What's up w/ my Mom's thyroid? Should she find a more concerned doctor?
August 6, 2011 10:40 AM Subscribe
Thyroid question: For almost 20 years my Mom has been hypothyroid, basically no thyroid function. Over the last year her TSH test has turned 180° to that of someone w/ normal thyroid function. Her D.O. acts unconcerned, has only barely lowered her Synthroid dose, & is only now finally ordering T3 and T4 tests with her next TSH at her insistence 3 months from now. She shows pronounced signs of either hypo- or hyperthyroidism, including fatigue, some hair thinning, & a return to symptoms she had 20 yrs ago before treatment, such as ophthalmic migraines. She wants a new PCP. Should a new PCP show more attention to her situation? What's happening to her?
Details:
•Her TSH level has gone from 3+ (where it was for almost 20 years) to, on the last 2 tests, approx. 0.5. (Depending on the physician and school of thought, a person is not considered hypothyroid until TSH reaches anywhere from 2.0 to 3.0.)
•Her doctor has only lowered her Synthroid from 88 to 75, although her previous doctor lowered it from 100 to 88 maybe 1 yr ago.
•I am concerned that, if her TSH tests are correct & if they indicate a return to normal thyroid function, she may be hyperthyroid because of her Synthroid dosage.
•Her D.O. gives very little attention to his pt's concerns in general. He is busy being the head of his dept.
•How can my Mom find a good physician? Can she request consultations & therefore "interview" for a new PCP?
•Her ophthalmic migraines include the usual blurring of vision, in her case by bright, jagged, lightning-like lines. She has not experienced ophthalmic migraines since just before she was treated for hypothyroidism, when she also had Bell's Palsy which also disappeared when she began taking synthroid.
•I am aware that a return to normal thyroid function is extremely unlikely, however she has radically changed her diet & exercise habits for the better over the last several years. Her exercise level has, though, waned to almost nothing since the onset of her fatigue w/ the change in her TSH level test results. She was diagnosed with Hashimoto's, which is considered autoimmune, & her changes in diet coincide with research I have read about diet lessening the effects of autoimmune diseases.
Details:
•Her TSH level has gone from 3+ (where it was for almost 20 years) to, on the last 2 tests, approx. 0.5. (Depending on the physician and school of thought, a person is not considered hypothyroid until TSH reaches anywhere from 2.0 to 3.0.)
•Her doctor has only lowered her Synthroid from 88 to 75, although her previous doctor lowered it from 100 to 88 maybe 1 yr ago.
•I am concerned that, if her TSH tests are correct & if they indicate a return to normal thyroid function, she may be hyperthyroid because of her Synthroid dosage.
•Her D.O. gives very little attention to his pt's concerns in general. He is busy being the head of his dept.
•How can my Mom find a good physician? Can she request consultations & therefore "interview" for a new PCP?
•Her ophthalmic migraines include the usual blurring of vision, in her case by bright, jagged, lightning-like lines. She has not experienced ophthalmic migraines since just before she was treated for hypothyroidism, when she also had Bell's Palsy which also disappeared when she began taking synthroid.
•I am aware that a return to normal thyroid function is extremely unlikely, however she has radically changed her diet & exercise habits for the better over the last several years. Her exercise level has, though, waned to almost nothing since the onset of her fatigue w/ the change in her TSH level test results. She was diagnosed with Hashimoto's, which is considered autoimmune, & her changes in diet coincide with research I have read about diet lessening the effects of autoimmune diseases.
I would think she wants a good endocrinologist, not a PCP - thyroid disease is a specialty, which calls for a specialist.
posted by Iris Gambol at 10:47 AM on August 6, 2011
posted by Iris Gambol at 10:47 AM on August 6, 2011
Nth the endocrinologist. Depending on where she's located, it can take time to get into a good endocrinologist, but it's worth it.
posted by katemonster at 11:22 AM on August 6, 2011
posted by katemonster at 11:22 AM on August 6, 2011
Best answer: Thirding an endocrinologist, and specifically one who deals with thyroids; some endos specialize mainly in diabetes management and, in my experience, don't always know significantly more about thyroid issues than an internist.
posted by scody at 11:23 AM on August 6, 2011 [1 favorite]
posted by scody at 11:23 AM on August 6, 2011 [1 favorite]
By D.O., you mean an osteopathic physician? I strongly agree with seeing an endocrinologist with thyroid expertise. She needs someone who will do a full workup and who can rule out thyroid cancer and other problems. Thyroid problems run in my family so I have a lot of sympathy for trying to get them sorted out and a good endocrinologist is worth their weight in gold.
posted by gingerbeer at 11:49 AM on August 6, 2011
posted by gingerbeer at 11:49 AM on August 6, 2011
Best answer: Nth the endocrinologist. Like you say, primary thyroid function rarely recovers to the extent described. So it's possible that your mom's hypothryoidism may have been originally secondary to some other issue. Other pituitary hormones (cortisol, growth hormone, reproductive, etc.) can suppress the body's ability to use thyroid hormones--and these hormones can change due to simple things like age and more complex things like pituitary ademonas. Anyway, yeah, she needs a comprehensive endocrine work-up this time around.
posted by Kalatraz at 11:58 AM on August 6, 2011
posted by Kalatraz at 11:58 AM on August 6, 2011
Forgot to add, thyroid patient advocate Mary Shomon maintains a directory of "top thyroid docs" should you need a good place to start finding a new doctor. http://www.thyroid-info.com/topdrs/index.htm.
posted by Kalatraz at 12:01 PM on August 6, 2011 [1 favorite]
posted by Kalatraz at 12:01 PM on August 6, 2011 [1 favorite]
Best answer: I have Hashimoto's too, and there's no substitution for a good endocrinologist. It can take several weeks (or even a couple of months) to get in for an initial consult. If her existing PCP won't do a referral, then find a new PCP immediately who will.
Changes to thyroid levels usually take time - a month is what I've been told. My first endo tested me once a month when we were fine-tuning my dosage.
Sometimes those of us with Hashimoto's have this burst of thyroid activity before it goes back to low functioning. When I was first diagnosed I was actually hyperthyroid. A month later I was hypothyroid. It's the sudden change in thyroid level that causes side effects like hair loss.
Your mom won't feel good until things level out again, but she's not likely to be in an emergency health situation. I hope she gets into a good doc right away. My first endocrinologist was really great, he was a professor at a big 10 university and liked to teach, so he explained a lot of stuff for me. Fingers crossed she gets someone like that!
posted by hms71 at 4:05 PM on August 6, 2011
Changes to thyroid levels usually take time - a month is what I've been told. My first endo tested me once a month when we were fine-tuning my dosage.
Sometimes those of us with Hashimoto's have this burst of thyroid activity before it goes back to low functioning. When I was first diagnosed I was actually hyperthyroid. A month later I was hypothyroid. It's the sudden change in thyroid level that causes side effects like hair loss.
Your mom won't feel good until things level out again, but she's not likely to be in an emergency health situation. I hope she gets into a good doc right away. My first endocrinologist was really great, he was a professor at a big 10 university and liked to teach, so he explained a lot of stuff for me. Fingers crossed she gets someone like that!
posted by hms71 at 4:05 PM on August 6, 2011
Best answer: Has she been taking vitamin D supplements? Anecdotal, but I have recently read a couple reports of people who needed to significantly reduce their levoxyl/synthroid after beginning vitamin D supplementation. I wondered because you said that she has radically changed her diet. Anyway, yes, the type of doctor she needs is an endocrinologist.
posted by HotToddy at 9:05 PM on August 6, 2011
posted by HotToddy at 9:05 PM on August 6, 2011
As someone who has had hypothyroidism for 20 years and is on a pill for life, for heaven's sake, go see an endocrinologist, who is a specialist in this kind of thing. AskMe really cannot diagnose the condition for you reliably.
posted by madman at 9:56 AM on August 7, 2011
posted by madman at 9:56 AM on August 7, 2011
Ditto endocrinologist. You don't say where she is located but memail me if it's San Francisco.
posted by radioamy at 10:30 AM on August 7, 2011
posted by radioamy at 10:30 AM on August 7, 2011
Response by poster: THANK YOU ALL. Everyone gets honorable Best Answers, but I'd better stop marking all my q's answers as Best before someone drags me to MeTa for it. (At least a posse woulda done that back in the days of the Old Wild West here.)
HotToddy, thanks -- that's not specifically what I was thinking of regarding dietary changes (mostly just eating better, WAY more veggies, and especially no dairy [refer to the book 'the China Study' w/ any dairy questions]), but she definitely did start on large Vita D doses maybe a couple years ago, and I could see that potentially taking a while to effect thyroid function. Vitamin D is all the fashionable rage amongst doctors lately.
posted by Shane at 4:49 PM on August 7, 2011
HotToddy, thanks -- that's not specifically what I was thinking of regarding dietary changes (mostly just eating better, WAY more veggies, and especially no dairy [refer to the book 'the China Study' w/ any dairy questions]), but she definitely did start on large Vita D doses maybe a couple years ago, and I could see that potentially taking a while to effect thyroid function. Vitamin D is all the fashionable rage amongst doctors lately.
posted by Shane at 4:49 PM on August 7, 2011
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posted by kimdog at 10:45 AM on August 6, 2011