Facial Flushing - is it Rosacea or something else? UPDATE 3/3 - Its Not Rosacea

[KarenStep]

Well I had another doctors appointment yesterday and they found a tumor on one of my ovaries. So I am going to have surgery next week to have it removed, and this is probably where my episodes of flushing are stemming from. Right now we don't know if the tumor is cancerous, they are calling it a dermoid tumor which is a pretty common type of ovarian tumor. My tumor is apparently pretty decent size - about 7cm, the good ovary was measuring 2.5 cm. My doctor said I'm the 4th patient in a month that he's seen with a dermoid, so it is pretty common, although he said mine is larger than what he usually sees.

I am definitely very worried though, dermoid tumors can sometimes cause a carcinoid tumor (cancerous type) to grow within it and facial flushing is a symptom of a carcinoid tumor (the flushing is actually a symptom of carcinoid syndrome, when the cancer has spread to the liver causing excess seratonin to be produced by the liver)...it's very rare but possible.

So, next week they will remove it and biopsy it and we'll know for sure.

Does anyone have experience with dermoid tumors or carcinoid tumors?

Thanks always.
Karen

[shaeharbin]

Originally Posted by KarenStep Well I had another doctors appointment yesterday and they found a tumor on one of my ovaries. So I am going to have surgery next week to have it removed, and this is probably where my episodes of flushing are stemming from. Right now we don't know if the tumor is cancerous, they are calling it a dermoid tumor which is a pretty common type of ovarian tumor. My tumor is apparently pretty decent size - about 7cm, the good ovary was measuring 2.5 cm. My doctor said I'm the 4th patient in a month that he's seen with a dermoid, so it is pretty common, although he said mine is larger than what he usually sees. I am definitely very worried though, dermoid tumors can sometimes cause a carcinoid tumor (cancerous type) to grow within it and facial flushing is a symptom of a carcinoid tumor (the flushing is actually a symptom of carcinoid syndrome, when the cancer has spread to the liver causing excess seratonin to be produced by the liver)...it's very rare but possible. So, next week they will remove it and biopsy it and we'll know for sure. Does anyone have experience with dermoid tumors or carcinoid tumors? Thanks always. Karen

So sorry, I will be praying for you. I have had episodes like you for about as long as I remember. In fact, as I sit here right now my cheeks are burning. I get very flushed and my cheeks get very red and hot and sometimes my ears get red and hot and sometimes I get splotches of redness on my neck. It happens when I'm hot, embarrassed, or for no reason at all. I've never really thought to ask the doctor about it but b/c your situation I believe I will make an appt. I will be keeping you in my thoughts, good luck.

[meems]

Karen, you will be in my thoughts too..please keep us posted, k?

[KarenStep]

Originally Posted by meems Karen, you will be in my thoughts too..please keep us posted, k?

Originally Posted by shaeharbin So sorry, I will be praying for you. I have had episodes like you for about as long as I remember. In fact, as I sit here right now my cheeks are burning. I get very flushed and my cheeks get very red and hot and sometimes my ears get red and hot and sometimes I get splotches of redness on my neck. It happens when I'm hot, embarrassed, or for no reason at all. I've never really thought to ask the doctor about it but b/c your situation I believe I will make an appt. I will be keeping you in my thoughts, good luck.

Thank you both so much, I certailnly will post an update once I know more.

Shaeharbin - you should get it checked out - at least mention it to a doctor. Don't alarm yourself though - it may be something completely different from what's happening to me. From what I've read many people go undiagonsed because it is quite rare and they just live with the flushing. Most people find out they have it by accident, when looking for something else, or when it's progessed and they have other symptoms. I was lucky to have a OB who was willing to dig a little bit. I honestly thought I would be told that it was pre-menopause and to go home and live with it.

I waited over a year to see someone and now I am kind of kicking myself but I'm glad I went in now and was able to get it figured out...a first step at least. (If the tumor would come back carcinoid they would have to look to see if it has moved elsewhere, particularly the liver). I'm glad I didn't wait and avoid the situation any longer, hopefully we caught it early enough and it will be just a dermoid tumor. I generally still get the flushing when I'm hot or cold, most often when I'm just sitting doing nothing. The last 2 days I've had it a little more constant, due to stress, but I'd get it a little when I'd be frustrated or stressed before, so it's not unusual.

All I can do now is try to stay positive and hope for the best. Thanks so much for your support!
Karen

[nikki5]

Hi there- I have been a long time lurker and came across this post. It was kinda creepy how similar my symptoms are to yours. My flushing started with showers too, now not so much.

How did your surgery go? And if you don't mind my asking, how did they find out about the tumor? I am in the process of finding out what my flushing is being caused by as well. Has been happening 4-5 months. My PCP thought nerve problem, my derm thinks it could be mild rosacea but since it started so suddenly he recommended me to go to my OBGYN for further tests. So frustating!

Anyways - I hope all is well and thanks for posting your experience, you are not alone!

[KarenStep]

Originally Posted by nikki5 Hi there- I have been a long time lurker and came across this post. It was kinda creepy how similar my symptoms are to yours. My flushing started with showers too, now not so much. How did your surgery go? And if you don't mind my asking, how did they find out about the tumor? I am in the process of finding out what my flushing is being caused by as well. Has been happening 4-5 months. My PCP thought nerve problem, my derm thinks it could be mild rosacea but since it started so suddenly he recommended me to go to my OBGYN for further tests. So frustating! Anyways - I hope all is well and thanks for posting your experience, you are not alone!

Hi - sorry it took me so long to get back to you - kinda forgot about the thread!

Well, since my surgery I've still been having flushing episodes, I am beginning to think it may be more rosecea-related than the doctors think, I am considering an appt at a dermatologist. It has been so wierd and hard to figure out - in some ways it does seem cyclical - like it is coordinated with time of the month - other times not so much.

My ob said to give it 2 months to get my cycles back to normal (they did a d&c for a polyp at the same time as the surgery) and so with the first cycle, I had increased flushing for the week and then week after my period, the last 2 weeks I've had very little. Now with it starting again, I've been a little red these last 2 days...not horrible, bur definitely there and getting wose a little each day - I feel the heat the cheeks are a bit red.

To answer your questions, the surgery was pretty good - tiny incision and not a lot of pain at the incision at all - they went through the bellybutton, it was small. The only pain I had was back and shoulder pain from the gas they use they puff you up with - that was a lot worse than I expected. Since the surgery I've felt fine, took 4-5 days to get back up and move around easily, but really not bad at all.

They found the tumor by just doing an ultrasound. When I first met with this ob (he's new for me, we have new insirance) so I kind of went over my history with him - I had 2 pre-term pregnancies, I was severely sick for both pregnancies, severe hot flahes when trying to breasfeed - I just mentioned that I felt like my hormones were out of wack in some way. He ordered an ultrasound of the ovaries and that is how they found it. But, now...I'm still not sure that that is what is causing the flushing (flushing started 3 years after the pregnancy issues). I also found on a menopause forum many women talking about having this cold body/hot face thing related to that - having flahes like this but they're not necessarily "hot" themselves...so could it be low hormones or something..I don't know.

Oh - I should mention that the tumor did come back benign - not cancerous so the flushing was not due to the carcinoid syndrome...which is a VERY good thing.

So I'm giving it another couple weeks - OB said to call if after 2 months I'm still having the flushing. My next step will be to see a derm.

Please do let me know what you find out, I'm so anxious to hear if anyone else is having this and what it could be from.
Thanks!!!
Karen

[nikki5]

Hi! Thanks for responding!! It is so frustrating! Especially feels like a needle in a haystack.

I did end up getting a bunch of blood work done at my OB. She tested for everything, thyroid, lupus, hormones. Turns out I have a severe vitamin D deficiency. I have to take some hard-core prescription strength vitamin d for a few months until my levels go back up to normal levels. I was shocked to learn that vitamin D can cause hot flashes, or make hot flashes worse. I would def get that checked out if you are still getting those flushes. I noticed a change immediately in my skin, very weird. She said vitamin d problems are so common now with women because they tell you to avoid sun like the plague and food does not give you enough to keep you at a normal level.

I will say my flushes have stopped. I still feel heat in my cheeks sometimes but it seems to be when I am due to take my weekly dose of vitamin D. I go back in 2 months for more bloodwork so if my levels are normal I will probably have to take a lot of vitamin D via supplements to stay normal, if they are still bad, then more tests...fun fun!

So are you continuing to stay red after a flushing episode? This was what the derm said is the key with rosacea that at first the flushing comes and goes, and then it becomes permanent redness. Mine always went away and I never flushed before in my life. No breakouts either, just red in the cheeks.

Sounds like the procedure was not that bad and great news it was benign!! Keep us posted and I will do the same. Hopefully we can figure out for sure what is going on!!

Nikki

[meems]

And yet another symptom from vitamin D deficiency..wow....the list gets longer every day.

Do you get in the sun at all? You cannot beat natural sunlight to give you the right amt of D...remember sunscreen blocks D absorption.

Just to touch base..they were ready to write me off as fibromyalgia..but I kept digging & eventually found the D issue, it is INCREDIBLE how much is affected by D!

Originally Posted by nikki5 Hi! Thanks for responding!! It is so frustrating! Especially feels like a needle in a haystack. I did end up getting a bunch of blood work done at my OB. She tested for everything, thyroid, lupus, hormones. Turns out I have a severe vitamin D deficiency. I have to take some hard-core prescription strength vitamin d for a few months until my levels go back up to normal levels. I was shocked to learn that vitamin D can cause hot flashes, or make hot flashes worse. I would def get that checked out if you are still getting those flushes. I noticed a change immediately in my skin, very weird. She said vitamin d problems are so common now with women because they tell you to avoid sun like the plague and food does not give you enough to keep you at a normal level. I will say my flushes have stopped. I still feel heat in my cheeks sometimes but it seems to be when I am due to take my weekly dose of vitamin D. I go back in 2 months for more bloodwork so if my levels are normal I will probably have to take a lot of vitamin D via supplements to stay normal, if they are still bad, then more tests...fun fun! So are you continuing to stay red after a flushing episode? This was what the derm said is the key with rosacea that at first the flushing comes and goes, and then it becomes permanent redness. Mine always went away and I never flushed before in my life. No breakouts either, just red in the cheeks. Sounds like the procedure was not that bad and great news it was benign!! Keep us posted and I will do the same. Hopefully we can figure out for sure what is going on!! Nikki

[nikki5]

Hi there-
Yes I am outside at some point every day hauling kids around etc. And we have a pool so basically starting now, I am outside all the time. The hot flashes started in the winter so I am assuming they just got really low since I was never outside. I am not the best eater either, and I hate milk so I was not getting any D. Also terrible about taking my multi-vitamin. Lots of stuff I need to work on there

But you bring up a good point, every time we go out in the sun most of us have sunblock on. Its in our lotion, makeup, everything! The dr said we need 15 minutes of UN-EXPOSED sunlight for your body to absorb the right amount of D.

It is amazing how much D can mess you up. I did some research when they found out about it and it is amazing. Joint pain, all over pain, achiness, being tired all the time, memory, the list goes on and on.

[KarenStep]

Originally Posted by nikki5 Hi there- Yes I am outside at some point every day hauling kids around etc. And we have a pool so basically starting now, I am outside all the time. The hot flashes started in the winter so I am assuming they just got really low since I was never outside. I am not the best eater either, and I hate milk so I was not getting any D. Also terrible about taking my multi-vitamin. Lots of stuff I need to work on there But you bring up a good point, every time we go out in the sun most of us have sunblock on. Its in our lotion, makeup, everything! The dr said we need 15 minutes of UN-EXPOSED sunlight for your body to absorb the right amount of D. It is amazing how much D can mess you up. I did some research when they found out about it and it is amazing. Joint pain, all over pain, achiness, being tired all the time, memory, the list goes on and on.

Hi Nikki-

Wow - vitamin D, huh? Very Interesting. Thanks so much for posting back and letting us know, I appreciate it. I will definitely see about getting that checked out by my doc.

I'm glad you are seeing improvement in your skin!

Mine also started in winter but I did have it through summer last year - any time I would get too hot I would get flushed very quickly - like within a couple of seconds of getting into a hot car I would feel it coming on. I also used to take a multi vitamin but haven't for a long time now...well over a year.

I have a couple new theories I want to talk to my doctor about now - one of them being the Vitamin D, but the other I keep going back to is thyroid...I want him to retest my TSH. The type of tumor I had is known to produce thyroid hormones, it has been documented that they can mimic a thyroid disorder by releasing the hormones directly into the bloodstream, and make your levels appear high. Now my TSH came back normal but I still wonder that if I am possibly hypothyroid (producing low thyroid - both my mom and grandma had thyroid disorders) and my levels just looked normal due to the tumor also producing thryoid. I know its a long shot but I still think about it....and I'm still COLD all of the time...it's over 70 degrees here and I walk around freezing all the time! I have read online about people being hypothyroid and having flushing episodes. I just don't know...my flushing is always temperature related...I feel like I'm walking a tightrope everyday - as long as I stay right in the middle I'm fine, if I get the slightest bit warm or cool, then I'm in trouble.

This week has actually been okay - 2 or 3 times I had it a little but it went away pretty quickly. I guess I just need to call the doc again and get back in, maybe they can do some more bloodwork and see where the Vitamin D and the TSH are at.

Keep us posted on how you're doing and if you have anymore flushing episodes!
Thanks,
Karen