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  • Anonymous
    Post count: 93172

    I have just finished reading through all the messages on this board and am so amazed at the support that is available! Never once during my 6 years of treatment for Graves have I been told that emotional changes were to be expected. All I was told was that the RAI would make me hypothyroid and that hypothyroid was easily treatable. This has just not proven to be the case at all for me. All of my care has been within the military system and I do not always see the same doctor. I am just so comforted to read that other people have had these same depressive symptoms. I have often wondered if I was going crazy. I do not understand how the Endocrinologist never told me this. He even told me I should go for counseling at one point. Maybe there is hope after all! Two weeks ago I started taking .025 more and I believe it is helping me to feel better already. My doctor believes in keeping the dose as low as possible. Why would this be? Do some people abuse thyroid? Isn’t there such a thing as “high normal”, especially in someone like me who feels so lousy? I surely think it is time to look for another Endocrinologist. Reading all these comments makes me feel that proper treatment is out there. Any comments so very welcome!!!
    Debbie

    Anonymous
    Post count: 93172

    Hi Debbie,

    I have been taking .15 for the past 15 years or so and I feel that I need more but my doctor says my range is in normal. I think I may be a person who would do better at the highest range of normal possible. I am going to tell my doctor to refer me to an endocrinologist and I am going to see if I can have my elthyroxine increased. I feel tired and lack the energy I had when I first started taking elthyroxine. I have gained weight and sometimes I wonder if I am depressed. When I went through the operation and the RAL I was 16 and I am 39 now. I had absolutely no knowledge about what was happening to me, but probably as much as some of the quacks I saw.
    I read all the bulletins too and I realize I have to get medical help. The bulletins haave made me realize that people with this problem go through specific things, many of which I thought were due to other problems.
    Kathy

    Anonymous
    Post count: 93172

    For Kathy & Debbie Harris…I, too, appreciate this outlet for collecting other’s experiences with this disease, and to receive the validation of all these crazy things attributable to our chemistries, it’s sort of a relief. I also was wondering, as was another person afflicted with this….What about libido? Mine vanished prior to knowlege of my diagnosis, and Iseem to have lost that old pzaz. I know it’s a personal question, but after all it’s the ’90’s, so women, what do you say? What do the doctors say about this? I take aan antidepressant called deseryl (aka: trazodone) primarily for sleep. But I’ve also heard of utilizing paxill, another antidepressant, with a low dose valium
    I’m still afraid of getting more overweight during the hypo adjusting phase. Does this seem to happen to everyone? I wonder how long I’ve been running around with this…? Till next time..We will get past this in time.

    Rachel

    Anonymous
    Post count: 93172

    Greetings. I am new to this group and hope to share and gather some
    info. I was diagnosed with Graves disease six years ago, and finally
    treated with radioactive iodine in 1991. It took about six months to
    reach the hypothyroid state that required replacement with synthroid.
    Ever since this time, I have suffered with moderate to severe
    depression, mood swings, and general hypothyroid symptoms. My blood
    level is considered stable even though I have required adjustments
    yearly. I keep pleading with the Endocrinologist to increase my dosage
    but he prefers to keep it at the lowest possible amount and insists
    that my depression has nothing to do with my thyroid level. My latest
    checkup was last month, at which time the TSH and T4 levels were off
    enough to require another increase and I am now up to .15mg Synthroid.
    I have consulted a medical-minded Psychiatrist who recommends that I
    find another Endocrinologist. Now I ask, has anyone else had similar
    experiences with post Graves disease treatment? Should thyroid be so
    difficult to adjust and fluctuate for years after the RAI? I also
    wonder if the antidepressants I tried at various times could have any
    effect on the thyroid hormone? (Prozac, Depakote, Effexor) The
    Psychiatrist does not want to treat the Graves disease and the
    Endcrinologist does not want to treat what he see as psychiatric
    symptoms. Is this usual? I would appreciate any sharing of similar
    experiences. Thanks!

    Anonymous
    Post count: 93172

    Hi Rachel,
    Thank you for your response! Yes, I also have the lack of libido and can pimpoint it back to 6 years ago when I went into the hypothyroid state. Of course, this is also a symptom of depression which I am diagnosed as having. It is just so hard to tell which symptoms are caused by what. I think our female bodies are very sensitive to all these changes, chemical and hormonal. I just spoke with my Endocrinologist(male) this morning. He still maintains that depression symptoms are not affected my the small fluctuations in TSH and T4, as long as they are in the normal range. His position is that Graves disease does not have any influence on the emotions and this is why I go to a female Psychiatrist to treat the depression. She, on the other hand, insists that my emotional troubles, including the reduced libido, are due to my thyroid imbalance. So who to believe? Do you recieve the antidepressants from your Endo? Does he think that Graves has any psychiatric complications such as you have had to need the antidepressants and sleep med? I also took Desyrel until recently and do not know if that drug may have been the culprit. I know it made me drowsy. God bless!

    Anonymous
    Post count: 93172

    Depending on the amount of radioactive iodine you are given, you have to be a little more careful. The biggest problem is samll children and small pets. The only thing I have ever heard of is two pet birds (who nestled to the owner’s necks) died. To be on the safe side, let the other partner read the bedtime stories, give the baths, etc. for perhaps two nights. Long ago, people were hospitalized, and the room sealed off. That was for very high levels of radiation, typically for cancer. My endocrinologist used to simply hand the RAI to his patients, while others are more like the story of the lead-lined room with technicians trying to run out as soon as possible. They are exposed to muchmore radiation that the occassional RAI patient. I had nine appointments the day I had mine, left at lunch, drove over to the hospital, and was back for my next appointment. I has clinically hypo within two weeks, but they “simply” put me on levothyroxine, and things continued to roll along. They have been trying to fine-tune for a long time, but everyone on my team works together, and they allow me to be the captain. Good luck.

    Anonymous
    Post count: 93172

    Had my “atomic cocktail” 15 years ago and subsequent thyroid replacement (Synthroid) and have never regretted my choice. It certainly seemed to beat the alternatives. Although I have suffered bouts of “hypo”, dosage changes, depression, weight gain, eye problems, etc, etc. I still generally feel so much better than I did at the time I was diagnosed. I seriously thought I was having some kind of a breakdown. Fortunately, I had understanding friends, family and coworkers. It’s a wonder anyone could stand me. The most debilitating problem I’ve personally dealt with since RAI is depression, initially triggered (I believe) by my weight gain. Being treated with antidepressants helps a lot, but I still do hate the way I look! Though this disease is not pleasant, there really are so many worse things that could have happened to me. Life is still good!

    Anonymous
    Post count: 93172

    I had RAI 6 years ago, and later discovered that the other options had not been clearly explained to me (I didn’t know then that there was a chance of remission on the drug route). The doctor was horrible, and since then I’ve felt like the problems I’ve had — hair loss, eyes, never would have happened if I’d gone the drug route. I just felt so cheated that I didn’t get to make an informed decision. And you’re not in the best state of mind to make such huge decisions anyway. My sister went the drug route and has been in remission and hasn’t had any problems, so that’s reinforced my bad feelings. But, reading all of your experiences, I feel a little better about having done RAI. I was so afraid that it was really a bad choice and only I had chosen this route. I’m happy that so many of you feel it was the right choice for you. It makes me feel better. And the actual process was no big deal (if you call killing part of your body that!). I felt better soon, and did not feel any worse at any time. It’s a tough decision and I still wonder what I would have done, if I’d know all the facts. KarenG

    Anonymous
    Post count: 93172

    I’m considering doing the RAI as I combat my second does of hyperactive thyroid in 5 years. The endocrinologist is gung-ho. Too gung-ho for my liking (after all I’m very attached to my thyroid.) In my research I came across some articles that post RAI may reveal an underlying case of depression. So, I’m wondering, is the active thyroid supressing the depression. Is the depression stimulating the thyroid, and maybe treating the depression, could alleviate the thyroid problem, or am I grasping at straws?

    Any response

    Anonymous
    Post count: 93172

    The depression is not causing the hyperactive thyroid. But, you are also right to ask lots of questions and not to do anything you don’t feel comfortable with!

    I am post RAI and am on an anti-depressant and it seems to be working for me. If you want to, e-mail me and I will give you more details!

    Mitakuye Oyasin
    Val

    Anonymous
    Post count: 93172

    I don’t know much about the articles you’ve read, Mary. But even if the over-active thyroid HAS masked clinical depression conditions, it strikes me that that is no reason not to get the thyroid problem fixed. I suppose my motto is “Don’t Borrow Trouble”. Worrying about something like this is like paying interest on a debt that we may never incur. Right now you have a very real problem to deal with — i.e. too much thyroid hormone — and you need to determine how best to treat that particular problem.

    I wish you good luck. I know this isn’t an easy time for you.

    Bobbi

    Anonymous
    Post count: 93172

    Mary,

    While I was hyper I had depression too. I had RAI in April and I have had depression too but it seemed like a different kind of depression. It’s hard to explain but maybe others here know what I mean.

    I don’t think being hyper masks depression – being hyper causes all sorts of other problems including anxiety, nervousness, lack of attention span, and yes depression too for some of us.

    Just make sure you get your blood levels monitored very closely after RAI – my endo had me in every 3 weeks for the first coupleof months to check my levels.

    Good luck!

    Emily

    Anonymous
    Post count: 93172

    I was diagnosed with graves in 99 but due to anxiety I refused any treatments until May 2003. Since my RAI I have had awful depression and still have the anxiety to the point I rarely leave my house. I’m on so many meds to control the symptoms I feel like I’m going out of my mind. I take synthroid, zoloft for depression (which really doesn’t seem to help) clonazepam to help me sleep (also doesn’t really seem to work). Despite, or perhaps as a result of all this, I feel like a basket case. So many days I just cry and cry for no reason. I know this can be a result of out of wack thyroid levels but the doctors seem to want to take a wait and see approach. How long do I have to suffer like this before I find the light at the end of the tunnel. I almost wish I could just go back to before the RAI.

    Please Help
    c_brown_1979

    Anonymous
    Post count: 93172

    Have you tried to have a serious discussion with your doctor about the fact the medicines don’t seem to be helping you. There are different antideppessants out there that may beable to help you out. Also sometimes we need the help of a counselor, have you doctor refer you to one. You will be amazed at how much help they can be for us.

    Diane B On-Line Facilitator

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