![[dr. bob]](/dr-bob-sm.gif)
Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 17 of 17. This is the beginning of the thread.
Posted by Tabitha on December 31, 2005, at 13:36:09
I just had another awful doctor visit. So I've been taking 50 mcg cytomel for about a year now. I'm not doing this under a doctor's orders, and I don't know what my blood levels were before starting. I did have an Rx for 25 mcg from my old pdoc at one point though, and started off with old medicine from that Rx.
It's really helped me a lot, with fewer side effects than any psych med. This year has just been a huge improvement in my functioning. The most remarkable change is in my energy level and my sleep patterns. I'd struggled with low daytime energy and insomnia at night leading to a night-owl pattern for most of my life. Since I've been on this med, I don't even think about 'having energy' in the daytime anymore. It's just there. And I go to sleep at a normal hour in 20 minutes or so, and sleep well. It's just miraculous to me.
Also my thinking feels sharp again. I do brain-work in my profession so this is really important to me. So many psych meds make me feel stupider.
And my hair quit falling out and the texture improved. My hair had been falling out for 5-6 years and had gotten really coarse and awful.
I don't have any hyperthyroid symptoms except a tiny bit of increased irritability. But I asked my primary care doc for bloodwork (this was 6 months ago) and my free T3 level was way higher than normal, so she told me to just quit taking the cytomel, I don't need it. Well I insisted on an endocrinology consult, and it took 6 months to get in. He told me a slight variation on the same, it's dangerous, creates risk for heart arrythmia and osteoporosis, and told me to taper down to 12.5 mcg then come back in 3 months. Three months!
And since I didn't have bloodwork beforehand, I don't know that I'm not hypothyroid to begin with, and they can't possibly tell that based on my current blood levels. So it doesn't make sense to me to cut the dose in 1/4 then not be checked for 3 months.
I asked him what about all the symptoms that were improved, he said I need another specialist for that, he only does hormones. I asked what kind of specialist would that be, he said a psychiatrist. I said how could my hair falling out be a psychiatric symptom? He said he didn't know, I should ask my primary care about it. Well I've asked every primary care doc about it, they've not referred me to any specialist. I asked my ob/gyn if it could be hormonal, she said it's most likely thyroid.
And I told him I'd been Rx'd 25 mcg from my pdoc, he said that psychiatry and endocrinology disagree on using T3. Yet he's telling me to go to a psychiatrist. It's sort of comical.
So I looked up all the old research I'd looked up before starting, and it looks to me like using 25-50 mcg for bipolar and depression isn't that unusual. And I see stuff saying the risk of heart arrythmia and osteoporosis is controversial, and some says it only applies if you're hyperthyroid for long term, and since I don't have symptoms of hyperthyroid, despite the unusual blood levels, I don't really understand whether I'm at risk or not.
He took my pulse, seemed surprised that it's a perfectly normal 72. So he said the only reason I'm 'tolerating' this med so well is that I'm fairly strong.
Oh, and I asked couldn't I be monitored for osteoporosis and heart arrythmia, but he said it was still too dangerous. And he thinks I 'probably' haven't lost bone since it's only been a year. Well I've asked my doctor for bone density scans, which has been recommended to me anyway as a normal thing for an over-40 woman to get a baseline, and my doctor says no I don't need it since I don't have risk factors. Yet he's telling me it's a risk factor, and not ordering a test.
I guess I expected that he'd check my blood levels and switch me to a T4 or a T4/T3 combo, since I know endos don't use T3 alone. But he's just telling me to drop to 1/4 dose and go away for 3 months based on my current blood level.
I had also read that if you're on a T3 drug, you're not supposed to take the med on the day of the bloodwork, so I didn't really think it was that valid of a reading. I had taken it probably 2-3 hours prior to the test.
The most bothersome thing is neither doctor is willing to consider that I might actually be hypothyroid without this medication.
Now I'm confused about what to do. I could just ignore them and keep doing my own thing. I could go to a private lab and get my own bloodwork. I could go back to the pdoc who Rxd the 25 mcg and ask for advice and monitoring. I could go to a different GP I know of who's supposed to be progressive about thyroid and hormone stuff. I could call this one back and argue some more, and ask to come back earlier than 3 months.
The only thing I don't want to do is taper down to 12.5 mcg and stay there for 3 months without any further monitoring. I just can't see how that makes sense at all. I'm pretty mad that I waited 6 months and got the 15 minutes of face time and that was the whole response.
This med has really been life-changing for me. And I guess I'm just used to the way pdocs do things, where you weigh risks and benefits, and experiment and go with what works, and then try to offset the risks. All meds have risks, right?
It's just not making sense, yet I'm pretty upset by the visit. I don't like going against doctor's orders. I really am worried about giving myself osteoporosis. And I don't like knowing that this is on my health records.
Posted by Phillipa on December 31, 2005, at 20:43:10
In reply to Endocrinology consult, posted by Tabitha on December 31, 2005, at 13:36:09
I am hypothroid and take synthroid and one of the questions on the bone density test is do you have thyroid problems. And I do have osteopenia and a little osteoporosis. Fondly, Phillipa
Posted by Tabitha on December 31, 2005, at 21:40:44
In reply to Re: Endocrinology consult » Tabitha, posted by Phillipa on December 31, 2005, at 20:43:10
Thanks Phillipa. Did they give you any treatment for the osteoporosis? And would you mind saying whether you're post-menopausal or not?
Posted by Phillipa on December 31, 2005, at 22:37:22
In reply to Re: Endocrinology consult » Phillipa, posted by Tabitha on December 31, 2005, at 21:40:44
No problem postmenopausal and they want me to take l500mg calcium magnesium, and actonel which I've so far refused because I feel with the wt i've lifted, excercise[not since moving] show be enough. And besides it hasn't been out that long so safety is an issue to me. Babblemail me anytime. Fondly, Phillipa
Posted by Larry Hoover on January 1, 2006, at 13:47:23
In reply to Endocrinology consult, posted by Tabitha on December 31, 2005, at 13:36:09
> I just had another awful doctor visit. So I've been taking 50 mcg cytomel for about a year now. I'm not doing this under a doctor's orders, and I don't know what my blood levels were before starting. I did have an Rx for 25 mcg from my old pdoc at one point though, and started off with old medicine from that Rx.
Okay, no baseline data. And, what made you consider this line of treatment?
> It's really helped me a lot, with fewer side effects than any psych med. This year has just been a huge improvement in my functioning. The most remarkable change is in my energy level and my sleep patterns. I'd struggled with low daytime energy and insomnia at night leading to a night-owl pattern for most of my life. Since I've been on this med, I don't even think about 'having energy' in the daytime anymore. It's just there. And I go to sleep at a normal hour in 20 minutes or so, and sleep well. It's just miraculous to me.
In another thread, you're claiming middle age? Doesn't sound like middle age, to me.
You've really got my attention, now.
> Also my thinking feels sharp again. I do brain-work in my profession so this is really important to me. So many psych meds make me feel stupider.
>
> And my hair quit falling out and the texture improved. My hair had been falling out for 5-6 years and had gotten really coarse and awful.I think you've discovered the Fountain of Youth. I am now rapt.
> I don't have any hyperthyroid symptoms except a tiny bit of increased irritability. But I asked my primary care doc for bloodwork (this was 6 months ago) and my free T3 level was way higher than normal, so she told me to just quit taking the cytomel, I don't need it. Well I insisted on an endocrinology consult, and it took 6 months to get in. He told me a slight variation on the same, it's dangerous, creates risk for heart arrythmia and osteoporosis, and told me to taper down to 12.5 mcg then come back in 3 months. Three months!
>
> And since I didn't have bloodwork beforehand, I don't know that I'm not hypothyroid to begin with, and they can't possibly tell that based on my current blood levels. So it doesn't make sense to me to cut the dose in 1/4 then not be checked for 3 months.Free T3 is only one measure to consider. Were other analyses made? TSH? Total T3?
I can give you the textbook reason for his response to you. Most of your T3 is circulating in your blood attached to carrier proteins. Generally, a very small amount is circulating free of this protein. Think sponges. The protein soaks up the T3, and has a varying degree of saturation. The closer this protein comes to saturation, the greater the percentage (and thus, absolute amount) of free T3. So, by inference, a high free T3 level suggests a long-term oversupply of this hormone. You're saturated. The sponges (carrier proteins) can't hold any more.
The physiological purpose of these carrier proteins is to provide a constant and stable supply of T3. They're in what's called a dynamic equilbrium with free T3. A wet sponge will dampen a dry object, but soak up free water from a wet one. Free T3 is constantly being soaked up by these carrier proteins, but it is also constantly being released.A good example of a dynamic equilibrium is people in an airport. There might be 5,000 people coming to the airport every hour. And 5,000 people leaving. Inside the terminal, there's a stable 15,000. The number stays stable (equilibrium), but the individual people constituting the assembled mass are constantly changing (dynamic).
What your doctor wants you to do is to decrease the number of people entering your airport terminal. In so many words. With constant rate of exit, the airport population will decrease, dynamically, over time.
He's assuming your thyroid transport proteins are so saturated, that it will take three months at the decreased intake level to show a significant change in free T3, and restabilization at a new equilibrium value. He's also assuming that you need *some* supplemental T3. He didn't say to stop it, entirely.
> I asked him what about all the symptoms that were improved, he said I need another specialist for that, he only does hormones.
Huh? He just does numbers? He doesn't look at response?
> I asked what kind of specialist would that be, he said a psychiatrist. I said how could my hair falling out be a psychiatric symptom? He said he didn't know, I should ask my primary care about it.
Oh, boy! I am astounded.
> Well I've asked every primary care doc about it, they've not referred me to any specialist. I asked my ob/gyn if it could be hormonal, she said it's most likely thyroid.
Wow. That's quite a runaround you're getting. Is this what happens with managed care?
> And I told him I'd been Rx'd 25 mcg from my pdoc, he said that psychiatry and endocrinology disagree on using T3. Yet he's telling me to go to a psychiatrist. It's sort of comical.
I'm glad you have that sense of detachment. I could imagine you'd not see the humour in it.
> So I looked up all the old research I'd looked up before starting, and it looks to me like using 25-50 mcg for bipolar and depression isn't that unusual. And I see stuff saying the risk of heart arrythmia and osteoporosis is controversial, and some says it only applies if you're hyperthyroid for long term, and since I don't have symptoms of hyperthyroid, despite the unusual blood levels, I don't really understand whether I'm at risk or not.
You've done your homework. You're correct. Almost. Long-term hyperthyroid, and male. I don't think you meet that latter criterion.
Statistically, you're not at risk. But you're an individual. Bone density and heart rhythm disturbance are manageable. If needed.
> He took my pulse, seemed surprised that it's a perfectly normal 72. So he said the only reason I'm 'tolerating' this med so well is that I'm fairly strong.
My goodness. He wants to ignore all the evidence that you're well.
> Oh, and I asked couldn't I be monitored for osteoporosis and heart arrythmia, but he said it was still too dangerous. And he thinks I 'probably' haven't lost bone since it's only been a year. Well I've asked my doctor for bone density scans, which has been recommended to me anyway as a normal thing for an over-40 woman to get a baseline, and my doctor says no I don't need it since I don't have risk factors.
That's managed health care, isn't it. No risk factor, no scan. I get it.
> Yet he's telling me it's a risk factor, and not ordering a test.
You have every right to feel under-treated. This borders on malpractise, IMHO.
> I guess I expected that he'd check my blood levels and switch me to a T4 or a T4/T3 combo, since I know endos don't use T3 alone. But he's just telling me to drop to 1/4 dose and go away for 3 months based on my current blood level.
He's actually giving hypothyroid some credence, inferentially, even though he won't say that to you. His behaviour is not absolutely dismissive.
> I had also read that if you're on a T3 drug, you're not supposed to take the med on the day of the bloodwork, so I didn't really think it was that valid of a reading. I had taken it probably 2-3 hours prior to the test.Excuse me? You could not have purposefully ruined that blood test any more than you did by happenstance. The test results are worthless.
The thyroid hormone enters your bloodstream unbound, i.e. free. The results of the bloodwork simply show that you just took some oral T3.
If you go to the Cytomel drug monograph, you'll see that uptake (entrance into blood) is 95% at 4 hours. You'll also see that the biological half-life is 2 1/2 days. So, to have an undisturbed picture of background thyroid function, 24 hours of abstinence might not be enough.
http://www.rxlist.com/cgi/generic3/liothyronine_cp.htm> The most bothersome thing is neither doctor is willing to consider that I might actually be hypothyroid without this medication.
You don't have evidence that they are accepting. They're ignoring your clinical response. The numbers mean nothing, if not interpreted in the context of clinical response.
> Now I'm confused about what to do. I could just ignore them and keep doing my own thing. I could go to a private lab and get my own bloodwork. I could go back to the pdoc who Rxd the 25 mcg and ask for advice and monitoring. I could go to a different GP I know of who's supposed to be progressive about thyroid and hormone stuff. I could call this one back and argue some more, and ask to come back earlier than 3 months.You need some new bloodwork. What you had six months ago, or whenever, is meaningless, because you used Cytomel just prior to the draw.
Either one of the pdoc or the hormone-friendly GP sound like good ideas. I'd lean towards the GP.
> The only thing I don't want to do is taper down to 12.5 mcg and stay there for 3 months without any further monitoring.I agree with you. Your analysis of the situation is admirable. In my opinion, you are assessing this drug in the entire context of your life. Each doctor is not doing that. They are isolating their interpretation to very limited context, and, they are all relying on bloodwork which is distorted by an uncontrolled variable. Meaningless numbers.
By the way, if you had TSH done, way back when, as part of that "flawed" bloodwork, if the number is measurable, your body is still making its own T3. In other words, the amount you're taking is not "too much".
> I just can't see how that makes sense at all. I'm pretty mad that I waited 6 months and got the 15 minutes of face time and that was the whole response.
Medical arrogance, IMHO. Some guy, with a cushy and lucrative 9-5 gig, not connecting with his patient.
> This med has really been life-changing for me. And I guess I'm just used to the way pdocs do things, where you weigh risks and benefits, and experiment and go with what works, and then try to offset the risks. All meds have risks, right?
Right. And you've accounted for those.
> It's just not making sense, yet I'm pretty upset by the visit. I don't like going against doctor's orders.
I understand that. People make mistakes. Doctors too.
> I really am worried about giving myself osteoporosis.
You're too smart to let that happen. It happens because of neglect. You'll be fine.
> And I don't like knowing that this is on my health records.
It won't matter, if you're right.
Lar
Posted by Tabitha on January 1, 2006, at 15:02:58
In reply to Re: Endocrinology consult » Tabitha, posted by Larry Hoover on January 1, 2006, at 13:47:23
Thanks for that info about protein sponges and uptake and half-life and all. That helps clarify what might have been going on with my last blood draw. He did another draw after my appointment, and I was smart enough not to take my dose that morning, so it had been at least 24 hours. I'm going to call this week and ask to discuss the results. I'm guessing it'll be way different.
He said T3 med stays in blood for 2-3 weeks. But I really think you're right that a reading 2 hours after the full dose is not valid.
So you found that heart arrythmia is only a risk for males? Am I understanding correctly?
Well with what you say about protein sponges, I wonder if maybe I am taking more than I need. I pretty much just stayed at 25 mcg for a while, then thought the initial benefit was dropping, so I went up to 50, noticed no ill effects, and decided to stay there. I'll be interested in what my new bloodwork shows. He didn't tell my my TSH level. I'm guessing it was totally suppressed. He said my free T3 reading was 'off the chart' which is why they're so alarmed.
I'm staying at the 37.5 mcg this week. I guess I'll take his advice and try reducing. Although if I start to feel worse, or get a 2nd opinion, I may stop reducing. I'm going to push for a bone density scan-- if not from the HMO bunch then I'll go thru private practice.
Oh and you asked what sent me down this path. Well I got interested a few years back, based on one of the popular books about under-treated thyroid. At that time I asked for the T3 from my pdoc. He wasn't particularly enthusiastic about it, but he did Rx it (25 mcg). I used it for about a year then, and didn't notice much from it, so I just stopped using it. But at that time I was also on Neurontin, and a different AD, and my depression was generally not as well-controlled. The Neurontin disrupted my sleep, causing somnolence (translation sleeping 10-12 hours a night) so I don't think I would have noticed the sleep improvement.
Somehow I just got interested in the idea again, as it seemed my energy level had dropped further, my hair loss thing had been going on so long, I was easily chilled, having a lot of water retention, carpal tunnel, sluggish digestion, slowly creeping weight gain, all stuff that can be thyroid. So I just decided to experiment again. In hindsight I wish I'd gone for bloodwork at that point, but for some reason I didn't. With the first 25 mcg my energy improved a lot. It's just like it flows normally through the day, yet I don't feel hyper. And I figure if I sleep well, then I'm not over-stimulated. So over the year, my life just got subtly better. It's a lot easier to keep up with stuff when your energy doesn't poop out after 3-4 hours in the day.
Posted by Larry Hoover on January 1, 2006, at 16:07:43
In reply to Re: Endocrinology consult » Larry Hoover, posted by Tabitha on January 1, 2006, at 15:02:58
> Thanks for that info about protein sponges and uptake and half-life and all. That helps clarify what might have been going on with my last blood draw. He did another draw after my appointment, and I was smart enough not to take my dose that morning, so it had been at least 24 hours. I'm going to call this week and ask to discuss the results. I'm guessing it'll be way different.
Just get the results, if you can. At least. A blood draw gives you a snapshot of a moving target. It's only accurate for the moment that is captured.
If you get the numbers, you can interpret them. You can learn how to confidently do that.
> He said T3 med stays in blood for 2-3 weeks.
But then, your own feedback mechanisms begin to respond, to recapture direct management of the ratios between all the hormones that are involved. His request to see you in 3 months might be a touch excessive, but it's in the reasonable range. If you know calculus, this is an asymptotic response curve. The longer you wait, the more closely it approaches the limit (the "perfect" measurement).
> But I really think you're right that a reading 2 hours after the full dose is not valid.
Your TSH is still meaningful. It's a response to your "T3 history", so to speak. Whatever value it is, it's the minimum stimulatory response to your body's T3 demand.
> So you found that heart arrythmia is only a risk for males? Am I understanding correctly?
No, sorry if I wasn't clear. When I looked at it, I found a gender bias in the osteoporosis data. Relative risk for women was 1.03 (a virtual irrelevance), whereas for men it was 1.86 (nearly double the background rate).
I didn't look at arrythmia risk, because your dose is too low to worry about it at all. Your free T3 level was in the risk range, I'm sure, but if and only if it stayed that way. But it doesn't, once the carrier proteins mop the stuff up.
Ideally, you'd have a trickle pump of some sort, gradually releasing the synthetic hormone into your blood. Instead, for convenience, we pop pills. So you get these concentration spikes of free T3. 25 mcg twice a day might be better than 50 all at once. Or 12.5 four times a day, better still. (Smaller spikes in concentration.) But that's not usually convenient.
> Well with what you say about protein sponges, I wonder if maybe I am taking more than I need. I pretty much just stayed at 25 mcg for a while, then thought the initial benefit was dropping, so I went up to 50, noticed no ill effects, and decided to stay there. I'll be interested in what my new bloodwork shows.
You would need to do experiments like this, no matter how you became involved in carrying them out. Titrating the dose is always a trial and error process.
> He didn't tell my my TSH level. I'm guessing it was totally suppressed.
Oh. Darn.
Even if it's "suppressed", that's an interpretation. Some doctors freak at anything less than 3.0. Others at 1.5. But, anything above zero might be okay, depending on the pattern. How it fits in with the other numbers, like total T3. Not just free T3.
> He said my free T3 reading was 'off the chart' which is why they're so alarmed.
Off the "normal" chart. It's a statistical thing. Maybe you're an outlier, one of the couple of percent of people who don't fit on the chart.
Maybe you're "off the chart" because you just swallowed some. Or maybe, off the chart for other reasons. But we don't know that. And, he's not so alarmed that he said to stop taking it altogether.
> I'm staying at the 37.5 mcg this week. I guess I'll take his advice and try reducing. Although if I start to feel worse, or get a 2nd opinion, I may stop reducing.
The best indication would be a series of blood tests. And, how you feel. You might need "high normal" values to feel normal. Or off the chart values. If you're still producing TSH, off the chart free T3 might be normal for you.
Here's the thing. There are many variables. Antithyroid antibodies (Hashimoto's thyroiditis) make blood test results for T3 virtually meaningless. You're unique, and your feeling of well-being is a critical variable. But not all doctors, even endocrinologists, give your well-being sufficient weight.
> I'm going to push for a bone density scan-- if not from the HMO bunch then I'll go thru private practice.
It's good medical practise, even without these thyroid concerns. You need baseline data. Concern shouldn't come from ignorance, from not knowing. It should flow from data.
> Oh and you asked what sent me down this path. Well I got interested a few years back, based on one of the popular books about under-treated thyroid. At that time I asked for the T3 from my pdoc. He wasn't particularly enthusiastic about it, but he did Rx it (25 mcg). I used it for about a year then, and didn't notice much from it, so I just stopped using it. But at that time I was also on Neurontin, and a different AD, and my depression was generally not as well-controlled. The Neurontin disrupted my sleep, causing somnolence (translation sleeping 10-12 hours a night) so I don't think I would have noticed the sleep improvement.
>
> Somehow I just got interested in the idea again, as it seemed my energy level had dropped further, my hair loss thing had been going on so long, I was easily chilled, having a lot of water retention, carpal tunnel, sluggish digestion, slowly creeping weight gain, all stuff that can be thyroid.Absolutely true. Classic pattern.
> So I just decided to experiment again. In hindsight I wish I'd gone for bloodwork at that point, but for some reason I didn't.
Que sera.
> With the first 25 mcg my energy improved a lot. It's just like it flows normally through the day, yet I don't feel hyper. And I figure if I sleep well, then I'm not over-stimulated.
There are other ways to measure basal metabolism, which is what thyroid hormone controls. If you obtained one of those highly sensitive thermometers that women use to determine when they're ovulating, called basal thermometers, you can chart your normal body temperature with great accuracy. Temperature is a sensitive but indirect measure of thyroid function, for example.
Hyperthyroid conditions are strongly linked to hyperpyrexia, i.e. fever. If your temp is normal....
> So over the year, my life just got subtly better. It's a lot easier to keep up with stuff when your energy doesn't poop out after 3-4 hours in the day.
That's the function of those protein sponges.....to average things out. But over time, you bumped up the average thyroid hormone exposure your body experienced. And you felt better. Which is so important, with respect to what's happening in your body, that I can't believe how your doctors are trivializing your physical response. Hyperthyroid is an illness state. You are not ill.
Lar
Posted by Phillipa on January 1, 2006, at 17:28:56
In reply to Re: Endocrinology consult » Tabitha, posted by Larry Hoover on January 1, 2006, at 16:07:43
Lar if you already know you have hasimotos throiditis and your antibody levels are high. But your TSH is 3 or below are you on the right dose of medication. That's what my doc tells me. He did a full panel plus the sntibodies. Fondly, Phillipa
Posted by Larry Hoover on January 1, 2006, at 18:35:02
In reply to Re: Endocrinology consult » Larry Hoover, posted by Phillipa on January 1, 2006, at 17:28:56
> Lar if you already know you have hasimotos throiditis and your antibody levels are high. But your TSH is 3 or below are you on the right dose of medication. That's what my doc tells me. He did a full panel plus the sntibodies. Fondly, Phillipa
Why don't you read this, and then we can talk about it some more.
http://www.thyroid-info.com/articles/woliner.htm
Lar
Posted by Phillipa on January 1, 2006, at 19:34:35
In reply to Re: Endocrinology consult » Phillipa, posted by Larry Hoover on January 1, 2006, at 18:35:02
Lar so it's saying that sythroid isn't the best? And that the lab results were skewed? I know I am highly anxious, don't need to lose wt., no energy but anxiety to always be away from the house, no concentration, many fears of being by myself and around others, and I do have osteopenia, slight osteoporosis, my mother had psoriasis, and rheumatoid arthritis as a result of it. This new doc is the head of the osteoporosis clinic in Charlotte, Nc. Robert Kipris. Was sent as a consult from internist for positive lymes Western Blot and for backpain,. He was from Yale University. And he knew all my concerns about my thyroid as my neice is monitoring her own by symtoms. He did all the blood work. So this isn't enough? Fondly, Phillipa ps I'm sweating when I wake up. Robust knee jerks.
Posted by Tabitha on January 1, 2006, at 22:41:20
In reply to Re: Endocrinology consult » Tabitha, posted by Larry Hoover on January 1, 2006, at 16:07:43
So Lar, are you saying my TSH reading would not vary as much during the day as the free T3? If that's the case I'll make the effort to get the first lab numbers also. I asked for them to be sent to me, they didn't send them, and I didn't follow up. Also I thought at some point I'd read that TSH is not meaningful when you're on T3, but I can't find that reference anymore.
Interesting link in the post to Phillipa. I couldn't quite figure out whether his advice about monitoring without bloodwork was particular to Hashimoto's patients or not.
So he also says osteoporosis isn't a risk at those dosages, yet most doctors say it is. It's confusing.
I did try a thermometer for a while-- before I started the T3, my temperature was pretty normal and seemed to vary a lot day to day (I was doing it in the morning before moving at all), so I lost interest in the method. I didn't keep it up more than a few days anyhow. Maybe I'll give it a shot again. I've read stuff saying it's a great measure, and stuff saying it's useless. Another confusing issue.
Posted by Larry Hoover on January 2, 2006, at 14:43:39
In reply to Re: Endocrinology consult » Larry Hoover, posted by Phillipa on January 1, 2006, at 19:34:35
> Lar so it's saying that sythroid isn't the best? And that the lab results were skewed? I know I am highly anxious, don't need to lose wt., no energy but anxiety to always be away from the house, no concentration, many fears of being by myself and around others, and I do have osteopenia, slight osteoporosis, my mother had psoriasis, and rheumatoid arthritis as a result of it. This new doc is the head of the osteoporosis clinic in Charlotte, Nc. Robert Kipris. Was sent as a consult from internist for positive lymes Western Blot and for backpain,. He was from Yale University. And he knew all my concerns about my thyroid as my neice is monitoring her own by symtoms. He did all the blood work. So this isn't enough? Fondly, Phillipa ps I'm sweating when I wake up. Robust knee jerks.
What I hoped you'd focus on is this paragraph, from that link:
"“These blood tests – they don’t work for you. They didn’t help you over the last 15 years you’ve been having problems, even when your problems became worse over the last two. It is because these thyroid antibodies variably bind up the hormones you have. There is no way to tell how much thyroid hormone you need based upon blood tests.” "
Now, that applies only to Hashimoto's. You have to look to secondary measures of thyroid function. What the doctor in that article suggested was a two-pronged strategy. One, to measure basal temperature. Two, to assess various aspects of well-being on paper, using ten different 10-point scales of various factors including weight, skin, mood, energy, etc.
In other words, the only way to assess thyroid level in Hashimoto's is how the patient feels.
That is not the sort of medical management you are likely to find, however. "Standard wisdom", old school doctors still rely on blood tests, even in Hashimoto's. I'm not saying they're wrong, necessarily. But I've talked to a lot of Hashimoto's people over the years, and every one of them says that they think their doctor has them on the wrong amount of hormone. And here's a thyroid specialist giving a good explanation of why he thinks the "old school" is mistaken.
From looking at your list, though, you do sound more hyperthyroid than hypo. How much Synthroid do you take?
The doctor also makes another critical comment about the form of thyroid supplement given. You mention Synthroid, which is the hormone T4. He recommends Armour, which is purified standardized pig thyroid, which includes a balance of T3 with T4 (and maybe other essential thyroid stuff....more like an herb). Pure T3 is Cytomel.
So, you may do much better just changing the form of hormone you take, without even adjusting the dose. Hashimoto's can interfere with the conversion of T4 to T3. By getting some T3 orally, you might do better.
Or, maybe you're mineral deficient. The doctor speaks to that in the article. Mineral deficiency masquerades as thyroid problems, for some people. Selenium and zinc deficiency, specifically. One of the effects is poor T4 to T3 conversion.
Lar
Posted by Larry Hoover on January 2, 2006, at 15:04:22
In reply to Re: Endocrinology consult » Larry Hoover, posted by Tabitha on January 1, 2006, at 22:41:20
> So Lar, are you saying my TSH reading would not vary as much during the day as the free T3? If that's the case I'll make the effort to get the first lab numbers also. I asked for them to be sent to me, they didn't send them, and I didn't follow up.
I think there is still meaning in that value, whatever it is. I do not believe that TSH changes rapidly in response to e.g. an oral dose of T3. TSH is T3 sensitive, but I don't believe it is rapid.
> Also I thought at some point I'd read that TSH is not meaningful when you're on T3, but I can't find that reference anymore.
Over time, your body does respond to those surges in *free* T3 caused by oral dosing. The TSH value loses meaning in the sense of being accurate feedback, but, it still has meaning. Your TSH will likely be "out of range", but it shouldn't be zero.
> Interesting link in the post to Phillipa. I couldn't quite figure out whether his advice about monitoring without bloodwork was particular to Hashimoto's patients or not.
In my opinion, it should be part of any thyroid-replacement treatment program. The secondary measures. Your bloodwork will still be meaningful, if you don't have Hashimoto's. The secondary measures help to individualize treatment. It's not enough to just be in the normal range of hormone concentration. You may need more than most people do, to really feel well.
Statistics don't apply to individuals. Somebody (a whole bunch of somebodies), was on the high side of normal when they developed the normal ranges, right? So, how do we determine if you're a low normal, midrange normal, or high normal somebody? Secondary measures.
Statistically, there are also normal people who are "off the chart" high. Even doctors sometimes forget simple statistical principles.
> So he also says osteoporosis isn't a risk at those dosages, yet most doctors say it is. It's confusing.Ya, it's confusing. I think that the confusion arose because they just lumped all thyroid-replacement (hypo) patients in together. What I discovered was that it seems that hyperthyroid patients who received RAI (radioactive iodine) ablation, to destroy thyroid tissue, were the ones who skew the bone density values. They're artificially hypo, and I think that makes a difference.
Hey, the geek in me is coming out. I'll take another look at it.
> I did try a thermometer for a while-- before I started the T3, my temperature was pretty normal and seemed to vary a lot day to day (I was doing it in the morning before moving at all), so I lost interest in the method. I didn't keep it up more than a few days anyhow. Maybe I'll give it a shot again. I've read stuff saying it's a great measure, and stuff saying it's useless. Another confusing issue.Ya. Some mornings I wake up hot, because I piled too many blankets on myself while I slept. Or cold, because I kicked them off. I think it's the trend (the average?, or best line on a graph?) that gives the useful information.
If you do it religiously for a period of time (two menstrual cycles, say), I think you'll have your answer, for yourself.
I am speaking about other people's experiences. I admit straight out that I don't know what it's like. Other than a short trial of T4, where I was accidentally given 10 times the dose I should have been on. I felt *so* bad. If that's hyperthyroid, you can have it. I have never used T3.
Lar
Posted by Phillipa on January 2, 2006, at 17:41:57
In reply to Re: Endocrinology consult » Tabitha, posted by Larry Hoover on January 2, 2006, at 15:04:22
Lar I take 0.125mcg of synthroid. I took a lower dose at first but my TSH went up to 22. The anxiety was so bad they hospitalized me for the first time. They didn't yet know about the TSH but after raising the dose I was more anxious and the endocrinologist said boy you sure are senstive to changes. So they upped my ativan that I was on at the time. And at that time I was still mensturating. Now I'm postmenopausal does that make a difference. Fondly, Phillipa
Posted by Tabitha on January 13, 2006, at 23:07:11
In reply to Re: Endocrinology consult » Larry Hoover, posted by Phillipa on January 2, 2006, at 17:41:57
My pdoc gave me Provigil as an alternative to the thyroid med. He said he wasn't up on the research enough to Rx thyroid for me. It's odd because he gave me the Cytomel 25 mcg in the first place. But he seemed enthusiastic about Provigil.
I guess I'll try it, although it seems like it doesn't address the whole spectrum of things that thyroid does. But he did say it's not supposed to cause bone loss and heart trouble, but then I wonder how much long-term safety data there is on it, since it's fairly new.
Posted by Larry Hoover on February 6, 2006, at 12:22:37
In reply to Re: Endocrinology consult » Larry Hoover, posted by Phillipa on January 2, 2006, at 17:41:57
> Lar I take 0.125mcg of synthroid. I took a lower dose at first but my TSH went up to 22. The anxiety was so bad they hospitalized me for the first time. They didn't yet know about the TSH but after raising the dose I was more anxious and the endocrinologist said boy you sure are senstive to changes. So they upped my ativan that I was on at the time. And at that time I was still mensturating. Now I'm postmenopausal does that make a difference. Fondly, Phillipa
Have you tried magnesium supps? Taurine? Niacinamide? You may be able to make ativan work better, by increasing the GABA receptor sensitivity with supplements.
What is your TSH level now? Total T3? Getting blocked, I feel like I've lost track of what was going on.
Lar
Posted by Phillipa on February 6, 2006, at 18:51:12
In reply to Re: Endocrinology consult » Phillipa, posted by Larry Hoover on February 6, 2006, at 12:22:37
Lar, Yup now I forgot. Just was told it was normal by the doc I said that between 1-3 TSH was normal. I take Tauring, Gaba, Ester C,natural plant source MVI for women, Omega 3,B complex 5omg x 2. Ca and Mg and mg citrate. I'll guess I'll bet my husband to look up my labs again but he won't do it now. He's on his laptop yup the one.Not here of course. Will have to get back to you on the actual numbers. Bet you've been busy catching up!!! Love Phillipa
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