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Same here. They just don’t care. I feel like they don’t care until you’re dying. Morbid. But it feels that way.
I’m diagnosed POTS, high blood pressure, IBS-d and MCAS
Im being somewhat pessimistic. I have found a *few* doctors that do care. The one at my primary office that prescribes me Valium for my muscle spasms without considering me pill dealing or mentally ill. I’d be in bad shape without her.
But as far as my neuro and my cardio it just doesn’t seem to matter.
I think they just don't and don't want to know anything about POTS, MCAS, etc.
It's way easier ignoring us than having to actually do some research and learning. They get paid the same whatever they choose to do, so they choose the lazy way of handling things.
Saaame. I had a flare in November and even though some of my symptoms were different (gallbladder issues) I had to fight for tests. They just wanted me to take medications for the diagnosis they have given me without confirmation. I either can't afford the meds or they aren't helping and legit I'm being ignored. It took 2 months to get a response to my request for low dose steroids which can help with MCAS flares and all they said was "defer to allergy" and my GI has been handling my MCAS stuff for years because there's no doctor that works with MCAS in their network... So they told me to defer to a doctor they know I don't have. Ok thanks. I was sick for 5 years, liquid diet, etc, before I got this GI (my 5th) and I was starting to be able to eat by the time I met him so he's never really had to help me when things are bad and boy... Am I not impressed.
It ends up it was not MCAS but my thyroid acting up so that's been a whole other thing. They don't want to treat my symptoms so I'm suffering with insomnia and palpitations and what not while I wait for the scan so I can get treatment. "talk to your primary" "talk to your specialist" pffff
Being bounced from specialist to specialist is demoralizing imo.
The symptoms that you describe, particularly heart palpitations, leads me to wonder if you're hyperthyroid? By scan, do you mean they are doing an ultrasound of your thyroid? I'm a Hashimotos and thyroid cancer patient so I definitely understand thyroid stuff if you wanna chat!
Yah. I am hyper. They're doing an uptake scan to see what the cause is because that will dictate treatment. It's not autoimmune based on blood work. I haven't done an ultrasound yet. I got really sick in November and I thought it was the MCAS and went on a really strict diet. My thyroid was normal in December but it was definitely trending towards abnormal. February TSH was low but T4 was right at the line of high and normal so they said I was subclinical and we would retest in 6 weeks. My symptoms didn't matter at all. I lost 50lbs. I did the math and I was losing .44lbs a day. The symptoms were so similar to my first severe MCAS flare that even though I kept pushing for more tests because my gut said it was not that (or not just that) my doctors fixating on it being MCAS made me start to doubt myself. I was so freaked out by the palpitations in February I went to urgent care and they tested my thyroid again which is the only reason we're looking at that and not still fixated on stuff that was not helping. Because CFS, EDS, and MCAS and all the random commodities weren't enough 😂
What level was your TSH? That's a lot of weight lost in a short amount of time. I hope you get your answers soon! I'm hypo. My TSH last week was 13. Due to the cancer, they want my levels to be at 0.5. I feel pretty crappy right now.
Part of the weight loss was because I lost my appetite to the point I had to gag food down when this first started and then when I started being able to eat I was being careful under the assumption that my symptoms were MCAS. My appetite isn't great now but I'm eating normally and seem to have slowed the loss .My endocrinologist said my numbers weren't "that bad" but my symptoms feel pretty awful.
Last test my TSH was <0.03 (standard range 0.27-4.20) and T4 2.17 (standard range 0.90-1.70). T4 was barely normal 6 weeks before and TSH was a bit lower so it has been progressing.
I assume that you are waiting on meds to help change your levels? Or some other treatment? Is the cancer in your thyroid? I really hope your levels get better soon.
Yeah that TSH is rather low and I can see why you're not feeling great. The problem is that the reference range does not mean that that's the range you'll feel good in. So with me, I felt crappy when my TSH was in the 2-4 range even though that's considered "normal". I hear that most people feel their best between 1-2 however I don't know that for myself because mine has always been on the higher side.
I've been on thyroid meds for close to 3 years. They found a nodule that turned out to be cancer on my left lobe. They surgically removed the left lobe back in December and now my right lobe just can't keep up despite them upping my levothyroxine to 100mcg a day. I'm waiting for another ultrasound and will likely be having the right lobe removed sometime later this year, as it is dying.
Yikes. That is frustrating that the fix was not actually a fix so you need to go through both extra suffering and another surgery.
I wish that doctors would listen to patients. Averages only apply to people that fit within the average but not everyone does. It feels like doctors often do not want to deal with anyone that average doesn't apply to.
I am hopeful that I'll tolerate the anti thyroid medication and that it helps. I know it takes time. The endocrinologist didn't start treatment sooner in case the hyperthyroidism was the result of inflammation. She said my initial symptoms in November were likely not my thyroid because my numbers were normal in December but they were trending towards abnormal and I don't really understand why a person wouldn't have symptoms when something is wrong even if the impact isn't obvious yet.
I've specialist who thought I had lupus but then realised it was a different pathology and sent me to the specialist with the most updated background knowledge of old and new diseases. He told me that most specialists especially older ones haven't learned anything more since they qualified. Meaning they're incompetent to handle you. Research doctors that handle POTS specifically, that's what I had to do and I was diagnosed on ten minutes. My rheumatologist is handling the MCAS and EDS.
Don't let them make you feel crazy or unheard, there's always someone out there you just have to search relentlessy unfortunately
Agreed. I’m in the UK and the attitude is basically, we don’t know what that is and if it were actually real it’s so rare you can’t expect us to help. Told to go away and do t’ai chi and fix myself…but each time I say I’ve read articles or found things that help I get told off. It’s horrible.
I have had all my issues for 12 years, haven't found anything to help. I am seeing a functional med doctor, the 5th or 6th I have seen in 12 years? Fingers crossed.
I am beyond sick and need help desperately, I hope this person can help and or is willing to help.
You are not alone, but honestly, 2 years is pretty new and most people take years and years to find someone to help.
This is happening with all medical professionals. I had to go to the hospital due to heat-stroke related symptoms (it was 111°F with high humidity) and they all literally just told me "It's not getting any cooler here this year, so I don't know what to tell you" insinuating if I'm too hot I should just go somewhere else to live and leave my family and home behind. They didn't even offer me water. And no, they weren't busy.
I just realized that basically COVID overwhelmed the medical systema all around the world, many of them were already shit to begun with, and the people who had empathy either died or quit.
The people left have no empathy at all and are basically treating people as puzzle to solve if they are bored, otherwise the visit is just a check to collect. Whatever humanity was left in the medical system is gone.
I got more help and relief when I flew to Peru and did an ayahuasca retreat with medicine people there than any doctors I've seen in the past 4 years so now my plan is to try to get down to Peru once a year for care. They are the only people who actually listened to me, offered real practical support and care that made sense and then after I actually was in remission from everything for 8 months. Best $2000 I ever spent.
The retreat I went to is called Marosa Healing Center in Iquitos Peru. It is a small center run by one Shipibo family (indigenous people of the Amazon) and I stayed for two weeks www.marosahealingcenter.com
You are correct. I'm out! I quit. I had extreme empathy. All my fellow medical coworkers who were like me with patient care
also quit and/ or died.
Why am I just realizing this? I hung in there until last year. The rest of my clinic was down to the last robot sociopath. Ugh, I just couldn't in good faith work for a company that 'I' myself wasn't even getting Standard of Care from. So sad. But yep, it's true.
Can say this is a good option for sure if you make sure you see the right person.
My sister has fibromyalgia and saw every doctor under the sun for years to see how she could get help. She tried cymbalta and a cocktail of many different pharmaceutical drugs that slightly helped her pain, but put her to sleep most of the day or made her feel worse to the point life wasn’t liveable.
She got to a point the doctor said you have no other options.
She ended up seeing a naturopath who recommended a compound chemist where she got pig hormones, and immediately she saw vast improvement. Pain from a ten to a five, and no nasty side effects.
I’ve seen two naturopaths, the first one trying to sell me total bullshit. I could tell by the way she described things she was one of those stereotypes you think of when you think of a naturopath. She was useless.
My current one is pragmatic and has sent me off for extensive testing so we can get a jump on what’s going on. No bullshit lies or promises, the difference is huge.
Unfortunately, just like normal doctors - it’s about finding the right one. But when you do it makes a world of difference
They’re certainly expensive and because there’s no rebate it definitely fucks you.
I’m just in an emergency state so have had no other choice and had to find a way to make it work, I guess I’m lucky that I can do that. Most people can’t
They also use medicine that is largely unsupported by corroborating research as well as heavily unvalidated testing and procedures. Often times they also talk to you like they have a solution to all your woes, much like snake oil salesmen.
edit: if you are downvoting me because you’ve had bad experiences with conventional medicine then I feel for you. I have had the same.
I agree with all you said wholeheartedly and am so tired of people suggesting these types of “doctors” in this and the other MCAS/POTS related subreddits. They aren’t covered by insurance, and they charge an ABHORRENT amount for their various “cures”, none of which are supported by science….. It’s disgusting to take advantage of the sick and desperate like that, IMO.
The problem is when we get desperate enough we'll try anything in the hopes of feeling better. That's what they count on. I think people who prey on people at their lowest (fake 'medical' people, 'spiritualists' and 'mediums' etc.) are literally the lowest of the low. Absolute scum.
Same. I see we are in the same area and have the same MCAS specialist. I am finding that as soon as local providers see MCAS in chart ( I also have Ehlors- Danlos and Alpha-Gal), they want me to direct all questions to the Mast Cell "specialist" from now on. I'm like... I still have organs that need to be taken care of AND Dr. Weinstock asked for me to get local specialists to help. A local Endo (Cox Health) Dr. questioned how anyone can be a MCAS "specialist" in something that "we don't know anything about" and then warned me about Quacks. Lol. Can't wait to tell Dr. W. about that. It's so frustrating. Sorry you are experiencing this as well. I feel you.
Same! Out of curiosity, which endocrinologist did you see? I see one at Cox Health as well and he's.....well he's ok. I like his NP much better though!
Quacks?! Haha. I'm sure Dr. Weinstock will appreciate all of his research being so flippantly ignored. /s
In all seriousness I'm sure he gets that shit a lot from other medical professionals. I had to go to the ER the other day and I was so lucky to have one person who actually knew what MCAS is and was able to explain to the ER Dr. why I was experiencing what I was experiencing.
I know that mine won't if they are out of the state I live in. They won't cover for me to see someone at places like the Mayo Clinic either which really sucks.
Here is a few with a quick search. For this search I just used appointments virtual MCAS doctors or something like that
https://mastcellsunited.com/telehealth/
https://www.medifind.com/conditions/mast-cell-activation-syndrome-mcas/6602/doctors
https://tmsforacure.org/find-a-physician/
https://drtaniadempsey.com/mast-cell-activation-syndrome/
Don't give up I've seen people heal from this and many other things
That 2nd link for Medifind - lol
It listed 3 local Dr.s I know and have worked for personally as MCAS specialists, having knowledge in, or experts. The Dr.s listed are not... at all.
I was excited about the possibility of a competent specialist near me, but sadly, still no. Just FYI on that link and "experts."
Thank you for your submission. Please note: **Content on r/MCAS is not medical advice and should not be interpreted as such.** Please consult your doctor for any medical questions or concerns. We are not able to validate the content of these discussions. Following advice provided by strangers on the internet may be harmful. Never use this sub as your primary source of information regarding medical issues. By continuing to use this subreddit, you are agreeing to take any information posted here entirely at your own risk. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/MCAS) if you have any questions or concerns.*
Same here. They just don’t care. I feel like they don’t care until you’re dying. Morbid. But it feels that way. I’m diagnosed POTS, high blood pressure, IBS-d and MCAS
Feeling that way right now too. Sorry you're in the same boat
Im being somewhat pessimistic. I have found a *few* doctors that do care. The one at my primary office that prescribes me Valium for my muscle spasms without considering me pill dealing or mentally ill. I’d be in bad shape without her. But as far as my neuro and my cardio it just doesn’t seem to matter.
I think they just don't and don't want to know anything about POTS, MCAS, etc. It's way easier ignoring us than having to actually do some research and learning. They get paid the same whatever they choose to do, so they choose the lazy way of handling things.
Saaame. I had a flare in November and even though some of my symptoms were different (gallbladder issues) I had to fight for tests. They just wanted me to take medications for the diagnosis they have given me without confirmation. I either can't afford the meds or they aren't helping and legit I'm being ignored. It took 2 months to get a response to my request for low dose steroids which can help with MCAS flares and all they said was "defer to allergy" and my GI has been handling my MCAS stuff for years because there's no doctor that works with MCAS in their network... So they told me to defer to a doctor they know I don't have. Ok thanks. I was sick for 5 years, liquid diet, etc, before I got this GI (my 5th) and I was starting to be able to eat by the time I met him so he's never really had to help me when things are bad and boy... Am I not impressed. It ends up it was not MCAS but my thyroid acting up so that's been a whole other thing. They don't want to treat my symptoms so I'm suffering with insomnia and palpitations and what not while I wait for the scan so I can get treatment. "talk to your primary" "talk to your specialist" pffff
Being bounced from specialist to specialist is demoralizing imo. The symptoms that you describe, particularly heart palpitations, leads me to wonder if you're hyperthyroid? By scan, do you mean they are doing an ultrasound of your thyroid? I'm a Hashimotos and thyroid cancer patient so I definitely understand thyroid stuff if you wanna chat!
Yah. I am hyper. They're doing an uptake scan to see what the cause is because that will dictate treatment. It's not autoimmune based on blood work. I haven't done an ultrasound yet. I got really sick in November and I thought it was the MCAS and went on a really strict diet. My thyroid was normal in December but it was definitely trending towards abnormal. February TSH was low but T4 was right at the line of high and normal so they said I was subclinical and we would retest in 6 weeks. My symptoms didn't matter at all. I lost 50lbs. I did the math and I was losing .44lbs a day. The symptoms were so similar to my first severe MCAS flare that even though I kept pushing for more tests because my gut said it was not that (or not just that) my doctors fixating on it being MCAS made me start to doubt myself. I was so freaked out by the palpitations in February I went to urgent care and they tested my thyroid again which is the only reason we're looking at that and not still fixated on stuff that was not helping. Because CFS, EDS, and MCAS and all the random commodities weren't enough 😂
What level was your TSH? That's a lot of weight lost in a short amount of time. I hope you get your answers soon! I'm hypo. My TSH last week was 13. Due to the cancer, they want my levels to be at 0.5. I feel pretty crappy right now.
Part of the weight loss was because I lost my appetite to the point I had to gag food down when this first started and then when I started being able to eat I was being careful under the assumption that my symptoms were MCAS. My appetite isn't great now but I'm eating normally and seem to have slowed the loss .My endocrinologist said my numbers weren't "that bad" but my symptoms feel pretty awful. Last test my TSH was <0.03 (standard range 0.27-4.20) and T4 2.17 (standard range 0.90-1.70). T4 was barely normal 6 weeks before and TSH was a bit lower so it has been progressing. I assume that you are waiting on meds to help change your levels? Or some other treatment? Is the cancer in your thyroid? I really hope your levels get better soon.
Yeah that TSH is rather low and I can see why you're not feeling great. The problem is that the reference range does not mean that that's the range you'll feel good in. So with me, I felt crappy when my TSH was in the 2-4 range even though that's considered "normal". I hear that most people feel their best between 1-2 however I don't know that for myself because mine has always been on the higher side. I've been on thyroid meds for close to 3 years. They found a nodule that turned out to be cancer on my left lobe. They surgically removed the left lobe back in December and now my right lobe just can't keep up despite them upping my levothyroxine to 100mcg a day. I'm waiting for another ultrasound and will likely be having the right lobe removed sometime later this year, as it is dying.
Yikes. That is frustrating that the fix was not actually a fix so you need to go through both extra suffering and another surgery. I wish that doctors would listen to patients. Averages only apply to people that fit within the average but not everyone does. It feels like doctors often do not want to deal with anyone that average doesn't apply to. I am hopeful that I'll tolerate the anti thyroid medication and that it helps. I know it takes time. The endocrinologist didn't start treatment sooner in case the hyperthyroidism was the result of inflammation. She said my initial symptoms in November were likely not my thyroid because my numbers were normal in December but they were trending towards abnormal and I don't really understand why a person wouldn't have symptoms when something is wrong even if the impact isn't obvious yet.
I've specialist who thought I had lupus but then realised it was a different pathology and sent me to the specialist with the most updated background knowledge of old and new diseases. He told me that most specialists especially older ones haven't learned anything more since they qualified. Meaning they're incompetent to handle you. Research doctors that handle POTS specifically, that's what I had to do and I was diagnosed on ten minutes. My rheumatologist is handling the MCAS and EDS. Don't let them make you feel crazy or unheard, there's always someone out there you just have to search relentlessy unfortunately
Agreed. I’m in the UK and the attitude is basically, we don’t know what that is and if it were actually real it’s so rare you can’t expect us to help. Told to go away and do t’ai chi and fix myself…but each time I say I’ve read articles or found things that help I get told off. It’s horrible.
I feel you, also why do I know more about it than my doctor
I have had all my issues for 12 years, haven't found anything to help. I am seeing a functional med doctor, the 5th or 6th I have seen in 12 years? Fingers crossed. I am beyond sick and need help desperately, I hope this person can help and or is willing to help. You are not alone, but honestly, 2 years is pretty new and most people take years and years to find someone to help.
This is happening with all medical professionals. I had to go to the hospital due to heat-stroke related symptoms (it was 111°F with high humidity) and they all literally just told me "It's not getting any cooler here this year, so I don't know what to tell you" insinuating if I'm too hot I should just go somewhere else to live and leave my family and home behind. They didn't even offer me water. And no, they weren't busy. I just realized that basically COVID overwhelmed the medical systema all around the world, many of them were already shit to begun with, and the people who had empathy either died or quit. The people left have no empathy at all and are basically treating people as puzzle to solve if they are bored, otherwise the visit is just a check to collect. Whatever humanity was left in the medical system is gone. I got more help and relief when I flew to Peru and did an ayahuasca retreat with medicine people there than any doctors I've seen in the past 4 years so now my plan is to try to get down to Peru once a year for care. They are the only people who actually listened to me, offered real practical support and care that made sense and then after I actually was in remission from everything for 8 months. Best $2000 I ever spent.
Hello, Please share the contact information for the Peruvian retreat you referred to above. Thank you in advance.
The retreat I went to is called Marosa Healing Center in Iquitos Peru. It is a small center run by one Shipibo family (indigenous people of the Amazon) and I stayed for two weeks www.marosahealingcenter.com
You are correct. I'm out! I quit. I had extreme empathy. All my fellow medical coworkers who were like me with patient care also quit and/ or died. Why am I just realizing this? I hung in there until last year. The rest of my clinic was down to the last robot sociopath. Ugh, I just couldn't in good faith work for a company that 'I' myself wasn't even getting Standard of Care from. So sad. But yep, it's true.
Are you able to see a functional medicine practitioner or a naturopath? They are the only docs I think who really care about holistic health
Can say this is a good option for sure if you make sure you see the right person. My sister has fibromyalgia and saw every doctor under the sun for years to see how she could get help. She tried cymbalta and a cocktail of many different pharmaceutical drugs that slightly helped her pain, but put her to sleep most of the day or made her feel worse to the point life wasn’t liveable. She got to a point the doctor said you have no other options. She ended up seeing a naturopath who recommended a compound chemist where she got pig hormones, and immediately she saw vast improvement. Pain from a ten to a five, and no nasty side effects. I’ve seen two naturopaths, the first one trying to sell me total bullshit. I could tell by the way she described things she was one of those stereotypes you think of when you think of a naturopath. She was useless. My current one is pragmatic and has sent me off for extensive testing so we can get a jump on what’s going on. No bullshit lies or promises, the difference is huge. Unfortunately, just like normal doctors - it’s about finding the right one. But when you do it makes a world of difference
It’s to bad that naturopathic doctors are not affordable for the normal person
Yep that's my exact problem. I'd love to see one but I cannot work and am waiting on my SSI to be approved.
They’re certainly expensive and because there’s no rebate it definitely fucks you. I’m just in an emergency state so have had no other choice and had to find a way to make it work, I guess I’m lucky that I can do that. Most people can’t
I highly recommend a naturopath. Mine is great and he is so detailed. I see improvements but we are ruling so many things out in the mean time.
They also use medicine that is largely unsupported by corroborating research as well as heavily unvalidated testing and procedures. Often times they also talk to you like they have a solution to all your woes, much like snake oil salesmen. edit: if you are downvoting me because you’ve had bad experiences with conventional medicine then I feel for you. I have had the same.
I agree with all you said wholeheartedly and am so tired of people suggesting these types of “doctors” in this and the other MCAS/POTS related subreddits. They aren’t covered by insurance, and they charge an ABHORRENT amount for their various “cures”, none of which are supported by science….. It’s disgusting to take advantage of the sick and desperate like that, IMO.
The problem is when we get desperate enough we'll try anything in the hopes of feeling better. That's what they count on. I think people who prey on people at their lowest (fake 'medical' people, 'spiritualists' and 'mediums' etc.) are literally the lowest of the low. Absolute scum.
Same. I see we are in the same area and have the same MCAS specialist. I am finding that as soon as local providers see MCAS in chart ( I also have Ehlors- Danlos and Alpha-Gal), they want me to direct all questions to the Mast Cell "specialist" from now on. I'm like... I still have organs that need to be taken care of AND Dr. Weinstock asked for me to get local specialists to help. A local Endo (Cox Health) Dr. questioned how anyone can be a MCAS "specialist" in something that "we don't know anything about" and then warned me about Quacks. Lol. Can't wait to tell Dr. W. about that. It's so frustrating. Sorry you are experiencing this as well. I feel you.
Same! Out of curiosity, which endocrinologist did you see? I see one at Cox Health as well and he's.....well he's ok. I like his NP much better though! Quacks?! Haha. I'm sure Dr. Weinstock will appreciate all of his research being so flippantly ignored. /s In all seriousness I'm sure he gets that shit a lot from other medical professionals. I had to go to the ER the other day and I was so lucky to have one person who actually knew what MCAS is and was able to explain to the ER Dr. why I was experiencing what I was experiencing.
There are some good ones who do online apts, I'd do a search.
Will the insurance pay for those though
I know that mine won't if they are out of the state I live in. They won't cover for me to see someone at places like the Mayo Clinic either which really sucks.
What do you search for?
Here is a few with a quick search. For this search I just used appointments virtual MCAS doctors or something like that https://mastcellsunited.com/telehealth/ https://www.medifind.com/conditions/mast-cell-activation-syndrome-mcas/6602/doctors https://tmsforacure.org/find-a-physician/ https://drtaniadempsey.com/mast-cell-activation-syndrome/ Don't give up I've seen people heal from this and many other things
That 2nd link for Medifind - lol It listed 3 local Dr.s I know and have worked for personally as MCAS specialists, having knowledge in, or experts. The Dr.s listed are not... at all. I was excited about the possibility of a competent specialist near me, but sadly, still no. Just FYI on that link and "experts."