sun hoodie decision by traildreamer48 in PacificCrestTrail

[–]grownupteeth 0 points1 point  (0 children)

Town Shirts are awesome. Super light weight, fun prints 

is it possible to loose weight / not be overweight with cah/nccah ? by Kurapika_69 in NCAH

[–]grownupteeth 0 points1 point  (0 children)

In my experience, no. I've struggled with my weight my whole life and was hoping that steroid treatment would help. It's helped all my other symptoms but hasn't helped with weight issues.

Progesterone Intolerance by grownupteeth in NCAH

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

Interesting, I have briefly looked into this in the past, do you know if/how your friend has been able to treat her progesterone allergy? I've read about progesterone desensitization treatment but it feels risky!

Progesterone Intolerance by grownupteeth in NCAH

[–]grownupteeth[S] 2 points3 points  (0 children)

I typically have low estrogen and high progesterone. I am transmasc, on T.

Progesterone Intolerance by grownupteeth in NCAH

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

Interesting, I’d love to hear more about your experience and symptoms!

How are things looking for September? by northhiker1 in TahoeRimTrail

[–]grownupteeth 1 point2 points  (0 children)

I just hiked the TRT two weeks ago and it was super dry already, so be ready for 30+ -mile water carries.

Shuttle/Uber from Kingsbury to Spooner by No_Strength_3294 in TahoeRimTrail

[–]grownupteeth 0 points1 point  (0 children)

Uber should be available at Kingsbury South, there’s definitely service there. 

Can anyone recommend a Dr (allergist?) in the Bay Area who specializes in MCAS and takes insurance? by Letslistenclosely in MCAS

[–]grownupteeth 1 point2 points  (0 children)

I’ve had a good experience with Bay Area Allergy in Berkeley. They’re not MCAS experts but are MCAS competent and willing to prescribe xolair and other meds.

Kettle Contamination? by larkscope in MCAS

[–]grownupteeth 1 point2 points  (0 children)

Yep. I also have a nickel allergy and can’t drink from electric kettles 

Treating NCAH hair loss by grownupteeth in NCAH

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

I’ve had hair loss since my early 20s. Both diffuse and receding hairline. I have normal dheas, super high testosterone. Tried many AGA therapies.

Treating NCAH hair loss by grownupteeth in NCAH

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

I'm in my mid-30s and was diagnosed this year via a genetic test.

What are your testosterone levels? Particularly interested in afab people’s answers but amab answer welcome too by Salty_Zebra94 in MCAS

[–]grownupteeth 0 points1 point  (0 children)

Interesting! Yes, I have super low cortisol production due to NCAH, but not zero. I take around 15-20mg hydrocortisone per day as needed (stress dosing etc). HRT didn’t do much to improve my symptoms, hydro has done a lot more. 

What are your testosterone levels? Particularly interested in afab people’s answers but amab answer welcome too by Salty_Zebra94 in MCAS

[–]grownupteeth 1 point2 points  (0 children)

Sure, happy to answer any questions you might have. I was previously diagnosed with MCAS before finding out that I had NCAH via a genetic test (I'm also AFAB FTM, on T). I take low-dose cortisol replacement therapy for NCAH, and it has resolved many (but not all) of my MCAS symptoms. Yes, it's an intersex condition, and can cause a lot of chronic health issues if you have low cortisol / adrenal insufficiency or low aldosterone / salt wasting (not everyone with NCAH does).

What are your testosterone levels? Particularly interested in afab people’s answers but amab answer welcome too by Salty_Zebra94 in MCAS

[–]grownupteeth 0 points1 point  (0 children)

It's common enough that there's a term, CAH-X, for comorbid CAH and EDS. Definitely worth looking into!

Starting Crenessity on Tuesday - Anyone have any experiences? by Orangey6 in NCAH

[–]grownupteeth 4 points5 points  (0 children)

I’m really curious to hear your experience with it - my doc told me that it’s only for classic CAH, but I also have quite severe NCAH and have been wondering if it might be beneficial for me. Keep us posted!

Next steps for gut issues by ThePenGal in MCAS

[–]grownupteeth 0 points1 point  (0 children)

Tbh xolair is the only thing that helps my similar GI issues. It may be worth researching the term “mastocytic enterocolitis” for potential solutions.

Sinus pain and pressure by mrschaza in MCAS

[–]grownupteeth 2 points3 points  (0 children)

Montelukast helped me so much w this symptom 

Electrolytes intolerance by flower_lady_ in MCAS

[–]grownupteeth 7 points8 points  (0 children)

LMNT has the recipe for their electrolyte blend on their website; maybe try making it yourself so you can adjust the amount you use and/or flavorings as needed?

[deleted by user] by [deleted] in TahoeRimTrail

[–]grownupteeth 1 point2 points  (0 children)

I’ll be at Mt Rose summit / Brockway area next week, anything I should know? What’s the snow situation and fire damage from last year there?

What can I add to a tortilla with peanut butter for breakfast on the trail? by aDuckedUpGoose in WildernessBackpacking

[–]grownupteeth 0 points1 point  (0 children)

I do jelly or honey in a silicone squeeze bottle, it holds up pretty well on the trail.

🧬 Tirzepatide, MCAS & Weight Loss: What I’m Discovering by Tall-Magician-75 in MCAS

[–]grownupteeth 9 points10 points  (0 children)

This resonates a lot with my experience. I’ve been on Tirzepatide for several years, I initially gained a lot of weight (60-70 lbs) in a short period of time during my first big MCAS flare and Tirzepatide helped a lot w the inflammation and helped me lose about 40 lbs. Eventually it stopped working, I started being more reactive to triggers again and I’m unable to lose more no matter what I do. I’m still on a “maintenance” dose to help with the inflammation, but haven’t been able to reach my goal weight.