TSH levels went up instead of down

[dre22]

I have been having a lot of problems for years most of which, unknown to me at the time, were symptoms of hypothyrodism.  Well, I was diagnosed last March with Hypothyroidism.  My Thyroid level itself came out to be at 2.3, where the "bottom" level s/b 4.0, according to my doctor.  He was very alarmed, and I was having a lot of problems with my limbs swelling, exhaustion that sleep could not seem to cure, and not being able to function, or retain what I was studying very well.  I was a mess.   My TSH levels at the time were over 47, which he informed me was way too high (.5-2.5 is the norm? - not sure on this).  Anyhow, it has been almost a year now, and I still am not regulated.  He was able to get my TSH level down to around 9, but it was slow progress, so he increased my dosage to 200 mcg./day.  But, I still was not feeling well, and having the same problems.  They took my blood again in six weeks, and my TSH levels went up, instead of down. They are now at around 15, so he increased my dosage to 300 mcg/day, with the next blood test scheduled for 4 weeks from now.  I also suffer from FAP (Familial Adenatomous Polyposis- not coli, just FAP), and had to have my colon removed around 15 years ago.  I am currently 42 years old.  The doctor also checked my hormone levels for menopause, and he informed me that I am not menopausal.  I am worried that there may be some other problem.  I also have tried to diet, and cut back on eating, but I end up feeling nauseous when I do so.  Please advise.

[EmpatheticJenny]

The doctor who has been treating your thyroid problem is an endocrinologist...right? No one else should be messing with a situation like yours. Before you do any more worrying about whether you have a problem in addition to your thyroid, it might be wise to see another endocrinologist and get his or her "take" on your situation. It is a complex situation, especially because you have had your colon removed. I do not know if that would have any effect on the absorption of medication (I am ONLY a layperson), but I would want to ask a good endocrinologist that question.

A good next step for you to take might be to search for an endocrinologist who seems to be top-notch (can your general practice doc or NP help you identify someone?). If you have to pay someone out of your own pocket for a one-time consultation, it would be more than worthwhile. To get the most bang for your buck, it will be important for you to organize all relevant information--lab results, but also an overview of your symptoms, when each one started, how it has varied over time, how it has seemed to interact with other factors (such as your menstrual period).

You are now taking quite a high level of medication and still not feeling well after a length of time that should concerns me.  I am concerned that you are not getting the high quality of medical help that you really need.  I am doubly concerned because every symptom you describe has "THYROID!" stamped all over it, including nausea. By the way, you will not find nausea in response to not eating in the standard lists of hypothyroidism, but believe me, there is a connection.

In other words, your overall situation just does not seem right.  If it has a "not right" feeling to a layperson and feel hypothyroid sufferer, I wonder what it would seem like to a highly competent endo. doc? I hope that you will go after an answer to that question.

[EmpatheticJenny]

One more comment: If you decide to have your medical situation assessed by another endocrinologist but you are not sure how to find someone who is highly competent, I suggest that you post an inquiry to the forum members. I am sure you would get lots of good ideas.

[dre22]

Thank you so much, but in all honesty I do not yet have an endocrinologist.  I do have a primary care physician, and have finally been able to visit a gastroenterologist, but he said everything looked fine, and sent me back to my primary care physician.  I am trying to get an appointment with him, so I can get a referral to an endocrinologist and get my Thyroid ultrasound done.  I have had the worst time trying to get through though, but I will keep trying.  I also have only been back a week from my mom's, and am in the process of trying to find a job, just got a new car, finally (2006 pt cruiser), and a new, very nice Macbook Pro for school.  Now I have to find a job to make it all worth it.  I just have no energy right now, and am really not feeling well.  No one understands either, even I don't.  I should have found a job by now.  Even my roommate gets frustrated with me. This has dragged for almost a year, and I know everyone sees me as so lazy, even I do, but I really can't seem to get it done, or to concentrate very well, unfortunately.  I feel nauteous, and am lightheaded right now, so I better go.  Take care everyone..

[EmpatheticJenny]

Something in your comments made me think that maybe you are not being seen by an endocrinologist, so I was not surprised to see you say that your primary care physician has been treating you. I am glad that you are pursuing a referral to an endocrinologist. As I commented before, no one BUT an endocrinologist should be messing with a situation like yours.

For the moment, please try not to be hard on yourself, and please urge all the interested onlookers to your life to read my comments that follow.

I have a very mild case of hypothyroidism. The challenges to daily functioning that I have faced are very small challenges compared to yours. All the same, it rang big bells with me when I read your comment "I just have no energy right now, and am really not feeling well." Not only can a thyroid problem pull the rug out from under you completely, but there can be a sneakiness to it. The rug gets pulled out a little at a time. Before you know it, you barely have the energy to take care of the simplest tasks, your ability to concentrate is gone, and you think, "How did I get here?" The situation is even worse than that, however, as I indicate in my last paragraph. You probably do not know how far down into the "ditch" of unwellness you have gone in your slow slide downward. (Pardon my switching of metaphors!)

Ironically, I am in the middle of the happiest time of my life (I am 56). I say "ironically," because this past summer, when my thyroid problem finally pulled enough of the rug out from under me to make its problem apparent, I reached a point at which I authentically did not want to go on living. An essential piece of background information is that for medical reasons (too boring as well as too complicated to be worth explaining), I waited for five weeks to start taking medication after the need for the medication was obvious and my decision had been made. I was not in the slightest bit suicidal, I was just so entirely unengaged emotionally with the world around me (even though I knew in my mind that it really is quite a wonderful world), and I was so tired all the time, that if you had handed me a button and told me that pushing it would magically and painlessly end my life instantly, I dread to think what I might have done.

I know that you are not lazy, even if other people (you included!) see you that way. I also feel certain that you do not really know just HOW unwell you are feeling right now. Once you feel better and can look at this moment in hindsight, then I am sure you will know that my "Do not be hard on yourself" advice was on the mark.

[dre22]

Thank you Empathetic Jenny.  I so appreciate that.  I found out that my doctor retired so had to see a new one this morning, and found out that 300mcg, was too high for me.  My test results came back at .03, so I now must take one 200mcg, and one 50mcg. pill every morning, and hopefully this dosage will work better.  This morning was really rough for me.  I woke up with the worst case of vertigo, very much like some other episodes I have had.  I don't know what it is, but I tend to link it to the hypothyroidism, becuase it has been a few days since I had my last pescription, but I was sick this morning.  For some reason my balance was way off again, and my body kept wanting to center me to the lower right so I kept verring off and down in my walking, and had to force myself up and to the left to try and compensate.  It was rough for a couple of hours.  It really gets me when my body does that, it feels as if I am on some heavy drug, or extremely drunk.  But, I wasn't drinking.  It finally passed, thank god, but I feel real tired now.  I also have to wait until tomorrow now for my prescription, making it another day that has gone by without my meds.  I am sorry, and don't mean to be a whiner, but god I feel pretty shitty right now.  I just want to feel normal.  Hopefully this does will do the trick.  Thank you for all of your help,a nd take care of yourself.  I will write soon and let you all know how it goes.

[EmpatheticJenny]

Oh, I am SO tempted to say to you "Sit down and write 100 times: 'I am NOT a whiner,' 'I am not a whiner'..."!  You are far too tired for that, though, so I am going to let you off the hook by just lecturing you in a very caring spirit.

Before I lecture you, though, let me tell you something reassuring. I have a weird "grab bag" of symptoms with neurological overtones, although I have had my "wiring" checked carefully, and nothing is at all wrong.

The symptoms started in 1994, the summer when I turned 44. One of the first ones was exactly like what you described. My body wanted to center me in an odd way. It was always a left-drifting tendency for me. When walking down a hallway, for example, I would have walked diagonally right into a wall if I had not consciously forced myself to walk in a straight line. This went on day after day for several weeks.

Toward the end of summer, the "neurological" weird stuff faded away, but I went on to have other symptoms on a come-and-go basis. Vertigo has been one of them. Twice, my brain has produced vertigo in an unusually creative form. I would awaken in the morning feeling just fine, lying on one side, and as I lifted my head off the pillow, I would feel as if an unseen hand was pushing my head back down. It was a weird feeling, but not as weird as some of the other symptoms that my brain has produced from time to time.

All of this seemed to be related to the perimenopausal stage for me, but now I am not so sure. I have a mild case of hypothyroidism, probably as a consequence of having had radiation treatments for acne in the last 1960s. As I reached middle age, I do not think there came a point at which my thyroid gland suddenly went from normal to struggling. I am sure that thyroid insufficiency crept in slowly and steadily over a long period of time. My thyroid problem may have been revealing its presence in 1994, and it may have been interacting with falling estrogen levels, too. What you said in your comments, and what I remember from the time when my hypothyroidism was worsening (as seen through a hindsight look at TSH levels along with symptoms), seem like evidence of a connection between thyroid problems and weird experiences that seem to have a central nervous system source.

Here are three things that I hope you will remember:

1 - Theoretically, it would make sense for a malfunctioning (or underperforming) thyroid gland to cause all sorts of odd neurological symptoms that are perfectly harmless. It always is good to describe odd symptoms to a physician and be sure that the symptoms are not of concern to the doc (although beware of over-reacting physicians who will run a bunch of tests--and boost your worry level--in response to something that does not warrant a big reaction), but it makes sense that my neurological symptoms have been shown to be harmless and that they may have been coming from my thyroid gland. It seems like a good bet that you are like me in these ways.

2 - Sensations such as you described (and really, you could have been speaking for me) tend to freak out the person who is experiencing them, and understandably so. After I was assessed carefully and a neurological disease was ruled out, I became relatively skilled at ignoring the most outrageous kinds of sensations, but until I became accustomed to them, and until I had the symptoms adequately assessed, it was very unnerving to have something such as a stubbornly off-center body (or the sensation that my two arms are operating independently of each other, as if they are connected to different brains--that is another of my brain's favorite oddities).

In your comments, you did not say that feeling freaked out has been part of what was making your day a bad one yesterday, but in case it was, then these "three things to remember" might be helpful to you. Part of my reason for making these points is that I hope to "goof-proof" you so that you will not feel freaked out if you develop other neurological symptoms. I can tell you that quite an assortment is possible.

3 - Medical research into hormone-related difficulties is in a very early stage. The research literature does not even contain reasonably complete descriptions of what patients who are perimenopausal or patients with a thyroid problem (or both) are experiencing. (When I once made this comment to a seemingly very competent gynecologist, he agreed.) There are people like me who have reported odd symptoms to a physician, and the physician concluded that the symptoms were hormone-related, but the information does not go anywhere in the sense of being shared widely with other physicians or patients.

Now for the lecture. Didn't I tell you just yesterday not to be hard on yourself? ;o) You need to listen to Jenny!

Seriously, I feel vast amounts of empathy for you. My hypothyroidism has been much milder than yours, and I know how unwell I have felt at times. There is a uniquely punishing quality to the condition. Part of what makes it punishing is that the symptoms often come at you from so many directions at once--fatigue, fuzzy thinking, swollen limbs (one of my symptoms, too), and a few others. Then when still one more symptom, such as vertigo, sneaks up on you from still another direction, it is rough going for sure. I know exactly what you mean, I think, when you say "It really gets me...."

If all of that is not enough, there is the way hypothyroidism can affect you emotionally, sometimes in ways that are obvious and sometimes in ways that are not obvious at all. It is easy to feel as if you have deteriorated into whining when you really are having no more than an understandable reaction to your non-trivial discomforts--all the while not realizing that your thyroid gland's struggles are affecting your emotional reactions to difficulty (over-reaction) and also affecting your usual ability to cope (reducing your ability by quite a bit). This is what I discovered in hindsight, after an increase in my levothyroxine dose suddenly caused my normal coping ability to return. I had not realized how much coping ability my #$%^&* thyroid difficulties had taken away from me until I got all of the ability back again. You may be in the same leaky boat at the moment.

You are entirely welcome for my help! Thank you, in return, for the "take care of yourself" thought. It boosted my morale.

Please do keep us all posted.

[dre22]

thank you so much Jenny, and I understand how you feel.  There is little worse than waking up and turning your head to get out of bed, only to have it spin, then when you try to sit up you cannot get your balance, and walking to the bathroom, seems almost impossible.  I know it sounds crazy, but god, it is scary...the inability to get your balance, and constantly being forced to one side is very scary...It was like the 6th time or so over the last few months it has happened.  But then I found out that my dosage was too high.  We were having so much trouble getting my Thyroid to normal range, that the doctor put me at 300mcg. per day.  Now I am down to 250mcg. (one 200mcg pill, and one 50mcg. pill) per day.  My mom worries now that it maybe a brain tumor.  We just found out yesterday that the bruise on her shoulder turns out to be part of metastatic lesions on her skull, and spine, which the doctor said means that the inoperable cancer wrapped around the bloodsupply to her intestines has now moved to her bones.  I am a little scared about my mom's condition, but less so about mine because I am feeling better, and now have my meds.  But the cause of her cancer is the same FAP that I inherited from her, and that one of my cousins has an inoperable brain tumor from as well, so it is always in the back of my mind.  I have an appointment for 2/5 with my regular primary care physician to see if he can schedule me for an ultrasound and set me up with an endocrynologist, although I am not sure if he will oblige.  It is difficult to get things done through the County, and takes much longer to do so, unfortunately.  But, I am still trying.  I went for an interview for a job today, and did some testing for the same job.  I am supposed to be scheduled for another interview at the job site next week sometime.  We will see.  I am so glad for all your support, and I hope you all take good care of yourselves.  Thank you Jenny, and everyone.  Take care all of you, okay?  I will keep all of you posted.

[EmpatheticJenny]

Dear dre,

You are SO welcome, and thank you for your understanding in return. I do not think it sounds crazy at all to say "god, it is scary" about the kinds of sensations that you and I can have! Having read your response to the comments I made yesterday, I am glad that as I made comments, I included a few specifically designed to help with any freaked-out feelings you might be having.

Considering your family history, I can see why you have even more reason that I have had for feeling very unnerved. In addition, when you do not have medical insurance, it adds a big level of frustration, since it is so difficult to get adequate care. I am crossing my fingers in a big way as you go for your second interview. I went from having no insurance to having relatively good insurance, so I think I know how you feel.

In my "no insurance" days, I limped along as best I could with medical care from a student health center (where all stereotypes about the low quality of care in university or college healh centers applied in full). After graduating and getting a job, I wanted to have my neurologically weird symptoms assessed, just to be sure I did not have a serious underlying problem.

I have A WORD OF WARNING: If you start cruising the internet, reading about demyelinating disorders (such as multiple schlerosis), you easily can scare the living daylights out of yourself. You are likely to see symptoms described that sound just like what you and I experience. A neurologist would see important differences that were not at all obvious to us jumpy, scared laypeople.

I gave you that warning because you are doing SUCH a good job of keeping your situation in perspective; it would be too bad to have your perspective messed up by something you read. It sounds as if you have seen a pattern between your "neuro" symptoms and your thyroid struggles, leading you to think that there is a cause-and-effect connection. I am sure you are right.

In fact, I cannot wait to show my rheumatologist your description of your body's odd sensations. It will be the first time that either of us has seen someone but me describe the sensation of having her brain forcing her body to one side. I will say to my rheumatologist, "Do you suppose it was my thyroid gland causing me trouble all along?"

How many other thyroid patients are out there, experiencing scary symptoms like yours and mine, and never suspecting that they have lots of company? I wonder. As I said yesterday, research is in such an early stage that we do not begin to know the complete list of possible symptoms of a malfunctioning thyroid gland, I am sure.

I am at too early a point in the process of adapting to levothyroxine for me to say for sure that I--like you--see a cause-and-effect connection between my thryoid functioning and my "neuro" symptoms, although I have seen some thought-provoking evidence of that connection. What I can say with certainty (and I hope this is comforting to you) is that it is possible to have a wide array of really bizarre sensations that seem to be coming from some part of the brain, and yet there is no disease process, malformation, or tumor behind the symptoms (and certainly no "imagining things"). I have had oddities off and on for sixteen and a half years, and they all have proven to be harmless and meaningless...although it will be interesting to see if levothyroxine ends them for good.

Thank you for the "take care" thoughts, which communicate your supportiveness as well as being good advice. Please DO keep us all posted.

With hopes for a better tomorrow for you,
Jenny

[EmpatheticJenny]

Hi, dre--

I am going to see my rheumatologist this week, and I plan to tell him about your sensation of your body not wanting to center itself correctly. When I developed a sensation like it (along with a lot of other weird "neurological" symptoms over time), it was at the start of what seemed to be a difficult perimenopausal stage for me.

Just to have some context in which to report your experience, could I ask if you are perimenopausal or menopausal or in young adulthood or in middle age...or whatever question you would be comfortable answering? I know that my rheumatologist will be curious, and I am, too, actually. When my odd "neuro" symptoms started, my thyroid gland was the farthest thing from my mind. Now I am wondering if it was the source of those symptoms all along and if being perimenopausal really had nothing to do with it.

If you would rather not tell me where you are in terms of an age bracket or your reproductive status, that is really okay! I am asking a personal question, I know, and a person always should be able to reply to one of those with "I would rather not say."

Sincerely,
Jenny

[dre22]

empathetic Jenny,

I thought of menopause, so the doctor tested my hormone levels a couple of months ago and they came up normal.  Instead they gave me a prescription to see a neurologist.  I was having some serious balance issues awhile back, but it eventually went away.  The doctor said I most definitely was not in menopause, and that it was most likely my thyroid.  But you are welcome to tell him about me.  If it will help you in anyway I am more than happy to help.  Please feel free.  I hop you don't mind either if I mention an incident I had at the store today.  I am only mentioning it because it really bothered me, and it was someone who is also thyroid.  You know I had a really weird encounter today while shopping, and it would help to have someone to tell it to.  I ran into this woman employee, who noticed me, and as she was showing a man some items, commented "she is crazy," and I couldn't believe my ears.  I got a little upset, and left, but then thought maybe I was mistaken and went back, and she explained herself, but then told me that she was hypothyroid, and started to talk about her condition, and I naturally mentioned mine.  but it was a rather strange encounter in that she kept trying to top me in illnesses, so I just shut up and let her continue.  It was actually a rather uncomfortable encounter, and I am so glad that I have you here Jenny, and the rest of you to understand, and that I can confer with.  This woman left me feeling perplexed, a little flabbergasted, and I oculd not believe this woman's gall.  She acted like she was so proficient at everything, and poopooed my symptoms like I have never seen, actually she did not even let me say antyhing at all hardly, or explain my condition in return. She kept trying to talk me into joining her codependency group.   I felt like I was under attack almost, she was so adamant about lettling me know I was not special, and that my conditions, no matter what they may be could not possibly be worse than hers, so I didn't say anything to her.  But I no longer care to shop there anymore, unfortunately.  Have you ever had an experience like that?  It was awful.  She even afterwards invited me to call her, and go to lunch with her after her job, and told me where her office was downtown.  I politely thanked her, and left, as quickly as possible.  I recognized the woman, but don't know her, nor do I have her phone number, nor the location of her department at her job.  It was very uncomfortable, and I didn't know what to think.  The sad thing is that I try to be understanding, and nice, and smile, and it seems to make it worse somehow, and attract more of it to me.  I think I am doing something wrong here.  I honestly don't know what to think, and am getting a little scared here, by these encounters that I seem to be having.  I hope that you are having an easier time of it than I seem to be.  The sad thing is I was going to apply for a job there, but I now have second thoughts, and did not ask for an application, which might be better for all around at this point.  I am learning that there is not a lot of compassion here in this town, or in the company I seem to attract around me, not that I am seeking that.  I just don't care to hear such negativew statements as, "she is crazy" from a store employee while I am shopping, especially when they seem to have some problems themselves.  jSorry for the negativity, but man, I cannot believe this god awful group I seem to attract around me.  And I truly apologize, for I am not normally so negative, I just don't know what to do, or how to handle this.  it is not the first time I have had this type of encounter, and I don't know where she, or it is coming from, but it needs to stop now.  

As for mentioning my situation to your doctor, you are more than welcome.  And you don't know how welcome your understanding is to me.  It is truly nice to have a truly nice, friendly, and someone who is going through the same thing, and can understand what I am going through.  Thank you so much Jenny, and everyone for your understanding and support.  It has been few and far between for me I am afraid.  but truly thank you all, and take care of yourselves.

[dre22]

and Jenny, you are more than welcome to ask me my age, and such.  I am 42 years old, and was diagnosed at 41, but am not menopausal, at least not according to my doctor, and the tests ran by the lab.  How old are you, if I may ask?  Thank you Jenny for all your help and support.  I wish you were here now, actually.  I could use a friend for support right now.  Take care of yourself, okay?  And let me know what the doctor says.

[EmpatheticJenny]

Dear dre,

Of course I don’t mind your describing the very odd incident while you were shopping! That is one of the huge benefits of this forum. It is a place where we can count on having someone to tell it to, no matter what the "it" of the moment is like, and we can count on being listened to with sympathy.

Out there in the world at large, you never know what might happen. I am a lot like you. Generally, I extend understanding to other people and try to be nice. Sometimes that leads to a very good conversation with someone who is going through a difficult time. We trade understanding and supportiveness with each other and both feel better. Other times, I find myself in the middle of some weird, weird situation that I am in a hurry to get back out of.

So in answer to your question, I have not had an experience exactly like yours, but I have had a few that were highly similar. My hunch is that if you communicate a certain sort of openness, it makes you wide open to the people who are highly annoying or just plain strange. On the other hand, I have been glad when someone I barely knew or did not know at all was in a lot of emotional pain about something and felt comfortable about confiding in me.

I just wish there were a way to communicate to the world at large that I am NOT open to hearing anything from anyone who wants to play "My problems are worse than your problems" games with me, dominate our so-called conversation, say something outrageous about me when plainly I am in hearing, or in any other way be about as weird as the woman was who gave you an authentically rough time. Consider this another area in which you have my understanding! (I did NOT think that you were being negative, either; I thought you simply were reporting accurately.)

You are entirely welcome for that understanding, by the way, and I want you to know how grateful I am for your supportiveness, too. I appreciate your openness about my sharing your story with my doctor. He is a really good guy and a hard-thinking doctor. He will be VERY interested in what I tell him, and yes, I definitely will let you know what he says.

When I asked about your age, it should have occurred to me that if I was going to ask a personal question, it might be nice if I "took the first turn." Not only do I not mind stating my age, it is relevant in a way to my medical situation. I am 56 and a half.  I was able to have a pretty clear idea of when I made the menopausal transition; it was when I was about three months past my 51st birthday. I have read that perimenopausal symptoms can start as many as 13 years before the menopausal transition, and that is about right for me.  

The interesting part of my medical history, when I compare it with yours, is that I and my physicians probably have been missing an important point for several years. Yes, some perimenopausal symptoms that have been identified as related to falling levels of estrogen (muscle pain and sleep disturbances) started in a mild form the summer I turned 38, and they steadily worsened until I began HRT, which was when I was 47. At that point, I was in school and did not have good access to specialized care, but I was able to limp along, you might say, with the care I could get at the student health center, even though the care was pretty mediocre.

In 2000, after getting a job and decent health insurance, I began seeing a gynecologist and then a rheumatologist (both of them very good physicians and really wonderful human beings) for symptoms that seemed clearly related to perimenopausal shifts in reproductive hormones. All three of us have assumed all along that the symptoms I put into the category of "neurological" were somehow part of the reproductive-hormone picture.

There was one part of the picture I never questioned, mostly because when a person has the kinds of odd symptoms that you and I do, one survival tactic is to learn to ignore the oddities, isn't it? What I never questioned was the way the neurological symptoms started the summer I turned 44--independently of the muscle pain and sleep problems, now that I back off to take a fresh look at the picture--and the "neuro" symptoms have not ever seemed to be affected by HRT. They were all symptoms I could ignore, once I knew nothing was wrong inside my brain, although as you have said, it can really get to you when your body behaves in odd ways (I have spells of unbelievably bad balance as one of my long, long list of symptoms over the years). All the same, I was just glad that for the two areas of symptomatology that bothered me the most--muscle pain and difficulties with sleeping--HRT was like a wonder drug.

Now I am looking backward in time at my odd symptoms, looking at what you say about yourself, and thinking, "Well, well, well. Was it my thyroid gland all along?" It probably has been steadily but very slowly (and therefore in a sneaky way) losing its ability to keep up with its workload, maybe because it was damaged by radiation treatments for acne in the late 1960s. For some people over the age of 50, hypothyroidism is simply a side effect of the number of years our bodies have been in use. Whatever the explanation for my hypothyroidism, I easily can believe that it began to make its presence known as long ago as the summer of my 44th birthday. When it began to make its presence known in a big way, three and a half years ago, it still was just subtle enough to elude detection by more than one highly competent and hard-working physician.

Since my "neuro" symptoms have been nothing that my rheumatologist needed to do anything about (beyond overseeing an adequate assessment to be certain that I did not have a serious underlying problem, followed by several years of sympathetically listening to me complain, "This is soooo weird!"), he probably will not do more with the information I take him about your experiences other than saying, "Well, well, well." He is always open to learning something new, however, so I know that he will be interested.  Since my diagnosis of hypothyroidism, I have seen my rheumatologist several times, and he has never put two and two together, linking the oddest of my symptoms with my thyroid gland. One of the reasons the connection escaped everyone probably is that the odd sensations you and I both have had are not on any list of hypothyroidism symptoms, at least as far as I know. Something such as "vertigo" or "dizziness" does not begin to describe what you and I have been through.

I am glad to know your age, when you were diagnosed with hypothyroidism, and that menopause was ruled out for you. Knowing a little about how physicians’ minds work, I know that my rheumatologist will ask. I predict that he will be highly interested in hearing about you and that--like me--he will be interested to see if levothyroxine ends the neurological symptoms as I get established on an adequate dose. I am at an early stage of that process but coming along quite well.

Then I cannot wait to see my endocrinologist two weeks from now. An overview of symptoms that I gave him on my first visit to him included an entire section labeled "neurological." As he went through my long symptoms list, he nodded while saying over and over, "This is related to hormones; this is related to hormones," but he did not try to guess at the specifics of my problem until he had seen results from a bunch of tests. Since then, we have not talked about specific symptoms in relation to my hypothyroidism. Now I want to ask him if you and I are unusual, or has he seen other patients who had our kinds of weird sensations?  

Even if he says that we are unusual, I would bet you that we are not unusual in the world at large. I work in a research-related job; it is social science, though, not medical science. In the area in which I work, we know about two percent of everything we wish we knew, and when I have said that to my physicians, they say that the estimate applies well to the field of medicine, too.  Just simple descriptive research to identify the entire list of hypothyroidism symptoms could be added to a lot, I am sure.

The upshot is that I feel the same way about you as you do about me. It is truly nice to have someone who is going through what I am going through and who therefore can understand. Your supportiveness is wonderful; I am truly grateful to you.

I will let you know what my doctor says after I see him on Thursday.  For now, thank you very much for the "Take care of yourself" thought.  You do the same, okay?

Your friend-at-a-distance,
Jenny
    

[dre22]

Thank you Jenny.  I do apologize as well.  I was actually rather upset, and taken aback by my latest encounter in a store the other day, and thank you for your understanding.  But, I also could not help but notice the friend at a distance closure, and I hope it was not in response to anything I said or did on the forum.  It truly was not my intention to come across inappropriately in any way, or make anyone uncomfortable.  I was just uncomfortable, and didn't know what to think.  I have been gett quite a lot of those type of encounters over the years, and a little uncomfortable with it, more so now.  I am sorry, the whole thing is all so ridiculous, and I can seem to do nothing about it.  I am truly sorry Empathetic Jenny, and thank you for your help.  I will let you be.  Sorry.

[EmpatheticJenny]

Hi, Dre--

I am the one who needs to say "sorry"!! I am very sorry that I gave what I can see in hindsight (that position from which perfect vision always is possible) was a misimpression.  The at-a-distance part of my closing referred to your comment "I wish you were here now."  I was thinking, "I wish I were, too," and I was assuming that we probably live many hundreds of miles apart.

What I meant to say was that even though I am at a distance, you should consider me a friend. If I were not so cognitively fuzzy, I might have seen the misimpression I was giving. It is not just a weak excuse when I blame my struggling thyroid for my cognitive fuzz. I have been totally floored by how this condition can mess up a person's mind.

Anyway, I am very sorry that I caused you to think you had ANY reason to apologize. You did not at all; to the contrary.

Your miscommunicating friend,
Jenny

[EmpatheticJenny]

I do not think that you misunderstood, dre, so I feel bad to see you apologizing. In hindsight, I could see how I left out a big, important part of my thoughts as I wrote to you, as if you had magical powers of telepathy and could fill in what I was leaving out. This is an unfortunate part of my communication style that I have struggled with for a long time, although I was doing much, much better in recent years. My thyroid difficulties have undone the progress I had made--not permanently, I energetically hope.

You are so right about how rude people can be, not to mention how weird or how lacking in any sense of respecting other people's boundaries or how...fill in the blank! There are so many forms of neurotic crud that it would be difficult to catalog them all. I don't know about you, but in addition to being annoyed by the way some people can be, and feeling the stress of having to cope wiht it, it disappoints me when someone who seemed simply super nice and friendly turns out to be a mess.

It is a reality of life, at least for those of us who project a sense of being open people, but it is a very difficult reality to learn how to cope with; I do not think that I have figured out the coping yet. I would not want to become closed-off in self-defense, but how to handle some of what you have to put up with when you have an open attitude toward the world...it is a tough one to figure out. In addition, it is SO difficult to be feeling crummy physically and then be forced to deal with something interpersonal that no one should have to deal with under any circumstance.

I am happy to hear the news about your mother!! I am going to say a prayer. You have been through SO much; I really hope that what might be good news turns out to be authentic good news.

You take care, too, okay? I am sending you love in return along with a big sympathetic hug.

Your friend for sure,
Jenny

[dre22]

i apologize too...and thank you Jenny.  I seem to be getting dissed a lot lately, almost wherever I seem to go.  It happened to me twice yesterday, at school.  I just don't know how to deal with it, and am realizing just how rude others can be, even when they seem to come across to some as super nice and friendly.  I truly apologize or my misunderstanding.  I do seem to be learning a lot of unnnecessary lessons lately.  God help me, and I wish you were here too, but I do need to learn how to handle it, and them on my own.  I am sorry for the misunderstanding, and your apology is completely accepted.  Thank you so much in return.  You have been a great help to me, in a very difficult time.  I talked with my mom also, and the doctor now thinks that the metastatic lesions on her spine and skull may be benign, which would make it much easier to get rid of them.  I pray they are benign, although she has been in a lot of pain, and thus very irritable lately.  Thank you very much for all of your support, and advice everyone.  Take care, with all my love....

[dre22]

Thank you so much Jenny.  But, I have been thinking, and realize that I might be wrong in my reactions to all of what I have thought of as bad recently.  I seem to be really overreacting lately, and it culminated today.  I do have a problem in that I don't seem to be able to handle it, as I once was or should.  I need to learn to let things go and roll off my back, which I cannot seem to do.  Thank you so much Jenny for your support, but I fear that I am the problem, truly.  I was in the past and seem to be so now as well.  Oh god help me, for I fear I am the problem, and it seems to be beyond the hypothyroidism.  I have spent a lot of time complaining, and accomplishing very little.  I am attempting to make arrangements to seek some help for it.  I fear I am the mess.  Thank you so much for all your support and friendship Jenny.  Take care, always...All my love to you and your family...

[EmpatheticJenny]

Your words have touched my heart, dre, and I have what I hope will be some helpful (and definitely supportive) comments to make. I am having a three-ring circus of a day at work, however, and tomorrow may be more of the same. If so, then you will hear from me this weekend. Take good care in the meantime.

Your truly understanding friend,
Jenny

[EmpatheticJenny]

Hi dre,

I admire you tremendously for having the strength to look honestly at your situation and at yourself and realize that you may be the source of many of your problems. I had the same sort of moment myself, many years ago. It can be the most difficult step imaginable to pull down your mind's own natural defenses and start talking to a counselor, but the eventual pay-off is enormous.

It is true that I still put up with a certain amount of crud from other people. All the same, before psychotherapy, I put up with far more, and it was a more difficult kind of crud. I used to allow people to walk all over me. These days, I have problems more with people who have no sense of boundaries or who say something that they ought to know would annoy me--saying it as if I am not even there.

The moral to the story, I think, is that when you are emotionally healthy, you tend to attract a certain amount of attention from people who are drawn to your stability and your openness, but who do not know how to relate to another person in a constructive way. It is a small price to pay for the emotional health.

So I hope that you are following through on your attempts to make arrangements to seek some help with the process of figuring yourself out. I cannot begin to explain how happy you will be with yourself someday for having decided to take this difficult step.

Please stay in touch and let me know how you are doing. For the moment, thank you for the "all my love" message. I send you the same in return. I also want to echo your "Take care" thought. I hope you are taking very good care of yourself during what I know is an immensely difficult time (letting emotional defenses down is difficult indeed). Know that I am thinking of you often.

Sincerely yours,
Jenny

[EmpatheticJenny]

Hi, dre--

Last Thursday, I wrote to say that I had some comments to send to you, but I probably would have to wait until the weekend. I did send the comments, though, last Sunday. I do not see the Sunday posting on my computer screen, even though it is shown in the list of comments added to this thread. Have you seen it (the post dated 1/28 from me)? If not, I remember what I said, so I can write it again.

Best wishes,
Jenny

[EmpatheticJenny]

P.S. After posting my comment of a few minutes ago and then clicking on my computer's "refresh" button, both today's comment AND January 28th's appeared. Before I wrote today's comment, clicking on "refresh" did not reveal the January 28th comment to me, so now I am mystified...but also glad that what I wrote on January 28th seems to be on display.