[Starvee44]

#1019450

Hi, I made this video and wrote a text about Graves’ Disease:

http://www.youtube.com/watch?v=7JwVpXggVZg

(part I of V)

Please comment on Youtube! Thanks.

Starvee44

[Starvee44]

#1071703

http://www.youtube.com/view_play_list?p … 9EED32EBD1

I added the above videos a few weeks ago, but have since completely rewritten the text that accompanies it. It’s my final ‘report’ on dealing with Graves’ disease for 9 years, and have spent a lot of time of compiling it and adding meaningfull scientific excerpts. I tried to point out a few important things we gravers have to deal with, and hope it’s of some use to anyone… Take care, everyone.

Graves’ Disease Explained through Symbolism
Text accompanying the video on YouTube

[DISCLAIMER: I’ve been dealing with Graves Disease since I was 15 (Im 24 now). I’ve experienced and learned a lot throughout this ordeal. Now that I’ve reached the end, and can start growing a new life at last, I thought it would be a good finale to compile some sort of report, put all the things together with hindsight as my guide. I will include some personal anecdotes, to point out a few things, and give an impression of what challenges GD can pose to one’s life. I’ll tell how I personally see & dealth with the whole thing, and also provide some non-jargon, instinctive explanations for some GD-experiences (personal views). It’s however very difficult to give detailed, meaningfull talk about the inner experience, so consider it an impression; it definitely has it’s flaws. But from what other source than from a Graver are you gonna get an empression of GD? Note that it is coloured not only by my own personal particularities and the age of onset, but also by the length of my experience, which produces additional challenges. It’s difficult to give good advice that applies to everyone; YOU know best who you are and what your relationship is with GD, so read as much stories, brochures, articles, books, as you can, and extract your own advice, see what applies to your situation. Some of the advice/explanations I give in this text might NOT apply to YOU and your situation: the you I use in this text is merely generic, and my story is just one of many different GD-cases. More on this subject in the post scriptum. Also keep in mind that I’m no doctor. My main focus in this text will be on the more complicated (side-)effects of GD; for a basic understanding, see the video intro of Part I]

"The mental, physical, spiritual, emotional, professional, and social parts of an individuals life are affected adversely and profoundly by this condition." (Jadresic, 1990).

http://video.about.com/thyroid/Thyroid-Disease.htm
http://video.about.com/thyroid/Thyroglo … rotein.htm

GD (aka Basedows Disease) is an autoimmune disorder, where antibodies attack the thyroid, causing it to overwork, i.e. produce too much thyroid hormones (=hyperthyroidism), basicly poisoning your body: thyrotoxicosis (as in toxic). This affects every chemical reaction in every organ of your body, including the brain. GD often is genetic (runs in the family), but it’s not known what exactly triggers the antibodies to go on a rampage, so treatment is not directed at the real cause (the antibodies), but instead takes aim at the attacked thyroid. Your GD experience can cover many years. Treatment is not straight-forward, goes with ups & downs, a lot of uncertainty & waiting, and with difficult decisions to make. You will encounter lack of information, vage information, partial information, misleading information, and sometimes plain wrong information. Not all doctors are equally qualified to deal with this disease. You’re going to have to deal with several doctors (mainly physician, endocrinologist, eye doctor, psychologist), who will not always take a unified approach. If possible, seek out doctors who take personal interest in GD (especially in the case of endocrinologists & psychiatrists) and who work in the same hospital.

GD often comes as two for the price of one: the ranks of the thyroid antibodies are joined by antibodies that go after your eyes. These will attack the muscles in your eyes, causing them to swell, which in turn causes your eyes to bulge. This may sometimes be extreme (as in eye-operation extreme). Most Graves patients will however have dry, itchy, pressing, uncomfortable eyes, without them bulging very much. Once diagnosed, the right eyedrops should bring good improvement to the dryness. The eye issue can be a REAL pain in the ass, on top of all the other things, even if it isn’t that serious.

There are three different treatments: medicines, surgery, radioactive iodine (RAI). They all have their (dis)advantages. None give certainty, all keep you waiting. The medication route has high relapse-rates, is prone to fluctuation, but isn’t invasive. The goal is to get your thyroid levels within the normal range, and then all depends on the level of your antibodies: will they go below the threshold? On average, meds are given about one-two years, but can be given indefinitely, as often happens in Japan (no radioactive treatment there; guess why). When antibodielevels are OK, you can stop taking medicines, in the hope that your thyroid will take over correctly, and that antibodies don’t return. If antibodies stay too many, you have two options. RAI: easy but radioactive, quarantine time, and you sometimes need two intakes. Often results in hypothyroidism, meaning you’ll have to take thyroid hormones for the rest of your life. Main treatment option in the USA. Surgery (thyroidectomy = removing of thyroid tissue): expensive, sometimes a second operation is required, often results in hypothyroidism. It contains small risks (anesthesia, damage of vocal cords, removal of the parathyroids), so finding a skilled throid surgeon is important.

"There is no standard treatment approach to hyperthyroid GD. The choice of therapy varies according to nonbiological factors – physicians’ training and personal experience; local and national practice patterns; patient, physician, and societal attitudes toward radiation exposure; and biologic factors including age, reproductive status, and severity of the disease. Moreover, individuals who do not have a spontaneous remission become lifelong thyroid patients." (Kaplan, 1998)
"We have recently reported that GD has negative consequences for the patients Health Related Quality of Life (HRQL) even after 14-21 years, especially with regard to mental performance and vitality. However, the mode of treatment for Graves hyperthyroidism whether surgical, medical or radioiodine, had little impact on HRQL in the long-term." (ABRAHAM-NORDLING et al., 2007, Thyroid hormone state and quality of life at long-term follow-up after randomized treatment of GD)
"The proportion of all patients with relapse was 47.2 % two years after withdrawal of anti-thyroid drugs (ATD). (…) In conclusion, we found no difference in relapse rates in the patients with GD treated with ATD alone or higher doses of ATD in combination with T4 for 12 months. After medical treatment, smoking, large goiter size and Thyroid Receptor Antibodies at the end of ATD treatment are strong predictors of relapse in these patients." (NEDREBO et al., 2002, Clinical Study Predictors of outcome and comparison of different drug regiments for the prevention of relapse in patients with GD)

"Therapy of Graves hyperthyroidism with thionamide anti-thyroid drugs is accompanied by a gradual remission of the autoimmune aberration in the majority of patients. The most likely mechanism behind this remission has been considered to be a direct immunosuppressive effect of thionamide drugs. However, a number of findings in clinical studies of patients with GD indicate that remission is probably not caused by a special effect of thionamide drugs. Many studies have shown that remission is linked to restoration of the euthyroid state, and that it is independent of drug dose and type. Moreover, similar remission is observed when patients become euthyroid after thyroid surgery. In an explanatory model described, it is assumed that the autoimmune aberration of Graves disease is often basically quite mild and self-limiting. Patients may become ill by the running of a vicious cycle of hyperthyroidism worsening the autoimmunity, and autoimmunity worsening the hyperthyroidism. Once patients are made euthyroid by one or the other drug or by thyroid surgery, the majority of patients will gradually enter remission of the disease. The conclusion that remission is associated with restoration of the euthyroid state, and that it is not a special drug effect, highlights the importance of making and keeping patients with Graves disease euthyroid." (Peter Laurberg, 2006, Remission of Graves disease during anti-thyroid drug therapy. Time to reconsider the mechanism?)

Some of the first effects you will experience are: restrainment, losing spontaneity, racing thoughts, memory problems. And these are just the forebearers of the really unpleasant ones. What really sucks those first years, is the restrainment and later erratic-ation of your behaviour, which slowly creeps over the border of subtlety, untill you (and everybody else) basicly get used to it (in spite of the fact you’re still fighting it). On the one hand you are restrained by this unknown source, and in response you try to break free, try to uphold your convictions (although they are getting raped before your eyes), which causes unsteady behaviour. Many Gravers talk about the rambling of thoughts, like they never end. It’s like your mind still tries to understand things, but the hardware forbids satisfying results; you cannot stop your software from trying, though, it keeps trying to fulfil the job it’s programmed to do. In a healthy mind, your toughts and experiences lead to conclusions, opinions, convictions in a short time, in a natural cycle, but now it gets endless, you can’t properly finish it. That’s what causes the overflow. Analogy: when healthy, you are like flying a plane over the Amazon forest. It’s easy, fun, natural. But when your plane crashes, and you have to go on foot, you can hardly progress. Even if you give it your all, the same mile you would normally fly in a minute or so, now needs an abnormal amount of effort and time. You’re going through the jungle on foot, while "everybody else" is flying over it.

Everything gets complicated. GD will progressively blindfold you. Soon everything will become a chore, relationships will get strained. You can kiss your personal develpment (creative, social, spiritual,…) goodbye from the very moment this disease begins it’s subtle ascent: you will slow down, stagnate, and gradually crumble (importance of an early diagnosis!). You can forget about good conversations and heartfelt romance. Soon you will start to realise you are getting nowhere, and are just fighting to keep the status quo. At first you’ll rudimentary stay on the path that you were on, and vaguely believe that you are still functioning, in spite of the fact that you’re vaguely aware that an unknown saboteur is taking away something important (later you’ll realise it was the ground under your feet). I kept my head above water until my diagnosis, but unfortunately, that wasn’t the end. It was however the end of my fuel: only some drops left. What followed were even worse years than before: when the thyroid levels drop, you’re not being pushed forward (in a stuttering manner) by this relentless energy anymore; instead the exhaustion will get the upperhand and despite all your efforts, you will again not get very far. Combine this with a total lack of information, and you’ll need all the strength thats left in you to keep functioning in society, to keep it together, to start researching when you’ve finally figured out that GD is the answer you’ve been looking for all those years. You will get out of back-up fule and start consuming your muscles, drive on your rims. And then, chances are you meet your breaking point. Possibly several ones (no reason to give up, though).

It is of the utmost importance that you get your thyroid levels within normal range, and keep them as steady as possible: only then will healing begin. I myself (as many others) had the unpleasant honour of quite frequent fluctuation over the years, while I was being treated with meds. This is a real bitch, and only delays and complicates everything. Ask your doctor for the most stable treatment (e.g. there are different ways of administring/changing meds). Since the start, I’ve had a bloodtest every 6 weeks. I’m mentioning this because I’ve read accounts of people only getting bloodtests every 3 or 6 months (and have consultations by telephone). If this is the way your doctor checks up on you, you should seek out someone else; GD is obviously something too abstract for him. Also, get the level of your antibodies checked every 3 months; that way, you know what’s going on "in the background". Use a calendar that gives you a good year-overview, where you can note when you change your meds, when you need to make an appointment, how you are basicly feeling, etc. Get copies of your bloodtests; you can chart the results. Keep a journal of how you feel and experience things, and what you are doing: it will be interesting to reread it along your recovery. The journal will make the slow improvement more visible, and will be proof of the challenges you were facing, so you can see the reason for the wasted years & mountain of mistakes, when the time comes to get moving again. Otherwise, things are easily forgotten; the weakest ink is better than the strongest memory (especially if you have GD).

After the start of any treatment follow months of uncertainty & waiting, to determine if it worked/is working properly: what’s it gonna be, is it coming back, is it "over", what am I feeling,…? Meanwhile, your life is basicly on hold. Not much you can do about it, just try to keep your head above water, and if you can, take it easy, take your time. You need to be back completely, before you can go chase your dreams, anyway. This can be very frustrating, but if you’re not entirely healed, things will only be half (if you’re lucky) as intense, tasty, rich, ‘right’ … as before GD. During recovery, when your planning skills improve, chances are you will still be barred from planning your future, as everything depends on how well you will recover: will I get my sharp mind, energy, proper vision, back completely? You will! Someday… Prepare for that day, as best you can. If you are in prison for x years, best you can do is read, train, study, plan, to prepare for the time you will be free. Same with GD. It’s difficult to do this, however, if no-one is able to tell you if you will ever be free. You are basicly led to believe (not necessarily actively) that you’re not in prison, nothing is wrong, your complaints are not from the thyroid, your thyroid is fixed now, it’s all in your head. In that belief, it’s difficult to prepare for release. When you know you ARE in prison, and WILL be completely released someday, it’s easier to fight the tiredness (& co.) and keep working at it, keep motivated. That’s very imported. Thus, I’m telling you now: you’ll be free one day, so be patient, and prepare. A quote from Muhammed Ali seems in place here: "I hated every minute of training, but I said, ‘Dont quit. Suffer now and live the rest of your life as a champion." I myself am getting my Bachelor degree in History (almost got it). It’s good to be released with a diploma (besides your PhD in Patience), but: it was VERY hard, I needed (and had) some incredible luck, and I certainly wasn’t able to give it my all (on the contrary), so that’s why I aimed "low"… (before GD I could choose whatever career I wanted, but history proved to be my highest possibility during GD long recovery). So do what you can, what you think might be usefull when you get out.

Based on my own experience and on all the accounts I’ve read, I can propagate that total recovery from GD wíll happen, but slowly. I think it’s safe to say that as a rule of thumb, the longer you had to wait for diagnosis, the more time you will need to recover completely. I was undiagnosed for 6 years, it took me (+)3 years to heal. It’s one thing that most Gravers seem to agree upon: it will go slow, but it will keep on improving. Slowly. Cripingly slowly. Month after month, season after season, year after year. I always imagined it like this: there’s the thick, very visible yo-yo/rollercoaster-line, that erraticly goes up & down. Behind this line, there is the slim line, that works on a longterm basis. The turtle goes up, very gradually, indisturbed by the storm, in the background… It’s like the RAM-memory of your computer has been taken away, and now everyday you get 1 megabyte back: it’s invisible in the short run, but once in a while you’ll realise you’re improving, evolving, getting more resources at your disposal. After a while you’ll be able to run the more complicated software again. So! Now you know that it will go slow. The knowledge of that makes a big difference.

About "good advice". It’s frustrating to get "good advice" (from people who mean well) that you accede to, but can’t put into action due to invisible hardware problems. If you want to aggrevate a Graver, give him this kind of advice: "just listen to your body", "just relax", "hey, everybody has a bad day now and then, tomorrow things will be better", "just express your feelings", "just go on a nice vacation", "just enjoy life!", "just be happy!", etc. People think it’s you, you don’t try hard enough. They should know, that Gravers are probably working themselves 300 % to the bone, only to get little result in return, and to keep smacking on their face, time and time again, hundreds of times, thousands, with no explanation, other than that it’s them – you don’t have to be a psychologist to realise that this is quite unhealthy for your self worth if this goes on for long: there’s a limit to what one can take. After falling flat on your nose, teeth, chin, for 2000 times in a row – and getting up everytime cause you swore you’d never give in – it’s little wonder that you’re sick and tired of it, and sick and tired of being sick and tired. And yes, sick and tired of being sick and tired of being sick and tired.

If you got GD, especially the severe cases, and when you lack the right information, it’s only human to sometimes want to give up, to take some days off of constantly trying to chase your dreams with depressing results (although a break doesn’t quite feel like a break if you have GD; there’s really no escape). Try not to feel too guilty about it: the pathological guilt & doubt & shame that are so hard to fight are part of the Graves tsunami.

So give yourself a break, you’re fighting a (really) though enemy, in more than just the obvious way. You are facing giant problems, in the inner and outer life, so it is imperative to put things in perspective. To be able to do THAT, however, you’ll have to wait for your brain to get better. Bite the bullet, you’ll have to bare it. All of it. And you’re gonna. ‘Cause it’s your life were talking about here. You’re going to get all your dreams back. Things are going to get better. Slowly, with lots of ups and down. But don’t stop. Read. Rest. Inform yourself. Rest. Search. Rest. Keep trying.

So much for the peptalk… But seriously, that’s the sort of things I would try to say to myself in my times of peril, even though the words seemed so empty sometimes (if you lack the proper information, it’s difficult to convince yourself that you’re gonna be OK someday). If it’s getting too much too handle, you might want to get it all of your chest, once in a while; don’t let it consume you. The problem is: to whom? Whom can you talk to? Even if you know you’re sick, you might not have (or be able to properly incorporate) the necessary information. You know how it’s gonna sound like, that your speech is erratic, incoherent, and that all previous attempts have only proved to be frustrating & unsatisfying. When you try to explain your situation to a ‘layman’, your friends, family, without the proper information… little good is gonna come from it. Consider how they must percieve you: you’re seriously sick but don’t know it, you’re always struggling with everything, always in some mental anguish, irritated, trippy, complaining about all sorts of vague problems, and you never seem to get better: it just drags on. (Realise that GD is in the chronic illnesses category, i.e. 6 months or more)

You need someone you trust (realize & ignore the subtle paranoia induced by GD – that might hold you back), who has read enough about GD to really understand it (and who has a minimal amount of wisdom, heart, empathy). You have to be very vigilant in dealing with GD, which is hard in your condition. So it’s very good to have someone healthy and sharp supporting you with all the practical issues (searching for doctors, information, appointments, medicines, communication with school/work, etc.). Try to research doctors, make calls, exchange information with fellow Gravers. It’s not easy to research doctors, but on some forums patients give recommendations about doctors in certain areas. DON’T underestimate the importance of a great doctor: it can be VITAL for the quality of your life. Superdoctors exist; find them!

About alternative (or "magical") cures for GD: there are none (NONE!). When you are in the midst of your illness, and you lack information, you’ll go many places for answers. You WILL encounter quacks on the internet (e.g. search Graves Disease Curemovie on YouTube) and off the internet, e.g. New Agers. Not all deserve the word quack, many really believe in it, but IMHO "most" are quite naive. A (stereo)typical New Ager will tell you that "your GD is your body telling you that you are not in contact with your emotions, that you aren’t open. That’s why it happened, you were thinking too much, caught up inside, keeping people out"… Don’t believe it. It’s simply not true. If you have Graves, then yes, the above will most likely be true, but it is the (natural) consequence of the illness, not the cause. And you ARE aware of those flaws (that are so out of character for you), ’cause you’ve been fighting and trying to understand them for so long. What the New Ager actually does then, is merely introducing more doubt & guilt ("you are the cause", while you were doing everything you can, day in day out, to prevent what has been happening). He’s basicly telling you not to trust what’s left of your gut feeling. He is mixing part of your (invisible) reality with his own delusional ideas; he hereby creates an explanation that is easily believable, "it could be…". They believe in it themselves, which gives them more credibility, but in reality they are very much locked up in their own head (as are you, but at least you know it…).

If you carefully look at what kind of reality they are implying by saying what they say, you’ll see that their descriptions are based on a mash-up of semi-founded ideas and flawed interpretations. Remember, talk can be produced easily & cheaply, and can be very deceptive. Reality is ultracomplex: every idea you propagate needs to fit in a great number of other ideas about reality. A person who is aware of the grandness, will always be very conscious of the relative value of his hypotheses, will always postulate that "I could very well be wrong, this is just an honest attempt to understand, from my own mind and perspective". To be able to communicate a certain ‘Truth’ properly, one has to have a very deep insight in who one is, have no issues whatsoever, have an encylopedia of human experiences in one’s mind, and be able to fully put oneself in the other (wo)man’s shoes. A stereotypical New Ager will act as if his ideas are The Truth, and "if you don’t discard your false beliefs and open your mind to (his idea of) The Truth, you will never find the answers in yourself. You need me. Let me guide you. And don’t forget to pay…" Think about it: if someone comes to him for help, it’s not difficult for him to "clairvoyantly see that you have a shield around you", and more general descriptions like that. It’s difficult for a patient to really understand what GD exactly does to his/her thinking, emotions & inner construction of the world, let alone that someone else (with no knowledge about GD) tries to give "good advice": (s)he will reason from her own healthy mind, which is a totally different situation. Your opinions, convictions, ideas,… aren’t as solid as they used to be, which means you are easily influenced when dozed with GD, so be careful.

A few months after my experience with the New Ager, I thought to myself: Hey, why not go to a psychiatrist? (S)he studied 10 years about the body and mind, so that might be the place to get adult, serious, knowledgeable, scientific help. If you’ve read the GD literature, then it can’t be so difficult to understand, can it? I mean it’s all pretty obvious. Guess not: ironically, I basicly encountered the core of my previous experience: bla, bla, bla. It’s frustrating when you think someone is qualified to understand and you spill your heart out, only to get a pitiful response (yes, pitiful, judging in the light of what GD constitutes). All I wanted was to talk to someone who really KNEW what this disease was all about, who could SCIENTIFICALLY ENDORSE my complaints/experiences/feelings, to help my stammering mind trust its own judgement about everything it had/was experiencing, NOT to talk general softcore psychobabble, as if GD wasnt involved! Her exact words/ideas: "Why did this disease had such an effect on your life, why did YOU struggle with it so much, in contrast to other GD-patients? You are blaming GD for everything that went wrong. You are running away from something. I talked about your experience with other doctors and they are also puzzled. You are in denial. You are seeing it too black-white, a lot of it is also you." This was exactly the reason why I had put off seeing a psych for so long, I just knew (s)he would induce (more) doubt. So, if you’re looking for one, make calls and hear them out about their experience with GD.

"You’re running away from something." Give me a break. I’m giving it my all, lady! "No, no, you’re running away, I’m telling you." I thought this kind of Freudian soundboarding only survived in slapstick comedies…

Luckily, by this time I had basicly given up on the prospect of live medical acknowledgement and had embraced the literature about GD (I went to the psych because I’d read some positive accounts by Gravers about SSRIs and wanted a prescription). By the third time I went to see her, I was a lot more in control, my mind was clear, the information-processing and conclusion-making parts of my brain were up and running again, I’d read a lot about GD, seen the facts & data, incorporated & processed it, got a lot of the answers. I thought to myself "man, I gotta make a clear statement here, now that I’m finally out of that prison". So I calmly tried to keep all the aspects in mind, put myself in her shoes, objectify my own position and situation, and tactfully pointed out that the facts speak for themselves if you look at them rationally & objectively & ‘wisdomly’; that, yes, I DO "blame" (*grrrr, dont rape the cause into an excuse, woman!*) GD for "all" that happened, and that this is not self-delusionment but the $%#&$ TRUTH; that I’m not using GD as an excuse, but that I cannot go around it either; that I really do know what I’m talking about after 9 years of being in my body experiencing this chaos, and observing, contemplating, researching it as truthfully and as deeply as my mind permitted; that everything I’m saying here can be backed-up by the medical literature, and by the stories of other people; and that I actually couldn’t believe she was saying what she was saying after she (supposedly) read the thumb-thick packet of information I’d given her a few months ago; at that time she claimed she knew all about GD (and indictated she wouldn’t read it). I could tell she didn’t, but…

Consider: if a patient spends a PhD-like amount of hours researching every detail of his devilish disease (and in so doing lets the theoretical side & the actual experience interact, which gives him an understanding no diploma can easily offer), gives you the core of his research for better communication & comprehension, and you don’t see the value of that gesture, then isn’t there something wrong with your methods? Every-body has a different point of view, and access to different information & experiences. There is always more to learn. The golden doctors know that. The gold plated potatoes apparently don’t (still some residual frustration, can you tell?). Sure, there are many things that are similar in many diseases, and psychs mostly have a good understanding about the accompanying mental issues, but in the end every disease has it’s particularities, and small print. And GD certainly has a LOT of small print. The many different possible aspects that can be associated with GD produce a unique cocktail that is different than just the sum of its ingredients, AND is different for every patient. This applies of course to every disease, but with GD it’s a matter that you might want to keep in the back of your mind. So, tip to the psychs: the thing most GD patients need is ACKNOWLEDGEMENT of the TRUTH (not friggin’ debate with you). By providing this, you will help them more than you/they know. Oh, and doctors: give us some credit for living in our own body and knowing what’s going on in there. By dissmissing all sorts of complaints you are implying that one needs a medical degree to determine how one feels. In reality, thats not the case, you know… Maybe you’ve been in your marble tower for too long.

Now, here comes the real irony: you will experience basicly the same sort of talk (~ my New Ager & psych) from everybody around you, because they do not know about GD, and reason from their own life, their own healthy mind which is natural, but causes an unfortunate element in your Graves experience. You are in a mental state where your defunct hardware will cause pathological doubt (not directly content based, but resulting from hardware malfunctions). This will then mix with justified, real doubt, if you do not possess the information to correctly judge everything that happens in your life. Thus, see the staggering situation: you are in desperate need of an acknowledgement and explanation of your complaints, but all you get is an acknowledgement of your doubt, produced by people who incorrectly assess your situation by leaving out the most defining factor: GD. And keep in mind that the deflated mind of a Graver cannot properly handle information, ideas, opinions (which is what talk, advice, criticism consists of). You havent got your own live convictions & ideas to examine, counter, interact with the things people say, which will gradually produce the feeling that you are under attack (your world will get a hostile flavor). Gravers often mention it: it’s like opinions keep floating in your mind, unprocessed.

This "blasphemous" talk you’ll get to hear, might seem like something trivial, but there are a few things to consider here. First, realise that all the things that come at you cannot be dealt with properly. Before GD I was totally immune for other peoples opinions, not out of principle or pride, but out of an understanding of what opinions are, what their deeper nature and place in reality is. You just listen to what people say, determine the value of it, use what you can, discard the rest. Easy! A natural process. But now I was in chaos and unable to see things in the bigger perspective, unable to adequately handle the world of ideas. Frustrating! Secondly, the human being is (for a very important part) led, defined, driven by MEANING, so be conscious of the importance of getting the right information. This will allow you to overcome the personal aspects of this disease, by providing you with the tools to give everything the CORRECT meaning (once your brain’s normal processes are back on track). It are the hard scientific facts, and the raw, personal, unedited, concrete stories of other people, that will make you realise that everything you have/are experiencing is the NORMAL reaction of the human organism to thyroid shit. Plain and simple. You have to get your mind to grasp what it has all been about, that your complaints were real & justified (this can take a while, especially if your entire surrounding has -passively- tried to convince you otherwise, plus: normal thought processes are handicapped during GD, so the right information might take a while to sink in, produce effect/meaning). How to do that? Research, read, communicate with Gravers, read, reread (some people truly have a way with words, and it can be very relieving to see your exact feelings, experiences written down by someone else; it helps to understand)… Use the internet. Be patient. Persevere.

In respone, you will learn not to heed any attention to advice. I always thought of honesty and real emotions as central aspects of my ideals, but GD made it impossible: my heart was getting seriously damaged, so after a while I made the decission to put my heart in a vault, for safekeeping, untill I would get out of this mess. You’ll become a master in shielding, which lets you bare the numerous embarassing situations (the way this works is by making you numb, though, so this coin has two sides). You will need to develop an elephant skin for criticism: many Gravers will have a long period where they will seem to suck at life (while they’re fighting to actually keep it). Realising that the normal guidance, advice, criticism, doesn’t apply to your situation, this partially blocking of the outside world is the most rational thing you can do, considering the GD reality (best would be to have an informed and intelligent environment etc., but hey, if the docs don’t get you the right information, there’s just no chance anyone will understand). In doing this, you will be accused of pride, stubbornness, denial, egocentric tendensies, blindness, etc. In reality you are making a painfull & heartbraking (but necessairy) decision based on a sofisticated mental assessment of a complex situation, which for the most part resides in an invisible, untangible, vague, personal world. On top of that, you probably will not be able to execute the above decission in a diplomatic, tactful manner: it will be rudimentary, which means you will come across as rude, uninterested, spaced out,… and you won’t be able to explain. Before GD I highly believed that everything was explainable, that I could get through to anyone, no matter in what situation or how different they were (I even made mental understandings that would allow for approaching aliens in a meaningfull manner). But, as GD progressed, I remember realising one day I had reached the border: there were now so many things that I would have to take into account in my mental configuration (while my mind got more and more limits), that I couldn’t talk from my conscious heart anymore, couldn’t reach out anymore.

The kind of effects GD produces will get you the feeling it’s you against the world. You will vagely realise this, but the longer it lasts, the harder it will be to neutralise. You will spiral down and down, see doors getting shut, see your relationships lose meaning. Your ideas and thoughts will go through a gradual process of de-sofistication, of black-and-whitening. You will become a caricature of yourself. You can wave intellectual pleasures and emotional richness goodbye. You will lose depth and the connection with the atmosphere, smell of the world. Your experience of time will become altered: you’ll have an industrious sensation that everything is happening at the same time; there are no breaks. You will get more and more trouble being in the zone, feeling the groove. Your laughter becomes hollow, and parties stop being a party. Your ability to get inspired diminishes. You will lose your witty remarks, your empathic powers will decline, you will start to feel detached from people and things. The bars of your cell slowly appear. GD is almost invisible for outsiders: you’ll feel like shit inside, but you’ll often get the remark that "you look fine", or even "great!". Sharp contrasts, dubious moral situations, and apparent paradoxes are part of GD. Your world gets smaller and smaller and you’re too tired to think, too tired to have sex. You’re sick of the neverending fight and you can’t put things in perspective anymore. You’re so irritated and are making elephants out of mosquitos, and you KNOW it and the guilt cripples you.

Your previously so understandible feelings and thoughts get vague, untill you can’t figure out what the fuck you’re feeling or thinking anymore. You’ll be torn by contrasting and vague thoughts and emotions. Your thoughts lose their flexibility and become rusted. You’ll face hundreds of embarassing situations. Your muscles get weak, your endurance falters, your ball-coordination starts to fail, you get clumsy, and you start to suck at sport. You get frustrated at your inability to play with ideas. After so many years, my world was so drained of ideas and understanding, that I saw myself compelled to base some of my talk and behaviour on vague notions of politically correct ideas, even though I always had been a prominent opponent of stereotypes. You’ll have trouble putting yourself in the shoes of other people, and you have to keep yourself from talking shit, empty words, and lashing out. Your heart will be suppressed more and more. You’ll catch your brain using stereotypes in order to get a minimal understanding of situations and people. You’ll avoid discussions, ’cause you’re an artist no more in that field. You can’t feel true love anymore, because underlying, vague thoughts and doubts get in the way. You don’t know what you want or like anymore. You have great difficulty making (good) decisions. The chronic boredom and chronic powerlessness will cause chronic frustration, and then apathy. You will lose perspective: it’s like you are with your nose up close to a tree, where you can see the lines in the bark, but can’t see the tree itself, let alone the forest. You are running marathons of foul play that are beyond Rambo and Conan. You will receive lots of blows below the waistline, so wear a jockstrap (the shield).

[Don’t be startled by reading all this: this doesn’t happen overnight. It will take years before you hit rock-bottom. Also, it’s an accumulated list of low points: it might almost feel like it’s all happening at the same time, but this is due to your hampered experience of things (no end, no climax, no ‘conclusions’). Above that, you will not be in ‘hell-hell’ for an extended period of time: it goes up and down. On every up you’ll ask yourself: “Man, was it really thát bad? Maybe I was a bit overreacting in my judgement.” And every low point that follows you’re convinced: “Oh yeah, it’s really thát bad! Don’t forget that!” This cycle can go on for a little while …

My guess is that you now either feel relieved by realising you’re not alone in what you are experiencing, or that there’s somebody who’s had it even worse (and recovered); or you hadn’t had it this bad yet, but can understand that GD will bring you there in the long run, and take your recovery more serious. If you’re reading this, you already had your diagnosis, so things will probably only get better from here on.]

When I was eighteen, I jumped out of a plane (fulfilling an old dream): I thought that would wake me up. It turned out to be a very depressing moment: I felt nothing, no excitement, no joy, no fear. Just staring and emptiness (not the enlightenment kind, but the kind of emptiness that makes you wanna scream). Later I crashed my car, flunked two years of college, and did all sorts of distorted things. I got into a fight and broke my wrist, in a way that shouldn’t have broken it: "Thyrotoxicosis increases bone turnover. (…) Among patients who have been thyrotoxic from GD, there is an increased risk for fracture." (Endocrinology and metabolism clinics of North America, Thyrotoxicosis, Vol. 27, nr. 1, March 1998). (that fracture hurt for years after, and further prevented me from playing sports). I was constantly wandering around, questioning my behaviour, but couldn’t find the answers. I thought my head was going to explode, I couldn’t fulfil my dreams, no matter how I tried. I couldn’t plan my life anymore. Many times I asked myself: how did it get to this point, how did I came here, this wasnt the plan at all! Eventually I thought it time for heavy measurements, and traveled to Asia, to try to find my lost soul. I roamed about for a few months, and eventually got my diagnosis in South America. Diagnosis is the only thing that will stop your downfall (you CANNOT beat the chemicals). And you’d better get it sooner than later. The more distance from your previous, true life/self, the more things will start building up, the more everything gets worse. And then, when its all over, you’re left with a serious image-problem: there’s obvious difficulty in trying to explain "Hey man, it wasn’t me, I swear, it was because of my thyroid poisoning" -"Riiiight, riiiight…" It’s one of those stories where you have but two options: you communicate it in it’s entirety, or you shut up about it, and take the blame. There’s hardly an in between.

I’m telling all this to show the less obvious impact GD can have on one’s life. Almost everything that happened those years would not have happened if GD hadn’t crossed my path. I deeply knew who I was and had unkillable confidence in my abbilities and what direction I wanted to go with my life. I had my convictions about friendship, love, life and death, the whole picture figured out. But then came GD… It affects the core of your world (you), so it’s obvious that it’s going to affect every little thing of your life. In that respect, its not the Midas’ touch, but the Graves’ touch.

"With regard to cognitive functioning [with Graves Disease], respondents reported a significant decline in memory, attention, planning, and overall productivity from the time period 2 years prior to Graves symptoms onset to the period when hyperthyroid. (…) Cognitive impairment with attention, memory and planning brought on by GD can appear as early as two years before other symptoms and signs." (Stern, 1996) "The results presented here indicate that impaired well-being and the neuropsychological performance observed in hyperthyroidism are not completely attenuated for at least the first two and a half years" (Boomer, 1990).

What this is saying: your intellectual capacities will/might diminish gradually (and the quality of your life with it) for as early as two and a half years before other symptoms occur. This was the case in my journey: when my symptoms were getting quite noticeable (it had gradually gotten worse for two years by then, but now I was experiencing obvious exhaustion, somewhat camouflaged by restlesness) I asked for a thorough bloodtest. The results then showed normal TSH (I checked those old results when I was properly diagnosed; T3 & T4 weren’t checked then). At that time they said they didn’t find anything, but I insisted that something was wrong, that I was feeling so tired, and they then said (probably just to give me something) my blood might show indications of a very mild Pfeiffers’ Disease. So all I could do was wait, take some vitamines maybe. Months went by, kept being tired and fucked up, got all sorts of vague little physical ailments,…

Several years later, just before I got thé diagnosis, I was again misdiagnosed (twice, actually): I had a new bloodtest, and the first doctor that saw the results, said I had Hepatitis (a few days later, the same bloodresults díd get me the correct diagnosis). And so the story goes… Thus, when you suspect a thyroid disease, I advise you to also let your antibodies be checked: TSH (& T3, T4) levels might not be the first to show signs of change. I don’t know if it will then show in the antibody levels (I’m no doctor), but I got a sneeking suspicion… Keep in mind that the cause of this disease and the function of the antibodies are not well understood. Especially if your family history shows thyroid problems, demand that all possible parameters be checked. My mother and her sisters, my grandmother and great-grandfather all have/had thyroid problems. You would think then that I’d have a pretty good chance of someone figuring out my enigma sooner than later. However, my relatives all had Hashimotos’ disease (and thus, HYPOthyroidism). Hypothyroidism is usually earlier detected because of the disastrous fatigue. When you have hyperthyroidism, your restlessness will mask your tiredness.

"The vast majority of patients with hyperthyroidism, certainly including those with Graves’ hyperthyroidism, meet criteria for some psychiatric disorders. A few patients may not meet these criteria but they are probably not free of mental symptoms such as tension, anxiety or depression.
Psychiatric disorders and mental symptoms are common features of hyperthyroidism. In hyperthyroidism, increased β-adrenergic activity accounts for many physical and mental symptoms. Depression, (hypo)mania and anxiety disorders are the most frequent psychiatric findings in patients with hyperthyroidism. However, mechanisms other than hyperthyroidism, including the automimmune process per se and ophthalmopathy, should also be considered as factors affecting mental state. A substantial proportion of patients with hyperthyroidism have psychiatric disorders or mental symptoms and decreased quality of life even after succesful treatment of their hyperthyroidism. (…) A substantial proportion of patients have an altered mental state even after succesful treatment of hyperthyroidism, suggesting that mechanisms other than hyperthyroidism, including the Graves autoimmune process per se and ophtalmopathy, may also be involved. (Bunevicius & Prange, 2006)

Avoid "bad" psychiatrists like the plague. If you can find one who’s realistic and wise, (s)he can be a very helpful guide on the GD-road. However, a continuing flow of quality information during your recovery might be as helpful/enlightening. Continuous study will allow your brain to be it’s own guide. You will learn a lot, not only things that are directly related to GD. A lot of what you’ll pick up during GD, can be extrapolated to the "normal life", so its not an entirely useless time. However, depending how long GD has affected you, an outsider with a sense of perspective can be a valuable partner. After all, perspective is one of the things GD drains, and something you absolutely need. I was really baffled seeing how my cosmopolitan & sophisticated worldview gradually transformed into a flat, boring, 2D piece of shit. Other Gravers have put it this way: your world gets really small. Also, considering that "hyperthyroidism can precipitate or cause virtually any form of psychiatric condition" (Arem, 1999) (yeah, if you have it long enough, it’s like an encyclopedic Who’s Who in the world of mental jokes; so besides very tough and at the highest level of suck, GD can also be very interesting), he can fill you up with knowledge about some of the inner experiences GD is pressing on you, and provide you with context and perspective. After all, it’s his/her field of study.

[In that respect, I got a tip to all the psychs. If you are a natural in what you do, and you’re in for some experimenting: try living on too much thyroid hormone for a few years/months! When you’re on too much thyroid, you will experience all those things, while still being conscious about what you are experiencing + having studied it all, you’ll be able to receive everything in it’s respective theoretical jacket. You will get an incredible amount of insight in the human mind. Keep in mind that the real thing still has a few significant differences, not in the least that you KNOW you’re on too much thyroid hormones… Caution: stay away from this experiment if you got "issues", and are not deeply aware of who and what you are. Thoroughly study GD before you embark on this road.

In the same respect, I got a tip to all the "Buddhas" out there. If you think you’ve figured it all out: try living on too much thyroid hormone for a few years/months! You’ll see how dependent you are on your hardware, and how ’emptyness’ differs from ’emptyness’. In my humble, sketchy understanding, real emptyness/fullness sprouts from a coming together and magnetisation of broad structures of ideas, understandings, and is thus definitely not empty in it’s roots.]

You might also need a psych for brain-meds, depending on the seriousness of GD. What I’m talking about here are SSRIs. If you see what mental symptoms they counter, it’s pretty obvious. Part of the reason, I believe, that so many ex-Gravers have residual complaints after "succesfull" treatment, is that they should also have been treated with SSRIs (Sipralexa – some GD patients advice it, as do I). I’m no doctor, though. But, if you’re looking for answers, this might be one of them. I started taking it a few months ago, and it definitely improved my intellectual capabilities & made me more in control. In the end, it’s fairly logical: this illness alters concentrations of certain chemicals in your brain, so chemicals to counter these effects need to be seriously considered as well (besides thyroid meds). So get a good psych, with whom you can communicate well, whom you feel you can trust. (S)he has the knowledge about the meds and co, you have the knowledge about what you feel, experience. Connect the two. If you don’t like the (wo)man, for WHATEVER reason, go to another one; there are plenty around, some good, some bad, some really good, some quite bad. The best is if (s)he knows the actual GD experience in its totality, not just the different mental issues that are associated with it.

I would also like to point out a possible connection with major depression disorder. This seams to be relevant when you’ve had a thyroid disorder for a long time. It might be part of the reason why SSRIs work for some/many thyroid patients. You will not get out of this disorder by say, sporting to create more endorphine & get a sense of achievement, or working at the quality of your relationships, etc. Only meds will help here. This is not ‘depression’ as it is ‘generally’ understood; in that respect, the name of the disorder is misleading and stigmatising (you seriously can’t help it…). It’s not just like feeling a little down because your life is a bit sucky at the moment, or your girlfriend broke up, and you just have to get over it; it’s not content related, but hardware related. Of course, there might be periods where both overlap. Nevertheless, doctors dealing with thyroid disorders should be aware of this. However, I’M NO DOCTOR, so I honestly don’t know, it’s more a question than a statement.

[Starvee44]

#1071704

(continues from above)

Returning to the subject of quackery: besides the quasi-quacks I spoke of a few alineas before, there are also real quacks, e.g. http://www.youtube.com/watch?v=iXXOhIpxaJM. Sounds too good to be true? It definetely is! Don’t fall for it, it’s 100% pure fraud. (If you’re not convinced, check out the similar approach the different quacks use: http://www.gravesremedy.com/?gclid=CPCl … 3godK0kX2A, http://www.thehypothyroidismsolution.co … 3god4mkC3g). Your level of streetwisdom will probably/might be low, depending on how hard/long Graves is/has been screwing you, so it can be difficult to determine the value of certain people and information. Let me just be very clear about this: there is nothing vital the "capitalist pharmaceutical industry" is consciously keeping secret, to keep you sick so you will keep buying medicines, etc. "They" are like us, we are like them: all individual people, born in the same world. There – is – no – conspiracy. Period. (Note that yes, not everything that happens in the pharmaceutical world is 100% genuine, but that’s the case for a lot of things). Can you see that Gravers are excellent targets for medical quacks? I would even say: one of the most perfect prey they’re ever gonna encounter.

You can, of course, do certain things to SUPPORT your treatment: healthy diet, no tobacco, no drugs (bad trips will be the only result anyway), a good eye mask, a strong (prescription) vitamine cure, relaxing massages, yoga, herbs, thee,… Whatever. See what works for you. Oh, and try to avoid stress (frustrating advice to give to a Graver, but there are stresses you CAN avoid, e.g. leave on time to catch a train, so you don’t have to rush!).

There is nothing to be ashamed about (though I advise you to be discrete: GD is not the kind of thing you want to include in your daily conversations, so try not to ramble on about it – GD can cause excessive talking, and when your whole world resides around your illness, it’s like the only subject you feel any familiarity with). You need the wider perspective (which will produce itself slowly, as your mind rebuilds itself; this will take time) to understand what "just" happened, what that rollercoaster was. When you keep bombarding yourself with the right information, your mind will slowly adjust your worldview, and you will slowly fall back into place.

Thus, the ingredients for succes: proper treatment & guidance, knowledgeable doctors, support, a large quantity of quality information, patience, faith in revalidation. There might be times when you have no more hope, or your only hope is that you’ll get hope again. Let me tell you this then (again, to make sure you get it): no matter how dark it can go, you WILL be able to come back. You might be in for a long fight, though…

Not everybody will experience the full monty of GD; a lot depends on the age of onset, the fastness of correct diagnosis (always months, sometimes years, during which it will gradually become worse, and your life will slowly slip through your fingers), the commitment & knowledge (dare I add, wisdom?) (I certainly do) of your doctors, the access to quality information, etc. What I want to say, is that there ARE stories that are NOT so extreme (the lucky Luces & Lucas).

"Bearing in mind these aspects of the illness, it is surprising that the psychological and social impact of hyperthyroidism has received so little attention" (Jadresic, 1990). This is really surprising, actually, considering the many revealing scientific articles – for an excellent overview: http://gravesdiseasetimbennie.com – that make clear this disease is HARD-CORE.

The main thing I want to underline is that it is really incredibly sad (& actually just plain ridiculous, from a certain point of view) that this disease is too often so badly handled & underestimated. More effort should be put into getting the patient back to his former (mental) health. The emotional and intellectual powers are of the utmost importance for someones life (besides fysical health), so this issue must be tackled head-on, in a smarter, more realistic, wiser, more comprehensive way. There is a lot of room for improvement.

Doctors: be pro-active. Your GD-patients are not in the best position to assess their own situation properly, make the best decisions, communicate properly, or deal with you in a diplomatic manner (which they are conscious of & can cause them to hold back). When you first see them, chances are some of them are struggling to keep it together, and are not in that room with you. Also, consider the stigma that’s associated with mental health, and the fact that GD patients are more prone to feelings like shame and guilt. When YOU do not come over the bridge to provide them with that essential information, but instead dissmiss their complaints, you’re cutting off (yet another) important helpline. Once GD-patients do start figuring it out then, in spite of what you might have been implying by not giving it the proper attention, they’re still not in the best position to research GD for themselves.

There was a time when I was in the midst of my research, and I was slowly getting out of the coma. I finally started getting through to my mother how serious this disease was, that I really tried my hardest, but… We then went to the endo and I tried to talk to him about it. He gave me a dubious look, and said, literally: "these complaints can’t come from the thyroid, ’cause your thyroid levels are OK now". I had even diminished my complaints, because I was a bit ashamed and still somewhat uncertain about them. Plus, my vocal abilities weren’t that great, I couldn’t talk calmly about it and I hated that. I also had to restrain myself because I knew I would easily lash out when it came to this subject. It was also politically incorrect to go against his ideas: he was almost on retirement, so he had a lot of knowledge and experience. I had already tried to convince him before, so I didn’t want to drag on about it, because I saw it was just of no use, and I didnt want to undermine being on good terms, because I still needn’t him to do his best for me, so…

He also didn’t give any attention to the fact I had been running around with Graves for 6 years before being diagnosed. Like that wasn’t important (I often thought: "man, it would be so much less hard if a doctor properly informed my family"). He didn’t ask about it, so I brought it up myself after a few appointments: I tried to make clear that this seemed like a big thing to me (and it is), but got no meaningfull response. Anyway, one of my points is that it’s not easy for patients to go in against their doctor’s point of view. GD hasn’t got a consciousness, but after a while, when your ways out get blocked one after another, it surely gets the feel of a conspiracy…

Doctors: communicate well with the other doctors and be sure to provide a thorough follow-up. You can underestimate this disease and let the patient suffer unnecessary, or you can realise the complexity, act accordingly, and take the opportunity to shine as a medic. Provide your patients with (plenty) good information. Guide them to GD-communities, online and offline. Talk to your patients, and let them feel you understand. Thoroughly acknowledge their complaints. Consider brain-meds: there are different kinds available that might apply to thyroid patients’ lingering complaints, but we, patients, don’t know squat about this. This means we are utterly dependent on your knowledge. Please don’t disappoint us, and be conscious about your importance and the responsibility that comes with it.

“A full understanding of the causes of mental disability in Graves’ disease awaits a full description of the effects on neural tissue of thyroid hormones as well as of the underlying autoimmune process.” (Bunevicius, Velickiene & Prange, 2005)
“There are no systematic data on the general efficacy of psychotropic drugs in the treatment of mental symptoms in patients with hyperthyroidism, although many reports describe the use of individual agents. The prevalence of residual psychological complaints in patients who have been succesfully treated for hyperthyroidism, an association between mental symptoms and thyroid automimmune disease, as well as correlations between scores on psychometric scales and serum TSH-R antibody concentrations, suggest that the automimmune process itself may play a role in the presentation of mental symptoms and psychiatric disorders in Graves’ disease. Persistent stimulation of TSH-Rs may be involved. In Graves’ disease, the TSH-R gives rise to antibodies and in some patients these antibodies persist after restoration of euthyroidism. The cerebral cortex and hippocampus are rich in TSH-Rs. Antibody stimulation of these brain receptors may result in increased local production of triiodothyronine. Ophtalmopathy is an expression of Graves’ disease that extends beyond the thyroid gland. It contributes to psychiatric morbodity, probably through the psychosocial consequences of changed appearance. However, the autoimmune process may also play a role in the presentation of mental symptoms whether or not ophtalmopathy is present.” (Bunevicius & Prange, 2006)

More research is needed and/or more awareness about the research that has already been done. What are the consequences of a (prolonged) state of hyperthyroidism? What chemicals does hyperthyroidism/GD affect in the mind, and what are the best psychotropic chemicals to fix this? Come on, medical community, this is an essential issue! There is a common cause, so there must be one (or several) psychotropic drug that will specifically help the brain-consequences of GD. The mental fog is a killer of quality life. “Signs of intellectual impairment indicating irreversible brain dysfunction after thyrotoxicosis thus seem to be a frequent, although hitherto not generally recognized, finding.” (Acta Endocrinologica, 1986, Vol 112, Issue 2, 185-191). “Cross-sectional studies suggest that there may be long-term effects on cognitive function and affective modulation following hyperthyroidism.” (Thomsen, Kvist, Andersen, Kessing, 2005, Clinical study – Increased risk of affective disorder following hospitalisation with hyperthyroidism, a register based study)
I’m telling you, something important is escaping many doctor’s attention…

Also, one important variable that is mostly overlooked in clinical studies, is how long the patients had been suffering from thyroid problems before diagnosis. I remember those first years that my train was still basicly on the track, albeit wobbling, but if the poisoning had been stopped there, it would have been much easier to recover. Once your train derails, its a different story… Also, depending on how long it has been, and the age of onset, it can take a while for the patient to pinpoint the period where it all began. When I was on my recovery, I found myself methodically reconstructing the past on big calendars. And I started to remember… Things were coming back, riddles solved. Everything finally became clear now. One thing I would also like to mention: when GD progresses, it’s like you get blocked from your convictions. You’re left pondering (life-)questions for which you had already found your answers before, but you’re now unable to activate these. And then, when you finally get out of the coma, your old ideas and answers will slowly arise from their hibernation, free to use again. Like Superman is finally getting his rightfull powers back…

An anecdote about the onset of GD: the only possible reason I can imagine, is one(/several times) where I drank (way) too much alcohol, and had two of the most painfull hours of my life. I remember lying in the bushes at a party, and being in such terrible, agonizing pain from the overdose of alcohol, that I thought to myself: "This situation must be comparable with a woman giving birth: the pain is so terrible, but you cannot run from it, you can’t make it go away, you have to live every second of it". It’s about after this time that everything started happening. Thyroid problems often start in women after they gave birth, most likely due to the enormous amount of physical stress the body has endured. Think about it. There were no other stressors in my life before GD: I was happy, open, free, sharp, and felt great in my skin.

I would also like to mention the thyroid hormone levels. With GD your levels get distorted. Doctors use a margin were your levels should fall into. E.g. normal T4 is somewhere between 9,0 and 19,0 pmol/L (different labs/countries can use different numbers). This means that the optimal thyroid levels are not the same for every body. There’s a big difference between 9 and 19, and yet, you will be declared cured, if you have either one of them. Now reread this: "No, these complaints cannot come from your thyroid, because they are within the normal range". (No further comments, Your Honour…).

When you have lingering complaints, are they only the result of the long hypertyroid state, or are they (also) caused by an artificial thyroid level that isn’t appropriate to your body? It’s all very close related to the the phenomenom of subclinical thyrotoxicos and subclinical hypothyroidism. Consider this research: "Italian researchers set out to assess the cognitive and psychological function in a group of people who were recently diagnosed as mildly hypothyroid, and who had minor symptoms. After treatment with levothyroxine, the patients studied generally had improved verbal fluence, less depression, and improved mood, leading the researchers to conclude that treatment of asymptomatic mild hypothyroidism is recommended, both to re-set hormonal levels and, particularly in older subjects, to protect the brain against the potential risk of cognitive and psychological dysfunction." (MARY SHOMON, Mild Hypothyroidism and its Effect on Cognitive Status, Bono G, et. al., "Cognitive and affective status in mild hypothyroidism and interactions with l-thyroxine treatment." Acta Neurol Scand. 2004 Jul;110). "Thyroxine treatment of patients with mild hypothyroidism has been shown in most, but not all, clinical trials to lower atherogenic lipid levels and relieve certain somatic and neuropsychiatric symptoms. (…) The high prevalence of mild hyperthyroidism, particularly in older woman, and it’s subtle clinical presentation have led some authorities to recommend a low threshold for case-finding or routine population screening for the disorder." (AYALA, DANESE & LADENSON, 2000, When to treat mild hypothyroidism)

So there’s the problem: how can you determin what thyroid levels are good for you specifically? The only way to do this is to ensure all other things are taken care of (so no other variables can attribute to how you feel, which is very difficult, and all the more harder if you haven’t felt healthy for many years), and then you’ll have to experiment with the dosage, see what level makes you feel best. If you haven’t got a willing endo, this is difficult. On top of that, the effect of changing meds will take some weeks to take effect. So it’s a slow and painstaking process, and a difficult balance. I would also like to see some (scientific) information about things that sometimes get mentioned by Gravers, like adrenal fatigue and T3 supplements. What’s the (real) deal with these things?

By the way, a new, very good source for research on the patient experience are the bulletin board forums that have sprung up on the internet the last years. Analyse those, and you’ll get further proof, for many of the things I’ve been saying and implying, if you don’t believe me. You’ll also get a few good ideas for further research.

“In conclusion, it is our impression that a comprehensive approach to the problem of thyrotoxicosis has much to offer in the further understanding of the syndrome, and is of vital consequence in improving management and treatment.” (Mandelbrote & Wittkower, 1955)
It appears this quote from half a century ago still stands…

I’ll conclude on a more personal note:
Seven years after the onset of symptoms, I made a difficult decission. I cut the last people that were left out of my life. That really sucked and broke my heart, but relationships became pointless. I tried for so many years, because I had always loved people and life (before GD…); but after so long, I had to accept the devastating fact that it was impossible to build up something meaningfull. I didn’t know if I was ever going to heal, hadn’t had the proper information, the only thing I knew was: I can’t do it anymore. I’m sick of feeling like shit and not being myself. I had to give up people, because I was completely empty. I couldn’t explain my situation or know when/if I was gonna be OK, so I disappeared from everybodies radar without any real explanation. I thought it best for them to consider me lost and forget about me. I would explain later, when it was all over… So I blocked any approaches from my old friends (hard thing to do) and went into monk-mode, to be able to deal with this disease, to research, to rest, to fight, and trusted that my time would come again, someday. I hope it doesn’t get to that point for you, because that was really tough. It trully was the greatest challenge of my life, but I made it, eventually. Nine hard years have gone by. In the end, you lose a lot of time, but once your mind & heart are surfacing again, you start growing faster and faster, while you process all the experiences that have been lingering in your brain, and finally squeeze out all their inherent knowledge and wisdom. It’s just one of the things that can happen in a human’s life… Learn from it, leave it behind, and get on with your life, give it your all, again, but this time with results. And your dreams might come through after all…

One last advise: don’t expect the Fat Lady to sing soon, you’ll be disappointed. She’ll have you waiting for her. Longing. Craving… Sing, Lady, sing! There will be many times where you will cry victory prematurely (when you’ve been deep down the rabbit hole for a long time, you might have forgotten what the sky looks like + this will happen on a yo-yo high), which will further undermine your credibility, so try to keep your mouth shut.

Hopefully this movie/text will bring greater understanding for all involved, touch a few snares, and pull some tears from your eyes.

Good luck, strength, perseverence, energy, rest, insight, clarity, support, friends, understanding, financial safety net, … to all afflicted with this off-the-scale challenge.

Starvee44 – May 7th, 2009

PS: I tried to make this account as objective as possible, attempted to see my own story in the light of the scientific literature & other peoples experiences, in order to make some general assumptions about GD and how it’s generaly handled by patients and doctors. However, it’s impossible to give a detailed, unflawed, perfect account of everything about GD: it’s just too much, too complex, too varied, too chaotic, too personal. Moreover, the brains analytical capabilities aren’t exactly in good condition during "the catastrophe"… That’s why any feedback from you will be very much appreciated: every comment adds value, information, context to the image this video/text gives about GD. I’ll use an analogy to elaborate this. After reading a (non-fiction, scientific) book, you will get greater understanding of the subject by also checking out the reviews: these are written by specialists on the same subject, and they finetune, adjust, revise, shed new light, … on the viewpoint & information ONE man compiled. When numerous qualified sources give their views on the same subject, it produces a total package of information that is of greater quality than the info of just one source. The same goes for comments written by you – the numerous qualified GD-sources. All stages of GD contain information; basicly anything you say, will add context.

One of the most difficult things in dealing with this disease, is the lack of information, not only for yourself, but also for the people close to you. If they don’t understand, you will lose your home base – your place for support – somewhere throughout the war. You will get isolated, frustrated, misunderstood, misjudged, unrecognized, bombarded with "good advice" & speeches. Things will become pretty awquard. Your relationships will be put under great stress, and in the end, they will fall apart, become bitter, break. It is one of the reasons I made this video, and wrote this text: I wanted an informative, clear, fast way to provide a layman with an accurate squetch of GD. YOU can enhance this squetch. Add your pencil stroke. Help yourself, help others, by adding your (pos. and/or neg.) experiences. It’s just so sad, that the right information is available in the scientific literature, but that many doctors don’t have the full picture to connect the dots, in order to understand how severely this disease can affect the modern human condition, and to properly guide the patient. It doesn’t have to be like that! Share your experiences here, make GD visible, make the facts perceptible, change the future. Information has great power, and you can provide it anonymously. What country are you from? When were you diagnosed? Comment, and add colour.

Hopefully this symbiosis of video, text & comments will make it easier for Gravers and their environment, make GD more concrete & tangible. It’s like that woman who took her husband to a GD meeting: he then realised that there were many people who experienced the same "funny" problems. Everything she’d been saying, was more true than he imagined: so many people can’t just be wrong or overreacting. Many GD patients will experience that their doctors won’t recognise certain complaints in a serious manner. In the doctors office, it’s your word (no medical diplomas + erratic, chaotic, foggy, hostile) against your doctors (man with diplomas): sometimes it can be very difficult to get through to him. But if you can show that those complaints are widespread, that the difficulty of getting them recognised is widespread, then you’ve proven that there is a real, structural problem(s). So let us make the evidence even more overwhelming, because it’s obviously not enough. Don’t stay invisible, comment something, anything, and give notice to the fact that many struggle more than should be allowed, that many DO lack information & proper medical guidance, that the medical community in general DOESN’T appear to have a good understanding of what this disease entangles, that it IS really hard, that there ARE a gazillion side-effects on so many aspects of your life, that you ARE greatly obstructed in living a fulfilling life, that it DOES consume an incredible amount of time, and that a more comprehensive approach is craved for.
I tried to provide as much essential core-information into this short text as I could: if you got GD, it’s hard to read a lot and find the right information on your own. I didn’t feel qualified to provide very technical information about GD. In principle, you should feel relaxed to leave the technical details to your doctor, but in reality many GD-patients feel compelled to go study these things, try out unscientific methods, fall into the trap of quacks, seek guidance from unqualified individuals, etc. because they still feel bad/tired/foggy, even if they are declared "cured" by their doctors (*cough* structural problem *cough*).

[Ems]

#1071705

Starvee – the videos are spectacular – I will comment on You Tube as well.. I have suffered from Graves disease over the last 7 plus years -! The videos touched my heart in such an enormous way as did your post – I felt total relief in reading your post to know you felt the way I did.. The way you have written is incredible you have a real skill!
Thank you I will share your videos with all my family and friends – the music was so many songs I have chosen to play over and over particularly the ones when struggling with Graves.. Thanks Emmaxx

[Ems]

#1071706

Hi Starvee
Hope your going well… I showed the videos to my parents and they have been invaluable.. they had no idea that affects the whole person ( the mind) like it does.. I have just been away to Sydney Australia so will look forward to talking with them more about the videos. My mum and Dad had me when they were young ( I am 35) so alot of the music you used are my Dads favourite songs that he often plays( funnily enough I have often thought he has Graves disease!!!) maybe this will open up a way to talk about it a bit more…so thanks again. I am feeling good the only new difficulty i am experiencing at the moment is eye twitching which I have had in the past but not for years. I am stll on PTU 2 tabs am and night eventhough my levels were in the " normal range".. Did you ever worry about your Endo taking your levels too low, and not in the right range for you? or did you have a good open relationship where you could discuss this?
Anyway hope you are feeling good – I am yet to share the videos with my sister, its ironic that so many in my family have such busy rushed lives, them finding the time to stop and watch seems difficult – maybe thats where the Graves came from!!! thanks Emx

[Starvee44]

#1071707

Hi Ems,

I’m so glad you had good results with the videos! And that you are feeling ok…

As for eye twitching: yeah, I’ve got it too… It’s amusing to my little sister ” title=”Smile” /> but not so much to me hehe, at least I make her smile

As for the normal range: I think I can safely say, we all have or will have that worry: are these the right levels for me, personally? It’s a drag, and don’t expect to get any relevant feedback from this from your endo, unless he’s really knowleadgeable.
Today I actually had an appointment with my new endo (my previous one retired…): man, that was frustrating. I wont go into it, but I’m changing. I found a good one via thyroid top doctors: http://www.thyroid-info.com/topdrs/

You should know, endocrinologists are also the doctors for diabetes patients, and mostly even more so. It have found it difficult to found out if an endocrinologist is really knowledgeable about thyroids: mostly you wont get a meaningfull answer by just asking him/her, cause they will always say yes. You should have connections, or even better is if you find a doctor who has published about complex thyroid issues. E.g. the one I’m going to go next time: I found two articles he recently published with the following titles that say a lot about his experience:
a) Thyroid Insuficiency. Is Thyroxine the Only Valuable Drug?
b) Thyroid Insuficiency. Is TSH Measurement the Only Diagnostic Tool?

When you find a doctor who publishes that kind of stuff, you know he’s good. That are things other doctors would laugh away, if you come to them with studies about such vague, difficult topics…

Take care, and good luck with your sister! Starvee

[Wolfmother]

#1071708

WOW! You said it all and yes I did have tears after reading certain lines. And, thankyou for addressing the mental health aspect. I was one of the unlucky ones that developed a series of psychosis attacks, it took two admissions to two different mental hospitals for them to diagnose me with Graves!!! I’m no longer on pychotropic meds as my thyroid has been ‘stabilised’ (well for the time being, touch wood). I think its time the psychiatrists did some serious reading and research too! They really didnt have much of a clue in regards to my disorder and in the finish misdiagnosed me. It took my General Practitioner one look to see I wasnt psychotic and no longer needed the medications that the psychiatrists wanted me to take for a lifetime!!!

In some ways it was easier dealing with the physical limitations of Graves (which were extreme for me), I found the mental health side so embarrassing, demeaning and isolating. I’m still coming to terms with these hospitalisations…I still feel great anger towards the medicos who misdiagnosed me on first contact. This did untold damage to me, my children, my partner and my family. I lost two jobs and moved house twice whilst in the thyrotoxic state and finished up on the other side of the city – as far away from my family and friends as I could get – I too isolated myself. I realise now that this was a big mistake – but given that all my life was to become over the coming two years (and still ongoing) it was a blessing for them – they didnt have to listen to me moan about Graves and my non-existent life.

Thankyou for expressing so much in that post, I appreciate you sharing with us! And, thanks for listening to me moan – at least I’m in the right circle to be doing it!!! LOL

Where can I access this video? Is this on youtube? I’ll have a look anyway until you reply.

[Wolfmother]

#1071709

WOW HOW COOL!! Just saw your youtube video! You’ve captured it all in art, what a fantastic piece of work! Not only are you able to verbalise it all you’ve managed to put it into pictures – well done!

[Starvee44]

#1071710

Hi Wolfmother, took me a while to reply, but I’ve been busy…

Thanks for sharing your own story, I always like reading other peoples experiences. You’ve had it really tough… I’ve read many similar stories! I’m glad you’re better now

You say that it was easier dealing with the physicial limitations, even when they’re extreme, than the mental issues. Well, here’s a scoop: we all agree! ” title=”Very Happy” /> It’s the same for everyone: the mental stuff is the hardest: it’s invisibile, embarrising, difficult to understand, it affects your personality, heck, it affects everything in your life… It’s a rush, a rollercoaster, that keeps going and going…

As for coming to terms with it: what helped for me was reading other peoples stories, and the hardcore science articles, that state everything you have experienced. It helps to understand what happened, to put it in the right perspective, so you see that there is nothing to be ashamed about, nothing to feel guilty about: you are truly excused for all that happened and all that didden happen: the friendships you couldn’t develop, the women you couldn’t love, the wisdom and insights you couldn’t further develop, the countries you couldn’t travel to, the goals you couldn’t properly pursue… (those were the most important things for me personally)

All who encounter graves, encounter those symptoms and all the difficulties that come with them (in one degree or another). It’s science, it’s chemistry, it’s the human reaction to thyroid intoxication. Nothing more, nothing less.

I found that, when time passed, my body and mind slowly realigned themselves: thyroid hormone levels need to be leveled, and then healing can begin, then there is the atmosphere for you body and mind to reset, to come into balance again. It takes a lot of time though, but just as you slowly evolved into this disease, you will slowly evolve out of it. What helped tremendously, for me, was reading and reading about it: peoples stories and topnotch science articles.

Which brings me to the following: for the past three years, I’ve been researching and reading, when I had the time and the energy. I thus far have compiled about 500 pages of interesting and revealing peoples stories, and excerpts from science articles, books, brochures, etc. It took me a looong time to compile and sift out the not so interesting stuff and really only include the quality materials, but it’s almost done. I’ll finish it in a few months, and share it with all who wants it.

The more I healed, the more I remembered from what I read, and my mind started to put everything in the right perspective, slowly slowly, using the information I found.

It really does make a difference to get properly informed, and make yourself realize the nature of Graves’ disease. It makes a BIG difference.

Take care

[LBKT]

#1071711

Hi Starvee44, I’m newly diagnosed hyperthyroid, haven’t been Grave’s tested yet, but have the bulgy eyes that seem to be getting bigger so far just about 2 weeks from starting an anti-thyroid med. I think one eye may not close all the way while sleeping. I work 40 hours a week on a computer and have begun wearing glasses for the first time in my life to help with the blurred vision that started just before my eyes bulged. I use moisturizing eye drops 4 or so times a day. Below you suggest ‘a good eye mask, a strong (prescription) vitamine cure… herbs’. I’m hoping you’ll share specifically what you’d consider a good eye mask. I tried a cheap gel eye sleep mask but I didn’t think it worked well. Is there a specific overnight eye mask you’d recommend? Just a sleep mask? A ‘beauty’ mask that’s said to help with ‘puffiness’ or circles under the eyes? Or a mask that includes some kind of moisture for the eye balls themselves? I’m also hoping you’ll share specifically what you’d consider a helpful ‘strong vitamin cure’ and ‘herbs’. I’m not having any luck with on-line searches for these things, getting suggestions from my doctors, health food or beauty supply stores, or finding any specific info in the Grave’s books I’ve started reading. I’ll definitely keep searching but any specific suggestions you have to offer would be greatly appeciated. LBKT

[Starvee44]

#1071712

Hi LBKT,

I have so far always been ably to get my eyes fully closed at night. Nonetheless, I’ve had a lot of problems with my eyes, and have tried out quite a few eye masks. The I use most often, is the DreamTime Inner Peace Eye Pillow (you can get it via drugstore.com, or via amazon: http://www.amazon.com/DreamTime-Inner-P … 684&sr=8-7). Not only does it smell really good, it’s also soft, and I like the weight on my eyes.

I also use a pack for cold: http://www.drugstore.com/products/prod. … atid=12203. Put it in the fridge (in a plastic bag), and it’s cold, special feeling for your eyes. I use it on occasion.

Also, try a heat pack. I also use mine on occaision. They have a gel in them, so you can heat them in the microwave. Especially pleasant in the winter.

There are many otehr eye masks I haven’t tried, e.g. the ones you find on drugstore:
http://www.drugstore.com/search/search_ … x=0&Go.y=0
If you live in the US, the costs are bearably, but since I live in Europe, the shipping costs are very heavy, so haven’t tried as many as I would like. Other ones that look promising, and next on my list (some day, when I got cash…): DreamTime Breathe Easy Face Pillow, and FTS-save on shipping-Moist Heat Therapy Warming Eye Pillow – 174-101-06 (name on amazon, can’t include too much urls–policy of this forum).

I was once at a massage therapist, who used an eye pillow that was mightily heavy, just the right weight, that had a very good effect on my eyes. However, haven’t been able to find the same eye-pillow… If you see a good weight pillow, try it. The best weight pillow I foudn was the Dreamtime described above, but the one the massage therapist used was way better.

As for vitamines and herbs, I would just implying that you should use what works for you, if you have something. I haven’t been ably to experiment much with vitamin cures, but there are a few things worth mentioning. When you do try out stuff, you should be on a stable medication dose, in order to tell what effects come from what. Mary Shomon lists a few supplements she uses: http://www.thyroid-info.com/articles/me … abinet.htm (among them, a vitamine cure, named Fatigued to Fantastic! :p Haven’t tried it yet, but surely want to)
Always consult your doctor. Hopefully he’s supportive in your quest for improvement. That helps.

When I was hyperthryoid, I went to my general practitioner with complaints of tiredness. He gave me trhe name of an over the counter vitamine cure, which did nothing. I returned, and this time he precribed me a special vitamine cure (not available over the counter, you must have a prescription), which worked wonders. Had tons of energy for as long as I took it. So maybe ask your general practitioner, cause I don’t now a name of the vitamine cure (that general practitioner is out of practice, so I can’t ask him), only that it’s not over the counter…

The best place I found for researching, finding and buying supplements, I found, is iHerb.com. They have the best prices, very good costumer service, and a lot of review for specific supplements from people who bought it, which might guide you a little…

That’s all I can tell you, hope it could be of some help.

Regards, Starvee

[LBKT]

#1071713

Thank you so much Starvee44!! I hadn’t found anything yet on my own so reading all your suggestions below is really wonderful. Thank you again, LBKT

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