MCAS
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So pretty sure I have MCAS amongst a few other things maybe linked to RCCX gene. I'm not typical MCAS but crash asleep reactions and cervical instability/hypermobility and mild pots. I have quite bad shakiness and muscle weakness.
Famotidine helps as does cypro and ketotifen but not with the muscle weakness and shaking. They help with reflux and insomnia and anxiety.
Has anyone delt with MCAS and managed to reduce a lot of their symptoms? The cervical issue is mostly only a problem if I exercise. Exercise really sets me off but I so want to move and dance even though I feel like fainting quite often after class.
I take 1 grain of armour a day but do wonder if I should just take t3...
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@LucyJ u should be able to tell if you have an ongoing problem from MCAS by extreme skin reaction because of their abundance in skin , hives relentless itching , at least regularly if not continuous to a extent
As an initial broad check, how much protein do you get & calories & carbs on a typical day? what supplements do you take regularly? initially sounds like blood sugar crashing without enough support, or instead a problem transporting glucose maybe. cronometer is a good tool for measuring dietary stuff
also do you notice uncoordinated movements during exercising? like your body moving in uncontrolled directions, or generally poor co-ordination? -
@cs3000
So I have a history of eczema and my thumb is often still itchy and scalp but I'm not a hives MCAS. I'm anxiety and hyper and fatigue and crash, poor appetite, reflux, POTS, hypermobility and severe nausea, breathing difficulties. I get skin sensory issues and can't handle wet hair and wetsuit but not hives.I'm working to try and get more calories in but the poor appetite sucks for this. Even periactin doesn't seem to increase my appetite. I react to most supplements so don't take anything regularly. I have been recommended vitamin d and k2. If I take antibiotics and I don't take famotidine with it, I crash 2 hours post and sleep for 3 hours. If I take famotidine this doesn't happen. So maybe its just severe histamine in my gut and sibo not classic MCAS
Not so much uncoordintation but more shaking so bad it's had to balance and muscles almost collapsing. Often I can get through something but I'm shaking and feel very weak and dizzy after.
Any ideas for increasing appetite and calories welcome!
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@cs3000 Just remembered I get hives from sun exposure on my chest so yeh maybe is actual MCAS
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@LucyJ hmm i dont have much appetite regularly but 1/2 a cup of OJ i noticed brings it back some. probably the hesperidin. but i take 250mg-500mg tudca on empty stomach too so could be either
maybe a big part of your situation is the lack of protein carbs and calories for prolonged time. i dropped my protein down to 35g recently for something and my legs got noticeably weaker just walking around , in a pretty quick time
I add dextrose to food / drinks and a bit of sugar for extra calories. but depends if youre processing carbs well. u might have nutrient deficiencies impairing that if havent been eating well for a while depending on how extreme. if dont have a blood test cronometer might highlight some
If its not that basic i wonder if its something to do with a glucose transporter too, maybe the low appetite could be part of that the hunger peptide ghrelin increases glut1, usually big transporter defects comes with problems with coordination or seizures but i guess there could be varying extents maybe,
i read you were on low carb for 15 years, and the crashing after antibotics thing is interesting because some of them interfere with glucose transport ,another thing u may want to test is less thyroid hormone while not eating enough (antagonising cortisol, without enough carbs/fat intake foundationally, doesnt leave room for backup and can create fatigue). a drop or 2 was ok but i felt extreme tiredness even on a few drops on low calories.
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@cs3000 Thank you. Yes I do think lack of calories and getting enough protein is a big part.
I have this huge resistance to use chronometer, not entirely sure why. I really struggle to stick with it (out of character for me).
I do handle dextrose so I could get some. I stick to fruit juice for most of my carbs as you might have read I really struggle with fibre and starch still.
Truthfully I'm really co-ordinated and I've never had seizures.
I think the antibiotics is the die off releasing histamine that makes me crash. I wake up feeling hungover and woozy.
Surprisingly the armour makes me feel calm but I could try that.
The fatigue isn't normal fatigue (when I crash). Its like I'm hyper running around doing all my tasks and then wham it hits me and I cannot move, I have to fall asleep straight away. Maybe it's my liver.
Another thing is my teeth chatter constantly and I react very badly to clonidine and benadryl with hyped adrenaline surges and I can't sleep after taking them!? I have also decided today that ketotifen makes me worse re asthma/ breathing so I'm stopping it as swear it's increasing histamine (I only started it 1.5 weeks ago)
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@LucyJ I'm in a similar situation. Started taking a multi vitamin recently and seem to help with digestion. Obviously dialing in thyroid dose is important, but making sure you get enough micro nutrients I think can be helpful if you've lacked in appetite for a while. I don't think you need cronometer every day but it can show you "oh I don't get enough zinc and magnesium" and then correcting that.
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@LucyJ oh weird so running on high adrenaline then suddenly drop into stupor.
something that might be playing a role, salt deficiency from the high volume of liquids and not enough food with sodium to counterbalance.
and thyroid can make sensitivity to adrenaline higher. i guess usually it balances with adrenaline levels coming down, but with undereating and over drinking liquid with not enough salt this could be continually spiking it.@LucyJ also another thing you mentioned hypermobility, might be worth trying methylfolate, apparently high folate levels common with this as folate isnt being converted to the active form. dizziness also mentioned , and u mentioned skin sensitivity, skin effected a lot with this too https://haidut.me/?p=2222 , but i guess a lot more things can effect connective tissue too if a lot of deficiencies
@jonk yeah good tool to show some things that are missing , just 1 time can give an idea if diet isnt fluctuating a lot
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@cs3000 Yeah been running on adrenaline since I can remember. Very stressful childhood and excessive exercise and severely underweight. I eat salt to taste but could try measuring it out and making sure I am getting 5g.
I haven't tried methylfoate for 2 years but it was one of the worst histamine gut reactions I got. I was taking bioceutical MTHF. I think I read if you were deficient in other b vitamins then you could have histamine response from folate. I'm better with consuming liver which you've reminded me to do.
I wish I could take tudca on an empty stomach! My upper gi is so sensitive and I feel a lot of adrenaline comes from my stomach and small intestine being irritated. Hence famotidine helping so much. So you take tudca before you eat each day?
@Jonk which multi do you take? I have pretty bad reactions to most supps. I think you replied to me on the old RPF suggesting a b vitamin but yeah everytime I try them I seem to get anxiety.(probably because they irritate my super sensitive upper GI) I'm really trying to find a way to commit to cronometer and meal plan as my goals for this year. So will start with one day and see how I go. Thank you
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@Jonk which multi do you take? I have pretty bad reactions to most supps. I think you replied to me on the old RPF suggesting a b vitamin but yeah everytime I try them I seem to get anxiety.(probably because they irritate my super sensitive upper GI) I'm really trying to find a way to commit to cronometer and meal plan as my goals for this year. So will start with one day and see how I go. Thank you
I think it's a Swedish brand.
https://www.svenskhalsokost.se/healthwell-multivitamin-man?da=14-46It's trial and error for sure. Maybe it's safer with liver and oysters since most supplements have side effects. Have you read Broda Barnes Thyroid the unsuspected illness? You mentioned you're on one grain of thyroid. Highly recommend if you haven't read it yet. It's on archive.org
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@Jonk Yep that's actually the book that got me to start taking it given my history with bronchitis and explained a lot of my childhood issues. I should potentially re read it. I feel like I need more of it (armour) but then freak out its too much T4...
Thanks for sending that supp through, I will have a look -
@LucyJ
how much fluid are you drinking daily with most of the carbs as liquids?i lowered the tudca to 125mg, just 1x empty stomach in morning for ER stress (i think its the oj that bumped up appetite a bit), maybe not good if have a histamine problem. idk it can lower allergy reactions but its also a histamine receptor agonist (why it promotes wakefulness for a few hours)
idk how relevant / how much youre drinking & salt intake in relation to that (assuming its low with low food intake) but as an example eating low salt trying to prevent intestine irritation, even 1 small cup of water at night was enough for insomnia into early hours of the morning from the adrenaline. & i dont crave salt much even with clear urine
youre also getting a lot of acid from high juice -
@LucyJ Okay! But yes if you're only on 1 grain I would not dismiss the possibility of hypo. Obviously tracking temps and pulse and all that. I dismissed it for a long time since I never saw any big improvements from the Idealabs tyromix/tyronene, but now I'm giving it a shot again with another brand.
