I saw my endo on Friday and he again went over my results with me. I have Hashimoto's thyroiditis however he said right now I am experiencing hashitoxicosis. What is this exaclty? I am having more and more symptoms of hyperthyroid than hypo. My heart rate is through the roof (He sent me for a holter monitor after my visit and I am still waiting for the results), I am very nervous, vomiting, diarrhea, and contant lightheadedness. Is this all normal and when will it stop. Based on my test results and symptoms he increased my Synthroid to 75mcg. I am going crazy, I can't take this anymore!!!!!
i had "hashitoxicosis" (i put it in quotes because i wasn't diagnosed with hashimotos...i was diagnosed with silent thyroiditis...hashitoxicosis seems to be the term used when thyrotoxicosis isn't caused from graves/hot nodule).
what are your ft3 and ft4 and tsh? i'm surprised that more synthroid was prescribed. that doesn't make sense. you may have these symptoms from too much synthroid.
hashitoxicosis is when your tsh is low and your free t3 and/or free t4 are high. those results don't suggest hashitoxicosis (unless your free t3 is high, but this usually makes your tsh low).
your results suggest a worsening of the hypothyroidism, which is why the doc increased your synthroid. your free t4 dropped. when was the result of 1.08 free t4 recorded? was your synthroid changed between then and now? when do you go back to get your levels checked after this increase?
i would demand that a free t3 also be ordered since you're experiencing the hyper symptoms.
Is it normal to have hyper symptoms with Hashi's or hypo? This is so confusing? The hyper symptoms are not constant but do happen frequenlty throughout the day. Once it kind of subsides I am so tired I can hardly function. This is absolutlely maddening. I can't even take care of my children! My labs have been checked about 5 weeks after dose changes (I originally started on 25mcg). This last result was done on the 12th and that was after 5 weeks on the 50mcg. He said since I am suffering so bad he wants to see me again in 4 weeks and have labs drawn then. Is the Free T4 suppose to go up or down? What about a Free T3, where should that be? So if the meds were causing hyper symptoms then my levels would be lower right?
are you feeling any better? with an increase in synthroid, you're probably experiencing more hyper symptoms. they should subside in a few weeks after your body adjusts to the new t4.
i'm surprised that your free t4 went down as much as it did after increasing your dose from 25 to 50. it will be interesting to see what your free t4 is next time. make sure your free t3 is tested. with your symptoms, it'll be helpful to get the entire picture instead of just tsh and free t4. did your doc order free t3?
I agree with mtkst13 - it would be really interesting to see your FT3. We are all different and all feel well at different FT3 and FT4 levels. I start to feel hyper the minute my FT3 gets off the bottom of the range...restless (can't sit still), diarrhea, insomnia, tachycardia, etc...I'll take hypo any day (at least I can sleep). I'm sure the Hashi's doesn't help that any since our thyroids produce peaks and valleys of hormone levels That's probably why your hyper symptoms are intermittant.
All things being equal (which they never are) it is probably best to suppress TSH to 0.5-1.0. However, in so doing, you just can't blindly ignore hyper symptoms, especially with Hashi's. If it were me (and it's not!), I would not agree to a meds increase when I felt hyper already.
I am so sorry to hear that you are going through all of this. I feel so badly for you and understand how frustrating and stressful it must be to not be able to take care of the children. I wish I had some answers for you. I wish the doctors were more knowledgable in this area...it's so important! I wish you well!
What can be done about the hyper symptoms? I have tried several antidepressants for anxiety but I cannot tolerate them. With my Free T4 dropping and my TSH not really changing, doesn't that warrant an increase in meds? I am so confused. I know that Hashi's can cause hyper symptoms so I don't know if it's just the "war" going on or what. What should I do????? I have been having hyper symptoms for 6 days now is this normal????
I simply can't put up with the hyper symptoms...when I start having tachycardia multiple times a day, can't sleep, etc., I know that I have to decrease meds for a while. It's either because I was started on way to high a dose, or the increase is just too much for me. Increasing from 50 to 75 is a 50% increase...this just after an increase five weeks ago from 25 to 50 (a 100% increase). Am I correct on that? That's probably just too fast for you. I went from 25 (backed off from my original 88 which about killed me) to 37.5 to 44 to 50 to 69 all over the course of a YEAR. Pretty slow going, but that's the best I could do. My endo recently upped me to 75, which went fine, then tried to go to 81.5 (5 weeks later), and I hit the wall again...now back to 75 and holding. 75 to 81.5 is such a small increase, but I sure felt it.
Yes, you would like to see your FT4 increasing, not dropping, and that is something that has to be addressed in the long run. It's just that you can't rush it. If you end up with hyper symptoms, you'll just be miserable. Docotors often don't have a lot of patience...obviously never had tachy! They want your numbers right, and soon, end of story.
My advice, from personal experience, is just slow down the meds increases. You already have hyper symptoms at 50, increasing to 75 is not going to help that situation at all. I'd demand (oooh!) to stay at 50, talk to your cardiologist about something to control the tachy. Then you can stabilize your tachy at 50 levo. Once that happens, you can try increasing levo again (I'd go to 62.5 and then to 75 in two steps at that point). You might find that you need more of whatever you will take to control the tachy as you increase the levo. I've had to increase my BB as I increased levo. I think it's important to stabilize the two before increasing either. Otherwise, you're just chasing a moving target.
Thanks for the advice. I have often wondered if what I am feeling is partly med related but everyone keeps telling me no. My endo actually wanted to increase my meds from the 50 to 88 but I said no and we agreed on the 75. So I guess I should go back to my 50 until the hyper symptoms go away and then try and increase again, is that right? How long should I wait to try and increase again? I just called my endo and asked to have my labs drawn to check for Graves anitbodies as well. I know it is rare but I feel everything should be checked. Thanks again for everything. You are amazing!
it's strange that your free t4 has dropped so much with synthroid increases, and it's odd that you're having severe hyper symptoms with your free t4 being so low. maybe your free t3 is high so your free t4 is dropping to compensate. the body does its own thing in response to med increases/decreases.
when i had synthroid increases, i went through phases of ectopic beats/arrthymias, but it was only occassionally and the issues subsided after a few weeks. however, my free t4 was always in the mid-to-upper range.
i would ask the doctor why he thinks the free t4 is dropping. could it be dropping as a compensatory situation from high free t3? you definitely should get free t3 labs drawn. i'd get them done asap so that you can see what's going on...especially with your ekg results and because you increased synthroid...yikes!!
you could have t3 thyrotoxicosis. i had that, and had the doctor not checked the free t3, they would have never known because my free t4 was normal.
what were your lab values before you started synthroid?
I don't remember my results when this first stated other that my TSH was 4.33 and my antibodies were greater than 1000. My holter monitor showed heartrate fluctuating between 45-156 beats per minute! I have to see a cardiologist tomorrow. I don't know what to do anymore! I am so sick. I have at least 7-8 bouts of severe diarrhea daily and am constantly lightheaded, hot and nervous on top of the tachycardia. Does this sound like T3 thyrotoxicosis? What do they do for that? I wish they would just take the thyroid out and leave me hypo if I am heading that way anyway. This is no way to live!
i would really ask your doctor to run your free t3. if your free t3 is high, the doc may change the course of your meds. he may want you to stop until the free t3 normalizes.
when i had free t3 toxicosis, i was hot/sweaty, nervous/anxious, diarrhia (and when i had the urge to go, i had to RUN to the bathroom), couldn't get to sleep because my heart was pounding so hard, had arrhythmias and tachy, and had a feeling of wanting to crawl out of my skin. and when i was nervous or after i ate, my heartrate was easily 150 +.
I agree with mtkst13 - I'd get FT3 done asap to see what's going on there. I'd definitely stay at 50 until you feel less hyper. I can't tell you how long that will be...you have to judge by your symptoms. I think you should also ask your cardio for something for the tachy. You may even have to back off the levo a bit to settle things down.
I spent a year with a PCP who kept saying my tachy wasn't related to thyroid meds. I don't know where some of these doctors have been. At my last increase, my endo wanted to go from 75 to 88...I said no, too, and we settled on 81.5...I'm so glad I didn't go along with him.
I think you're the victim of too aggressive an increase schedule (for you). If your FT3 isn't high, that would confirm it.
Ok I I went to the cardiologist and my heart is fine! Whew what a releif. He basically said that my thyroid is causing all my grief. He is starting me on a beta blocker temporarily to relieve the tachycardia and he also said it will help with the anxiety. I just hope I can tolerate it becaue I am VERY sensitive to medications. Also he is running a full thyroid panel including a Free T3. Please pray that I get the answers I need. Thanks to everyone especially goolarra and mtkst13 for everything. I don't know what I would do without this forum. I truely believe that unless you have gone through thyroid hell you wouldn't understand. God bless to everyone dealing with thyroid problems!
thank goodness. that has to be a big weight lifted off your shoulders.
it's funny that when you look up hypothyroidism, it says it's easily treatable. now that i've gone through this and have read about what others are going through, i find that statement to undermine and trivialize the condition. it bothers me a little.
hopefully these new labs will shed some light on what's going on (free t3) so that you can get better soon. and if the free t3 is normal, maybe the dose increases have been too aggressive for you. everyone is different. i tolerated no meds to 88 to 112 fairly well, but i definitely had palpitations for several weeks. i know goolarra is very sensitive to dose increases, and you sound very similar to her.
keep us posted. i'm anxious to see your latest labs. take care. and remember to blame everything on your thyroid! ;)
For so many people, it is easily treatable, though, don't you think? We here on this forum are the exceptions to the rule. I know a number of people who just pop their pills every day and go about their life as if nothing's going on. Sometimes I feel bad for people who are undiagnosed or recently diagnosed and get on this forum. I'm sure they feel like everyone goes through meds nightmares, flip-flops daily from hypo to hyper, etc. Really, we are the tip of the iceberg. Some people do have a seamless transition onto meds and meds regulation. Or do you just think I've been being told that I'm whacked for so long that I'm beginning to believe it? ;-)
it's great that there are meds to help. i can't imagine what happened to people before meds! so, in that regard, the meds help a lot.
my frustration is that people who do not have thyroid issues dismiss people with thyroid conditions, and because it is supposedly easily treatable, it's not taken seriously. like, "oh, it's just your thyroid...no big deal" mentality. therefore, non-thyroid illness people don't realize and sympathize with symptoms. when i mention thyroid to my husband or mom (who's a nurse so she should know better), i feel like they roll their eyes like, "oh boy...not this subject again!"
i guess i need to get over it. it's just frustrating. but, yes, overall, thank god for thyroid replacement meds. who knows where we'd all be without them!
I understand what you're saying. We definitely don't get enough respect. I just feel bad for people just starting out who look at us and think they're about to enter the worst nightmare of their lives Lots of people don't have our miserable experiences. Maybe if someone tells them it's "easily treatable" they'll believe and it will become true (self-fulfilling prophecy). Enough philosophizing!
the waiting is tough when you start treatment because you want to feel better and lose the weight and etc, but it takes awhile. patience is so important, but it's hard to be patient when you have a yo-yo of symptoms. and then you forget what "normal" feels like, and then you think, "well maybe this is normal".
for me, treatment has been 85% effective. i feel a lot better. i have periods where i feel hypo and periods where i feel hyper. it's strange, but i'm getting used to my "new normal". i'm definitely more in tune with my body...sometimes that's a good thing and sometimes it's not.
today is my first day of switching from 112 to 88 of synthroid. we'll see how things go. i'm optimistic. if i can have my thyroid hormone production restored, i'll be ecstatic. i'm keeping my fingers crossed!!!!! maybe i'll get back to my "old normal".
Very interesting...we don't hear a lot from people with temporary thyroiditis like silent or DeQuervain's (which is what I was convinced I had for a while, but no, it's Hashi's). If your thyroid is coming back to life, that might explain your hyper/hypo swings. I imagine it huffs and puffs for a while before it evens out and gets back to 100%.
I know what you mean about being more in tune, and it sometimes being good and sometimes not. If I sleep well, I'm afraid I'm getting hypo, if I don't, I think I'm overmedicated. Tired is never just tired...it has to mean something!
I really hope your thyroid is coming back...lots of luck with your decrease!
"well maybe this is normal". When I read that in your comment, I thought..."wow, there are people who truly understand what I am going thru" and I know that is true from spending so much time out here with you all, but last Sunday, I had this very uncharacteristic mood swing that took me so low. I told my husband at one point that everyone says that thyca is so treatable and I should be fine, but part of me just wondered if it was the beginning of the end. I was really down and for just a short time, I thought "this is me for the rest of my life." It was a sad moment. Then it went away and I got back to a more normal me. Well, you know, hypo normal. : ) Up, down, tired, not so tired....But I swung back up nearly as quickly as I got that down. Honestly, I haven't done that before. Thank God. I don't want to feel like that ever again.
hang in there. thank god you have the most treatable cancer, but that doesn't mean that you're not scared, anxious, questioning why me? and then on top of that, you have hypo yo-yo. you want normal back, and you'll get there. it'll take time but one day you'll say, "hey! i feel pretty good. i guess i'm back to normal...a different normal, but that's okay!" i had a really bad anxiety issue for a long time. i didn't think normally, and i wanted so badly to be normal again. it took time, but i'm finally okay. i know you'll be okay too.
my thyroid should be healed...for now. i feel that i've had flares since i was a teenager. i've always noticed a strange pattern of symptoms: lose weight, anxious, leg hairs growing really fast, mean eyes, can't fall asleep, pounding heart....followed by puffy, tired eyes, leg hairs suddenly stop growing, gain the weight that i lost, severe breathing problems, sleep walking/sleep hallucinations. eventually i return to normal, but eventually the cycle starts again. i've never had blood tests done during these phases. any time i went to the doctor with symptoms, i was told it was anxiety. so, as you said earlier, self-fulfilling prophecy....i have an anxiety disorder for which i take zoloft.
we shall see what the future brings. i guess i want the scenario above to be true because i was dismissed so many times by family and doctors. it would make me feel validated and sane!
I think the problem is that thyroid research/treatment is in its infancy. We'll probably someday find that "normal" is a much wider range than we currently accept. In your or my lifetime...maybe not. In the meantime, it's better than the alternative...no treatment at all. I think, as mtkst13 said...we are more in tune to our bodies, and somtimes that's good, and sometimes it's not. Too much introspection (of which I fully admit I am at times guilty) is not so good. Sometimes we're just tired because we're tired, sometimes we're just down because we're down. It's not always more than that, but we tend to make it so. We can't blame the scapethyroid for everything!!! But it certainly does throw a wrench into the works at times, doesn't it?
OK I only got part of my labs back. They are as follows:
TSH 2.750 (previously 2.630 1 week ago today)
Free T4 0.85 (previously 0.82 1 week ago today)
I am still waiting for the Free T3 which can take up to a week. Based on these results I am obviously not overmedicated. So would you believe my symptoms to be medication sensitivity or a hyper swing from Hashi's? I don't know what to do about my medcation doseage. I am soooo confused!!!!
I still really want to see the FT3...try to get the range, too.
I still feel as I said above...I think your increases have been just too aggressive. You can be hypo as hell according to your bloodwork, but if the increases are too fast and furious, you feel hyper. The Hashi's, I'm sure, contributes its bit to the hyper symptoms, too. However, I'm voting for meds sensitivity.
I'd give myself a chance to stabilize at 50mcg...increasing is just going to make you more miserable.
Thanks. I appreciate the encouragement. Just so you know. This was a great day. I hope to have many more of these. : ) : ) I am not tired and falling asleep. I had some energy and my mood is outstanding. I love days like this one. Keeping fingers crossed for tomorrow.
I love the terminology "scapethyroid"...I easily fall into that trap. I'll work on it.
Yeah I FINALLY got my results of my Free T3 and they are 305 (230-420). Normal right? So now what do I do? I decreased my meds myself and although I am not as bad as I was I am still having hyper symtoms and more hypo!!!
I haven't spoken to my endo yet. I just called the lab and got my results myself. I am thinking of asking to try a different thyroid med beacuse I just found out through someone else's post that synthroid contains lactose and acacia. Well I am lactose intolerant (that could explain all the problems with the diarrhea) and also the acacia from what I read is in the family of trees and grasses. I have so many severe allergies both indoor and outdoor that I require 6 allergy shots a week. Do you think the synthroid could be aggravating my symptoms? I am at a loss as what to do.
I agree with mtkst13 - I think you've just increased too fast. Of course, the problem is that when you have to slow down because of sensitivity to the meds, you're going to remain hypo for longer. Are you on the beta blocker now? If so, is it helping the cardiac symptoms? I'm afraid it just takes patience. After my last increase, it was a good two weeks after I backed off to my previous dose before my hyper symptoms went away entirely...probably a bit longer, and my endo had me not take anything for three days before resuming the old dose.
I see from your labs why your doctor wants to increase your meds...eventually that will have to be the case. But he can't just totally ignore your hyper symptoms in the process...that's cruel and unusual punishment!
If I recall correctly, you were having hyper symptoms at 50 before the increase to 75. Is that correct? You might even have to back off further to get the hyper symptoms under control.
what do you think about the ingredients in synthroid adversingly affecting me? I kind of on my own (i know this is not good) have stopped my meds for the past 2 days and and will resume at a dose of 37.5. Unfortunatley I am still having some hyper symptoms but not like before but I am soooo tired and achy! I now have constant dizziness and visual problems and have to have an MRI tomorrow. If it is not one thing it's another. Have you ever had dizziness with your thyroid? I was given a prescription for a beta blocker but ahve not yet started it. Ever since my stopping the meds my heartrate doesn't go above 90 and isn't pounding but I do have them on hand.
it does contain the ingredients you listed above. maybe with your allergies, you digest it differently that makes it more potent or something? i would ask your doctor if it could cause an issue.
i still think you need to take it more slowly. i had palpitations when i increased dosage. i didn't have any other hyper symptoms...just the heart arrhythmias. it subsided after a few weeks, and then of course, my heart rate became too slow. you never can win!!
our bodies/hearts must be very sensitive to increases of t4/t3 because it really is a common side effect of having a med increased. unfortunately yours is a lot more troublesome. your body needs a smaller increase and needs a little longer to adjust to the dose.
I am confused. I just got a call from my endo and I voiced my concerns of being overly sensitive to the med increases and the possibility of reacting negatively to Synthroid because of the lactose and acacia. He has advised me to stop the synthoid completely until my next appointment on June 15th to cleanse my system of the meds. Does this sound right? Will I be ok?
Since you're still on a very low dose, and not tolerating it, I think it sounds like a good idea. People suggested to me that I do that since I had side-effects, but by that time I had spent about a year painfully increasing my dose, and I just couldn't face doing it all over again. Your hypo symptoms will probably continue to increase for the next two weeks that you won't be on meds. But starting with a clean slate and trying something else is better than suffering through all the hyper symptoms. There are pharmacies that will prepare thyroid meds without any fillers. Also, if I were you, I'd research the different levothyroxine brands to see what their fillers are and how they might affect your allergies. Best of luck.
I have hyperthyroidism and have had it for years untreated. I went through 2 pregnancies and nursing with this so i didn't take meds. I had the worst symptoms. Maybe some type of relaxer might help. I never took anything(i'm not into meds) but a couple months ago my heartrate was up to 145 and had to go to the hospital they gave me ativan(awesome) I refuse to take things like that but i think i'm starting to come around. When you need it take it. Try to get a mild dose of of something like xanax or ativan. Alot of the symptoms you feel from thyroid problems are brought on by anxiety. Hope that helps.
From your message on May 18: "hashitoxicosis is when your tsh is low and your free t3 and/or free t4 are high"
So, is this the norm or exception? My last test scores were:
TSH - 0.05 L (0.40-4.50)
T3 Uptake - 39 H (22-35)
T4 (Thyroxine), Total - 18.2 H (4.5-12.5)
4 hour uptake - 16.2% (5-15%) Feb 26 ... 4hr uptake - 13.9% (5-15%) May 21
24 hour uptake - 24 hour uptake - 51% (12-35%) ... 24 hr uptake - 41.1% (12-35%) May 22
"Today's findings are most with an automomous functioning region within the left upper two-thirds of the thyroid gland resulting in relative hypo-functioning of the right thyroid and the lower one-third of the left. The asymmetry is unlikely for Graves' Disease. Eitheciology would ameable to radioiodine ablation. No focal nodules or cysts are evident. Slight increase blood flow is seen in the left thyroid lobe when compared to the right. Hyperemia in the left thyroid lobe could represent early thyroiditis."
Endro says Hyperthyroidism due to autonomous nodule. Could it still be hashitoxicosis or as the doc says?
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