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1139187 tn?1355710247
IS THIS HOW YOU FEEL WITH HYPOTHYROIDISM?
Hey guys,  lets compare notes.

I was diagnosed with hashimotos a year ago.  I was on a small dose of levo, which was increased 9 days ago to .050.  The Dr. told me that once my tsh gets to 2.0 i will feel normal. my Tsh last checked 9 days ago was 7.93.  T3 was low too.

So I go to bed about 10 pm after I drink about 2 small beers.  I wake up about 9 am and My ears are ringing off the hook.  I feel horrible. I do not want to get out of bed.  I am still exhausted. I take my LEVO and I lay there for about 30 minutes.

9:30 I roll out of bed.  I am EXHAUSTED.   Im foggy, im shakey.  My wife asks me if I want anything to eat, I decline.  I grab a water bottle and I drive to the gym.  At the gym I feel HORRID.  I dont have any energy.  I sometimes will stand there and look at a machine and think "next time".

So I get my half hour at the gym, i head home. I go home and eat something small and I lay on the floor for the next two hours and think to myself "I wonder if the 900 doctors I saw missed something".

2:00 PM -  I start to feel better, I know have a little energy, I play with my kids as much as i can because I know any minute im going to feel crappy again.

8:00 PM -  Ears are now ringing again, im foggy again, im shakey, and I just want to lay down on the floor and I have to tell my wife I dont feel good.

10:00  I finished a glass of beer and im heading to bed.   It was a very joyful day, I felt acceptable (not good) for 8 hours.

Am I fooling myself thinking this is one day going to get better?  Why Do I feel so crappy in the morning?  Should I take my medicine earlier?  Am I not taking enough? Is it something else?

BRuce




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1139187 tn?1355710247
Actually I tell the dr.not to waste my time leaving the room for me to slip into the robe,,,lol

Has anyone tried those over the counter thyroid meds?   A couple of ladies on the other board swear by them.

I'm having a spinal tap Friday or Monday.   It's the only test I haven't had,  this will complete my medical scavenger hunt.
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Urgh. Your list of complaints mimics mine (substitute menstrual issues and hot flashes for the lack of night stiffies). -I've just found out I have Hashi's...Lovely. Something to look forward to...:P ~MM
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393685 tn?1425816122
You'll be fine MM... I got your back.
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1139187 tn?1355710247
I think I have a better word for brain fog.....  Dementia
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1139187 tn?1355710247
interestingly enough,  i had a lumbar puncture 3 days ago and the symptoms im experiencing from the lumbar puncture are the same i have experienced from whatever the hell is wrong with me.
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649848 tn?1484935765
Are you sure the symptoms are from the lumbar puncture or could they just be from what's wrong with you?  
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1535467 tn?1342235270
Basically Hashimoto's feels like your dying.. very slowly.

Yes the morning fatigue is TERRIBLE, but trust me over time (could be months, could be a year) it WILL improve :)
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1139187 tn?1355710247
Barb I had horrible things happen to me after my lumbar puncture.  They were exactly like the symptoms ive had but worse.  Ear ringing, headache, neck tension pain.   So today I had a blood patch.  The blood patch was the most painful thing I've ever had.  Ever..

All my symptoms left right after except the ear ringing...  False hopes.

Dream naut,  I'm not on any thyroid.  I can't tolerate it.  It makes my ear ringing worse.  Sux
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219241 tn?1413541365
What's a blood patch, Bruce?
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649848 tn?1484935765
Here's the definition of blood patch:

"An epidural blood patch is a procedure by which your own approximately 15-20 mls of blood is taken and injected into the epidural space in the spine at the site of the spinal fluid leak.

The blood clots and seals the hole in the dura which stops fluid from leaking out.  The procedure is used to relieve severe headaches caused when an epidural, spinal needle, or diagnostic lumbar puncture punctures a hole in the dura."  

My daughter recently had to have one following an epidural for child birth.

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Another Hashimotos guy here....agreeing with everything you and the others have said.  I am 42. In the mornings I sometimes feel like I am a sticker on my mattress and need to be peeled off! I am three years into Hashis and proof that it does get better...BUT...it can hit you again at any time.  I started taking vitamin D and that seemed to make a difference for me.  Until recently I took a passive approach with my Dr and accepted everthing he said as gospel.  I have been tracking my bloodwork and questioning all fluctuations, changes and trends.  The downside to that is that he has become more passive....in fact I had to point out to him that one of the nodules on the remaining half of my thyroid is visible....I have an ultrasound appt today.
I forced myself to go to the gym....nearly killed me but after a good workout I feel much better.
I hope things are getting better for you...its a tough haul!
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1522652 tn?1291241954
Hi Bruce,

I  was just reading your list of symptoms above and I have most all of the same, with a few extra.  I was reading an older post with the ringing in ears, I currently don't have that, but I can hear my pounding heart in my ears, and if it's hard enough, I feel a tremor in my eyes and it causes things to appear as if they're shifting, kind of like my eyes are dancing to the beat.   I've not been diagnosed with thyroid disease, though I feel this is my problem.
My question to you is, did you have ringing in ears prior to your diagnosis?  If so, was it followed by "Bell's Palsy", paralisis in certain areas of the face.

I have had that annoying condition 4 or 5 times, but each time the ringing came first, lasted a few days and was then followed by my eye twitching and "drawing", usually my left eye would feel like it would be drawn wider than the right, and i could feel the nerves contracting from my scalp.  Crazy feeling and hard to describe.  Each time I've had this it's always affected my mouth, one side would droop slightly and not move when I would purse my lips to spit... Does this sound familiar to you?      Sorry for the long summary here, but it's frustrating and I so badly need a diagnosis, before I really do lose my mind.  

thanks and Happy Holidays
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1139187 tn?1355710247
Redhead,

It was weird.  They did a spinal tap on me to positively rule out cancer, ms etc.  They puncture your spine to get the fluid out.  As a side effect, my ringing got worse, I had this horrible headache.  They made me go back to the hospital to get the blood patch to seal the hole and help it clot.  The headache went away after about 20 minutes, however it was the most painful thing ive ever done.  Even more painful than gallbladder surgery.  It was scary too because they had this huge needle in my back and the idea was to take blood from the arm and put it in the back to patch the hole except they could not get any blood from my arm.  So I'm sitting there with this huge needle in my back waiting for them to draw the blood.  It was horrible.
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1139187 tn?1355710247
sick of being sick...  i got that when i was ON thyroid...  now that im off, its a whole new ball game :(
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1139187 tn?1355710247
Im not sure if this even matters, but ive been reflecting on my life and i think ive been hypothyroid my whole life.  ALways the sluggish kid, always falling asleep when studying, always tired in the morning.  Heavy for no reason, track team in school yet could not run over 2 miles without feeling like i was going to die.  

I dont know why a year ago something suddenly snapped on me and all these crazy symptoms started but I think it has been manifesting my whole life.  I also think my dad was probably hypo as well.  he passed away at 42, obese, diabetic, hands shakey.  

bruce
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1550026 tn?1299339682
I was diagnosed at the end of September 2010 after having 1/4 of my thyroid removed due to a nodule. The surgeon told me I have Hashimoto's disease. I had already been on thyroid meds for over a year, increased from 25-and up...now I was just put on 125.
Thanks fo posting. the last comment made me realize too that I suspect I always had this...I am glad that at 57 i know I do because all my life i just thought i was weird...now i know i have a disease.
I got up because I awoke with the ringing in the ears and a panicky feeling. i am actually sipping on Chamomile tea.
I don't do gluten, soy, eggs, sugar, alcohol, caffeine and try NOT to do dairy...These are choices i made before being diagnosed and from all my reading these are substances to avoid with Hashi. oh yeah...tea is a no no. naturally occurring fluoride interferes with thyroid.
So i drink decaf coffee with almond milk.
I am glad I know because quite frankly my quality of life is better than it was for most of the rest of my life...but is it perfect...hell no...i am coping.
boy, it is wonderful to find this place where we can vent, share, help each other and just feel less alone.
HUGS
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1139187 tn?1355710247
I always feel acceptable until about 230 every single day.  And then something changes in my metabolism and i start to get dizzy, ears ring etc.   i dont understand it...
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I get tired every single day at 3 pm, it is so bad sometimes I have to have a nap (i'm 28!).  I was diagnosed in March 2010.
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535882 tn?1396580285
could be your body reaching out for the thyroid hormone that you don't have in your system then it's shocking  the system searching for these hormones  get it balanced in your system it won't be doing that anymore.  start adrenal support , then 2 weeks later start a small dose of thyroid hormone and increase every 3 weeks till symptoms disappear. start today! get off the train your on and onto the train back to health. !!!!  Kevin
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1139187 tn?1355710247
Kev,  you should be a personal trainer...

Honestly i cant tolerate it.  I tried taking testosterone the other day and it did the same thing....   One day... One day..
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393685 tn?1425816122
Who suggested taking the testosterone?
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1139187 tn?1355710247
The endocrinilogist.  I was actually on the testosterone about 4 months ago when i was taking thyroid but it made everything much worse.  i didnt realize it at the time that this is what was causing a lot of my symptoms.  Think inability to take thyroid x 2  because I was getting a lot of the symptoms from taking the testosterone as i was the thyroid.  So I thought i would try once again (with my doctors approval) to take the testosterone but this time WITHOUT thyroid, but it did the same thing to me as it did before.  Just in one day I had all the symptoms back.  
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If you do not give your body time to adjust to the thyroid medicine, which means you need to take it for more than a couple of days, then you will never feel or get better. It can be as simple as you need to take the medication or feel horrible. If you give your body time to adjust to the medication then you may be surprised that one day you do feel better.  Also, you need to stop self treating by starting and stopping medications as you deem necessary. All that does is cause additional problems. Anyone reading your posts can see that is what you are doing. Others have on here have told you the same things though.

Maybe you need to see someone for depression as well (and that is not meant to be mean or sound mean).



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1139187 tn?1355710247
I took levo for 6 weeks.  Actually felt worse, hardly able to function.  Horrible times.
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Whenever I have a change in my thyroid medication, which I have been taking for almost 20 years now, I need to wait a couple months before I really notice a difference. It is not something that happens overnight, or maybe not in a week or even two weeks.

Relax a little...maybe that will help to not be so stressed out about it. I know, easier said than done! Since you say a lot of the symptoms happen at the same time of day everyday it may be stress related because you are expecting those symptoms to happen. You have "programmed" yourself to expect those things at the same time everyday. Maybe that is when you should take the long walks in the park as mentioned by someone else!!
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186166 tn?1385262982
excellent observation abby51.
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798555 tn?1292791151
Bruce, just last week I read in one of your zillion posts that you still get your eposodes even though your not taking any thyroid med at the moment. So you said, after all it was not the med doing it to you.

Bruce, it is possible for the body to get 'programmed' to feel or have symptoms of something like abby said. That is how nightime reflux works. Yep. Happened to me in the past. Once the cycle starts, its on time every night like a train!! Once the routine is broken it gets better much faster. The brain is the subconcious controller of the whole body weather we like it or not, even if illness started the cycle, the brain can continue it for no reason.

Another thing : When I was very deep into 'hypo land' last spring / early summer, I felt terrible even 30 min after taking Erfa. I dont know if when your very hypo the body just reacts very odd to the thyroid it needs or what, but I would feel hot, sweaty , shakey hands, hot face and feet. I just told myself its what my body needed and I will get better. I did feel better very slowly - months of feeling crappy after med..

You have to endure it and be positive. Walks in the park are a positive thing to do. Re posting the same  post every day sitting infront of the computer is not doing you any good. That might be the answer. Take your med and tell yourself you will get better. But you have to believe it yourself and turn your thinking around. If your still reading this - good.  At this point you have nothing to lose. Try it. No. I'm not joking.

: )
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798555 tn?1292791151
But you said last week that you still get the episodes even with out thyroid med for the last month. Than its not from the thyroid med , is it?

No need to be sorry. try what I mentioned, it might just work. And needing work while sick is stressful - fuel for the adrenals.

Break the day into small parts of things to do. Including some sort of stress relief, outdoors, water, music whatever your gig is. Time out to turn  your brain off. Easier said than done I know.

With the right approach, I bet you can tolerate thyroid medication. Right now just the thought of it seems to freak you out, seriously this might be part of the challenge.

A question for yourself- Has taking other non thyroid meds ever caused 'med anxiety' in your past ?(there is a certain name for a condition like this, they name everything now of course).
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186166 tn?1385262982
what i see is a VICIOUS cycle...

thyroid issues = poor health = depression and anxiety = self medicating = thyroid issues = poor health = depression and anxiety = self medicating....................

my daughter in law suffers from depression and is bi-polar.  she would go to the dr...get put on a med...and if it didnt work in 3-4 days, she would come off of it, swearing it "didnt work".  on to another dr. because the first one didnt know what he was doing.   he would change her med because she told him that xxx didnt work on her...of course, NEVER telling him that she only took it for 3-4 days.  the new meds would be short lived too because they "didnt work" in 3-4 days and the new dr didnt know what he was doing either.   this cycle went on for YEARS due to her self medicating and not working with her dr.  

all of this cycling was causing a large amount of anxiety in her life.  it wasnt until she met me that things began to get better for her.  what i was able to finally make her understand is that it takes TIME for these drugs to work...they are not like a tylenol that would give her pain relief in 20 minutes.

her depression and anxiety had gotten out of control and she was no longer able to leave the house...her migraines were debilitating...her blood pressure was very high...and she was dizzy all the time  all this was a result of HER refusing to "work with" her dr.

my daughter in law is now very healthy...both mentally and physically.  she no longer takes migraine meds, blood pressure meds, or klonopin for her anxiety.  WHY?  she finally WORKED WITH her dr and not against him.  

i have read most of your posts since joining this forum and what i saw FROM THE GET GO was depression and anxiety.  what i saw at the forefront though, was your inability to WORK WITH a dr. and a HELLUVA lot of self diagnosing and self medicating.  what i want you to try and understand is that anxiety can AND does cause very real physical symptoms.  "i" understand where your anxiety and depression are coming from...you want to feel better...but at the same time your feeling bad is causing your anxiety and depression to worsen.  can you see the cycle???????

i just had a TT a few weeks ago because of cancer.  i dont feel good AT ALL...and even though i dont...i continue to take my prescribed med KNOWING that in time...and maybe having to WORK WITH my doctor, my dosage and/or meds...that i will eventually pull through this rough time.  

you CAN feel better bruce.   please stop this cycle...get on the band wagon of good health...and find a dr who YOU will work with and will work with you.  give him a chance and dont bail out because you dont find instant relief.   going to repeat that...GIVE HIM A CHANCE AND DONT BAIL OUT BECAUSE YOU DONT FIND INSTANT RELIEF ! !

ROME WASNT BUILT IN A DAY...

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I agree with everything Lizzie Lou stated above. You have self-prescribed yourself by going against what the doctors are saying making the problems even worse. That is why I mentioned earlier you should seek help for depression. Until you decide to find a doctor, stay with the treatment plan the doctor sets to give it a chance to work, and get any other underlying issues (such as possible depression) dealth with, you will not feel better.

You mentioned that you took thyroid medication for 6 weeks. Does that mean you took the same brand for 6 weeks or you jumped between, for example, Armour and Synthroid?

I was in high school the first time I heard cancer mentioned as a possibility, meaning thyroid cancer. I had a TT and I still to this day deal with issues relating to the hypo caused by the TT, however, I know that the problems are not permanent...it gets better by follwoing what my dr. recommends. I went through a period of depression/grief not very long ago due to the death of my mom...during that time my thyroid levels were out of control...I was too hyper or too hypo. Now, whether that is from not properly taking the medication for a brief time or if it was because the stress had such an impact, I do not know.

My point is, once I made the conscious decision that I was not going to sit home feeling sorry for myself any longer, get my thyroid issues back under control, and realize that only I can choose to make myself feel better (yes, my dr. can tell me what I need to do but it is my decision to follow through or not), did things actually improve.
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535882 tn?1396580285
you have to get with the program or any program. why did you stop?? one doctor had you on a plan to gradually WORK you BACK INTO THYROID MEDS AND YOU STOPPED???? YOUR TESTS IF the info you post are  TRUE??  CLEARLY SHOW YOUR HYPOTHRYOID. ALL THE SYMTOMS ARE HYPOTHYROID , WE ALL HAD THEM, YET You fail to treat it , but continue to post your symptoms??/ why bother???? maybe you are depressed and don't have the motivation to get on the road to help yourself.  i understand !  maybe counselor can help you. in the meantime some exercise such as walking might help you.  maybe counseling first will help you make the right decisions about your health.   i will pray for you. i hope you get the help you need! .
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1139187 tn?1355710247
Whats really hard is, i got on .13 for 6 weeks.  This was the tirosint.  It was the very smallest amount they make.  I usually started off in the morning pretty well.  But after about 4 hours from taking it, i got these weird attacks.   They were brutal.  I couldnt do anything but sit down.  I would be at the mall with my wife, and she would have to help me back to the car so she could drive me home.  Its almost as someone gave me a hypnotic.  I couldnt speak, i couldnt think, i was basically like a body with no mind walking around.  I felt nauseas, my ears rung really hard,  It felt as though a posionous snake but me and I was feeling the effects of its venom.  My joints would pop, my back would hurt, i could not lift my legs to get up.  My body had electricity going though it.  My left foot felt like it was stuck in an electrical outlet and was being shocked.  I couldnt get up enough strength to say "help me" to my wife.  

I am waiting for the ZRT test to come back.  Not sure if this will help me but im being told it will.  

I know for a fact ive been hypo my whole life.  I never really knew about it until now whereas im thinking about it in hindsight.  But something happened to me Nov 2009 that changed everything.  It just happened one day, out of the blue.  I didnt do anything different that day, didnt eat, drink, fall, take drugs, etc.  

I dont understand also how my tsh is only at 7.50.  Why wouldnt it be like 60, or 100 with these symptoms?
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798555 tn?1292791151
"I dont understand also how my tsh is only at 7.50.  Why wouldnt it be like 60, or 100 with these symptoms? "

- your thyroid still does something, its not dead yet........

If you always have these attacks 4 hours after thyroid med - they key to solving this mystery is very simple.  OK?

Set up an appointment with some doc that gas monitoring equipment in the office to keep this affordable. The reduced price of Cobra is affordable with the government paying %65 of cost for the unemployed - so I hope you have some type of insurance still. Get there early take med and record all body #'s BP ec, heart, nerves ect. whatever they do. Then leave and come back the third hour for monitoring while the attack happens. After your doc witnesses this, then you might get some order to repeat this in a hospital setting where they can wire you up literally - like they do for sleep studies - it tells a lot in the brain and many organs. I believe I mentioned this last year. You need to find a doc to do this.
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798555 tn?1292791151
Solution # 2,, in addition to the one above this.

OK Bruce, I have read your post for a year or more, and remember your situation - most of it. At this point you need some solutions, not people telling you how bad they feel for you. I will be straight forward - its what you need.

You need to figure out these episodes after thyroid med, if that really is the cause.  A doc should have thought of this, but docs now days so reliant on lab tests, suck at problem solving.  No about placebo testing? Get in touch with a compounding pharmacy in the yellow pages (paper). Find a thyroid doc they work with.

Go to the doc, and ask for placebo thyroid testing. You will be given several compounded prescriptions, one at a time, but you wont know whats in them. One one them will be thyroid med. But they all will look the same since they are put in a compounded capsule. You take med for several days, and record if you had an episode or not. Then on to the next one, repeat. The whole idea idea is your brains hasn't a clue what you ingested, if you have an episode from a placebo capsule, its not from thyroid med, its from with in - and talking with someone will be the presription. If it is from thyroid med, then they will have to find out why.

This will provide valuable information you need to know.

Discuss this idea with health professionals - it WILL work.
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1445110 tn?1388213311
Bruce, Didnt the testosterone also make you have the same type symptoms as the thyroid med when you took it? And, are you still having those spells or symptoms everyday around the same time without thyroid meds? Just trying to clarify in my mind some of it. Feel Better.
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798555 tn?1292791151
In hypo thyroid males it is common for testosterone to be lower when thyroid is lower. It elevates after thyroid levels are optimal. Been there, done that. : )
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1139187 tn?1355710247
Moose,  about a month ago I drove to my Endo while one of the attacks were happening.  He checked all my vitals and they were fine.  

I get the attacks off the thyroid, but on the thyroid they are much worse.    The ears start ringing bad, I get dizzier, stiff neck.  This is right around 230 every day.   I've taken thyroid with propranolol as well.

Maybe I nee a time release t4?
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798555 tn?1292791151
Then you needed more than he was capable of doing in office. I thought these were so bad you couldn't drive.

Then see solution # 2.
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219241 tn?1413541365
"I dont understand also how my tsh is only at 7.50.  Why wouldnt it be like 60, or 100 with these symptoms? "

Bruce, I am in poo-land at the moment and my TSH is 2.75. I ALWAYS feel garbage when mine goes up over 1.0
It is all relative. The numbers DO NOT equate how someone will feel. I reckon at 60 I would be dead! Yet at 2.75 I feel dead already!
Having said that, I KNOW it is not JUST the thyroid levels that have me feeling cruddy.

I can't remember if you had your anti-bodies tested? They can sure knock you around too. Mine are still high 3 years after my TT!

I know as Lazymoose suggests that getting even an hour a day of non-health time, can help in not focusing on the bad stuff. I literally FORCE myself outdoors to do some gardening and it helps tremendously on my mental state. Sure, I still feel tired, but it helps me focus on something else!  

Cheers!
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1470552 tn?1300609507
Wow! poor Bruce ---everyone is really trying to help and that is so awsome
I hope Bruce you will try to help your self and listen to everyone here,
They all seem to know whats up.
My TSH was 67.6 a few months back and boy that was not fun at all. My GP told me she has never seen anyones that high before and said no wonder your not feeling well LOL
I was CRAZY or no I mean NUTTY! cuz Iam the HASHINUTTYLADY forsure!!

Hugz to all, Terri
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1139187 tn?1355710247
Moose I'm not kidding.  I called my wife lost and confused.  She had to walk me through getting there. I was delusional.
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393685 tn?1425816122
This post is closed. Links of all the conditions discussed will be posted below for reference.

Thank you.
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535882 tn?1396580285
10.4
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Any new up dates on meds.  I've been on Levo for about five yrs.  felt better in the beginning, but just feel ill most of the time. I've tried  four different meds, now on Tirosent.  I've felt so sick like I can't try anything new, and. Feel as though I'm dying.
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Please post your thyroid related test results so that members can better assess the adequacy of your testing and treatment.
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It might be better if you start your own thread and post your results there....this one is very old and Bruce's problems are fairly unique. I notice Stella has even said it is closed. Please let us know what testing you have had done : auto-immune, FreeT3 ? Has your doctor suggested adding T3 to your regime ? Tested for Vitamin D, for B-12 ?
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1139187 tn?1355710247
welcome to hell
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535882 tn?1396580285
bump
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I feel extremely shaky in the morning too.  When I lift my head it shakes for a few seconds and I also have that drunk like feeling.  Nearly everything you all mentioned I too experience.  I am newly diagnosed with hashimotos and I am on 112 MCG of synthroid.  I have noticed that once I am up and functioning I am not nearly as tired as I used to be but around 2:30, I am extremely tired until about 6:00 pm.  
I do not lie dealing with this. I want my life back.  
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Just because you are taking 112 mcg of Synthroid does not mean that is adequate.  Also, you may not be adequately converting all that T4 to T3.  If you will please post your thyroid related test results, along with reference ranges shown on the lab report, we can better assess your status.  Also, if tested for Vitamin D, B12 and ferritin, please post those as well.
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