electrolyte
Member
- Messages
- 9
- Type of diabetes
- Prefer not to say
- Treatment type
- I do not have diabetes
Before your wallet goes ouch, you can get a free trial CGM over at the Freestyle website. I hope it'll help!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".
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.Before your wallet goes ouch, you can get a free trial CGM over at the Freestyle website. I hope it'll help!
Jo
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).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.
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.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 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".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 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!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.
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.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.
I will! Hopefully I'll have some good data to work from, over the 4 weeks (ish) I'll be trying it out for.Would you keep us updated with your findings from the CGM @electrolyte ?
I really hope it provides some useful info for you.
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).@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.
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