"I'm not sure what to do now." Get a different doctor... if she can't look at your actual thyroid hormones and see that they're below range and tell from that, and your symptoms, she shouldn't even be treating a thyroid patient...
TSH neither causes nor alleviates symptoms, nor does it cause osteoporosis or heart problems. It's high Free T3 that might cause those things, particularly the heart issues, but keep in mind that having too low thyroid hormones can cause heart problems, as well. Having too low thyroid levels causes bradycardia, too low heart rate, which can be dangerous, too. As you know, and anyone can see, you're a long way from having too high levels of Free T3. Unfortunately, doctors are taught in med school that TSH is the end all, be all of thyroid and that's what they look at, forgetting that cells in the body don't use TSH, they use Free T3.
It's not unusual to have suppressed TSH, when one is on adequate levels of thyroid hormones.
"Would you just ignore this endo and find another?" As I said at the beginning of this post: Yes, yes, yes... only you don't have to have an endo. Many endo's are not good thyroid doctors. If you have a good primary care doctor that won't insist on adjusting your medication based on TSH, you can let them manage your thyriod. An internist, naturopath, some states allow nurse practitioners to practice as primary care physicians and many are very good thyroid doctors... any doctor you find that won't adjust meds, based on TSH will be fine and no doctor should compare your symptoms to their own...
Thank you. For your advice and support. I have a couple of more questions if that's okay.
First, more rhetorical...why do we know this and doctors don't?! How is this broken medical model still mainstream? And, less rhetorical, how do you find a doctor who will listen? Does anyone have any hints?
Second, every doc I asked (both my surgeon and this endo) dismissed any possibility that there would be an issue with my pituitary that's causing the inaccurate TSH. Is it really that remote a chance? Something they just don't want to see? I don't understand how my TSH was always normal but my levels were low or below range.
Thank you again for the help. This means so much to me.
There was a survey that showed that most doctors' practice what they learned in med school on average 17 years ago, and that information is basically what is shown in the AACE/ATA Guidelines for Hypothyroidism.. They are so busy with their practice that most don't take time to keep up to latest info in medical journals, or spend time in seminars set up for medical people. It is more expedient to just diagnose and treat based on TSH, per the Guidelines, even though only about 10-20 % of hypothyroids patients are satisfied with such treatment. Only those who pay attention to dissatisfied patients and spend a little time trying to understand why tend to make any changes. This seems more prevalent with M.D.'s and Endos than with D.O.'s, Integrative Doctors, and Naturopathic Doctors. I had a D.O. tell me that the reason she did not have the "Immaculate TSH Belief" and use "Reference Range Endocrinology" was that she was trained to treat patients,not lab results.
The Guidelines are deficient right from the start because they don't even define hypothyroidism. They just assume that it is inadequate thyroid hormone. Even if this were correct, why use TSH as the surrogate for thyroid hormone levels when it doesn't correlate well with either Free T4 or Free T3 levels. This is evident in the graphic in Ref. 30 on page 24 of the following link.
Next thing of importance is that the correct definition for hypothyroidism is "insufficient T3 effect in tissues throughout the body due to inadequate supply of, or response to thyroid hormone." This definition recognizes that there is far more involved in hypothyroidism than just Serum TSH (and sometimes FT4). There are additional processes and variables that affect Tissue T3 Effect. As mentioned TSH does not correlate well with either FT4 or FT3, and has a negligible correlation with Tissue T3 Effects, which create a person's thyroid status as either hypothyroid, euthyroid, or hyperthyroid. There is no biochemical test that can be used as a pass/fail decision about a person's thyroid status. Instead of just relying on TSH, a doctor should use an integrated approach: a full medical history, evaluation for signs/symptoms that occur more frequently with hypothyroidism than otherwise, and extended biochemical testing. Even with that a tentative diagnosis of hypothyroidism is a probability theory that must be verified with a therapeutic trial of enough thyroid med to raise FT4 and fT3 levels into the upper half of the range. If symptoms improve, then the diagnosis is confirmed and the med dosages should be revised as needed to optimize.
Your relatively low TSH levels way back, along with low FT4 and FT3 are indicative of central hypothyroidism. Central is a dysfunction in the hypothalamus/pituitary system that results in TSH levels inadequate to stimulate the thyroid gland. Doctors like to believe it is rare, but that is likely die to only being diagnosed rarely.
As for suppression of TSH, that is a very frequent occurrence when taking thyroid med adequate ot relieve symptoms. You can also read about this in the link in
Recommendation13 starting on page 13. Taking a full dose of thyroid med once or twice daily establishes an equilibrium among TSH, FT4 and FT3 that is quite different from that with the usual continuous low flow of natural thyroid hormone in the untreated state. One of the references in Rec. 13 is to a study that showed that all central hypothyroid patients had suppressed TSH levels when taking adequate thyroid med to relieve symptoms. You will also find info to refute that suppressed TSH causes osteoporosis.
I am laying all this on you so that you are better prepared to be your own best advocate for your health. You certainly do need another doctor and if you will tell us your location, perhaps we can suggest a doctor that is recommended by other thyroid patients,
atalanta... gimel has given you lots of information to look through, but I'll go ahead and answer your questions very simply:
WE know this we because we deal with it on a daily basis when we have to put up with the decreased dosages our doctors insist we need because we have suppressed TSH levels and too low thyroid hormones. We listen to our doctors give the hogwash information about how the suppressed TSH will cause osteoporosis and/or heart problems and any number of other things they care to come up in order to scare us into submission so we won't question their stupid ideas or argue with their wrong information.
OUR DOCTORS don't know this, because, they don't listen to us. They insist that the weight or fatigue we can't get rid of can't be thyroid related, if our TSH is within the reference range and for goodness sake, if it's suppressed, we *have* to be hyper and they're of the opinion that we'll drop dead of a heart attack or our bones will begin shattering at any moment... And yes, as gimel says, that's mostly because they're going by outdated information; information they got 15-20 yrs ago when they went to medical school or that one seminar they decided they could come out of the office to attend. ATA/AACE guidelines are updated every year or two, but they rarely do anything to help patients. The one thing that's in favor of patients is the sentence that says stipulates that they're only guidelines and that each case should be treated on their own merits, but guess what... most doctors don't know that's in there...
As for the pituitary gland - it's considered "the master gland" and most doctors don't consider the possibility that it can malfunction. Secondly, they're so centered on the TSH that even when it's low enough that it doesn't stimulate the thyroid, they don't catch it, because they don't look closely at the Free T4 and Free T3; they simply lock in on TSH and if it's "in range", they think it's good. When they make it all about the TSH, they can pretend all of us are "healthy"...
This is how this broken medical system remains mainstream... conventional medicine goes by conventional standards and conventional standards say that TSH is king!!
As gimel noted, we may have a doctor listed in your area, but if not, you can often, interview doctors (or their nurses) prior to making an appointment, by calling the office and asking a set of questions about how that doctor treats thyroid patients. If you don't get the right answers to your questions, move on and don't waste your time with that doctor.
Wow. I am overwhelmed with gratitude. Thank you for all this detailed information. I love being armed with knowledge!
I live in Calgary, Ab, Canada. Happy for any referrals or help.
If I can ask one final question regarding central hypothyroidism...does it matter for treatment? I mean, does the treatment differ because there might be a pituitary issue (beyond, I imagine, checking out other pituitary hormones). I know my situation is different than typical central hypothyroidism because I now have no thyroid at all but it feels important to ask.
I'm going to read the suggested resources now and thank you both again for your time and energy. This has truly made a difference in my outlook and my peace of mind.
I just sent you a PM with info. To access, just click on your name and then from your personal page, click on messages.
I'm sure gimel would have told you, but central hypothyroidism is still hypothyroidism and needs to be treated, just like hypothyroidism by any other cause. You're right that other pituitary hormones need to be tested to make sure there are no other endocrine malfunctions. If you find a good doctor, they should do an MRI to make sure you don't have a pituitary adenoma causing trouble.
If there is a pituitary adenoma, it may be able to be removed, preventing other endocrine imbalances.