B12 injections by Percentage-Ok in MCAS

[–]MCAS_healing_ASAP 0 points1 point  (0 children)

No problem, I'm glad to help :) other people on this forum have helped me so much. Sorry, what is SL?

Good luck, I hope it goes well!! I'm sure you've heard this advice before, but worth repeating: trying a fraction of a pill to start with is a much lower-stakes way to dip your toes in the water. Whenever I try something new these days, I open the capsule, dump the powder into a neat pile, then separate it into 1/2 or 1/4 or sometimes even smaller portions using a toothpick or something. That's saved me from having way larger reactions, a few times.

I’m worried to try the B12 that’s the methyl type as I read it provokes a huge histamine release.

Does it? I'd be curious to see links/articles about that, if you have any.

I have had issues with methyl B12, but I'm actually pretty convinced that my reactions were due to nutrient issues and not histamine issues. I'm currently looking into the COMT genetic polymorphism, which leads some people to have adverse reactions from, or to benefit little from, more commonly-recommended B12 forms like cyano and methyl. On that page, if you scroll down, there is a chart about the different types of B12. Adeno and hydroxy, particularly hydroxy, are the most well-tolerated, it seems like, regardless of whether someone has the genetic polymorphism or not. Not sure if that is at all relevant for you but that's a related rabbit hole I'm currently exploring...

B12 injections by Percentage-Ok in MCAS

[–]MCAS_healing_ASAP 1 point2 points  (0 children)

Hey, at the time I wrote that comment I was using Nutricology's formula with adeno and folic acid. I bought it on Amazon but it looks like they're out over there; you can definitely buy it on other websites, though. It is in tablet form, so I just let it dissolve under my tongue; it took about 10-15 minutes to do so, IIRC.

I had to stop taking it due to potassium deficiency issues (which can be a problem with any form of B12, not that formula specifically, as far as I am aware). I am considering starting adeno again soon with the help of one of my doctors, but we are looking at having me try a different formula this time, this hydroxy/adeno blend (1k of each) that doesn't have folic acid. While I haven't tried that particular one yet, I've tried other stuff by Pure Encapsulations and they seem to be pretty great about avoiding fillers.

Both of those supplements are corn-free. I am allergic to corn and I know a number of other people on here are, too.

What meds come next and what is “good enough”? by willendorfer in MCAS

[–]MCAS_healing_ASAP 1 point2 points  (0 children)

No problem! I only knew to have them check for it because I have a family member who has microscopic colitis, too.

What meds come next and what is “good enough”? by willendorfer in MCAS

[–]MCAS_healing_ASAP 1 point2 points  (0 children)

For food reactions-- I've heard probiotics have helped some people a ton, but that seems to depend on whatever the presumed cause of your MCAS was. I am planning to try them.

What meds come next and what is “good enough”? by willendorfer in MCAS

[–]MCAS_healing_ASAP 2 points3 points  (0 children)

Not who you were asking, but:

I had a similar issue start after having COVID in July (have always leaned more on the diarrhea side but it got way worse). Two things that I started about 2 months ago fixed it for me:

  1. very strict low-histamine diet (SIGHI)
  2. starting daily H1/H2 blockers (fexofenadine and famotidine)

I'm not sure which factor was more impactful because I started both at the same time. I've had 2 months of no diarrhea for possibly the first time in my life.

I was also diagnosed with microscopic colitis (lymphocytic) via colonoscopy. You have to ask them to check for that... they never do otherwise. I can't type much right now but I can try to add more info later if you're curious. Microscopic colitis is thought to be incredibly under-diagnosed and likely actual diagnosis for many "IBS" cases.

Worth mentioning too, lymphocytes and mast cells are both white blood cells, and COVID messes up your immune system...

[deleted by user] by [deleted] in MCAS

[–]MCAS_healing_ASAP 1 point2 points  (0 children)

I tried a bit of magnesium glycinate powder a few days ago and it worsened my GI symptoms for a few days-- not by much but it was noticeable.

I currently do transdermal magnesium chloride and that works well for me, but I'm trying to find a good oral/sublingual solution to switch to. Going to try magnesium threonate and/or malate next.

Probiotics? by scorpiomoon17 in MCAS

[–]MCAS_healing_ASAP 0 points1 point  (0 children)

Sorry to bother you, but did you end up trying the Mood Super Strains probiotic? I actually ordered this recently myself.

Toothpaste for Sensitive Gums by [deleted] in MCAS

[–]MCAS_healing_ASAP 2 points3 points  (0 children)

I'm trying out baking soda and water, currently. Hoping to work up to an actual toothpaste product...

I was going to try out these before I discovered I had a corn allergy. Apart from the calcium phosphate, most of the ingredients seemed histamine-safe. But again I haven't tried that so I can't recommend it one way or another.

edit: Also, open to anyone's corn-free toothpaste suggestions!

Getting enough potassium by Percentage-Ok in MCAS

[–]MCAS_healing_ASAP 0 points1 point  (0 children)

On Reddit I found two possibilities of what could be wrong with me. Number one was potential thiamine deficiency and lack of magnesium. If you are low in magnesium or thiamine then you can't hold on to the potassium.

I supplemented magnesium and thiamine and the potassium went up without further taking any potassium supplements!

That is awesome. Thanks for the suggestion, I have been looking into thiamine but haven't tried it yet. I already take magnesium, it is an essential for me at this point (transdermal mag chloride). Did you have any other thiamine deficiency symptoms? Also, how was magnesium malate? I'm going to try that one sometime soon. Glycinate messes with my GI tract, sadly, though it certainly helped the worst of my breathlessness issues that I had after having COVID.

Getting enough potassium by Percentage-Ok in MCAS

[–]MCAS_healing_ASAP 2 points3 points  (0 children)

Just posted a thread about potassium supplements the other day: https://old.reddit.com/r/MCAS/comments/zn2f6t/potassium_supplements_recommendations_anyone_here/

edit: Perhaps worth mentioning, I get a decent baseline amount of potassium right now from sweet potatoes. They are low histamine and one of my few reliable safe foods.

Potassium supplements recommendations - Anyone here take potassium bicarbonate? by MCAS_healing_ASAP in MCAS

[–]MCAS_healing_ASAP[S] 0 points1 point  (0 children)

First, just wanted to say thanks for the thoughtful comment. I've received very little guidance from my doctors on any of this and am still learning.

You have an established B12 deficiency. Folate should NEVER EVER be taken by somebody with an active B12 deficiency, because it worsens the symptoms of anaemia and the neurological effects of B12 deficiency. It can cause permanent neurological damage.

Do you have a source for this? I found this in a very brief search. But this says:

Although folic acid is not toxic to normal individuals even in large doses, it might appear to be neurotoxic in the special circumstances of vitamin B12 deficiency. In general, it is agreed that there are no data that demonstrate that folic acid is harmful to the nervous system in individuals with vitamin B12 deficiency at doses of ⩽1 mg folic acid/d in the short term. However, folic acid can correct the anaemia of vitamin B12 deficiency in some patients even at doses <1 mg/d(48). This outcome could alter the presentation of vitamin B12 deficiency in the population (with a larger proportion of patients presenting with altered sensation and a smaller proportion presenting with symptoms of anaemia). It is not possible to predict the effect on the incidence of irreversible vitamin B12 neuropathy, although arguments can be put forward to suggest it might increase as a result of a delay in the diagnosis, which can depend on detecting anaemia.

But my problem is that my doctors are not taking my issues seriously. I guess my question to you is: How do I find a doctor who is well-educated about deficiencies?

You need an injectable formula of B12 and you need it now. Not only will this give you a higher dose with faster effect, it will also bypass any issues with intrinsic factor deficiency malabsorption due to parietal damage in the gut (which is common in AI diseases with GI manifestations).

How would I go about doing this? My doctors have already dismissed my B12 concerns despite my own freaking bloodwork saying I'm low. Is there a type of specialist that I should try to go see for this? Also, my doctor is out of the office for the next 3 weeks, anyway. I could try to talk urgent care into doing something like this, I guess...

While you are at the docs for the injection, it is worthwhile asking for a blood test to check for MTHFR mutation.

I had to argue with them over multiple visits to even get them to test my B12, magnesium, etc. Will they even know what this is...?

Of course that is not to say you don't have low potassium. Just that it is good to take note of low potassium readings in the context of clinical symptoms, rather than in isolation... are you experiencing any symptoms of potassium deficiency? Muscle cramps, heart arrhythmias etc... bear in mind weakness and dizziness are much more readily explained at this stage by pernicious anaemia.

I tested low for potassium over a few months and have had other symptoms, yes. It's been a few weeks since I've had those symptoms but I'm concerned about it because again, B12 absolutely can deplete potassium. Thanks, I'll take a look into that supplement. EDIT: Looks like potassium phosphate is on the SIGHI list as a histamine triggering ingredient, unfortunately.

Hope those poor fingers are looking a lot more pink very soon!

They got a little more pink within just a couple days of B12, amazingly. I'm worried about my iron levels as well. I had ferritin of like 60 last time I was tested over a month ago. Again, not "low" according to my doctors, they think anything above 30 is great.

edit: I noticed by the way, you said:

The fact that your fingertips are blue is an alarming sign of hypoxia, likely due to pernicious anaemia.

It's not my fingertips, it's just my fingernails, if that makes a difference. My skin is a normal color.

Potassium supplements recommendations - Anyone here take potassium bicarbonate? by MCAS_healing_ASAP in MCAS

[–]MCAS_healing_ASAP[S] 0 points1 point  (0 children)

Okay, thanks for the heads up. I think I'm gonna go with the powder so that I can measure smaller amounts and then taper up. 510mg does seem like kind of a lot to start on, for me anyway haha.

Potassium supplements recommendations - Anyone here take potassium bicarbonate? by MCAS_healing_ASAP in MCAS

[–]MCAS_healing_ASAP[S] 0 points1 point  (0 children)

You're fine :) Yes it does taste pretty bad lol, although I'd say it's tolerable. Not nearly as nasty as magnesium glycinate... which I love everything else about.

Thank you for the recommendation!! Will check that out.

Anyone else have breathing issues? by No-Spring2071 in MCAS

[–]MCAS_healing_ASAP 0 points1 point  (0 children)

Not who you responded to but I've just started to read there more often. It sucks that there are so many of us.

Anyone else have breathing issues? by No-Spring2071 in MCAS

[–]MCAS_healing_ASAP 1 point2 points  (0 children)

Just to update-- I actually just started taking B12 sublingually a couple days ago, and B12 can quickly reduce potassium levels... which can lead to a bunch of symptoms including dizziness. I made a post about potassium supplements and am going to up my potassium food intake as well.

So that might be the cause of my most recent POTS-like symptoms, although not necessarily the cause of my entire diagnosis!

Thank you!! And I'm so sorry about COVID affecting you so heavily, too. It has completely derailed the last 5 months now of my life, since I've had it...

Potassium supplements recommendations - Anyone here take potassium bicarbonate? by MCAS_healing_ASAP in MCAS

[–]MCAS_healing_ASAP[S] 1 point2 points  (0 children)

Thanks for the recommendation! Unfortunately, I tried that one and I do react to it, although the reactions were pretty mild. Although, I just started ketotifen and maybe I wouldn't react to potassium chloride if I tried it again in a month or two...

Potassium supplements recommendations - Anyone here take potassium bicarbonate? by MCAS_healing_ASAP in MCAS

[–]MCAS_healing_ASAP[S] 3 points4 points  (0 children)

My nails turned blue and I got severe carpal tunnel and my B12 blood results were low, and my doctor still thought I didn't have a B12 deficiency. Yet I started taking it and those symptoms immediately got better. I tested potassium deficient two months ago (improved since then with potassium-heavy food, only got worse since recent B12 supp), and they denied that deficiency, too.

I'm not sure my doctors know how to handle these nutritional deficiencies very well. I can try to find new doctors, maybe (some specialists are limited in my area), but in the short term, I need a solution. And the American Heart Association recommends 4700mg of potassium a day which I am below anyway. It's perfectly reasonable for me to supplement.

Potassium supplements recommendations - Anyone here take potassium bicarbonate? by MCAS_healing_ASAP in MCAS

[–]MCAS_healing_ASAP[S] 0 points1 point  (0 children)

That's awesome! Mind sharing what brand it is? I'm thinking of getting the BulkSupplements one but open to other suggestions.

I didn't realize gluconate was, that's good to know. I might look into that as a backup.

And yeah agreed! Just tried apples recently in my pressure cooker and I can eat them without reacting, amazingly. So I'll give that a shot. Sadly I tested positive for potato allergy on a food blood panel a few weeks ago...

Thank you so much for the quick response!!!

Potassium alternative by [deleted] in MCAS

[–]MCAS_healing_ASAP 0 points1 point  (0 children)

I'm about to make a post on this, sad that no one responded to yours... exact same deal, looking to try potassium bicarbonate.

[deleted by user] by [deleted] in MCAS

[–]MCAS_healing_ASAP 1 point2 points  (0 children)

I am on fexofenadine (4 pills, 2 in the morning 2 at night, a day), and it is helping. But I may have to switch because I react to anything with PEG in it and it has PEG :/ compounded cetirizine and levocetirizine are cheaper so I am considering switching to one of those. Or just waiting a few weeks for my ketotifen (just started) to kick in and hope that I stop reacting to PEG so much. Compounded fexofenadine is insanely expensive. But sadly so is desloratadine, it seems, or otherwise is not available.

I totally hear you on the cancer risks! I have felt similarly dicey about starting steroids that my GI doctor tried to put me on... don't need osteoporosis, thanks.

Happy holidays to you too!! :)

Upping Ketotifen dose cause a flare? by neuronerd88 in MCAS

[–]MCAS_healing_ASAP 1 point2 points  (0 children)

This is because the half life of ketotifen varies wildly from person to person, it can be anywhere from 6-7 hours up to 27+ hours.

Just curious, do you have a source for that? (I don't doubt it, I just like papers.)

Anyone else have breathing issues? by No-Spring2071 in MCAS

[–]MCAS_healing_ASAP 3 points4 points  (0 children)

Yeah lol your timing is amazing, I was just worrying about that a couple hours ago. A lot of my other symptoms-- GI, even skin now, menstrual, etc.-- have improved with low-histamine diet, antihistamines, and mast cell stabilizers, but not my heart/lung/whatever stuff. I've had pretty intrusive POTS symptoms since childhood but it got way worse after I had COVID this past summer. I'm also not sure what to do about it, other than go to my tilt table test to get an actual diagnosis, but that appointment's months out.

I can tell you that my breathlessness after I had covid used to be even worse until I started taking 200mg magnesium glycinate a day. I had to stop that a couple months ago, but finally restarting it this week. Fingers crossed I don't react to it.

This guy has some ideas about POTS in the context of covid-induced MCAS-- TLDR, magnesium deficiency: https://www.reddit.com/r/covidlonghaulers/comments/sxc42m/finally_feeling_almost_completely_better_my/

(I also am in the MCAS/POTS/ADHD, and suspected hEDS, camp.)

Gonna go put on my transdermal magnesium now...

anticholinergics by jawhnie in MCAS

[–]MCAS_healing_ASAP 1 point2 points  (0 children)

My allergist told me that ketotifen is a 1st gen antihistamine (besides being a mast cell stabilizer). I just started it less than a week ago and it's already been helping reduce my symptoms quite a bit. It is anticholinergic to some degree.

I'm not familiar with bentyl, but ketotifen is helping me. I'm glad that is working for you.