Thyroid Medication Options

Parent Cafe
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<p>Hugcheck - </p>

<p>No problem; I just assume that everyone knows that Synthroid use has become very controversial amongst physicians due to this manufacturing issue.</p>

<p>That being said, the author of the article, Mary Shomon, is a thyroid patient advocate. I almost never use all caps, but let me add, she IS NOT A HEALTH CARE PROFESSIONAL. But she has written quite a few books that educate readers about the thyroid and how to talk to one’s health care professional about them. Last fall, when I was sick due to being hyperthyroid, I actually had a 30-minute phone consultation with her; it was very helpful. You can also find her Facebook site if you’re on Facebook, and learn a lot there.</p>

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<p>Mary Shomon has been a font of wisdom for us. She is the first author I direct ppl to when we hear they are encountering thyroid issues. I’ll look her up on FB thanks!</p>

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<p>intparent, 6.9 is not terribly high. Mine was over 200 when I was diagnosed. That doesn’t mean you don’t need some help from physician but maybe figure out the back thing and find a different physician before you start on Synthroid or a generic again. This is just my opinion. Make sure the new physician tests for antibodies and have your T3 and T4 checked. Even on synthroid I go through periods where my tsh is over 8 but my T3 and T4 are in line and typically it lowers on it’s own. Normally I can feel when it is climbing but conversely I can feel when it settles back down. I guess over the decades I’ve bounced between .3 (two weeks ago) to in the teens over the course of a year. If you had the antibody test do you have Hashi’s?</p>

<p>That’s interesting about Synthroid…I’d been on Synthroid for two decades and my insurance company switched me this year. I worried but I feel really good and I haven’t felt this “on” in a long time.</p>

<p>Enon I just ask my physician every three or four years to run a T3 and T4 and he does so quite willingly. He probably wouldn’t run them unless something significant changed with me so I just ask because I’m curious. I’m not taking Cytomel so perhaps that is why he is willing to run the tests. It’s a true fact that physician’s would rather treat with Synthroid (or generic) if possible. Cytomel is tricky to figure out dosage and it’s rapid release. Some people do well on it, but I’ve not considered it because I’m well managed with synthroid/generic.</p>

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My mother and her family are all hyper, my dad’s entire family is hypo. Among their five kids, three are hyper and two were hypo. My oldest sister had multiple miscarriages because of her hyperthyroidism, and I am convinced that hypo contributed to other sister’s depression that led to her suicide. I was fortunate that they were so much older than I because I was diagnosed at age 9 and never had those problems.</p>

<p>I’ve always taken synthroid, except for a short period on generic which was an unmitigated disaster. It may be because I get my bloodwork done every 90 days that I don’t have problems, but I am going to raise that issue with my doc.</p>

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<p>Oh I definitely think genetics play. My father is hypo, his sister is hypo, I’m hypo and one of the boys is on his way. Depression is my number one symptom that my tsh is rising. I’m so aware of it now and can feel the edges creeping in. Zooser, I’ve been on the generic for a year now and it did take a while to settle down, but now that I’ve settled down I’m OK. My tsh plummeted after I switched to the generic…heart palpitations and everything. We adjusted the dose down to 150 and everything settled down but it was a roller coaster. I’m still lower but feel great and I told my doc I’d call him if I get shaky before my next 90 day appointment.</p>

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<p>The other thing to remember for us women is, as we enter perimenopause/menopause and we don’t have as much estrogen, our body often needs less of the synthetic thyroid hormone (whichever one it is you’re taking), so again, it’s easy to slowly slide into a hyper state without connecting the two. </p>

<p>Zmom - Up until this past fall, I only had mine tested once a year. Never, ever, will I go that route again! It’s now likely every three months for me, too, and more often if needed due to symptoms changing. Also regarding the depression and suicide. In the reading I’ve done (books, as well as other forums), people who are hyper can be absolutely miserable (often thinking it’s all in their heads) and have hallucinations as well. So suicidal risks are not only indicated in hypo, but hyper as well.</p>

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<p>Again, I am not a medical professional, and while 6.9 is not terribly high, it can be enough to make someone’s life unbearable. It’s a very individual thing where differences as little as 1 point can make a HUGE difference in someone’s life. For me, .81 put me in a hyper state. For another woman I know, she felt great at .5. </p>

<p>One of my physicians told me she had a patient who felt best around 5. For me somewhere between 1.25 and 1.5 is probably ideal. Do you see how a point up or down from that could make a HUGE difference? So to say that 6.9 is not terribly high is misleading. People should not go by numbers alone. </p>

<p>I’m sure I’ve mentioned it somewhere here, but the American Academy of Clinical Endocrinologists has narrowed their optimal reference range in 2002 to .3-3.0. Not too many physicians follow that guideline. My allergist (in his early 80s) remembers when that reference range was as high as 50! I have found a few physicians who really believe people are at their optimum when their TSH is between .5-2. I was one of the odd ones who felt miserable at .81, much less .425 when it was at its lowest.</p>

<p>What this all means is that there is likely an epidemic of people walking around out there with undiagnosed thyroid issues.</p>

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<p>^^ Yes I’m well past meno now, but my dosage peaked in my late forties and every several years was lowered into my early fifties. For me I definitely think it was simply the differences in the manufacture of Synthroid vs. the generic. Physician’s do recommend that you not switch manufacturers.</p>

<p>There were periods in my life when I was stable for several years in a row and my physician’s only made me get bloodwork twice a year, but the minute something changed significantly I was back on the every 90 day routine. I’m back in that every 90 day routine now because of the brand change, the plummet etc…it’s a pain but it’s important.</p>

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<p>“In the reading I’ve done (books, as well as other forums), people who are hyper can be absolutely miserable (often thinking it’s all in their heads) and have hallucinations as well.”</p>

<p>My cousin is schizophrenic (50ish years now - age 67). Dx’d hypo about 10 years ago. Another cousin’s daughter (age 30) living in a group home due to some sort of rage mental illness. Dx’d hypo oh around 5 years ago. If you google and Wikipedia endocrine links to schizophrenia/hallucinations you get some very interesting info. I know Mom in law was terribly emotionally abusive as she got sick; she said horrible things to my DH about us (his wife and kids) just terrible things that had no real basis in reality. She was somewhat like this for many years, but it spiked drastically before her dx.</p>

<p>I think my hubs ran hot (hyper) before he went hypo. I think it’s common for ppl to seesaw between hyper and hypo before the thyroid poops out. And the thalamic chain or some such - hypothalamus, thalamus, pituitary, thyroid, adrenals, ovaries, even the pancreas and no doubt more, are all biochemically linked in response and feedback chains. I think the state of knowledge of some of these other endocrine systems is sort of where thyroid was 50 years ago or so. Lots to learn.</p>

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<p>Sure Terri, and she should talk to her physician…she’s the one who mentioned the back thing and the treatment for hypo might be related. If her physician says it’s fine she can figure out the back thing first. I’m not dismissing the 6 and how she feels…remember I’ve been living with this for almost 35 years now…I know how it feels. I feel great at .4-1 and not so great at anything above 20…my hair starts falling out at 8-14…everyone is different. a couple points does make a difference, but the hardest thing about the aches, pains, hair loss and weight issues is figuring out which ones are truly related to dosage or lack of treatment and which ones are something else especially in the middle years.</p>

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<p>The thing is, I didn’t feel bad when I went to see the endo. I had some vitamin deficiency issues last year (D & iron, felt miserable until those were corrected), and while testing for those my primary care physician also ran a TSH. She commented it was above the normal range (5.0 being the top of the normal range in her mind), and she would keep testing. She did a T4 then (but no one has ever done a T3 or antibody test). T4 was low-normal range. Each time she checked my vitamin levels, etc. over the next year she checked the TSH, and it was gradually climbing up into the 6s. She told me at an appointment a few months ago that I should consider starting a synthetic thyroid medication, and gave me the endo referral.</p>

<p>The only symptom I have noticed is a STUBBORN 15 lbs. that arrived about a year and a half ago and WILL NOT LEAVE in spite of tremendously diligent diet and exercise efforts. :frowning: (Plus the extra 6 lbs that came with my Synthroid incident/need to cut back exercise due to back/hip pain). Also… my eyebrows are sparse, but they have always been pretty light colored anyway. And my cholesterol has climbed somewhat, but I figure if I could get rid of that 15 lbs. it might go back down without any medical intervention (primary care physician agrees).</p>

<p>So I am reluctant to go back on this drug that (1) once I am really on it, I hear I can never stop, and (2) it makes me feel awful, and (3) I don’t really have any symptoms (other than that darned 15 lbs) that I feel like I need it for.</p>

<p>Here is a question from reading this thread. A couple of people have commented on rough skin as a symptom that they need a dosage adjustment. I noticed during the couple of weeks I was on Synthroid that my knees and heels became unbelievably rough (snagged my favorite 2 pairs of stockings on my heels…). I have NEVER had rough skin on my heels before. Do those who experienced rough skin patches remember if you were getting too much or too little of your synthetic thyroid medication?</p>

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<p>Hypothyroid will make you gain a few pounds although typically the higher amounts are age related. It is, I believe, and physician’s disagree, HARDER to get weight off when you are hypothyroid…that is the big bummer. I’ve gained and lost the same 10 pounds since I turned 50 – eveytime I slack on regular exercise the pounds come on overnight I swear. I’ve always had dry skin even when I was a teen but I don’t know if that is related to the hypothyroid that was diagnosed in college or not. I thought I had mono in college little did I know…</p>

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<p>OP here….what a long strange journey this has been since I started this thread 10 months ago. I’m back needing more advice.</p>

<p>History of hyperthyroidism in my 20s, hypothyroidism starting in my mid 30s. Have been on T4 (100 mcg Levoxyl) ever since. Last year, in addition to fatigue and other symptoms, my hair started falling out - I have probably lost about a 1/3 of my hair at this point. Every time I brought up my symptoms and asked if it could be thyroid, my PCP ignored me. The last test he did (in August) showed a TSH of 2.1 (range .4- 4.0) and a Free T4 at 1.4 (slightly High - range is .6 - 1.1).</p>

<p>Out of desperation, thinking it was a peri-menopausal issue, I went to a GYN. She said “nope, not hormonal but your TSH is on the high side for someone with hypothyroidism.” She started me on 112 mcg of Levoxyl. Six weeks later my TSH hadn’t budged (at 2.0 now). So she ups my dose to 125 mcg. Within 2 weeks I started having panic attacks. Initially, I didn’t make the connection between the thyroid medication and the anxiety issue because 2 weeks prior to starting the 125mcg I had a hysterectomy with ovary removal (not elective) and thought it might be related to the surgery and/or trying to get my estrogen replacement levels right. My GYN thought it might be a post-surgical reaction.</p>

<p>So for six weeks, I vacillated between feeling really, really good (high energy, no more cravings for sugar, appetite on the low side, great mood, hair loss stopped, better than I’ve felt in years) except for the occasional panic attacks. When my TSH was tested again at six weeks it had now dropped to .4 . The GYN writes me a note that this is great but by this point (8 weeks on 125mcg) I had started to feel like it’s not so great as I now had racing thoughts and no appetite in addition to the anxiety. I was not surprised that my TSH has fallen almost below the normal range. This is exactly how I felt when I was diagnosed with hyperthyroidism in my 20s. Fortunately, I know what hyperthyroidism feels like and this was definitely going in that direction. I need to give a special shout-out to Teriwtt for sharing her story because I could see that I was heading down the same path she did when she had her thyroid crisis.</p>

<p>So, I decided to drop back to the 112 mcg last week and all those symptoms went away plus I am now hungry all the time and feeling fatigued! Argh!!! I really think I need to be on a dose between the 112mcg and 125 mcg. I’ve been reading research articles and case studies and it is actually quite common to alternate doses every other day or even just adding one additional dose per week. Levoxyl has a 7 day half-life so it’s really about the weekly dose.</p>

<p>I’m not going to be silly enough to do this without being monitored by a physician but here’s my dilemma….</p>

<p>I have an appointment with my PCP next week. I can’t decide what, if anything, to tell him about the thyroid medication issue. He’s been less than supportive about adjusting my medications. When I told him about my hair loss his only response was ‘I hate that for you.’ Though I’ve been going to him for a long time and really trusted him, there have been several other instances in the last few years that have really bothered me and I am seriously considering finding a new physician and have started asking around for recommendations. In the meantime, I don’t like being without a PCP. My dilemma is do I tell him about the thyroid stuff or just not say anything? I have prescriptions from my GYN and she seems willing to work with me on this. Although the ultimate thing to do would be to see an endocrinologist, I’m willing to wait a little longer to see if I can get the dosage right with the Levoxyl and if that fails, I will ask my GYN for an endocrinology referral (they don’t accept self-referrals in my town). What would you do? I don’t like withholding information from my doctors but I really don’t want to go round and round with him about this as he didn’t think my thyroid medications needed adjusting in the first place. I may just tell him my GYN upped my Levoxyl to 112 mcg and leave it at that.</p>

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<p>You should tell him about the thyroid and ask him for a referral to an endo. You may or may not like the doc he refers you to, but you really need to see an endo for all this. Get another referral from your gyn, and then you can decide which one you want to see. How convenient if they both recommend the same one.</p>

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<p>That’s a good idea. It can’t hurt to ask, though he might be reluctant to give me a referral since he doesn’t think my thyroid is a problem. On the other hand, if he refuses then that’s just more one reason I need to find a new PCP.</p>

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<p>I wouldn’t even word it as asking for a referral for an endo. I might word it as asking for a second opinion from an endo. A second opinion sounds much less threatening than a referral, at least to me.</p>

<p>Am glad my story helped you out. Funny as it may seem, I’m actually reading and typing this from a hospital room. Although all bets are out the window, I either had a really bad reaction to one dose of Bactrim, or got a really bad case of gastroenteritis. Came in through the ER yesterday and should be going home this afternoon. Am on my fourth liter of fluids. Anyway, when they drew blood yesterday, and after I’d given them my health history, the ER doc said, “Well, I didn’t add a thyroid panel on your blood work.” I told her I think I’d had it checked enough in the last five months and would be OK without that one this time around!</p>

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<p>teriwtt, I hope you are out of the hospital today.</p>

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<p>teriwtt - sorry you’re in the hospital. That’s never any fun. Hope you get released soon. Glad it’s not your thyroid this time.</p>

<p>Thanks for the suggestion on wording it as a second opinion. That might work better. I’m open to any suggestions. The more suggestions I have in my back pocket the easier it will be for me to decide how to approach it when I’m in his office.</p>

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<p>MomLive, be aware that the hormones will change again about 90 days post-op when you deplete your stores of estrogen.</p>

<p>It sounds like your thyroid production is fluctuating, your idea of alternating the two doses seems smart. The blood testing is one thing, but your sense of your symptoms is more important, I have had docs tell me they go more by how the patient feels than the exact numbers as one person’s high value is another’s low. Being sensitive to the way you feel is going to help you present the best information to the physician.</p>

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<p>MomLive, you’re not adding T3 yet? If not, please talk to an endo about a second med for T3. This might allow you to take less T4 (less panic) but keep the feelin good part. It did for my hubby! Made all the difference in the world.</p>