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Med change to correct hypo sx's has resulted in heart mess.
Hi, new here and hoping for some leads. I have Graves and had partial thyroidectomy years ago resulting in stable use of replacement for 10+ years now. Recently started feeling hypothyroid (fatigue, hair loss, etc). Blood work comes back low/normal THS (.761) and low free t4 (direct) (.78). Primary care Dr. increased my thyroid medication. Within 2 weeks, I am having increased heart palpatations, tachycardia and arrhythmias (per holter monitor), dizziness, shortness of breath and activity intolerance. 1 month after the med increase, my TSH is now low (.045), but my Free T4 is normal (1.12). I feel horrible and terrified every single day. Cadiologist and Primary suggest alternating the previous and new dosage of thyroid medication - provides only slight relief. I See Endocrinologist, who says the initial blood work was "normal" and meds should not have been increased (despite the hypo symptoms). I am now on yet another (lower dosage), and in this past 5 days the heart sxs are lessening a bit. I'm not sure what to think. Does anyone have any thoughts as to what the real problem might be?
COMMUNITY LEADER
Unfortunately, they won't let me in to teach in the classrooms in med schools, but there are some doctors out there that are teachable, once they realize they don't know it all and are willing to listen to their patients. We patients have to be our own advocates and when we don't feel comfortable about the treatment we're getting, we have to find a doctor we do feel comfortable with.
LOL Barb! Not withholding - a lifesaver for sure! It's been so long that I've been stable on my meds, I've forgotten what a pain it is to not be, particularly now that complicating factors have popped in. Primary care's been able to handle it, but looks like no longer. You've been an incredible help! And, I'd bet have trained some good endo's! Sounds like you have a great one, and I'm really glad. :) Lol, I'll get to work on mine!
COMMUNITY LEADER
Oh my, I feel like I was withholding information, when that isn't the case, at all... lol
It's hard to tell about endos. The endo I go to has a sign out front that says he specializes in diabetes, but he does just fine with my thyroid... as in, tests FT3/FT4, keeps tabs on antibodies, does periodic ultrasounds to make sure the physical characteristics of my thyroid aren't changing, keeps track of my bone density levels to make sure I'm not losing bone, etc. The best part is that once he realized that I feel just fine with my FT4 around mid range and FT3 mid range or a bit higher, he doesn't mind letting my TSH live in the basement. His biggest concern was bone density and once I showed him documentation about how controversial that is, he backed off, but still insists on keeping tabs on that, which is okay with me, because I had osteopenia for several years before I became hypo, so it needs to be watched anyway.
You'll have to see what tests the new endo is willing to run and whether or not he panics over the low TSH; if he does, he's not worth a hill of beans and you might as well try a diabetes specialist - you might be able to train one of them... lol
It's hard to tell about endos. The endo I go to has a sign out front that says he specializes in diabetes, but he does just fine with my thyroid... as in, tests FT3/FT4, keeps tabs on antibodies, does periodic ultrasounds to make sure the physical characteristics of my thyroid aren't changing, keeps track of my bone density levels to make sure I'm not losing bone, etc. The best part is that once he realized that I feel just fine with my FT4 around mid range and FT3 mid range or a bit higher, he doesn't mind letting my TSH live in the basement. His biggest concern was bone density and once I showed him documentation about how controversial that is, he backed off, but still insists on keeping tabs on that, which is okay with me, because I had osteopenia for several years before I became hypo, so it needs to be watched anyway.
You'll have to see what tests the new endo is willing to run and whether or not he panics over the low TSH; if he does, he's not worth a hill of beans and you might as well try a diabetes specialist - you might be able to train one of them... lol
Aahhhh! THAT'S the piece I was unable to find - that is not uncommon for TSH to be low when on replacement therapy. Thank you! Unfortunately, there are only 5 endos in the general area and most of them focus on diabetes. The one who does thyroid only is no longer taking new pts, and the one he's referring to is very backed up, but I think will be better than someone who focuses primarily on diabetes. (Nice guy but still ;). THANK YOU, Barb!
COMMUNITY LEADER
I'm happy to hear that you've set up an appointment with another endo. I hope you did kind of a pre-interview, to find out if this one will test FT3 and pay attention to something besides TSH?
There really isn't any reason to suspect pituitary involvement. You simply have low TSH. It's not the least bit uncommon for TSH to be low or suppressed when one is on a thyroid replacement hormone. My own TSH has been sitting at < 0.01 or 0.01 for the past 6 yrs and I'm not hyper, nor do I have a pituitary issue.
Doctors are taught that TSH is "the" gold standard in thyroid testing/treatment and that couldn't be further from the truth. As I noted before, it neither causes nor alleviates symptoms, nor does it even often correlate with FT levels, in spite of the fact that they say it does. I've had doctors insist on lowering my thyroid med because of my TSH and they send me straight to hypo he!!. Of course, when they do that, I have to go back to my endo and get it put back up again. I'm fortunate that my endo understands that once being treated, TSH often plummets and can't be relied upon.
There really isn't any reason to suspect pituitary involvement. You simply have low TSH. It's not the least bit uncommon for TSH to be low or suppressed when one is on a thyroid replacement hormone. My own TSH has been sitting at < 0.01 or 0.01 for the past 6 yrs and I'm not hyper, nor do I have a pituitary issue.
Doctors are taught that TSH is "the" gold standard in thyroid testing/treatment and that couldn't be further from the truth. As I noted before, it neither causes nor alleviates symptoms, nor does it even often correlate with FT levels, in spite of the fact that they say it does. I've had doctors insist on lowering my thyroid med because of my TSH and they send me straight to hypo he!!. Of course, when they do that, I have to go back to my endo and get it put back up again. I'm fortunate that my endo understands that once being treated, TSH often plummets and can't be relied upon.
Yes, Barb, after reading more comments about Endo ' s getting stuck on "TSH only" ruts. I have set up a second opinion and am going to talk with primary care on Friday. The initial bloodwork showed I was clearly hypo, per t4, despite a TSH at the very low end of "normal". He actually x'd out the t4, as if irrelevant, and pointed to the TSH, and saying the meds should have never been raised. ( despite clear hypo sx's) I am grateful the heart sx's are lessening, but don't want to be hypo - I found bloodwork from 2 years ago and see a very significant decline in both t4 AND TSH. I you said you don't think the pituitary is involved, may I ask why? I'm really trying to figure out if this is something I should even talk about with the docs.
COMMUNITY LEADER
It seems that your cardiologist and primary are doing better than your endo anyway, so yes, I'd say you can afford to wait. January is only a couple months away and since it sounds like you have a good cardio, he's the one you will depend on if you get symptoms back.
You should keep a diary of your meds and your symptoms so if you start having symptoms, you won't have to rely on memory to note exactly what they are and when they start. That will also be good information for, both, your cardio and the new endo when you see him in Jan (hope the wait time isn't extended to Feb by now).
Good luck and keep us posted.
You should keep a diary of your meds and your symptoms so if you start having symptoms, you won't have to rely on memory to note exactly what they are and when they start. That will also be good information for, both, your cardio and the new endo when you see him in Jan (hope the wait time isn't extended to Feb by now).
Good luck and keep us posted.
Thanks Barb. :) I'm going to make an Appt with another endo for a second opinion. The one I originally wanted had nothing till Jan., but now that the heart sx's are getting better, I can perhaps afford to wait. I so appreciate your response!
COMMUNITY LEADER
A device in the heart can create a whole new ballgame, but again, if the cardiologist wasn't worried about your symptoms, they probably weren't anything to worry about, as far as the thyroid med is concerned.
T3, as in Armour, cytomel, etc is not recommended for those with most heart issues.
I, too, would worry about an endo who says that TSH is the only thing you have to look at when it comes to determining thyroid levels. TSH neither causes, nor alleviates symptoms, nor does it correlate with FT3/FT4 levels much of the time. I think you'd be wise to find another endo.
I don't see any reason to worry about pituitary involvement.
T3, as in Armour, cytomel, etc is not recommended for those with most heart issues.
I, too, would worry about an endo who says that TSH is the only thing you have to look at when it comes to determining thyroid levels. TSH neither causes, nor alleviates symptoms, nor does it correlate with FT3/FT4 levels much of the time. I think you'd be wise to find another endo.
I don't see any reason to worry about pituitary involvement.
Hmmm, interesting that no one has even suggested getting a T3. The heart sx's were scary, scary, scary, but seem to be lessening now on the dose of Levo the Endo prescribed. ( I had been on Armour before). I imagine this is going to be a process. I have a device in my heart that the FDA has placed a warning on (can erode into the heart tissue, creating hole), so it complicates my tolerance for heart related symptoms. I worry that the endo (new to me) said TSH was the only thing to look at when determining levels, as I read through the sites. Perhaps another would be wise. Any thoughts on pituitary involvement?
COMMUNITY LEADER
I'd put my money on the cardiologist and the primary doctor... there's no way to alleviate hypo symptoms without increasing med dosage and it's not unusual for symptoms to worsen when changing dosages, since it takes the body time to adjust.
While an FT4 of 0.78 might have been "in range" it would be at the very bottom of any range I've ever seen and is out range of most I've seen. Depending on the range, even 1.12 might be too low. Apparently, no one is testing Free T3? That's the hormone that's actually used by the individual cells and is most important.
If the cardiologist is advocating increase in thyroid medication, apparently, none of the heart issues have been found to be of great concern to her/him, though they can be very scary to the patient. When I was hypo, I have rapid heart rate, palpitations, pounding heart beats, shortness of breath, "awareness", etc. It was all very scary for me, but once I'd gone through the heart work up and my cardiologist assured me that there was nothing to worry about (we did find that all 4 of my heart valve leak and have to be watched), I was fine with increasing my thyroid me and once my levels got to where I need them my heart issues went back to normal. I no longer have shortness of breath, the pounding/awareness is gone, as are the palps and rapid heart rate. Unfortunately, too many people, including endos, think these things can only happen when people are hyper.
Many of us find that increasing dosages very slowly, as in alternating dosages, like your primary had you doing, works best. I've even done it more slowly than that... you could take 2 days of a lower dose and one day of the higher dose or something like that, or split a dose, etc. It's okay to get creative to get the dose you need.
When I did my last dosage increase, I was taking 88 mcg/day and once/week, I'd take an extra 100 mcg which averaged to 7 extra mcg/day, which brought me up to 95 mcg/day and we eventually increased my dosage to 100 mcg/day, which is where I am now.
You do need to have them start testing Free T3 to make sure you are converting the Free T4 adequately, which some of us don't. Free T3 correlates best with symptoms.
While an FT4 of 0.78 might have been "in range" it would be at the very bottom of any range I've ever seen and is out range of most I've seen. Depending on the range, even 1.12 might be too low. Apparently, no one is testing Free T3? That's the hormone that's actually used by the individual cells and is most important.
If the cardiologist is advocating increase in thyroid medication, apparently, none of the heart issues have been found to be of great concern to her/him, though they can be very scary to the patient. When I was hypo, I have rapid heart rate, palpitations, pounding heart beats, shortness of breath, "awareness", etc. It was all very scary for me, but once I'd gone through the heart work up and my cardiologist assured me that there was nothing to worry about (we did find that all 4 of my heart valve leak and have to be watched), I was fine with increasing my thyroid me and once my levels got to where I need them my heart issues went back to normal. I no longer have shortness of breath, the pounding/awareness is gone, as are the palps and rapid heart rate. Unfortunately, too many people, including endos, think these things can only happen when people are hyper.
Many of us find that increasing dosages very slowly, as in alternating dosages, like your primary had you doing, works best. I've even done it more slowly than that... you could take 2 days of a lower dose and one day of the higher dose or something like that, or split a dose, etc. It's okay to get creative to get the dose you need.
When I did my last dosage increase, I was taking 88 mcg/day and once/week, I'd take an extra 100 mcg which averaged to 7 extra mcg/day, which brought me up to 95 mcg/day and we eventually increased my dosage to 100 mcg/day, which is where I am now.
You do need to have them start testing Free T3 to make sure you are converting the Free T4 adequately, which some of us don't. Free T3 correlates best with symptoms.
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