youve dropped 8 stone have you regained any of it. when you were doing your weight training did you use any non script meds,
Click to expand...
at the beginning of my strongman days yes I did, but that's a completely different discussion, and they were taken to be able to train for longer (six days a week very,very heavy) but the last few years of it no only took lots and lots and lots of food, and protein and amino acids. in those days it was thought to be the norm.
 
It's not "nasty" as much as complicated - you have to take it mindfully and seriously and I do test ketones once a week, get my kidney function looked at regularly as well as run through the mnemonic whenever I'm feeling a bit odd and shaky. To be honest, it's hastened my weight loss and (aside from the potential DKA risk) has had very few side-effects compared to the 2 kinds of Metformin that I tried: I had 2 false hypos in my first month of it, but that could just as easily have been my sudden (and aggressive!) adoption of low carbing.

I suppose I'm most curious as to why @johnpol was given Jardiance particularly as his HbA1c was 58 (I understand the target is set as a universal 48 these days, regardless of whether T1 or T2). Clearly he had his diabetes under control (in spite of the complications described - and more power to you, John), and this seems like a kind of nonsensical change to me.

Added after reading your last reply, @johnpol :
But, again, your HbA1c wasn't bonkers, and your management - low carbing, management strategies, weight loss - was clearly effective. It's such a dramatic thing to try. Is the issue here that you're having to take 8 times as much insulin as anyone else to maintain this?

I'm wondering what someone with T1.5 would think about this (especially as that's something I don't understand AT ALL but have been trying to come to grips with).

Interesting one, John, and one I have much sympathy (and no answers) for. Hang in there, eh?

Sock x
 
johnpol said:
yes am on metformin and Pioglitazone(which I'm going to stop) it's because I have type 2 resistance apparently (new one on me I have to say)
Click to expand...

It sounds like your consultant means insulin resistance. It's not altogether uncommon in T1s, although very much more common in T2. In essence, it means our bodies don't use insulin very efficiently.

In T2s, that means we generate more and more insulin, but in T1s it can result in unusual carb ratios.

There's loads on the forum about it, and of course Dr Google has much to say.

One thing to be aware of is that the SGLT-2 drugs work by ditching some glucose out of your body in your urine, so if you're dipping that, for whatever reason, be aware.
 
DCUKMod said:
It sounds like your consultant means insulin resistance. It's not altogether uncommon in T1s, although very much more common in T2. In essence, it means our bodies don't use insulin very efficiently.

In T2s, that means we generate more and more insulin, but in T1s it can result in unusual carb ratios.

There's loads on the forum about it, and of course Dr Google has much to say.

One thing to be aware of is that the SGLT-2 drugs work by ditching some glucose out of your body in your urine, so if you're dipping that, for whatever reason, be aware.
Click to expand...
I don't dip test now, not since I got my Ketones tester, I must admit I do find it an unusual way to treat my resistance, they are carrying out another C-peptide test just to see what's happening, the last one was done a few years ago, again to see what was potentially causing the resistance, I am still unsure to take this drug or just to hold off until I go for my annual review in July, it seems I have some fun times ahead of me. but I will carry on with how I am going (testing evry two to three hours and bolusing 20mins before I eat, and keeping my carbs down to under 40grms)
 
Last edited:
johnpol said:
I don't dip test now, not since I got my Ketones tester, I must admit I do find it an unusual way to treat my resistance, they are carrying out another C-peptide test just to see what's happening, the last one was done a few years ago, again to see what was potentially causing the resistance, I am still unsure to take this drug or just to hold off until I go for my annual review in July, it seems I have some fun times ahead of me. but I will carry on with how I am going (testing evry two to three hours nad blousing before I eat, and keeping my carbs down to under 40grms)
Click to expand...

Only you can decide on the go/no-go with your meds.

Good luck with it all, whichever route you decide to take.
 
Honestly ..these flipping doctors..half of them havent a clue what they're talking about....every time I see my consultant he labels me a different type than the time before...I'm type 1 and 2 and pancreatic. .......this week my hba1c was 5.5 %....too low now ..got to raise it....im thinking of not bothering going to him anymore and just seeing g.p.....although his receptionist called me last week askinng me to come for a glucose tolerance test....whats that for i asked....to see if i have diabetes she said.....erm ive had it 10 yrs now...dont he read my notes?...I'll just manage on my own thanks .....jeez...lol
 
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