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My levothyroxine side effects
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by AppleJacs, Apr 19, 2007
I have been on my Levothyroxine for 3 weeks.
The first week, I felt a bit crazy, jittery when I tried to lay down to sleep and so on.
Now I am very tired, I wasn't even tired before I knew I had a thyroid issue and was put on the stuff. I just don't understand why I feel worse taking something rather than feel better than what I thought of as I was feeling just fine before.
And I have a strange lingering after taste in my mouth all day?
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by EmpatheticJenny, Apr 19, 2007
I do not understand, either, why I felt worse after I started taking levothyroxine than I did before I started taking it, but I did. Either there was something about beginning to support my thyroid gland's struggles by taking T4 that allowed some of the classic symptoms of hypothyroidism to blossom for the first time, or it was a coincidence of timing and I would have felt worse whether I was taking medication or not.

Whatever the case, I went through many weeks of ups, downs, and bumpy times before my well-being improved significantly and became somewhat stable. During that time, if I averaged the up days and the down days, there was no doubt that levothyroxine was helpful and what I needed. All of that is behind me now, but I remember it clearly enough to be able to assure you: Feeling worse again/better again/worse again is not necessarily a bad sign.

By the way, some of my worst "downs" were after each dosage increase. Each time, I went through a days-long adjustment period of elevated blood pressure, a fairly rapid heart rate, and a general feeling of being "over-revved." Your jittery/crazy experience, followed by fatigue, might mean that your system is like mine in needing to make an initial adjustment.

There are standard questions that any forum member who hopes to help you should ask, so let me ask them. Are you taking a brand name of levothyroxine, not a generic? It is true almost always that generic drugs are just as good as brand names, but levothyroxine is a notable exception. Common wisdom says that you should be taking one of the brands (Levoxyl, Levothroid, Unithroid, or Synthroid).

Second, are you seeing a physician who is well equipped to treat hypothyroidism? Occasionally a primary care physician knows enough about thyroid disorders to be able to treat one, but for many of us, an endocrinologist who sees a lot of patients with thyroid problems (rather than dealing mostly with diabetes) is the best choice.

Whatever sort of physician is treating your thyroid problem, I hope it is someone you can see or talk to soon if your being very tired continues. Usually, a physician wants to wait until you have had six weeks of medication before considering a dosage increase, but believe me, it does not always make sense to wait that long. Be sure that you keep on taking your levothyroxine as prescribed, of course, but you also might want to talk to the physician after you have had four weeks of the medication.

Good luck, and I hope you will write again if you have any questions and/or a report of how you are doing.
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by NYNY2020, Apr 19, 2007
Hi, I'm also newly diagnosed with hypo (hashi). I had very few, VERY mild hypo symptoms. My TSH is 10. My MD put me on Levothyroxine and I only last 5 days on it because it made me feel so horrible! Shortly aftering taking the Levothyroxine (25mcg) I would feel drugged/intoxicated, nauseous, bad headache, warming/burning skin (especially on my face), and diarrhea. MD thought I might be having a reaction to fillers in it and swiched me to Snythroid (the brand). This is my 5th day of Snythroid. I didn't have most of those side effects (adverse reactions) on the Synthroid. HOWEVER, I STILL feel drugged or slightly intoxicated on the Synthroid (25mcg) for about 2 hours after taking it. Also a little nauseous a couple of times. Other posters have told me that the body "needs time to adjust" to the med. I hope that's the case!!!!  It's a cruel joke when the med makes you feel worse than the ailment you're taking it for!  As I said, I'm new to hypo and the meds, so I'm still learning and discovering too. Our MDs should be informing us about what to expect and our options. My Endo MD hasn't been much help. Good luck! Please let us know how you do!!!
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by AppleJacs, Apr 19, 2007
Thank you for responding.
This is all very new to me. I know before a month ago I felt great. I was walking every night, jogging up and down my stairs 10 times for excersize.

The reasons I was tested for thyroid was because I dropped things a lot or it took several tries to grab something.
Thats when it showed hypo tsh at 10. something. and she has reffered me to an endocronoligist because my last lab my antibodies cames back abnormal.  Who I have not seen yet. This has only been 3 weeks since my last appointment that she explained my tsh.
I do trust my Dr. I have only had her a year but she seems to be quite thorough. I will know more down the line, but I figured it was strange to feel worse than before I started.

My bottle says IC Levothiroxine, I assume it is not the generic. Again I'm not very sure about how I would know if it were.
Thank you
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by NYNY2020, Apr 19, 2007
As far as I know, Levothyroxine is the generic. Synthroid is the brand. The pharmacy will most likely give you the generic unless your Md specifically states on the scrpit to dispense the brand. That's what happened to me. I'm too new to hypo to know if dropping things is a symptom. You might also see a Neurologist if you're concerned. But as I said, I'm also new to this.
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by EmpatheticJenny, Apr 20, 2007
I have some follow-up comments that I think (I hope) each of you will find encouraging, but my comments will have to wait until tomorrow, I am afraid. I am at the start of a crazy/busy day at work. Then I need to be here tomorrow, too, but being a Saturday, it will be a less crazy day. I promise to send you my thoughts sometimes tomorrow. For the moment: Thank you, both of you, for your input. We three have a LOT in common.
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by NYNY2020, Apr 22, 2007
Love to read your comments. Please post, still checking here.
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by EmpatheticJenny, Apr 22, 2007
Greetings! I apologize for not having posted my comments on Saturday, as promised. I have internet access only at work or at the house of some good friends. I did not come into my office at all yesterday despite having planned to put in a highly productive day.

The full story will follow! This afternoon, I am at my office and needing to work on a pressing project, but I am going to my friends' house this evening to be on duty while their baby sleeps. My being there enables them to go out for a glass of wine and a change of scene. Always, I can get something productive done on their computer, so I will post my comments then.

So keep checking, NYNY, and for the moment: Thank you very much for your encouraging comment!
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by EmpatheticJenny, Apr 22, 2007
I am back at last with a genuine reply. I feel a sort of kinship with both of you, because when I was diagnosed with "subclinical hypothyroidism," and when my then-new endocrinologist (who made the diagnosis) said, "This should be treated," the only symptoms I had were the complete opposite of what you would think hypothyroidism would produce.

My story will make the most sense if I give you a bit of background. Starting in my 40s, I had a variety of symptoms that eventually seemed to be perimenopausal symtoms. The worst was a set of sleep disturbances, the most vexing of which was a tendency to wake up after three or four hours of normal sleep and be WIDE awake. After starting to take an oral contraceptive as hormone replacement therapy, it took awhile before the sleep problem eased, but eventually, I was doing really well.

That was the situation when I finished graduate school in the summer of 2000 and had a real job, and real medical insurance, for the first time in a long time. I wanted to be sure that my weird symptoms were unusual symptoms of falling levels of estrogen, which did seem to be the cause. It was not a completely clear cause-and-effect picture. Taking an estrogen medication had eased the more bothersome symptoms (sleep disturbances). Some of the others--the ones that I loosely termed "neurological symptoms"--seemed to come and go according to their own timing. I could find symptoms like them in comprehensive lists of symptoms related to menopause, and they did not interfere with my quality of life, so I dealt with oddities by ignoring them.

The first physician I saw after settling into my new home and seeking medical care was an excellent gynecologist with a special interest in menopause. He was a little concerned about some of the symptoms I labeled as neurological, and he suggested strongly that a thorough assessment include tests that we hoped would rule out of e assessed for a demylinating disorder (such as multiple sclerosis).

When I read AppleJac's comments, I thought for what must be the umpteenth time since becoming part of this forum, "Well, what do you know?" Dropping things a lot has been one of my most common symptoms. I used to blame it on menopause, and it did seem as if supplemental estrogen "cured" the symptom, but it was one of the few "neurological" symptoms that supplemental estrogen cured.

Fast-forwarding a bit: I passed with flying colors a careful test of my central nervous system. Until about halfway through 2003, I was feeling well in every way. Then some of the familiar sleep disturbances began to creep back in. By the time I saw an endocrinologist in 2006, I had been through a frustrating time of very slowly, but definitely steadily worsening problems with sleep and no answers as to why.

In June of last year, a TSH of 4.11, especially compared with a pattern of slowly rising TSH levels over ten years' time, caused my then-new endocrinologist to diagnose "subclinical hypothyroidism." He said "This should be treated." Since I felt entirely well, and since my one big medical complaint was trouble sleeping, the last idea in the world that appealed to me was taking a medication that would "rev" me up. I went away to do some reading and some thinking.

Then by the end of July, I began to develop a symptom or two on the standard lists of hypothryoidism, and I also had a growing sense that something inside me was badly out of whack. I was afraid that I mgith have two conditions going on at once, but I began to agree with my endocrinologist that the hypothyroidism should be treated.

I agree, NYNY, that it is a cruel joke when a medication makes you feel worse than the ailment for which you are taking it! All three of us were smart to start taking the medication, though, because untreated hypothyroidism has major consequences for the cardiovascular system. The two parts of your experience that concern me are that you had such a strong reaction to the first form of levothyroxine you took and that your endo MD is not much help

I feel concern because I wonder if you might be like me in being hypersensitive to levothyroxine. Because I was a little scared about starting to take levothyroxine (I thought my sleep disturbances might worsen to the unbearable point), my endocrinologist suggested that I break the 25-mcg. tablets in half and take 12.5 mcg. (what he and I termed "the sissy dose) and take the half-dose for ten days to see what happened. He assured me that the dose was too small to have any positive effects, but at least we could be sure that I would not react badly.

If he had not been the sort of physician who respects me and who works with me as a true health-restoration partner, I do not know how I could have coped. He believed me when I reported that I actually DID feel better on the sissy dose, and he also has believed everything I told him about the times when I have felt worse, then  better, then worse....

I am glad that your endo thought to put you on a different brand of levothyroxine, but you, like me, might benefit on starting with half the smallest dose. It is an idea that would be worth suggesting to your endo, if only you had one who was more helpful. We who have thyroid-related fireworks really need an endo we work with well.

The need seems especially strong to me when we did not feel nearly as bad before we started medication as we did after. What an irony! It is not what I expected at all. The first three and a half months of adjusting to levothyroxine was like a slowly moving roller coaster. This pattern is not the typical one, I think, but it is not rare. When I finally felt well enough to have the courage to ask my endo if he had seen other roller-coaster adjustment periods (I had no emotional strength for hearing that I was a freak when I was going through the worst of the ups and downs), he smiled and said that he sees about two patients a year go through my pattern.

My ups and downs have included a very odd one-time-only episode of nausea (which is an extremely rare sensation for me; I have one of those stomachs that is as steady as the Rock of Gibraltar). Even my "ups" have included many episodes of dropping things, just like the bad old days. Generally, as the object drops, I realize that I had barely grasped it at all. It is as if my brain has no sense of how firmly I am grasping something until it is too late and the object is out of my grasp. I also have had poor eye/hand coordination and poor eye/foot coordination as two parts of a long, long list of symptoms with a neurological overtone.

AppleJacs, whoever thought to test your thyroid functioning when you were having grasping problems was a sharp physician. I assume that a neurological problem has been ruled out for you. If not, it could not hurt to ask your physician why she is not concerned. I am living proof that a person can have odd and somewhat scary symptoms while having a completely normal central nervous system, but I am only a layperson. No one should be reassured on the basis of my experience!

I am now looking back on a lot of symptoms that I and my primary care physician shrugged off at the time...an odd symptom here and another odd symptom there...and thinking that the picture as a whole shouts "hypothyroidism." It can be an amazingly sneakly affliction. As for why all three of us might feel worse, not better, once we started taking medication, even my excellent endocrinologist wishes he knew. He has been very honest in saying that there is a lot the field of endocrinology has not figured out.

What I want to be sure to say that might be encouraging to both of you is that all the people at the forum who say "Hang in there; it does get better" know what they are talking about. I have been impressed (and not in a good way!) by the wide range of symptoms that a troublesome thyroid gland can produce. I have had a strange lingering aftertaste in my mouth from the medication. I have had times when I had such a tiny appetite that I could scarcely believe it, and then there have been days when no amount of food seemed to be enough, and those two situations have alternated within a short period of time. I also noticed at one point that the way food tasted was being affected; former favorites in the produce category tasted a little odd and were unappealing.

Almost all the oddities began AFTER I started taking levothyroxine, and yet overall, it has seemed to me that I was deteriorating rapidly into unwellness anyway, and levothyroxine has been a good thing...but oh, the ups and downs have been something else again.

AppleJacs, I am glad that you have a physician you trust, and I am glad that she has referred you to an endocrinologist. If you do not feel positive about the endocrinologist, I hope your primary care physician is someone who realizes that not every pair of people are compatible, and sometimes it takes a couple of tries to find the endo who is right for you.

NYNY, is there any chance of your shopping for another endocrinologist? I think you are wise to be taking medication for your hypothyroidism, given a TSH level that is quite high, but there are few medical problems that make it more important to have a specialist who is helpful, and it sounds as if yours is not.  The endocrine system is complex, its effects are powerful, and when it goes a little bit out of whack...wow. As you both know, the cure can seem worse than the problem at first.

I hope that I have said something that will be helpful to each of you. Please do check in and let us know how you are doing over time.

With lots of empathy/sympathy,
Jenny
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by NYNY2020, Apr 22, 2007
Thanks so much for your post!! It DOES help a great deal to know that other people are in the same situation and having similar experiences w/ the med and thyroid symptoms. It's sort comforting actually, to know my body isn't uniquely strange. I've spent alot of time wondering if something else more omenous wasn't wrong with me. Now I KNOW that my body is very sensitive to the thyroid hormone! I didn't need the MD to confirm it. I can feel it every time I take the med! So, I'm going slow with the dosing! The Synthroid doesn't make me feel as horrible as the Levothyroxine (generic) did. Maybe the different fillers and dyes do play a role.  I'm on day 9 of 25mcg of Synthroid now and feeling a little less drugged or doped from the med than I did during the first few days. I'm supposed to up the dose to 50 mcg, EVENTUALLY. I plan to do that (weeks from now) by cutting the 25mcg pill in half, and increasing the dose in baby steps of 12.5mcg. You were smart to start at that dose! I'm already on 25mcg and willing to hang in there.  I take the Synthroid at NIGHT and it hasn't disturbed my sleep... so far. I absolutely can't take it in the morning and then go into work feeling drugged/doped and mildly nauseous from the med! Also, interesting to read about the hypo causing your neuro symptoms. I've had very mild tingling in my feet, very slight numbness in my hands (about once a week). Both my primary MD and Endo say it's from the hypo. So far, the med hasn't made a difference. I know hypo can/will develop into a serious condition IF I don't take the med so I'm toughing it out, and hoping I'll adjust quickly. I'm also considering finder a more informed, sympathetic Endo MD. Another irony is that my Endo MD told me he takes Synthroid and has NEVER had a single side effect from it! Lucky him!!! --Thank you again for sharing your experience. I hope you're feeling better soon! This board is a great help!