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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!
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
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
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.
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
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
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
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
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
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
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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