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bizarre disappearence of my rosacea..medical mystery indeed.

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  • y-gwair
    replied
    I had a milder bout of my current skin problem (itching, burning swelling around eyes, extreme dryness, inability to sweat) 15 years ago that went into spontaneous remission almost overnight, then had the opposite problem of feeling hot, flushed, sweaty, hyper. A couple of years later I finally got a diagnosis of hypothyroid disease.

    I think both forms of autoimmune thyroid disease can cause symptoms that overlap with rosacea. I think the causes are probably complex - autoimmune diseases can damage nerves, in the skin this can affect sweat glands, blood vessels causing extreme dryness and sensitivity. There is an association between hypothyroidism and inflammatory skin conditions like idiopathic urticaria and angioedema, but one which isn't well understood. In Graves (hyperthyroidism) abnormally elevated metabolism will affect blood flow and sensitivity of the nervous system directly, which is why treatment might result in such quick remission.

    Even though my thyroid disease has been treated for 10 years now, it has made little difference to dryness issues (skin, eyes or mouth). I am currently having a terrible flare of rosacea-like flushing symptoms. My thyroid antibodies are currently negative, but I do have other inflammatory markers (raised IgG, Hypergammaglobulinemia) and a recent dx of another AI condition, UCTD which shares some common symptoms with lupus (including photosensitivity, which again overlaps with rosacea).

    My point is that autoimmune conditions including thyroid disease can cause inflammatory skin symptoms that are very similar to rosacea, but may not respond to the usual rosacea treatments. I live in hope it will eventually remit, as it did before, but I'm not holding my breath.
    Last edited by y-gwair; 18 June 2011, 09:55 PM.

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  • amethystice215
    replied
    I know this thread is really old but was curious if the original author is still around and how much "tadpoles" :0) per day she was taking? I just got my test results back and although they are in the "normal" level they are pretty low, I eat and eat and eat and cannot gain weight, and NOW for the past few months i have developed rosacea.. and yes after a stressfull year, my childs father left us and now I am a single mom of 5 children, let me tell ya it has been one hell of a year, in fact it is one year tonight.. imagiine that, hopefully I can get rid of this horrible "disease" and get back to normal, it would be awesome if I could say I found my cure exactly one year after all this stress began and I could live a normal life again.

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  • hjrogers
    replied
    Graves Disease & Rosacea

    I decided to google 'Graves Disease' and 'Rosacea' and I am absolutely amazed to find your post.. A BIG THANK YOU!! I also went through a life changing event that caused depression and anxiety, which I was never treated for but I was treated for Rosacea. The treatment was an antibiotic and it didn't work after months so I gave up. Yesterday I was diagnosed with 'Graves Disease'. I have an ultrasound booked in 6 weeks and then I will be referred to a specialist. It will interesting to see what happens to my skin once I am medicated for this condition. Let's keep in touch, because this could make medical history!!!!!!!!!!!!!!!

    Hayley

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  • hjrogers
    replied
    Originally posted by Ladonna View Post
    i...something recently happened that would probably be of interest to all people here...not to mention the medical community.

    First let me say that I am very familiar with this forum, and with rosacea...as I have had it for a while, but I have never posted here before. I have read hundreds of posts here but I am mostly the walflower type even when it comes to online forums and I felt no need to add anything. until now.

    I will tell a brief skin and life event history for you, first. I am fair, female 27 years old. European descent. I had acne really terribly and suddenly for about 5 months when I was experiencing puberty. My mom took me to the dermatologist immediately. The acne was a mix of mild whiteheads and blackheads to the really painful cysts. It was probably hormonal. The derm first put me on a round of antibiotics, some topical, some oral. No avail. He also tried retinin A which made my skin crack...probably from over application. Finally I broke down and cried in his office and my mom demanded Accutane. The accutane did it. The ance was gone in half the time the derm predicted. No scarring. No reoccurance, except the stray zit around the same time every month...

    Graduated HS with beautiful skin. Went to college, skin was perfect.

    Graduated college and fell for a man who was...well..bad for my health.

    He was very stressful. And very hard to get away from. Spent some years getting stressed out. Even after I had finally got away he stalked me for another 2 years. He stalked me at my work, he stalked me while I was on dates. I ended up getting married to my wonderful husband and he then started stalking us both. He stalked my friends. He stalked my mother also, and would drive to her work, to see if I was there having lunch with her when he could not locate me. Finally after many orders of protection and violations, he was jailed then later sent to an asylum. It got very serious.

    He was the reason my husband and I have moved out of state.

    But through out this dark time, I noticed that things were changing about me. I had a rapid, unsteady heart beat. Sometimes it would beat out of my chest. Some times it would skip a beat. And for no reason at all. I could be laying in a hammock thinking of nothing and I would get a rapid heartbeat, as if I was running on a treadmill or running for my life. I attributed this to the years I was stalked and stressed by this man.

    I was also an insomniac. I thought this also had to do with him and the fact that he broke into my house at night several times, and I thought I was just scared to sleep..especially at night.

    I also had trouble getting a deep breath, I felt hot all the time and flushed and I was way too skinny for my own good. And I am someone who has never avoided butter. I have never been on a diet. Yet I was a good 30lbs underweight. and I eat like a man. I aslo thought this was due to stress.

    I also had ROSACEA. Well I dont know now what it is, but my husband took me to the dermatologist and she said it was Rosacea and couldnt be anything but. She of course prescribed Metrogel. I tried the sample packs she gave me but never filled the script , cause it made my skin burn and it make me flush...so how could it do any good?? For me, at least, I recognize that others have had success with it (and I have a pretty good idea why)

    anyway, my husband got worried about me because he would listen to my heart and indeed it was going crazy. So he took me to many doctors, and finally a wonderful doctor took a shot in the dark blood test and discovered my problem. Later more involved tests and scans confirmed it. I was Hyperthyroid...specifically Graves Disease. Or a name I feel fit it best.... I had DIFFUSE TOXIC GOITER...

    not going to get into the diffuse and the goiter part, because this is a skin forum...but the toxic part describes the patients hot, flushed, fevered, swollen appearance....sound familiar??? You can even have hives ...as I did. I had hives/bumps all over my chest and my face. When we moved out of state was the worst because we were so stressed out ....and there was more red bumps on me than white skin...the red bumps even fused in places and formed plaques....that should also sound familiar to some....

    The hives took a month to go back to their previous state which was just about 20 red and sometimes white headed pustules dispersed across my cheeks mostly....I took bennadryl upon my husbands suggestion that maybe it was not really Rosacea but an allergy...but the bennadryl did not help so very much because ..my allergy was to myself. When you have Graves Disease...your antibodies attack your thyroid..

    So after I was diagnosed I felt some relief..mostly because I had tests on my heart and i did not have a heart problem. It was the thyroxine levels put out by my aggrivated thyroid that were stimulating my heart to beat its self..litterally to death. and yes, you can die from what is called a Thyroid Storm. you can eventually have a heart attack or a coma if you live your life with this untreated.


    Anyway...now. I was given my first anti thyroid meds ...exactly 3 weeks ago. Now we get to the relevant part. After taking my Tapazole for 3 or 4 days, I dont know exactly how long, but it was less than a week. I woke up next to my husband and he smiled and said..."what happened to your skin!!!! Its BEAUTIFUL!!!


    I wanted to slap him because I thought he was making some kind of cruel joke. But I ran to the mirror anyways. My skin was indeed perfect!!!!!!!!!!!!!!!!Please dont take me as a vain girl...but I had spent the last 4 years cringing at the mirror. and I never thought I would have a semi normal skin day ...let alone a perfect skin day.


    I did not want to jinx it though. So I made no big deal out of it...as much as possible. And of course I kept taking my tapazole pills which I lovingly nicknamed my Tadpoles

    The redness was gone, the flush was not coming and going, the skin seemed a different texture, some how dryer and flatter. My skin became more and more opaque ....I think is the right word. No pustuals or bumps or zits or hives or what ever you want to call them...and I was flabbergasted at how there just were no more visible red lines...I thought they were a permanent fixture but I think I was sold a lie by cosmetic companies, cause there must have been a REASON they were there and now that the reason was gone, my skin must have reabsorbed them or maybe the blood went out of them...I will never know. Its like my face had been full of blood or plasma or antibodies some kind of fluid between the cells and now my skin was more compressed...like normal skin!!!! It felt thicker like it could be pinched with out pain ...like the layers had been floating and thinned out by veins and liquid and now it was structured...I dont know if this makes sense to anyone. My skin had been hottish as compared to say the skin on my arm which was not inflamed and now it was cooler and flatter.

    The results happened so very rapidly that I had that euphoria that I think people must get when they are miraculously healed. I honestly felt miraculously healed!!

    Time went by and I decided that since the results seemed permanent I should probably post this on here, because no doubt there is some one else out there who has what seems to be Graves induced rosacea and is at home right now applying useless creams.

    Its been only 3 weeks..but the result was so sudden and so consistant that I have to attribute it to the tapazole.....which not to mention has calmed my heart down and has helped me sleep at night. I was not taking anything else, and I had no diet change. I wash my face with plain Dove soap which I have used all my life.

    First of all I want to let everyone know that while my symptoms which I mentioned are pretty typical for Graves....there are plently of common symptoms which I dont have at all. Eyeball protrusion and eye redness and eye dryness and scratchiness is the most common symptom, and I dont have any protrusion at all!!! And Graves symptoms skip around like this, different patients ...different collection of symptoms. Graves is essentially an autoimmune disease where the antibodies attack. AREAS that are affected by Graves can be, but not necessarily, and are not limited to, the thyroid, the heart, the skin, the eyes, the shins and tops of the feet....some areas affected, then inturn affect other things, like a rapid heart beat inturrupts sleep and causes insomnia, panic and anxiety. Graves is often misdiagnosed by psychologists as a panic disorder. Some doctors think Graves is caused by stress or a predisposition to Graves and is activated by stress. I think this is what happened to me. They dont understand Graves entirely..but they do know how to treat it successfully and that all that really matters to me!!!

    I dont know if this is of any use to anybody, but I feel it needs to be said. After discovering the cause of all these problems including the Rosacea was the Graves, I started thinking about Rosacea.

    In my humble, non medical opinion....I dont think that Rosacea is "one" thing...

    a better way to say it would be...that I dont think Rosacea is an actual disease or diagnosis...but rather a symptom.

    I think that Rosacea can easily be a symptom to other diseases or conditions besides Graves...what about Lupus. It causes a Rosacea like flush...and I think there are hundreds of diseases out there discovered and undiscovered that cause the face to flush and get pustules or hives and eventually veins as it did in my case. I think that Rosacea is a warning sign that something is seriously wrong in the body...but I dont think that Rosacea is in and of itself an isolated disease not associated with something more severe.

    Maybe for some people it is skin mite allergy ...maybe for some it is vascular weakness...for me it was definitely Graves.

    This is why I think Metro Gel works for some and not others.

    I almost think it depends whose office you walk into, because I saw 4 different doctors before one figured it out.

    A dermatologist saw my face (with out makeup of course) and diagnosed me with Rosacea she offered to laser me and gave me Metrogel samples...

    A general practitioner who I obviously dont see anymore, said that I had anxiety or possibly PTSD and prescribed Xanax, and suggested that I see a psychologist. I did not fill the xanax nor did I see the shrink, nor did I ever walk through his office door again.

    Then my wonderful doctor who spent 15 minutes on the phone with my mom getting my really really extended family history, discovered that hyperthyroidism occured 2 generations back ...and tested me for it.


    If anyone is wondering...the test for hyperthyroidism is a simple TSH test or thyroid stimulating hormone test. Low results mean you are hyperthyroid...high results mean you are hypothyroid...which is the opposite condition, I wont get into it...false negatives or false positives can happen with this test...and they will probably test you twice just to make sure..and you will have to fast.

    If they discover you are hyper then they will do more tests to find out HOW hyper and WHY...Graves disease is just one of many kinds of hyperthyroidism.

    Anyway, this post has become ridiculously long....so I will stop now but as you can tell I am really excited about this, and I hope at least one person out there will find this information useful.

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  • snuffleupagus
    replied
    Got my thyroid blood test done yesterday. I am always overheating now it seems. My nose flushes within a second, it's nuts. Everyone else is fine with the temp. Sad but kinda hoping i have this problem so at least i know the cause of my rosacea. We'll see what happens next week!

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  • rosabolic
    replied
    hey

    post accutane i developed a reddish rash on my cheeks.
    ive been to 4 derms.
    2 say its rosacea, 2 say its kprf. It is actually a confusing case...

    ive been suffering with this for 2 years, and my derm that is doing the lasers decided to do a blood test on me.

    The nurse called me the next day that i should come back for another blood test because my thyroid and plaquetes came up low. So i went back for another test.
    This second one came low too. So i was sent to an ematologist, i think it was.

    He was suprised to see someone my age (20), be at this kind of Dr, and told me i had my plaquetes too low. Mine was at 120,000. The average is 300,000. And Leukemia and aids is 30,000.
    So im in between.
    He told me to repeat the tests in 2 weeks, before he does the scans on me which are very expensive, although i have medical insurance.
    Ill keep you guys posted in my forum of "help me diagnose, and in this one"

    I believe everyone in this forum has a cure. And going to dermatologists is not the cure. Dermatology is an Art, were you look for 10 seconds and you diagnose. There is something wrong with your body that is causing the skin problem
    You are what you eat.

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  • valby
    replied
    Funny thing is my skin was the best it has ever been when I was hyper thyroid. I have now had my thyroid out and my rosacea has gone into full gear since taking thyroxine

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  • roz
    replied
    It's great to hear that diagnosed and treated hyperthyroidism has alleviated rosacea for you.
    Yes, research should be done with the thyroid and rosacea.
    I believe that my rosacea is connected in some way to my hashimoto's thyroiditis an autoimmune condition that results in hypothyroidism due to antibody destruction of the thyroid.
    Diagnosis and treatment of hypothryoid has not however alleviated my rosacea symptoms.

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  • notred
    replied
    My rosacea disappeared too

    Like the poster, I was diagnosed last year with hyperthyroidism. Put on methimazole, the generic version of tapazole.
    Within a six weeks as my TSH level normalized, my long-term annoying rosacea also disappeared.
    Not sure why, but both these are basically autoimmune diseases and probably co-exist. It would make an interesting scientific study to test the relationship between these two.

    it's obvious that most cases of rosacea are not caused by hyperthyroidism because only about 2-3% of the population ever becomes hyperthyroid. but for a subset of rosacea sufferers, it must be related.

    PS: the other thing that helped my rosacea even before this happened was a regimen of Lumene Blue Sensitive day and night cream. (from CVS.) That combined with 1 250mg tetracycline a day kept my skin fairly good. but controlling my hyperthyroidism worked far better and i no longer need tetracycline.

    all the best to everyone.

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  • Ladonna
    replied
    pain, swelling or pressure in the neck........

    Hi Bruno!

    I also sent you a private message, but I wanted to answer this for anyone else wondering.


    As you know the thyroid is located in the neck, below the voicebox I believe .... and some times when people have hyperthyroidism or other thyroid problems they have a swelling or a pain or a pressure in the neck...that is usually because a goiter is starting. Some people dont notice anything at all... some people only notice a tightness when they swallow.

    You may have a goiter, which is not visible to the eye because it is going down into the neck tissue instead of protruding outward. Mine was enlarged almost twice its size ..yet no one noticed anything!!! and my neck is quite slender, but the goiter did not visibly protrude!!



    Pain in the neck area, blushing and sweating excessively are top symptoms of hyperthyroidism!!! But there are other disorders of the thyroid that it could be. The only way to find out is to see a good endocrinologist!!!


    Dont rely only on the TSH test done by your general doctor, as these can sometimes show false negatives.

    Go to an endocrinologist, ASAP!!! It may take some time and more tests until the problem is discovered and the sooner you start the better!!!


    Wishing you and everyone on this forum all the best.

    Ladonna

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  • BrunoP
    replied
    hi Ladonna.. how ´r you.. i saw your post today and i´m so happy that your feeling good... i agree with you when you said many people have rosacea cause they probably have other desease that provoce rosacea.. something like that (i´m portuguese.. sorry about my english). i bealive that too cause before i didn´t have rosacea or any simptoms of rosacea. and for 3 years i was diagnosed with rosacea... i don´t know what happened...most people don´t know why they become to have rosacea...i only can remenber one think about that time when i was diagnosed.. i have other problem too..well i did a small text to put in the forum but i´ll
    put first on this reply post.

    "The only thing that i know, is that my rosacea became worse because i´ve vocal fold problems too cause i was a singer in a small group. My trachea hurts when i talk too much and i noticed that rosacea became worse... when i don´t use my voice....i feel relief on my trachea, my neck..and i feel relief on rosacea too...i don´t know if anyone have this problem too...or this neck and rosacea problem is just a coincidence. i don´t know... but i think that can be something, cause both problems started at the same year..."

    i did a blood test for hypertiroidism and it was normal...no hormonal problems...but i only did one.. and its a simple test. should i make more tests?? its not normal that i have so much pain in my neck.. and if isn´t thyroid problems, must be something else..the larynx hurts me a lot...the doctors don´t say nothing about that, only said not to talk to much... but nothing works, and i can´t find the right doctor.

    other thing, i saw that hyperthyroid symptoms can be blushing and extreme sweat...i had those 2... the extreme sweat i treated with simpatectomy cirgury but i still blush very much from the hot weather, and other rosacea triggers too... what do you think Ladonna.? best regards

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  • Ladonna
    replied
    symptoms of a. f.

    ..and this is another article about Graves...he discusses the fact that both weight loss (usual) and weight gain (unusual) can accompany Graves.

    he also discusses facts and theories about thyroid problems in detail

    http://webhome.idirect.com/~wolfnowl/thyroid2.htm

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  • Ladonna
    replied
    more about adrenal fatigue

    an article about adrenal fatigue...


    http://www.project-aware.org/Resourc...lfatigue.shtml

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  • Ladonna
    replied
    Jenn the symptoms I mentioned...and in the article are simply possible symptoms... Graves disease, though highly treatable, is not entirely understood. Infact from what i have read there are differences of opinion on how Grave's disease is caused and exactly WHAT are"typical"symptoms

    The fact that you dont loose weight is in no way an indication that you DONT have it...you may very well have it...or something else entirely.

    There are also other thyroid disorders that include the symptoms you mentioned AND include weight gain...one is called : Hypothyroidism with Adrenal Fatigue, i have not read enough about this to really speak about it, as this is not the disorder I have been diagnosed with but from what i understand it mimics the "stressed out and flushed" symptoms of hyper and it has lethargy as another symptom, and because it is hypo it causes weight gain. It has the added involvement of the adrenal gland/system, ...but I dont know the details...I dont know much more. I do know that there are lots and lots of thyroid disorders out there and they are hard to pinpoint...but fortunately they mostly are easy to treat, THANK GOD!

    If you want to know more about the differences between hyperthyroidism, and hypothyroidism and the causes and symptoms of both and other thyroid disorders there is a really helpful website out there..it is a support forum ...very much like this one...and just reading it helped me.

    There are alot of people on there though ...you will find who are very very frustrated because thyroid issues are frustrating and not everyone who takes their thyroid meds, has as happy results as I have...though I would say that for the most part the drugs DO work..I am living proof of that....so have faith

    anyway the website is www.stopthethyroidmadness.com

    but I highly suggest...highly....that you find a GOOD endocrinologist.

    or maybe even 2...second opinions are always a good idea.

    and do you see a neurologist about all the twitches, tremors and crawling sensations ? or is this the regular doctor who gave you this diagnosis???

    In my humble non medical opinion...your symptoms are a bit beyond the scope of a general practitioner...no offense to your doctor intended.

    also describe specifically the problem with your nails??? Nails going awry is a symptom for many diseases and usually the details of how the nail is malfunctioning is very particular to specific diseases.

    Nail problems are very common symptoms for Graves, but how do yours look, what is the texture, color, dry or cracked??? slow growing? thin or thick?? discolored? are they concave or convexed????have they come off?? do they bleed easily?? is there any numbness or tingling?? what is the specific problem?

    I am here to tell you that they dont know everything....

    Besides all the usual symptoms of Graves that I DID have there was the most common symptom, which I did not have...no eye involvement what so ever!! Despite my rosacea, my eyes had remained particularly clear and there was no protrusion. I even went to the eye doctor after my diagnosis and asked him if there was anything wrong with my eyes...any thing undetectable perhaps and nope, no swelling no redness, no fluid, no protrusion no dryness.....


    and besides all the usual symptoms...I also had one symptom that was not even in the medical books and my doctor had only encountered one other patient with this symptom...horrible tongue sores, embarrassing and painful. ...like hives on the tongue...and these went away BEFORE the rosacea ....i think I took the second dose on the first day and they went down. they responded FIRST....last to respond....was my insomnia... ](*,)

    it makes sense actually if I think about because the tongue is kind of membranous and full of vessels and easily affected, and the insomnia is more like my brains bad habit reinforced by bodies bad habit. so even if my paltipations are gone my brain is still going to expect them and after 4 years of stress and 2 years of insomnia ...well ...old habits die hard.

    plus I had been taking sleeping pills and had to kick that habit.

    but my point is that you wont find tongue hives on any website about graves..and Im sure i will never meet anyone who has dealt with this before.....but its a real , albeit rare, symptom....and it responds very well to the drug.

    based on the symptoms you have described...though, I think there is enough here to say that at least a Graves disease rule out is in order and you really do need to see an endo because there are so many dysfunctions of the thyroid and he can see if your symptoms match to anything else....the other reason to see the endo is that they handle problems with the hormones, the pituitary, adrenal glands, lymph nodes and stuff like that so they do alot and if nothing else he can rule out these areas...if not get to the bottom of everything....

    My girlfriend a few years back had really bad acne, and suffered for such a long long time...then she started growing a beard... poor thing. a beard not a mustache....that she could not put up with so much, she went to an endo and the endo immediately tested her for testosterone and androgen and sure enough her body was making too much manly stuff for one little 5'4 body to handle. why? who knows? even the endo did not know why...but he knew what to do...he immediately wrote her a prescription for (i think it was androgen or testosterone blockers) meds and in two weeks not only was she beardless she was acne free, and flawless...point is...why put it off and suffer? I dont know why she suffered with the acne and waited until she got to the point where there was so much testosterone build up that she grew a beard.....and I dont know why I let myself suffer for so many years with a red face and insomnia and had to wait until I thought I was having a heart attack (thyroid storm)...........to actually pursue a solution....bleh.

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  • jennfran
    replied
    I also have hives, have for years. I also have dry, red, itchy eyes, bleperitis, and my nails are all messed up. I also have internal and external tremors along with twitches all over my body, ant crawling sensations on upperbody they say this is all from my benign nerve disorder. I have never seen an endo and only tested for TSH by regular MD. I have an appt. with my Dr. Nov. 2nd and I am going to ask to go see an endo, I have been wanting to for awhile now. Thanks so muc for all of your info, if you have any other info for me you can post it or pm me. I will let you know what comes of this for me also. The ony thing is that I dont lose weight, I have gained alot of weight...hmmmm, what do you think? Thanks...Jenn

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