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Under den horisontale linjen: fra General / Hypothyroidism/Hashi - Dr. says T3 has made TSH unreliable!!!
mary shomon forum

January 25, 2002
Question: I had my thyroid burned out with radioactive iodine treatment 15 years ago. As a result I’ve been hypothyroid since. Before Sept. 2001, I was on 0.20 mg [200 mcg] of Levoxyl [a brand of T4]. I felt generally fine. Also, to my delight, I lost 35lbs over the past year and a half. But that changed in Oct. 2001. In Sept 2001, I went to my general physician. He did my annual TSH test. Because of the result, he lowered my dose to 0.15 mg [150 mcg] Levoxyl daily. About a month later, I started gaining weight despite watching and counting my calories every day, and exercising at least 30 minutes a day. I also became increasing sensitive to cold, which I never had a problem with before. I started taking my temperature at different times of the day for the past few weeks, and no matter when I take my temperature, it has been below or at 97 degrees. I have become more irritable, have no libido, have almost daily headaches, and am starting to experience a small amount of hair loss. I called my doctor and went in for another blood test three weeks ago. He tested my TSH again, and because of the result, he lowered my Levoxyl even lower, to 0.125 mg [125 mcg] per day.
I am going to an endocrinologist for the first time in 15 years on Friday to discuss my continuing symptoms of hypothyroid. My question comes here. I had my doctor's office fax my blood test result to me, and I’m very perplexed. The normal range for the TSH my doctor looks at is 0.49-to-4.67. My last two blood tests read less than 0.03. Now, I had my thyroid burned out, so why would my TSH reading be so low, indicating that my thyroid is producing enough hormone. I’m so confused and upset by this and really need some answers. I know I’m going to a specialist in a couple days, but I’d like to go to my appointment armed with as much knowledge as possible. Could it be that my pituitary gland is not functioning properly? I truly appreciate your input.
Dr Lowe: Your observations don’t suggest to me that your pituitary gland isn’t functioning properly. In fact, your observations are consistent with what science tells us about a patient's T4 dose, her TSH level, and her metabolic health or lack of it. If the goal of a doctor is metabolic health for his patient, he has no scientific basis for adjusting her thyroid hormone dose by her TSH level. If the doctor is going to make the imprudent choice of treating the patient with T4 (rather than T3 or a T3/T4 combination), he should be aware of the relevant physiology and treat her on the basis of it. Otherwise, he's likely to ruin her health, as your doctor appears to be doing to yours.
The TSH level is not well synchronized with the tissue metabolic rate. (Probably most doctors falsely assume that studies have shown that the TSH and metabolic rate are synchronized. But despite my diligently searching for years for such studies, I’ve yet to find them.) Adjusting the T4 dose by the TSH level is like adjusting the speed of your car by a speedometer that's out of synchrony with the actual speed of the car. Adjusting the speed of a car by an out-of-sync speedometer, of course, will get the driver into trouble—either with other drivers who'll object to the car traveling too slowly, or with a police officer who'll object to the car going too fast. And adjusting the thyroid hormone dose by the TSH level gets most patients in trouble—almost always because their tissue metabolism is so slow that they are sick.
The main enzyme complex that converts T4 to T3 in the pituitary gland is type II 5'-deiodinase. This enzyme complex is usually highly effective in generating T3. It’s generally more effective than the main enzyme complex (type I 5'-deiodinase) that converts T4 to T3 in other body tissues.[1,p134] As a result, the pituitary gland produces T3 more readily than other tissues do, and this pituitary T3 effectively suppresses the synthesis and secretion of TSH. Some researchers have reported that as little as 0.145 mg (145 mcg) of T4 suppresses TSH secretion.[2] It takes little cognizance in clinical practice to realize that this dose rarely is enough to keep a patient's metabolism normal. And rarely is this dose enough to free a patient from symptoms of abnormally slow metabolism. If patients are going to have normal tissue metabolism and good metabolic health while using T4, most of them must take a dose that suppresses the TSH level. It’s this fact that mainstream doctors need to come to understand, if they’re going to stop keeping their hypothyroid patients ill.
When the typical patient’s T4 dose becomes just high enough to produce enough T3 in the pituitary to suppresses the TSH, T3 production in other tissues will be inadequate to keep their metabolism normal. As a result, the person's tissue metabolism will be slow, and she'll suffer from symptoms of too little thyroid hormone regulation. The net effect of all this is that the TSH is effectively suppressed by a T4 dose that is inadequate for keeping the metabolism of other tissues normal.[1,p.990]
I suspect, then, that the problem in your case is that you're being treated with T4—the poorest choice of thyroid hormone preparations. I can understand why most mainstream doctors don't understand this matter. It’s complex, and, because of that, they tend to simply accept the opinions of conventional endocrinologists. What utterly baffles me is why conventional endocrinologists don't understand it.
Reference [1] Lowe, J.C.: The Metabolic Treatment of Fibromyalgia. Boulder, McDowell Publishing Co., 2000.
[2] Korsic, M., Cvijetic, S., Dekanic-Ozegovic, D., Bolanca, S., and Kozic, B.: Bone mineral density in patients on long-term therapy with levothyroxine. Lijec Vjesn, 120(5):103-105, 1998



Hello fellow hypos, I am asking for some advice. Please bear with the details and help me understand. Is my doctor trying to switch me to T4 only because T3 is so controversial? Or does T3 really affect the reliability of your TSH??? Essentially, I have an amazing internal medicine doctor who embraces both allopathic and alternative medicine. As a result, she has been willing to work with me on proper T4/T3 ratios, every 6 week testing, even switching to a time released T4/T3 formula from a compound pharmacy. Only trouble thyroid levels are all screwed up. At first, we had found a dose of levoxyl and armour that kept me euthyroid. Then, slowly but surely my free levels of T4 and T3 started to drop. Same doses but falling free thyroid levels. In addition, my TSH began to drop of the charts as oversupressed! Yet my free thyroid levels were dropping too, huh?
My doctor and I theorized that perhaps I was developing antibodies to the pig thyroid in Armour and I wasn't absorbing or utilizing it as well as before. So, we went to Belmar (compound pharmacist used by Dr. Vliet) and figured out a good conversion of T4 and T3 dosage from levoxyl/armour to the compound formula. And because it seemed my T4 levels had dropped more significantly, the T4 portion was increased some. Well...once I switched to the compound formula, every kind of hypothyroid symptom followed! At the six week labs after switching, my free thyroid levels were in the basement! Very low AND my TSH was still oversupressed! I was very concerned as to why my TSH wasn't inverse to my free thyroid levels. It's supposed to be high TSH/low free thyroid levels...low TSH/high free thyroid levels. Mine wasn't and I was concerned. I even got my doctor to write for an MRI to make sure it wasn't a pituitary problem - totally normal.
Essentially, my doctor said they obviously undershot on the thyroid dose when they converted and go ahead and increase the dose. I called the pharmacy and he agreed and said he had no reason to believe it was a product problem as he as a lot of patients on this formula. Go ahead and increase. As for the corresponding TSH, my internist had no idea. We just decided my TSH doesn't accurately reflect my free circulating thyroid levels.
So, I decided I'd gotten in over my head. I made an appointment with two new endocrinologists. The first one was just horrible. Bad experience. However, I got my pat answer as to why my TSH was so off. She said that supplementing with T3 can confuse the brain and consequently the TSH result which is their way of asking the brain how much it needs. She said it takes the brain a very long time to get accustomed to any given thyroid supplementation and I was switching too soon. Also, she said that I was overtreated. I showed her that even though my TSH was oversuppressed that my free levels were super low. And I had very bad hypo symptoms still? Why wasn't it an inverse relationship low TSH is supposed to be with high free levels??? She told me I needed to be patient, that the brain takes its time and that I needed to switch to a T4 only and reduce the dosage.
My second appt. with a new endocrinologist went much better. She was very good. She said she could see why my internist had tested what she had, prescribed what she did, and what the goal was. She commented my doctor was trying anything to get me to feel better.
She also said I was overtreated. Even still, she said she wouldn't want to switch me to a lower dose automatically because I would probably experience a big drop and serious lows.
She said that she's not against supplementing with T3. She said some of her patients do take it. However, she said we don't even know if you need T3. The doctors immediately started with T3 added and that tends to make the TSH very unreliable. Essentially, the doctors can use the TSH as a pretty specific tool to predict thyroid function when only T4 is supplemented. When you supplement with T3, it makes the TSH an unreliable measure so it's harder to manage. Hence, the overshooting and undershooting of all of the last year that has made me crazy.
So, she opted to put me on a high dose of levoxyl to equal the combination formulas I had been on and said we'd retest in six weeks. Then we would adjust down incrementally until I was alright. She said I would probably feel like crap for about 3 months as we got this under control but to bear with her. Essentially, cleaning up the treatment so that she can use the TSH as an accurate measure to manage my hashimoto's.
To be perfectly frank, I felt super guilty because I'm the one that pushed my internist to add T3. I'm the one that asked for my doses to be changed. Mostly, I had gathered from all of the info on this website and books that that was the way to go. And to be wary against doctors who aren't interested in the whole patient, etc. However, no one really talks about the use of T3 affecting the accuracy of the TSH. The only reference I saw to this was in the articles as to why doctors don't like to use T3 because it makes managing the patient difficult.
Anyone have any opinions on what my doctor said? I'm leaning towards believing her and going solely T4 because she seems to have a reasonable explanation about the TSH being low despite low free levels. HELP?
Tonia --------------------------------------------------------------------------------- Jan-27 5:13 pm I am having a similar set of problems. I want to know too! Please let me know what you find out and how you are doing. Lori ---------------------------------------------------------------------------------- Jan-27 5:34 pm Tonia, Hi! I am not sure how to answer your question. However, I was dxed with hypo 2 years ago. This past Nov. my PCP did an ultrasound of my thyroid. He referred me to an Endo, who dxed me as having thyroiditis (probably Hashis). He suggested a t3/t4 combo-Thyrolar. I just went for my bloodtest 2 weeks ago. The only thing that was checked was my TSH. It went from 5.25 in Nov. on Levoxyl .88 (t4 med) to 7.15 on the Thyrolar 1. So, I guess that kinda blows the idea that the t3/t4 makes your TSH suppressed,huh? The only thing I know is that I never had a t3/t4 until I was dxed as Hashis. The t4 did nothing for me.There was quite a spell when I felt like a walking zombie. I do notice with the Thyrolar that some of my symptoms have gone away and others are better. I do know that there are certain times when the Hashis flares up and am wondering if that is what your experiencing. Stress can cause it to flare as can other things, like diet,any illness like a cold etc., vitamins and supplements. Also the weather, time of year, can affect the TSH. It seems that the TSH goes higher in the winter, I don't know why. If your doctor is right, then why do other drs. continue to use the TSH test when prescribing t3/t4 meds? I would ask about that. I hope this helps in some small way. Glenna -------------------------------------------------------------------------------- Jan-27 5:47 pm Hi, Tonia. I tend to ageree more with the internist's treatment than with the Endo. I know your TSH is low, but this is not unusual when you are supplementing with a T3/T4 combo. Here's an interesting article that talks about TSH and its unreliability. It is written to address hypERthyroidism, but applies to hypos who are taking meds, too. The article ends with this statement: ...while TSH remains an accurate test for diagnosing hypothyroidism or hyperthyroidism, it is not the perfect test that it was once assumed to be. Levels of thyroid hormone, T4 or FT4 and T3 or FT3, are better indicators of thyroid function. What is happening, in my opinion, speaking from my personal struggles and reading, is that as you supplement with more and more thyroid meds, your TSH drops, therefore your thyroid, which is still functioning some, produces less and less. The thyroid meds are suppressing your TSH, and, in so doing, are also lowering your Free T3 and Free T4 because your own thyroid is slowing down its production. Once your TSH gets to a certain point that is optimal for you, (for me it has to stay less than .01) you will quit fluctuating up and down and you can really get your T3 and T4 levels optimized. It takes time, but it is worth it to work through it. To me, it sounds like the endo isn't truly educated on thyroid treatment. She stated that "we don't even know if you need T3." That bothers me and threw up a red flag. Was she referring to you, or to people in general? Either way, I don't like that statement. If you didn't need T3, your thyroid gland would not produce it and the other tissues in your body would not convert T4 to T3. Read Gail's thyroid tips here--specifically the section on Thyroid Medications and Hormones: She and her husband have gathered some great information and have backed it up by citing research papers and such.
My advice: Go back to your internist, go back on Armour and Levoxyl, and be patient. Make small adjustments to your meds as needed. Making big adjustments can cause some strange things to happen, and the results are not always waht you would expect. Don't worry about the TSH being low as long as your Free T3 and Free T4 are both in range. Danny (The Colony, Texas) ---------------------------------------------------------------------------------- Jan-27 5:55 pm I don't really have an answer but I am wondering why the doctors are relying so much on the TSH? It's not even that good as a diagnostic tool so I can't understand why it would be good to use it to manage thyroid treatment. I'll be interested in the responses you get. Jayjas ---------------------------------------------------------------------------------- Jan-27 6:42 pm Hi, Girl! I feel an attack of psychoproctology coming on already and I haven't even started my response to your post. I will reserve my comments about your docs for a separate post. See post 31267.1 . When I went to a doc who really understands thyroid, he not only ran a Free T3, Free T4 and TSH, but he also ordered a Total T3. My TSH has been suppressed for years and it still was on this day. I had finally gotten my Free T3 up to the 70th percentile of the range. But my Total T3 was at 111% of the range.
He told me that what this meant was that most of my T3 was bound to proteins in my blood. (This can be from hormones, but in my case we know it is because I take my Armour with food, including milk products. ) I have had no hyper symptoms, but the bound as well as the free T3 can suppress the TSH. I hope someone has directed you to the link about Dr. Christian Meier's talk on the limitations of TSH once thyroid treatment has begun. They can take away my Armour when they pry it from my cold, dead fingers! Oink! Oink! endophobia! North Texas Thyroid Support Groups Texas Thyroid Support Groups -------------------------------------------------------------------------------- Jan-27 7:40 pm I don't have a current PDR at home, or I'd verify the statement I'm about to make. I think the prescribing information (the stuff in the PDR) for Synthroid (and probably the other T4s) says that after the initiation of T4 replacement that the TSH is not a valid measure of the status of thyroid disease. Don't know why they even use it after you start taking the pills. Can someone check on it? I don't have a PDR at my new job, so I can't even check tomorrow. MaryH. NYC ---------------------------------------------------------------------------------- Jan-27 7:53 pm Mary: If you have adobe acrobate reader you can get the synthroid prescribing info at 'nette, Colorado, USA, Planet Earth Patients talking with patients. Things to think about only, not medical advice! ------------------------------------------------------------------------------------- Jan-27 8:12 pm Hi Tonia -- I am very interested in your thread as I have had about the same circumstance. My Free T3 is still low(2.6), my Free T4(.70) is still low and my TSH is the lowest it has ever been(.06). I am getting the "overmedicated" answer too even though I am decidely hypo/symptom-wise. I, too, think the doc makes sense when explaining the chemistry, but -- how then do I get my T3 and T4 up at least somewhere close to the middle of the range? It obviously would take more than the 2 grains of Armour I have been taking and it would obviously end up with a fully suppressed thyroid gland. Is that the answer for the stubborn glands? Just bypass them with meds? I am not sure. Looks like I will get to throw the towel in on this problem and exchange it for another as I am to get my thyroid out soon. So, I won't argue the theory with my doc just yet. Will wait and see what new adventure I end up with. Wish you good luck in solving your enigma! Debra (in sunny Florida) ------------------------------------------------------------------------------------ Jan-27 9:59 pm This is very interesting to me too...I am Graves, post Rai 2yrs. Healthcheck results: TSH-0.01; FT3-2.9; FT4-0.9....2grains Armour for 8 months. I really do not think that I am hyper, (don't know what I am!) Primary complaint is fatigue/total exhaustion mid-day.2 hour nap is an absolute MUST.....did I say nap? I go into deep sleep, dreams/nightmares, drooling...almost comatose! I go to a new doc on Tuesday (endo) and hope he will be able to sift through my labs and give positive input.I really do not want to go back to T4 meds....I won't go back to T4 only. Please, don't remind me that in my profile I say "Never say Never!" -Pat ------------------------------------------------------------------------------------ Jan-27 11:47 pm Debra, Yes, yes, yes! Exactly - how do I get my thyroid levels up in the 70% normal range if I am supposedly overmedicated because my TSH is oversupressed??? I too was on a high dose of thyroid replacement so it makes sense that I was taking too much...except for those darn persistent hypo symptoms! You bring up an excellent point. The issue of replacement supressing the gland's natural function. This part of endocrinology has always confused me. How exactly can one dose of hormone replacement ever be correct when the minute you start supplementing your body starts responding by producing less? Throw in Hashi antibodies and I'm overwhelmed by the complexity of the whole thing. In response to the other posts regarding T3, I do agree that sometimes T3 is needed. However, if your body is correctly converting T4 to T3 then I can see why T3 replacement is on an as needed basis. I don't take offense to my endo saying that it hasn't been established as to whether or not I need T3. It's not an issue of T3 being bad (at least I don't think)'s more whether or not the converting process is accurate in YOUR body. Yes...our thyroid gland produces many different thyroid products. However, I think I'm a perfect example of how natural replacement may not work for everyone. Dr. Vliet validated my concerns when she talked about animal hormone and the human's response to it. In her most recent book, she discussed how when insulin was derived from horses and used in diabetics, the rampant antibody production in humans. Extrapolating this result to animal thyroid, perhaps some people develop antibodies to animal replacement. This seems like the only explanation for my dropping thyroid levels while my Armour/Levoxyl dose stayed the same. Or perhaps I have an absorption issue. However, I was euthyroid for a short time and then the levels started dropping.
Debra, my other thought was that possibly our interpretation of persistent hypo symptoms may very well be hyper symptoms. Following our dr.'s "overmedicated" theory, we would be experiencing hyper symptoms which mimic hypo in many situations. My doctor had me hold my hand out and see if I shook...I did a little and she said, "That's too much thyroid!" I said, "But, I still get so cold and have fatigue..." Then she checked my reflexes and she said they certainly weren't hyper in fact they were a little slow or absent. Then, she said that some people do need a high dose of thyroid. Only time will tell. So, she switched me to Levoxyl. Thank you so much for your feedback. It helps to know that others have experienced the same funny labs. This site is so great about supporting people to ask for treatment (i.e. proper labs, T3, etc.) however I haven't seen many people talk about what happens when you do get the doctor to listen to you, treat you as you've requested and then get this kind of result. I can't thank you enough. Tonia --------------------------------------------------------------------------------------- Jan-28 12:05 am This is an unbiased website to review tests. Maybe your answer is there. Sidney EDIT: I forgot to mention, if you are taking Armour before the test, Forest recommends you take your meds after the test. The t3 affects the test. from "For more information about Armour® Thyroid, or for medical questions regarding our products, call our Professional Affairs department toll free at 1-800-678-1605, ext. 7301." I have talked with "Dennis Wentzel, MS, Rph" and he is the best!! also check out Mary's site about TSH fluctuating. Sidney -------------------------------------------------------------------------------- Jan-28 1:20 am OK--this is pure speculation, I repeat, I am not a doctor and I don't play one on TV, but I have been researching this because it fits my own symptoms, so you might want to look into it. I don't have my own copy of Dr. Jeffries book Safe Uses of Cortisol, but if you go to this message 30883.27, you'll find an excerpt from it entitled Hypothyroidism With High Circulating T3. It was transcribed and so it's slightly garbled in one place, but it's pretty interesting. Basically, get ready to consider the role of the adrenal glands. Another one of your responders gave you the link to Gail's thyroid page I believe--if not let me know and I'll post it--and I really recommend taking a look at it. Among many other things, she explains that adrenal function is supposed to be tested even before thyroid function is tested--and I haven't checked this myself but I believe she says that even the Synthroid package insert says that proper adrenal function should be confirmed before thyroid hormone is ever administered--basically, that adrenal fatigue and thyroid hormone are contraindicated.
Why it is that doctors don't do this I do not know. It seems to be completely lost in the shuffle, and the more I read about it the more important it seems. Any doctor will say that the endocrine system is a highly complex and interdependent system, but it's a rare one indeed who treats it that way.
What I find interesting about the excerpt from the Jeffries book is this notion of T4/T3 resistance--and, as Endophobia pointed out in her post to you, if you haven't had your Total T3/T4 measured, you don't know how high they are. If they're way high, then what you've got is a lot of T3/T4 in your system knocking your TSH level down way low, but your system, for whatever reason, isn't being able to metabolise the thyroid hormone. Only a small portion of it--the "free" portion--is even available. The rest of it is bound to proteins, but your pituitary gland knows it's there, so is slams the brakes on the TSH. To me, the reason for why this happens isn't as important as the fact that Jeffries was able to
resolve it with low doses of cortisol. The final result being that the dosage of thyroid hormone can be reduced because it's no longer being resisted.
I won't try to dump everything I've gleaned about the way the thyroid depends on the adrenals, but I will say that I've found a lot of answers to why my own symptoms don't seem to be resolving on thyroid hormone alone. I will also say that if depression has ever been one of your symptoms, you might want to be prepared to see that one get worse without any T3. I repeat, I am not a doctor and I don't play one on TV. I'm just saying it from personal experience, and also because T3 is still prescribed as an antidepressant and was the grandfather of all antidepressants. So your doctor who's preparing you to feel bad for three months ain't lying.
For me, it has been worth looking into adrenal gland function, and while I'm still waiting to hear the results of my saliva test, I intend to insist on trying this low cortisol therapy even if my test results come back normal. My doctor diagnosed my hypothyroidism based on a TSH level that no other doctor would pay attention to, so I'm counting on him to have a good eye for my adrenal fatigue too. Anyway, here's another link you might find interesting: Fatigue1 (forum) I hope you're getting all the food for thought you were hoping for! Sandy -------------------------------------------------------------------------------------- Jan-28 2:26 am Hi.. From my PDR.. Synthroid: " Clearly it is the physician's judgement of the severity of the disease and close observation of patient response which determines the range of dosage titration. Laboratory tests used to monitor thyroid replacement are of limited value. In all cases, clinical impression of the well-being of the patient takes precedence over laboratory determination, in determining the appropriate individual dosage. " verbatim quote from PDR/Synthroid/Prescribing Information ------------------------------------------------------------------------------------------- Jan-28 2:40 am Dear Steppin': Wow, can I have that bronzed?? Thanks for finding that citation. Best, Dottye (NYC/USA) Volunteer Board Host ------------------------------------------------------------------------------------ Jan-28 2:46 am "I haven't seen many people talk about what happens when you do get the doctor to listen to you, treat you as you've requested and then get this kind of result. " Mark me down as one of those. My doctor has listened every step of the way, and in fact puts the choice of what meds at what doseages I take in my hands. In order for my Free T3 and Free T4 to be anywhere at or above the middle of the reference ranges requires my TSH to be less than .01.
Is T3 suppressing my TSH, perhaps, perhaps not. In September, on 2 grains of Armour and .050 Unithroid, My Free T4 was at 1.4 (range .8-1.8) and my Free T3 was below the middle of the range. (I can't recall the numbers and don't have them handy.) My TSH was STILL less than .01, despite the relatively low T3 reading.
I respect and admire her work, but I am not sure I agree with Vliet's statement about antibodies to the dessicated thyroid products. If you already have antibodies, then they will attack the thyroid binding proteins that they normally attack regardless of whether you are taking a natural or a synthetic product. Perhaps there is something in the dessicated products that increases the antibody count, but I am not sure I buy that, either. As 'Nette says, "Show me the numbers."
"Exactly - how do I get my thyroid levels up in the 70% normal range if I am supposedly overmedicated because my TSH is oversupressed??? "
Another personal theory of mine, that I have seen shared by others, including Dr Teitlebaum, the author of From Fatigued to Fantastic: Your body has been used to a fairly low level of thyroid hormone for a long period of time. When this happens, ALL tissues, including the hypothalamus are slowed down and do not respond properly to stimuli that they should. At this point in time your hypothalamus is still trying to keep an even keel at the lower level of thyroid hormone that it is used to, or it can't produce enough TRH to stmulate the pituitary properly any more. Either way, if the hypothalamyus doesn't produce enough TRH to stimulate the pituitary gland into producing enough TSH, then the result is a low TSH, no matter what you do, thus the reason your TSH is low, even though you have less than optimal levels of those hormones in your blood.
In a case like this, even the thyroid med manufacturers state that you should IGNORE TSH test and go by Free T4 (Savvy doctors will also monitor Free T3 to keep both levels in balance with each other). Here's a quote from Synthroid's prescription insert on that subject:
Adequacy of levothyroxine sodium therapy for hypothyroidism of pituitary or hypothalamic origin should be assessed by measuring free T4, which should be maintained in the upper half of the normal range. Measurement of TSH is not a reliable indicator of response to therapy for this condition.
I hope this clarifies why I can't agree with your endo. Danny (The Colony, Texas)
-------------------------------------------------------------------------------- Jan-28 2:59 am Sandy, "if you haven't had your Total T3/T4 measured, you don't know how high they are. If they're way high, then what you've got is a lot of T3/T4 in your system knocking your TSH level down way low, but your system, for whatever reason, isn't being able to metabolise the thyroid hormone. Only a small portion of it--the "free" portion--is even available. The rest of it is bound to proteins, but your pituitary gland knows it's there, so is slams the brakes on the TSH."
This is a very interesting observation. I guess from everything I've read, free levels are what's focused on as that is what's available for your body to use. And that the total numbers are useless. However, what you've pointed out, it makes sense to test totals as well.
As for the adrenal issue, I actually have researched that subject a great deal because when I was first diagnosed with Hashi's and treated with Synthroid, I got a lot of crazy side effects or so I thought. I actually have Dr. Jeffries' book, used to check out the fatigue1 website A LOT and have a rx of Cortef if I want to take it. Essentially, they did every test, 24 h urine cortisol, cort stim test in the hospital, fasting cortisol repeatedly. My adrenal function is fine. My cortisol levels tend to fluctuate based on a number of different factors. It turned out I had a number of other things going on undiagnosed (sleep apnea, pcos, a viral syndrome, stress).
My growth hormone, dhea and cortisol are in the normal range. Cortisol is sometimes really normal and other times low by Dr. Jeffrie's standards. My DHEA is normal - on the low side of normal. My growth hormone is low normal and they can't prescribe gh without running a zillion tests. So, I even tried taking arginine (the precursor) to growth hormone and dhea supplements. Did nothing to change my labs. Every time I theorize it's my cortisol levels they tend to be normal. So, for me, the reason my brain has put the brakes on my thyroid can't be ruled out as adrenal unfortunately. I think I'm going to go back to my internist, humbly, tell her I was concerned after my last labs and consulted with a specialist and convey her opinions. I trust my internist enough to know that she'll be happy for the input. And then, I'll ask her to run my total levels as well. Thanks for your input. I really appreciate it. Tonia ----------------------------------------------------------------------------------- Jan-28 4:08 am Tonia-- Glad I had something to contribute. What Danny says about the TRH involvement could also pertain. I was noticing various places in the Synthroid insert where it said that TSH levels couldn't be relied upon. So it sounds like you've been down the adrenal road--I do notice one thing though, and I may be challenged to find the link for you, but you say that you've also got PCOS? Well, according to the research I've done, PCOS is attributable to adrenal fatigue. The reason this makes sense (to me anyway) is that DHEA is the precursor to the sex hormones. You say that your cortisol and DHEA test low normal--maybe for you, since these ranges are, after all, arbitrary, and not necessarily hard and fast for all of us, maybe for you, low normal is too low.
I've just looked for the link for you and can't find it--which will really drive me nuts because I can see the stuff I read just this weekend about it. But it sounds like you've done lots of research on it yourself. All I can say is that if I were you, I wouldn't do anything else until I'd tried the Cortef. And I'd quit using the labs as the last word. I panicked about my TSH levels dropping way low, but not only did my doctor wave it off, I'm also now finding out that they really have practically nothing to do with it--the TSH levels--once you'r taking the meds--and they're only vaguely helpful as a diagnostic tool if you're somebody like me who was very subclinical but with raging hypo symptoms. So that might be good info for you too. My TSH level last November was .03 and my doctor said no biggie, forget about it. "We care that your T4/T3 look good." Actually, my T3 was high and out of range, and he wasn't worried about that either as long as I wasn't having hyper symptoms. "Forty years ago this test didn't even exist. We'd be going on symptoms alone if this were forty years ago."
You: "Did nothing to change my labs. Every time I theorize it's my cortisol levels they tend to be normal," --but what about how you feel? I'd give anything to have a Cortef scrip right now--even if my saliva test comes back normal. I intend to insist on a trial of Cortef whether my saliva test shows adrenal fatigue or not because I know firsthand that I tend to have lab results that look as normal as a yellow sun in a blue sky.
I think of these numbers and ranges the same way I think of how many drinks it takes different people to get drunk. Sometimes, the obvious is true--the 6'5" guy who weighs 250 lbs can drink six beers in half an hour and he's barely getting started. But then once in a while there's somebody that big who's a lightweight--he'll be stumbling after two or three beers. With a long list of ailments, heck, even with just one--any of us can find it a comfort to have a set of numbers to go by. And they can be helpful to be sure, but I know, for instance, that I would know way before I had blood drawn if I was having hyper symptoms. I wouldn't need a lab value to tell me that. Ditto hypo. So don't underestimate your body's ability to tell you what's going on. It's the most reliable lab value you've got! I'm sure you'll work it out with your internist--she sounds very competent and caring. And thanks for starting such an edifying and lively thread! Sandy ------------------------------------------------------------------------------------- Sandy, You're such a great source of info. I'm not quite sure about the role of TRH and how that would be an accurate measure but it's certainly helpful to discover innovative possibilities. As for PCOS and it's relationship to adrenal fatigue it is important! In my case, looking back, we've been able to identify a long history of PCOS symptomatology. PCOS can be exasperated by adrenal dysfunction and stress, however, I think it's mostly a correlation thing for me. With the ovary syndrome, low levels of estrogen and sex hormones can also be attributed by some of my symptoms.
And my dear, this is brilliant, "I panicked about my TSH levels dropping way low, but not only did my doctor wave it off, I'm also now finding out that they really have practically nothing to do with it--the TSH levels--once you'r taking the meds--and they're only vaguely helpful as a diagnostic tool!" Yes, yes, yes. That's another truth I'm trying to understand. So, the misconception is that all through treatment the TSH is a reliable measure of thryoid function. When really, once you've begun thyroid replacement, the TSH isn't as helpful as a diagnostic tool because the replacement begins to alter the body's needs and consequently production and hence, makes the TSH (brain monitor) less reliable.
My TSH level last November was .03 and my doctor said no biggie, forget about it. "We care that your T4/T3 look good." Actually, my T3 was high and out of range, and he wasn't worried about that either as long as I wasn't having hyper symptoms. "Forty years ago this test didn't even exist. We'd be going on symptoms alone if this were forty years ago." I guess I want to have all the answers and know what to do next and I can't. With the forty years ago theory, it entrusts the patient presentation as the most reliable. And when I can't say what symptom is coming from what diagnoses or what treatment or recent change in treatment, it makes it confusing and uunreliable to rely on patient presentation instead of labs. That would bring me back to my overshoot and undershoot hellish year! I do want to thank all of you so humbly for your responses. I have started similar posts before and not gotten this wonderful support. I feel more empowered now. Thank you. Tonia, cagirl261 ------------------------------------------------------------------------------------- Jan-28 9:15 am Tonia, "With the forty years ago theory, it entrusts the patient presentation as the most reliable. And when I can't say what symptom is coming from what diagnoses or what treatment or recent change in treatment, it makes it confusing and unreliable to rely on patient presentation instead of labs." Personally, I would try Cortef and see if it helps. If your symptoms go away, then it was from adrenal fatigue. Even Dr. Jeffries was pleasantly surprised when symptoms he wasn't treating resolved with cortisol. If you take a physiologic dose it won't hurt, and if there is a chance it may help why not give it a try. I wish I could get a prescription of Cortef but my doctor isn't open to the adrenal insufficiency theory yet. Jayjas ----------------------------------------------------------------------------------------- Jan-28 9:17 am I'm curious to know how they came up with your diagnosis of PCOS. This syndrome has a lot of variations and you don't have to meet all of the criteria. However, DHEA-s are often elevated in this syndrome. Some people including my doctor believe that PCOS results from hypothyroidism ( or iat least it can). He says lack of thyroid hormone to the ovaries reduces their function and leads to incomplete ovulation and low progesterone setting up a cycle that produces polycystic ovaries. Just a theory but an interesting one. He also believes that sleep apnea is a common problem with hypothyroidism and I know of someone who was also diagnosed with sleep apnea and was using a CPCP machine at night- he started increasing his Armour to try to eliminate some other hypo symptoms and found that his sleep apnea went away when he got to the right dose for him. TSH was indeed suppressed at that point.
TSH and thyroid hormone production is normally based on a feedback loop that is somewhat pulsatile (not constant)with thyroid hormones being released a little at a time according to the TSH response. Taking a pill that gives you a blast of hormone MAY create a situation where the feedback mechanism becomes confused somewhat. I wish they would just quit testing the TSH once people are on meds because in most cases it leads to undertreatment. My Mom has free T3 and free T4 levels below the normal range if her TSH gets anywhere close to 1.0, but doctors value the TSH more than the free levels in our area of the country. I blame her longterm undertreatment for her dementia that is making her almost unsafe to live alone at this point. How I wish I had understood this before or more importantly, that her doctors had understood. It is too late to reverse this now. Nancy, Virginia, USA ------------------------------------------------------------------------------------------ Jan-28 10:16 am Pat....have you had your adrenals checked?? I too have to take a 2-3 hour nap clock work....and I too dream while in that deep sleep. My problem is adrenals. I noticed in your post to dottye...congrats on her new title.....that you are in AL. I'm in the Huntsville area and have a great doc. If you are in the area and want her name....let me know. ANgela/Huntsville, AL ---------------------------------------------------------------------------------- Jan-28 1:22 pm Hi Angela, I have read many of your posts and I am aware of Dr.McKelvey(Sp?) in Madison. I am about 100 miles south.I have an appt. tomorrow with a "Top Doc" endo....I will post later on MY opinion of whether he really IS a 'top doc."I have had 5 referrals to him..two on the Top Doc site and 3 from other being retired head of endocrinology at UAB Medical Center.(He flies with my husband)I will certainly keep Dr. McKelvey in mind. I have been using my PCP for the past year and he practices in the Broda Barnes fashion.But...we are a little stumped here with these low range FT3 & FT4's along with a low TSH.If I felt good then it would not matter, but I am so very tired! I have not had adrenal testing (as far as I know) and it has been brought to my attention by several people on this board. I will try and insert that idea into my new doc's head tomorrow. -Pat/AL ------------------------------------------------------------------------------------ Jan-28 2:32 pm The endocrinologist probably prefers to manage only with T4 and is thus giving you reasons for not using T3. If you do fine on only T4, then great. But if not, then you'll be back to the armour or some other source of T3. Here's my take on what is happening. As you decreased your TSH, you decreased your thyroid's production of T4 and T3 with a greater reduction in T4 than T3 because the thyroid produces more T4 than T3. Your T4 dropped dramatically while your T3 dropped less. Your ratio then got out of balance with greater T3/T4 ratio than is normal for your body. The increased T3 further dropped your TSH. In turn, the dropped TSH further decreased your own thyroid's production. Adding more T3 only aggravated the problem. Also, you need to get the total picture - total T4 and free T4, as these values will tell you how much is bound and how much is free. There is a possibility that your antibodies decreased leaving more thyroglobulin binding sites available for thyroid hormone. With more binding sites available, your free hormone levels would drop. Also, if your estrogen levels increased, you would have tighter binding of thyroid hormone to thyroglobulin, again leaving less free hormone. I think you need to check your estrogen, and your total T4/free T4 to see where they are before making further adjustments. --------------------------------------------------------------------------------------- Jan-28 3:29 pm Wow...such amazing observations. Can't thank all of you enough. It amazes me because with all of my doctors and even paraprofessional friends - most of them don't understand endocrinology. And all of you just seem to have such a great handle on it. As for a trial of physiological dose of Cortef, I have been reserving that for a time when they don't change some other medication. As I have described, I've had a number of different things going on and I want to be able to distinguish if Cortef is what's helping me. I'll be trying it soon. "Taking a pill that gives you a blast of hormone MAY create a situation where the feedback mechanism becomes confused somewhat. I wish they would just quit testing the TSH once people are on meds because in most cases it leads to undertreatment." Definitely a good observation. I'm beginning to think that TSH unreliability is simply the result of treatment (T4, T3 or otherwise). I'll be sure and talk to my doctor about this. Thanks again.
As for the PCOS diagnosis, like you said, "This syndrome has a lot of variations and you don't have to meet all of the criteria." Essentially, when taking a history, I remembered when I was a teen, I was placed on bc to alleviate very heavy, irregular periods, acne and central weight gain. They didn't know much about PCO back then. In fact, it was considered a rare disorder called "Stein-Leventhal Syndrome." So, eight years later when I began to have depressive symptoms and gaining weight (probably the start of my Hashi's), my doctor discontinued my bc and started me on Zoloft. Was it the Zoloft? Discontinuing the bc - did it start my PCO all over again? Well, 60 lbs. later and on ultrasound I had multiple follicular cysts on both ovaries and one ovary enlarged. Elevated insulin (key component to PCOS), and super low estrogen, testosterone, progesterone, DHEA, you name it. It's not typical in that I don't have to deal with excess androgens. She said, "You don't have to have every last symptom. You're just lucky!" So, onward and forward with the treatment of PCO. As for PCO and its correlation with hypothyroidism, I've done a great deal of research into this. There are a lot of theories out there. When women are overweight, you are at increased risk of PCO. The higher your weight goes, the more at risk you are of having problems with ovulation and hormones. As your weight increases, usually so does insulin insensitivity and/or excess insulin resulting in insulin resistance. My endo was great about saying how very easy it is to gain weight with these two underlying problems and how it's a bear to try and lose with both. So, I do believe PCO is more common with hypos for numerous reasons. One endo problem can lead to many endo problem. The infertility that results from hypothyroidism, as you pointed out, can cause a cycle of PCO. With hypo, weight gain is almost unavoidable and that puts you at risk for PCO. For me, I think I was one unlucky one who has had it for many years just undiagnosed and unknowingly treated ( via birth control). Once they arbitrarily discontinued my birth control, the PCO symptoms showed up. As for the sleep apnea, essentially the only correlation with weight and apnea is the circumference of your neck. And in women, sometimes very large breasts can press in on their breathing system. But generally, if you happen to be someone who gains in their neck then you may be at risk for apnea. This is why apnea tends to afflict men more prominently. They tend to gain in the neck. And weight loss can only help to alleviate sleep apnea if it reduces the circumference in the neck (or the occasional breast weight reduction). I've had sleep specialists, surgeons, etc. say that they've had people say they've lost 100 lbs. and they feel so much better. But when they test them - same apnea, same back problems, same disrupted sleep. He said, "Of course, they feel better having lost 100 lbs. That doesn't mean it cures everything weight loss puts you at risk for!" Bummer. Again, I've had doctors tell me all sorts of things. There is a lot of theories out there about declining estrogen and apnea, weight gain and my opinion, it's theories developed due to commonalities among studies. For example, it seems the majority of women that develop sleep apnea are older. Hence, all of the research candidates are in menopause, hence, they all have decreased estrogen, hence low estrogen = apnea. True sleep apnea is a disorder unto its own. You can develop sleep apnea after weight gain (pregnancy, after injury, hypos, etc.). However, true apnea is most often an anatomical disorder involving the palate, tonsils, tongue and/or nasal pathways. People that are 90 lbs. still have apnea if it's an anatomical disorder. It's also a degenerative disorder so it gets worse over time (hence, older people tend to be the ones that get diagnosed). Thanks again for all of your help ladies. Tonia, cagirl261 ------------------------------------------------------------------------------------ Jan-28 5:05 pm Tonia-- As for a trial of physiological dose of Cortef, I have been reserving that for a time when they don't change some other medication. As I have described, I've had a number of different things going on and I want to be able to distinguish if Cortef is what's helping me. I'll be trying it soon. Exactly! I've been meaning to say that to you--to adjust only one variable at a time--and I was going to ask you out of curiosity if there was some reason that you didn't want to try the Cortef, but it sounds like the reason is the very practical one that you don't want to cloud the results. Which is good sound reasoning. I admit that I'm totally biased--I think it's going to be the missing link, and I hope you'll keep us (me!) posted! Sandy ------------------------------------------------------------------------------------ Jan-28 5:15 pm According to one of the manufacturers of TSH tests, TSH tests are not particularly reliable within several months of dose changes. See which includes the statement:
"TSH results may be misleading during the several months required for full equilibration of thyroid physiology following initiation or significant alteration of a treatment regimen. Total or free T4 generally serve as the front-line assays during this period."
That was my experience. When I switched from T4 to T4/T3, my TSH went down to .5 and my doc was a little concerned but left my dosage as is because I felt so good. [Any my pulse and temperature were back to normal.] Six months later, my TSH was up to 2.5 and my doctor had to up my T4. Six months after that, my TSH was fine, near one, but my T4 was still low, so my T4 got upped again. [My T3 stayed at 10 mcg a day.] That made the difference in my symptoms. The lesson I took from this is that the tests are one piece of information, but not the most important piece. I routinely check my resting pulse, my morning body temperature and keep a symptom journal of suspected hypo symptoms. Before I see my doctor, I write him a letter on the progress of my symptoms.
What you have to remember about these tests is that they are somewhat helpful, but they are flawed. One should not seek to treat the TSH, but the patient. My doctor thought that the .5 TSH I had two months after my med switch was probably due to the fact that the higher dose of T4 I had been taking before the switch was still in my system. Just because they say that most people clear T4 in six weeks doesn't mean we all do! I have a poky hypothalamus, and it can take four to six months for my TSH to respond to a med change.
There is a TRH test that can be done to see if there is even enough TSH available to be produced by the pituitary. Sometimes the pituitary stops producing TSH for some reason. -------------------------------------------------------------------------------- Jan-28 5:38 pm The person I mentioned whose sleep apnea went away on an increased dose of Armour experienced relief of the apnea with the dose increase, not with weight loss. He had been formally diagnosed and had even had some type of surgery by an ENT without relief. He thinks his thyroid probably presses on his trachea even though it does not seem enlarged from the front, where docs examine it. Thyroid meds can suppress the size of the gland as well as its function. It may actually have some effect at the brain level where breathing is controlled. Hard to say, but I'm beginning to believe alot of the anecdotal evidence more so than many of the studies. There aren't really many studies that are done on hypothyroidism where people are really well managed since euthyroid is considered a normal TSH. Kinda skews all the results for me! ---------------------------------------------------------------------------------------- Jan-28 10:37 pm Well, there you go! That link...VERY helpful! which includes the statement:
TSH results may be misleading during the several months required for full equilibration of thyroid physiology following initiation or significant alteration of a treatment regimen. Total or free T4 generally serve as the front-line assays during this period.
I think this tells it all! I had been very concerned regarding my TSH being so screwed up after treatment. After hearing other people's stories, I realize that normal TSH labs don't usually follow treatment. I guess I was under the assumption that every six weeks, you test TSH, free T3, free T4 and adjust accordingly including my symptom presentation. But it just seemed that my TSH never accurately reflected my free levels. I started to get concerned when my TSH was off the charts low and my free levels kept dropping.
When I met with that horrible endo and she told me that it took a long time for the brain to get adjusted to the thyroid and to be patient, it was amidst her being a total and complete jerk. The other part of this whole thing is that she was under the impression that it was the T3 that confused the brain. Just dumb. Stupid. It doesn't matter if it's short acting or not. Potent or not. And according to the above quote, any significant alteration of a treatment regimen can make the TSH unreliable. It does NOT say only if you use T3.
I feel MUCH better. I can't thank all of you enough. This makes me feel a lot more confident about my involvement in my treatment. I was beginning to second guess myself because obviously I was doing something wrong, right? Or so it seemed. I know my endo is good. She was amazing and she's probably the sixth endo I've consulted with over the last year and a half trying to find a good specialist! Again, she wasn't opposed to T3. She said we needed to see if I needed it. That it has made it difficult to manage my hashi's due to so many changes. Because my internist and I would test every 6 weeks and re-dose accordingly. It was making me nuts! So, she wanted to clean up the doses, dc some of the medicines that had been added probably to treat unmanaged hypo and get it all under control. I think I will discuss my new info regarding TSH and ask her to keep an eye on my T3. If after my free levels of T4 look normal and I still don't feel good, then I feel confident asking to try adding T3. Until then, I just want to do one thing at a time! Thanks again! Tonia, cagirl261 ----------------------------------------------------------------------------------------- Tonia, You can't ingnore treating the patient. What good is a perfect TSH if you feel like crap. I too have the same problem with a falling TSH AND falling T4 and T3 and am on Armour. My TSH is .3, which I belive is just in the hyper range, but I don't have any symptoms of hyper. My doctor decided to leave me a current dose to give my body time to adjust and we will re check in 3 months. I guess this make the most sense, I am not interested in changing medication to fix my TSH if I am feeling OK. If test come back wacky again I will speak to her about secondary hypothyroidism and what test can be done. If you feel good on T4 alone, great. I didn't and that is why I swithched to Armour. . I could see it might make it read lower than it should, but why would both the t3 andt 4s be low? That I don't understand. I don't know about the T3 making the TSH unreliable. If it does, then maybe the testing should be changed, not nessarily the medication. Let us know how you make out on your new medication. Good luck, Sara -------------------------------------------------------------------------------- Sandy, Great informative post. I am at the point of low TSH with low ft4 and low ft3. I will have to check with my doctor about the total t3 and total t4 and compare that to the free Ts I have had. It would certainly make sense that if most of my hormone is bound, the pituitary is still reading it, but the FTs test are showing they are low. This I hope is a simple answer to my wacky test results, thanks so much. It does pay to come on this site and browse through related post!!! Sara