<p>Very Happy - not only is hair loss associated with hypo, but dh’s doc claims he can tell many hypo’s when they walk in his office because the outer portions of their eyebrows are missing. Another type of hair loss!</p>
<p>This was my pcp’s response to my query about my 5.07 TSH and talking to an endocronologist:</p>
<p>“The TSH of 5.07 is OK and shouldn’t be causing perceptible symptoms including cholesterol elevations and weight gain. Most endocrinologists say you don’t have to treat a TSH under 10, even if it is elevated. We can continue to monitor this annually for a few years however, and if it’s trending up we can do additional tests. I don’t think there’s anything we have to do about it now though.”</p>
<p>How would you proceed?</p>
<p>When the nurse called and told me that my daughter (whose numbers were similar and who had definite symptoms) didn’t need to be on medication, I said that I wanted her to be, that she had symptoms and would she please ask the doctor again. She called back; the doc wrote a prescription.</p>
<p>One endo I know will treat over 3 if there are symptoms.</p>
<p>If I were you I’d call and say you want a prescription for synthroid (50).</p>
<p>It has been my observation and experience that different people experience various TSH levels very differently indeed. A level that my father can tolerate had me experiencing severe symptoms, including overwhelming fatigue that had me sleeping way too long and waking unrefreshed. It was obvious to all that something needed to be done, and my TSH was way under the numbers discussed here. Once on thyroid medication, again it seems that different people need different ‘target’ TSH levels to feel their best. I’d recommend that anyone concerned about thyroid see an endocrinologist. A good one will check a lot more than just TSH.</p>
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<p>Well, I can’t type out what I’d really think because it’s not appropriate for online reading… you get the drift.</p>
<p>Seriously, my TSH has risen since getting off of the levoxyl and my new internist, who I do respect doesn’t seem to be too concerned. However, he did tell me to see the endocrinologist in mid-January, and I know that the endo will not be OK with my TSH since getting off the levoxyl. Over the last three months or so, as I’ve encountered many different specialists (allergist, gyne, breast surgeon, endo, PCP, integrative medicine doc, GI doc), almost all of them in one way or another said that basically my TSH is within the norms (except for when it was .425), but they feel it is more important to treat symptoms than numbers. But they also do believe that most people, emphasis on the ‘most’, feel their best when their TSH is between 1-2. At .81, my metabolism was so sped up that I wanted to commit myself to a psych hospital (I didn’t know that I was at .81, so you can imagine how I felt when it fell to .425). In a way, despite how bad I felt, I’m kind of glad I couldn’t get anyone to buy into that answer because it likely would have delayed the real treatment I needed. So a TSH of 1 is probably too low for me. But at 3.99 right now, I know it’s too high, so now that the holidays are officially over, I will be calling my endo’s office back and updating him on the new numbers. </p>
<p>One issue which slightly confuses me is, the endocrine surgeon I saw before seeing the endocrinologist (if you don’t remember, I also have a nodule growing on the remaining half of thyroid I have) said you have to wait three months to get a final picture on how TSH will react to any new change in medications, so to do blood work before then is not accurate. But I would have to think that doing blood work before three months can show trends, and in six weeks of having my levoxyl lowered, then stopped, I went from .425 to 3.99, so I suspect I’m higher than the 3.99 that was measured three weeks ago. Now if I’d only gone from .425 to 1.25-1.5 in that same time period, I would not be so quick to ask for another test so quickly, but I think it’s warranted in my case. And since I couldn’t get an appt. with him until 1/30, I’m calling his office this afternoon.</p>
<p>But to say most endocrinologists wouldn’t consider treating a TSH of under 10 is out dated and not true from the very many practitioners I’ve spoken to over the last three months. True, if someone is at 10 and has no symptoms (which is probably more uncommon), then there is no reason to treat. In fact, my old PCP gave to me as an example of how to treat someone to optimize how they feel that she has a patient who, God forbid, has a TSH of 5, and feels fine, so the doc prescribes dosages to keep her at 5.</p>
<p>Not confuse things any more, but taking thyroxine does suppress TSH.
The T4 and T4 related numbers show what you have in your system, your own and /or from your meds.
My endo believes that once at around 80 synthroid per day (varies by weight and personal/changing chemistry) , we are basically putting the thyroid gland to sleep and depending 100% on outside supplementation. So he stops using TSH at that point.</p>
<p>This is such an “art”. I think the best thing we can do is advocate for ourselves based on our individual symptoms, and find a doc who listens to that.
Good luck, all! I hope you each find a good balance very soon.</p>
<p>Performersmom, you are so right - medicine is indeed an art, and there is still so much we don’t know. A good doctor is priceless. I’ve been shocked at how varied the approach has been, depending on the doctor, on various issues I’ve faced over the years, not just in endocrinology but everything else. It seems the best bet is to get as knowledgeable as you possibly can, find a doctor you trust & who listens to you, and go with that.</p>
<p>performersmom - I completely agree… taking anything like levoxyl (synthroid, et al) does suppress your thyroid; it puts it to sleep and provides a stable dosing of the hormone to your body.</p>
<p>Before I saw my current internist who recommended the levoxyl vacation, the endocrinologist had given me instructions of taking the levoxyl (88mcg) 6/7 days a week, so that the average would work out to about 75mcg/day, over a week’s period. </p>
<p>I don’t fault the current internist, because really, in the over 15 years it had been since having half of my thyroid removed, no one had suggested a trial period of seeing how the remaining half would function on its own, so I was open to doing it and frankly, was hoping that it would kick in and stabilize at a more reasonable manner. However, now that I’ve given it some more thought (since my last post), I sort of wonder if, by stopping the levoxyl, which basically has been asleep for over 15 year, it takes a while for it to wake up. Maybe it will take a while for it to wake up, and then the TSH will come back down as the gland realizes the demand for its function is now present. Just a theory, but who knows?</p>
<p>^^I think once it starts bouncing around it takes a long time to settle down, for me it can take over a year. I thought my thyroid had been dead/asleep for a decade at least and then perimenopause and suddenly my TSH plunged…then it went sky high…then it plunged, well you get the picture… all on a constant dose of 150 Synthroid which I had taken for decades. They tell you that you “start feeling better” within 2 weeks, but once something wacks out all bets are off how long everything will take to settle down. The physician dropped me to 125 after the original plunge and I’ve been on that for about a year and I feel pretty good and seem to be settling down (cross your fingers). And yes, I lost the outer edges of my eyebrows back in my twenties with the original diagnosis.</p>
<p>LOL…outer edges of eyebrows gone here too. And YES, definitely, ‘things’ can throw your level out of whack, and then it can take a good long time to settle down again. After a few years of bouncing and struggling, I finally found a good, stable level that worked for me. It’s been great for nearly two years. Doc said at the last visit that I was good ‘until I moved or something’. Huh? How did he know that? We sold our home and moved just a few months ago, and I can already tell that, yes indeed, my levels are off. Sigh. Don’t need the test to know the signs. Time to make another appointment and get back on the merry-go-round.</p>
<p>I have this ridiculous fantasy that my outer eyebrows will suddenly start growing in again… SIGH! I even tried putting Latisse on the areas, bit no luck…
I am a collector of eyebrow pencils!!!
Tale care, all.</p>
<p>OK, more thoughts on what happens where we go off the thyroxine meds… YMMV, of course!
My endo explains it this way: for those with clinical symptoms (poor reflexes, depression, no energy, hair and out eyebrow loss, feeling cold all the time, high cholesterol…), he is pleased to be able to deliver a steady dose of hormone (via the meds once the amount of meds suppresses the pathway completely), as he believes an inflamed or noded thyroid gland delivers unsteady amounts of hormone. Some people’s glands even range from hypo to hyper. This is why he prefer to replace the action completely than supplement by putting the gland to sleep with a hefty dose of thyroxine.</p>
<p>He makes the analogy to BCP and the ovaries: when we go off BCP, the ovaries are supposed to resume estrogen production, and will if they are healthy. This is the same for the thyroid: the gland will resume producing hormone in the correct amounts but only if it is healthy.</p>
<p>He will use the blood panel numbers to see where YOU feel well and how you respond to various doses. He is happy to add T3 to the program for those who are depressed and energetically low even after their other symptoms subside and a hig does is reached and tolerated.</p>
<p>The thyroxine pathways can be disrupted by problems with the thyroid gland, but there are plenty of other chemicals/hormones/nutritional/environmental effects involved, and I believe that they are about to learn a lot more about the role of inflammation, sugar, insulin, good fats, emotional stress, toxins on these thyroxine pathways.</p>
<p>In fact, I am now watching Dr Oz. He had the controversial Dr Mercola on the show, and I just learned that Vit D supplements must be in the form of D3, and that UVB rays (not UVA), the optimal source of D3, sticks to the skin cells and then combines with cholesterol in the blood to support the thyroid. I am now fascinated! Mercola says the best source of sunlight is the sun itself outdoors, and the second best is TANNING BEDS, but only the ones that do not screen out the (burning) UVB rays… very controversial! Third choice is Vit D3, c, 8000 per day!!! Yikes… !</p>
<p>I am also unsure still about the role of iodine with the thyroid gland. Alternative docs are very very pro iodine supplementation. My endo is not a fan- he thinks iodine gives the gland a big boost for a while, but that effect fades out… The jury is still out for me.</p>
<p>point is - we still have so much to learn about the thyroid.</p>
<p>And second point is that we need to read and study and experiment ourselves, and not rely on just what a doctor says or prescribes. As I mentioned a few pages back, my endo is so pleased now -as am I - but she really gets virtually none of the credit, because 100% of the changes have been at my initiation.</p>
<p>Yes, missypie, we do need to take responsibility for our own health as much as we can. I am convinced to this day that the only reason my dearly-wanted second child is here is because I made it my project to become very proactive in learning about and then addressing the issues. Doctors can be fabulous, but they’ll never care as much about the results as <em>you</em> do. </p>
<p>And yes, performersmom, there so <em>so</em> much still to be learned about the thyroid. I’ve heard that the most common reason for low thyroid is Hashimoto’s, which is my case. Antibodies through the roof. Would dearly love to know why and what to do about the source of the problem, not just (partially) treating symptoms by taking thyroid hormone. Guess that will have to wait for another generation. I’d be interested to hear of anyone who went off supplementation and had their thyroid kick back into gear in a normal way. For me, as you said, the thyroid is not normal (damaged & dying due to being under attack by the immune system), and so going off hormone supplementation is not an option.</p>
<p>I wish I could get the simple word out to other women just how common thyroid issues are…to be exhausted and know something is wrong and not know why is frightening. I suspect a lot of women just assume ‘they are getting older’ and figure it is part of aging.</p>
<p>I laughed with your Latisse story. I admit I’ve thought of trying that myself! Guess I just assumed the eyebrows would return to normal once the thyroid levels did. No dice.</p>
<p>Interesting that you mentioned Vit D. Both DH (who has no thyroid issues) and I were very low when tested. This too is very common and often not caught. For years now, I’ve supplemented with a lot of D3, and even with <em>quite</em> a lot of it, I’ve managed to stay only in the middle of the range. I had no idea that Vit D was related to the thyroid before reading your post. Fascinating.</p>
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<p>Lots of folks think it’s gluten. I have been gluten “less” for 9 or 10 months. I can’t say I’m gluten free because yes, I did eat a waffle in Belgium and I did eat a warm chocolate chip cookie when D made them. I don’t really worry about cross contamination the way someone with celliac’s would have to. But I do feel better.</p>
<p>There’s this whole thing with gluten and autoimmune conditions and autism…I don’t know if it’s utter quackery or if there’s truly a link, but it all fits with me and my family…I try this, try that…I feel a lot better with what I’m doing…not trying to convert anyone else.</p>
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<p>If you look at a list of the symptoms of thyroid issues, menopause and clinical depression, there is so much overlap.</p>
<p>I don’t remember if I’ve posted this on this thread or another one, so forgive me if I’m repeating myself, but if the source of your thyroid issue is autoimmune, have your kids (esp your daughters) tested. I’ve heard that the issues are triggered at puberty, pregnancy or menopause. I had my kids tested over the summer. The older two are well on their way to being hypothyroid and the youngest (15 at the time) is already there…all of their antibodies are sky high. It would be so easy NOT to detect hypothyroidism in a teen girl or young adult…depression, no energy, weight gain…easy to dismiss those as typical teen issues.</p>
<p>I read your experience on gluten with interest, missypie. I did try gluten-free for a short time awhile back, but it wasn’t really a fair trial. I tried to eliminate milk and other things at the same time, and the whole thing became too restrictive. It would probably be worth trying just the gluten-free part again, for a longer period of time, to give it a fair chance. I’m curious, in what ways do you feel better? Better mood? More energy? Just feeling more healthy? Have you had your antibodies tested again to see if there was any response?</p>
<p>I’ll throw something else out there in case anyone has experience with it - anyone with thyroid issues have, say, knee pain? This is has become a worsening issue for me, and of course is somewhat tied to the tendency toward weight gain & being hypothyroid. In my case, just 10-20 pounds over my optimal weight makes the knee pain a real issue. I don’t have arthritis, that I know of, but the immune/inflammation response with thyroid makes me wonder if that has something to do with the knees.</p>
<p>Yes, I insisted DS be tested for thyroid now that he’s a teen, and, over the doctor’s objections, insisted on an antibody test as well. So far, his TSH is normal, but…the antibodies are not. Doc says it is just a matter of time before his TSH spirals upwards. I feel so helpless being told there is nothing to be done, yet know that this is coming. No way he’d try gluten free…I can’t even get the kid to take vitamins. Asked the doc if a tiny bit of synthroid could help ward off a full-blown case of hypo, and was told no. </p>
<p>I am glad you got your kids tested, missypie. I understand that treatment of adolescents is tricky and requires a lot of adjustment and monitoring. Mine are both very afraid of needles, so this sort of thing is the stuff of nightmares for them.</p>
<p><<i’ve heard="" that="" the="" issues="" are="" triggered="" at="" puberty,="" pregnancy="" or="" menopause.="">></i’ve></p>
<p>In my case, I am quite sure that the second pregnancy triggered it, or at least accelerated it. </p>
<p><<if you="" look="" at="" a="" list="" of="" the="" symptoms="" thyroid="" issues,="" menopause="" and="" clinical="" depression,="" there="" is="" so="" much="" overlap.="">></if></p>
<p>So true!</p>
<p>I did have my antibodies tested about 3 months into being gluten free. They had to call the insurance company to get them to pay for it because they said that once your antibodies are high, you never need to test again because they never go down. Mine stayed “>1000”.</p>
<p>If you don’t remember my story, last February I weighed 97 lbs, my blood pressure was almost at stroke level, I felt like I was going to jump out of my skin all the time and was ready to ask for anti-anxiety drugs. I was taking 100 mcg of synthroid, plus cytomel in some amount. Since then, I’ve cut out most gluten, don’t take cytomel and am down to 75 mcg. No unreasonable anxiety, I’ve gained 10 lbs, my numbers are great, my BP is low normal and my nodules are almost gone. I might have had the same results with gluten, but I feel better without it. I don’t get sick when I have gluten, but I have a very heavy feeling and can pretty much feel it moving through my system.</p>
<p>If you want to try it being gluten free again, you might just want to wait until spring/summer, when you can feast on gorgeous fruits and vegetables. The “gluten free aisle” at the grocery store is pretty unnecessary - I just buy the pasta, and have a bit of rice flour around for thickening things. If you just shop the perimeter of the grocery store like all the health conscious people say to do anyway, you’re pretty much gluten free.</p>
<p>I just wanted to add that I have never been a healty eater, but being gluten free sort of forces one to eat more healthy foods. It’s lunchtime and the choices are burger, Subway or salad bar and the salad bar is chosen by default. Someone brings a cake to work and it’s somehow easier to pass up. (If you say you are trying to lose weight, people will still try to talk you into a slice; if you say you are gluten free, that’s the end of that.) And then if you want to cheat you know you’d look pretty silly if you declined cake this week because you were gluten free, but next week you ate some.</p>
<p>Wow, missypie. I somehow missed your story before. Last February, were you by chance hyperthyroid for awhile? I’ve been both hypo and hyper (hyper due to being prescribed too much thyroid hormone). The symptoms you describe sound like when I was hyperthyroid - it was very, very uncomfortable! </p>
<p>If you weren’t hyperthyroid and the changes are all due to being gluten-free, that is wonderful indeed. I think after applications are in for DS and I find out where my thyroid levels are, I’ll try skipping the gluten and see what happens. I sure could use a reason to eat more healthfully, anyway. </p>
<p>I guess one reason why I haven’t gone back to gluten-free was I thought it was all or nothing…that you have to give up even the tiniest sources of gluten, like various condiments, and, since you can’t be sure what is in restaurant food, eating out is difficult. It is hard to be “perfect”, and I was under the impression that even the smallest exposure to gluten would have your insides all in a tizzy again. Maybe cutting down gluten, say, 90% would be enough to make a difference.</p>