[miltomal]

#1169561

I agree with Kimberly. I started on my replacement meds before my TSH moved from being suppressed. My Free T4 and Free T3 went below the range and my endo started me on a small dose of armour. 2 months later, my TSH went above the normal range the lab uses, but i was glad that i didn’t wait that long to start this titration process.

good luck!

[rushed]

#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!

[rushed]

#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.

[Kimberly]

#1169564

Hello – My understanding is that "TSH with Reflex to T4" means that it’s a TSH test, but the lab will automatically run a T4 test if the results are abnormal.

Based on the guidelines that I mentioned above from the ATA and AACE, I would personally ask for TSH *and* Free T4 testing, since you are so early in the treatment process.

Graves’ is definitely a condition where we need to be our own advocates and make sure that our providers are up to date on the latest treatment recommendations! There is currently a glitch where the ATA/AACE guidelines don’t seem to be available online for free anymore, but if you send an e-mail to info@ngdf.org, the Foundation can get you a PDF copy.

[rushed]

#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.

[miltomal]

#1169566

Wow is right. Looks like you fell off the cliff and are more than ready to start the titration process. You will get through this, but be patient…the process doesn’t happen overnight and it is best to start and move through this slowly. You are on the right track and will get there in time!!!

best of luck!

[rushed]

#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.

[rushed]

#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.

[Kimberly]

#1169569

Thanks for the update! Hang in there, as unfortunately, this is definitely not a "rush" process. Thyroid hormone replacement has a “half-life” of approximately seven days. This means that when you take a dose of meds today, half of that amount will still be in your system in 7 days…one-fourth of the dose will remain in 14 days…then one-eighth will be left in 28 days. So for the first few weeks, the amount of replacement hormone in your system slowly builds up with every dose that you take.

After the first few weeks, you will be ready to test again and see if that dose is right for you, or if further tweaks are needed.

Take care!

[miltomal]

#1169570

Yeah! i am happy to hear that you are hanging in there and doing better with the meds. Be prepared for ups and downs along the way. This does take some time.

I am also happy to hear that your got some meditation Cds from the library, they can also be very helpful when you get stressed or have anxiety during the days!!!

Keep us informed. it is great to hear from folks during this process, so many more of us can hear about it!

all my best to everyone out there going thru GD! Remember, You will get better!!!

[rushed]

#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” />

[Bobbi]

#1169572

It’s good to hear that you are feeling better. It’s also good that you think you have a doctor you can trust to monitor you well. What I have found in the past fifteen years, is that when my levels go wonky temporarily (and they have perhaps two or three times) that the dose change recommendations made by my GP (who runs the bloodwork when I’m at my second home) and the recommendations from my endocrinologist (once the bloodwork is sent to her) are typically exactly the same. It has given me some confidance that the GP could, in a pinch, or over the long run, make the same decisions as my endo concerning dosage issues.

[miltomal]

#1169573

Not sure how to get this out of my mouth this morning, but i believe there is a lag from when your Free T3 and Free T4 settle after adjusting your meds to when your TSH settles, i think it will be around 4-6 weeks difference to be on the safe side. i am a few weeks ahead of you these days and am watching my Frees along with the TSH. And, i am not going to just look at TSH alone to see how if i am on the correct dose until my Frees look good and my TSH looks good as well for at least a couple of months.

My opinion is that posts are never too long because many folks are diagnosed with Graves every day and our experiences help them out. Keep on goin!

Best wishes!

[miltomal]

#1169574

i guess my point after re-reading my last post is that i am not sure if it is such a good idea to just look at the TSH to see if you are on the correct dose of thyroid hormone (yet). I definately am not ready to go that route. Anyone out there have input regarding this?

thanks for the all the help and support here!

[Kimberly]

#1169575

Hello – The latest guidance from the ATA and AACE on post-RAI care notes that [b:2nz1tj74][i:2nz1tj74]"Since TSH levels may remain suppressed for a month or longer after hyperthyroidism resolves, the levels should be interpreted cautiously and only in concert with free T4 and T3 estimates."[/i:2nz1tj74][/b:2nz1tj74]

Once you get to the point where your levels are stabilized — and you are symptom-free — it’s common to just run the TSH test. However, early in the process, TSH alone is not a good benchmark for making treatment decisions.

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