Non Diabetic - How low should I worry about? Scared of not waking up

[HarleyRH]

Okay, this won’t be simple to explain but I need help so I will try.

I am a 27 year old female with Ehlers-Danlos Syndrome and gastroparesis. I don’t have much oral intake, less than 500 cals a day. I have a nasal-jejunal feeding tube.

I have for a long time experienced dizzyness, lightheadedness, feeling very spaced, been unable to wake up and have been trying to get to the bottom of this and have discovered I have almost constant low blood sugars, rarely getting to high 4s and frequently being low 3s. The lowest I’ve caufht with a BG monitor is 2.2 (I had one reading 0.9 and a few “lo” but I assume they were errors).

I’ve had a short synachten test and don’t have addisons.

I as well as have constant lows also have reactive Hypoglycemia: within 10 minutes of finishing a glucose drip; I had a sugar of 3.9 on a hospital monitor (initially spiked to 11.7).

I’m at my wits end and now have a Freestyle Libre: which shows me hitting 2.5 in my sleep. I have Kids and am scared of not waking up and all of my health professionals that deal with me are getting all mixed up so I’m not getting any closer to seeing an endocrinologist anytime soon.

So my question is, at what point should I be seriously worried? Am I being ridiculous worrying over readings in the 2s?

I’m so tired and exhausted, I’ve been under 4 almost all of today and can’t think straight.

Thanks

 

[Freema]

Okay, this won’t be simple to explain but I need help so I will try.

I am a 27 year old female with Ehlers-Danlos Syndrome and gastroparesis. I don’t have much oral intake, less than 500 cals a day. I have a nasal-jejunal feeding tube.

I have for a long time experienced dizzyness, lightheadedness, feeling very spaced, been unable to wake up and have been trying to get to the bottom of this and have discovered I have almost constant low blood sugars, rarely getting to high 4s and frequently being low 3s. The lowest I’ve caufht with a BG monitor is 2.2 (I had one reading 0.9 and a few “lo” but I assume they were errors).

I’ve had a short synachten test and don’t have addisons.

I as well as have constant lows also have reactive Hypoglycemia: within 10 minutes of finishing a glucose drip; I had a sugar of 3.9 on a hospital monitor (initially spiked to 11.7).

I’m at my wits end and now have a Freestyle Libre: which shows me hitting 2.5 in my sleep. I have Kids and am scared of not waking up and all of my health professionals that deal with me are getting all mixed up so I’m not getting any closer to seeing an endocrinologist anytime soon.

So my question is, at what point should I be seriously worried? Am I being ridiculous worrying over readings in the 2s?

I’m so tired and exhausted, I’ve been under 4 almost all of today and can’t think straight.

Thanks

When you are not diabetic and not taking insuline there is not that great risk to keep going lower into a fatal spiral , But I personally would discuss This with my doctor if I was in your shoes ... anything under 4 mmol is a very fine time to have some carb to keep blood glucose in the most Healthy range between 4.5 and 5.5 mmol or a bit higher when eating 8 mmol or there around, good luck to you on getting more foods inboard you dizziness can very easily come just from eating too litttle

A short spiking of 11 mmol is not really that bad after eating glucose ....! In your situation I Think you need the doctors guidance as you are in a very special situation and condition

Maybe also try eating a more slow release carb type after getting the initial glucose in your body High fibre bread cashew nuts or other type you can manage

 

[HarleyRH]

I can’t eat carbs, I’ll just throw them up, glucose makes me go even lower and I’ve discussed it with my doctor and it’s recognised to the point I am prescribed strips.

Today my sugar has been under 4 for most of the day, 3.2 for half of if.

I need to find some way of keeping it up without food, . I just don’t know what to do. I’m also waking up in sweats and a panic and drinking the glucose drinks doesn’t even bring it to above 4. I’m taking in as much feed as I can and this is the best feed I’ve tried.

 

[Freema]

I can’t eat carbs, I’ll just throw them up, glucose makes me go even lower and I’ve discussed it with my doctor and it’s recognised to the point I am prescribed strips.

Today my sugar has been under 4 for most of the day, 3.2 for half of if.

I need to find some way of keeping it up without food, . I just don’t know what to do. I’m also waking up in sweats and a panic and drinking the glucose drinks doesn’t even bring it to above 4. I’m taking in as much feed as I can and this is the best feed I’ve tried.

Well sometimes there is not really an obvious solution dear ... proteins can also be converted into blood glucose by your liver So How about drinking some protein powder Then
500 calories in a day is too little to keep up blood glucose for a grown-up person 1000 Calories would be the lowest to survive on in a longer perspective But also in an anorexic level
Glucose is also carbs

 

[Freema]

I can’t eat carbs, I’ll just throw them up, glucose makes me go even lower and I’ve discussed it with my doctor and it’s recognised to the point I am prescribed strips.

Today my sugar has been under 4 for most of the day, 3.2 for half of if.

I need to find some way of keeping it up without food, . I just don’t know what to do. I’m also waking up in sweats and a panic and drinking the glucose drinks doesn’t even bring it to above 4. I’m taking in as much feed as I can and this is the best feed I’ve tried.

I am so sad for you to have such a difficult condition to fight with , so send you a virtual hug sorry I can’t help you

 

[Freema]

I can’t eat carbs, I’ll just throw them up, glucose makes me go even lower and I’ve discussed it with my doctor and it’s recognised to the point I am prescribed strips.

Today my sugar has been under 4 for most of the day, 3.2 for half of if.

I need to find some way of keeping it up without food, . I just don’t know what to do. I’m also waking up in sweats and a panic and drinking the glucose drinks doesn’t even bring it to above 4. I’m taking in as much feed as I can and this is the best feed I’ve tried.

Can you eat macadamia nuts ? They are very easily digested and have some good calories to give you strength and they taste very fine

 

[rmz80]

Your circumstances and your issues look like specialist advice is needed fast! This Ehlers-Danlos Syndrome sounds very specialist however. I’m just wondering if you may be able to get hold of a consultant using one of the medical video link services via a mobile phone such as “Push Doctor”

 

[HarleyRH]

The medical link fhing is a good idea! All of the EDS specialists seem to be in London (I’m in Glasgow)

I can’t eat any nuts

 

[HarleyRH]

Freema, I’m tube fed, the 500kcals is just oral intake. I get the rest through my tube and it works out to about 1500kcals a day (totally fine for my BMR)

X

 

[HarleyRH]

Freema, I’m tube fed, the 500kcals is just oral intake. I get the rest through my tube and it works out to about 1500kcals a day (totally fine for my BMR)

X

 

[Deleted Account]

now have a Freestyle Libre: which shows me hitting 2.5 in my sleep.

I have read about some people getting low readings at night when they lie on their Libre. It's something to do with inaccurate readings when you apply pressure to the sensor.
Have you woken and taken finger prick readings at night to confirm you really go this low?

 

[Pinkorchid]

So sorry you are having these problems but it really is out of our realm to say what you should do. Advice we may give to other people with diabetes could be totally wrong for you with your medical condition. I think you really should discuss it with your medical team and stress to them just how worried you are. Hope they can help you

 

[Lamont D]

Okay, this won’t be simple to explain but I need help so I will try.

I am a 27 year old female with Ehlers-Danlos Syndrome and gastroparesis. I don’t have much oral intake, less than 500 cals a day. I have a nasal-jejunal feeding tube.

I have for a long time experienced dizzyness, lightheadedness, feeling very spaced, been unable to wake up and have been trying to get to the bottom of this and have discovered I have almost constant low blood sugars, rarely getting to high 4s and frequently being low 3s. The lowest I’ve caufht with a BG monitor is 2.2 (I had one reading 0.9 and a few “lo” but I assume they were errors).

I’ve had a short synachten test and don’t have addisons.

I as well as have constant lows also have reactive Hypoglycemia: within 10 minutes of finishing a glucose drip; I had a sugar of 3.9 on a hospital monitor (initially spiked to 11.7).

I’m at my wits end and now have a Freestyle Libre: which shows me hitting 2.5 in my sleep. I have Kids and am scared of not waking up and all of my health professionals that deal with me are getting all mixed up so I’m not getting any closer to seeing an endocrinologist anytime soon.

So my question is, at what point should I be seriously worried? Am I being ridiculous worrying over readings in the 2s?

I’m so tired and exhausted, I’ve been under 4 almost all of today and can’t think straight.

Thanks

Hi @HarleyRH
I cannot help you too much because I don't have the knowledge about how the other conditions that you have cause or have side effects to what happens with your reactive hypoglycaemia.
I do have RH, and usually recommend that diet alone would help treating the hypers and hypos. As you have already eliminated most carbs already.
It seems your body has a form of glucose dumping, sudden drops not long after digesting.

You are similar to me that I feel better not eating or eating very little.
Do you feel better if you fast? I know I do.

I would go along with getting specialist care from an endocrinologist who has experience of all your conditions such as yours.
I believe that a specialist endocrinologist would also give you certain tests that other doctors wouldn't or couldn't organise for diagnosis.

We do have our own forum, for those who have RH. This has a lot of good advice about controlling the condition. You might find something that you are eating that others don't! Do you have food allergies or you are intolerant to, my intolerance includes, potatoes, wheat, dairy (lactose) practically anything ending in ose!
I have come across a few people describing an intolerance to fruit, which gives a similar symptomatic effects of RH and glucose dumping.

Insist on finding a specialist, your GP should have a list of specialists like mine, who has experience in Hypoglycaemia and diabetes related endocrine conditions.

Let us know how you get on.

Best wishes.

 

[Lamont D]

Sorry,
Having RH and a glucose drip just doesn't make sense to me.
The last thing you need when having RH, is more glucose.
This would trigger the excess insulin that is created to cope with the excess glucose.
Why do you have a glucose drip?
Is it to feed you?

I would imagine that this is why there is a conflict between your doctor's.

I have been told that I should never have glucose or a glucagon jab if I go too low.
Fortunately I am not aware that I've done that.

Just a thought. Since my battle started some fifteen or so years ago, I have been told numerous times by every dietician, dsn, GP and specialist that I need a certain amount of carbs/glucose to live.
Well, do you know what?
I don't.
I use a ketogenic diet and intermittent fasting to get my health on track.
I would still be in a state if I had listened to these experts.
They said to me that a ketogenic lifestyle would be bad for me.
It has solved all my health problems. I don't have hypos no more. My body is happier and healthier on the balance of foods I have.

Maybe you need some thinking outside the box about your conditions and get some really good lifestyle advice in how to cope with what is happening to you.

Best wishes

 

[HarleyRH]

I don’t have a glucose drip, I was on one in hospital as they suspected I had addisons and that’s why I was dropping.

I cannot change what I eat as it’s pretty much all feed from a bag that I cannot alter, tube fed in to my small intestine as I cannot digest properly due to gastroparesis.

So my GI said it was reactive and did mention dumping from my intestine but I also drop if I haven’t had anything so I’m basically just chronically hypoglycemic. For the past 3 days my glucose levels have been under 3.9 75% of the time. Right now it is 3.7 and has been under 4 for the past 3 hours, I have no way to bring it up and that frightens me.

When I could eat I was keto for other health reasons (not weight) so it saddens me that I can’t go back to it as I know it’s brilliant. Currently I’m only feeding at night as I know fasting during the day is the most helpful for energy for me but I do still stay low even when fasting.

Yes I have tested with traditional monitors and know that my glucose does fall in to low 2s at least every 2 days.

Thank you everyone for your advice, I’ll wait on the endo appointment, just completely exhausted right now.

 

[slip]

Just to clarify:

You have RH.

You only feed via a feeding tube, using a pre-prepared food bag? prepared by you or 'bought in' and if so whats in them? And that's set up to feed you over night?

Generally during the day you are mild hypo or low 4s? and at night you have been dipping lower - confirmed libre readings at night with a blood test at the time on at least more than 2 occasions?

Are you able to drink liquids normally or via the tube?

 

[HarleyRH]

Yes I only feed via a feeding tube and I’m prescribed feed, I’ve managed to get quite a good one made up of MCT and other nutrients. My feed is peptide based due to my inability to digest whole nutrition properly.

I was told that my hypoglycaemia is reactive by my GI, I have not had any tests for reactive hypoglycaemia though.

I’m fasted during the day and I’ve had readings of below 3 during the day too and between more than one make of monitor, I guess my sugars are semi stable, just not in the right place. The lowest reading I have had during the day was 0.9 but I assumed it was an error as when I retested it just said “lo”? That was on an accucheck mobile. I didn’t test the other night when it was in the 2s as I was asleep, I didn’t wake up until it was a bit higher (it does go up on its own too, just not by very much)

Yes I can drink liquids

At what point does low sugar absolutely need to be corrected? At what point would you visit hospital if you couldn’t bring it up on your own?

Thanks x

 

[slip]

How stable is your weight?

I was thinking your feed might not be up for the job/suitable for someone with RH - causing the reactive lows at night and not enough to keep you stable during the day, IDK but is there such a thing as a keto version of feed packets?

As for last question, if your body is working fine your liver would dump glucose if your blood glucose got too low, so long as it has enough stored glucose in the first place. With you I couldn't really say.

 

[Lamont D]

Hi again,
I think @slip has a pertinent point in saying that your feed could be creating the lows overnight.
It must be awful not being able to eat, and only drinking fluids, and I'm trying to think of something that will raise your blood levels a touch without creating and causing more problems in a liquid form.
What do you drink or is it just water?
Surely something could be watery enough to just give you a small lift Instead of being so low?
If your blood levels are stable in the high threes and low fours, do your symptoms ease or get worse the longer you fast?
If I had a lo reading on my glucometer I would retest with new lancet, and take appropriate action. But what you have to do this, I'm not sure. I have always had a black tea and a couple of biscuits just to nudge my bloods up. Then have a low carb meal fifteen minutes after. But you can't do that! Something equivalent would be better!
What have you been told to do if you go that low?

Best wishes

 

[lindijanice]

Hey HarleyRH, welcome to the Forum. I am so sorry to hear about your dilemma especially when you have kids which must increase your anxiety, which doesn't help I'm sure....Have you experimented at all with splitting your tube feed, say early evening and then finishing overnight, or late evening? Do you know the carb count for your feeds? I'm just wondering if you are getting too much overnight, like a glucose dump and then your RH kicks in....which complicates things....

Would the company that makes up your feeds be an avenue to explore for some explanation if they are aware of your complete medical situation? Maybe they could tweak your feeds a bit more like with maybe a little higher fat content?

I would really be pushing my Dr to explain why he says you are RH, especially if he hasn't tested you for it!! That doesn't really sound like due diligence to me.....and to not have referred you on an emergency basis to a specialist is not acceptable. So please, be firm and insistent, you are your best advocate, so go for it!! One last thing, are you able to be roused, like if one of the little ones is crying or comes to your bed to wake you because of a tummy ache or whatever? If you are, perhaps you can ease your anxiety a bit by knowing that you can respond or act if needed....my thoughts and prayers are with you/Blessings/L