# Thyroid hormone replacement - options



## I DClaire (Jul 31, 2011)

I've had this thread on my mind all day. http://www.thyroidboards.com/showthread.php?t=4571 Do people whose thyroids either don't work at all OR have been removed or destroyed ever feel "normal"? I had my thyroid surgically removed on 9/23/11 and I've been on 125 mcg Synthroid ever since - 7 1/2 weeks.

I am 5' 7" tall and weigh 170 lbs.

I felt wonderful the first 3 weeks after surgery - since then I feel like I am not only losing ground BUT I'm getting worried something is not right besides possibly the amount of Synthroid I've been taking. Are there some people who cannot tolerate Synthroid? What other options are there? Are there people who never find a thyroid hormone replacement that works for them?

I feel SO bad now that I can barely function normally. If Synthroid is supposed to restore energy, vitality and stamina then I am woefully lacking...even though I can't help thinking 125 mcg is not a terribly bad dose for me, one way or the other. Whether it's too little or too much, it can't be too extreme either way, _can it?_

Frustration and disappointment are doing a number on me. I'm going to see my endocrinologist for the first time since surgery day after tomorrow. I look like a total wreck and I feel worse than I look! My feelings run the gamut of everything from jittery nervous and shaking, sweating and feeling panicky to hopeless depression, lethargic but can't rest, irritable, can't concentrate one iota.

If my test results on Thursday indicate I need more Synthroid, I feel like I'll become even more jittery and nervous. If the tests indicate I need less, I'm afraid I won't be able to get out of bed. I just simply don't feel like Synthroid is giving me any degree of stability when it comes to energy and something about all this is making me crazy. *What if the test results are perfect and this is as good as it's going to get?*

Someone, I believe it was Andros, commented in the other discussion that it might take 12-18 months (?) for all this to level out. I don't think I can survive 3 months the way I am now. I feel like at the least I should be sensing some level of improvement but nothing could be further from that. I feel like some half-crazed nutcase with an ever growing appetite!!

Are there other thyroid hormone replacement options IF it turns out I cannot tolerate Synthroid? Several members here had thyroid surgery around the same time I did - does anyone really feel like they're regaining their energy?


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## Octavia (Aug 1, 2011)

IDC, I don't have any "science" to share related to your question, but from a patient perspective, I would say that you just have to keep working with the docs/labs/drugs until you find what works for you. There are options. We are not all the same, and we react differently to drugs and levels...there has to be something that will make you feel human again.

I know dosage is not purely weight-related, but I weigh 125ish pounds, and I take 150 mcg of Levo. Just some perspective.

My surgeries were February and March. My energy levels go up and down. Today was a very good day. Yesterday, I went into a coma for two hours in the afternoon, when I only intended to take a 30-minute nap. (I'm exaggerating about the coma, but it sure felt like it.) I would say I feel "normal" about 75% of the time...the remaining 25%, I feel very tired and/or my voice/neck hurts a lot, to the point that I simply cannot hold a conversation because it hurts too much. I spoke with the ENT about this yesterday, and we're exploring what it could be, but he does not feel that it's a return of cancer, so that's good.

If I remember correctly, you take some other meds. It might be worth exploring the possibility that one or more of your meds don't "mix" well with Synthroid. Just a thought...

Hang in there, advocate for yourself, and keep trying different things with your doc. Also, you may benefit from keeing a diary, where you record things like food, exercise, how you're feeling each day, stressors (I know you have several), and other relevant pieces of information. Maybe you'll start seeing a pattern somewhere in there...I don't know.


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## webster2 (May 19, 2011)

IDC, I completely understand. For a few weeks after surgery, I felt pretty good. Lately, it is more sluggish days than not. I had two great days in a row recently, and the body & mind paid the price the following days. I have still not made it an entire day at work, and most likely will lose my job if that doesn't change very soon.

I am supposed to see then endo on Thursday too. It will be the first time since Graves dx and surgery. I go back and forth about wanting to keep the appointment. I have found a naturopath that seems a whole lot more promising than this route. All of these specialists seem to only look at one part of the body and seem to not care that they are connected to a whole and there's a person in there too.

After looking at the most recent labs that have come back, my T3 is decreasing, and the free is low. And, the GP does not run the same tests each time. I think I would really like to try the Armour. I think there is more to life than being sedentary and blah feeling.

I have isolated myself from my closest friends because it seems like too much of a challenge to keep up with them. I miss being active. I just don't have the umph to do the things that I normally do. It takes me forever to do my housework. That, and walking the doggie girl are about it for me. My husband seems to get that I am not myself except when I tell him I am cold, really cold most of the time. He thinks I am not dressing for the weather...and it is no where near cold yet.

On Monday, several of my library patrons told me I didn't look well at all, very pale etc. It was a not a good feeling day for me at all. Plus, I had a trustee meeting that night, and I was heavy into brain fog. Not good at all for my case to keep my job. I don't want to dwell on not feeling fabulous and sure don't want to talk about it. I do not want it to be the focus of my day, or life. I ran a stop sign on Sunday. I didn't see it nor remember that area of the road. It was scary to me, most likely terrifying for my husband who quickly took over driving.

I don't regret having the surgery, I just wish I had learned a little more about this after life or limbo than I did. Eighteen months was mentioned often, but I never really digested what the eighteen months would be like.


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## I DClaire (Jul 31, 2011)

webster2 said:


> I am supposed to see then endo on Thursday too. It will be the first time since Graves dx and surgery. I go back and forth about wanting to keep the appointment. I have found a naturopath that seems a whole lot more promising than this route. All of these specialists seem to only look at one part of the body and seem to not care that they are connected to a whole and there's a person in there too.
> 
> After looking at the most recent labs that have come back, my T3 is decreasing, and the free is low. And, the GP does not run the same tests each time. I think I would really like to try the Armour. I think there is more to life than being sedentary and blah feeling.
> 
> ...


I don't regret having surgery but I kinda' wish I'd been advised to have it 2 years ago before it completely wore me down. I know my endocrinologist well enough to know she is all about numbers. Period. If I were to ask for a specific drug, she might prescribe it but I get the impression she absolutely goes by a textbook. I wish I could find an endocrinologist who had thyroid problems!

You and I are on the same plane, Webster2. I see my doctor Thursday. I've all but given up housekeeping. I make an excuse everytime I'm invited to do something with someone. By the time I get a shower and get dressed I'm exhausted and shaky. I'm the most hot-natured person on earth and I'm sleeping with my socks on when it's 75 degrees outside. Left to my own devices I'd stay in a recliner all day covered with a small blanket.

Everybody I know tells me I look terrible and my mood is horrible. I am not myself! I don't even have the stamina to try to pretend I feel O.K. I embarrass myself yawning all the time.

You ran a stop sign - I ran over 2 parking signs at a plant nursery. I never saw them! Two signs on white pipes anchored in heavy pots of cement - and I never saw them. A nursery worker had to get down on his hands and knees and pull the broken signs out from under my SUV. I'm ashamed to ever go back there. I know he thought I was drunk.

The #1 *HUGE* thing I can't accept or deal with is I simply do not feel like myself. I don't honestly feel like anything - I feel distracted or disconnected and I cannot imagine how the holidays are going to play out. I don't understand being hyper-jittery at the same time I'm lethargic and "twired".

I know everyone is sick of hearing how weird I feel but I'm honestly afraid. I never dreamed I'd feel this disappointed after surgery.


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## I DClaire (Jul 31, 2011)

Octavia said:


> I feel very tired and/or my voice/neck hurts a lot, to the point that I simply cannot hold a conversation because it hurts too much. I spoke with the ENT about this yesterday, and we're exploring what it could be, but he does not feel that it's a return of cancer, so that's good.
> 
> If I remember correctly, you take some other meds. It might be worth exploring the possibility that one or more of your meds don't "mix" well with Synthroid. Just a thought...


I sometimes, for no reason on earth, become too hoarse to carry on a conversation, particularly on a phone. My mouth becomes dry to the point that even drinking something won't make any difference. Once in a great while I'll have pain in a specific place but I kinda' have associated it with trying to swallow large vitamins...so I stopped the vitamins for the time being.

All I'm currently taking is my Synthroid, my blood pressure drug (Toprol XL), Viactive Calcium and Vitamin D. I stopped everything else - even the probiotic capsule, though I'm still eating the Greek yogurt.


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## Octavia (Aug 1, 2011)

I DClaire said:


> I know everyone is sick of hearing how weird I feel but I'm honestly afraid. I never dreamed I'd feel this disappointed after surgery.


Not sick of it at all. I sincerely wish there was something I could do or advise that would help. That's the bad part for the rest of us...just that complete inability to offer anything other than sympathy. 

I just can't help but think we're missing something. NOBODY should feel this bad. There has to be something that can be done...


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## joplin1975 (Jul 21, 2011)

Just listening, wishing I could say something helpful...:-(


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## Andros (Aug 26, 2009)

I DClaire said:


> I don't regret having surgery but I kinda' wish I'd been advised to have it 2 years ago before it completely wore me down. I know my endocrinologist well enough to know she is all about numbers. Period. If I were to ask for a specific drug, she might prescribe it but I get the impression she absolutely goes by a textbook. I wish I could find an endocrinologist who had thyroid problems!
> 
> You and I are on the same plane, Webster2. I see my doctor Thursday. I've all but given up housekeeping. I make an excuse everytime I'm invited to do something with someone. By the time I get a shower and get dressed I'm exhausted and shaky. I'm the most hot-natured person on earth and I'm sleeping with my socks on when it's 75 degrees outside. Left to my own devices I'd stay in a recliner all day covered with a small blanket.
> 
> ...


We are not sick of our friend I Dclair who is always there for us when we need her.

Get your labs. TSH, FREE T3 and FREE T4. Let's see if you might be a candidate for Armour. Or the addition of Cytomel to your Synthroid.

Huggles,


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## I DClaire (Jul 31, 2011)

Thanks guys. Great, Andros - now I've got puppy fever on top of everything else! :winking0001: In all seriousness, is there anything cuter than a pug puppy?

Today has been the worst yet. I've been in bed since noon - I just do not have *any* energy. The stress of knowing how much I need to be doing and don't feel like doing is making me feel SO bad. We're expecting visitors in an hour and I don't even feel like getting dressed. I was using a hair conditioner in the shower this morning when I felt kinda' faint so I gave it a quick rinse and got out and _you should just see my hair._ :ashamed0003:

Maybe I'll find out something tomorrow when I see the endocrinologist and get my latest lab report. I can just see her saying (like with the last lab report before I scheduled surgery) that everything looks great! If so, I may just jump off a bridge on my way home!!

I wish I could get interested in SOMETHING!!! I feel like I'm totally disconnected from my so-called life.


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## webster2 (May 19, 2011)

I DClaire said:


> I feel like I'm totally disconnected from my so-called life.


That's pretty much how I feel, plus I am now fat. I have left chunky and moved right on to fat.

I got a puppy right before I really got sick. She has been right by me the whole time. I had doubts about my ability to care for her when I was a total wreck, as compared to a partial wreck now, but she is certainly a big bright spot in my day.

Today a library patron told me she had heard I'd been ill. She asked me what was going on. I told her and she said, "oh, I have Graves too. I don't really know it is." I felt like a huge wimp because before surgery it was ruining my life. And, this woman didn't even know what it was, so maybe it didn't manifest like it did for me. I am not sure what's going on now...

I am very grateful to have all of you to vent to. Thank you for listening, commiserating, and being supportive. I sure would be at the funny farm without you.


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