Non diabetic hypoglycemia. Much worse

[Jenny1610]

Diagnosed with reactive hypoglycemia in 2015 after Grand mal seizure due to low blood sugar. MMT (mixed meal test) confirmed. 3 day fast ruled out insuloma.

I live in the UK. Female aged 66. I was diagnosed with metastatic breast cancer in 2019 and I'm now on 3 weekly continuous chemo.

Last year I had a relapse (liver and lungs) and changed chemo. The protocol is to have steroids before the iv chemo. I started having severe hypos or seizures within 15 to 20 mins of finishing the reatment. I've no hypoawareness until I drop below 3.4. By that time my BG is dropping very quickly.
The libre freestyle and switch to glucogel instead of glucose tablets has helped me avoid seizures.
So far I've refused medication due to the known side effects... notably diarrhoea..
In a short space of time I've learnt some key points on this forum. Namely how to get more accurate readings and focusing on low carb, rather than low sugar food content.
I'm being referred to another hospital for 2nd opinion as I believe a hormone profile test would be a good place to start in assessing why my condition has got so suddenly worse.
I'd appreciate any thoughts or advice on my situation

 

[JoKalsbeek]

Diagnosed with reactive hypoglycemia in 2015 after Grand mal seizure due to low blood sugar. MMT (mixed meal test) confirmed. 3 day fast ruled out insuloma.

I live in the UK. Female aged 66. I was diagnosed with metastatic breast cancer in 2019 and I'm now on 3 weekly continuous chemo.

Last year I had a relapse (liver and lungs) and changed chemo. The protocol is to have steroids before the iv chemo. I started having severe hypos or seizures within 15 to 20 mins of finishing the reatment. I've no hypoawareness until I drop below 3.4. By that time my BG is dropping very quickly.
The libre freestyle and switch to glucogel instead of glucose tablets has helped me avoid seizures.
So far I've refused medication due to the known side effects... notably diarrhoea..
In a short space of time I've learnt some key points on this forum. Namely how to get more accurate readings and focusing on low carb, rather than low sugar food content.
I'm being referred to another hospital for 2nd opinion as I believe a hormone profile test would be a good place to start in assessing why my condition has got so suddenly worse.
I'd appreciate any thoughts or advice on my situation

Just a guess here, but I think the steroids drive up your blood glucose, and your pancreas overreacts with its insulin output, just like it would with a spike from a carby meal... Not a whole lot you can do about it, I'm afraid, but keep the CGM handy and try to head off hypo's when they come. Normally I'd not advise glucogel or anything for RH, just a low carb diet to even out the spikes and dips, but.... The steroids can't be helped, you need those. So what you're doing now seems pretty much spot-on.

I hope you'll be back to your old self quickly; cancer free. And able to treat your RH with your newly acquired knowledge.
Hugs,
Jo

 

[Jenny1610]

Thank you so much for your response. Yes the steroids are a blessing and a nuisance. My oncologist gives me the lowest dose possible.
Steroids aside I seem not to be able to maintain steady Bg no matter what I eat. The BG goes into fiee fall after every meal. To what extent depends on physical exertion and/or the weather. I feel safe indoors but not out.
Maybe one day I can go back to dextrose tablets. I do hope so.

 

[JoKalsbeek]

Thank you so much for your response. Yes the steroids are a blessing and a nuisance. My oncologist gives me the lowest dose possible.
Steroids aside I seem not to be able to maintain steady Bg no matter what I eat. The BG goes into fiee fall after every meal. To what extent depends on physical exertion and/or the weather. I feel safe indoors but not out.
Maybe one day I can go back to dextrose tablets. I do hope so.

Steroids work on for a very, very long time... They can keep your bloods going nuts for ages after you've stopped using them, so that might account for not being able to make sense of the highs and lows right now. There's a wildcard at work.

Once the steroids and their side effects are done with, assuming you will come off them eventually, a low carb diet would even out your spikes and dips. When there are no spikes, the dips don't happen either. A glucose tablet would cause a spike and result in a dip again, so you'd be back in a vicious cycle. The whole goal'd be not to even need tablets anymore, (though I'd keep 'em handy for emergencies of course) no Somogy Effect-esque responses, nothing, just.... A nice equilibrium without hypo's, seizures and whatnot.

Weather affects one's insulin-sensitivity, so when it's warm you're more likely to go hypo because you're more insulin-sensitive, and exertion'll burn off more glucose, which could make your liver dump glucose, which then triggers another overshoot of insulin, potentially... So I can imagine why you only feel safe in a controlled environment. For the moment, tackle the cancer, focus on that. When all that's sorted and the steroids and treatments are over, maybe try a keto diet or something, (which could be high in protein, which also would help with the cancer-recovery) to try and get a more even line, preventing hypers and hypo's. But that's just what I'd try... Because I am a stubborn know-it-all and I prefer sorting things on my own. What you could/should do, however, is get your oncologist or GP to refer you back to an endo who treats RH, because the oncology treatments are complicating and exacerbating a condition that is their area.

Mind you, I'm a T2, not an RH. https://josekalsbeek.blogspot.com/2019/11/the-nutritional-thingy.htmlthis might help get your diet sorted, but don't take anything I say as gospel: you have a complicated set of things going on that all affect one another, and I'm just a faceless amateur on a forum. If you can, get more help. Wrangle in the pro's.

Hugs,
Jo

 

[Lamont D]

Diagnosed with reactive hypoglycemia in 2015 after Grand mal seizure due to low blood sugar. MMT (mixed meal test) confirmed. 3 day fast ruled out insuloma.

I live in the UK. Female aged 66. I was diagnosed with metastatic breast cancer in 2019 and I'm now on 3 weekly continuous chemo.

Last year I had a relapse (liver and lungs) and changed chemo. The protocol is to have steroids before the iv chemo. I started having severe hypos or seizures within 15 to 20 mins of finishing the reatment. I've no hypoawareness until I drop below 3.4. By that time my BG is dropping very quickly.
The libre freestyle and switch to glucogel instead of glucose tablets has helped me avoid seizures.
So far I've refused medication due to the known side effects... notably diarrhoea..
In a short space of time I've learnt some key points on this forum. Namely how to get more accurate readings and focusing on low carb, rather than low sugar food content.
I'm being referred to another hospital for 2nd opinion as I believe a hormone profile test would be a good place to start in assessing why my condition has got so suddenly worse.
I'd appreciate any thoughts or advice on my situation

Hi and welcome to our forum.
I have RH and have had the same diagnostic tests you have.
My endocrinologist was a life saver and with having a curious mindset. I have for the majority of those more than a decade worth of experience and being in control, through dietary control.
I have not the awful conditions you have mentioned but I have other issues myself.
I found that I helped the other conditions through dietary control.
You have RH. Which my endocrinologist termed as a carb intolerance and it is easier to say that than getting into the science when trying to understand RH.
The intolerance means from normal levels, you spike abnormally high. You counter with excess insulin response. You hypo!
As has been said already, that there is many factors that the need for being in normal levels continually is difficult if you are on steroids or getting the usual NHS advice that is so wrong.
A glucometer, a CGM and a food diary will help you realise that certain food is not good for you.
The goal is not to have hypos
I have had lactose intolerance since young. My doctor back then advised against eating dairy.
So why should give different advice if it's carbs?

I would suggest reading the RH forum and threads.

Keep asking and I do hope the treatment for your other health problems are going well.

Again welcome to the forum.

 

[Melgar]

I don't have RH, but I do have spells where my sugar goes very low at night. I have had them in the low 2's. A continuous glucose monitor or cgm would help you. I am hypo aware and I will wake up, but I still find cgms very useful. I self fund mine, but they are pricey. Because of your health issues is there any chance you could get a cgm on prescription? I haven't lived in the UK for a few decades so the NHS might be different to the Canadian health system. If you are not aware when your sugars drop maybe your medical team can make a case for getting them on the NHS. Especially given your circumstances. I know here in Canada, if you are unaware of low blood sugars an endocrinologist can write a case for no cost cgms . Just a thought.

 

[AndBreathe]

Thank you so much for your response. Yes the steroids are a blessing and a nuisance. My oncologist gives me the lowest dose possible.
Steroids aside I seem not to be able to maintain steady Bg no matter what I eat. The BG goes into fiee fall after every meal. To what extent depends on physical exertion and/or the weather. I feel safe indoors but not out.
Maybe one day I can go back to dextrose tablets. I do hope so.

If your bloods are plmetting every meal, what are you actually eating? I know the steroids are in the mix, and likely major players, but I wonder if there is any room for manoeuvre on the eating from to soften the drops