Starting thyroid meds after thyroidectomy and RAI ..is it easier to tolerate thyroid meds without a thyroid???

[Itsjakefromstatefarm]

OK y'all ..had a Thyroidectomy..that is over ..Three weeks out now about to do radioactive iodine on tomorrow..then isolation...now here is the part I don't understand again...he will be starting me on armour thyroid by Friday...Here is my question:::: he wants to start me on 240 !!! For 7 days then 120 thereafter!!! 240!??? I thought proper protocol was starting slowly and moving up ? Not blasting you with maximum dosage . I am one of those people that has toleration issues...even with blood pressure medication I had to start off slowly and work my way up...He is doing it backwards... can I break the pills up and start this thing off a little slower . The reactions I got from thyroid hormones in the last was rapid heartbeat and feeling like jumping out of skin...that was before my thyroidectomy...will it be easier to tolerate now that I have no thyroid...in the end before my TT...I was going hyper whoever reads this ...I know this sounds coocoo but any advice will help me ..thank u and God bless and am so grateful for this website

[DanteNXS]

Hey Itsjakefromstatefarm,

I cannot answer your question about the thyroid hormones, but I wanted to ask how you are feeling? I had a lobectomy a few weeks ago and I still don't feel right. I think things are getting better, but I am still experiencing some internal tremors, and lightheadedness, and the occasional heart palpitations. I have not been prescribed any meds yet, hoping I don't need them, as long as everything corrects itself.

Are you symptom free?

Thanks,

DanteNXS

[Itsjakefromstatefarm in reply to DanteNXS]

DanteNXS ok yes there are some times before the TT that I would Google I think I'm going to die...sorry I am just being honest here...after the TT I noticed my heart rate and blood pressure stabilize!!! That was the first good thing I noticed..I didn't have to take so much heart meds...then was the shaking and other really horrible symptoms that makee cry even talking about them. Yes I am better but I dont know if we has the same problems...I had Hashimotos antibodies over 300 and cancer too. But my Hashimotos manifested itself in a hyper state a toxic state...feeling of jumping out of skin..heart palpitations... anxiety...ants crawling on body..pains...pins and needles..I said to hell with a thyroid...why did you keep part of that thyroid?????? I am just asking? I am better but still healing and have another hurdle...

Bruce Lee Rocks

[DanteNXS in reply to Itsjakefromstatefarm]

Your symptoms and journey sound a lot like mine. I actually went to the ER 7 times, due to the hyper issues. I also had bad anxiety, palpitations, internal tremors, high BP, etc.

I had a HOT nodule, so they removed the lobe it was on. I am doing much better now, but still experience some symptoms, I think I just need time to heal and get all my levels back in order.

DanteNXS

[Itsjakefromstatefarm in reply to DanteNXS]

Yes. !! Just hold on you will get better...a hot nodule? Interesting I think I had that but as you know... doctors don't have an understanding of the thyroid a lot of it they are guessing. .they told me I had hashitoxicosis or something like that..I had 5 nodules I wonder if I really had just a hot one or two. Who knows...if you don't have graves and you don't have hashi then you should be rockin your old self in no time!! You didn't have graves???

[DanteNXS in reply to Itsjakefromstatefarm]

No Graves, but like you I was told that I had a bunch of different things, before they actually did the scans and saw the nodule. This site has been very helpful to me and Clutter, Grey goose, radd, and multiple others have helped me tremendously.

I just want to be normal again and this ringing in my ears has to stop soon too.

DanteNXS

[Itsjakefromstatefarm in reply to DanteNXS]

I see . .you have tinnitus too...I had a few other health issues before the thyroid journey...I believe you will be fine. Now if not ...you will continue to fight! I have become quite the warrior. .I pray for others it brings me peace. Yes this site has brought me so much solace...god bless everyone

[Kalicocat in reply to DanteNXS]

OMG, I have horrible ringing in my ears, got really bad about a year ago around the same time my antibodies shot up. Having a terrible time at night trying to sleep and honestly feel that the ringing has affected my hearing.

[DanteNXS in reply to Kalicocat]

There are times when the ringing is so bad I get dizzy and nauseous. It is not something I'd wish on anyone.

[Kalicocat in reply to DanteNXS]

No, it's not fun at all, I was really hoping it would go away with medication, but I may still need more of that, getting tested again tomorrow. Here's hoping it goes away for both of us.

[greygoose]

Jake, I've never had a thyroidectomy, so I cannot speak from experience. But, as I understand it, you were never hypo, where you? So, what he is doing is putting you on the same dose that you had naturally right up to your thyroidectomy.

It's people that have been hypo for a long time that have to start low and increase slowly, because their bodies have to get used to having hormone again. Someone else with experience might come along with a better explanation, but that's the way I see it. I just don't want you to spend the night worrying about it.

And, you really cannot compare NDT to blood pressure medication. There's no similarity at all. NDT is not a drug.

[Itsjakefromstatefarm in reply to greygoose]

@greygoose i had a TT...for hashi..but also cancer...I have no thyroid hormone in me right now at all...my level is zero..I am completely hypo....this is what they do to you in preparation for the RAI... now yes blood pressure medication is medication...but so is thyroid hormones if you have ever been hyper you know this...I had hash but had hyper type symptoms..rapid heart rate...shaking etc...years ago way back before Hashimoto swings and thyroid cancer ...I got up one morning to take my small dose of 30mcgs of nature thyroid and my heart starting going fast and feeling jumpy like a cat on a hot tin roof...what happened was my thyroid swung over to hyper...so I am a little scared ..but I have to get over my fear of thyroid meds..I will also be facing RAI tomorrow.. I was wanting to start on a low dose and go up of thyroid hormone but he is doing the opposite.. sorry been through hell lately...ready to relax

[greygoose in reply to Itsjakefromstatefarm]

Ok. I have been hyper. I have Hashis, too. I just thought you had a TT for cancer. It's not usual to do that for Hashis. And l just thought you haven't been hypo for years and years. You are low in hormone now - l don't think you'd stll be alive if you had none at all - but you are used to taking thyroid hormone. It's not totally alien to you. And l imagine they have their reasons for doing it that way.

[Itsjakefromstatefarm in reply to greygoose]

I thought the same thing that you don't live with zero hormone but you do..you just dont live well..and you can't stay on that state of no thyroid hormone forever...6 weeks is about the tops. I get my RAI tomorrow..when they told me I would have no hormones until "I was drained dry" I cried. No I had a TT strictly for hashimotos ..I had 5 nodules. My hashimotos was hypo for only the first year then I swung high . They couldn't control it..they called it hashitoxicosis excuse my bad spelling...after becoming very ill with Hashim...and having been told I Did Not Have Cancer with two biopsies and one uptake scan. I was told my thyroid being removed would give me the much needed relief... honestly I was ready. It was after they took it out that they found cancer in it...both lobes. Thank you so much for talking to me...the caring people on this site is amazing...I have learned that we have to become our own advocates and we need each other to learn from...I was only on a small dose of thyroid hormone when I was hypo for about a year.. then I was hyper or borderline hyper but had hashimotos .. I don't understand all of this. ..I am trying to stay positive...and just keep going...and learning ...thanks again

[greygoose in reply to Itsjakefromstatefarm]

You're welcome. I hope it all goes well.

[Jan_one]

Hi, I had my op over thirty years ago and started my thyroid replacement meds at 200 and stayed on that dose until last year. I'm now on 150 and feel terrible.

[Itsjakefromstatefarm in reply to Jan_one]

Jan_one why can't you go back up on your dose then????

[Jan_one in reply to Itsjakefromstatefarm]

Itsjakefromstatefarm

Hi jake, I went along for my normal annual test feeling OK. When my results came back I was told they need to lower the dose. I thought it was odd because I felt the same as always. Not that I think I have ever felt completely well, I had my op in 1981 while being six months pregnant. I had been on the same dose until about 15 month ago, the doctor explained that as you get older not as much is needed. After taking the new dose for around a year and feeling absolute pants, I had my routine test. The doc phoned me to say my body was working too hard to keep every thing going and asked how I felt. That doc put my dose back up, three month later a new test said I'm borderline and need to speak to a doctor. This doctor said levels are too high and lowered it again. I said I didn't understand how after all this time my results are unstable now. I'm having another test on the 19 September. I feel rubbish, I don't have to tell a fellow suffer how it can be. I wish you luck with your treatment and hope you have a good doctor.

[Itsjakefromstatefarm in reply to Jan_one]

Thank u...I hope you get to feeling better as well. This site and the people here caring for each other has been so wonderful..feel rubbish means you feel real bad...I am learning all of this UK slang...yes...I will pray for you...prayer works...!!!! I am sorry I shouldn't presume you are spiritual...if I didn't believe in God I woulda gone coocoo along time ago...but I have had some spiritual happenings in my life that have given me hope.. I don't know what you have cuz you didn't state just hypothyroidism...is it hashi...? If we need less hormone as we age that is good news...I am 45 now...again praying for you

[SilverAvocado]

I think if you've had a TT it's a little different than if you've naturally developed being hypo. Theoretically you walk into the operation with a full dose of thyroid hormone (made by your own thyroid), and so they set you up straight away with a very similar dose. You're like a person changing over from Levothyroxine to NDT - exchanging one full dose for another at a similar level.

Starting on a double dose seems very strange. My guess is that they want to fill up your stores after leaving you hypo for so long. But I've never heard of anyone doing it that way before. Your Endo sounds like they treat people's bodies very roughly!

[llynnchurch]

Hi jakefromstatefarm,

I have been told I have hashitoxicosis too. And have not tolerated any thyroid meds in the past either they are wanting to do radioactive I-131, just wondering how you did with medications afterward? What you took ? And how you're feeling now ?