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high thyroid antibodies and psychiatric symptoms

I was wondering if someone could shed some light on my problem. It all started 6 months ago with depression, crying and anxiety attacks. I lost 12 pounds, lots of hair and had a racing pulse and ravenous hunger. In the past 2 months I have hardly slept due to strange sensations in my arms and feel like I'm going crazy. I was put in a psychiatric hospital for 10 days and placed on antipsychotics and tranquillisers, which I'm still on. I have had thryroid tests and all labs are in range, except that I have elevated TPO antibodies. My doctor doesn't want to start me on thyroid meds because she is worried that they will aggravate my symptoms. I just don't know what to do - my life has completely fallen apart, I can't work, sleep, concentrate or even follow simple conversations. I am in a constant state of panic. Does anyone have any experience with this kind of thing? I feel like I'm slowly dying. Please help!
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Avatar universal
Dear Jenny,

Thanks so much for your words of support. You're completely right when you say that I must be feeling a mix of emotions - hope, fear, apprehension...But hope predominates. I have to believe that there is some way out of this mess, that I can get back to a normal life. It sounds silly, but my birthday is in just under a month and I couldn't bear to be this unwell then. I don't expect to be 100%, or even 80%. I would settle for 20 or 30 at the moment. I just want to feel happy and peaceful, even if I am still under the weather.

Thank you so much for thinking of me. You are a rock!

Julia x
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Avatar universal
Hi, Julia--

I was famous for leaving a second message on an answering machine or putting a postscript on a letter long before my thyroid gland's struggles interfered with my ability to stay organized, so this postscript is "situation normal" for me!

While visiting the loo before starting the trip home, something occurred to me. As you get organized for your Wednesday afternoon discussion, you might make a special note in your mind--and maybe on paper, too--to be sure the doctor understands accurately what you are describing when you tell her about having a ravenous appetite. If I am guessing correctly, you have experienced what I described in a letter to you--being as hungry as if you had been digging ditches all day. At those times, I have consumed a number of calories that seemed far out of proportion to what my actual bodily needs should have been.

If your appetite-related experience has been similar, I think it will be important that the doctor understand it accurately. I know that it can be a clear-cut sign of an endocrine problem, in that it is a classic diabetes symptom, and I think that it is common in hyperthyroidism, too. Even if the doctor has never heard of it in relation to hypothyroidism, the huge-appetite symptom might help her rule out a scary disease such as lupus, whose one appetite-related symptom seems to be a poor appetite.

My concern is that hypothyroidism often causes depression, and depression not uncommonly causes a person to overeat. It is a different kind of overeating, though. People who are depressed and respond by overeating are using food as a self-comforting technique; they are not necessarily any hungrier than normal. You can tell that here, too, I am concerned that the doctor NOT mis-categorize what you describe.

Okay, now I really am off to get ready for my errand-running day. By the time I log on again, it will be very early on Wednesday morning in Melburne. I will check in with you then, and I know that I shall be thinking of you in the interim.

With warmest best wishes,
Jenny
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Avatar universal
Hi, Julia--

I had thought I would be heading for home long ago, but it took longer than I had hoped it would to work through my chores. At least I am having a relatively unfuzzy day cognitively, so I was not dealing with the frustration of "If only my mind would work the way it used to." I had the more run-of-the-mill frustration coming from the basic principle that work expands to fill the available time...and then some.

Before leaving, I stopped to check to see if maybe you had written, and I am glad to have a chance to say something about one of your comments without delay. I doubt highly that the endocrinologist will fail to hear indications of an endocrine system problem in what you report. My concern has been that she might mis-categorize some of your symptoms as "not thyroid-related" simply because she--like my endocrinologist, apparently--has not happened to have a patient with hypothyroidism whose thyroid gland's inadequacy was producing a symptom such as a racing heart (which really is pretty counterintuitive, when you think about it). In case the doctor has any potential for mis-categorizing your counter-intuitive symptoms, at least you now can give her some food for thought in the form of saying that you know of someone, who seems to be an accurate reporter, whose hypothyroidism has produced the same counterintuitive symptoms that you have.

I am greatly heartened to hear that the doctor is very open and compassionate, from what you have heard. Assuming that a doctor is reasonably skilled, then I think that openness and compassion are about 90% of what makes the difference between getting good care and getting a misdiagnosis.

I agree with you; I think that you made the right choice in turning to the Sydney doctor for help. A lot can be accomplished from a distance, and it seems much, much better to me to put yourself into the hands of someone you have solid reasons to think is top-notch than it would be to try out different endos in Melburne, which could be an endless process. Considering how difficult it is reputed to be to get into medical school, it is mildly amazing that so many people get in, go through the educational process, and come out of it as mediocre physicians (or worse).

Good for you for putting together a careful history of your affliction. In my experience, being prepared with an organized acccount immensely helps a doctor to help you.

My dream-come-true for you would be to have the doctor recognize everything you describe as clearly related to Hashimoto's and have the matter be simple. My guess is that she may ask if you can arrange for a little more testing, although probably nothing radical. It can be frustrating to be given that sort of news, which means more waiting and wondering, but at least I feel certain from what you have said that you will not be facing what would be a nightmare: a doctor who says that your condition is a psychiatric one. With your medical history, I just cannot imagine that a competent endocrinologist will not readily recognize your problem as being squarely within the field of endocrinology.

By the way, you are entirely welcome for my posts, but I want you to know that you are boosting my morale, too. I feel as if the process of getting my thyroid problem under control is like being in a race-walking contest (running a marathon is too energetic an analogy for the way I feel!), and someone keeps moving the finish line farther away. It helps me to keep my situation in perspective to read your comments about being desperate to get back to a life. When I began to lose ground because of my worsening thyroid problem, I was worried that some volunteer work I am involved in that is related to my job might go down the drain. I was afraid that I just could not keep up with the necessary and the optional work both. The volunteer work is a long story, but it promises to lead somewhere exciting, so it would have broken my heart to let it go. Although I held everything together only barely as I went through the most difficult stretch of time, I HAVE held it together. Your comments about your situation are reminding me to feel an appropriate amount of gratitude, even if I still am a long way from being my former self.

You and I have a lot in common! My volunteer work involves some teaching, and I also taught when I was in graduate school. I recognize readily your comment about getting such a buzz from it. Then there is the fact that you and I both have a complex piece of machinery inside our skulls that we assembled through a process of formal education and that is integral to our work. I should postpone any further commiserating until the day after tomorrow, but let me just say that when I read your explanation of your vocation, it occurred to me that you and I are somewhat uniquely positioned to empathize with each other. The cognitive fog that is a well-known consequence of thyroid problems is something that you and I feel quite keenly.

I am so sorry to hear that you are having withdrawal symptoms from the Seroquel, although probably less so because you did some tapering off before you stopped the drug completely. All the same, any amount of negative reaction to stopping the drug is like insult to injury when you are feeling unwell already. I agree with your "Uggghh" assessment of the drug and am glad that you are off it entirely. Now if only your brain will hurry up as it adjusts to no longer being zombie-fied.

Off I go now to get ready for my day of errand-running. I am glad to be taking your e-hugs with me!

Sending you lots of e-hugs in return,
Jenny
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Avatar universal
Good morning, Julia--

It is Sunday afternoon in Washington, and I have a "chores" list that I have to get through before I leave my office, which I am hoping to do in a short while. Tomorrow, I have a rental car for the day, for running the sorts of errands that are difficult or impossible using public transportation. I am car-less by choice and only need to rent a car for errand-running about twice a year. I have not done so since the first of July, however, since I have been mostly unwell since then. Needless to say, the amount of catching-up that I need to do is substantial. In order to get ready for tomorrow's errand-spree, I could use some extra time at home this evening.

As a result, I am going to postpone the commiserating that I want to do do with you and write to you only about the possibly helpful thought that might be relevant to your telephone appointment. My thought regards the fact that you and I have had symptoms that are not commonly recognized ones of hypothyroidism. As I described to you, my endocrinologist thought long and hard when I asked him if my thyroid gland could be causing paradoxical symptoms. He then could only say that he just did not know. He seems to be highly regarded by his peers in Washington, he sees many patients with thyroid gland problems, and he pursues continuing education with more zeal than any other professional I know.

If he did not have a ready answer, in other words, then I am concerned that when you talk to the endocrinologist, she may not recognize all of your symptoms as being possibly symptoms of hypothyroidism. Your experiences of a racing heart, a ravenous appetite, and feelings of anxiety may indeed not be symptoms of hypothyroidism, but I am glad to be able to tell you that at least for one other person, they clearly have been just that. It might be helpful if you told the endocrinologist that, but of course, if you say anything, it will be important for the physician to find my account credible.

Here is where all the background information I have given you comes in. A physician might wonder whether--when I read your initial post--I was so identifying with your difficult plight that I imagined having had some of those symptoms, too, even though I really had not. I have told you enough about myself for you to know otherwise. You know that I have not compared myself to you on the basis of vague impressions. You know that I am a researcher with doctoral-level training, which means that I am all but over the edge in recording information about my symptoms with exactitude. In addition, as I commented to you yesterday, I have looked back through my symptoms monitoring forms to check my facts about how closely my experiences have mirrored yours. Finally, you know that I am not someone who is either so bored or so neurotic that she spends great amounts of time focused on how she is feeling, thereby exaggerating her bodily oddities. All of my symptoms, including spells of a racing heart, have seemed to come out of nowhere, for no apparent reason, and have been impossible not to notice.

Medically, I have been carefully assessed enough to be safe in saying: All that is wrong with me is mild hypothyroidism. I do not have antibodies. I do have a history of radiation treatments for acne in the days when it was still thought safe to use that treatment (those also were the days before a vulnerable part of a patient's body, such as the thyroid gland, was shielded with a lead covering before exposure to radiation). As my thyroid gland struggled ever-harder, the time came when the estradiol that I take for menopausal symptoms seemed to complicate the struggles. Other than that, there is absolutely nothing to be said about me medically. I am as healthy as can be.

The endocrinologist you talk with may have heard before about paradoxical symptoms like yours and mine. Among even the most competent physicians, it undoubtedly is hit-and-miss as to what someone has encountered before. In case she says "Well, that could not be your thyroid gland" in response to something you report, I want to help you to be well prepared for saying something that might cause her to reconsider. I can imagine that it may be somewhat difficult to communicate as clearly as you want to when you are suffering from quite a bit of cognitive fuzz. How well I know how that can be.... If you have it firmly in mind, in advance, that someone else has had your symptoms and that they emanated from the thyroid gland, it might possibly be a help once the discussion is under way.

I know that I shall be thinking about you tomorrow as I toodle around on my errands. Your Monday must be just getting underway right now. I hope that you have a reasonably good day ahead. On Tuesday, I am spending the whole morning in various meetings, so I will not get to my office and be able to log on until the crack of dawn, Melburne time. I will be eager to see if there is a note from you, though, and I will be hopeful that it contains good news at the "holding my own" level at least.

With warm best wishes,
Jenny
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Avatar universal
Dear Jenny,

Thank you again for your posts. As you know, they are boosting my morale no end...

I think you are right when you say that I need to be prepared for the doctor to tell me that the symptoms are not related to my thyroid. I have been thinking about this a lot lately and am trying to prepare myself pyschologically. I have made a careful list of my symptoms and their evolution over the past few months. From what I have heard, this particular doctor is very open and compassionate so I feel like I have made the right choice, although only time will tell. Melbourne is a big city - 3.5 million people - so you would think I could find a decent endo here, but maybe I haven't looked hard enough!

I'm feeling pretty fuzzy today because I have only had a couple of hours' sleep. This is probably due to my withdrawal from the Seroquel (anti-psychotic). Uggghh - what a frightening drug! It never made me feel any better, apart from turning me into a zombie!

I am so desperate to get back to a life. I have been virtually housebound for two months apart from doctors' appointments. I can't wait to go out to restaurants, the symphony, theatre - all the things I used to do. I also miss teaching so much - I have always got such a buzz from it! I love travel too - I lived in France for four years (where I met my husband) and have missed it desperately since I moved back to Australia. Maybe all of this is a big wake-up call for me to never take my health and independence for granted again.

I think you were asking when my appointment was. It's at 2pm on Wednesday.

Sending you lots of e-hugs...

Julia




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Avatar universal
Hi, Julia--

Our letters crossed in the mail, I can tell.

You are entirely welcome for my post. Thank you in return for your very kind comments, and I mean it sincerely. As you can tell from my postscript, I am having still another bumpy day, and the boost that your comments are giving to my morale is immense.

My bumpy day is quite mild compared to your recent bumps. I am so glad that you are feeling not too bad this morning. I hope very hard that it lasts, and I also hope it will be helpful evidence to the endocrinologist, when you talk to her.

It goes without saying that you have satisfied my curiosity about the antipsychotic medication. I am glad that you are off it, and if you begin to feel worse again, it will not mean that stopping the medication was necessarily a bad idea. As I read more and more posts at this forum, I am starting to think that I am far from the only person whose well-being follows a roller coaster pattern because of an endocrine system problem.

In regard to my cognitive fuzz: Where I see a difference is in how hard I have to struggle (or not struggle) to be organized. On bad days, the formerly routine process of assigning priorities to various activities and then working my way through them is overwhelming and nearly impossible. Before I began medication, it was a struggle just to organize my thoughts and get them into words. Now I think that whatever writing ability I had is back in full. So thank you for your generous words, but I am afraid that you are seeing all the pistons in action already!

As promised, I will be sure to write tomorrow. I hope that you will continue to have a good day.

With warm wishes in return,
Jenny
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