Feeling "crazy" after total thyroidectomy. How long will this last?

Diabetes
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Hello everyone, this is my first time posting so bare with me please.  

I was diagnosed with Graves' disease back in March of 2015, and let me tell you it's been a real treat...*insert mad face here*  I had every symptom you could imagine.  For months my thyroid levels either went down a little or would sky rocket and my goiter would just grow and grow no matter what we did.  Finally my endocrinologist decided to up my dosage to see what that did. Luckily when I went back that next month my levels were good and I was cleared for surgery! That was a happy moment! So on Nov. 3rd I had my surgery, which went fantastic.  It was however 6 hours long, the surgeon said my thyroid was a lot bigger than he expected, 10 cm on each side, and was so tight it was like it was glued to my neck.  I woke up without any pain and have recovered beautifully since.  The only thing is my anxiety, which was originally a lovely side effect of my disease, has been on full blast.  I started a new job last week, but it gave me massive panic attacks so I had to quit.  I don't know if this will eventually calm down the more I take the synthroid or if this is going to be my new norm.  I am currently on anxiety medicine, I have been on it since August and my doctor just uped my dose right after my surgery cause the old dose wasn't working.  I am constantly worrying about stupid stuff, but for the most part I still feel fine.  It just comes and goes.  I've always known I've had some type of anxiety problem, but this is on a whole new level.  I need to be working, but I'm afraid that I won't be able to shake the anxiety and I'm going to have to suffer through it.  Can anyone tell me when this should calm down or if they had a similar story?

By the way when I say that for the most part I feel fine and the anxiety comes and goes I should ellaborate.  I am constantly worrying about something, things that probably won't even happen, but I still feel normal.  It's not crippling or anything.  The only time it got really bad was when I started that new job.  It was a serving job and I wasn't comfortable at all with how they ran things there.  So maybe it was just that situation??? Once I decided to quit and I told my manager I felt like my old self again...just the little worry wart I always was. 

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Hello TK:

My name is Shelly and I am a nurse in the USA.  I have Hashimoto's thyroid disease and a form of Hypothyroidism. However,  I understand the Hyperthyroid problems and Graves Disease.

First of all, glad to hear the surgery went well. The surgery has risks and I am glad you have made it through well.

When you have such an important gland take out, your body sort of has a shock placed on it. It takes the body about 6 to 8 weeks to build a proper level and since you do not have a thyroid anymore the medication has to be absorbed in your liver & intestines and other parts of the body will help.

It is a big deal, as losing the gland makes you go into Hypothyriodism and the body has crazy reactions at times as it adjusts.

If you need to take anti-anxiety medication then do so.  Give yourself a period of time to adjust.  Make sure all your bodies minerals and vitamins are in good shape. Some tests are, potassium, sodium, calcium, magnesium, and ferritin, & iron, also VIt D and B-12.  Always take Your Levo also called (Synthroid) on an empty stomach and wait at least 1 hour before eating.

You have been through a lot and as time goes on it should settle in your hormone levels and the doctor will need to check your blood so they can see how the medictaion does.

Keep us posted on how you feel and how it goes,

Shelly

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Thank you Shelly.  I am making sure I'm taking my levo as directed and I'm also taking my calcium (my calcium was low after surgery, but is now feeling like it's getting back to normal).  I figured it would take a little bit for my body to get back to normal, but I wanted to make sure I wasn't actually going crazy in the mean time smile.  I will try to keep everyone posted on my recovery.  I am very happy with the way everything is healing and my scar looks amazing.  Scar Away strips are the best thing since sliced bread!

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Hello Again TK:

Yes, calcium is made by the parathyroid glands that would be at the corners of your Thyroid gland and now not there.  So it is most important to take replacement calcium. 

I am glad your scar is healing nicely. That is a bonus.  Sounds like you had an awesome surgeon.  So take it easy, and build your hormone level back.  Things will get better.

Shelly

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I know how you feel with the anxiety problem, I had a near total thyroidectomy in Aprl, they are still trying to sort my levothyroxin levels.   Like you my thryoid was huge and they could not get to it all outwithout causing damage, hence a small bit has been left behind, which they think is causing a lot of my problems (too many and too varied to go into).  This morning I was even worrying about a cake I had made in a dream - how mad is that?  Can anyone tell me the name of this drug for anxiety.

Thanks.

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I've been taking Buspar 7.5 mg since August but just had it changed to the 15mg tablet.  It's stricktly for anxiety, since I don't have depression.  So, it doesn't make you drowsy or seem out of it.  I really like it.  Talk to your dr about what anxiety medicine they recommend for you.  

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Hello TK, 

My name is Jess. In August 2012, I discovered I had hypothryoidism and a Goitre, after an MRI scan, they discovered that the goitre was actually so tight it had began to crush my windpipe. On January 21st 2013, I had a total thryoidectomy. Prior to my surgery I was on 50mg of Levothyroxine which has since increased to 125mg (which I am currently disputing due to my huge anxiety increase and other awful symptoms). Shortly after my surgery, they discovered I had hashimoto's disease, which to my understanding is alike Graves disease.

I am in a long standing dispute with my GP, as when I have a blood test on 150mg, they tell me is "too high" however when on 125mg, they say "it's ok". However, on 150 - I feel normal, no anxiety, my heart rate is good, I am able to sleep, my weight stays stable, I have no hot sweats, and I generally feel well. However, the minute I drop to 125mg, the symptoms take a turn for the worse, I feel anxious all of the time, suffer anxiety attacks, rarely sleep, have severe migranes 5 out of 7 days of the week, have disturbing dreams, severe panic attacks and wake up dripping in sweat during the night (when i do manage to sleep). Similarly to you, I have recently quit my job, after being employed with them for 3 years (so prior to my total thyroidectomy). 

I know exactly how you feel post-surgery wise, and I would say stick it out for a little longer for your hormone levels to relax, I know they fluctuate a lot following surgery and this could be why you are feeling so run down. 

However, having been through how you are feeling, I'd say visit your GP, ask to see your consultant and explain how you are feeling. Go for a blood test as regularly as possible and ask them to explore your medication, I know my results say they are "normal" on 125mg, but I know how I feel, and at times I feel like throwing myself under a bus. Noone understands unless they have been through what we have, and the doctors only have 'ranges' to go on. We know how we are feeling and we know our bodies better than normal. 

It sounds to me like you are hypo and perhaps you could do with looking into your levels and seeing if whether you feel better with a slight increase. I am now regularly going back to my GP and they are trying me on a week on week off. It could be nothing, and totally wrong, but you will never know unless you try and to be honest, trying has proven to be so good for me and I am beginning to feel so much better. 

Your still only a month post surgery, so it could be that your body is still learning to regulate. But keep pressuring your doctor as they don't seem to be so concerned regarding thyroid issues as I feel they should be. 

Take care. 

Jess. 

 

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sorry i meant to put week on 125mg and week on 150mg** 

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Hi, I'm reading these comments with tears running down my face.i had a thyroidectomy last month, in desperation as my t3 levels stayed totally crazy and the medicines were making me so Ill . After initially feeling so much better after surgery my life is descending into a nightmare . I had no...I mean no post op care except to treat new problems, my circulation has gone crazy, I've had a blood clot, I have awful spasms in my hands , I can't sleep, I have awful nightmares when I do.im so tired and disappointed . I know it's not a magic recovery but I hoped for better than this.

my endocrinologist has signed me off as fine without even seeing me. My GP googled thyroid problems to treat ,y spasms! I knew more than she did !!  

The hospital told me to stop taking ad cal if I got tingling and pins and needles..I did , badly, so stopped. Bloods show me as on the high end of normal calcium wise. The GP wants me to restart the calcium.

i want to sleep , I'm tired, but my bones ache, my hands tingle almost like I'm getting cerebral palsy...and my elbows burn, my feet have pins and needles all night.

is this anxiety a passing thing? 

Please help me

the surgery itself , and recovery, is excellent, but the lack of post op support is abysmal , I feel so alone, and ill. 

Does this get better? 

Thanks for listening x

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Hi Jan.h (and others),

I am so sorry to read of all your troubles... and I can definitely relate. I had a total thyroidectomy 6 years ago and since then it's been a rollercoaster of on-and-off depression, quitting jobs, anxiety, and major mood swings. I don't want to sound too dismal, as there have been plenty of times when I was happy during the past 6 years, it's just that I know something is off. I also suspect, however, that with one tweak, the right tweak, all can go back to normal. Maybe I just need to believe this, but I believe it all the same.

My thyroid was taken out due to a goiter (growth of the thyroid gland). It was functioning normally (according to western medicine ranges), so nothing was wrong with it other than its size. It was a full thyroidectomy.

I have been on Synthroid (which is synthetic T4, the generic brand is Levothyroxine) ever since the thyroidectomy, and I am just now wanting to go onto desiccated pig thyroid. This is a natural substance (it is the actual thyroid from a pig), and as such contains T3 and T4, as well as trace amounts of T1 and T2. Synthroid/Levothyroxine only contains T4. The body is supposed to convert T4 into T3, but it's possible that some people do not convert as efficiently as they should. In those cases, they might do better ingesting both T4 and T3. One other piece of information is that you can also take synthetic T3 pills to go along with the synthetic T4 pills. After I try the natural pig thyroid, if it does not alleviate my symptoms, I will try synthetic T4 and T3 together. Then I will be out of ideas so I hope one of those works.

I will also say that I would take what western medicine says with 5 grains of salt. It's not that I believe in alternative or eastern medicine (I don't know because I have not gone down those roads yet), but I can say pretty definitively that western medicine does not know much about glands and hormones. They follow the book to the T and do very little thinking on their own. Instead they always quote this or that study, and most of these studies were conducted by the multi-billion dollar pharmaceutical industry. If you were a pharmaceutical company and conducted a test, would you want the results pointing towards or away from the drug you manufactured? I am sorry if you are new to thinking about how insidious it is to have money driving certain industries (healthcare, education, etc), but this is the way it is and we must think for ourselves as a result. For this reason I do not trust their "ranges;" rather, I trust in how I feel. I am also confident that my thyroid did not need to come out, but that instead someone needed to really look into my situation, my personal situation, and not go by averages. Western medicine is all about what is "normal" and does not look at the patient as an individual (in my opinion). 

So after that ramble, I am hoping to hear from anyone who has tried the desiccated pig thyroid (they also have bovine {cow} thyroid if you're averse to ingesting pork) and what they felt as a result. Is there anyone who did not do well on Synthroid/Levothyroxine and does do well on desiccated? Anyone who does poorly on desiccated? Also, any recommendations on brands of desiccated? After some research I was wanting to try "WP Thyroid."

Thanks,

Marc

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Good morning,

I have a full removal of my thyroid Sept 5,2017. They removed one Para thyroid and 12 lymph nodes as well.

I was diagnosed with thyroid cancer early August this year.

I have had several anxiety issues this year and they are seeming to get worse now. I am now on buspirone 10mg three times daily, wellbutrin daily and she just added hydroxyzine 25mg at bedtime to help me sleep.

I feel so out of wack and out of sorts with my body. Can anyone help me understand all of this more.

No one has ever said what to expect after surgery and I feel like I'm crazy.

I have been on LOA from work for 6 weeks now and I don't feel like I can go back yet due to how I feel.

Please help!!

Segan

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Hello Marc:

I am Shelly and I am a nurse (RN) in the USA.  I have Hashimoto's thyroid disease since 1988.  I still have my thyroid and goiter. LOL.

Sometimes they remove the thyroid because the goiter is so big it can cause obstruction of the throat.  I know a lady who had this removed as she could not swallow at all solid foods.  Of course having the thyroid removed, does bring on extra problems.

It can be harder to get the thyroid level correct due to no thyroid.  T4  (Synthroid/Levo) is assuming you have a thyroid to uptake the T4 and convert it to useable T3.

If you have no thyroid you need the liver and other organs & bowel to use this. It does not always work.  I was on NDT (pig's thyroid for years). I am on T3 Liothyronine now only.  My issue is my converter in my thyroid is on the blink...LOL.

NDT is very good and her is why:  You get all 4 hormones T1 to T4 and the PIG is almost the same as a human's gland. So it is better absorbed and works better like our natural one.

Of course you need to find the right dose and build a level. It is done in MG and not mcg.  Weight needs to be considered for a mg/kg ratio.   Dose will be low at first and then changed after blood work in 3 months of time.  They do not want to start you to high. A low dose may be 60mg for an adult.  All thyroid meds must be on an empty stomach food can block the med from working!

In the USA NDT is very available and in the UK not so much. Many in the UK must buy it on their own. Bovine is also good if allergic.

So stick with a Natural and moods will change and life will get back to a normal way.  Eat healthy and avoid Gluten.  Studies show gluten attacks your body and bowels and thyroid  (I know you do not have one).  Several ladies on here have done the Bovine and WP and Nature's thyroid out of Thailand.  Most use Armour brand NDT in the USA.

You will need to have the doctor write a prescription for it, if in the USA and online some sell it without a script.  I loved NDT but I have a T4 issue but I have been on every med and a guinea pig of sorts.  I am 56 years old and I can testify that NDT is a good one!

Let us know how you do. Any questions just ask.

Shelly

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Hi I’m Michele June of 2017 I had a full thyroidectomy due to goiters. I was put on levothyroxine 175 mg. I reached a point I didn’t feel like even feeding my fish-terrible lethargy. Blood work showed my free tsh to be 29.76 extremely high so my dr changed my dose to 125 mg. Three months bloodwork afterward my free tsh barely showed up so now I’m taking 150 mg. It’s been a month- I still feel crappy all the time and the main problem I have is getting angry enough to seriously hurt someone or something and for no reason whatsoever! I can be in a good mood and out of nowhere Satan has taken over. I have been on clonazepam every since surgery because I get so mean n angry feeling. I have to retreat to my room and just cry. If I’m around anyone I will definitely be hateful, say mean things and I cannot take it anymore. This cannot be my life. There was a two week period I guess when levels dropped I felt amazing like a teen again. I had my energy back, happy go lucky life couldn’t have been better. Rn I pray it won’t get worse. I’m wondering what type of specialist I could see because my ENT that did surgery doesn’t take my new insurance. It’s been a year almost and I cannot live like this. I don’t like taking medication as it is and on top of dealing with Dr Jekyll Mr. Hyde personally this has left me with the anxiety meds make me sleepy. 

I don’t like what this has done to me.

Anybody have any ideas?

Thanks in advance 🤗

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Hi Michele,

So sorry you're going through this. I, too, had a full thyroidectomy, although mine was 8 years ago. Since then I've experienced many of the symptoms you've experienced... lethargy, anxiety, crazy irritability, etc, and I've been looking deeply into this for years.

Have you tried desiccated pig thyroid? It is literally the thyroid gland from a pig so it's not cooked up in a lab in any way. I think the synthetic stuff works fine for the majority of people, but I have found that I do much better on the pig. Insurance does not cover it, of course (I think this is because you cannot patent an animal part, by law, and therefore there is much less money to be made), but it's not prohibitively expensive.

Unfortunately (or fortunately in the end) you really need to take control of what's going on with you. In other words, educate yourself as many, many doctors are very unhelpful with these issues. Find a naturopath who thinks outside of the western medicine box (an extremely tight-fitting little enclosure that is kept small by big pharma, the AMA, and the FDA). I'm not going to get onto a soap box here, but they are clearly doing some insidious stuff. Anyway, the fact that western doctors don't learn anything about human diet (seems to be kind of important with regards to health, at least that is what their ultimate mentor Hippocrates said) should be our first clue that they are lacking many answers. They certainly have some of the answers, so they are good to use in conjunction with a naturopath. Listen to both doctors, do your own research, listen to your own body, and then, ultimately, decide for yourself how to care for you.

I am not a doctor, however, I would be careful taking any of the anti-this and anti-that drugs doctors are prescribing these days. These alter our brains in ways I don't think anyone really understands. You're on one until you feel crappy on that one and then they put you on another (or cocktail of others). At best they mask our ailments and at worst who knows what havoc they're causing us down the line?... either way they certainly do not get to any underlying conditions.

Look closely when you feel crappy... is there anything you can do to not be a monster to others? Anything that calms you? Takes your mind off things for a while? See what different foods do to your mood. For instance carbs make me tired, while fats and salts give me energy. This could be totally different for you, but it's good to be able to exploit the effects of food in this way (maybe that's what food was designed for). In the end, maybe we need to go through some of these nasty things in order to heal, and attempting to bypass them is probably akin to the old antibiotic "remedy" of seek-and-destroy. The world is in a lot of pain (and by "the world" I mean humanity)... what makes us think we won't feel that pain individually? 

There is hope, Michele. And there is another side when you're "through" this. Find a good team, learn all you can, and take control. And... be gentle with yourself.

Best,

Marc

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Hi Marc. I totally agree with everything you said. I just had a total thyroidectomy four weeks ago. I had an enlarged thyroid with nodules my whole life. My thyroid function was always normal and I felt fine. Every endocrinologist I went to, wanted me to remove my thyroid, because it could "turn cancerous". I rejected that idea, until out of nowhere, it became hyper...producing four times the normal hormone levels. I felt horrible. There was no other choice but to remove it. After surgery, I was told one of the nodules was "pre-cancerous." Before I had my thyroid removed, I read the book "Stop the Thyroid Madness" by Janie A. Bowthorpe. She recommends the Armour pig thyroid. Right now I am on 100 micrograms of synthroid and I won't even be having my levels checked until the middle of August. I do not have much faith in these doctors (when I asked my surgeon about the Armour before surgery, he told me to get off the internet) and I will definitely be going back to my doctor in Atlanta who practices integrated medicine and does my bio identical hormone replacement, for her opinion. I HIGHLY recommend anyone having these horrible symptoms, to please read this book, as this is exactly the symptoms the book describes! There is also a second book, "Stop the Thyroid Madness 2", that I will be reading next. As far as doctors wanting to prescribe drugs and surgeons wanting to do surgery...I once heard an old saying...a hammer is always looking for a nail.

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Thanks so much Marc66192! I didn’t mention forgetfulness did I? Idk why synthroid hadn’t crossed my mind. I have heard of that. I called a place the other day that specializes in hormone replacement supplements and whatnot and read reviews waiting on a call back. People saying they signed $10,000.00 credit lines for these things and being on disability atm that’s not a possibility. 

Having felt pretty hopeless with options and the quality of live I’m living with (mood swings,irritability being the worst) I have gotten terribly depressed and question this existence. I woke up to an email notification this morning when a lady named Lauren replied to your comment on my post. I’d never known 3 months ago you replied with this information!!😳 

I called insurance they DO cover Synthroid and I think there were 7 dosage levels! Next I called my dr.s office and I have an appointment at 8:15 tomorrow. So kudos to both of you as you’ve given me a HUGE amount of hope. I hope this resolves the problem and I can be the happy energetic loving person I was to some extent if nothing else. 

You two I’m very thankful for your replies. Lifesavers honestly!

Here’s to this chapter.., 😊

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Thank you so much lauren52076! I woke up to a notification that you’d replied and the other reply I didn’t know had been there 3 months! 

I appreciate the both of you so very much. I’ve gotten terribly depressed with the mood swings, depression and thinking I was out of options I was seriously questioning this existence.

My insurance does cover Synthroid and I go see my dr in the morning to discuss changing my medication. You guys rock, you’ve given me hope and something to look forward to. I will check out those books too as I want to learn all I can. 

Oh and Marc if you see this I have been looking into diet. I’ve read different types of diets and one mentioned goes by your blood type as to what foods your body needs and processes well within reason keeping your overall health on track. Changing diet avoiding some medications with the difference diet makes (cholesterol,blood pressure etc) This I want to look into. I want to do what’s best for my body as I’ve never liked medication. People don’t realize the effects medication has on your liver and kidneys and whatnot.

But hey I’m truly thankful you two took the time to reply. 😊

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i still have it my thyroid was taken out in 2016. Ive tried every combo of meds known to man and either had allergic reactions or my body didnt break it down. I still feel horrible but the one that got me closest (still very far away) to normal was NatureThroid. I just keep praying theyll work on thyroid transplants cause this life is no way to live.

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you do not need to take calcium unless they removed your parathyroid - most thyroidectomies leave the parathyroids intact.

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armour is horrible - it made my thyroid grow and then i had an allergic reaction to it. Stay away!