GabeAugust 3, 2013 at 6:01 amPost count: 182
Hi Amy. So sorry you’re still struggling. Good and bad news from your doctor….darn. I agree with Sue about T3….my endo is against introducing this too soon after TT but is willing to try after getting to the right T4 (synthroid) dose. I made him add T3 check to my labs because if I am not feeling really good at 6 months I want to know if my body is properly converting T3 so then a decision can be made about supplementing with T3.
This sucks for you. I’m so sorry….. KarenSueAndHerZooAugust 3, 2013 at 9:32 amPost count: 439
Crap…. the idea of you skipping your pill tomorrow really scares me and bothers me but of course it’s your body and you know it better than anyone (including the doctors). But something about not maintaining “consistency” really scares me. How about a compromise….. can you take half a pill tomorrow? That being said, I really don’t think you will feel the results (if any) in time for the party…. the half life of thyroid meds is very long.
So in a nutshell, you’re having both hypo and hyper symptoms, right? I wonder if it’s time to switch to Synthroid (instead of Levothyroxine)?
Damn, wish we didn’t have to be our own doctors so much with this disease…. it really adds to the pressure and anxiety knowing that there are so many variables and not knowing which way to go.
If it were me (and we are NOT doctors, as you know) I would stay with the same dose for a little longer (I believe there are always about 7-10 days worth of symptoms when changing doses) and take the beta blocker to keep the heart rate under control. Just thinking out loud…. of course I’m not qualified to give that kind of suggestion.
Do what you feel is right, but keep in mind that freaking “patience” is supposed to be key when changing treatments. I forget…. how long ago did you increase your dose?
SueamosmcdAugust 3, 2013 at 11:37 amPost count: 231
Hi, Sue and Karen–it’s been 9 days since the dose increase and the HR and palpitations are getting worse. I just woke up and feel okay. Haven’t taken the Levo yet. I guess I’m just feeling desperate. I’ll call the on-call doc and see what they say.
I don’t understand why my Free t3/4 is staying the same, but my TSH is going up. I seem to be converting T3 fine, they are basically the same since surgery. I’m an enigma wrapped up in a conundrum.
I haven’t felt this bad since starting the Methimizole last Sept. Finally switched to PTU and felt a lot better, but what the hell now? I’ve been on Levo before, around 4 years ago when I was feeling hypo. I tolerated it fine then. So expected I would now.
Wondering what taking out the thyroid does to all the little ways it controls the body. Ther’s got to be more to it than just the measurable stuff. I’ll let you know what the doc says.
Thanks for being here for me.
Hugs and love, AmyamosmcdAugust 3, 2013 at 12:19 pmPost count: 231
Okay, just spoke to the on-call doc. I was a weepy mess when talking to her, so I’m sure she thinks I’m nuts. She was nice, though. She is recommending taking just 50mcg of Levo until Monday when I can talk to my regular endo. She said that will take care of the HR and palpitations. So, I just took it. We’ll see how it goes. She said it can take time to find the right dosage. It may need to be a combo of mixed dosages. I’m glad I called. She also said the elevated TSH can be from not taking the Levo at the same time of day or on an empty stomach. I did have to change when I took it while camping for 11days in June/early July because I was getting up at 8 or 9 am instead of 11am or noon. I’ll bring that up with the endo.
So I’ll update again after I talk to my regular endo on Monday. Going to go out and enjoy the party this evening and let myself get distracted from all this.
Thanks again for putting up with me.
AmySueAndHerZooAugust 3, 2013 at 3:04 pmPost count: 439
Glad you called, too, and glad you’re going to talk to your doc on Monday…. something has to get better soon….. you’ve been through enough.
I’m real new at this TT and replacement stuff but I know my surgeon stresses (and sent me home with written sheets about) “SAME / SAME / SAME!” Same med, same dosage, same time! I don’t know exactly how critical that is yet from personal experience (I set my alarm every day for 6:30 a.m., take the pill, and go back to sleep) but everyone else seems to think that consistency is very key to feeling well. I’m sure you do this but I just have to ask…. your calcium supplements (or other supplements) are always taken four hours before or after your Levo, right?
Hope you’re having a decent time at the party tonight. Sometimes I wonder if I would feel better if I would just get off my butt and get back to my normal routine instead of “taking it easy” but in my case it’s only been 2.5 weeks so I’m gonna be a slug a little while longer.
SueGabeAugust 5, 2013 at 8:49 amPost count: 182
Hi Amy,,, hope you get some answers… it is strange that your having these extreme reactions. Our bodies are a mess. Please share what your endo recommends. I’m very curious since I just got my 9 week labs and I’m looking forward to what’s next. Had a little backslide this weekend myself and not sure what the heck caued me to be a crying basketcase. Weird.
I hope you get some relief real soon! KarenamosmcdAugust 5, 2013 at 12:25 pmPost count: 231
Okay, I heard back from the endo’s nurse. I’m to get my labs drawn today and in the meanwhile, stay on the 50mcg of Levo the on-call endo put me on. I’m to take 25mg of Atenolol a day. They’ll get back with me on the labs, and if the labs (I’m assuming the TSH) is still high, they want me to see a cardiologist. Which kinda blew me away. I’ve never had heart issues until I got Graves’. My labs aren’t stable yet, so I don’t know if they are dismissing the dosage issue or what?
I took today off, will run in and get the labs drawn and they said they’ll have the results tomorrow.
I don’t know what I was expecting, but maybe a little more empathy? I feel like they think I’m nuts, but I’m probably just feeling too sensitive right now.
I’ll let you know what the results and next plan is.
Thanks Karen and Sue!
AmyRaspberryAugust 5, 2013 at 1:05 pmPost count: 273
Hi Amy, sorry to hear things are still so tough, HUGS to you! I’ve found that I can have more heart symptoms while being slightly hypo as well as hyper. So your high TSH might very well be telling you that you need more levo not less. My endo says she doesn’t like to see a TSH above 2.0 for her patients. Have you considered consulting another endo for a second opinion? I’m glad your iron got authorized I hope it helps – many (who aren’t quacks) believe low ferritin still can affect a person’s energy but my money is on the thyroid for the dramatic symptoms. I feel for you – I’ve had so many nights of frustration wondering if I’ll ever find real wellness again while the docs think my tests look okay. We just have to keep at it and not settle for less.KimberlyOnline FacilitatorAugust 5, 2013 at 2:54 pmPost count: 4286
Hope that you can finally get this sorted out! Having unstable levels can certainly affect the heart, but if this issue continues, it probably wouldn’t hurt to see the cardiologist JUST to be on the safe side. It sounds like you will need to be persistent in reminding your endo’s office that you are still trying to get levels stabilized post-surgery…you *definitely* deserve some empathy!GabeAugust 6, 2013 at 5:00 amPost count: 182
Hi Amy. I’m not a doc (obviously!) but 50 mcgs of Levo sounds very low. I went from 50 (TSH at 25) up to 100 (TSH at 7) and was just upped yesterday to 125 since I’m still not within ideal TSH range. My FT4 and FT3 were within range. And even while hypo these last 9 weeks I can still feel some heart palpitations…nothing like what you have. So I agree that you can still have heart symptoms while hypo. Better safe than sorry so a cardiac checkup may put your mind at ease. I personally think you’re still hypO. I’ve not heard of anyone post TT that’s on such a low dose.
Will be curious what your labs say. It’s heartbreaking that we all walk around with these feelings, anguishes, symptoms, and anxiety and just cannot get anyone to truly understand how helpless and frustrating this is almost daily. Damn and double damn. (PS. I have much stronger words in my vocabulary that I would prefer to use but would probably offend some and get chastised for inappropriate forum behavior! Haha)
Hugs to you,
KarenSueAndHerZooAugust 6, 2013 at 7:11 amPost count: 439
Crap! (I, too, would rather put a much stronger word in there but will reserve that for my verbal expression of frustration). I am sorry that this probably frustrates you and confuses you even more but I’m really frustrated by the new, lowered dose of Levo. I can’t remember: is this coming from an endo you’ve known for years and that you trust and feel comfortable with? You probably don’t want to throw any more opinions or doctors into this mix but I can’t help but wonder if an appointment with a brand new set of ears and eyes (Endo) would be worth a visit.
Please don’t worry about the suggestion to see a cardio — just do it and get the peace of mind that will come with it. Then you can check that off your list and go back to getting your hormone levels in check, either with the old doc or a new one.
Damn….. so unfair. You’re probably sick of hearing this, but… hang in there – it has GOT to get better soon!!!
Thinking of you……
SueamosmcdAugust 6, 2013 at 11:43 amPost count: 231
Thank you all for your support! It’s been so nice to not go through this alone. I wish I had not waited so long to get back on the forum! You guys rock–seriously!
So I got my labs back:
TSH 0.823 (0.34-5.60)
FT3 3.1 (2.2-4.3)
FT4 0.88 (0.57-1.25)
So this explains the increasing heart palpitations since they upped me to 88mcg. I sure do swing fast and hard. No wonder I’m miserable!!
I am actually starting to feel better since yesterday. No sure if it’s the Atenolol or the 50mcg dose of Levo. Right now I don’t care. I have energy and I’m not sleepy. I slept pretty well last night. Only woke up about 6 times instead of every hour!
I spoke to the actual nurse (not the medical assistant) and she was sooooo much nicer and compassionate!! My instructions are to get my labs drawn again in 3 weeks, stay on the Atenolol and 50mcg of Levo. She does agree 50mcg is a very low dose, but right now I’m up for whatever it takes to get rid of the palpitations and elevated heart rate and ANXIETY! I’m sure I’m going to be the patient that is hard to keep stable. She did say it’s hard for most patients to stay on the same dose long term, it usually gets tweaked, but not this often.
At this point the cardiologist is off the table, since the labs had changed. I’d rather wait. It seems like I spend all my free time taking either myself, or my oldest son, to doctors.
I’m not ready to get a second opinion yet. I fired my previous endo because he refused to give me the name of a surgeon when I wanted a TT over RAI. I had been with him for 3 years or so. This one, it’s only been maybe 6 months. So I’m willing to give it more time.
Thanks again for being my cheerleading squad! I appreciate all the not-spoken swear words! LOL!! I’ve been using some choice ones myself!
I see some new posts on some of the post-TT journals. I have to run, but will check those and post to them soon.
Love you guys!
AmyGabeAugust 6, 2013 at 2:07 pmPost count: 182
Hi Amy. Good news. Wow you do swing hard and fast. Amazing. Sounds like the low dose is working for you. That’s great. Just goes to show you how very different we all are and how we don’t react the same. I can ‘feel’ your sense of relief and a little more spring in your step today! That’s great news….hooray for you.
Cheers, karenamosmcdAugust 7, 2013 at 4:42 pmPost count: 231
Well, good news is my energy level is up. I think the Atenolol is helping keep my heart from going crazy, which has given me a boost in energy. I’ve been taking between 25 and 37.5 mg a day. Tiday’s my day off and I’ve been running around doing errands and now going to work out in the yard. Last night didnt sleep well, but I seem okay.
My insurance denied the IV iron infusions, saying there could be other reasons for my lack of energy. I’m not going to fight them right now. If my thyroid labs ever stabilize and I’m still tired, I’ll look into it more.
Just having a couple days this week where I’ve had energy makes me feel a lot happier, so I’ll just go with the flow for now.SueAndHerZooAugust 7, 2013 at 8:40 pmPost count: 439
Damn it – I can’t stand hearing that someone isn’t being treated or given a procedure or medication because “insurance didn’t approve it.” Really infuriates me! It’s not bad enough that we have to go through the hell of being sick but we then have to do the red tape and jumping through hoops to get a possible solution approved by insurance? I would think (and hope) that once a medical professional suggests something it should be a no-brainer. ugh…. don’t mean to get you fired up — I’ll stop.
I’m so happy you felt better today and had a fairly “normal” day…the kind that most people take for granted. Lord knows we’ll never take them for granted!
I guess all we can do is try to live in the moment, not regret the way we’ve felt in the past and not worry about the way we’ll feel in the future. Here’s to many wonderful “todays”.
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