Discussions that mention synthroid

Hair Loss / Alopecia board


I'm a little confused about thyroid issues, and I hope someone can help.

I have had hypothyroid symptoms (+ strong family history) for years, but my thyroid tests always come back normal. For example:

TSH 0.64 (0.35- 4.94)
Free T3 2.9 (1.7-3.7)
Free T4 0.81 (0.70-1.48)
Antithyroid antibodies: normal

I found an endocrinologist who would treat me based on my clinical symptoms. I took 75 mcg of (generic) Synthroid for two months. I felt great! All my symptoms disappeared. The only upsetting thing was I lost a major amount of hair. After the two months, I had my TSH retested. I had none! The test could not detect any.

Obviously I was getting too much hormone, so my doctor recently decreased my dosage to 50 mcg of (name brand) Synthroid. He wasn't very helpful about the hair loss.

I spoke to a friend with a PhD. in pharmacology and he was shocked that the doctor prescribed any drug at all, given my normal initial test results. He advised me to go to 25 mcg for a week, then to stop taking it altogether and go to a different doctor. He said that excess thyroid hormone in someone with normal thyroid function would initially make me feel better, but that doesn't mean it is treating an actual thyroid problem. He also stated that going from 75 mcg of a generic to 50 mcg of Synthroid might not be much of a decrease at all, given the variability between thyroid drug brands.

I'm very confused as to what to do. My hair has always been my best feature, and now it is half gone... although the hair loss seems to have stopped now. I don't want to take drugs I don't need, especially if they are going to make my hair fall out of my head and produce undesirable biochemical effects.

Any thoughts? Thanks!
Quote from Zip:

I have had hypothyroid symptoms (+ strong family history) for years, but my thyroid tests always come back normal. For example:

TSH 0.64 (0.35- 4.94)
Free T3 2.9 (1.7-3.7)
Free T4 0.81 (0.70-1.48)
These really aren't "normal", but that's a mistake a lot of so-called professionals make, including your friend the Ph.D. (Although he/she is correct about the variability between brands of med.) Your free T levels are both lower than points at which most people feel well. Symptoms usually occur when either or both are below the range's median. Ideally, levels are considered optimal when they equal about 70% of the range. In your case, your FT4 should be around 1.2, and your FT3 about 3.0. "Optimal" levels can vary from person to person though. It takes some experimentation and tweaking to get things just right for you.

Once you begin taking supplemental hormone, TSH becomes totally unimportant. My own is .02, and my doctor is fine with that - because my free Ts aren't too high in, or above, their ranges. That's the real test of an excess of supplemental hormone. Your dose should not have been decreased based solely on TSH.

However, it could be that Synthroid isn't the drug for you. It's long been known that some people continue to lose hair while taking it, even if their FTs are optimal. I don't know why... but it's true. I do suspect, though, that your FTs might never have reached optimal... in which case, that might be the real reason for your continued hair loss. It's hard to say without those FT readings, or without having had a trial of another brand of drug.

My advice is to find a holistic-minded doctor, who will take your symptoms into account as much as your test results, and who knows that TSH is irrelevant when in treatment. Thyroid treatment, like most of medicine, is an art, not a science. Any doctor who approaches it with a one-size-fits-all method is not going to be successful in making his patient well.
Quote from midwest1:


My advice is to find a holistic-minded doctor, who will take your symptoms into account as much as your test results, and who knows that TSH is irrelevant when in treatment.

As I read the posts in these forums, I keep coming back to the same questions...

Why don't more doctors (especially endos) know that TSH is irrelevant once someone is in treatment?

Why don't more doctors (especially endos) know that many people have trouble converting T4 to T3?

Why don't more doctors (especially endos) know that patients shouldn't take thyroid meds the morning of their blood tests?

Why don't more doctors (especially endos) know that "in range" is not equivalent to "optimal?"

If people on this forum have this info, then the info is obviously out there. I can't seem to grasp why it isn't all common knowledge among doctors.

BTW, Zip, I've been on Synthroid since 1988, and my once-thick hair continues to fall out. I'm convinced that Synthroid alone is not enough for me. Perhaps you and I are in the same boat in that respect.
Quote from LovesTeaching:
As I read the posts in these forums, I keep coming back to the same questions...

Why don't more doctors (especially endos) know that TSH is irrelevant once someone is in treatment?

Why don't more doctors (especially endos) know that many people have trouble converting T4 to T3?

Why don't more doctors (especially endos) know that patients shouldn't take thyroid meds the morning of their blood tests?

Why don't more doctors (especially endos) know that "in range" is not equivalent to "optimal?"

If people on this forum have this info, then the info is obviously out there. I can't seem to grasp why it isn't all common knowledge among doctors.

BTW, Zip, I've been on Synthroid since 1988, and my once-thick hair continues to fall out. I'm convinced that Synthroid alone is not enough for me. Perhaps you and I are in the same boat in that respect.


My personal feeling is that we are largely ignored because there is not a great profit margin in treating thyroid problems. Our meds are cheap, especially compared to the cholesterol and mood altering drugs that are prescribed to those of us who are untreated.
Thank you all for your replies :)

I don't understand, though, why TSH is irrelevant once you are on meds. My TSH was less than 0.001 after being on Synthroid for two months. In my limited knowledge, this would mean that my pituitary isn't telling my thyroid to make any hormone, because I was getting it all from the drug. According to my endo, this is not a good situation. The idea is to supplement the hormones I was producing naturally, not totally suppress production and get them artificially. Is this not correct? He also said that although clinically I felt better, biochemically my results were not good (based only on the TSH), and if I continued that way I'd end up with a heart attack.

I feel very confused as opinions seem very different. I mean, the guy's a specialist... he doesn't know what he's doing?
[QUOTE]BTW, Zip, I've been on Synthroid since 1988, and my once-thick hair continues to fall out. .

Somehow, that doesn't make me feel better LOL

My hair isn't falling out in buckets anymore, but I'm paranoid it's because I don't have as much now. I just keep thinking, darn, what did I do to myself? I begged for a trial of meds for so long, and was elated when this endo said ok. I didn't bargain for hair loss. On the other hand, I feel great!
Quote from Zip:
I don't understand, though, why TSH is irrelevant once you are on meds. My TSH was less than 0.001 after being on Synthroid for two months.
I started with Synthroid. My TSH plummeted from 6.98 to nothing within the first month. But I felt absolutely horrible the whole time - sicker than I was before. After 6 weeks, the free Ts were slightly above the lab range... too high... and I had become officially hyper, which is why I felt so bad. The dose was reduced to the smallest possible, but still I was hyper after 6 more weeks. The endo (who should have known what to do next, but didn't) told me to stop the med and "wait". Wait for what? To get sicker? Knowing that most of the successfully treated folks I've seen on the Board were all taking Armour thyroid, it became my mission to find a doctor who understands its benefits and would consider Rx'ing it for me. A month after stopping Synthroid, I started Armour, and the rest is history. It never once made me hyper, and it's working wonders. I'm 95% my old self again. And yes, my own TSH has been suppressed. But even if I had any, it would be like stomping on the gas pedal when the tank is empty. That is, all the TSH in the world isn't going to prod my dead thyroid to life. And because TSH has no purpose in the body except to spur the thyroid into action ... Why should I be concerned about not having any of it? [quote]In my limited knowledge, this would mean that my pituitary isn't telling my thyroid to make any hormone, because I was getting it all from the drug. According to my endo, this is not a good situation. The idea is to supplement the hormones I was producing naturally, not totally suppress production and get them artificially.Why not? TSH must be totally suppressed for thyroid cancer survivors. Their T hormones must be provided completely by "artificial" means. They don't end up with heart attacks (nor osteoporosis, as is often claimed) any more frequently than hypo folks who go un- or undertreated their whole lives. And as for that term "artificial"... The T4 and T4/T3 provided by meds are bioidentical to those the body produces naturally. There's no reason to think they're inferior. [quote]He also said that ... if I continued that way I'd end up with a heart attack.The only way that would happen is if your FT4 and/or FT3 were too high in the lab range, causing thyrotoxicosis. It would have nada, zilch, zero, nothing to do with your TSH. You risk heart attack much more if you go undertreated, because hypoT is the second leading cause of elevated LDL cholesterol.
[quote]I feel very confused as opinions seem very different. I mean, the guy's a specialist... he doesn't know what he's doing?Well, you'd think so, wouldn't you? The truth is that medical science takes centuries to abandon that which doesn't work. [It took a full ten years after the discovery of the bacterium which causes stomach ulcers for the Powers That Be to accept it as reality.] In truth, there was not much wrong with the way medicine treated hypoT before the inventions of Synthroid and the Almighty TSH test. People took dessicated thyroid in doses far higher than today's averages, and people got better. Synthroid's manufacturer did a hard sell by way of scare tactics, kickbacks and contributions to medical schools that will take decades to reverse... if it ever happens. Your doctor is probably like the thousands who don't like to think outside the box.... Who blindly accept as gospel whatever was told to them in med school, never accepting that what doesn't work should be looked at more objectively.

There are enough experts who know that it's the free hormone levels that count to keep believing that TSH is most important. Look into the works of Dr. John Dommisse, Dr. John Lowe, Dr. Anthony Toft, Dr. Kenneth Blanchard, Dr. Jacob Teitelbaum.... there are more, but that should serve as a start.
Quote from wanttobehealthy:

I was diagnosed with pituitary hypothyroidism & my test look much like yours.

.


WantToBeHealthy... Your tests results when you were diagnosed looked like mine did before treatment?? My endocrinologist looked at my results and told me they looked great. He was treating me with Synthroid based on my symptoms only. It was only after treatment that my TSH plummetted to nothing.
[QUOTE=Christine L]I have some experience with the hair loss issue. I lost a good deal of my hair in patches last year and it became thin and lifeless.

Christine, thanks for the info. My hair loss only started after I went on Synthroid... it's not a dermatological or a post-menopause problem. Thankfully, I didn't lose any all in one spot... it came from all over. And it doesn't look weird to other people--it's just bothering ME, because I can see and feel the difference. It seems to have stopped now, so maybe my body had to get adjusted to the meds.

I'm glad yours came back!
TSH 0.64 (0.35- 4.94)
Free T3 2.9 (1.7-3.7)
Free T4 0.81 (0.70-1.48)


These are the numbers wanttobe is talking about, I think. Are they, or are they not, your levels before you began taking Synthroid?
Assuming they are untreated levels, they aren't "normal", and deserved a trial of hormone. The lowish TSH coupled with the low FT4 signal a problem, although most primary doctors aren't savvy enough to know it.

Just so you know, there is no "normal" in thyroid matters. Everything is subject to interpretation, and some MDs aren't very adept at interpretation. The lab ranges include values for 95% of the total population, who are all considered to be healthy. So then, it is assumed that only the 5% who test outside the ranges are sick. We know for fact that at least 20% of the population has thyroid disease, so some people with values at the extreme ends of "normal" - those just barely within range - are being overlooked and go untreated.
What's "normal" for one, is not normal for all.
Quote from midwest1:
TSH 0.64 (0.35- 4.94)
Free T3 2.9 (1.7-3.7)
Free T4 0.81 (0.70-1.48)


These are the numbers wanttobe is talking about, I think. Are they, or are they not, your levels before you began taking Synthroid?
Assuming they are untreated levels, they aren't "normal", and deserved a trial of hormone. The lowish TSH coupled with the low FT4 signal a problem, although most primary doctors aren't savvy enough to know it.

l.


Yes, those are my levels before I started taking the Synthroid. The endocrinologist was the one who said they were great... "solidly normal" in fact.

Can pregnancy affect thyroid hormone levels? The first time I ever had my thyroid tested was about eight years ago, when I was newly pregnant. I wasn't having any major symptoms, I was just curious, since I have a strong family history of hypothyroidism. My T3 uptake came back as abnormally low, and my obstetrician dismissed it, saying it was due to pregnancy. ((Then why did you test me, if you were going to dismiss an abnormal result anyway??))
Quote from dogtired:
Zip I started using Nioxin about three months after my hair started falling
out.It took about a month but (knock on wood) my hair has stopped
falling out and it wasn't b/c my thyroid problem was corrected either
I'm still in a state of flux so this leads me to believe it actually was
the Nioxin that helped. I feel for you hon...I remember how horrible
I felt when it was happening.


Thanks :) At first I thought I was imagining it, because I read on the prescription insert that Synthroid may cause hair loss. I was telling myself, oh stop it, now you are becoming a hypochondriac. Right about the time I could tell my hair was noticeably thinner, my husband said, "Are you losing your hair?? I've been finding it all over the house for weeks!" Wahhhh. Poor me :)

(And then there are the people who dismiss it with, "Oh, you have plenty of hair." Uh, gee, thanks for your sympathy...)