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bizarre disappearence of my rosacea..medical mystery indeed.

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  • bizarre disappearence of my rosacea..medical mystery indeed.

    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 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 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 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 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. 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 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 normal skin!!!! It felt thicker like it could be pinched with out pain 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 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.

  • #2
    Wow Ladonna I'm very pleased for you. You post may be but it is also very informative.

    Many thanks



    • #3
      WOW again. I have some other health issues and they thought that I had a thyroid problem but I have had three TSH tests done and nothing shows. I have even tested myself the old fashion way and that is taking your temp every morning before you get out of bed. The only thing I know is that I have a low temp most of the time. Usually 97.9. I also have twitches all over my body but that was dx as Peripheral nerve hyperexcitiabily which is benign but annoying, this is why they though thyroid. ANyway any advice on more testing, or is the TSH the only one? Thanks Jenn
      Please hurry Sansrosa!!!


      • #4
        no Jenn Fran, TSH is not the only one its just the most common one and the one doctors mostly rely on...which is possibly not for the best.

        cant believe I forgot to include this stuff...

        There is actually alot of controversy surrounding the TSH test because of all the false pos, and false negs.(though for me, it worked ,and for alot of other people it worked)...iodine intake for that day affects it, as do many other factors...some doctors dont want to include the tsh test at all anymore because it can be so misleading.

        The antibodies test is another test that can indicate thyroid problems...however if they do this they will probably need to still do other tests (probably the RAI uptake & scan I-123)

        that is because you can have a high antibody count for reasons other than a thyroid issue.. such as you could have some other auto immune disease as there are hundreds and you could also have some kind of systemic infection ......or at least this is what I have understood.

        just to give you some indication of where MY body was...a normal antibody count is 20 ...mine was over 300....!!!!!!!!!!

        I will tell you my tests now so far...I am due for another blood test now to check the levels of tapazole and the thyroid hormone levels...they have to do this every month or so because.... your Graves can "give up" and spontaneously go into remission sometime between 6 mo and 1 endocrinologist said that this was seen in about half his patients with Graves who got treated with oral meds. So they are constantly testing and calibrating meds just incase I decide to go into remission...which I am hoping hoping hoping for.!!!!!!!!!!!

        but are my tests in order

        TSH fasting

        TSH non fasting

        ........then my general doc. says i am suspect hyper and sends me to endo

        The endo...again not relying on my other doctors reports...and on tsh ingeneral..........

        orders another TSH at a different lab

        and orders a Sonogram of my rule out a tumor and or cancer.

        Then at the same time he takes several more vials of blood to check my other vitamin and hormone see if i have a deficiency or a surplus in some area (i dont)

        then the famous Antibodies test

        Endo makes a tentative diagnosis of hyperthroidism caused by Graves

        but orders more tests to confirm what the antibodies are saying..


        the RAI uptake and Scan I-123

        or RadioActive Iodine uptake and scan

        see the thyroid utilizes iodine to make its crazy batches of T3 and T4

        so I am off seafood, tablesalt and all iodine things for a week...

        then I get my radio active pill at the hospital...they measure the radioactivity and I swallow it...then they measure the thyroids uptake of the radioactive iodine...I have been off iodine for a week so the thyroid is good and hungry for iodine.

        It uptakes the radio active iodine...then it glows....then they can scan it.

        they scan it several ways...they first scan your leg (which is where the thyroid is NOT located) to see how much iodine has not been uptaked by thyroid...then they scan the little hollow of ur neck above your collar bone and below your voice box (because this is where the thyroid IS) and measure how much RAI has been taken in by thyroid. This test is done twice over 2 fasting and one not.

        Then they scan you with a huge cone shaped camera which you have to lay motionless for 20 solid minutes on a bed while it hovers above you. It is shaped like a tornado and the little part is positioned right above ur thyroid. This takes a picture of thyroid in action..they want to see if it is all lit up or just one or two areas....

        Anyway my Thyroid is going crazy with the nodules which means I am diffuse (meaning a general all over craziness of the thyroid not an isolated nodule )

        These tests finally confirmed my endo's suspicions and he diagnosed me officially with Graves and immediately wrote me a script for Tapazole....only script I filled...because I knew he was right this time, I knew I had a doctor I could trust endo has practiced for 52 years, he is way beyond retirement age but still very sharp...he donates his profits to charities, and the local orchestras. He is not in it for the money. He has seen thousands of cases and has years of experience. He wrote my general practitioner a four page letter about my diagnosis and his plans for me. She told me that was the most thorough report she had seen in her history of practicing medicine. She is the one who had the hunch that I could be hyper in the first place, so I remembered to thank her....

        I have to tell everyone DONT be satisfied when a derm tells you u got this or that....derms dont focus on the whole them Rosacea is the disease...the end....when my reality was that it was just a symptom...the beginning, the tip of the iceberg of another disease.

        And if a doctor is offensive and tells you that your symptoms like rapid heart beat or something else really scary, is a mental condition, be brave enough to walk out...and question his "findings" especially if he has not done any tests!!!!!!!!!!!!!!!!! UN * BELIEVE* ABLE

        there are sssssssssssssoooooooooooooooo many docs who could
        just could not care less about you or your problems...even though u pay them dearly they were never meant to be a doctor, they are either in it because they want the money and security and status or they were pushed by their parents.

        a doctor should be a detective for your body. They are there to detect what is wrong with your body. and hundreds of thousands of things can go wrong....A good "body-detective" will be curious about your symptoms, and listen to you carefully, then they will order many tests and to rule out or confirm their thoughts about what could be wrong. IF they are not like this...say if you go to a derm and she takes one look at ur face and says ROSACEA! and offers to laser you for 500 bucks a treatment you should run run run run the other way....scandalous "doctor" I thought she would at least take a scraping to put under the microscope. But she wasnt there for more than 5 minutes and she didnt come with in 4 feet of my if I had the bubonic plague. anyway I am on a tangent ...but My point is that you must look diligently for the right doctor. A REAL DOCTOR. and you must run away from all others or you will waste years of your life in I did.

        If you look at your face, and can say "yes there IS something wrong!!!" you have any other symptoms that may seem totally unrelated?? One of my most embarrassing symptoms is that I had diarrheas quite often, I almost did not mention that to her, but it was a true symptom. No matter how ridiculously unrelated u might think it is write it down and tell the doc. a good doctor will put these puzzle pieces together for you. So if you have rosacea..and say your foot hurts or your hair is thining mention all these things to the doc. it very likely is related.

        anyway....Graves is quite common, and its hereditary. But its not in anyway a death can be deadly if ignored, but its so easily treatable


        • #5
          Thanks for all the info. I have had autoimmune tests done. I had ANA, anti-R, SLO, (something like that.) SLE specific for lupus, my CRP for inflammation Hormone levels, thyroid TSH, RF (rhuemotoid factor), and all the other basics, vitamin levels checked, lyme test done three times, you name it I have had it.

          My symptoms are twitches all over my body, bowel problems, skin problems, muscles aches, joint aches...and lovely rosacea....Jenn
          Please hurry Sansrosa!!!


          • #6

            What ever you do, please dont ever give up!

            I also would not put it outside the realm of possibilities that you could have something very rare or that they have not discovered yet. There could also be more than one thing wrong...sorry if this sounds horrible!!

            You certainly have a bevy of symptoms! I dont doubt that at least one of those or maybe all are related to the appearance of the rosacea.

            and you said that you had 3 TSH test preformed, did you go to an endocrinologist, or were these ordered by your regular doctor????

            I would not settle for a vague answer from a doctor, I hope you are getting second, third and fourth opinions.

            I would make sure I had good health issuance and I would not be afraid to also spend money out of pocket on this. I mean, what good is money anyway, if your health is compromised and you can not enjoy it.

            There are clinics out there, I think the MayoClinic is one, which does alot of research and discovers new diseases, and its where people go to be studied in depth when the regular docs can figure out what is wrong. Maybe you should think about going to one of these....a research hospital I think they are called.

            I have often wished I was a biomedical researcher, I know exactly what area I would focus on...


            • #7
              for those interested ...

              Here is an article that describes Graves disease better than I could myself...I have "bolded" the symptoms which Graves disease has in common with rosacea....

              The most common type of hyperthyroidism is produced by a generalized overactivity of the entire thyroid gland. This is called diffuse toxic goiter: diffuse because the entire gland is involved in the disease process, toxic because the patient appears hot and flushed, as if he or she were "toxic" due to an infection, and goiter because the overactivity sometimes enlarges the gland. Goiter is also known as Graves' disease, in honor of the Irish physician, Robert J. Graves, who was one of the first to describe this condition and who first noted the protrusion of the eyes that is sometimes associated with it. Between 1 and 2% of all people in the United States will develop Graves' disease. It is 3 to 4 times more common in women than in men, and typically begins between the ages of 20 and 40.

              If you develop Graves' disease, your thyroid will begin to produce more and more thyroid hormone. As it does so, the gland will usually grow larger and will, in some cases, even grow big enough to protrude noticeably in the front of your neck. You may notice the enlargement in your neck yourself, or you may not notice anything until a friend or your physician points it out. If the goiter is small, you may only sense the presence of a lump while swallowing. Typically, in this form of hyperthyroidism your thyroid gland is not tender, and it is not uncomfortable when you swallow.

              As you develop hyperthyroidism, you may lose weight even though you seem to eat plenty of food. You may feel nervous and jumpy and may become quite irritable and quarrelsome. You are likely to perspire more than usual and dislike hot weather. Your skin may gradually become thin and delicate, and you may notice that you are losing some of the hair on your head. As your fingernails grow more rapidly, you may notice an irregularity of the nail margin, making it difficult for you to keep your fingernails clean. It is also possible that you could develop itchy hives on your skin.

              Signs & Symptoms of Graves' disease

              Muscle weakness, especially involving your upper arms and thighs, may make it difficult for you to carry heavy packages or to climb stairs. You may, in fact, experience such marked leg weakness that you cannot stand up from a squatting position without help. You may notice that your hands shake, and at times this tremor may become so severe that you can't even carry a cup of coffee without its rattling or spilling in its saucer. Your heartbeat may speed up from a normal rate of 70 or 80 to well over 100 beats per minute. Occasionally, without warning, your pulse may quicken abruptly, causing very rapid palpitations that last several minutes and then end as mysteriously and abruptly as they began. You are unlikely to have real diarrhea, but your bowel movements may become loose and more frequent.

              If you are a woman, your menstrual cycle may change. Your flow may become much lighter and the interval between menstrual periods may lengthen. More rarely, your periods may become irregular, or may cease entirely, making it more difficult for you to become pregnant. If pregnancy does occur, there appears to be an increased likelihood that you will have a miscarriage. Women usually notice little change in their breasts, but if you are a man, your breasts may become slightly larger and may be tender.

              Eye Involvement

              One of the most puzzling and least understood aspects of Graves' disease is the way it may affect your eyes. Usually the change is simply an elevation of your upper eyelids that makes your eyes appear more prominent. Occasionally, however, swelling of the tissue behind your eyeballs may cause actual protrusion of the eyes known as exophthalmos or proptosis. Sometimes your eyes will feel dry or become red and irritated. A few patients have involvement of their eye muscles that may make them see double. In its most extreme (and very rare) form, the nerve to one or both of your eyes becomes inflamed and you may have trouble with your vision. This condition is known as optic neuropathy.

              Elevation of the upper eyelids may be seen in anyone who has a high level of thyroid hormone, even someone who is taking thyroid hormone tablets in excess. The other things that can happen to your eyes in Graves' disease are unrelated to your blood level of thyroid hormone. If you are one of the people with Graves' disease who develops eye inflammation and protrusion, the eye problems probably will begin when you first become hyperthyroid. Quite often, however, eye problems and thyroid overactivity occur at different times, occasionally separated from one another by many years. Very rarely, a person may develop eye trouble as the only manifestation of Graves' disease.

              Eye disease is therefore one problem that occurs only in the type of hyperthyroidism that is caused by Graves' disease. Another condition unique to Graves' disease is a very rare skin disorder that appears on the front of your legs and rarely on top of your feet. This is called pretibial myxedema, and takes the form of a lumpy, reddish colored thickening of your skin. It is usually painless and not serious. As with the eye trouble in Graves' disease, pretibial myxedema may occur anytime. Its appearance does not necessarily coincide with the beginning of your thyroid problem, nor is its severity related to your blood level of thyroid hormone. One of the rarest manifestations of Graves' disease is thyroid acropachy, which causes the tissues around the base of the nails to become swollen, but not painful. Periodic paralysis is yet another condition seen in occasional patients with Graves' disease. This disorder causes sudden attacks of profound weakness of all of the muscles of the body. In susceptible patients, sugar or starchy foods appear to cause a lowering of the blood potassium level, which prevents normal muscle function. For unknown reasons, periodic paralysis is most often seen in Asian men with Graves' disease.

              Causes of Graves' disease

              Graves' disease seems to be caused by the interaction of a variety of different factors, including heredity, your body's immune system, your age, sex hormones, and stress. Some sort of genetic predisposition seems to be needed first, and can be thought of as an inherited tendency to develop hyperthyroidism. If you have this factor, you may develop Graves' disease at some time during your life, or you may not, but if you lack this genetic factor, you probably cannot develop this disorder.

              This type of hyperthyroidism clearly runs in families. If you have Graves' disease, and if sensitive thyroid tests could be carried out on your relatives, they might show mild thyroid abnormalities in one of your parents and one of your grandparents, in some of your aunts, uncles, brothers, and sisters, and possibly in some of your children as well. Fortunately, few of these relatives will ever become sick enough from their thyroid problems to require treatment; but some of them should be checked occasionally in this regard by their family physician.

              Studies in identical twins confirm the importance of genetics in Graves' disease and also show the ability of other factors to modify the disease. Usually, identical twins either both have Graves' disease or neither develops the problem. But since other factors influence the disease process, twins rarely experience the onset of hyperthyroidism at the same time, and the course of the disease in the twins may be quite different.

              There appear to be many different factors that can "trigger off" Graves' disease in a person who has inherited a tendency to it. Many thyroid specialists believe that stress can play a role in starting the hyperthyroidism, for we have all seen patients in whom a stressful situation, such as a death in the family, has preceded the onset of this condition. Sex hormones are also important, for the disease is seven to nine times more common in women than in men, and not infrequently begins after a hormonal change such as pregnancy. Age also seems to have something to do with the onset of Graves' disease, since it is most likely to appear when you are between the ages of twenty and forty. Finally, your body's immune system appears to play a role in the production of this disorder.

              By an unknown mechanism, substances called autoantibodies appear in your blood. These autoantibodies bind to the cells in your thyroid gland and stimulate the thyroid to overactivity by mimicking the effects of pituitary thyroid stimulating hormone (TSH). This causes the thyroid to enlarge and to make more thyroid hormone. Thus, instead of being under the control of your pituitary gland , which is the normal situation, your thyroid becomes controlled by these abnormal antibodies in your blood.

              The immune disorder that characterizes Graves' disease usually develops spontaneously, but recent studies have shown that you could be at increased risk for the disease if your thyroid gland was inadvertently damaged by x-rays for cancer therapy in the past or if you are taking one of the new immune-altering drugs like interferon and interleukin.

              In summary, a susceptible person develops Graves' disease because of one or more factors that trigger off thyroid overactivity. As thyroid function increases, more thyroid hormones are released into the blood stream, producing the symptoms of hyperthyroidism.


              • #8
                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
                Please hurry Sansrosa!!!


                • #9
                  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 may very well have it...or something else entirely.

                  There are also other thyroid disorders that include the symptoms you mentioned AND include weight 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 is a support forum ...very much like this one...and just reading it helped me.

                  There are alot of people on there though 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 have faith

                  anyway the website is

                  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 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 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. 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) actually pursue a solution....bleh.


                  • #10
                    more about adrenal fatigue

                    an article about adrenal fatigue...



                    • #11
                      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



                      • #12
                        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 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


                        • #13
                          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.



                          • #14
                            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.


                            • #15
                              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.