Dear Sara,
My doctor refuses to increase my Synthroid, even though I am still
having about a dozen hypothyroid symptoms. My TSH has come down from
9.4 to 4.3, and he says now that it is "in normal range" and that I
am fine. He feels that if it gets any lower I will be in danger of
getting osteoporosis. So he is treating major complaints (high blood
pressure, heart palpitations, sore muscles and joints, heavy, long
periods) with other medications, and treating side effects of those
medications with more medications. I feel like a drug store! Is there
a "magic number" for TSH, below which I am in danger of bone thinning?
Is the effect of hypothyroidism more or less dangerous than
osteoporosis?
Doris P. Dear Doris, Wow! Sounds like you are a walking drugstore! My concern isn't what the "magic number" for TSH is (and no, there isn't one, just a range, as discussed in my book), but what the "magic doctor" is for you. Doesn't sound like you have one right now, and you might do well to forward your chart to another primary care doctor (an internist, FP or GP) or an endocrinologist and get a second opinion. Refer to my book for the section on thyroid disease and osteoporosis again. Yes, hyperthyroidism can aggravate or worsen osteoporosis, but there are now drugs that can build bone mass; there is estrogen/progesterone therapy (estrogen only if you no longer have your uterus), and there are also diet and lifestyle changes you can make. Walking around hypothyroid isn't fun, and you ought not to be expected to remain hypothyroid.
Dear Sara,
My question is, is it because thyroid disease is predominantly a
woman's issue, that it often is misdiagnosed or in many cases, not
even a consideration and is generally thought to be in our head, just
like PMS was for years?
Shelley P. Dear Shelley, The short answer is YES! There are a lot of feminist writers and feminist bioethicists who maintain that our medical system in the Western world continues to be oppressive to women. My favourite feminist philosopher and bioethicist is Laura Purdy, who writes:
"It hardly needs saying that despite considerable progress for women in recent years, men-mostly white, middle-class, heterosexual men-still in charge, both in society generally and in the medical profession, and, consciously or subconsciously, choose social arrangements that reflect their perceived interests. Worse still, individual practitioners may still be gripped by common sexist-even misogynist-attitudes for which medical education currently provides no antidote_ [For example,] how could we have been so oblivious to the gender differences in physician-patient relationships, differences that lead doctors to suppose that women need tranquilizers when the same symptoms in a man suggest a heart workup." (Purdy, Laura M., Reproducing Persons: Issues in Feminist Bioethics; Cornell University Press, 1996:2-3.) I hear from women all the time who have terrible stories about the thyroid misdiagnosis/it's all in your head merry-go-round. This is why I'm currently working on The Thyroid Sourcebook for Women, to be released sometime in 2000.
Dear Sara,
1. Has there been research into relative effectiveness and/or
relative risks of T4-only drugs versus T4/T3 combinations (natural or
synthetic) for TSH suppression to prevent thyroid cancer recurrance?
2. After diagnosis, thyroid cancer patients never again have normal
thyroid hormone levels. We're either slightly hyperthyroid from
suppression therapy, or very hypothyroid to prepare for a scan. What
are the long-term effects of both states and of putting our bodies
through these variations, and what can we do via diet, supplements,
etc. to minimize any negative effects?
3. Some thyroid cancer patients do not tolerate suppression therapy
and slight hyperthyroidism as well as others. Instead of weight loss,
heart palpitations, and lots of energy, we experience exhaustion and
weight gain, even at the upper desired limit of TSH for suppression.
What can we do to overcome these effects (alternative medications,
supplements, diet, exercise, etc.)?
Kathy S. Dear Kathy, In answer to your first question: not to MY knowledge. But that doesn't mean some thyroid researcher somewhere isn't doing it. You should contact The Thyroid Foundation of America with that one; they might have more information on specially funded research projects. I tend to hear about these things once they're published in a medical journal. As for the second question... TSH suppression dosages for thyroid cancer patients should not mean that you walk around feeling hyperthyroid; the slightly higher reading will be detected by a lab, but it often doesn't produce symptoms. If you are at risk for osteoporosis, the higher dose could aggravate your risk, or the condition, but there are ways to deal with this (see an earlier question above). As for scans, you shouldn't need to go for "regular" scans once you're cancer-free. The only time you would need an additional scan after your initial treatment, is if there were reason to believe the cancer had returned. Thyroid cancer recurrence is pretty rare! In the 15 years since I've been treated for thyroid cancer, I've only had one scan done since I was pronounced "cured" -- and that was because there was concern over a recurrence. (Turned out that I was fine!) That said, for the short time you're hypothyroid prior to your scan, the damage is completely reversible once you're back on thyroid hormone. As for your third question, you should not accept "exhaustion" and all the other symptoms you describe as just "one of those things" you must put up with because you are on a TSH-suppression dosage. Your doctor should be experimenting with different dosages, brands, or regimens (such as 6 days a week on dose A versus 7 days a week with dose B) to get you BALANCED AND FUNCTIONAL. The bottom line is that if you are not tolerating your dosage, it must be adjusted until you ARE tolerating it. Of course, taking care of yourself in other ways, such as proper diet and exercise are crucial to feeling well. You should also rule out other causes (organic or "social") for exhaustion, weight gain/loss, etc. before you adjust your thyroid medication. Just because you have a thyroid problem, doesn't mean you can't have ANOTHER physical ailment to boot!
Dear Sara,
I have three questions for you:
1) I believe the "normal range" for TSH bears further scrutiny and in
fact, should be re-established at 1.00-2.00. Do you agree? There is
new research published, which indicates that the way the "normal
range" for TSH is establish is somewhat suspect. Many of the patients
not diagnosed as hypo and included in the general sampling of tsh
levels (that is used to establish the normal range) go on to develop
hypothyroidism and are, in fact, borderline hypo while their blood is
being used to establish the normal range. A "perfectly healthy'
population, according to this study, would generate a tsh of .8 - 1.2.
With this research and knowledge available, doctors still routinely
dismiss hypo symptoms reported by patients with tsh levels of 3-5.00
and this is a shame.
2) How do estrogen levels and thyroid function or levels relate?
During my menstrual cycle, it seems to me that the higher my estrogen
levels, the less T4 I absorb. I feel most hypo before my period
begins. I know these two hormones compete for the same receptors in
the intestine but am not sure at what time of my cycle I would
supplement with more T4 or if that would work, at all. Since
beginning treatment with Levoxyl, I experience a much heavier flow and
many more PMS type symptoms that did not impact me while I was hypo -
is this related to my treatment?
3) Conversion problems: what causes them? I am routinely tested
with a borderline high T4, and a borderline low t3 level. Since t3 is
the active thyroid hormone, as you might imagine, I am not optimally
medicated but I cannot add more t4 without risking hyper symptoms. I
know the conversion occurs via the liver, and I have tried to add
supplements and amino acids that I may be lacking, but short of taking
T3, are you aware of anything else I can do to improve conversion?
Alyson H.
Dear Alyson, I agree with your evaluation of the "hypo scene". Current ranges are for statistics, not individuals, and it is clear in research as well as clinical practice that individuals do not always fall into general "guidelines" or categories. Check out my section in the book on subclinical hypothyroidism; this is gaining more attention, and as we age, more people will be diagnosed with hypothyroidism that is not "on the charts" yet. As for your second question, we know that estrogen and progesterone levels influence many other hormones, as well as insulin levels and blood sugar levels. The best advice is for you to chart your premenstrual symptoms, and if you feel you need to adjust your thyroid medication around that time, discuss it with an endocrinologist. Feeling tired, moody, and so forth, are also just plain premenstrual symptoms which many women with healthy thyroids experience, too. Hypothyroidism and hyperthyroidism definitely affect your flow, cycle length and other menstrual "dynamics". So experiencing a change in menstrual cycles after beginning thyroid treatment isn't only normal, but should be expected. I discuss this at length in the book! Your third question tells me that you're probably not feeling well on your current thyroid medication dosage; that your doctor probably is telling you that you're fine, or giving you a very TECHNICAL explanation about how your drug is being absorbed, converted, and so on. My advice is to take all that technical jargon and dump it somewhere. The problem is that you're not on the right dosage or dosage regimen. You need to discuss how to "feel well" with your doctor on a dosage that's right for YOU. Whether that means taking dosage X 6 days a week versus dosage Y 7 days a week remains to be seen. But if you're not feeling well on your current dosage, it must be adjusted until you do. If your doctor isn't willing to work with you, find someone who will.
Dear Sara,
A couple of years ago when I first was diagnosed with Hashimotos, I
bought your "Thyroid Sourcebook," and took it with me where ever I
went (I work as a Flight Attendant). I was most upset one evening to
see that I had left the book on my last airplane. When I called back
to the airport, no one claimed having seen it. At first, I was
angry, but then I came to realize how common the disease was and
quickly found forgiveness. Whoever had taken it must have needed it
more than I.
When I went back to work, I was also shocked to find that of 8 of us
being trained, 6 of us had Thyroid disease. That was also an eye
opener. At first I was shocked and thought perhaps we Flight
Attendants were more exposed to cosmic radiation, but then I also
began to see that most people have someone in their lives who has
Thyroid disease.
I know that, in order for you to update your book, you consult many
professionals. Why is it, given our advanced technology and research
methods, that the TSH is becoming overused as the be all and end all
of diagnosis, that the doctors are sloughing off the responsibility of
informing patients of their disease and what this chronic illness
entails once the precious pill has been prescribed, and that patients
are still being treated as though they belong in mental institutions
rather than on a higher dose of medication? These are my questions,
of which I am sure you are very familiar, but which may not be
answerable. May I simply ask then, what do you think we ordinary lay
people could do to make the future brighter for those who are
diagnosed and live their lives with thyroid disease?
Pauly
Dear Pauly, A study ought to be done to evaluate whether the radiation to which flight attendants are exposed is responsible for an increase in thyroid disease in that population. (My guess is that it is!) Exposure to radiation can DEFINITELY and indisputably put you at greater risk for thyroid disease. As for your comment about doctors doing "drive-thru" diagnosis and treatment of thyroid disease, this is representative of the way medicine today is practiced at large, and is a sad comment on the deterioration of doctor-patient relationships in light of managed care, and cost-effectiveness. The only way to remedy this is for patients to realize that they have a right to be fully informed about all treatments, risks, potential benefits, and so forth. This is what is known as "informed consent" and is the subject of numerous articles in clinical ethics literature. You have the right, as a patient, to as much information as you want or need to make fully informed, autonomous decisions. And you have the right to refuse treatments, or even the right to make bad choices or decisions, without necessarily being questioned about your "ability" to make a decision. Once again, educating yourself about your disease is the best defence. Knowledge is power.
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