I had my 3 month endo visit yesterday and need your opinions.
First--Birch, I asked him about the rapid heart increase we both seem to be having while exercising. He could find nothing that would be worrisome during my exam. He told me to go ahead and exercise, but to be cautious and mindful of my heart rate. I told him I kept my heart rate around 125-130, and he said that's a very good exercise rate and to keep it there. If it goes higher, to slow down. My BP was 126/70 and resting heart rate in the office was 76. He saw no reason for me not to exercise moderately.
I know you are smart enough to know that's my body I am talking about and you may be very different; but also I know you wanted the feedback since we are taking the same meds and having similar problems with exercise. Be cautious though, I don't want you in trouble with your heart either!
Erinbeth and Midwest--my labs came out a bit screwy and have both my endo and myself puzzled a bit. My TSH was at "0", zip, nada, nothing. No, I have not been feeling my best the past several weeks with a TSH that low. I'm not feeling "bad", but also not as good as I know I can when my TSH is more around 1. However my FT3 and FT4 were still in the low end of the range, even with the cytomel. (I don't remember the actual lab numbers, he will mail me a full report later this week) Get this Midwest--are you sitting down--my endo actually said--and I quote--"the TSH is not the end all and be all of thyroid treatment dispite what other's may believe, the frees play a major role in treatment." I am delighted with that response, but what I think I really need, is all my numbers to come up a little bit, TSH, and the frees. My endo does not want to decrease my meds to bring the TSH up, because it will drop the frees. I am so very ok with not decreasing my meds. becasue I know my body needs it, but how on earth can I increase the TSH so I feel a bit better, without further lowering the frees? He does not want to increase my meds either to bring up the frees, when it will suppress the TSH more. I really don't think I can tolerate an increase anyway in either the cytomel or synthroid. He says to just hold where I am at and check back in 6 months, unless I have unusual symptoms. He's scratching his head as to what to do to bring all the labs up a bit, but wants to wait and see if my body adjusts on its own at the dosage I'm currently at. (100 synthroid, 10 cytomel) Opinions, girls??? Midwest, have you ever heard of someone alternating days with cytomel as they sometimes do with synthroid dosges? I though I might try on my own to do 5 cytomel one day and 10 the next, but am a little uncertain to mess with T3 in that way? Or try with a cut half cytomel and do 7.5 a day rather than the full 10 as I am currently on-5 in the AM and 2.5 in PM? Would love any ideas, any of you have!!!
The very best news though is that my calcium is back more in the normal range. I came in at 9.8 on a range of 8.-something to 10.4. My previous three calciums have been at the top of the range at 10.4-10.5. I am so delighted with that lab. as it seems that I am just normally a bit high on the calcium range. My urine calcium came in normal (2nd test, one 6 months ago and one recent) and the 2nd PTH also came in right in the middle of the "normal" dotted line box on the grid of the lab sheet. So it does not look like I have a parathyroid problem!!! Yeah!!!! I've escaped that surgery! and I have the ok not to watch my calcium intake so very carefully because it could skew the labs. and give a false reading. I can have vitamin supplements without watching so very strictly--what a bother that has been!
Thanks to my thyroid friends for listening. Hope you all, Birch, Erin, and Midwest, and everybody else out there are doing well. Keep me posted to your progress too!
The following user gives a hug of support to Red Maple: B Web (01-17-2011)
The Following User Says Thank You to Red Maple For This Useful Post: B Web (01-17-2011)
Get this Midwest--are you sitting down--my endo actually said--and I quote--"the TSH is not the end all and be all of thyroid treatment dispite what other's may believe, the frees play a major role in treatment."
TA-DAAAAA! The man's a genius!!! If you want to, Red, give the man a plug so others can find him and benefit from his wisdom. (Name and city only is allowed.) Wow, aren't you lucky to have him?!
Now that he's confirmed what I've been saying, when will you start believing me that TSH doesn't matter? LOL I still say it's coincidence that you had trouble when your TSH was low... [btw, has the heartburn returned recently, during the time since TSH has been low? You don't mention in this post that it has.] I believe something else was causing the heartburn, but you associated it with low TSH because they happened concurrently.
Why would you want to cut back on Cytomel when your FT3 is still low? Oh... I guess you want to attempt bringing your TSH up? Hmmm... I guess it might, but you'll probably lower your T3 in the process. I just don't know enough about Cytomel to say whether alternating daily doses will accomplish anything, because of its short half life.
It's probably wise to wait for a while to see if levels even out in the next few months. From the way you describe this doctor, even I might trust him to do the right thing. LOL You know that's saying a lot from me!
Hello my fellow tree,
So I just wrote this long post about how I'm happy for you re: your calcium , I'm sorry that you're still not feeling well, etc. and...I got kicked off the healthboards. Happens quite a bit...
I'm glad to hear the good news about your doctor and TSH, and your good heart rate. I've actually stopped exercising for the time being to let my cardio system adjust. Except for TODAY (I'm foggy, somewhat nauseous, a bit shaky - could be flu, could be thyroid, who knows), I've been feeling great (just since my "bad day on cytomel" thread). No more odd chest sensations or funny pulse.
I have to agree with Midwest re: TSH. Mine tested at .18 last time and must be 0 by now with my cytomel increase; yet I've been feeling a lot better (except for today, of course). Other things to consider - an increase in synthroid and cytomel due to low frees (I know, dear, your nervous about TSH but...), your adrenal function - have you had it tested?, just staying the course as your doc said. How about any life changes - could that be affecting your thyroid meds? What are your symptoms, how are you feeling bad??
Hope I'm not being too nosey - just trying to help a thyroid buddy figure things out.
Just a quick note... I had the wierd heart rate thing with wierd fluttering and what helped me was magnesium - I know it sounds too easy, but I've gone off of it and had the symptom reoccur - then started taking it again and it's gone. Everyone is different, but thought I'd mention that this helped me.
Also, about the suppressed TSH. My TSH went to .01 almost immediately upon taking Armour, and I didn't feel better until my Frees started moving upward, which took several months. Hang in!
Your right, you need further information. My last post may have been long but was incomplete. I KNOW that TSH matters to me, because when it is suppressed I have hyperlike symptoms. I'd put up with a little bit of an "edgy" feeling from hyper but worst is the "lump in the throat" feeling, that is diagnosed as LPR rather than heartburn from more common acid reflux. The LPR has been running rampant since just after the beginning of the new year, about two weeks after I increased the cytomel from 5-10. I have not mentioned it in a post during the past several weeks waiting on labs from my doctor's visit. You are so very right in that I did not give you enough information in my last post for you to give me accurate advise. My bad...
I cannot begin to tell you how uncomfortable that is to constantly have a feeling of a grapefruit stuck in my throat. That discomfort subsides SIGNIFICANTLY when my TSH is higher and at about "1", which makes me think that the "reflux" is a symptom of dipping into the "hyper side" rather than an issue in and of itself. Especially when none of the therapies and meds. for acid reflux ie. PPI's, diet changes, raising my bed a few inches etc. makes any difference at all to my discomfort. I spent nearly a year treating this as just acid reflux with no relief at all from the standard treatments for reflux. So far the only thing that relieves this lump feeling in my throat is to raise the TSH. Of course it's always possible that it is totally unrelated to the TSH, but the fluxuation in discomfort coinciding with the higher or lower number of TSH it leads me to believe there is something there. I have been dealing with this miserable issue now for over 3 years and know and understand it on an intimate basis... I live inside this body and know what I feel when the TSH is too low. I know you guys know what I mean by that, because you have all made the same case to your doctors about your need for a higher T3, just based on what you know from living inside your bodies. The lump in the throat is my major symptom when the TSH is so low, and it's hell to live with!
Midwest, like you were just "dismissed" by so many doctors about your need for T3, I am just "dismissed" with the ENT's etc. who do not believe there is a relation between my TSH and the "reflux" issue. I have had them stick so darn many scopes down my throat to figure this out I gag just thinking about it. There is nothing there in my throat other than "a little redness", it must be LPR. I get the same reaction of "here's your Nexium" take two of these a day and you'll be fine soon, watch your diet, you're probably just a little dehydrated-drink more water, you're just imagining this, could this just be stress, it has nothing to do with your thyoid...and on and on and on. I need your experience Midwest; please, please,--don't just dismiss me with "when are you going to believe me when I say that TSH doesn't matter". I am not just imagining this. I really need you to believe me when I say---in my case I really think it DOES matter. How many doctors have you gone through who tell you that FT3 really "doesn't matter"? I so very much need your advise, expertise, and support. I don't want to feel like I am fighting a battle to get you to believe me that the TSH lab. really does make a difference in how I feel; just as you have felt with endos who don't believe you when you tell them that you KNOW that T3 is key to your treatment. Nothing would make me happier that to find that there truly is not a relationship with my TSH, and that someone could "cure" this some other way, if you know of anything else--I'm very open to your input. But so far the only connection I have found is that when my TSH is low, the "LPR" is at its vile worst. Tell me please can that possibly not matter, and therefore what direction to look in for relief?
Thanks for listening, if for no other reason than to let me vent. Thanks for understanding my frustration and putting up with it. I'm going find the answer to this someday---please hang in there with me.
oh, BTW, my doctor is Dr. James Grua, in Salt Lake City, UT.
1. My alert system has been reminding me for two days to watch for your post. I was beginning to think you had forgotten your promise.
2. Whew! After reading your whole post, I was extremely relieved you didn't post to tell me to exercise!!!!! I'm not ready for that yet!
3. Thanks for posting! I am interested!
ok, annoying animation over, random comments commence ...
I thought I had learned, once you start taking T3 in any form, the labs to watch are FT4 and FT3, that TSH becomes suppressed when you take T3 and no longer tells you anything useful.
As for playing around with dosage on your own, everybody knows by now I don't think it should be done without concurrence from the doc unless one experiences life threatening side effects. In that case, stopping the meds and getting emergency medical attention is, of course, good common sense. A couple of reasons for not dosing yourself: 1) makes it hard to impossible for the doc to figure out what to do next when you get your next labs and he finds out you paid no attention to what he told you to do, and; 2) some good docs would fire you in some cases like that because you make yourself a potential liability risk and no doctor needs that.
I think the doc's advice to leave both doses as they are is sound from all I have read. Waiting gives your body plenty of time to adjust and make the best of what you are doing for it.
All that said, you're ahead of me in all this, so I can only read and think about it and wonder how it might play into my situation or not down the road. Once I get as near to the TSH of 1 as I can, I'll probably give my body some healing time at whatever T4 dose that is regardless of symptoms ... unless the doc wants to try something else. I know you did that and I think it makes sense. Especially in my case because I now realize I was rather hypo for many years before I sought a diagnosis and treatment.
I am impressed with your patience and willingness to tough out this adjustment. I know you have some sensitivity to the T3 hormone not everyone must deal with and the adjustments are harder for you because of that. I think I hear you saying that, over all, it has been a gain for you in how you feel. Am I hearing correctly?
Edit: After seeing your second post, I see I may have been hearing correctly, but just didn't know how you really feel. Gawrsh, Deb, that sounds just awful.
First thought is to wonder ... looking at your lab history, can you see a correlation between the symptoms and your FT4 labs? (I think I remember your doc has done those all along?)
Your second post does help me see why you want to back off the T3 some. My only suggestion there is to get the endo on board before doing that. He may actually be aiming at increasing T3 more while decreasing T4. My novice mind and the way it works can see some logic in that if he thinks it is increase in T4, which isn't converting to T3 as it should, causing your problems.
Yup ErinBeth, I'll be posting the actual numbers as soon as I get the report from the doc's office. At my visit we discuss the labs, symptoms, physical exam etc. and he sends me a report a few days later summarizing the visit, his impressions that we discussed and full lab info, with ranges. Though we talked about the lab numbers at the visit with the lab results right in front of me, of course, now I can't remember the actual numbers except for the calcuim since I was so excited about it comming down: and the TSH since I was so disappointed by it, but did expect it to be low by how my throat feels. I should have the actual numbers within a week.
Thanks for the sympathy and yes, the throat thing can be really awful. However I have lived with it for over three years now and don't let it stop me from doing what I want to. Sometimes I use lozenges which are soothing, often just chewing gum can be a minor relief. And when I can get the TSH up a bit, that works the best. As you've heard me say before, just keeping my spirits up, keep a sense of humor, and keeping my priorities on the positive things in life always seems to help me to feel better. I just wish I could find a permanent solution! I will get there, if by sheer determination alone!!!!! Good suggestion about the FT4, I'm going to try to keep more of a journal to give me further information. I don't know what info. I will be able to gather, but any data I can get for myself I'm sure might help, and certainly can't hurt!
Good golly, Miss Molly... I can see my teasing missed the mark. That's what the smileywink was supposed to denote... Sorry, Red. I surely didn't mean to upset you, so I must apologize. You just rant all you want to. That's what we're here for.
I've had my share of 'lump in the throat'. Yep. I know that feeling well, and even though it's been in my past for some time now, I won't forget it anytime soon. Even though mine was associated with high-normal TSH, who the heck would I be to insist that yours cannot be associated with low TSH? You will not find me insisting that ever again, although you won't get me to accept it as likely. It's a draw.
I do have to wonder about why that lump gets worse when your TSH falls, though. Just theorizing here... I have no facts at hand and no idea where to find said facts.... This comes strictly from my fertile imagination. Normally, when TSH is high, the "lump" feeling occurs because the gland is irritated by the constant prodding from the TSH to produce hormone that it can't. But you're different... hmmmm... Perhaps the stimulation your gland receives from TSH "soothes" it somehow, by allowing it to function the least little bit ... but too little TSH turns it completely off, which it doesn't like. I can't help but wonder whether it would stop doing that once your frees are high enough for long enough. Maybe your sick little gland would then realize it has earned a well-deserved vacation, kick back and leave your throat alone. Of course, that would mean you'd have to put up with it even longer than you have, and that's been long enough, thank you very much.
(Thanks for endulging my little bit of thyroid fantasy. I'd be pleased for you to fantasize with me, if you wish. )
This isn't important, because after all, this is your thread and your problem... But to clarify... I have not had to fight for T3. What I had to fight for was a diagnosis in the first place... from a PCP who at first refused to test my TSH at all, then who said 4.83 was "normal" on a 5.5 scale, and who refuses to treat at all until it reaches 6.0. At that point, it was clear I'd get nowhere with him.
So, I took myself to an endo, who diagnosed me, but who only Rx's Synthroid. It wasn't a case of needing T3; I couldn't take Synthroid because the smallest dose overmedicated me, raising my frees above range.
Figuring all T4 drugs would do the same, I took myself to an Armour-prescriber... not because I figured I needed T3, but because I needed treatment, and because Armour was natural and in a different class than T4 drugs. In other words, I wanted to try it because it wasn't Synthroid, not because it had T3.
Well, hang in there, kid. Again, I didn't mean to upset you, but I'm sorry that I did.
Can't seem to get you off my mind, but glad you're going to look at the history of your labs, try to make some sense of them in relation to how you felt at the time, best you can. I do try to keep a journal. Hard to do, I know, and really impossible to know what is related to the thyroid and what is not.
As I said above, your description of the feeling of a lump in your throat sounds miserable and it's impossible for any of us to know if it's just a "kwinkydink" it gets worse when the TSH goes lower. I wonder, though, how it could be a hyperthyroid symptom IF your FT4/FT3s are in the low end of the range. Of course, there is always a possibility something went wrong with those particular labs, right? Probably happens rarely but could happen.
I know you normally take your morning hormones before you get up and, thus, wait a sufficient amount of time before coffee or food, etc. On lab day, do you wait and take the med after the lab? Do you have the labs done at a similar time of day each time? I am assuming you know the cautions against taking the med before the lab when you are having the frees done, yes?
The more I think about it, the more I think your endo thinks you are needing more hormone, thinks you are not hyper. I suspect now that you are taking the T3, he is now watching the frees and your symptoms and not so much that suppressed TSH. While we both know the TSH was a good gauge for us when only on T4 med, we have seen countless examples of TSH being suppressed once people start taking T3.
If your FT3/FT4 labs are correct, it does look like you are unermedicated. Perhaps the endo wants to give more adjustment time and then look at those again to see if that helps with figuring out where to go next. If you are right and that feeling of a lump is related to thyroid, perhaps it will eventually go away for good once you and your doctor find the right level and combination of meds for you.
Another question since I don't remember how much T4 you were taking before starting the T3. Did he decrease T4 as he added T3? When you look at the T4 to T3 equivalency charts, are you taking basically the same amount of medicine as before, just change the mix from T4 only to T4/T3?
First of all, you guys are all so wonderful!!! You put up with my rant, venting etc. THANK YOU!!!!! Thank you Midwest for your patience with my "frustration post" yesterday, I took it out on you...sorry. I do know you truly understand, that's why I value your opinion so much. So a big thanks!
ErinBeth--to answer your questions. No, the T4 dosage did not change when we added the T3. I do take my meds after the blood draw on lab day, and I try to always do the labs in the morning. The exact time varies depending on when I can get there, but do try to do it in the earlier morning so I can then take my meds and eat.
A bit of health history so this may get a little long if you can stand it. If not just click me off your screen!
I started with this endo just a little over a year ago. Prior to that I had been seeing the ENT who did my thyroid surgery. I was on 112 of synthroid from the ENT. He was the first one to diagnose the lump feeling as acid reflux. I had not yet discovered this wonderful board and all the information from other thyroid patients. "Midwest" was just a place I grew up, rather than a thyroid pro...
When I started with this endo, my labs were TSH 0 (range .4-4.7), FT4 1.8 (range .7-1.8) FT3 3.0 (range 2.4-4.2) and a very nasty lump in the throat. I described my various hypo symptoms at my first endo visit and he suggested I try Armour. He also sent me to another ENT for second opinion of the lump in the throat. Second ENT also diagnosed as acid reflux/LPR.
When the Armour did not work for me, my endo switched me back to Synthroid, but dropped the dosage all the way down to .88. Since I was just starting with this endo., I did not have a real history with him, and he wanted to see for himself how I react to meds. He choose to drop my meds down for a short period and build back up to a good level. At that point I was discouraged since the Armour didn't work and I didn't care, building back up was fine with me. With the drop in meds. (to .88) I needed labs 8 weeks later, my TSH went up to 2.0 (same ranges as posted above) FT4 1.0 and FT3 2.2. The lump feeling had improved dramatically. That's when I first thought the lump could have something to do with my thyroid and my TSH level. Of course with TSH at 2 and frees low, I was rather fatigued and other hypo symptoms, but the throat was good. Endo increased my synthroid to 100 and I stayed there for about 3 months and labswith TSH at 1.5. Again throat was pretty good: at synthroid of 100 I not as fatigued as the dosage of .88, but not a lot of energy either.
For the sake of brevity since this is pretty long anyway--Fast forward to this past November, still at 100 synthroid, labs showed TSH still at 1.5, (same ranges) but FT3 at 2.0, and FT4 at 1.08. Endo very concerned that the FT's were so low thus added cytomel at 5 mcg. and left the synthroid dosage at 100. We discussed going back to the 112 synthroid dosage since my frees were not too bad there, but he wanted to try a small amout of T3 instead. I had a period of adjustment to the cytomel but about 3-4 weeks, you probably remember me posting, as the rollercoster of a meds change settled down, I did pretty good at that dosage. Doc wanted me to call him at about 8 weeks after starting the cytomel to report in. I did not do labs, just discussed symptoms over the phone. I asked to increase cytomel to 10 and see if I could continue to improve. That was fine with him. I was hoping that with that amount of T3 that my TSH would stay pretty much around 1ish and the frees would go up. Thus giving me a pretty good balance, I would find the optimum of meds, and feel great! At first things seemed to be going pretty well. But within a few weeks, eventhough my energy is good, no aches and pains, etc. the lump started to increase again. I continued to take the 10 cytomel as I wanted to see what the labs would be at my next appt. with that dosage. Sure enough my TSH is at 0 and the lump is back with a vengance. In retrospect I should have done labs before I increased cytomel from 5 to 10, but the phone conversation was so convienient during the holidays rather than having to run in to the office. My mistake!!! That one even deserves the cover story of the "duh" magazine...
My endo is not as concerned about my throat discomfort as he is with my thyroid labs. He pretty much "bows" to the ENT and diagnosis of LPR. Thus the lump symptom is on the back burner as far as thyroid treatment goes. None of them is positively connecting it to thyroid, but rather acid reflux in the form of LPR, and thus should be treated by an ENT. I won't go back to the ENT as he is a old crumudgeon who won't listen to me that the reflux treatment absolutely does not work. (he says "perhaps it's stress causing the reflux","are your depressed, after all you are of menopausal age"...blah, blah, blah) In the ENT's defense though, I also think the LPR theory is a good one; but IMO when my TSH gets low; I go to a bit to the hyper side; my digestion then goes into over-drive and thus it really is acid reflux that effects my throat. I believe it could very well indeed be LPR, but as a bi-product of my metabolism/thryoid being on the hyper side, rather than just plain old acid reflux. My delima however, is how do I keep the frees where they need to be, without driving my THS down and causing this throat discomfort???!!!!! That just doesn't make sense to me, but my symptoms say that's just exactly what's happening.
My plan for now (after I've cooled off a little) is to just continue at my current dose as directed by my endo. Perhaps patience is the key and I just haven't been on the cytomel long enough for it to do it's magic. It could well take several months yet for it to fully heal my T3 depleated cells. Who knows???, but I am willing to do the wait and see. I've lived with it for this long, what's a few more months. Another option, I also know my doc wouldn't mind if I drop the cytomel back to 5, which would probably bring the TSH up just a bit, however I really want my frees to go up a little if possible, so we'll see if I try that or not. The throat thing is rather uncomfortable, but not debilitating. The lowish frees are also not the best, but also not debilitating. I even can settle somewhere in the middle, with a tolerable lump, lowish frees, but feeling "ok" in sort of a holding pattern until we can come up with something else.
I also think Boata's post is a good one. Now that I have the ok on the calcium, I am not so paranoid to add mineral supplements. I have heard that magnesium is also beneficial for acid reflux and I want to try it in moderation for a bit. Midwest also tipped me off a while back to Selenium and after I am on the magnesium for a while, I want to add Selenium to see what that does. I want to only do one at a time, then add another, so I can better isolate the results.
Thank you all for your kindness right now. With time, I know this too shall pass. I so appreciate your friendships, support, your opinions and ideas. Should I owe any of you reading glasses, please just let me know...
A thought occurred to me while I was reading your last post, but only because I just read a post from dea4, something I hadn't heard before. It caused me to wonder if the problem might be that you have the wrong balance of T4 to T3. She said you don't want FT3 higher in its range than FT4, I think.
Here it is:
Originally Posted by dea4
My thought is you were getting too much T3 and not enough T4 on the previous regimen. ... Its important to keep the FT4 level up, usually mid to upper 1/3 of labs range. The FT3 can be played with a bit but will cause you to feel poorly if its significantly higher than your FT4 and can often cause heart palps when too high.
I can't help wondering if you do still need more meds, based on the free tests, but that the balance might have gone wrong for you when you went from 5mcg to 10mcg Cytomel, if maybe you need to be upping T4 as well proportionately. I guess I'm wondering how things would look with 112mcg Synthroid and 5mcg Cytomel. Or try to increase the Synthroid without changing Cytomel for now working toward raising the frees but trying to keep as close a ratio Synthroid to Cytomel as you had when Synthroid was at 100mcg and Cytomel was at 5mcg and you we doing "pretty well."
Just trying to give a general idea ... the balance was pretty good at 100mcg Synthroid and 5mcg Cytomel. So raise Synthroid to 112mcg (112 percent) and lower Cytomel back to 5mcg. Level, test, check symptoms. If frees are still too low, raise Synthroid to 125mcg (125 per of 100) and, if you can, raise Cytomel to 7mcg. Like that. At whatever point the lump becomes a problem, with doc's agreement, back off on something, depending on how the last labs looked, the idea to not let FT3s get above FT4.
Just suggestions. If your doc thinks the idea is nuts, so be it. I just think you're not getting enough medication somehow, but totally understand why you feel this all somehow has something to do with the lump. Maybe it is suppressed TSH or maybe it is too much T3 to T4 ratio, but you need more of either T4 or both to get the free levels up?
When I started with this endo, my labs were TSH 0 (range .4-4.7), FT4 1.8 (range .7-1.8) FT3 3.0 (range 2.4-4.2) and a very nasty lump in the throat.
With the drop in meds. (to .88) I needed labs 8 weeks later, my TSH went up to 2.0 (same ranges as posted above) FT4 1.0 and FT3 2.2. The lump feeling had improved dramatically.
That's when I first thought the lump could have something to do with my thyroid and my TSH level.
For the sake of brevity since this is pretty long anyway--Fast forward to this past November, still at 100 synthroid, labs showed TSH still at 1.5, (same ranges) but FT3 at 2.0, and FT4 at 1.08. Endo very concerned that the FT's were so low thus added cytomel at 5 mcg. and left the synthroid dosage at 100.
... [after minor dose changes]... I was hoping that with that amount of T3 that my TSH would stay pretty much around 1ish and the frees would go up. Thus giving me a pretty good balance, I would find the optimum of meds, and feel great! At first things seemed to be going pretty well. But within a few weeks, eventhough my energy is good, no aches and pains, etc. the lump started to increase again. I continued to take the 10 cytomel as I wanted to see what the labs would be at my next appt. with that dosage. Sure enough my TSH is at 0 and the lump is back with a vengance.
Red, you've proved my point about TSH's non-relevance in the most obvious way!
I've isolated all these quotes of yours for editing purposes and simplicity's sake.
As you can see in the first quote, your TSH is low -- but that isn't why you had the throat lump. As you can also plainly see, your FT4 is at the very top of its range. That's hyper for all but the rare person, and the lump is a sign of overmedication. It also can be a sign of undermedication - as it is for me; but symptoms cross over from hyper to hypo all the time, so this difference is common and no surprise.
In the second quote, your TSH rose, but that was solely because your FT4 fell. The lump went away because you were no longer hyper - because FT4 fell, not because TSH rose. Again, I stress, TSH plays no role in symptoms; the FTs do.
In your third quote, TSH is higher because FTs are lower; no lump because no overmedication, no hyper, lower FT4 - not because TSH is higher.
In the fourth quote, you mention TSH is low, lump is back... but you don't mention FT levels. I'm guessing they weren't done this time? If they were, it's my considered opinion that one or both has topped out again, and that's why the lump is back.
Seems clear that your lump is tied to overmedication in your case, not under as it is for many people. Once you find your optimal dose... the dose where your FT levels are high enough to give you the energy you're lacking, but low enough to eliminate that lumpy throat... You'll be well!
I don't remember seeing all of your results spelled out this way before, or I would have seen how they're tied to your lump and possibly? have convinced you why TSH isn't causing that lump. If you continue to watch all three levels, you'll no doubt see the correlation between high/lower TSH and high/lower FT4. Aim for control of the FT4, not the TSH, and you'll find your optimal dose.
You are the perfect example of why FT4/FT3 count the most! I don't know any other way you could isolate your symptoms according to where your thyroid hormone levels are other than testing FT4/FT3 at each checkup (or when symptoms change). That's why FT levels count for far more than TSH when one is in treatment.
Your doctor seems competent and willing to change doses all around for you in an effort to get it right. That's great. Try to be patient; you'll get there, hopefully sooner than any later.