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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 24 of 24. This is the beginning of the thread.
Posted by Bookgurl99 on June 24, 2002, at 14:35:21
Every day lately, I've been thinking about ways to kill myself.
I've never been like this before. But in the last 4 months, my cognition and memory have taken a sharp plunge. My symptoms? Trouble recognizing places I've been before, short-term memory virtually gone, concentration tremendously low, trouble finding words, slower CPU in general. My age? 26.
I've just been diagnosed with Hashimoto's thyroiditis, although I was being treated for low thyroid before. My fear is that I could have a rare comorbid condition, called Hashimoto's encephalopathy, which is where Hashi's antithyroid antibodies attack the brain instead of the thyroid. Most doctors have not heard of it, as there's only about 30 diagnosed cases in the U.S.
Don't get me wrong -- I'm not the kind of person who goes around thinking she has a rare illness. It's the symptoms that have caused me to consider this possibility.
Posted by IsoM on June 24, 2002, at 15:15:07
In reply to Feeling suicidal -- fearful of illness, posted by Bookgurl99 on June 24, 2002, at 14:35:21
Bookgurl, if it's any consolation, those are the symptoms I had when initially diagnosed. There were times when it was so bad, I felt like I was strangely caught between dimensions. I don't know how else to explain it. I knew I existed & was real but somehow nothing around me felt comletely real even though I was 'there'. I felt like I was someone who was both there & not there. I couldn't seem to hold on to any thought or idea to even explore it properly. Like I would be trying to figure out something simple & have it fade rapidly away like a dream does just as you wake up. The harder I tried to keep my thoughts rational, the more elusive they became.
I remember a few times (probably can remember them because it caused me such distress that it burned itself in my memory) where I was struggling to find a word & I'd start gesturing to imitate it (like a stabbing motion when I couldn't remember what a fork was called). In the middle of my gesturing, I'd forget what I was even trying to say any more. That was pathetic.
Hashimoto's encephalopathy also includes disorientation, psychosis, tremors, jerks in the muscles & lack of coordination, partial paralysis on the right side (don't know why the right side though), & speech problems. In young people & adolescents, there can even be seizures & hallucinations. If you have those symptoms (or some of them, it can seem like a stroke too) & your antibody levels are very high, then it's worth getting checked out. Proper treatment can reverse symptoms.
I don't mean to belittle your worries, but even you probably realise the likelihood of having it is slim. That's not to say, don't check it out but to reassure you & tell you not to worry too much. The fact that you could type out your post & others too is really a good sign that your mental powers & coordination are plenty good still & that you don't have it. Check out some more on this site on it. It's got quite a bit about it & links to PubMed & other sites:
http://www.thyroid-info.com/articles/hashimotos-encephalopathy.htm
Posted by Penny on June 24, 2002, at 21:35:28
In reply to Feeling suicidal -- fearful of illness, posted by Bookgurl99 on June 24, 2002, at 14:35:21
Bookgurl,
Thinking of you tonight. We are the same age...and I understand what you're going through. The IOP program seems to be working for me, and I see a bright spot after much darkness. Hoping it will last, and hoping you'll find yours.
Love, Penny
Posted by bookgurl99 on June 25, 2002, at 8:18:58
In reply to your illness... » Bookgurl99, posted by IsoM on June 24, 2002, at 15:15:07
IsoM, thanks for your post.
I did start everything off with a stroke-like episode; it seemed like suddenly I awoke and my short-term memory was gone, I couldn't find words, I moved very slowly. That lasted for 2 days, and I started improving. I went home for help, and my parents were in major denial. I was much worse 4 months ago. Now I have good days and bad days, usually 1 good day for 3-4 bad. "Bad" meaning more out of it.
>
> Hashimoto's encephalopathy also includes disorientation, psychosis, tremors, jerks in the muscles & lack of coordination, partial paralysis on the right side (don't know why the right side though), & speech problems. In young people & adolescents, there can even be seizures & hallucinations.I've also had muscle jerks (Though they could be caused by psych drugs), a couple of seizure-like jerks in my neck and arm (could be caused by psych drugs), and disorientation (could be thyroiditis?).
>The fact that you could type out your post & others too is really a good sign that your mental powers & coordination are plenty good still & that you don't have it. Check out some more on this site on it. It's got quite a bit about it & links to PubMed & other sites:
> http://www.thyroid-info.com/articles/hashimotos-encephalopathy.htmAnyways, thanks for your post -- and suggestion. I suspect that some people with H.E. are not as bad off, and could be caught early. BUT-- you're right; I don't see the dr. until next Tuesday and have to live until then.
The people I live around -- my parents, my girlfriend, etc. -- have all confirmed a change in me, an apparent loss of cognition. My parents hope it's from severe anxiety, although they admit that something in 'uncharted waters' could be happening. (Hopefully just Hashi's.)
Another big fear is that my mom (who's been on Prednisone for 20 years) was put on steroids around my age, and developed a severe autoimmune response to allergies; her throat literally closes in response to food allergies. So I guess I fear having to go on steroids to treat something -- even though I never worried about it before these symptoms showed up.
I miss being who I was.
Thanks for reassuring me, and for the link.
bookgurl99 (Elisa)
Posted by bookgurl99 on June 25, 2002, at 8:33:46
In reply to Re: Feeling suicidal -- fearful of illness, posted by Penny on June 24, 2002, at 21:35:28
Posted by bookgurl99 on June 25, 2002, at 8:51:57
In reply to your illness... » Bookgurl99, posted by IsoM on June 24, 2002, at 15:15:07
You know, IsoM, I was also trying to switch from one antidepressant (Serzone) to another (Luvox) when my symptoms started. I was doing a cross-taper. Was never able to get onto Luvox, or back to the original dose of Serzone (had become sensitized to it; it made me manic, gave me itchy throat, and heart palpitations). So I had to dumpt my AD pretty fast. I was also on a pretty low dose of armour thyroid and levoxyl at the time.
Wonder if because I was on Serzone for 2 years, and had an undertreated thyroid, if my body has been unable to overcome the withdrawal. Like, maybe it stopped doing for itself what the Serzone did, and hasn't been able to achieve equilibrium yet, and part of the result is cognitive failure.
Elisa
Posted by bookgurl99 on June 25, 2002, at 9:04:07
In reply to Re: Feeling suicidal -- fearful of illness, posted by Penny on June 24, 2002, at 21:35:28
Penny,
I had a dream that my younger sister attempted suicide. In my dream, I found her (still alive) and picked her up. I was like "I love you. I love you." I was carrying her to the phone to call for help when I woke up.
I think it's a sign that I don't really want to commit suicide. Maybe my sister stands for some aspect of myself that I don't want to have die --
Funny, 6 years ago, when I was last feeling suicidal, she had a dream that I had attempted to shoot myself in the head and ended up disabled. Her telling me about the dream -- it was in vivid detail, about my life afterwards, using a walker and having a bandage around my head, my boyfriend calling me 'towel-head' -- stopped me from attempting all consideration of killing myself at the time.
Maybe I should tell her about this one?
Anyways, have you had any weird dreams?
Posted by IsoM on June 25, 2002, at 11:50:42
In reply to Re: your illness... » Bookgurl99 » IsoM, posted by bookgurl99 on June 25, 2002, at 8:51:57
Bookgurl, I read your first answer & thought no wonder you're worrying about the encephalopathy. I would too in the same situation. But then I read your second answer back & figure only you would perhaps know the differences. When I stopped Paxil, even though I ended up taking another SSRI, Celexa, the withdrawal effects never did go away. Months later, I still had them so I went back on a low dose of Paxil along with the Celexa. It's only since I've started adrafinil that I was able to stop Paxil with NO after effects at all.
So it's possible that you may feel weird simply from stopping Luvox (which I also have taken & when stopped it felt horrible for months till I went on Paxil). Maybe the best way to judge is to figure out whether this is how you felt when you stopped your Luvox, or is there additional weird little symptoms too? When you get it checked with your doctor next week, please let us know how you are, okay?
Posted by bookgurl99 on June 25, 2002, at 12:30:22
In reply to Re: your illness... and your two new posts, posted by IsoM on June 25, 2002, at 11:50:42
You know what, though -- I was only on Luvox for 4 days; taking Luvox in the morning and Serzone at night. My doctor thought at the time that my symptoms could be related to the Luvox.
Posted by IsoM on June 25, 2002, at 12:34:59
In reply to Re: your illness... and your two new posts » IsoM, posted by bookgurl99 on June 25, 2002, at 12:30:22
Posted by bookgurl99 on June 25, 2002, at 12:39:56
In reply to Re: your illness... and your two new posts, posted by IsoM on June 25, 2002, at 11:50:42
Do you have OCD? You're on adrafinil?
Is this why you're so punctual about returning messages?
(Me, I'm avoiding my homework. :D)
I will post after visiting the M.D. next week -- I just pray that my doctors consider that this is not psychological. They act like _one_ psych dx (anxiety) will protect you from all subsequent illnesses, and assume that your symptoms are all just related to/caused by/treatable through treating that one thing. I wish it were so.
Posted by IsoM on June 25, 2002, at 18:03:47
In reply to Re: your dx? » IsoM, posted by bookgurl99 on June 25, 2002, at 12:39:56
Wish I was a bit more obsessive about things - I tend to let things slip too easily. Not OCD or even punctual in the least. More that when I sit down for a brief rest, I check the board. Some days, I will hardly use the computer. You just got lucky. :-)
Posted by bookgurl99 on June 27, 2002, at 23:14:33
In reply to Re: your dx? » IsoM » bookgurl99, posted by IsoM on June 25, 2002, at 18:03:47
IsoM,
Hey, I am feeling a lot more hopeful. I went to the web site you told me about and read about H.E. symptoms, some of which are similar to mine. I joined their list, and I exchanged emails with a woman who was diagnosed with H.E. at my age. She had a similar experience, with dr's not really understanding what was going on because she had been so smart to begin with that even 'brain damaged' her i.q. was normal. BUT they gave her a SPEC scan, which I haven't had, and that helped pinpoint the problem. Once she started treatment, she felt 90% back to normal in 6-8 weeks.
So, it's not what I would have wished for myself, but I'm starting to feel that I can get through this and live a fulfilling life despite illness.
Next week I'm going to the doctor with as much info on h.e. as I can bring with me; I'm also going to bring this woman's email message to me describing what she went through.
Thanks so much for listening,
bookgurl99
Posted by IsoM on June 28, 2002, at 1:21:27
In reply to Re: about potential of having h.e. , posted by bookgurl99 on June 27, 2002, at 23:14:33
I'm glad that you're feeling encouraged by 'talking' with this lady. Do let us know how things go when you see your doctor. It's good to discuss symptoms with someone who's actually had it.
Posted by bookgurl99 on July 1, 2002, at 19:59:53
In reply to Re: about potential of having h.e. » bookgurl99, posted by IsoM on June 28, 2002, at 1:21:27
> I'm glad that you're feeling encouraged by 'talking' with this lady. Do let us know how things go when you see your doctor. It's good to discuss symptoms with someone who's actually had it.
Well, I'm going to visit the endocrinologist tomorrow. I hope she considers my symptoms as _I_ report them. (Neuropsych testing shows me as 'normal,' despite the fact that sometimes I can't operate a laundry machine. People around me see the change, but I had a near-genius IQ before so I guess a decline would be hard to pick out.)Yesterday I wrote out plans for suicide, including date, time, place, method, and music I want played at my funeral. I am sure that the same mechanism that causes a decline in cognition is also contributing to this extreme depression. So I hope that the doctor listens to me, because I can't live and continue in decline like this. If I can be treated and start getting well, I will have a reason to live.
(My big fear, though, is that if I mention my suicidal desires I will be written off as a pych case -- no organic cause for my symptoms will be considered.)
Anyways, pray for me or whatever it is you do. I could use an open-minded, competent doctor tomorrow. :D
bookgurl99
Posted by Penny on July 4, 2002, at 17:49:18
In reply to going to doctor tomorrow!, posted by bookgurl99 on July 1, 2002, at 19:59:53
Bookgurl,
What did the doctor say?
Just wanted you to know that I'm thinking of you.
Penny
Posted by Bookgurl99 on July 4, 2002, at 20:40:59
In reply to What happened at the doctor's office? » bookgurl99, posted by Penny on July 4, 2002, at 17:49:18
> Bookgurl,
>
> What did the doctor say?
>
> Just wanted you to know that I'm thinking of you.
>
> PennyThe psychiatrist believes that I am having an organic problem that is contributing to memory problems. He basically said he's glad that they can help me deal with the anxiety of not being diagnosed yet, and said "If your diagnosis is a little outside the box, it will take longer to find out what's wrong."
The endocrinologist refused to consider that anything organic was wrong. She basically came in with fists flying, asking me why I was coming to see an endo when all I have is hashimoto's thyroiditis. I asked her about H.E. and she said she doesn't believe in it. (It was identified in 1966, so not all docs learned about it in school.)
I am now in the process of contacting a GP who is close to my family to see what help he can give me. I really think if I have a SPECT scan (which shows one's level of brain activity), doctors will be able to see the organic nature of my problem.
I have also contacted a doctor in Chicago who is a specialist on CNS-immune system interactions.My mother talked to me today about how there _are_ people with anxiety who believe that they have something horribly wrong with them. She believes that I am not one of them; that I have 'something wrong,' but pointed out that this is why doctors so far have explained my case mostly on a psychological basis.
It's been really hard to accept the whole ordeal, to realize that even with treatment I will probably always have a struggle with whatever is causing my symptoms. But I am coming to the point where I can be peaceful and hope that I will be one of the lucky people for whom treatment is successful.
On the downside: did not win the Powerball! Damn! I'd had a dream about playing the lottery, so I bought a ticket in real life. (eerie?)
Posted by coral on July 5, 2002, at 4:23:12
In reply to Re:It wasn't helpful., posted by Bookgurl99 on July 4, 2002, at 20:40:59
You might consider seeking out another endocrinologist. A friend of mine is the head of endocrinology at one of the top ten hospitals in the US and his position is that anyone with an endocrine problem should be evaluated by an endocrinologist and preferrably should have on-going care from one. Barring that, an annual review with full labs w/an endocrinologist is a minimum of responsible care. Your endo's response was like a dermatologist saying, "Oh, you have a skin disorder. Why on earth are you seeing me, a dermatologist?"
From first-hand experience, I can tell you that a screw-up in your endo system can have incredible repercussions - such as anxiety, depression, tachycardia --- the list is endless. Good luck!
Posted by Leighwit on July 9, 2002, at 19:45:41
In reply to Re:It wasn't helpful., posted by coral on July 5, 2002, at 4:23:12
> You might consider seeking out another endocrinologist. A friend of mine is the head of endocrinology at one of the top ten hospitals in the US and his position is that anyone with an endocrine problem should be evaluated by an endocrinologist and preferrably should have on-going care from one. Barring that, an annual review with full labs w/an endocrinologist is a minimum of responsible care. Your endo's response was like a dermatologist saying, "Oh, you have a skin disorder. Why on earth are you seeing me, a dermatologist?"
> From first-hand experience, I can tell you that a screw-up in your endo system can have incredible repercussions - such as anxiety, depression, tachycardia --- the list is endless. Good luck!_________________________________________________
Hi Bookgurl,
Having been treated by endocrinologists for most of my forty-four years, I don't quite see the problem with this one's performance. She may not have the best bedside manner (actually I prefer stellar credentials and competence over warm personalities ~ but I do understand the desire to find both) but at least she was upfront. I'd much prefer to know that she didn't believe in "H.E." than to receive some sort of pat on the head or placebo prescription and sent on my blithe and merry way.
You may very well want to get a second endocrinologist's opinion ~ but at least you got an honest & candid one from this particular doctor ~ something far too uncommon these days, IMO.
My best endo was one I saw for over twelve years. He was quite dry and to-the-point. A few patients I knew preferred other doctors in the clinic (because he was considered a "cold" personality. I grew to realize that his competence was far more important to me than his sometimes dismissive manner.) This one might have done a better job delivering her thoughts, but she's certainly done what you were paying her to do: deliver her professional opinion.
Anyway ~ I suggest that what matters are the doctor's credentials and reputation. How does she rate? What are the chances she's right? If you believe they are nil (or even 50/50 actually) you should certainly get a second opinion, but this time (assuming you didn't already) make sure you get it from the very best endocrinologist in your commutable area. You're a bright person (I've read a large number of your posts) so this will seem obvious to you ~ but sometimes when we're feeling crappy, even the obvious escapes us, eh? Find the very best endo and plan (plan is a key word) to weight the credibility of their diagnostic performance accordingly.
Major cities often have magazines (Chicago Magazine and The Washingtonian both do, for example) that publish an issue with a list of "Best Doctors" on an annual basis. Both of the two I listed use a surveys of the licensed medical community at large (doctors evaluating doctors.) I've found two doctors that way and have been very pleased. Too often when I merely "ask around" I find people referring others to doctors that they happen to "like" ("he's just a doll", or "she is so sweet") rather than those for which they have an informed, experienced opinion.
Hope you're feeling better,
laurie
Posted by Bookgurl99 on July 11, 2002, at 8:02:57
In reply to Re:It wasn't helpful., posted by Leighwit on July 9, 2002, at 19:45:41
You make a good point -- I'd definitely rather have a competent doctor than a 'nice' one. Hopefully the two skills would be married, but if not -- competence over kindness. :D
But if you had seen the way I was treated by the endo, you would think she was neither. I'm not going to go into detail, but she contradicted herself a couple of times and overall seemed to be struggling with an anger problem.
bookgurl99
Posted by Leighwit on July 11, 2002, at 9:56:25
In reply to Re:It wasn't helpful. » Leighwit, posted by Bookgurl99 on July 11, 2002, at 8:02:57
Sounds like you made a good decision to walk (or did you run?) away from that one!
laurie
> You make a good point -- I'd definitely rather have a competent doctor than a 'nice' one. Hopefully the two skills would be married, but if not -- competence over kindness. :D
>
> But if you had seen the way I was treated by the endo, you would think she was neither. I'm not going to go into detail, but she contradicted herself a couple of times and overall seemed to be struggling with an anger problem.
>
> bookgurl99
Posted by Bookgurl99 on July 11, 2002, at 16:06:57
In reply to Re: your dx? » IsoM » bookgurl99, posted by IsoM on June 25, 2002, at 18:03:47
I visited the doctor today with info on h.e. My mom came to confirm that tho' I appear normal in the office, I have been 'slipping,' not knowing things that I normally would, not recognizing things that I normally would.
The doc gathered the info on h.e. that I had. He is gathering info on the tests I've had done already.
I can tell that he is sincerely trying to help, still considering that my symptoms are psychological, but looking into this other thing too.
It's not good news to have an organic problem, but to finally be listened to after 4 mos of being treated nutso is great -- it makes me feel like maybe I can get well and have a reason to live after all.
bookgurl99
Posted by Penny on July 11, 2002, at 19:24:30
In reply to good news!, posted by Bookgurl99 on July 11, 2002, at 16:06:57
Posted by bookgurl99 on October 3, 2002, at 21:37:56
In reply to Re: about potential of having h.e. » bookgurl99, posted by IsoM on June 28, 2002, at 1:21:27
Ok, I finally visited a neuro-immunologist in Chicago this week.
We discussed my symptoms at length, he gave me a brief neuro exam, and pondered what I could be experiencing. He asked numerous questions.
His conclusion? He believed me, and said "I'm sorry, you don't get reflexes like yours just from anxiety. It's real." (Reflexes referring to the neuro test where they hit your knees with a rubber mallet and suchlike.)
I'm so relieved to have met a dr. who believes me. He believes that I either have an autoimmune cerebritis, or severe, painless migraines (which I understand can be similar to seizures in their effects at times). Either way, there is an effective treatment and hope for me in the future.
Thanks for your support and listening,
bookgurl99
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