No control over blood glucose - hormones out of control?

[Jasmin2000]

Hi all, here's a conundrum that has flummoxed my GP and DSN.

Two years ago my A1c was 7.2 despite a low carb (30 g) diet and regular exercise. Once I got a CGM I could see exactly what was going on - I was getting BG spikes that plateaued at 10-12 for 3-4 hours several times a day, that were not due to carb intake. My DSN/ says it's likely due to counter-regulatory hormone responses (CRR) (epinephrine, glucagon, cortisol, somatotropin) - but responses to what he couldn't say.

In the last few months the plateaus have become way more frequent and higher, and I use fast-acting to try and push the BGs down. But the double whammy is that these CRR responses are incredibly insulin resistant. I used to inject about 10 units fast-acting throughout the day for my carbs, but now I'm injecting 20 units over each of the 3-4 hour plateaus just to keep the BG at 6-8. Increasing basal from 12 to 20 makes no difference to the plateuas and brings a danger of hypos once the hormones have subsided.

The only way I've been able to keep BGs down is to inject a large bolus of fast-acting and burn ca. 1000-2000 kcal on an excercise bike or a long walk/jog - but sometimes even this has no effect on my BG, which I don't understand as it should exhaust my glycogen reserves easily - where's the glucose coming from?

Anyways, would be grateful for any suggestions, questions or insights. Thanks folks.

 

[Hopeful34]

Sounds like you need to see an endocrinologist to get tests done that only they can order, and advise you on the results. Have you had your cortisol checked at all?

Also, how about asking for a pump?

 

[Jasmin2000]

Sounds like you need to see an endocrinologist to get tests done that only they can order, and advise you on the results. Have you had your cortisol checked at all?

Also, how about asking for a pump?

Good points @Hopeful34 - my GP said, "it's a pity we can't monitor your cortisol" and my endo didn't suggest it either - not sure why but maybe they assume cortisol is high and there's nothing you can do about it - is there? Not seen any meds, only whale music and early to bed.

I thought about a pump too, as I'm more or less pumping manually at the moment, but the need is not regular so I'd end up topping up on fast-acting or going hypo. A closed loop system would be better but I don't qualify (yet!).

 

[Hopeful34]

Good points @Hopeful34 - my GP said, "it's a pity we can't monitor your cortisol" and my endo didn't suggest it either - not sure why but maybe they assume cortisol is high and there's nothing you can do about it - is there? Not seen any meds, only whale music and early to bed.

I thought about a pump too, as I'm more or less pumping manually at the moment, but the need is not regular so I'd end up topping up on fast-acting or going hypo. A closed loop system would be better but I don't qualify (yet!).

If it's too high cortisol (I'm not a Dr and am not saying it is too high) it depends on why it's too high as to the treatment given. Sometimes medication can be used, so you really need the specialist tests.
I'd say what you're having to do, would give you a good reason to push for a hcl pump. Things you could write in a letter to your endo if you want to could include - Despite doing absolutely everything you can, it's impossible to control your diabetes on injections. If it's affecting your mental health, constantly having to give extra injections, increased risk of very low hypo's etc include this. Inability to get a good night's sleep etc etc.

 

[Jasmin2000]

If it's too high cortisol (I'm not a Dr and am not saying it is too high) it depends on why it's too high as to the treatment given. Sometimes medication can be used, so you really need the specialist tests.
I'd say what you're having to do, would give you a good reason to push for a hcl pump. Things you could write in a letter to your endo if you want to could include - Despite doing absolutely everything you can, it's impossible to control your diabetes on injections. If it's affecting your mental health, constantly having to give extra injections, increased risk of very low hypo's etc include this. Inability to get a good night's sleep etc etc.

Yes, those are good suggestions, thanks - especially the mental health and sleep issues. Need to read up on HCL systems to see what to be wary of - I'm sure it's not just plug and play.

 

[AndBreathe]

Good points @Hopeful34 - my GP said, "it's a pity we can't monitor your cortisol" and my endo didn't suggest it either - not sure why but maybe they assume cortisol is high and there's nothing you can do about it - is there? Not seen any meds, only whale music and early to bed.

I thought about a pump too, as I'm more or less pumping manually at the moment, but the need is not regular so I'd end up topping up on fast-acting or going hypo. A closed loop system would be better but I don't qualify (yet!).

Whilst it is tricky to control cortisol, it is possible to understand your position a bit better.

The cheapo, preferred test used is a 24 hr urine collection, whereas a saliva test, collected at specific times over a 24 hour period can be helpful. It is sometimes used for those with thyroid issues, impacting other hormones. You might have to press for it.

Cortisol is a circadian hormone, so varies during the 24 hour cycle. The urine collection test gives an average, in a similar way to the A1c does for blood sugar. Pretty useless really.

 

[Miss Piggywig]

My cortisol level is tested as a day curve. I go in to the day unit and have bloods taken ever hour for 8 hours. I have Addisons Disease so do not produce cortisol. My brother's was done as spit tests. Seems a sensible thing to get checked.

 

[Jasmin2000]

Whilst it is tricky to control cortisol, it is possible to understand your position a bit better.
The cheapo, preferred test used is a 24 hr urine collection, whereas a saliva test, collected at specific times over a 24 hour period can be helpful. It is sometimes used for those with thyroid issues, impacting other hormones. You might have to press for it.
Cortisol is a circadian hormone, so varies during the 24 hour cycle. The urine collection test gives an average, in a similar way to the A1c does for blood sugar. Pretty useless really.

Even the cheapo tests from Amazon are £60-80 for a single test so there's no way I can afford to do this for tracking - I need to know if there's variation throughout the day that corresponds to the BG mountains.

My cortisol level is tested as a day curve. I go in to the day unit and have bloods taken ever hour for 8 hours. I have Addisons Disease so do not produce cortisol. My brother's was done as spit tests. Seems a sensible thing to get checked.

This sounds like a good plan - every hour for 8 hours would be perfect, but I don't have a medical need like Addison's, Cushing's syndrome, so I'm not sure the NHS will shell out. Usually they won't bother if there's no standard therapy to meet the testing at the end.

 

[Hopeful34]

This sounds like a good plan - every hour for 8 hours would be perfect, but I don't have a medical need like Addison's, Cushing's syndrome, so I'm not sure the NHS will shell out. Usually they won't bother if there's no standard therapy to meet the testing at the end.

Have you had things like Addison's and Cushings ruled out then? If not, push for any tests that could help you get a reason for your symptoms/or rule out causes. No point in getting a pump to help regulate blood sugar, if there's something else going on.

 

[AndBreathe]

Even the cheapo tests from Amazon are £60-80 for a single test so there's no way I can afford to do this for tracking - I need to know if there's variation throughout the day that corresponds to the BG mountains.


This sounds like a good plan - every hour for 8 hours would be perfect, but I don't have a medical need like Addison's, Cushing's syndrome, so I'm not sure the NHS will shell out. Usually they won't bother if there's no standard therapy to meet the testing at the end.

A salivary test should really be run by an Endo as, in my personal experience, GPs have, at best, a limited understanding of individual hormones.

Don’t waste your money on Amazon. I doubt any such result would be given much respect.