• Guest - w'd love to know what you think about the forum! Take the 2025 Survey »

Solution to a complex situation

T

traybroth

Newbie
Messages
3
Hi there,

I am 41 and have stage 4 incurable renal cancer which is difficult to deal with because its not my only health problem.

7 years ago I started waking up in the night sweaty, clammy, dizzy, with nausea, tingling lips and headache. It became a regular occurence. After several months I started passing out. Many occasions I would end up in hospital and discharged without a diagnosis. The last time I was admitted I was wearing an ECG monitor when I passed out which happened to capture what was going on. I would wake with the same symptoms above, my heart rate would drop to the low 20's. At that point I would pass out and my heart would pause. Due to the long pauses, the coronary care unit gave me no choice but to have a pacemaker fitted which wouldn't give me a diagnosis, but it would prevent my heart going lower than 50bpms and prevent me from passing out.

For 7 years I have lived with the pacemaker inplanted and have never passed out since it was inplanted. I still often wake up feeling clammy, dizzy, needing to wee, feeling sick and get terrible headaches. Tests ruled out sleep apnea, epilepsy etc. I suppose the focus has always been on oncology and cancer. Why I have these nocturnal episodes has never been discussed much. I attend the pacemaker clinic annually and I am told that the pacemaker is in use most nights but rarely through the day.

I have regularly tested blood sugar during the day and its usually between 4 - 6 mmol/L. Recently I signed up for a trial of the CBM freestyle libre 2 and its finally given me the answers to why I am wearing a pacemaker. I sleep an average of 7 hours per night and for around 5.5 hours of those 7, I am in a hypoglycemic catergory. The point where I wake up sweaty, dizzy etc is where my blood sugar is the lowest. If I didn't have the pacemaker inplanted then I guess I would pass out and have the heart pauses.

I have made an appointment to discuss this with my GP but its over a week away. In the meantime I have been trying to raise my blood sugar before going to sleep. I have tried sugar, protein and carbs but nothing has worked. My daytime wake hours shows an average of 4 - 4.5 mmol/L which spikes to around 6mmol/L after eating and straight back down to 4 - 4.5mmol/L within 30 minutes of the spike.

Can anyone please advise how they manage nocturnal hypoglycemia please? I would love to have a restful nights sleep.
 
Have you been able to check the Libre readings against finger pricks?
I ask because Libre are susceptible to compression lows - they record false lows when pressure is applied.
This happens most commonly at night when we may lie on the sensor.

With this in mind, I would be reluctant to assume your night time sweats are due to hypos unless you have confirmed them with finger pricks, especially as dangerous hypos in the absence blood sugar reducing drugs such as insulin are very rare.
 
Hi @traybroth and welcome to the forums. I'm so sorry you are having all these health issues.

Unfortunately I think @In Response is right, you'll need some readings from a glucometer to back up those libre readings in order to confirm the hypoglycemia and get taken seriously by an endocrinologist.

Assuming those readings are correct (and they might be false) then there are a number of medical reasons why you could be going low at night, which is why you'd need an endocrinologist. who'd know the different causes and how to test for them. I'll tag in @Lamont D and @Brunneria who both know a lot about this subject but you'll probably have to wait a while for them to be back online.

Unfortunately the different medical reasons have different treatments (eg insulinoma might require an operation to remove a benign cyst from your pancreas while the RHers control their condition by minimising the carbs in their diet). I'm not saying you have either of those conditions as I'm not a doctor, don't know much about the many causes of non medication induced hypoglycemia and don't even know for sure that you are getting hypos at night. But if hypoglycemia is the cause of your night sweats then an endocrinologist should be able to help you. Good luck. (As a T1, I have always particularly empathised with people who suffer from hypoglycemia : I hate hypos.)
 
Hello and thankyou for your reply.

Yes, I have woken up during the night feeling dreadful and done a fingerprick test and there is 0.1 difference.
 

Hello, thankyou for your reply.

I am already under an endocrinologist because I had immunotherapy which caused damage to my one remaining adrenal gland. (I lost a kidney and adrenal gland to kidney cancer a few years ago) I needed replacement cortisol for a while, until the adrenal gland recovered. Still under the endo team though. Do I raise these night time readings with my endo consultant or my GP?

I have regular chest & abdo CT scans with me having advanced kidney cancer, I have had them every 3 months for the last few years, my pancreas is clear of any metastatic spread. I had read about insulinoma but I think it would have been spotted on my regular CT scans if that was the case.

I have been able to do fingerprick test when I have woken, therefore I can see the results are fairy acurate. I have had a couple of hypoglycemia events early morning too, just after 9am when I have been awake and active. I know something is happening without me having to scan the CBM because my hands shake, I feel dizzy and weak. If I didn't have the pacemaker inserted then I think I would probably pass out.
 
How low are you going on the fingerprick test? My feeling would be to bring it up with both endo and GP, though I suspect the GP may not be much help. (But you can live in hope, some can be much more informed than others ).
 
Hi and welcome @traybroth

You have my utmost sympathy for what you are going through.
And you have my congratulations for arranging the Libre and finding this new info.
Once you have got to the bottom of it, it could majorly improve your quality of life.

I have a history of night time hypos due to a condition called Reactive Hypoglycaemia. It also results in low blood glucose events at 2.30ish in the morning, and waking feeling v rough with headaches and so on.

However, that doesn’t mean that the cause of mine is the same as the cause of yours.
In my case, my hypos go away when I stop eating carbs.
I know, it seems counter intuitive. People around here use carbs to get themselves out of a hypo, but in my case what happens is that eating carbs triggers an over production of insulin which then pushes glucose too low, resulting in a hypo.
My solution is to eat good, nutritious, unprocessed meat, fish, eggs, cheese, butter, mayo, olive oil, non-starchy veg, nuts and seeds (not grains, pasta, potato, rice, root veg, sweet fruit, sugar, or any high carb foods). Doing that keeps my blood glucose on an even keel day and night.

With your cancer and your pacemaker, your situation is very different from mine. I have not (to my knowledge) ever had my heart stop. And I’m not sure what medications you may be on? Sometimes blood glucose dysfunction can be caused by medications.

So your situation needs proper investigation.

having the evidence from the Libre should help you to leverage that, I hope!

My only suggestion is that you have a bit of a think, and consider whether your new habit of eating carbs to push blood glucose levels up is helping at all? Or could it be making things worse?
From the daytime readings you mention, it looks like your body is doing a really good job at keeping your blood glucose levels at a healthy, steady normal during the day. Something clearly happens at night to change that.
In my case, something like a sweet or fruit snack late evening, or potatoes on my evening meal would be enough to cause the night time hypo, but I think it would be unwise to make any assumptions about your situation.

Good luck with finding (and eliminating!) the cause of your hypos.
 


Hi, hope you are feeling a little better.
Yes, mention this to your endocrinologist, and see if you can get the tests, Hypoglycaemia is usually diagnosed in patients with T1, or those on blood glucose lowering drugs, I would imagine that going through the treatment, you have had medication that has probably changed your hormonal response to everything that is happening to you. There are many variants of Hypoglycaemia and nocturnal Hypoglycaemia is just one of them. What triggers the hypos is what the tests are for.

Keep safe.
 
You must log in or register to reply here.
Menu
Log in
Register
Cookies are required to use this site. You must accept them to continue using the site. Learn More.…