UPDATE June 8th! - Hello!

[electrolyte]

I've been having symptoms of reactive hypoglycaemia since I was a child, with various horrible experiences trying to get answers, but lately I've felt ready to try again. I'm on a very long NHS waiting list, but I do have a small insurance policy that will pay for consultations so I've got an appointment in the first week of June to try and get it officially written down at last!

One of my specialists for another of my conditions has suggested a CGM might help me out - it's impossible to spot a hypo starting when I'm having so many other symptoms all at once, but if my phone could let me know before I slam into a wall then I'd have much more of a chance. The flare-ups of said condition (MCAS) tend to hit my stomach the hardest, too, both causing a hypo and worsening the effects of it, since my body is basically empty afterwards. I also just can't always spot a normal hypo getting started because "I feel a bit shaky/weak" could be one of my other conditions needing attention.

Anyway, all in all, it seems best to try again at a diagnosis. A previous specialist did rule out diabetes, but I learned in my appointment with the nurse to get this referral that he'd written to my GP blaming my "small build" for all my symptoms. Genetically, I have a very small frame, and I was an athlete. I'm absolutely furious as I think that's what stopped me getting any further with the diagnosis in 2016! Well, it's been left untreated for so long that I'm now 60lbs heavier than when I saw him, so at least no one can blame my weight this time...

In the meantime, now that I finally know most of my dietary requirements & restrictions with MCAS (which has decided not to follow the rules, I guess), I'm going to make sure my diet is as mathematically perfect as possible and I'll also be testing a CGM for the two weeks leading to the appointment (my wallet says ouch) to be able to say "yes it would help" or "I don't need this after all".

 

[JoKalsbeek]

I've been having symptoms of reactive hypoglycaemia since I was a child, with various horrible experiences trying to get answers, but lately I've felt ready to try again. I'm on a very long NHS waiting list, but I do have a small insurance policy that will pay for consultations so I've got an appointment in the first week of June to try and get it officially written down at last!

One of my specialists for another of my conditions has suggested a CGM might help me out - it's impossible to spot a hypo starting when I'm having so many other symptoms all at once, but if my phone could let me know before I slam into a wall then I'd have much more of a chance. The flare-ups of said condition (MCAS) tend to hit my stomach the hardest, too, both causing a hypo and worsening the effects of it, since my body is basically empty afterwards. I also just can't always spot a normal hypo getting started because "I feel a bit shaky/weak" could be one of my other conditions needing attention.

Anyway, all in all, it seems best to try again at a diagnosis. A previous specialist did rule out diabetes, but I learned in my appointment with the nurse to get this referral that he'd written to my GP blaming my "small build" for all my symptoms. Genetically, I have a very small frame, and I was an athlete. I'm absolutely furious as I think that's what stopped me getting any further with the diagnosis in 2016! Well, it's been left untreated for so long that I'm now 60lbs heavier than when I saw him, so at least no one can blame my weight this time...

In the meantime, now that I finally know most of my dietary requirements & restrictions with MCAS (which has decided not to follow the rules, I guess), I'm going to make sure my diet is as mathematically perfect as possible and I'll also be testing a CGM for the two weeks leading to the appointment (my wallet says ouch) to be able to say "yes it would help" or "I don't need this after all".

Before your wallet goes ouch, you can get a free trial CGM over at the Freestyle website. I hope it'll help!
Jo

 

[electrolyte]

Before your wallet goes ouch, you can get a free trial CGM over at the Freestyle website. I hope it'll help!
Jo

Ah, I've already paid for it! It looked like I'd have to be diagnosed to be allowed, there's a box you have to tick confirming you've been diagnosed with a type of diabetes before you can continue to the next page for the trial.

 

[JoKalsbeek]

Ah, I've already paid for it! It looked like I'd have to be diagnosed to be allowed, there's a box you have to tick confirming you've been diagnosed with a type of diabetes before you can continue to the next page for the trial.

Right, I forgot about that bit... They can't actually get in touch with your healthcare providers to check whether or not you told a one-off, white lie though. Not that I'm endorsing it. But should the need arise again and things be tight... You know. Something to keep in the back of your mind, maybe. (Mods, I have no idea whether this is okay to say, so feel free to delete the reply entirely).

 

[Melgar]

Hi and welcome to the forum @electrolyte. The MCAS sounds challenging. I get significant Urticaria over my body along with Herpetiformis after consuming any gluten. So your MCAS affects your internal organs too? I'm assuming yours is your own body's response to a food/s. Mine seems to affect my skin only.

RH Members here go low carb as a means of controlling their hypoglycaemic events, as it is a condition brought about by your body over reacting to carbohydrate consumption , and the pancreas produces too much insulin/ or doesn't stop producing insulin when it should. We do have a sub forum for members with Reactive Hypoglycaemia . Have you been formally diagnosed with RH ? We cannot offer medical advice , but you may find it useful to browse through the RH forum and see how other members have coped with the condition.

 

[electrolyte]

Hi and welcome to the forum @electrolyte. The MCAS sounds challenging. I get significant Urticaria over my body along with Herpetiformis after consuming any gluten. So your MCAS affects your internal organs too? I'm assuming yours is your own body's response to a food/s. Mine seems to affect my skin only.

RH Members here go low carb as a means of controlling their hypoglycaemic events, as it is a condition brought about by your body over reacting to carbohydrate consumption , and the pancreas produces too much insulin/ or doesn't stop producing insulin when it should. We do have a sub forum for members with Reactive Hypoglycaemia . Have you been formally diagnosed with RH ? We cannot offer medical advice , but you may find it useful to browse through the RH forum and see how other members have coped with the condition.

I've actually only known people who had MCAS worse than me, I almost felt like an imposter in the MCAS support group I was (briefly) in on Facebook! I get symptoms of anaphylaxis just on breathing some things in (some are food, some are not) and what I'd describe as being like "severe food poisoning" sometimes from things I've eaten, but also just from breathing things in or touching them.

I was down to quite a narrow list of things I could safely eat, but once I'd sorted out the environmental factors and my gut microbiome had recovered from being decimated by back-to-back reactions, I was able to reintroduce most of them. I still react to several things, but it's relatively well-managed now and I feel a lot better, way more energy etc.

I'm hoping now that I'm feeling so much better, I can get back to sports-ing at the level I used to. The symptoms of several of my conditions were best controlled in the last year I was training "full-time" - more like 12-15 hours a week by the end - when I seemed to have found the sweet spot where I barely had any Ehlers-Danlos symptoms because I was so fit and strong (but not pushing too hard) and my blood sugar wasn't even a consideration because the intensity of that type of exercise has a huge effect on it for me. I've tried low carb in the past and not had a good time, so my aim is to see if the sports+how I was eating then+knowledge I have now combo will work before I go back to low carb.

 

[Melgar]

I use exercise to control my blood sugars, plus I'm careful what I eat, just 1 main meal a day and no later than 5pm. I do have a protein shake for breakfast. I exercise after eating. I've been a competitive runner for much of my life, but now I just walk, about on average 25,000 steps on rough terrain per day, once a week I do a steep climb. I do have trouble keeping weight on.

What happened with your low carb , if you don't mind me asking?

 

[electrolyte]

I use exercise to control my blood sugars, plus I'm careful what I eat, just 1 main meal a day and no later than 5pm. I do have a protein shake for breakfast. I exercise after eating. I've been a competitive runner for much of my life, but now I just walk, about on average 25,000 steps on rough terrain per day, once a week I do a steep climb. I do have trouble keeping weight on.

What happened with your low carb , if you don't mind me asking?

I gave it a good run, past the point where my body would still be adjusting, but my energy level was still through the floor. I tried it when I had more than two months where I could get away with not doing any training, so I wouldn't need to worry about energy etc. But it came time to start training again and I still felt like a dead slug - I'm not sure I could even have walked all the way to training, let alone done anything when I got there! And since my main sport is one where I could burn through my entire glycogen stores in a single session - well, I'm sure some people could have handled it low carb, as I've seen there are people who can even do an Ironman on keto, but I wouldn't have been one of them. I seem to do much better on "some carbs, but be sensible about it".

 

[Pipp]

Hi @electrolyte ,
your situation seems quite rare, in that you have a mast cell disorder, Ehlers-Danlos and also, possibly, Reactive hypoglycaemia. As someone with a mast cell disorder myself, you have my sympathy. All difficult to control, and not very well understood, generally.

What sort of treatment do you have for the MCAS? Do you see a consultant regularly? How did you cope being an athlete, with Ehlers Danlos?
Sorry for all the questions. It is just that generally I believe most members will not have heard of these conditions. Even the RH is quite unusual here. Though we do have a few members, and a sub forum.

I do think using a CGM is a good idea. I am not sure how a consultant, or indeed more than one would manage all conditions in one patient, as would be difficult to determine which of the condition’s symptoms would take precedence when trying to provide relief.

 

[electrolyte]

Hi @electrolyte ,
your situation seems quite rare, in that you have a mast cell disorder, Ehlers-Danlos and also, possibly, Reactive hypoglycaemia. As someone with a mast cell disorder myself, you have my sympathy. All difficult to control, and not very well understood, generally.

What sort of treatment do you have for the MCAS? Do you see a consultant regularly? How did you cope being an athlete, with Ehlers Danlos?
Sorry for all the questions. It is just that generally I believe most members will not have heard of these conditions. Even the RH is quite unusual here. Though we do have a few members, and a sub forum.

I do think using a CGM is a good idea. I am not sure how a consultant, or indeed more than one would manage all conditions in one patient, as would be difficult to determine which of the condition’s symptoms would take precedence when trying to provide relief.

I actually didn't know I had Ehlers-Danlos until I came back to sports after a break. I'd done my main sport since I could walk, all the way up to full time training until I was 21. It made me so strong that, aside from more pain and fatigue than everyone else, the only sign of anything amiss was when my shoulder just sort of... fell out during a simple movement (everything tore around it, but it clunked back in on its own) and a few injuries that weren't unusual. My joints were so unsupported when I came back to sports that I picked up silly injuries out of nowhere as my muscles held so tight to keep them in place. It took coming back to sports, going on a trip where I shuffled round a museum and got the worst headache, somehow decided I was going to inflict it on a character in something I was writing at the time, and ended up discovering that none of what I was experiencing was normal!

I tend to react to most medications, or at the very least get the rare side effects. I only take one antihistamine, fexofenadine, because it's the only one that doesn't knock me out. I get a hangover and flu-like symptoms from several of the others. I manage MCAS by having spent 2 years detailing every food I ate/substance I was in contact with and my response so I can avoid food and environmental triggers; POTS with a high salt diet, compression socks, not standing on the spot, and trying to stay fit; EDS with being fit and strong (and mental fortitude, because no pain relief); and my blood sugar - when it's behaving - by years of learning both what science says should work and when to ignore that because of how my own body responds. It's not easy, because I'm also autistic and have ADHD, so sometimes it's "I'm eating this bowl of cereal or I won't eat anything at all" rather than what would be perfect, or losing track of time or not being able to tell anything is wrong. And of course, what works today might not work at all tomorrow because one of my other conditions has changed the playing field...

I was diagnosed with MCAS and POTS by a private GP, who I could see for a follow-up if needed, but I'm otherwise on my own. No specialist for EDS because they only offer physio and pain relief, and I see a physio privately (with that same small insurance policy) who has EDS herself. 3 of the GPs I can see are knowledgable and supportive, but getting an appointment takes a while and there's not much they can do except agree to shared-care any prescriptions that come in from a specialist.

But really, after more than a decade of knowing about some of these (and nearly 3 decades of blood sugar chaos), I tend to find I have to explain what most of the conditions even are to any medical professional who isn't an anaesthetist and that actually I know more than them, or certainly more about how they might interact. My usual procedure is to find the answers myself, and then get a kind GP to write it down somewhere official so it's on my records. Often my solution isn't the most logical, but the one that leaves me feeling the most well and able to handle all the other stuff.

 

[Pipp]

Wow! What sports, @electrolyte? I know, I am so inquisitive, and a bit in awe of you, you see. I have triggers for my Mastocytosis, which include exercise. Some foods, but mainly environmental triggers, like aromas, other people’s perfumes, and sweat, tree pollen, some animals, the weather, even. I had to stop dance and gym as a teenager, because I would get skin lesion flare ups, that would take days or even weeks to settle. I had joint pain, dislocations and diagnosed arthritis at age 14. It was very restricting, still is, to a lesser extent. (i am rather old now, retired). Fexofenadine and Monteleukast meds work for me. Though sometimes I need steroid meds, too. React to lots of medications including morphine and some anaesthetics, which is challenging. Fortunately, biopsies have made my diagnosis of mastocytosis possible. Treatment is more hit and miss.

I like your plan of using CGM to test the foods you have determined are ok for your MCAS. By keeping accurate records of what you consume and the blood glucose levels it could be possible for you to identify any triggers for RH.
Please keep us updated regarding your findings.

 

[electrolyte]

Wow! What sports, @electrolyte? I know, I am so inquisitive, and a bit in awe of you, you see. I have triggers for my Mastocytosis, which include exercise. Some foods, but mainly environmental triggers, like aromas, other people’s perfumes, and sweat, tree pollen, some animals, the weather, even. I had to stop dance and gym as a teenager, because I would get skin lesion flare ups, that would take days or even weeks to settle. I had joint pain, dislocations and diagnosed arthritis at age 14. It was very restricting, still is, to a lesser extent. (i am rather old now, retired). Fexofenadine and Monteleukast meds work for me. Though sometimes I need steroid meds, too. React to lots of medications including morphine and some anaesthetics, which is challenging. Fortunately, biopsies have made my diagnosis of mastocytosis possible. Treatment is more hit and miss.

I like your plan of using CGM to test the foods you have determined are ok for your MCAS. By keeping accurate records of what you consume and the blood glucose levels it could be possible for you to identify any triggers for RH.
Please keep us updated regarding your findings.

First it was dance - I did that from the age of two, through full-time training. I danced with an amateur physical theatre company right up until the plague of 2020, the odd professional singing job here and there but I wasn't trying that hard (I was trying to move into game dev and only dance my own work). I picked up gymnastics during my full-time dance training and then kept it up, and I've competed as an adult. I'd like to compete again, now I know I'm eligible for disability gymnastics - how I ever beat healthy 17-year-olds as a disabled 27-year-old back in the day, I'll never know.

When I thought my health would never improve, I was trying to get into cycling as a low-impact option that still let me push myself. I used to hate running because I couldn't breathe (MCAS) but I was still decent at it, and I'm just about to start again. I'm waiting on surgery at the moment but I'd like to cycle more once that heals. I miss swimming as well but I was always so tiny and dense that it was 10x the work, so I'll wait until I'm a bit fitter. I have a wild notion about doing a triathlon at some point though! At the moment, I'm trying to work back up to full dance fitness, to start taking classes again after the summer and also work on my own choreography.

I wasn't really built for sitting down - even my hEDS gets angry if I stay still too long, so being forced into stillness by MCAS was horrible. I also didn't realise just how much the exercise was managing my blood glucose level until I had to stop, because it feels impossible by food alone even if I get it mathematically spot-on.

 

[Pipp]

Would you keep us updated with your findings from the CGM @electrolyte ?
I really hope it provides some useful info for you.

 

[electrolyte]

Would you keep us updated with your findings from the CGM @electrolyte ?
I really hope it provides some useful info for you.

I will! Hopefully I'll have some good data to work from, over the 4 weeks (ish) I'll be trying it out for.

 

[electrolyte]

So this turned out to be a wild ride!

It was obvious very quickly that I was getting a lot of false low readings on the CGM. We're talking as low as 3.3 while I felt totally normal. A family member had a blood glucose monitor left from their own health investigations, so I started testing the supposed lows, where I would then get a reading of, say, 5.2 or something similar. The CGM reading would always come back up on its own shortly after.

At the same time, I was experimenting with food. I couldn't reproduce the hypo that made me get the CGM and make an appointment. I also very clearly didn't have either reactive hypoglycaemia or fasting hypoglycaemia, based on the data I was getting.

I've started Couch to 5K just in my long hall at home, so I had my phone on hand to check the numbers if I felt funny while running. Out of nowhere, I got an alarm and the CGM reading dropped all the way to 2.9. I felt absolutely fine - until I stopped to screenshot the reading and took a drink while I was there, when suddenly my heart did a really POTS-y thing. I'm diagnosed with POTS and have had it since at least the age of 5, though I didn't know until more recently. That 2.9 sorted itself out once I'd finished the running session and gone back to just walking for a bit afterwards.

With this new information, I looked back at the lows over the past few days. Standing for ages while my mum talked about something and I didn't want to be rude and walk off? CGM: 3.3 but it came back up on its own shortly after I sat down on the floor. Sitting at my desk for a while? 3.2, but it came back up on its own when I moved around. Wearing the FFP3 mask that's the only one that fits me but pinches my nose so I can't breathe? 3.0, but recovered when I took it off.

My theory at this point was that perhaps the POTS blood pooling (feet/legs with gravity, stomach with meals) meant there wasn't enough glucose-rich blood near the CGM and it was panicking and thinking I was dying. I decided to try treating the low readings as a POTS alarm instead of a blood glucose alarm - instead of getting some sugar in, I would go and lie down with my legs up at a right angle. It only took ten minutes max for the CGM number to come back up into the mid-fours on its own every time. And when it dropped to 3.1 during my next run, I tested my blood at a happy 5.2, which matched how I felt.

By the time my specialist appointment came round, I'd come to the conclusion that I was right about the blood pooling causing false low readings.

The endocrinologst was amazing - really knowledgable about his side of things, and really open and receptive to my POTS knowledge and speculation. I ran through the various thoughts I had, and he confirmed that my science was solid. We decided together that this is what's happening:

Blood pooling causes a false low reading because there's not enough glucose-rich blood near the sensor. Sometimes I feel fine (if a little POTS-y) and probably wouldn't even notice anything had happened without the CGM. Sometimes my body picks up on it, releases adrenaline in a panic, and that speeds up the movement of food in a dumping syndrome sort of way, giving me lower-but-not-hypo blood glucose readings and making me feel borderline hypo (because I am). Rarely, the adrenaline moves the food so fast that I end up with a real hypo when the insulin arrives for that food - or it can happen after an MCAS reaction because those can be like severe food poisoning, all food gone before the insulin arrives.

So, we're agreed. The CGM is acting like a POTS alarm. If I feel icky, or if I get a low reading, I treat it like a POTS moment instead of a hypo. If it gets better on its own, I know it's just a bit of adrenaline from the POTS. I should eat soon, but it doesn't need to be pure sugar - it could be a stage 2 food like milk or fruit or a digestive biscuit. And if it doesn't get better on its own, I'm still in time to treat the real hypo before it gets brutal.

I'm hoping to have a follow-up with the POTS/MCAS specialist as soon as I have the money spare, because I reckon she'd be interested to hear about this! And I can get a much better handle on my health etc. because I don't need to eat "just in case" the moment I feel a little bit off.

Short version: some element of hypoglycaemia but it's being caused by POTS and can be mostly managed by treating POTS, but I should still carry the emergency fruit pastilles for the rare occasions those POTS moments cause a real hypo.

 

[Melgar]

@electrolyte , just a quick mention on CGMs and blood. The CGM doesn't measure blood, it measures interstitial glucose. The theory is glucose levels in blood are the same as the Interstitial glucose.

There is also a delay in the interstitial glucose in relation to capillary blood. So if you look at your glucometer reading it will be around 10 - 15 minutes ahead of your CGM reading.

Also CGM's are less accurate once out of the 'normal range' and can show a lower result when compared with your glucometer. Therefore, it is always best to check a low CGM reading with a glucometer finger prick before acting on the low. Of course, if you are getting symptoms of low blood sugar then that is an important factor.

 

[electrolyte]

@electrolyte , just a quick mention on CGMs and blood. The CGM doesn't measure blood, it measures interstitial glucose. The theory is glucose levels in blood are the same as the Interstitial glucose.

There is also a delay in the interstitial glucose in relation to capillary blood. So if you look at your glucometer reading it will be around 10 - 15 minutes ahead of your CGM reading.

Also CGM's are less accurate once out of the 'normal range' and can show a lower result when compared with your glucometer. Therefore, it is always best to check a low CGM reading with a glucometer finger prick before acting on the low. Of course, if you are getting symptoms of low blood sugar then that is an important factor.

I'm aware of this, but thank you for clarifying in case anyone else was reading! I'm dyslexic so I sometimes don't notice I've missed out bits of what I'm saying (or explained all the relevant parts).

I think the key for me is that I'm not actually getting real lows at all, so the big drops in the readings can tell me when to do something about the impending POTS situation before it gets bad - and on the two or three occasions in a year (usually tied to MCAS reactions now) that it really is low, I've learned the correct steps to sort it out.