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in reply to: In a rush? #1169585

Hello, I decided to get back on here. I am doing well overall, I had RAI 3 years ago now and it was a sucess, I have been on 150mcg of synthroid since. My endocrinologist seemed happy with my TSH which stays around 2. I felt pretty good from a thyroid standpoint, although of course other little health things go on but those seemed to work out or be resolved over time. Lately however I have been feeling hyper again. I had lost about 12 pound this summer through intentional dieting after I seemed to be having prediabetes. I am going to get my labs checked but does losing 12 pounds make you need a slightly lower dose of synthroid? Do people notice they need a change in dose when their weight goes up or down?
I feel like I am mildly hyperthyroid again. I asked all my doctors over the years and because my TSH went so high after RAI 3 years ago (up to 97) they do not think my thyroid could grow back but of course when I feel like this my mind starts going to that scenario…especially when I start waking up early and hungry and not feeling all that tired. I guess I just have to see what the labs says and talk to my doctor. I just hope it is due to the weight loss and not that the weight loss is due to something growing back or re-activating…I wish they would make a meter for home use to check TSH every 4-6 weeks. Thanks for listening!

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in reply to: In a rush? #1169583

Well I am still struggling I guess. It has been 5 weeks at my newest dose and I feel hyper again. My last TSH was 9 something and they bumped me up to 150 which was an increase of 12.5mcg. Suddenly, subtly I am feeling back to the way I never wanted to feel again. Can’t drink coffee again, up too early, up too late- not good-anxious. I called to ask for early labs and they said they have to look into it because it is too early. So the nurse will call back I guess. But I don’t want to keep taking this dose for another week because it is scaring me to get hyper again. Also I am getting out of proportion about this- just because I am scared. I hate being hyper so much- I don’t know why exactly but it just scares me to go back into that state. Anyway, I am hoping the nurse will call back and say it is okay to go in and I am trying not to take it so seriously but I do right now. But if I write it here then my mind can hopefully just let go of it and focus on the good things. But I think hyper brains have trouble doing that, or mine does anyway. I am trying to believe even if I am a little hyper it will be nothing like last summer when I had undetectable TSH and muscle wasting and weakness. I don’t seem to be getting that and I am doing what I can to head it off at the pass. Maybe I just need to be a little hypo to feel normal at this point. Wish I could sleep in on my day off today!!

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in reply to: In a rush? #1169581

Another update- it has been 8 months since RAI. After 6 weeks on 125mcg my TSH has come down to around 18. So my doctor said to go up to 137mcg. I weigh 66 kilos/145lbs. According to what I can find 1.6-1.8mcg/kilo is the usual dose. But it says the range can vary a lot, so I guess I am wondering what the avg post RAI person ends up on. Somewhere else I read 1 mcg per pound? I would guess there is no average but it seems like I am getting there…. Also, does anyone know if you exercise more can that make you need more levothyroxine? My doctor seems to think I am needing more than they thought I would but I have been trying to run for exercise again (just once a week and not very far) which is what I used to do waaay back in the day before I got hyper. Anyway I feel better than I have in months- much less cold, more clear mentally, more energy, sleep better in general…I think I feel normal. I mean I still have ups and downs and tired at times, et cetera but just like life before graves kind of… Is that possible with TSH of 18? Am I deluding myself? Does it really matter if I am?

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in reply to: In a rush? #1169579

Another update, I went to see the doctor today for a persistent sore throat (4 weeks) and had my labs rechecked early due to the fact I have been feeling mildly hyperthyroid- mainly just diarrhea again which was one of my first symptoms of Graves. Also I have lost a few pounds again. My TSH is still trending down, now at 42 (was 70 a few weeks ago). Did not get my T4 value as he said it would be posted online but it is not …yet. My liver enzymes are elevated which is frustrating because they were borderline getting back to normal 3-4 weeks ago. Anyway, it can be normal when hypo to have elevation. I have had elevated liver function tests when I was hyper and hypo now and no liver problem has been found after a very extensive, expensive investigation this summer.

This doctor said I can stay at 100mcg or go up to 125, he recommended going up but said he understands if I want to wait and recheck so I said I will wait. I feel so nervous about going up too fast I hope I am not being ridiculous…
This is hard. I think the feelings I had this summer that everything with my health was so out of control have come back. This is the emotional side of having a medical problem.

Good things now that are different then this summer: I know I have graves now, I have had one of the recommended treatments (RAI) and I am on a path to getting stabilized with the synthroid. But those summer, hyper, feelings came back today- I really do not like going to the doctor so very much…even though they are there to help me and it is just part of life, et cetera. I feel very vulnerable and stressed by it. Even just getting my blood drawn takes me back to those feelings. It is not unbearable or anything but realizing I have the feelings even if they are not exactly rational is good to realize. I am doing so much better- I am stronger and am able to tolerate the cold better. I can stay awake in the evenings and think better than 2 months ago. Anyway somewhere I read it takes a year with a major health thing to get back to where you were. Why am I so obsessed with time and getting somewhere different? Not sure but I am ready to let it go for a few weeks if I can and just focus on other aspects of my life. So hopefully writing this will help me let it go!!

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in reply to: In a rush? #1169578

Thanks Shirley, I talked to my doctor and told her my concerns and she agreed to prescribe 100mcg instead. I feel a lot better with that kind of increase. I think I am glad I went in though and had an appointment even though the doctor is willing to manage things over the phone. It is hard to talk through the nurse and by being there I felt like it made a big difference as I could explain my concerns, hear what the doctor thought, et cetera. Also my T3 is still low, which is good to know. So anyway, I will start 100mcg tonight! I think I feel pretty normal already so hopefully I am not overshooting but it helps to realize the first 6 weeks of replacement did feel very gradual in the amount of change- kind of week by week differences so hopefully that is all that happens. I am ready to have some normal labs someday! I am sleeping so much better these days it is amazing. I really think all the weird patterns I had a few weeks ago were thyroid related. I am back up to approx. my usual weight, I do think my muscles are still weak/somewhat atrophied but I can chew my food without noticing muscle fatigue in my jaw and climb a flight of stairs normally. I am warmer in general but still colder than everyone else- can’t drink anything cold/icy. It has been interesting and I will keep posting when I can. Thanks for reading this far!!

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in reply to: In a rush? #1169576

Hi – just got my labs after six weeks on 75mcg synthroid. My TSH has gone down from 97 to 70 (still sky high) and my Ft4 has gone up from 0.3 to 0.8 which is apparently in normal range now. My doctor wants to double my dosage to 150mcg. Does anyone know if there is a formula for that? Because it seems like doubling it might be kind of crazy-I do not want to get hyper. I am going to try to look up ATA guidelines I have heard mentioned…I feel like I am better than in a long time and I do not want to go hyper….argh.

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in reply to: In a rush? #1169571

Another update…I have been on synthroid 75 mcg for almost 4 weeks now. After 2 weeks I began to feel better. This past week I have been sleeping a lot more normally and consistently. I think I am still hypothyroid…I am still very easily cold but it is better than it was. I also have very little appetite which is not normal for me. I have to just eat something at meal times because I feel like if I don’t that can’t be good for my body but I do not feel very hungry. I am super weak in my muscles still. It is not a normal tired muscle feeling but a strange easy fatigue/crampy feeling. It seems like I do not build any endurance by doing things (like stairs in my house- I just don’t seem to build up any endurance) But I am able to do the things I need to do for my job and my family but not exactly as much as I wish I could do or used to be able to do. I feel like my cognition is not where it was previously- I think slower and I keep a lot of lists. So I am trying to be patient. I have labs ordered for 2 weeks from now and my family medicine doctor said she can manage the synthroid. I think she is much more sensible/practical person who I can work with. Is it better to try to see an endocrinologist? I feel like I should be straightforward from now on- just check the TSH, adjust the synthroid and hopefully not need a lot of monitoring at some future point. But then I see other people who had hyper come back et cetera…so I think maybe I should be looking for an endocrinologist that I could trust if and when I might need one again. Oh well, I’ll figure it out. Anyway, just wanted to say I am feeling better and that posting here is helping me so I am going to keep doing it until I get kicked off for a too long thread. ” title=”Wink” />

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in reply to: In a rush? #1169568

I have been on synthroid for 10 days now. Today is the first day I felt like I am getting back to my normal self for sure. Also got more sleep this weekend then I have in quite some time. I feel like being hypothyroid has really messed with my sleep. Not that different from hyper really in some weird way… I have been crashing hard very early and then waking very early and gotten into a vicious cycle with that. But this weekend I was able to get back to sleep and so today I the first day in some time I have made it without a nap until 8:30 PM!! Wow!! Still pretty cold sensitive-lizard like. I also have been monitoring my blood pressure and pulse and noticed my BP is back down to normal range and pulse is up to 70-80 which is normal for me. Today I felt much less random muscle cramping as well. Although my muscles are crazy weak- even chewing seems to wear out my jaw. But I have faith I can build it back up ” title=”Smile” /> Appetite is low, weight is piling on I think I am almost back to my pre-hyper weight, just hoping not to have to buy yet another set of work pants this year. I guess since it is only 20 days to go in 2011 I am probably safe- but we shall see!!
I got some meditation CDs at the library to listen to if insomnia strikes and I am writing on my calendar every day when I take my synthroid because I want to get my level back to normal "in a rush" as usual. I even like to rush when my TSH is sky high. I just rush very very slowly.

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in reply to: In a rush? #1169567

Yeah, so I ended up going to the ER after freaking myself out. Synthroid made me WIDE awake but I definitely felt that first dose. And it felt—-really good!! And then a little scary. Like hot, too fast, cold again…what is going on? Plus a nagging cough I haven’t been able to kick and can’t sleep at all.
So I put went to the ER and got it checked out by another set of doctors and I feel better. I am going to be alright, my TSH is now 97 but I am going to get thru this and just keep on learning that I am tougher than the sum of my parts. Synthroid 75mcg, just keep doing everything I am supposed to and wait for the next predictably unpredictable turn in the road. Just not sure how to sleep but eventually I will and that heals a lot of problems. So good night.

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in reply to: In a rush? #1169565

Wow! So after calling the lab, the doctor, emailing the lab and talking to the nurse several times, they finally got my result to my doctor. My TSH is 89. Or it was 89, 10 days ago when the blood was drawn. Could be higher now since it has been 10 days… My doctor says to take 75mcg synthroid starting today but to look out for tachycardia and other scary side effects. Did anyone get that hypo and how does it go. I asked can I just take half a few days and he said no, because he would normally think my dose would be 137mcg so he is already halving it. I am not feeling that great about my doctor and not trusting him. I have an appointment with my PCP in 2 days so I am thinking I will just take 1/2 dose tonight and tomorrow and see how it goes. I need a second opinion and reassurance….
I need to be healthy and functional and not going to the ER with rapid heart rate. He said that if I were elderly he would give a lower dose, but since I am young and healthy I will be okay.
Well, I feel elderly darnit, so that is my reasoning. He is mad at the lab and I am mad at him. It is crazy. Any advice? Anyone have similar high TSH and do just fine starting synthroid? I’m scared and not exactly thinking great. But very relaxed. And cold. Okay I am going to go hug my kids and husband and think happy thoughts. Like I am finally going to start feeling warmer soon. My face is puffy,too. Bleh.

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in reply to: In a rush? #1169563

Still waiting for lab results drawn last Friday (7 days ago). Due to the holiday it is taking awhile. Glad I did not wait, a little worried the doctor will still do nothing since he seems to be old school in some weird ways. Back up plan is to see my family medicine doctor and try to convince her to medicate me (ie give me some synthroid) if he will not. Feeling very mentally slow this week, relaxed kind of apathy that is kind of weird and not my usual style especially after the hypervig. of hyperthryoid state this summer. Got warmer clothing, taking power naps and drinking hot tea a lot. Time seems slow…maybe it is just the thanksgiving stuff…
Just wondering is it super dangerous to wait for TSH to go up. Like if the doctor says my TSH is only 3 and does not check my Free t4 because he only ordered it as reflex ft4, I am supposed to wait 6 more weeks to recheck. That seems bad, right, but I would not be like in mortal danger, would I? I would like to hear what can happen if I wait if anyone did that. How bad can it be? Is it dangerous or why are you advising to be wary of it?
Sorry if this is not making sense.

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in reply to: In a rush? #1169562

Yeah, you know on second thought, I think I am just being dumb/passive aggressive if I wait to get it checked. My doctor is kind of dumb/out to lunch but I don’t have to put up with it. I still have the order slips he originally gave me to check it every 4 weeks and it has been actually, I think 5 weeks since the last check. His new slips like tacked on an extra week to wait which just is crazy!!
So 9 weeks ago my TSH was undetectable and FT4 was 2.0. 5 weeks ago my TSH was 0.09 and FT4 was 0.9…so if has gone down another 1.1 points it would be… – 0.2 right ” title=”Smile” />That could explain the coldness.

I doubt he will even notice or care if I use the original order that he wrote to get it checked now! I am so darn cold tonight and I know part of it is that it is colder weather…but seriously…it is the exact opposite situation of this summer when I was trying to convince myself that the air conditioner was defective, and turning it down every time I walked by….before I was diagnosed.
Thank you for being a wake up call to a very sleepy lady. ” title=”Smile” /> I am not even sure if this message makes sense…I’ll keep you posted. If my numbers are normal I am going to buy an electric blanket.
Good night!

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in reply to: In a rush? #1169559

Another update- I think it is 3 months almost exactly since RAI. Not on replacement yet. My endocrinologist told me to wait an extra 2 weeks (had been every 4 weeks, switched to every 6 weeks) to check my labs for unclear reasons, especially because I told him I have been really cold all the time and wondered if I could just go ahead and start replacement (the answer was no, must wait til TSH is above normal) . He is not very good at communicating and clearly constantly overbooked – time pressured. I am just going to go back to my family doctor for monitoring but am without insurance this month so do it next month. I feel a lot better than being hyper. I am sleeping more- on the weekends a few times I have fallen asleep at 7 or 8pm and been out like a log. It is reminding me of the fatigue of pregnancy (I have had 2 kids). I am drinking a cup of coffee in the AM and a diet soda with caffeine at lunch and a lot of decaf tea to stay warm. Had to buy warmer pajamas because my normal ones were not working, plus extra blankets. I feel my body temperature has lowered. Pulse has gone to 60s- pre Graves was in the 70s usually, During graves was 90-110….

Yoga at night helps me stay awake a little more until a more normal for me bedtime. Then I have vivid, memorable dreams that frequently wake me up from 3-4 am on…also similar to being pregnant. And NO I am not pregnant!! I am asking my husband and family to keep an eye on me because my fear is that I get hypo and not realize it or something, but it seems okay so far, I have energy during the day to do what I need to do and feel my thinking is calmer than this summer.
Weight is not what I was pre graves but my muscles have definitely gotten bigger in my legs just from walking and mild jogging a few times, which is kind of nice to be feeling more like me.

It feels good to write all this down and hope it can help anyone else who is on this journey.

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in reply to: In a rush? #1169557

Just thought I would update- my second round of labs shows that my free t4 is down to 0.9 and my TSH is above "undetectable" for the first time in a long time at 0.09. I have a followup with endocrine in a week or so. I feel okay physically, no longer losing weight. Started sleeping better and dreaming a lot more…maybe catching up? I think I got approved for health insurance- no rejection letter from this new company yet- and I also went to the eye doctor who did not see any thyroid eye disease.
So anyway, I guess the nickname I chose for myself was apt, I am "in a rush" and very impatient to get better but it looks like it (the RAI) is probably going to work…I am so glad I went this route- for now. I will post if I change my mind. Can’t argue with no more crazy hyperthyroid symptoms. Of course, I know I will be complaining about hypo symptoms in all likelihood if they happen to start up. Looking back I really am amazed at how stressed out I was about making the decision. I really believe this illness made me over think everything way more than if I had some other condition, which is something I could not see when I was in the middle of it. Now I feel more like myself again, and it is relief. I hope others can find some solace in that if they are stuck in the decision making process.

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in reply to: In a rush? #1169554

Thanks for the supportive replies.
To review, I had RAI on Aug 18th, so it has now been 6 weeks I think. I had lab work 2 weeks ago and TSH was still undectable and free t4 actually went up a tiny bit. So I am telling myself it is ok, but now I am waking up too early and getting too hot again. I guess I know that it is too soon to tell but I had high hopes that it would be trending down. The radiologist gave me a pep talk before I took the rai about everyone he has treated needing thyroid replacement by week 6 so I kind of got that stuck in my head…thinking that is how it would go. And I lost another 3 pounds. It is weird to be skinny, all my clothes are baggy and I don’t feel like myself-probably because I am not sleeping enough. But I just don’t need to sleep as much it feels like. Anyway, I have been doing yoga and stretching and trying not to overdo it and get some muscles back. I am also applying for new health insurance cause I started a new job and filling out lots of forms about what medical treatments I have had…and feeling like I am going to get denied so that has been bumming me out too. But at least I can hug my kids again and just keep telling myself to be patient, which I can be 90% of the time. Anyone know if it okay there is no improvement yet?

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