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Avatar universal

3 weeks post TT- feeling TERRIBLE

I had a total thyroidectomy just over 3 weeks ago on December 22. The surgery went smoothly, the (very large) nodules were benign, and I started back at work this past week. My endo started me on 112 synthroid on December 31. I'm also taking 4000 IU of vit D because I was super deficient, and 600mg calcium just as precaution (level never dropped after surgery). The couple of weeks I was recovering were up and down, but I felt myself steadily getting back to normal, if a bit tired.

The thing is, I feel horrible now. I started getting really dizzy a few days ago, and I feel like just functioning normally is a huge task. I've had what feel like "internal tremors" since the surgery and my entire body is achey and sore. I live in New York City and I have to do a lot of walking, the dizziness is not helping with that at all. I can't even think straight.

Is this normal? I mean is this from the Synthroid? Is it because I have no thyroid at all anymore, so maybe I've gone really really hypo? Am I just adjusting (I hope so)? I don't even know what to do with myself, and I'm worried about how this is going to impact my work situation. Help. :(
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Avatar universal
Will, I still get my hormones all over the place especialy being female & our bodies change...

Sometimes I feel like I am literally going crazy mentally, but I have to stop myself & remind myself it is my hormones.

I just changed my dosage again about 4 weeks ago from 150 to 175. They also changed my brand from Levothyroxine to Synthroid.

Maybe the change brand will help me keep my mind on tract...Lucky for me I work for a small company & it is very family oriented as far as them understanding if I can't make it in.

I have not missed a sick day in years, but I am the type that if I am going to be miserable I amy as well go to work & get paid for it. I keep to myself if I can feel myself getting irritable. I just close my office door....

I constantly keep telling myself my coworkers, friends, family are not to blame for my hormones being all over the place so I always make sure I don't take it out on them for my situation..
Helpful - 0
Avatar universal
Me too, I have to go to work because otherwise I'd be out of money and a place to live...but it seems like everyday is more of a challenge to go, because I keep having weird symptoms pop up.

I started the 137 this morning, and I've had a terrible taste in my mouth since about noon. It's almost salty, but not quite, and it's really overpowering. I can't find it as a listed side effect. What the heck is going on here? Am I going crazy?

I wish I'd been warned what a crazy mess this would all be after the surgery. Everyone made it out like it wasn't a big deal. But this really, really is.
Helpful - 0
Avatar universal
For me it was not the being able to go to work, it was more like
financially it was NOT an option.

Heck, even now dealing with the fluctuating levels I drag my achy body out of bed & suck it up...but it is not by choice...

I do not have Short term disability so I have to work to get some kind of pay check.  
Helpful - 0
215461 tn?1331862765
I would have not been able to work for a while, and still do not feel good enough.  I have problems with heart racing a lot since I went hyperthyroid though.  I'm hoping as soon as I am normalized, this will go away. I know others who were back to work and fine after a week though.
Helpful - 0
Avatar universal
I was out for a bit after my TT. I still worked during the dosage adjustment.

The only reason I missed about a month was because of hitting thyroid storms prior & after.

But my co-worker had his removed and he was only out a total of one week.
Helpful - 0
Avatar universal
These comments are making me feel better about this, for sure. The dizziness/lightheadedness is the scariest thing, I think. I can deal with being tired, but it's scary to feel like I could fall over or faint for no reason several times a day. And I've experienced dizziness/vertigo in the past plenty, from chronic sinusitis and anxiety. My endo increased my synthroid to 137 for me to start tomorrow. Here's hoping I start feeling more normal soon.

Another question, for those who are saying it took them a long time to get adjusted. I know this is the norm, but during your adjustment period, did you just feel a bit subpar? Were you able to work and everything, just not at optimum? I have to be honest, the scariest thing for me is not being able to work. I was unemployed for 9 months in 2011 after being laid off, and I finally got a great new job in August. They've been wonderful and understanding through all of this medical stuff, and my output hasn't changed at all, but it's a lot harder for me to perform. I don't feel like I can do much else than go to work and come home and lay down everyday, and even then, going to work in itself (and staying awake/alert all day) is a feat.
Helpful - 0
Avatar universal
It took up to a year to get me on the correct dosage after my TT.

Have patience....it will get better...once you are being properly medicated.
Helpful - 0
215461 tn?1331862765
I had my thyroid removed in August (for hyperthyroid and goiter).  I felt bad for a while after.  I also had the dizziness.  My tsh shot up to 46 so don't be too alarmed.  I actually felt good at that level lol.  I have discovered that even though I am hypo, when I take large doses of the meds all at once I have hyper symptoms.  For me, I started increasing very, very slowly.  This has made the increases more tolerable.  Even with very small increases, I start to have a few days of hyper feelings 4 weeks after the increase.  If I just stick with the meds, they go away and things normalize more.  It's a long process.  I am still not there!  Some people find their normal quicker than others though and I hope you are one of them!  Good Luck,

Danielle
Helpful - 0
Avatar universal
Yeah, just TSH. My endo in FL sent me to the ER because she was concerned about an embolism based on my symptoms. Fortunately, no embolism. But since it was the ER they didn't test any other than my electrolytes and TSH. Called that in to my endo, and waiting to hear back from her.
Helpful - 0
649848 tn?1534633700
COMMUNITY LEADER
Is TSH the only thing tested?  What about FT3 and FT4?
Helpful - 0
Avatar universal
So I had bloodwork today...TSH is 37!!! That seems really outrageous. I guess I should be thankful I can get out of bed at all?
Helpful - 0
Avatar universal
Thanks for your feedback, everyone.

I'm not sure if my GP will agree to order that bloodwork, but if I continue to feel terrible, I'll call her and ask. The endo I'm seeing on 2/2 is not the doctor who started me on the synthroid. I had surgery in Florida (because my mother had a total parathyroidectomy & lobectomy last year, wanted me to go to her surgeon & endo). The endo there was actually great, and I don't think she'd start me on a dose that was too high initially. She seemed to want to get it right so I wouldn't start feeling extremely hypo. I didn't actually know that people were tapered onto synthroid, so I guess it is possible that my body is just having a more difficult time adjusting.

The new endo was highly recommended by my GP, so I'm hoping he'll be flexible and work with me. I can be a demanding patient when I'm informed, and I hope he doesn't just plan on checking TSH and sending me on my way. Obviously, if that happens, I'll just be seeking a new endo. Just frustrating to have to do this while I'm feeling awful and trying to get back to a normal routine!
Helpful - 0
231441 tn?1333892766
I understand that for t/t it is usual to start patients on an estimated full dose (usually somewhere between 100 - 150 mcg depending on weight etc), and then to adjust.

For people who have been hypo for a long time, they would be started on a low dose and slowly built up.

Given how bad you are feeling, it may be an idea to get tested early (this won't be your final levels but after just over 3 weeks it would give an idea if you were overmedicated, or low).

Helpful - 0
649848 tn?1534633700
COMMUNITY LEADER
You may have been started on too high a dosage.  It's best to start at a low dose (often 25 mcg) and let the body adjust to having the hormones, then increase slowly.  Dosage is usually increased in about 25 mcg increments, with retesting at 4-6 week intervals, until FT3/FT4 are adequate to alleviate symptoms.

Helpful - 0
Avatar universal
Many doctors believe that they don't need to test Free T3, that if they know Free T4, then they can estimate the Free T3 level.  This may be okay some of the time, but patients taking good sized doses of T4 frequently find that they are not converting enough of the T4 to T3.  Since Free T3 really does all the work at the tissue level, why not just test and be sure?  

As I repeat so often, a good thyroid doctor treats a hypo patient clinically by testing and adjusting Free T3 and Free T4, as necessary to relieve symptoms, without being constrained by resultant TSH levels.  Symptom relief should be all important, not just test results.  Test results are valuable mainly during diagnosis and then afterward to track Free T3 and Free T4 as meds are revised toward relieving symptoms.

You can get some really good insight, and confirm what I am saying, from this letter written by a good thyroid doctor for patients that he sometimes consults with from a distance.  The letter is sent to the PCP of the patient to help guide treatment.

http://hormonerestoration.com/files/ThyroidPMD.pdf

Take special note of this statement in the letter.  "The diagnosis of
thyroid insufficiency, and the determination of replacement dosing, must be based upon the patient’s symptoms first, and on the free T4 and free T3 levels second."

Helpful - 0
Avatar universal
Just read through those symptom lists, too. Definitely looks like I've gone hypo. I guess I'll wait and see, maybe the Synthroid just hasn't built up enough yet?
Helpful - 0
Avatar universal
I had two large nodules, one was large enough that it was putting pressure on my trachea. I was slightly hypo prior to surgery, and I had fatigue and weight gain, some brain fog, but nothing like this fatigue that I'm experiencing now. The jitteriness and aches I've experienced before, but I assumed it was anxiety (because I hadn't had my thyroid checked for many years until a couple of months ago). I'm seeing an endo on 2/2 for bloodwork to see how the Synthroid is working. They said it wouldn't make sense to have it checked before then, since I only started taking it on 12/31.

Thank you for your advice. Why does it seem like so many endos ignore T3? I mean we're given T4 medication, but they just leave T3 to....fend for itself? It seems weird, especially now that I have NO thyroid.
Helpful - 0
Avatar universal
What was the reason for your TT?  The reason I am asking is to figure out if you were most likely hyperthyroid or hypothyroid before the TT.  The reason that might be important to know is to figure out if the 112 mcg of Synthroid could have caused you to become slight hyper again, or if your symptoms are more indicative of being slightly hypo.  Some symptoms seem to occasionally occur with either.  

If you look at these lists of symptoms, which one seems to fit you better?

http://endocrine-system.emedtv.com/hypothyroidism/hypothyroidism-symptoms-and-signs.html

http://endocrine-system.emedtv.com/hyperthyroidism/hyperthyroidism-symptoms-and-signs.html

In either case it would be best to go and get tested for the biologically active thyroid hormones, Free T3 and Free T4.  Those tests will give you a much clearer picture of what is going on.  Something to keep in mind as you start on the road to getting your thyroid levels properly regulated is that Free T3 is the most important thyroid hormone because it largely regulates metabolism and many other body functions.  Scientific studies have shown that Free T3 correlated best with hypo symptoms, while Free T4 and TSH did not correlate.

If you will get those tests done and post results and reference ranges, members will be glad to help interpret and advise further.  
Helpful - 0
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