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.