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Old 11-03-2009, 03:41 PM   #1
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Hashimotos, normal levels, but....

Hi everyone,

The short version: is it possible to have thyroid symptoms come and go? I've been diagnosed with hashimoto's (antibodies) but have normal levels of everything whenever I get tested, and cyclical symptoms.

The long version:

I got diagnosed with having the hashimoto's antibodies about 2.5 years ago, but all my thyroid levels were in the normal range. I had a lot of the symptoms of it, thus why my doc did the antibody test, but the endo that I saw just about laughed me out of the office when i went to see her after my primary care physician told me the antibody results.

That being said, in July I had a CRAZY heavy period for the first time in my life. I have never bled through a tampon no matter how long I leave it in, and this one lasted 1 hour while I was sleeping, and let's just say it wasn't pretty. I've been spotting between periods and getting them every 3 weeks or so for about a year now, but this was a totally new, out of the blue, symptom. (To quote Dr. House!). It happened again in August, and in Sept/Oct I was compulsively changing my tampon every 45 minutes so I don't know if it would have happened again (and using super plusses for the first time ever, so I don't know what that should look like). So, it might still be happening, I don't know though.

In the meantime, I've gained about ten pounds since august for no reason, and I'm exhausted, thirsty ALL the time, and freezing cold all the time. No amount of sleep, water, or covering helps me. I'm definitely bloated, and I started losing my hair about 3 weeks ago - which is exactly 3 months after the crazy period happened for the first time. I am waiting to get to see an endo, but in the meantime it finally occurred to me that all of this seems to be pointing to thyroid issues.

The problem is that I get these symptoms (other than the period) about once a year. I've lost over half my head of hair probably every 4 inches of hair or so based on the layers of it that I have, and it's been happening since about 2003. But when I get my levels tested, they all read as normal. It's like it's a cyclical thing with me - where I don't always have the issues (the hair loss stops eventually, for example) but they always come back. If I'm right, the period issues are done with - it seems to be back to normal, happening only a few days early, and with less spotting. The hair will likely stop falling out in a month or so. I'll probably lose the weight and stop being a zombie, start being able to concentrate, etc... This has happened SO many times before, it's really frustrating! Because hair loss is the primary thing that I notice, it's usually too late (since it falls out 2-3 months after whatever causes it to fall out occurs). I didn't think that the period had anything to do with it, so I didn't go to the doc.

What are the odds that a doc will hear this story and do something about it? Is it even possible to have thyroid issues off and on? Can you have normal thyroid levels and still have issues? I definitely have hashimoto's, I have the antibodies, so that is not in question. What is in question is whether I should be treated for it.

Anyone have any thoughts on this?

Last edited by knicknack; 11-03-2009 at 03:49 PM.

 
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Old 11-03-2009, 03:47 PM   #2
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Re: Hashimotos, normal levels, but....

(Oh, I should also mention that I can't seem to remember anything, and I just started a new job so this is REALLY problematic. I thought maybe it was just the stress, but who knows.) I don't remember what happens in meetings, for example, and I totally blanked out in a presentation the other day and I have NEVER had stage fright in my life. Never.)

Last edited by knicknack; 11-03-2009 at 03:47 PM.

 
Old 11-03-2009, 09:06 PM   #3
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Re: Hashimotos, normal levels, but....

The short answer is yes... You should be treated because you have both antibodies plus numerous thyroid-type of symptoms. That means your thyroid gland is unable to keep up with your body's needs and that your T hormone levels clearly aren't "normal" for you.

Start screaming (if you must) to be treated now. Insist on a starter dose of Synthroid or comparable product. There is no reason to wait any longer. A sensible MD will agree; if yours doesn't, move on and begin the search for one who will.

Last edited by midwest1; 11-03-2009 at 09:08 PM.

 
Old 11-04-2009, 07:12 AM   #4
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Re: Hashimotos, normal levels, but....

The last time I saw an endo I too was laughed out of the office-- or more precisely, asked, "What are you doing here wasting my time with these normal labs?"

That was over 15 years ago and I went on to get sicker and sicker with hypothyroidism and adrenal fatigue. I never considered my problems to be endocrine in nature because, after all, the specialist had told me otherwise.

Find another doctor who knows how to treat Hashi's. Endos are often not the best choice for many of us. You are suffering needlessly.

 
Old 11-04-2009, 08:39 AM   #5
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Re: Hashimotos, normal levels, but....

Thanks for the support - I've been reading some of the stories here and gosh it sounds like what I'm going through. I seem to have a milder case than some, but it just sounds SO familiar.

If an endo isn't the way to go, what would you recommend? My doc that ordered the antibody test was a DO not an MD, which is probably why she was so good at diagnosing. She wouldn't treat me for it though, since it wasn't her area of expertise. I no longer live in that city, and my doc here just told me to go to an endo as well. But, if there are other (better) options, I'd like to hear them.

Also, are we allowed to ask for doc recommendations on this board? I have looked online but I can't tell which of the thyroid docs recommended would actually go beyond lab tests, etc... Plus, I live in NYC, and lots of times it takes months to get in to see a doctor. So, a personal recommendation would serve me better, I think....

 
Old 11-04-2009, 08:54 AM   #6
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Re: Hashimotos, normal levels, but....

There's another thread going here looking for a doc recommendation in NY. I haven't read it but maybe it would be of help to you. You might have to leave the city to find a good one some of us have to travel great distances to get to the right doc. I hope you have luck finding one soon!

 
Old 11-04-2009, 03:57 PM   #7
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Re: Hashimotos, normal levels, but....

my doc might be able to help you. i'm in nyc and was recently diagnosed w/ hashi's. i was put on levothyroxine when my tsh was 3.49. it went down substantially but the doc said i should stay on it b/c my TGab is so high (in the 500s). i forget if you mentioned your antibodies but some docs will treat on that basis.

 
Old 11-06-2009, 10:28 AM   #8
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Re: Hashimotos, normal levels, but....

Erika, what is your doctor's name? I have an appointment with one of the docs recommended on one of those endo websites, who supposedly will prescribe things other than the 'usual' and will look past lab tests. It is probably going to cost me upwards of a grand though, I bet, since he doesn't take insurance at all and I have high out of network costs. So, I'm wavering on it, since I don't really have that kind of money to spend but I know it's worth it. If I spend that much only to find out that he won't look past the labs I will be very very upset though. *sigh*

 
Old 11-06-2009, 02:33 PM   #9
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Re: Hashimotos, normal levels, but....

mine is dr. barandes. he takes insurance. not sure if he's into the natural thyroid meds. but definitely worth a visit.

 
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