I was wondering if you could clear something up for me. I can’t get a good answer from my doctor.
If your patient has had a thyroidectomy, and you see him yearly for checkups, why would you only check TSH and not the actual thyroid hormone? Back when I was under the care of an endocrinologist, he told me I didn’t need him as long as my primary kept my TSH low (0.2 to 0.5).
I’m on what I consider a fairly high dose of levoxyl (0.125mg). My TSH is in the normal range, my primary insists it’s OK, and won’t order a thyroid level, saying it’s unnecessary. Isn’t the whole idea of hormone therapy to keep the TSH low so what’s left of my thyroid is supressed?
T4 is the predominant form of thyroid hormone, and the active ingredient in most thyroid hormone pills. It can be measured accurately, but this only tells your doctor if your T4 level is within the same range as 95% of “normals”, not whether it is the right level for you.
TSH, however, measures whether your pituitary is “happy” with this amount of thyroid hormone.
Nl range free T4 = 0.8-1.8
TSH = 0.5-5.0 (NB: Actual normals vary with testing facility)
Let’s take an average person. Their T4 level is 1.3 & their TSH is 1.0 (asymmetric distribution of TSHs). If something goes slightly wrong with their thyroid, the T4 level might fall to 1.0 & still be in the normal range. But their TSH would be likely to increase to 10 & reflect the deficiency. Conversely, if there thyroid started mildly over-producing thyroid hormone, their T4 might go up to 1.6, & again, still appear normal, but their TSH might fall to 0.1, indicating that the pituitary was beginning to respond to the excess…
So if your thyroid hormone levels are not rapidly changing & there’s no reaon to suspect pituitary dysfunction, the TSH is lots more sensitive than the T4 value in assessing whether your current dose is right for you.
It sounds like there is disagreement between your primary care provider & your previous Endocrinologist as to what the treatment goals should be.
This is tough - deciding where to keep your TSH is trickier than some primary care providers realize, but they are perfectly capable of adjusting your thyroid hormone dose to get you there, once they’re really aiming for that range.
Deciding on where your TSH should be kept depends upon a number of factors - what condition prompted the surgery in the first place, how completely the surgeon removed the thyroid (almost always a little tissue is left behind), how old you are & what other medical conditions you might have.
This allows your doc to balance the risks of keeping you slightly hyperthyroid (TSH .2-.5) vs. the risks of someday needing repeat thyroid surgery if your thyroid grows back. (You’re right about the goal being to suppress your TSH to decrease the possibility of regrowth necessitating repeat surgery). I can’t help you there, except to suggest that you tell your primary care provider that you’re not comfortable just keeping the TSH in normal range, could he please talk to your Endocrinologist & find out why he should keep it in the suppressed range?
If you get no satisfaction there, get a different primary care provider, or insist that insurance company/HMO pay for follow-up with the Endocrinologist; tell them it’s cheaper than repeat surgery…
Bubba, I’m just wondering: Why not ask your own doctor this question? I mean, why post a message to somebody you don’t even know on the web? I’m not trying to impugn Sue’s character, and haven’t even read her response. For all I know, she has given you a 100% accurate answer. But she’s still just a name on a web page.
A note to everybody from me as a user (not acting in any official moderator role, especially since this isn’t my area) : Remember that this medium is only as reliable as the people make it. Please check out any medical advice you might get here.
David, did you read Therealbubba’s opening paragraph? She said:
This is because most primary care providers get 10-12 minutes max per visit, which translates to 7-10 minutes face-to-face time. Many will not/cannot routinely take time to answer these kinds of questions.
Also, please note that the question here was not should I take .125 mg or .150 mg, but rather, why does my doctor rely on just the TSH.
Message boards & web sites are good sources for that kind of information, as long as the questioner realizes that they cannot review the credentials of the information furnisher.
To answer some of your questions, I had a suspected thyroid carcinoma at age 35 (I’m 40 now, male). A lump was found during a routine checkup. It was found I had a cold nodule. Several attempts at FNA were inconclusive. Surgery followed with removal of the left wing and middle lobe (?). Pathology was done while I was on the table and it was found to be an adenoma. They left the remaining tissue in and told me I was lucky.
My insurance carrier won’t pay for the thryoid hormone level (T4?). Is it worthwhile for me just to get it anyway and pay for it out of pocket? It hasn’t been checked in 5 years, just the TSH, CBC and fasting blood sugar.
My concern was should I face the possible side effects of going even higher on the levoxyl to be hypothyroid? If I’m euthyroid, isn’t that little piece of tissue left in my neck still working? My only other problem is I have to take a betablocker for primary hypertension, which is controlled. Otherwise, I consider myself to be in very good health.
First, my apologies for the mistaken gender assignment…
I really don’t see any real need to check the T4; however, if you’re unconvinced, then paying out-of-pocket to check it may have fewer side effects than sleeping pills
First, going UP on the Levoxyl would make you more hypERthyroid (too much thyroid hormone), not hypOthyroid (too little thyroid hormone). Second, being euthyroid simply means that the total amount of thyroid hormone in your system is right for you, but doesn’t address whether any, some, or most of the thyroid hormone in your system is coming from your own thyroid tissue as opposed to the pill. If the TSH is suppressed, virtually all of the thyroid hormone would be coming from the pill.
Keeping the TSH in the 0.2 - 0.5 is pretty harmless; going below 0.1 clearly puts you at somewhat higher risk for atrial fibrillation (fast irregular heart beat which can cause strokes) and faster than normal bone loss leading to osteoporosis. If you had blocked coronary arteries, it might cause you to get chest pain, or angina, more often, but does not in itself, cause blocked arteries. Based on what you’ve told me, I would recommend trying to get one more follow-up appointment with your Endocrinologist to discuss the risks & benefits of keeping TSH normal vs. slightly suppressed, and to clarify your treatment goals (in writing) to let you feel more comfortable working with your primary care provider.
[[Message boards & web sites are good sources for that kind of information, as long as the questioner realizes that they cannot review the credentials of the information furnisher.]]
And - as informative as Sue’s answers are - as long as online doctors realize the limitations of any information, suggestions, or diagnoses (god forbid) given to a patient sight-unseen, and based only on described symptoms and described treatments. The IRL doctor might be inadequate, but he or she is dealing with a more holistic picture of the patient.
I, for one, would be suspicious of a doctor who did not even resort to even the most basic information gathering before rendering a diagnosis/prognosis/second opinion/drug recommendation/etc. I would expect even the most egregious of the cost-cutting HMO doctors might try to determine your gender beforehand.
I’ve said it before, and I’ll say it again: for personal medical problems, the best advice is to see your doctor. If you don’t trust your doctor, or he is not forthcoming with the information/reassurance you seek, find another doctor who will examine you and treat you in the manner you deserve.
It’s one thing to ask about fuel injectors or brake shoes online, but quite another to entrust your pituitary hormone levels to someone you’ve never met and is not privy to the most basic of your personal medical history. I wonder what the ethics committee of the American Medical Association has to say about doctors who routinely treat “patients” sight unseen.
If you’d been found to have elevated levels of prostate-specific antigen in your blood, would you trust a cyber digital rectal examiner who called you “ma’am” and told you it was nothing to worry about?
This is essentially what I was going to say. If Bubba’s doc won’t take the time to answer his questions, Bubba should find a new doc – or sit there and ask until he gets the answers he needs. Yeah, the doc may be running around, but he still has an obligation to Bubba as a patient. If a doc gives a quick answer and the patient doesn’t press the issue, the doc is likely to figure that was all that was necessary. As much as docs run around, I have never had one in such a hurry that s/he was unwilling to answer my questions, even when I went into detail that probably wasn’t necessary.
Oh, man, I almost fell out of my chair laughing at this one.
I personally appreciate Dr. Sue being willing to take time from her busy Army practice (yes, she is indeed a Major) to share her expertise, which is as an endocrinologist. And I’m surprised at the impled criticism from three moderators, one after the other (well, I’m surprised at the criticism from two of them, anyway), to Sue answering this person’s question. She was not diagnosing, she was not attempting to treat, she was providing specific information to answer specific questions, and if you go back and read her posts, at least TWICE she tells this person that he should go back to his own doctor with that specific information, and to follow up his own endocrinologist for further discussion and to determine whether the concerns he has already expressed are valid.
While in certainly true that you don’t want to rely on an unknown person posting on a web board for your care and treatment, it’s also true that this can be an excellent source of information in a hurry, which can allow one to be better prepared to ask their treating physician questions and understand the answers in the 12.5 minutes the HMO pays for them to be in contact. Not only that, there are millions and millions of people who have absolutely no access to primary care because they have no insurance. To such a person desperately seeking information, the web may be the best source they can find to help them make a decision about what to do. It ain’t a great system, but for some people it’s all they have.
Oh, and by the way, there are MANNY instances when doctors, specifically certain specialists, can and do render their opinions without ever seeing the patient, based on the medical information provided to them.
Sue, thank you for all that you do, and for being willing to share your expertise with others. Without charge, even! (Good thing, or heaven knows what my bill would be at by now!)
What I have consistently tried to do on this and other boards is to answer posters’ questions with factual, impersonal type information (e.g. Why do doctors rely on just TSH testing instead of TSH + T4) When personal medical issues have come up, I provide some information & tell the poster to discuss this further with their doctor(s). When needed, sometimes I try to help focus a poster’s vague uneasiness on a couple of specific issues that he/she can then discuss with their doctor. I freely admit to not knowing all of the details needed to diagnose or treat someone, and do not do this. I do strive to provide enough information to increase the posters confidence in discussing their issues with their doctors, and sometimes will make specific suggestions about things to ask about (like the risk of osteoporosis, Atrial Fibrillation & angina while maintaining higher than normal thyroid hormone levels) to help them focus their discussion on what they are really worried about. This is not diagnosing or treating a condition; this is helping the poster get the most from the few minutes they do have with the doc.
The particular question that the OP asked about the TSH & T4 is one that a good many competent primary care doctors can’t answer quickly & easily because they’re seldom asked. As an Endocrinologist, a week doesn’t go by that I don’t explain this to patients (and doctors-in-training as well.)
This particular question is really not different in nature from many that are fielded routinely by Cecil in his columns or by the SDS in the Mailbag. I do have expertise in this area & enjoy helping people understand what can seem like complex problems. In many ways, what I really do for a living IS teaching patients about their conditions & how to manage them.
AOL pays doctors to do much the same thing in their Ask-A-Doc program, which is highly popular. The ground rules there are that the docs answer questions, explain hows & whys, and direct patients to web sites run by reputable sources (CDC, Mayo, Johns Hopkins, etc). The line between diagnosing & helping patients get the most from their doctor visits, however, does sometimes get fuzzy, as this “spectrum” illustrates:
I must admit to some puzzlement, then, to find that not one, but three, moderators have chosen to take issue with my answers (which do end with see your doctor). One moderator apparently can’t be bothered to read what I wrote before criticizing the OP for even asking the question. Another moderator hides behind “wondering what the ethics committee of the American Medical Association has to say about doctors who routinely treat “patients” sight unseen”, when I have done no such thing. He further makes a snide allusion to my not knowing whether the OP was male or female, when the core question about TSH testing is gender-neutral. The third moderator doesn’t say anything out-of-line; I’m curious, though, why she felt the need to echo what had largely been said previously.
I sincerely hope that these posts were not due to bad feelings from previous exchanges, or because of who’s friends with whom. I also hope that some of what I’ve posted above demonstrates that I am cognizant of what is, and what is not, appropriate for this forum. I fully intend to continue answering medical posts that interest me when I have time to read this board & provide a reasonably complete answer.
Ah, I was wondering what the “Major” part was. I just thought it was as opposed to being a “Minor” MD.
I would like to see where you find any “implied criticism” of Sue in the message I posted. I specifically stated, “I’m not trying to impugn Sue’s character, and haven’t even read her response. For all I know, she has given you a 100% accurate answer.” I also take issue with your acting as though this was done in some official moderating capacity, when I specifically said that I was talking as a user, not a moderator. (If you weren’t implying some official capacity, why bother to note that “three moderators” mentioned it?)
See what I just said to Melin. I was not necessarily taking issue with your answer, nor was I acting in any official moderator role. I would have made the same point if I were a user, or if the same discussion had been going on elsewhere.
I didn’t criticize him for asking, I simply noted that getting medical information on a web message board is not perhaps the best idea in general. I gotta tell you, you seem overly eager to go on the attack here, Sue. I didn’t criticize you; I didn’t act as a moderator; so what, exactly is your problem with what I said?
I know mine wasn’t. But your response does, I must say, look like previous exchanges may have played a part. Please reread what I said and take it for what it was. There was no hidden meaning.
David, yours was certainly the lightest of the posts, too, although I notice you weren’t above repeating Nickrz’ cheap shot about not knowing the gender of the OP and then laughing about how funny it was. Particularly when Nickrz was showing his ignorance in not knowing that there are many things which are gender neutral, and the OP’s question was one of them.
And the “moderator” title shows up next to your name whether you disclaim it or not. I disclaimed it in a certain post I made a couple of months ago, specifically stating that I was posting as a member and not a moderator, and was told that it didn’t make any difference, that moderators were held “to a higher standard.” You might recall that.
What I’m really objecting to here is that three moderators felt it necessary to jump in and criticize the OP and, by implication in some posts and directly in others, Dr. Sue, as opposed to simply making the point you originally made about obtaining professional information in a medium such as this. Your first post, and Jill’s post, were informative and got the point across; one of them should have been enough but two was overdoing it. Nickrz’ post was excessive, obnoxious, insulting, and borders on defamatory. There was no reason for it, and no excuse for it. Dr. Sue was not attempting to diagnose and treat, she was providing information and urging the OP to go back to his own health care provider to discuss what was going on with him.
First off, I want to again thank Major Sue, MD for her expertise. Second, I want to apoligize to her for all of the trouble my OP may have caused.
Although I don’t work in the field anymore, I am a Registered Respiratory Therapist. I feel comfortable in asking a question like I did in a forum like this. It was very clear to me that the doctor was not making a diagnosis. I asked her the question because I felt comfortable in doing so based on reading numerous posts she’s made. An Endocrinologist pacticing in the army can only be in it for the love of healing the sick, instead of so many docs today who are focused on profit.
I think the moderators may be concerned with this MB turning into a medical advice column, and the liaibility that can go with that. That is certainly a valid concern.
Again, sorry to all for any bad feelings, that was not my intent.
Therealbubba - sorry your post & question got tangled up in all this. The question you raised was controversial in the medical community until doctors were gradually won over that the T4 measurement seldom provided any better information than the TSH.
There’s an interesting history to this - in 1980, TSH assays were too insensitive to be able to distinguish between normal & low (hyperthyroid-range) values. T4s were quite easy to do, but were a little more confusing because they measured all of the thyroid hormone not just the non-protein bound fraction than can diffuse into cells. People then questioned whether TSHs were all that useful for monitoring patients.
By 1995, there had been almost a complete reversal. Labs were routinely measuring a “free” T4, which made the result more useful, but also made the test more difficult & more expensive to run. TSHs had becaome so sensitive that levels only 1% of “normal” can be distinguished from undetectable levels. With these assays, the TSH alone tells the whole story in about 95% of new patients, and in 99.9% of established patients who are checking if their thyroid hormone pill is the right strength for them. The T4 assays costs 5-10 times what a TSH level costs, and usually adds little information for your provider.
Doctors & patients have taken awhile to convince; most are rightfully suspicious of changes made for cost-efficiency. But some of these changes really do make sense, and omitting the T4 assay for most patients is one of these situations.
Please do continue asking these kind of questions - there’s a lot of medical talent on this board Most people enjoy talking about what they do & explaining things they understand well. If I didn’t enjoy explaining things, I’d sure be in the wrong job!
[[What I have consistently tried to do on this and other boards is to
answer posters’ questions with factual, impersonal type information
(e.g. Why do doctors rely on just TSH testing instead of TSH + T4) When
personal medical issues have come up, I provide some information & tell
the poster to discuss this further with their doctor(s). When needed,
sometimes I try to help focus a poster’s vague uneasiness on a couple of
specific issues that he/she can then discuss with their doctor. I freely
admit to not knowing all of the details needed to diagnose or treat
someone, and do not do this.]]
You’re right, Sue, and I really didn’t mean to attack you in this thread. I didn’t see anything wrong with your specific answer here. It was just a general issue I was bringing up, and I figgered you’d agree with me.
No harm done?