AnonymousJuly 3, 1998 at 4:17 pmPost count: 93172
I was diagnosed with Graves’ Disease this past February and am having an extremely difficult time with coping.
I’ve noticed that the slightest thing can send me into a depression so deep that I feel like I can’t possibly
get out. My thyroid levels have been within the normal range for the last 2 months, but I still experience most
of the symptoms. Does this ever get better? Now they want to totally destroy my entire thyroid with RAI on the
21st of this month. Does anyone know if this will help? It sounds kind of funny to me that they would destroy
the whole thing if it is being controlled by the medication. I feel like I’m all alone in this and would appreciate
anyone to talk with. So far, I’ve hit dead ends everywhere I turn. This has effected my entire life, both proffessionally
and personally. At least I’m finally able to walk and do the dishes. Anyone who has any advice, please contact me!
April at firstname.lastname@example.org.AnonymousJuly 3, 1998 at 6:16 pmPost count: 93172
April, If you aren’t sure about RAI, then don’t have it done. Don’t let your doctors rush you one way or the other. It took a while for my symtoms to calm down once I started on the medications. Tell your doc about it and insist that he do something to help you with them. Remember, you’re the customer. If you’re not happy with the info, find a second opinion!!AnonymousJuly 3, 1998 at 6:52 pmPost count: 93172
Dear Wanda & April:
Well,hello to the both of you and welcome to our BB if your new. I don’t dare ask how are you doing as I read the two postings. I really feel for the both of you and wish I could give the both of you’s a big hug,ya sound like you both could use one,so with that note I hope the both of you will stick around and give this BB a chance.April I especially can identify myself with your feelings as I have been there and done that for sure,I remember not even being able to hold my toothbrush up in my hand to brush my teeth I would use the counter to hold my arms,and had to use a bed-pan because the bathroom thing took too long to get there and could hardly walk anyways,also could not do much of anything for many years,was in a wheel chair also no one knew what was wrong with me so I was treated like a nut-case for sure,this went on for about 7-8 yrs before my eyes started to swell and thats when they diagnosed me,so trust me April your not alone there are many
horror stories out there. As for the RAI treatments,I had it and I really believe knowledge is your best friend right now,get that under your belt and your well on your way,I believe that once you learn about it then you will be able to make the decision and feel ok about which way you are going to go with.(treatment) I can tell you an answer for your one question and that is that they want to destroy the throid because it is alot more safer for you to be under-active then be over-active that is much more dangerous,and with being under that is quite manageable for anyone,where as with the over-active phrase you can have many other serious troubles like with your heart for beginners.I took the RAI and it did the trick for my problem with my thyroid and did not make me go under-active either,so I was lucky as most do go under afterwards.I hope I have been of some help to the both of you and if Im wrong in any of my information someone will post me I hope,but think I have it all right,take care of yourselfs and don’t feel so alone you guys I know where your coming from and I admitt it’s no fun but we can’t give in to this damn disease thats for sure also. hang in there girls it does get better,as for you hubby problems I can’t help you as I would just tell you to KICK HIM TO THE CURB so you might be better off not listening to me there Wanda but good luck to you sweety as NO ONE DESERVES THAT TREATMENT FROM THEIR SPOUSES,HANG IN WANDA I’m praying for you,little warrior barbAnonymousJuly 3, 1998 at 9:07 pmPost count: 93172
some input from a true warrior
deciding from rai or meds is a hard
one and only YOUR decision will rule
but im afraid that emotional swings
are something that goes with this
disease and wont be corrected
by which route you decide to take
they are both good healing but
one or the other may not fix
SteveAnonymousJuly 4, 1998 at 12:31 amPost count: 93172
Hey out there,
Just want to let those of you who have posted about the emotional roller coaster that you are not alone. I was diagnosed two months ago, was started on ATDs. Prior to diagnosis and then during the initial phase of treatment I started having high anxiety and panic attacks and then I went hypo and within a matter of a day I went from feeling good to feeling the worst I have ever felt. Couldn’t get out of bed I was so depressed, spontaneous crying which for me is very unusual. We adjusted my ATD dose and now I am feeling better. I told my endocrinologist early on about the mental manifestations and he referred me to a psychiatrist. I am now on benzodiazepines and undergoing cognitive therapy which has been very helpful. I can honestly say that I feel very close to normal. I just had an appointment with my endocrinologist and I grilled him about many things one of which was my reaction to this disease. He said that it is apparent that for me (but maybe not the average Graves patient) that moderate thyroid levels abnormalities (mine were never that far out of whack) cause mental manifestations. First, he reassured me that he doubts that I will have any permanent changes in my psyche or mental capacity because of Graves. That once all of the hormone levels even out that I should feel normal. George Bush had Graves disease and a friend of mine had a father with Graves Disease who is a neurosurgeon so I don’t think that Graves is debilitating emotionally in the long term (at least that is what the doc told me; there may be others out there who disagree), and he said that if it turns out that the Graves did bring out a primary psychiatric disorder (anxiety or depression) that these states are treatable with medications so DON’T LOSE HOPE. He said that I may have bad days but ultimately, I will feel normal again and that it should be indefinate provided that we can get the dosages right. In terms of the ATDs vs. RAI, he said that with regard to keeping the thyroid hormone levels consistent, it is much easier to do the RAI and replace hormone then it is to try to control an overactive thyroid with ATDs. He said that for some people it is impossible to find an ATD dose the works and that the only option is RAI if you want any normalcy back to your life. Personally, I seem to have evened out on the ATDs but am fully aware that the emotional roller coaster may start again any day if the current dose turns out not to be appropriate (it takes a few weeks for dosage changes to take effect) at which point we will adjust again. I would not hesitate to take RAI if we can’t find the right dose. I continue to get psychiatric treatment during this adjustment phase and am not ashamed at all about it. I should say that I trust this doctor (Harvard-trained, if that matters to anyone) and believe what he is telling me. Just my two cents worth. I would like to hear disagreements or people who have had different experiences.
GeorgeAnonymousJuly 4, 1998 at 1:13 amPost count: 93172
I just wanted to say how good it is that you are taking
such good control of your health care. You sound like you
are an informed consumer too.
I am not working this summer so I have no stress from work.
Now stress seems to be a trigger for my Fibromyalgia stuff.
Do you have any neat tips to share on stress management
that you might have learned recently? I only ask because
you mentioned the anxiety and depression.
Michele B.AnonymousJuly 4, 1998 at 10:05 amPost count: 93172
I hope you are feeling a little better today. Your comment on
depression “so deep that I feel like I can’t possibly get out.” really hit
a chord with me. I used to have days I called “black days”, days I felt
so down but just couldn’t climb back up. Anyway, I know its dumped
on a lot in the press, but I finally asked for a referral to a psychiatrist
and tried prozac. Coincidentally (or not) my sister got put one of the other
new anti-depressants at the same time. Both of us got lots of relief.
Of course I still had some occasional bad days while I took medication,
being “normal” includes a bad day now and then, but the BIG difference
was that they passed and I did not feel like I was in a hole I couldn’t climb out of!
Sounds like you have good reason to feel down from dealing with all your graves
symptoms, but I encourage you to consider asking your doctor, if you
have not already, about some assistance with your depression symptoms. Coping
with Graves is enough. (If you are already taking something to help, perhaps those meds need adjusting).
Sorry so long, hope the world seems brighter to you soon!
CaseyAnonymousJuly 4, 1998 at 10:33 amPost count: 93172
I’m sorry you are feeling so crumby these days. Yes, the emotional swings do settle down. Right now, you are still sick. Sick people feel depressed, lethargic. I know your levels have evened out, but it takes time for the cells and body systems themselves to get back to normal. Thyroid hormone affects almost all of the various systems in the body, including brain chemistry. This whole recovery thing is a process, and it doesn’t happen overnight, unfortunately. We ALL wish that it would.
As far as your question about RAI is concerned, my first comment is a suggestion that you make sure you understand the three treatment options, and the plusses and minusses of each one. There are, in addition, medical reasons why some of us should do one of the treatments over another — sometimes that is surgery, sometimes antithyroid drugs stand a good chance of making us well again; a lot of times, though, doctors think RAI may work to make us healthy the fastest. It is safe, and in the vast majority of cases (around 85% or 90% depending upon which sources you read) eliminates the problem of being hyperthyroid with one treatment. You need to know why your doctor is recommending RAI to YOU, though, and see if those reasons sound appropriate to you.
That said, I had RAI in November, 1996, and I feel terrific these days. It did take a while for my hormone levels to balance out on replacement hormone, but even during those days I felt better than I had while hyperthyroid OR on antithyroid drugs.
I really hope you start feeling better soon. I know things are hard right now, but it will get better. Just hang in there.
Bobbi — Bobbi1436@AOL.comAnonymousJuly 4, 1998 at 11:56 amPost count: 93172
thinking what i last
wrote gee yea the swings
get better when blood is
in normal range you might
get the odd day but i dont
think pickin rai between meds
will make a difference because they
both do the same thing but than again
rai is faster i hope i make sence im
in a hypo time at the moment
steveAnonymousJuly 4, 1998 at 4:01 pmPost count: 93172
I have not found anything magical to help control stress and
anxiety. From what I have read and talked about with my therapist
stress is not all bad. Some stress is good (eustress) because it
forces us to get things done. I read somewhere that many professional
speakers still get anxious and stressed before speaking and that
they think it helps them perform better, gives them an edge, keeps
them on their toes etc so eliminating all stress is not the ultimate
goal. But too much stress or the wrong kind of stress (distress) is
what can wreak havoc on life. It seems that part of the the reason
different people may react to the same stressor is all in how one
interprets the stressor. I have learned through cognitive therapy that I tend
to catastrophosize everything. So my therapist has tried to encourage
me to force myself to think of the most likely outcome in a given
situation not the worst (which is what I tend to do). For example,
about six months ago I had an arrhythmia in my heart and I felt a
little lightheaded, went to the ER recovered, nothing since. But ever
since then I have been completely keyed up because I would think
to myself what if I were driving along, my heart went into an arrhythmia,
I pass out, hit a tree a die. Completely catastrophosizing, right?
But unlikely. So he has tried to get me to alter my thought patterns
hoping that I will react to stressful and anxiety provoking situations
differently in the future. He recommended some books for this sort of thing. I don’t
have the names right here, but I will post them when I get home.
Personally, I think that exercise is about the best thing anyone can
do to decrease stress and anxiety. I always feel significantly better
after exercising. I have also started setting some time aside for myself
each day to read take a bath or do whatever. There is a book out now
called “Don’t Sweat the Small Stuff, and Its all Small Stuff” and it has
helped me put some things in perspective. No magic formulas, just some
common sense ideas to help decrease stress and anxiety.
All the best,
GeorgeAnonymousJuly 4, 1998 at 9:48 pmPost count: 93172
Thank you for your insight. So there is no new magical
answer. Darn! Somehow I think I know what to do but it
is the doing it that falls under the catagory of “change”.
Now that is something that can probably be achieved with
just doing it- practice! I gotta pick up a copy of that
book you mentioned, “Don’t Sweat the Small Stuff, and It’s
All Small Stuff”. I have had a small intro to this book
before. I have noticed for me that after I try to change
something then I am not sure of myself and end up going
back to my old ways of thinking. Then I get more stressed
out! <G> Then I have to start all over again! Maybe I am
just a slow learner!
Michele B.AnonymousJuly 6, 1998 at 9:51 pmPost count: 93172
Emotional swings unfortunately come with the graves’ territory.
When I was first diagnosed with graves I actually did not have
that many mood swings. I first noticed my irrational behavior
when I went hypo. I took RAI twice and the second time I was
so distraught that I was actually suicidal. That was when I decided
to take an antidepressant and see a therapist. I am so glad that
I decided to take the antidepressant because in just a few short
weeks I felt much much better. The psychologist has helped to
ground me. She has helped me through the most trying time of my
life while dealing with a chronic illness from hell! I can’t
recommend anything, I can only relate what has worked for me.
I hope you feel better soon. I feel much better than I have in
a very long time.
regards…CarolynAnonymousJuly 15, 1998 at 9:14 amPost count: 93172
I happened upon the book “Don’t Sweat The Small Stuff” by
Michael Mantell on the real audio under the self books
on the internet. I am listening to it now. Up to the
assertive section! It sure is pretty interesting! So far
it is getting a big Wow from me. Thanks for reminding me
about this book.
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