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high thyroid antibodies and psychiatric symptoms
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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_n_tn
HOney I understand what you are going through being bipolar myself with thyroid trouble.Sre your other meds helping at all? and is your doc and endocrinologis that specializes in thyroid disorders?

All the web sites I have been to link mental health and well being to the function of the thyroid.
I am on zyprexa/celexa combo for the bipolar and synthroid/cytomel for my lack of thyroid.I also have a therapist that works with my med manager and I like to say my bi polar is in remission.I take my meds faithfully now for 6years and that is a bi polar record.
Let me know if I can be of any help cause I have been there where you are and I understand.
Prayers and hugs for you.
Love Venora
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Avatar_n_tn
Thank you both for your support. All I know is that I was feeling well, working, getting on with my life and all of this came on very suddenly with an attack of crying in the shower in late August. I felt like (and still do) that my emotions are not my own and that I can't control my reactions. The only thing that I think may have provoked it was an x-ray that my dentist ordered. I don't know what the test was called but the machine sort of circled around my head. I know that radiation can upset thyroid function but still don't know if this was the cause. In any case, I know that I just can't keep taking these horrible psychotropic meds because I have too many physical symptoms to ignore. BTW, hypo/hyper, what medication did you go on?
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Avatar_f_tn
Did you have any mental health history before all this?  If not, I can share only my experience.  I had a horrible experience starting this past August.  I had an MRI with contrast to rule out sinus infection r/t ear problems. (from what I learned, the contrast can irritate an already failing thyroid.) I have no mental health history.  About 3 weeks after receiving the dye, I ended up with full blown panic attacks/anxiety, I felt like I was losing my mind.  My eyes weren't focusing properly, and they hurt to move them, my hands were numb on and off, I had horrible headaches, generalized aches and pains, tachycardia in the 150's...etc.  You name it, I probably had it.  Needless to say, I thought I was dying, or going crazy. I looked everywhere for answers.  Family doctor, neurologist, cardiologist, ob/gyn...I felt like they thought I was crazy because nothing was showing up in my tests, at least not in the ones they were ordering.  After months of trying to find answers, nd ENT and OB/gyn diagnosed me with Hashi's/Thyroiditis.  No one had checked antibodies on me until my thyroid was "pissed off" (as my MD put it).  My anti TPO antibodies are >1000.  I also have 3 nodules and a goiter.  After about a month and a half, my panic attacks/anxiety went away.  If this sounds like you, let me know.  I will try to help you through what you are going through.  It is terrifying when you don't know what is going on with yourself.  I felt betrayed by my own body.  When I finally got the diagnosis, I felt completely vindicated as I knew that something was not right with myself.  Hang in there!  
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Avatar_f_tn
Just before logging off for the night, I looked again at your description of your symptoms. Because what you have been experiencing is so very, VERY much like what I have been through, I want to tell you a bit more about what I experienced once I started taking medication. If you find an endocrinologist you feel comfortable with, and if the two of you decide that it makes sense to try some medication for hypothyroidism, it might be good for you to know about the experiences of someone else who also had a racing pulse and ravenous hunger as symptoms of hypothyroidism. It does not necessarily follow that you would have the same experience I did with thyroid medication, but just in case....

When my endocrinologist realized how scared I was to start taking medication, he suggested that I take 10 days worth of half of the weakest dose manufactured, or 12.5 mcg. of levothyroxine (I take a brand name, not a generic, but levothyroxine is the catch-all term for the medication that is chemically identical to the hormone your thyroid gland produces). My endocrinologist and I termed my initial 12.5 mcg. dose a "sissy dose."  He said it was too weak to make me feel better, but at least it would show us whether the medication would worsen my paradoxical symptoms. Fortunately, my endocrinologist recognizes me as an accurate reporter, so when I told him that after nine days of a sissy dose, I actually DID feel better, he did not doubt me. He simply said, "Your system apparently is very sensitive to thyroxine."

The next step up the scale, to 25 mcg., showed just how sensitive my system really is. My blood pressure went up substantially, and I often had spells of a pounding heart. I still say that the medication has done nothing but good things for me. By my choice, however, I have eased my way up the scale 12.5 mcg. at a time, which is a smaller increase than what my endocrinologist usually prescribes. With each increase, I have endured a few days of blood pressure readings that are higher than I like to see along with the pounding-heart episodes. Then my system adjusts and everything simmers down again.

The medication adjustment process has not been quite that simple, though. I have felt as if I was on a slowly moving symptoms roller coaster. Days of feeling much better have alternated with days of feeling perfectly awful again. All the same, my overall level of well-being has risen steadily if I average the good days with the bad. It was quite a few weeks before I felt well enough to describe this up and down pattern to my endocrinologist, ask him if he had seen a patient with that pattern before, and feel sufficiently brave if he said, "No." Instead, when I asked the question, he smiled in response as he said that he sees about two people a year who go through a roller coaster experience.

In addition, 28 days seems to be the point at which my thyroid gland tells me that although it appreciates the medication support I have been providing for it, the support is not enough. I have dramatic drop in well-being, I KNOW I am ready for another dosage increase, and the blood tests are almost a formality.

All of this up and down stuff is straightening out as I get closer to whatever an optimal dose of medication will be. I have a higher level of well-being, and a more stable level of well-being, with each medication increase. Still, the process as a whole has felt like a long haul, and indeed, it has been. It is for probably the majority of people with hypothyroidism. Step One is for you to find a competent endocrinological helper, but then once you do, be prepared for the bumpy times to continue for awhile. Do remember, though, that people at this forum are right when they say, "It DOES get better." It seems not long ago that I found that very difficult to believe, but it is true.

Best wishes to you, and please let us know how you are doing.
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Avatar_f_tn
I looked hard at your comments to see if you indicated whether your doctor is an endocrinologist or a general practitioner. If you are not seeing an endocrinologist AND an endocrinologist who specializes in thyroid problems, I think you really should. After I was diagnosed with mild hypothyroidism, *I* was the one who was worried that taking medication to support my thyroid gland would aggravate my symptoms. I was scared out of my wits, actually. When I asked my really wonderful endocrinologist if my thyroid gland's struggling could be causing paradoxical (meaning: contradictory) symptoms, he sat back in his chair, looked thoughtfully at the ceiling for a very long time, and said, "It could be...We (meaning the field of endocrinology) just do not know enough to be able to say."

We had this conversation two months after my endocrinologist had diagnosed hypothyroidism. At the time, I felt relatively well, other than a problem with sleeping that had been slowly but steadily worsening. Then my thyroid problem began to make its presence apparent. When I read your account of symptoms, hair loss is the ONLY symptom I do not recognize as one of my own.

Although I ordinarily shy away from giving people advice, I feel as if I want to beg you: Please go looking for some skilled help without further delay. By "skilled" I mean 1) and endocrinologist, 2) who is interested in thyroid problems and deals with them a lot, and 3) who, like my endocrinologist, will take you seriously when you say that you really do not think your psychiatric symptoms are coming from unresolved emotional conflicts. The fact that you have elevated TPO antibodies should cause any competent endocrinologist to toss aside whatever psychiatric diagnosis was pasted onto you and look hard at what your thyroid gland is doing (or not doing).

I am not a physician, and I cannot make the sort of promise I wish I could make, but I at least can hope that you might have the same experience I had. Despite my being scared silly as I started to take medication (in mid-September), the medication for hypothyroidism has done nothing but good things for me.

I would tell you what medication I am taking if I thought it would be helpful, but I think it is not really relevant to your difficulties of the moment. If I am guessing right, and if you--like me--are having hyperthyroidism and psychiatric symptoms from what actually is a case of hypothyroidism (which you may have had for awhile, as I can see in hindsight that I did), then what matters is finding a specialist who will work with you in a supportive partnership in getting your problem under control. Medication decisions are better made by a patient and physician together than they are by us laypeople forum members.

By the way, my preceding paragraph was related to thyroid medication. In regard to medications for depression or anxiety, people with thyroid problems make different decisions about whether to take medication or whether to "tough it out" until the thyroid medication eases the psychiatric symptoms. There is no "right" decision, especially because the cognitive/emotional effects of a thyroid problem can absolutely pound on a person. Just ask me!
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I chose not to take any meds.  I took 4 days of Lexapro and felt worse, truthfully, I didn't believe that was what I needed.  Besides, I wasn't depressed when all this had started for me, just anxious because of all the symptoms.  I can't substitute my advice for your doctor's, this is just my experience and I don't know all your tests, symptoms, mental health history.  I tried relaxation methods (I was skeptical) but it did help me some.  Basically, I broke the cycle of anxiety I was having by accepting that the symptoms I was having were real, and kept telling myself that someone would figure out what was going on eventually.  Some people have to take medications.  I chose to read all I could about anxiety and treatment without medication, and go to counseling because prior to all this happening, I was a self proclaimed stress junkie.  It think that the fuel to anyone's anxiety starts when there are no answers to things that you feel are threatening.  Once you have the answers, your mind can rest and begin healing.  If you feel you are misdiagnosed, keep looking for your answers.
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Jenny,

Thank you so much for taking the time to write those posts. They definitely give me an insider's perspective on the whole thing. Were you ever prescribed any kind of psych medication? The stuff they have me on doesn't seem to work at all. I still get panic attacks no matter how much medication I've taken. I have also noticed that I have a very poor memory and just cannot think clearly. It is very distressing because I have always been so proud of my memory!!  
Again, thanks for your insight - it's nice to know someone cares!
juju
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Avatar_n_tn
a long time ago before they knew a lot about the thyroid ther actually was a lot of people in mental institutions with undiagnosed thyroid problems.
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Avatar_n_tn
sounds like you felt like i felt. except my thyroid was low. i felt like i was slowly dying and had the symptoms for years. i had hard time talking or concentrating on anything. it was hard to even do the dishes. I felt like i was going insane. had feelings of doom and didn't even feel like a human being anymore. just a dead body walking around. when your thyroid is low your mental and physical abilities deteriorate. felt like 10% of myself.but u said your thyroid level was normal? I would go to a specialist and have it rechecked.
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Hi, Juju--

I am sorry to have been so slow with a reply. I do not have internet access at home, so I was away from the forum all weekend.

I DO care about you, and in fact, I was thinking about you this weekend. Our symptoms are highly similar, but I have had a much, much easier time than you. By the time I developed "just can't think clearly" problems along with depression and a lot of other cognitive/emotional symptoms, I already had a diagnosis of hypothyroidism, so at least I knew what was going on. More than once, I have thought of what an unbelievable panic it would have thrown me into if my thinking and emotions had started to go out of whack with my having had no idea what was going on.

This weekend, I was thinking specifically about your comment, "All I know is that I was feeling well, working, getting on with my life and all of this came on very suddenly." As I mentioned in my comments last Friday, I still felt well, both physically and emotionally, when I was told I had hypothyroidism. Although my symptoms came on somewhat more slowly than yours, there was a stretch of time, several weeks in length, during which an assortment of thyroid-related symptoms developed. At the end of that time, I felt as if I had slid down the slide of a very deep ditch, and now I was at the bottom (feeling very much bottomed-out), looking up at the very top (which represented the wellness I had had in the recent past), and thinking, "How did I get here?" It would not be such a distressed question for some of us if the world of medicine could pull us back up to the top quickly, but because of the way the thyroid gland works, the climb back up tends not to be a speedy one.

The last time I saw the physician who knows me the best and who is immensely human, sympathetic, and caring, I "got it off my chest" in regard to the burden on my morale that my thyroid problem has caused. I was realizing that the experience would have been easier if I had known it was coming. If there had been a magical way for a physician to foretell the future and tell me, "You are about to go through a very difficult time, and you will come out of it eventually, but you will feel unlike your usual self for several months' time," then I could have made preparations--both practical ones related to getting my life in order and emotional ones. I could have "braced myself," in other words. It has been so difficult to feel as if, with no warning, I went from a state of just what you described: feeling well, working, and getting on with my life to a state of barely being able to hold daily life together, day after day after endless day.

How much WORSE it must be for you. As I said, at least I had a diagnosis when my symptoms started, and I had seen--and made a good beginning on a rock-solid relationship with--an endocrinologist who is a perfect health care partner for me. I cannot even imagine what it was like for you to tumble down into the ditch I have described and end up in a psychiatric unit for ten days. With the symptoms you described, it is reasonable that a health care provider would want to be certain you did not have unresolved emotional conflicts that were causing the symptoms, but Rule Number One in psychiatry and clinical psychology is to rule out an organic cause of the symptoms as a first step.

Let me pause here long enough to say that many years ago, when I was in my 20s (I am 56 now), I spent a long spell in psychotherapy. It was enormously beneficial. I learned how helpful a competent psychotherapist or counselor can be (although I also have learned how many incompetent or barely competent people there are in the worlds of psychiatry and clinical psychology). The point may come at which you want to seek some counseling to help with the anger that you either feel over the way you initially were treated or that may develop as you are able to look back on the situation.

Having been prescribed psychiatric medication in the distant past, I know that it is VERY important not to stop your medications abruptly. I came into work this morning with it at the forefront of my mind to write to you to say that.

I am not at all surprised, though, that the stuff you are taking is not working at all. If you have a problem with your thyroid gland, which seems like a good possibility, it makes sense to me that you could be having panic attacks even though you are taking medication that supposedly will prevent them. As for your poor memory and inability to think clearly...oh, my, what a book I could write about that. Such symptoms certainly can go along with major unresolved emotional conflicts, in which case everything that promoting healing ("talk" therapy as well as medications) would tend to help. When a thyroid gland is fuzzing over your mind, however, nothing will help but getting the thyroid problem under control.

You and I are alike in having tip-top memories. Although the process of getting my thyroid gland adequately supported with medication has been a bumpy process for me, the workings of my memory have been the most clear-cut sign that finally, I am doing significantly better overall. Once again, I can retrieve items from my memory as effortlessly as I used to.

There is hope, in other words! Are you planning to look for an endocrinologist? I agree with Thyroid Man (who could have been speaking for me as he described how he felt with an untreated thyroid problem). Not only should you probably have your thyroid-related blood levels rechecked, you might be surprised by an endocrinologist's reaction to the blood tests you already have had that you were told were all in range. If you have started to do some reading about hypothyroidism, you are learning that the thinking about what level of thyroid stimulating hormone (TSH) equals "normal" has been changing and is continuing to change.

I could be a case study of the foolishness of the thinking of bygone days (although the thinking is not at all bygone with some physicians) that not until a TSH level was as high as 5.0 was treatment warranted. I went from having every reason to feel on top of the world, and feeling it, to feeling (as Thyroid Man put it so well) like just a dead body walking around, and my TSH level was "only" 4.11. That level had warranted a diagnosis of subclinical hypothyroidism, by the way, along with an "It should be treated" comment from my endocrinologist. In addition, I think I have heard of instances of someone's having a normal TSH level ("normal" according to up-to-date thinking), but an endocrinologist said that treatment was warranted on the basis of TPO antibodies and symptoms.

Since I cannot know all of the aspects of your situation, the situation may not be as clear-cut as it seems to me from a distance. On the basis of what you have written, though, it seems obvious that you need to see an endocrinologist who specializes in thyroid problems. That is doubly true because my advice that you NOT stop the psychiatric medications you were given is sound advice, but there is a possibility that one or more of them is aggravating your thyroid problem and making your symptoms slightly worse. The physician who does not want to prescribe thyroid medications because she is afraid that they will make your symptoms worse either is not an endocrinologist or is not necessarily the right endocrinologist for you. I hope that you can find your way quickly to someone who can review your entire situation with real insight (including the insight that hypothyroidism CAN cause anxiety, no matter how contradictory it may seem).

Please keep in touch and let us know how you are doing. The members of this forum are the most caring group of people you will never meet. ;o)

Sending you an extra dose of caring,
Jenny
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Avatar_n_tn
Jenny,

Your kindness and compassion are giving me great comfort during this very difficult time. Everything you say makes sense and I thank you again for taking the time to help me. The doctor I am seeing is only a general practitioner and I am hesitant about going to see an endocrinologist because I have heard that many of them in Australia (where I live) do not treat patients with elevated antibodies when labs are still in range. The problem is that I cannot afford to keep seeing doctors as this whole process has already cost me thousands of dollars (lost revenue, tests, hospital admission).
I really don't know where to go to from here. I am 31 and have almost lost my marriage because of this. I am staying with my mother who is becoming sicker as she watches me go downhill. I am so tired that I spend the day in bed, and lie awake much of the night. I don't know why I am telling you all this - I just feel so disempowered by the whole situation - I cannot even remember what normal feels like. You don't need to reply to this post - I think I just needed to vent.
Thanks again for your kindness
juju
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Avatar_f_tn
Dear Juju,

I am SO glad that I have managed to provide some comforting for you.  If anyone qualifies for a little comforting, it has to be you! In regard to attempting to be helpful, I am nowhere near finished. I appreciated your saying that I did not need to send a reply, but what an unthinkable idea. My compassion is heartfelt, and I would have written a reply for that reason if for no other.

In addition, however, I might be able to supply some of the problem-solving variety of thinking that probably is all but impossible for you right now. It was not long ago that I, like you, simply could not concentrate or even follow simple conversations. As I have commented before, I was incredibly blessed, in that by the time my thinking became fuzzed over, I already had both a diagnosis of hypothyroidism and a good endocrinologist to help me with the affliction.

It is difficult for me to imagine being in your situation. How bitterly ironic that just at the moment at which you most need to be able to be your own advocate and problem-solver, you have nothing to work with but a fuzzy brain. I hope that I can supply some auxiliary thinking that will be helpful. Your providing some details of your situation has at least opened the possibility of my providing a thinking supplement, so thank you for telling me more about your situation.

In fact, I am sure that you DO need to vent (as do we all, even when our plight is much less difficult than yours is), but maybe another reason for telling me everything you did was a hope that I might respond with something useful. Possibly I can. Let me just ask you a question and then we can take it from there. Is your general practitioner someone who seems sympathetic, someone with whom you have a good rapport, someone you trust...in short: Do you have a good patient/physician relationship with her?

I will keep an eye out for your reply. I live in the United States in the District of Columbia (Washington, DC). I wanted to be sure to tell you that so you would know how many time zones apart we are. If I seem slow in replying to your reply, it may be because I have left my office for the day.

Yours sincerely,
Jenny
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One more question: Do you have the results of your recent thyroid-related lab tests? If you have the reference range for each test as well as having each number, both pieces of information are helpful. I am careful not to be an amateur physician, so I am not likely to have a lot to say about test results, but if you have the numbers at hand, I am very curious.
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P.S. I forgot to thank you for your kind thoughts of me! As you can tell from my previous post, I am not doing as well as I would like to be, but I hope that something helpful will come out of my visit to my endocrinologist tomorrow. Until now, something helpful always has, and the questions that I think are real puzzlers turn out to be easy for my doc to answer. While I wait to see what he can do with my latest set of puzzlers, it is a boost to my morale to be ending the day with your "I'm thinking of you too!" message.
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Hi, Julia--

It is 1:00 P.M. here in D.C., and having had an unexpectedly crazy morning, I am just now logging on. You are entirely welcome! Thank you in return for updating me. I am VERY glad that you were able to arrange to talk with an endocrinologist who also is a fellow sufferer. As for the bovine thyroid, I am glad that your general practitioner was open to the idea of trying you on a very low dose of medication, but I understand your hesitation very well. Do you think you could "tough it out" until you talk to the endocrinologist next week? If I were in your shoes, knowing everything that I have learned along the way, I would try to postpone the start of medication until I had talked with the endocrinologist, especially if what I had been given was bovine in origin.

I am speaking from a somewhat biased point of view, however, having done a thorough job of reading about and thinking about Armour, which is extracted from pigs and which is a popular thyroid drug in the United States. It probably is safe to say that most of us who take a thyroid drug have a bias in one direction or the other--either in the direction of animal-derived or laboratory-manufactured medication. I think you would get a good overview of what is behind the two viewpoints if you read the thread at this forum that was started on 2/21 by tiredpuppy. The subject header is "Is anyone on Armour?" It currently is about two-thirds to three-fourths of the way down on Page 3.

Having given you some suggested reading, I am going to log off for the time being, because I need to get ready for a 1:30 meeting. I do have another comment or two that I want to make in reply, however, so you should expect to hear from me later today.

For the moment: I am SO glad that something positive has developed in your extraordinarily difficult situation--I am thinking of your finding the endocrinologist. I am very, very glad, too, if I am helping to keep your morale afloat. I know how extremely difficult that part of having hypothyroidism can be.

Sending you an e-hug,
Jenny

  
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Hi, Julia--

I am back at last with the other comment or two that I wanted to make in reply to your reply.

A lot of what I want to say is: Expect to hear from me tomorrow with a report of what my endocrinologist tells me. The last time I saw him, toward the end of our discussion, it became clear to me that a person's TSH level is only half the story. At that point (6 weeks ago), my TSH was just under 2, and my free T4 level had risen from last summer's low of .87 to 1.21. If I understood him correctly, my endocrinologist commented that a free T4 of between 1.3 and 1.4 is the level at which a person tends to feel the most well. I am sure he was telling me that mine was still a little low. It was part of his response to my "With a TSH level of 1.9, why am I not feeling better?" question.

Before I go any farther, let me toss in a quick terminology tutorial so that you will be clear about what you are reading these days. The hormone that your thyroid gland produces, that is termed "T4," is thyroxine. Your body takes care of converting some of the T4 to T3. The term "levothyroxine" is used for the medication that is chemically identical to the thyroxine your thyroid gland produces.

Back to my comments about my endocrinologist. I am eager to see what he says tomorrow morning about lab work that I had done yesterday and also about my report of my well-being over the last six weeks' time. I think I mentioned to you that during the first part of the process of adjusting to levothyroxine, my well-being went up and down like a slowly moving roller coaster. Then, very predictably, at or just after the 28-day point at a given dosage level, my well-being always has taken such a plunge that I knew I was ready for a medication increase. Lab results have been more useful for tracking purposes than for decision-making purposes.

Why do I go through a well-being plunge? This will be one of my questions tomorrow. Some of my thyroid-related symptoms were eased by the medication almost immediately and have not returned. Others are like a "package," in that none of them bother me if I am feeling well, but they all come back together when I am doing poorly again. I think I already have the answer to "Why after 28 days?" It takes awhile for levothyroxine to build to a therapeutic level. My endocrinologist told me at one point that the 28-day mark probably is when the drug, at a given dose, reaches its full therapeutic level.

For the last six weeks, I have been taking 75 mcg. of levothyroxine a day. Beginning on the 10th day, I had an almost three-week-long time of being tantalizingly close to my formerly high level of well-being. I thought "Maybe this is it" in regard to how high a dose I need. Then starting on Day 30, my well-being started the familiar plunge. I have not gone downhill quite as far, and I did not plunge nearly as dramatically, as before. All the same, it seems to me that my vexing symptoms and poor level of well-being are signaling the need for a medication increase, as they have each time before.

What is interesting: Six weeks ago, my TSH level was 1.9 and my free T4 was 1.21. Yesterday, my TSH level was .9 and my free T4 was 1.22. The lack of increase in my free T4 level may explain why once again, I had a 28-day-or-beyond plunge in well-being, but my big question for my endocrinologist will be, "Where do we go from here?"

I am telling you all this because you commented that your free T4 and T3 levels are in the low-normal range. That might be meaningful, even though your TSH is a seemingly perfect 1.0. After tomorrow morning's discussion with my endocrinologist, I hope to know more. I have a long meeting right after my medical appointment, so I may not reach my office until the crack of dawn where you are. I will be sure to write to you then.

I am glad for you that you have a primary care physician who apparently is more knowledgeable about thyroid problems than many primary care physicians are able to be. Her knowing that the level of antibodies does not always correlate well with symptoms tells me that she knows quite a bit. All the same, I am glad that you have a phone appointment scheduled with the ideal: an endocrinologist who knows a lot specifically about Hashimoto's.

Here is a next-to-last comment for the day: The more reading I have done about hypothyroidism, the more I have come to think that blood levels of almost anything are poorly correlated with symptoms. I read of a man in his late 60s who was discovered through routine blood tests to have a TSH level of 13, yet he said that he felt fine and dandy. Conversely, I was impressively unwell and semi-disabled with a TSH level of 4.11.

My last comment: I had strong sympathetic vibrations to your saying, in regard to your hesitation over beginning to take levothyroxine, that you do not know whether it will help or hinder you. What form of the drug you would be the most comfortable with--animal-extracted or laboratory-produced--is a decision all by itself. Then whether you are comfortable with giving the drug a try at all is another decision altogether. I plan to say a few additional, encouraging, words about the second decision, but I have given you enough reading for one sitting!

Sending you another e-hug,
Jenny
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Jenny,

Again, thank you for your wonderful posts - I can't tell you how much they are helping me at the moment. I saw my doctor again today - she said my free T3 and T4 are in the low-normal range but my TSH is a perfect 1.0! My antibodies are at 69. I have heard of people with antibodies in the 1000s so I remarked to her that 69 didn't seem that high. However, she told me that the level of antibodies does not always correlate to the severity of symptoms. Apparently she has seen people as unwell as me with normal labs and relatively low antibody titers. Anyway, she has decided to put me on a low dose of bovine thyroid. I am VERY hesitant about taking it because I simply don't know what is in it and whether or not it will help or hinder me!
I have made a phone appointment for next week with a thyroid specialist who practises in Sydney (I live in Melbourne - about 1000kms away!). She has Hashimoto's herself and sounds very knowledgeable. I really hope she can help me!
I hope you are feeling well - I'm thinking of you too!
Julia
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Hi, Julia--

How sweet of you to be thinking of me, especially when your current difficulties are so much worse than mine! And here I logged on to write to you, feeling very apologetic over having taken so long to send the follow-up comments that I promised to you yesterday. Instead of your feeling let down, you were only wondering about my well-being. I am truly touched.

My appointment with my endocrinologist went VERY well. He found it interesting that my TSH level has gone down more steadily than my free T4 level. It does not mean anything bad; it was just interesting to him. As so often happens, he said that there is a lot that the field of endocrinology knows far too little about. That was more or less his reply as well to my question of why I have characteristically had a fairly dramatic drop in my well-being after 28 days of medication at a given dosage level. He said, "We do not begin to know enough about bio-rhythms....

At least he believes me that it is real and meaningful. He was a little concerned that I was beginning to expect a drop in well-being at the four-week mark and that my expectations were at least part of the cause of the drop. He said that it would be nice to have some objective evidence. Coincidentally, I had taken a blank copy of a symptoms monitoring form that I put together for myself this past summer. I put it together because given my somewhat puzzling symptoms, which I have had for awhile, I have thought it was important to keep notes about my symptoms and their comings and goings.

The problem is, and I am about to make a tongue-in-cheek comment (it is only kind to give advance warning when someone is having the sort of cognitive fuzziness that you and I have), I am not as self-focused as I need to be for someone with puzzling symptoms. Spending time writing about myself in detail was
SO boring that it was becoming increasingly difficult to keep a symptoms account up to date. So I put together a one-page form that includes my most common symptoms with a "yes" or "no" after each one. I also have some fill-in the blank items. At the end of every day, I circle "yes" or "no" for each symptom to indicate whether I had it that day, I fill in the blanks, and I am done. The daytime covers half the form, and then the other half describes what sort of night I had (since sleep disturbances have been my most aggravating symptom). Before I leave for work, I fill in the nighttime part of the form.

Even this little bit of work has taken some self-discipline (if I ever found my own medical condition interesting, I shifted over to boredom a long time ago!). I have been good about filling out the forms, though, and after my endocrinologist looked over the blank form, he said "This allays my concerns."

By the way, I am telling you about my monitoring form for a reason, not just chattering!  Let me postpone the explanation, though, until this weekend. For the moment, just know that this is background information for comments that I will be sure to make before your telephone appointment next week. One more piece of background information: I am a social science researcher, so collecting information very systematically comes as easily to me as breathing in and out.

Back to my report of this morning's discussion. Early in the discussion, my endocrinologist said that an increase in my levothyroxine level would be okay. I am shifting from 75 mcg. to 88 mcg., and I will have my TSH and free T4 levels assessed in another six weeks. If my TSH level goes as low as .50, my endocrinologist said that he will not want to push it any lower. With a little luck, though, suppressing my level of thyroid stimulating hormone a little will lead to the bit of a rise in free T4 that apparently I need.

I found out that in a sense, I was right in thinking that my endocrinologist had said that a person's TSH level is only half the story. TSH and free T4 are inextricably linked, however, so a person would expect that as the level of one falls, the level of the other would rise. I did at least clarify one fact on your behalf: It is indeed meaningful information that your free T4 level is at the low end of normal. My own low point of .87, which I mentioned to you yesterday, was in the normal range according to my lab's reference range--something that I did not think to mention.

As for why your TSH level is also as low as it is, I can only say again that I am glad you have been able to make a connection with expert help. The endocrinologist you talk to may be able to explain your lab results as a whole without any difficulty, or she may recommend some follow-up tests to help her get a clearer picture. The endocrine system is so complex that when a person has signs of a possible thyroid problem, as you clearly do, a primary care physician should try to figure out what is going on only if the signs form a truly clear-cut picture--this is an opinion, but one that has become more and more firm with me as I have read about more and more people's experiences.

As I commented yesterday, I have something encouraging to say about the idea of a trial dose of levothyroxine for you, but I am writing this while babysitting for some good friends, and I can hear that they have just come in. I am going to log off now, but I promise to be back tomorrow with the aforementioned encouraging thought.

With one more "thank you!" for your concern,
Jenny
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Jenny,

I was just wondering how your appointment went with the endo...Crossing my fingers for you!

Julia
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Hi, Julia--

Once again, I feel apologetic about being slow to send you a note. The increased dose of medication, which I started yesterday, cleared away a lot of my cognitive fog almost right away. I finally have been able to deal with a backlog of chores that I knew were stacking up; I was just too fuzzy to be able to figure out priorities and then start dispatching the chores.

Consequently, a lot of my day today has been spent catching up (or starting to).  Before I leave for the day, however, I do not want to fail to send you my thoughts about a trial dose of levothyroxine.

Either I have not mentioned the following background information or else it might help you if I repeated it. When I was diagnosed with hypothyroidism, it was on the basis of a TSH level of 4.11. I did not yet have any of the common symptoms of hypothyroidism. To the contrary, my one and only symptom worth complaining about was a set of sleep disturbances that had been bothering me for three years and had been steadily worsening. Although my endocrinologist said that my TSH level warranted treatment with medication, I had no enthusiasm whatsover. I intended to give the matter a lot of careful thought.

Then by mid-July, some of the common symptoms of hypothyroidism began to be apparent to me. I also had a general sense that my body had become prone to going a little haywire in odd ways. My endocrinologist suggested that I try taking 25 mcg. of levothyroxine and see if I felt better. I do not like taking any more medications than I have to, and levothyroxine sounded potent and therefore scary to me. My endocrinologist put the dosage level in perspective for me by pointing out that 25 mcg. is the weakest dose manufactured. He also said, "If I saw a patient who had a higher TSH level than yours but who also was in her 90s and medically fragile, I would not think twice about starting her on 50 mcg. a day."

All the same, I hesitated. In addition to sleep disturbances, I felt abnormally warm a lot of the time. As I developed still more of the common symptoms of hypothyroidism, I began to wonder if I had two different medical conditions going on at the same time, with the cause of my sleeping problems and abnormal warmth being still unknown.

By the first part of August, I was feeling unwell enough from my thyroid gland's struggles to think that I simply had to take action. Having done some reading, I had come to feel comfortable with the idea of levothyroxine. Yes, it is indeed potent, but so is the hormone your thyroid gland produces. In fact, in regard to chemical structure, your body cannot tell the difference between your own thyroid gland-produced hormone and the thyroxine that you swallow in a pill. "Potent" is not at all bad if your thyroid gland is not producing as much of the hormone as you need.

I had acquired enough bits and scraps of information from my jobs of bygone days to understand the concept of paradoxical effects--meaning effects that are the opposite of what would be expected. For example, someone who reacts to a minor tranquilizer by feeling jittery is experiencing a paradoxical effect of the tranquilizer. (By the way, I have NO idea what your vocation is, so let me apologize for talking down to you in case you already know all about everything I am saying.)

Finally, I had a make-it-or-break-it conversation with my endocrinologist. My primary goal on that visit was to ask him whether my thyroid gland's struggles could be causing paradoxical symptoms. It is barely an exaggeration to say that I was terrified when I realized that he might possibly say immediately, "No; no way." As I look back at that moment, I cannot begin to imagine what I would have done if he had said an adamant "No." Instead, he responded by leaning back in his chair, staring at the ceiling, and thinking hard for a very long time. It might have been for as long as twenty full seconds. Finally he leaned forward again and said, "I don't know. We (meaning the field of endocrinology) just do not know enough to be able to say."

That was all I needed to give me the courage to experiment. I was all the more willing because my endocrinologist made a good suggestion. He understood and was sympathetic about my fear that levothyroxine would make my already substantial problems with sleeping even worse. He suggested that I cut the 25-mcg. tablets in two and--for 10 days--take 12.5 mcg. a day. The drug builds up in the bloodstream somewhat slowly, so it would take 10 days to see if the drug made my most vexing symptoms worse still. If it had done so, then I could have stopped taking the pills. Even though I did not know then as much as I know now about levothyroxine, I could tell that my endocrinologist is a careful physician. I trusted his accuracy when he said that stopping the drug abruptly would cause no harm whatsoever.

It was such a little bitty dose anyway.... My endocrinologist said that it was too weak a dose to make me feel any better, but it would be sufficient to see whether it made me feel any worse. If it had, the increase in my problematic symptoms would have been slight, not dramatic.

When I read your comment that you were VERY hesitant to start taking the bovine thyroid that your general practitioner prescribed, partly because you did not know what was in it, I had all sorts of sympathetic vibrations. I am not a pill-popper at all. I am reflexively suspicious of any medication. In regard to medications for hypothyroidism, I am not at all comfortable with the ones derived from animals, as you probably have figured out.

On the other hand, my viewpoint about laboratory-produced levothyroxine has done a complete about-face from what it was last June. I now understand that it is a true replacement for what a person's thyroid gland no longer produces adequately. It is horrible to think that some people with normal thyroid glands have taken levothyroxine with a hope that it would speed up their metabolism and help them lose weight. Too much thyroid hormone is as harmful as too little, as anyone with hyperthyroidism will attest. If you really need to supplement what your thyroid gland is producing, however, then levothyroxine is as close to completely benign as a drug can be.

It remains to be seen whether the endocrinologist will want you to start taking a thyroid hormone drug after she has assessed your situation. As I commented yesterday, she might want another test or two to clarify your situation. The one thing I doubt HIGHLY is that she will think your problem really is a psychiatric one. There is a lot in your list of symptoms that all but shouts "endocrine system."

At any rate, if taking a thyroid hormone drug is her recommendation, you might want to ask about starting it in the way I did--ten days worth of half of the weakest dose manufactured.

Meanwhile, did you happen to talk to your primary care physician about tapering off the psychiatric medications you have been taking? If not, could I suggest that you mention it to the endocrinologist? I know that for some antipsychotic drugs, it is a bad idea to stop the drug abruptly, but there would be no harm in tapering off something that is doing you no good anyway. If the recommendation is that you take a thyroid-related drug and you decided to give it a try, it might be easier to tell whether it was having a positive or a negative effect if you did not have another heavy-duty drug in your system. Minor tranquilizers such as diazepam, that are given on a "take as needed" basis, would be very unlikely to muddy the picture, is my impression, but I question whether it would be a good idea to start taking something related to the endocrine system while also taking a antipsychotic.

Your endocrinologist will be the best judge, of course. I am ONLY a layperson! My intention is to toss out some possibly helpful ideas that you can use in your discussion, if you want to.

As I mentioned yesterday, I have one more thought to send to you before your phone appointment. I am working tomorrow (which means having internet access), so I will be sure to write to you then. For the moment: I have been thinking of you and wondering how you are doing. A few days' wait to talk to a specialist can seem like half a lifetime when a person is as far down and out as you have been. I hope that you are holding your own.

With caring and sympathy,
Jenny
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Dear Jenny,

Thanks again for your highly informative, caring posts. You are indeed right when you say that it can feel like a lifetime waiting for an important appointment. I have been pretty unwell lately - elevated temperature, stiff muscles, vertigo....I rang my doctor and she thinks it's "Neuroleptic Malignancy Syndrome" which is a rather scary side effect of the antipsychotics. I've been told to monitor my temperature and get to hospital if it goes up too high...I'm not sure if my symptoms are a result of the drugs or something else...In the initial stages of this illness, I had a few bizarre fevers in the space of 3 weeks. This leads me to think that I may have some kind of autoimmune condition such as lupus. I'd be lying if I said I wasn't terrified, but I'm trying to remain positive!
It is very difficult to see my cognitive function decline...I think this is probably the most distressing part. I am a French translator and teacher and translate a lot of very complex medical reports. Now, I am incapable of even understanding them! I currently feel as if my years of university study have gone to waste!
I am so glad that your brain fog lifted on the new med dosage. Keep climbing that mountain.

e-hugs
Julia
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Good morning, Julia--

As soon as I came into my office, I read your latest note, and I have cleared away my super-high-priority tasks as quickly as possible to send you part of a reply. I have reasons to hope that you do not have something as catastrophic as lupus, but before I explain my reasons, let me hasten to say that you have every reason to feel terrified. I want to be careful NOT to do to you what was done to me a few years ago.

A few years ago was the time when I finished graduate school, moved to the Washington, DC area, and had good medical insurance along with my new job. I had had a long spell of symptoms that loosely could be termed "neurological" along with significant muscle functioning problems. I had reason to think that the symptoms all were odd manifestations of the hormone shifts that go along with being in the perimenopausal stage of life. Nevertheless, it had been my goal to have my situation assessed once I had good medical insurance, just to be sure nothing was seriously wrong.

I found my way to a gynecologist who specializes in menopause and who I had reason to think was competent (which I have believed more and more over time to be true; he is very skilled and astute). Before my first visit, I organized my medical history on paper, hoping to enable him to absorb easily what had become an extensive amount of detail. After he carefully read his way through a list of symptoms I had had over the previous few years' time, he said, "Have you ever been assessed to rule out a demyelinating disorder?" When I said, "No," he hastened to say, "I really don't think you have something such as multiple sclerosis, but it would be a good idea if we had you checked over, just to be sure."

Having once worked as a nurse's aide in a neurological unit of a hospital, I thought I knew about the characteristic signs and symptoms of multiple sclerosis. In my own mind, I had ruled out the possibility long before. My new gynecologist's comments caused me to do some reading, however, and I very soon felt as if my own personal world had completely stopped turning. While I was waiting to go through the process of having my symptoms assessed, I mentioned to a co-worker the extraordinary stress I was going through. I almost had to say something to explain why I was having a difficult time focusing on my job. It was a real effort to push my fear to the back of my mind and keep it there during the working day.

The response I got was well-meaning, I know, but to have my co-worker tell me that it is all too easy to slide into catastrophic thinking, and I should pull myself back out of that frame of mind, only made me feel that she was discounting and dismissing an acute emotional distress that was well based in reality. What had unnerved me was my gynecologist's nonverbal communication. At the moment at which his words and tone of voice were saying reassuringly, "I really don't think you have something such as multiple sclerosis...," his facial expression and body language were betraying the fact that he actually was more than a little concerned about the possibility.

Moreover, the physician who oversaw the assessment stopped short of saying that he thought I had nothing about which to worry. He compassionately urged me to remember that even the scariest symptom is always somewhere on a continuum. Although "serious" is one end of the continuum, "benign" is the other end. Then he took a thorough history and did a very thorough exam, but he was a little concerned, too, as he arranged for tests of nerve impulse transit times and the electrical activity in my muscles.

As for my co-worker, not only did I feel unsupported at a moment in my life when I needed all the emotional support I could get, I then felt oddly foolish when the high-tech testing was finished and my co-worker wanted to know the results. At a time when I felt hugely relieved and should have done nothing but rejoice, it felt quite bad, I remember, to tell someone who had downplayed my former anguish that indeed, I did not have a serious disease of any sort.

So as you read the encouraging thoughts that follow, please know that I know you have every reason to feel nothing short of terrified. You are in the horrible position of having a set of symptoms that fit quite nicely under a wide variety of diagnostic umbrellas, some of which are a lot worse to stand under than others.

Wait...before I offer the encouraging thoughts, I think I should give you a bit more background information about me. It will help put my thoughts into context. I think you already know that I grew up in a troubled family situation, and that as a result, I had a long stretch of psychotherapy in my 20s. Going through the repairs to my psyche were a bit rough during certain parts of the process, but I came out of it with a high level of emotional health. Sure, I have the odd neurotic bits and pieces that everyone has in his or her psyche, but for the most part, I stay on a very even keel emotionally, and I cope with life very effectively.

After investing time and energy in repairing my emotional infrastructure, I invested a lot more time and energy in formal education. I had loved each of the jobs that I had during my years of working on my emotional health, but I wanted to find a vocation that would challenge me to the fullest. Being someone who always liked the concept of jobs and workplaces--I can remember this from my childhood, when American girls my age were supposed to be thinking dreamily of being a homemaker someday--I was searching during my years of schooling for a vocational outcome that would be ideal for me.

I am now in a stage of my life that I have termed "cash-in time." I am cashing in on all of the intangible investments that I made over many years
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Dear Jenny,

Thank you again for your post. Your kindness and compassion are overwhelming and of far greater benefit  to me than any psychiatrist I have spoken to in the last two months. I think one has to have gone through a great deal of suffering and pain - as you obviously have - to truly understand the suffering of others. You wear your nickname well!
It is amazing to me that you are still experiencing brain fog - rarely have I corresponded with someone who expresses themselves so well...I can only imagine what your brain is capable of when you have all pistons firing!
I rang my doctor yesterday after a fairly bad flare-up of symptoms yesterday afternoon. I could barely walk or hold my head up due to the vertigo and almost went to casualty (I think you call it the ER in the US). She told me to stop the anti-psychotics immediately (I had already been reducing the dose steadily over the past two weeks) and I don't feel too bad this morning...I just hope it lasts.
I hope you are feeling well. The friends you spoke to me about and whose company you cherish are very lucky to have you.
Warm wishes
Julia
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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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Hi, Julia--

I am writing with two postscripts. One is related to your saying in your last post that you have been pretty unwell lately. If I felt as unwell as I am guessing that you are feeling, then I would find it difficult--intuitively--to believe in the possibility that whatever had gone wrong inside of me could be straightforward and reversible. Again, I want to be careful not to seem to be downplaying your fear. You have every reason to have it.

With a voice of experience, however, I want to say that it probably is impossible to overestimate just how ill an endocrine system problem can make a person feel. Today is Day Three for me of the increased medication level. The day started so well that it was almost difficult to believe I ever had a medical problem. I actually entertained the idea that at the new dosage level, I might be out of the woods.

Since then, I have drifted far back into those "woods."  Given my patterns of symptom/medication relations over time, I am not at all surprised that Day Three is not going well at all. I am just reminded by my striking unwellness this afternoon that it is easy to feel, on a gut level, that surely something must be much more wrong inside than what the problem really is.

My second postscript is as follows. Since your physician thinks that you may be having a scary side effect of the antipsychotic medication(s) you were given, I am curious as to whether she is having you taper off that drug (or those drugs). If it is too much for you to explain the situation, however, then please just say nothing about it. For the first three and a half months of taking medication, it was so difficult for me to put written words together that all my capacity was used up by the writing that I needed to do in my job. I could not participate in the forum beyond reading other people's posts. Since writing ordinarily comes as easily to me as breathing in and out, I understand the concept of "just not up to it" with the deepest understanding possible.

Here is an easy question: What day is your telephone appointment? Given the time zone difference between us, I want to be sure to send you the last of my possibly helpful thoughts in time.

Sending you caring thoughts across the miles,
Jenny
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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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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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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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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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Hi, Julia--

I know that as I am writing this, it is just before 6:00 A.M. your time, and I am wondering how you are feeling as you look ahead a few hours. Maybe partly relieved that the time for the telephone appointment finally is almost here (after what must have seemed like a small forever's worth of waiting) and partly concerned in any number of ways (whether the physician will have as good an interpersonal manner as you think she will, whether you will be able to communicate with the clarity you would like to have, whether she will have hopeful answers or worrisome answers... or any answers at all)? I am only guessing at what you might be feeling, but I am sure that whatever you are feeling, it is a mix.

This is the first moment I have had in which to drop you a line since 1) my day away from the office yesterday (it felt so good to get some long-neglected errands run), 2) my meetings this morning, and 3) my clearing away the high-priority matters that had developed while I was away. Now I am going to check my "chores" list to see if I have overlooked any of the big priorities, because I leave in 30 minutes to see my rheumatologist.

You are not a chore, though, so before looking again at that chores list, I wanted to take a minute to say that I have been thinking about you. I shall continue to do so, I know. When I come in tomorrow morning (at which point it will be very late on Wednesday night for you), I will check first thing to see if you have had a chance to write.

Sending you lots of supportive hugs,
Jenny
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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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Dear Julia,

You are VERY welcome for my words of support and also for my being a rock for you, which is what I really want to be. It is interesting how clearly a sense of a person's personality can begin to come through in writing. I first noticed this several years ago, when my work on my dissertation had me e-mailing a lot of scholars from whom I needed some information. The character of the person (whether laudable or otherwise) was apparent with many of the people I contacted.

In regard to you and me: I sense our having a lot in common, and I think we would have quite a wonderful conversation if we could sit over tea together. I have come to care about you authentically, in other words, and feeling that I can be an anchor for you helps me to be patient about the ways in which my own well-being still sways to and fro.

I know that your telephone appointment is now behind you, assuming that nothing in the physician's schedule caused a last-minute rescheduling (a horrible thought, but it did cross my mind yesterday). As I am writing, it is 3:30 in the morning on Thursday. I hope that you are asleep, although I know it is not a given!

Whenever you are able to log on and let me know how the discussion went, you will do so, I know. In the meantime, I am thinking hopeful thoughts. When is your birthday?

With hugs and lots of hope,
Jenny
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Dear Julia,

I am back again, having looked at your latest note. As I began to read your account of the telephone conversation, my heart sank when I read that the doctor was not at all what you had been led to expect interpersonally.

There is one part of what happened that makes me feel hugely relieved, however--the fact that someone who certainly seems to have adequate expertise for making a judgment has considered your medical history and symptoms as a whole and says "thyroid."  I would not have been at all surprised if she had wanted more tests to rule out some of the complex, multi-component endocrine problems that people can have. For example, it is easy to have adrenal insufficiency either masquerading as or co-existing with hypothyroidism, is my impression. The pituitary gland can cause trouble, too.

In addition, there was the possibility that you were very frightened of, and I knew it was a real possibility, even though I thought there was a solid reason to hope that the physician would rule it out. This is where my being hugely relieved comes into the picture. I am relieved to know that the doctor had no suspicions in the area of the nasty systemic diseases.

The telephone discussion really was a mixed bag, and I am sorry for you on that score. It would have been nice if you had received the news that you did with some warmth and compassion communicated at the same time.

I have more that I want to say--both in reply to your latest note and in reply to previous ones. There were some comments I wanted to make on Sunday evening (DC time), but I was pushing myself out the door so that I could get a reasonable amount of sleep before my day of errand-running.

My brain seems to be shutting down for the night, however, and I am nervous about the borrowed-computer part of my set-up of the moment. There should not be any greater risk of having a bunch of writing go straight down the drain on this computer than there is on my own, but it feels riskier. Therefore, let me just say, "Whew!" and sign off for the time being. I will be back tomorrow at some point, though, with my additional thoughts. Actually, first and foremost, I will look to see if you have set up a direct link for us, which will be much, much more satisfactory. I am glad that you raised the question!

With hugs and best wishes,
Jenny
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Dear Julia,

Let me answer your last question first. Instead of thinking about whether it is all right for us to trade e-mail addresses, I would rather just give it to you and welcome your using it. What could it matter? This thread became a conversation between you and me alone quite a few posts ago, and since the thread has become quite long, and since this is an unmoderated forum, I doubt highly that anyone will notice or care. My address is ***@**** ("wonk" as in "policy wonk"--it is a reflection of my present vocation.)

Here comes one of my considerate "facetious comments coming" warnings, since I know that cognitively, you may be surrounded by fog at any given moment. My comment is that if anyone does notice or care, the very worst that could happen would be our both being led away in handcuffs. When compared to what each of us has been through, that seems pretty mild, doesn't it?

I am at my friends' house at the moment, on duty while their baby sleeps and they go out for a glass of wine, so it means that I am on a borrowed computer. I am not as adept on their computer as I am on my own with switching back and forth between the thread and my comment. I want to look again at what you said, so I am going to send you this post and then be back in a minute....
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Dear Jenny,

Thank you again for thinking of me. I can never say thank you enough...

I spoke to the doctor yesterday. She rang me at 2 o'clock on the dot for which I was very grateful! I was a little disappointed with how the conversation went because she sounded hurried and a bit grumpy which is not what I was expecting. However she did say that I very probably had a thryoid condition and has prescribed me Armour. It has to be sent from Sydney so I won't receive it until Friday. I have heard both positive and negative comments about Armour but at this stage am willing to give anything a go! So the adventure begins...

I agree with you in that we have a lot in common and maybe one day we could meet...That would be wonderful. I have been to Seattle, Hawaii and New York and had such a brilliant time - especially in NY. I have heard that DC is great. At the moment, travel is an impossibility, but maybe someday I'll get there! It's crazy to think that I was in France in only September last year and am now almost unable to leave the house.

By the way, my birthday is on April 12. I'll be 32.

Do you know if we are allowed to give out our email address on this forum? Maybe it would be easier to correspond that way (only if you are comfortable with that of course).

Have a splendid day

Julia



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I have gone and lost my mind! Please  HELP.  Is there anything i can do while I wait to see the specialist?   lost my insurance when they were going to test me about 6 months ago

ok here is the history, I have been tested for thyroid for about 8 years, since 1999.  I went to this specialist he was a complete jerk and I didn't go back.  I moved around a bit, my biggest complaints at the time were my hair falling out.  

My family doctor and i have been watching my levels for the last 2 years.  I have a goiter, and sometimes it is more swelled up than other times. Same with my blood levels, sometimes its high sometimes its not.  The last time I was at that doctors, she was sending me to a specialist, however personally things went from bad to worse, and I left my husband.  I ended up partially homeless, staying with family.  I havent' been able to make a darn decision in months, I will decide on moving back home then something else happens, like the thyroid issue, and i change my mind, then i decide that it can wait and I change my mind back.  This has been happening in one way or anyother for months.  

So I have had the shakes for atleast 9 months, I thought it was stress, and have been taking xanex.  I have been on depression medicine also.

The doctor in cali, told me it was hashimotos disease, however I just got insurance, and my TSH is 20 and my t4 .02  

everything seems like its suddenly crashing in on me.  The shaking is getting worse!  And I feel nuts.  I have a new job I can't work , i write for a living and I start a sentence and forget to finish it, I am really good at what i do, and I have a high IQ,  I keep telling people really I am very smart.  I think everyone thinks im nuts.  

So major brain fog.  

Hives  - I was at one point told i had I think it was scabies. but they are hives.

told i have IBS,

Tired, I sleep alot. still feel tired.  

Been hospitalized for chest pains, told maybe premenapausal, at 34

Heart palpatations.

sweats sometimes not always.

I eat like a horse for two weeks out of the month, and am still skinny.

my pulse averages 120 all the time.  

I feel like a wreck, I look terrible,

All of this is happening, and friday is my 40th birthday, I have three kids who have been through hell and back in the last six months and I can't make any decisions.  Almost sent them to live with their dad tonight, which is major cause he is in Dallas and works midnights, he can't take care of them.  If I can't work Im affaid Im going to lose my job.  

I need someone who has been here  to tell me if this gets better?  Will  I ever feel normal again, once i do the radioactive iodine, or surgery will I gave a ton of weight?  How does the meds help once its taken care of? Can all this damage to my body be reversed?  


I feel like im deteriorating before my own eyes.  

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