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IS THIS HOW YOU FEEL WITH HYPOTHYROIDISM?
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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 (shaky).  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 (shaky), 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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93 Comments Post a Comment
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Avatar_f_tn
Yep, that sounds about right!  You might want to try to try to keep away from the beer. I know, it probably relaxes you, but it really doesn't help. I use to enjoy a glass of wine, but not anymore. Here's the thing about Hashimoto's....yep, you will feel like crap, and no, your doctor won't be of much help other than trying to keep your meds where they're suppose to be. My tsh was high for ;;about 5 yrs.  It finally got to where it's suppose to be. I'm on 150 mcs of synthroid. But also, I've had thryroid cancer, ending up with a total thyroidectomy. I would get up around 7:00 am, take my meds, crawl back in bed. Get up at 9.00, with pains in my leg muscles, feeling like I'm hung over, It would take me around 4 to 5 hrs before I could function properly. Just tired of being tired? You're not alone. And let's not talk about the constipation. How about that brain fog? Yep, sure does mess up your head down to your toes. I've tried different time slots for taking my meds. The best is at 7:00 am for me. It allows me to eat a few hours later without getting sick. I just can't eat that early. And if you feel like you're going crazy, forgetting things, well....just the icing on the cake. You're not crazy, you will eventually learn how to  be patient, because it's all you have. It ***** big time my friend. But helps to see what others are going through. Hope I can be of assistance.  Take care. and Welcome to my world.
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1157646_tn?1343970728
Hi Bruce,
Yep you sound just about how I feel - I was diagnosed with hashi's october 2009, nearly one year for me!!  I take my T4 meds at 7am crawl back to bed and sleep some more, I get out of bed anytime between 9 and 11am...suffer brain fog all day most hypo days.  No energy till about 1.30pm and even then I dont have much energy at all.  During this time where I feel ok I attend uni 3 half days a week (never before 1pm - I just cant do it!) and try to get out and do things I have no classes.  The energy level quickly goes back to absolutely zero energy mid evening about 7pm...then its time for TV and lots of DVD's.  Eventually sleep around 10pm.  Its all part of the horrid hashi's!  Eventually though, levels and meds will be stable and hopefully we'll have slightly more energy and feel a bit better!!  Take care :)
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Avatar_f_tn
Not to sound negative, but it did take me 5 yrs. before I started to feel better. It just took that long to get my meds right and to get my tsh where it's suppose to be.My tsh was so high for most part.  The heart palps are not as had anymore, and believe it or not, I do have more energy than I use to. It just took such a long time for me because I had Hashi's and thyroid cancer. It's not easy, but if you can find a good endocronologist, one who's main thing is thyroid, then you're off to a good start. Most endo's are mainly treating diabetics and spend little time on thyroid issues. I'm on my 4th endo, and I do not regret giving the others  the boot. I've suffered for over 5 yrs and now I can say that things are getting better. Still having problems, just not as bad as it use to be.Wish you all the best of luck and good health.
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1097839_tn?1344583542
I feel a lot better than I used to and hope you will too, soon.

I never had the ringing in my ears you describe, but wiped out and shaky yes, I had that and it was horrible. I was off work and felt like a complete cabbage for the best part of 4 months Nov 2009 - end Feb 2010. I was still pretty shaky when I got back to work at the start of March, did a phased return for a month and struggled with it but have been full time again since the start of  April. I still feel I am a bit more tired than I ought to be and my thinking is not as sharp as I believe it used to be but the people I work with say I seem fine now and I am basically able to live my life though I'm still trying to improve my health back to get back to being 100%. I am MUCH better than I was.

I don't know why your doctor is saying you will feel fine when your TSH is 2. Everything I've read indicates that most people feel better with a TSH close to 1 and both FT4 and FT3 also need to be looked at. My TSH was less than 1 by the time I felt abled to get back to work. The most important thing is how you feel, blood test results should come second to that. The fact that you feel so terrible seems to indicate you are not yet on the right dose.

You will want to be re-tested every 6 wks and your doc should increase your dose till your results look optimal AND you feel a lot better. I went up in stages from 50 - 75 - 100 - 125mcg while I was off work. Most recently I have started trialling a low dose of T3 meds and that seems to be giving me a further boost back towards fuller health.  

I agree with Bet that the beer is probably not doing you any favours right now. I hope you won't think I'm a terrible hippy for suggesting it but seriously, why not try camomile tea as an alternative relaxant. i also think you should forget about the gym till you feel better. a slow gentle walk in the fresh air sounds more likely to be what you need right now.

Oh Bruce, so sorry you are going through this. We've all experienced similar and feel for you.

wishing you well again. peace and light.

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1139187_tn?1355710247
thanks for your kind words.  I cant figure out of the ringing is from not enough levo or too much levo.  I also added a tiny bit of t3 the last two days and have felt horrid..  I just have this .... unsettling feeling all the time.  Like i need a valium or something...  It sux....
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1139187_tn?1355710247
They want me to try "armour" because of the terrible ear ringing i get from levo thyroid.  Has anyone made the switch?

thanks
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Avatar_f_tn
Hi, I'm newly diagnosed with Hashimoto's/Hypothyroidism and I have noticed that each medicine dosage change/increase hits me like a ton of bricks for a few days and then things seem to level off.  This is true even for increases.  I was first diagnosed by a regular MD and prescribed Levothyroxine, which made me feel absolutely horrible.  I didn't feel symptoms of hypothyroidism until I started taking that medication specifically.  Once I found info on different forums corroborating my experience and suggestions that changing to a name brand thyroid med would help I got the med changed to Synthroid and had no problem.  

Last Friday my dose was increased from 25mcg to 50mcg and Saturday and Sunday I barely had the energy to take a shower, let alone do any household chores.  Did anyone else have this type of reaction during their initial dosages?  

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Avatar_f_tn
Bruce,  I've been taking some form of thyroid medicine for 4 years now for Hashis.  I only have 1/3 of my thryoid and it is pretty much atrophied now per the last ultrasound.  I felt all the things you are feeling when I wasn't on enough dessicated (Armour, NatureThroid) medicine and even worse when I tried Synthroid.  I went back to Nature Throid, upped the dose and felt great finally.  Then I used up my stash of unreformulated Nature Throid and went down hill again on the new version.  I am now on ERFA (Canadia thryoid) and loving it.  I will say I did better on the reformulated Armour than the reformulated Nature Throid.  It is certainly worth a try.  You might be allergic to some of the fillers in the levo or you might not be converting enough T4 to T3 which is the active  hormone your body needs to function.  I also tried adding Cytomel (synthetic T3) to my Synthroid and hated the side effects.   Good luck.  Hang in there and when you find the right medicine and dosage you will feel better. You are fortunate your dr wants to atleast try the Armour, most docs wont. FYI, my TSH is .02-.05 usually (it is always very very low when taking dessicated so make sure they run the FREE T3 & FREE T4 & does according to that and not the TSH).
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1139187_tn?1355710247
My dr. gave me .30 mcg of armour and told me to take it.  I told her i thought that would be too much.  I told her I should break in half and take half.  She told me to do whatever I feel more comfortable with. How do you guys feel about this.?

also id love to hear what people say about carandbri's post above.

Thank You
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Avatar_f_tn
The first year of dosage changes for me was by far the best and worst.  I was so happy to have finally found the issue and to have started to feel myself coming back, but it was up and down the whole way.  The new dose won't take full effect for a few months, which is why they usually wait two months before testing again.  Don't worry about dosage changes.  The fog, the exhaustion, the depression, etc. will come and go despite dosage changing.  Nothing is instant and a good balance will take years.

As for Brucergoldberg: lucky you!  You are taking Armour, the one and only drug that seems to treat all of my symptoms (I was on 2 grains).  Your doctor is right to leave part of this up to you.  You are the judge of what is too much and enough since you are the only one who can feel whether or not your symptoms are being alleviated by the dose.  All the doctor can do is run the blood work and adjust accordingly.  I will forever say trust your doctor, but go with what feels right for your body more than anything.  Numbers can only do so much.  Some people feel better running a little on the low side, some are better on the high and that is not something a doctor can judge just from looking at your chart.  

PS:  I am jealous, Armour is a tough drug to find, they have been back ordered for months and months here and I have been forced to go back on my levo dosage.  I hope it works as well for you as it did for me.
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1139187_tn?1355710247
What is a grain?
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Avatar_f_tn
1 grain = 60 mg of Armour and 65 mg of NatureThroid
Siince Armour has T3 in it (which has a short half life, about 4-5 hrs) a lot of people feel better splitting the daily dose in half or thirds (if the pill is big enough to split).  I can't take mine after about 3pm as it keeps me awake too late (but I am taking 4 grains as I don't have a thyroid anymore)
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Avatar_f_tn
Thank you both for much insight!  :-)
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535882_tn?1396580285
yea that sounds like your under-medicated. sounds alot like what i went through. it's good they are increasing your dose. give it  like 3 weeks. till you start seeing a difference. i bet you'll notice a big improvement in a month. with me also.  you might have some weird days till you adjust hang in there! . i also had real terrible ringing in my ears. it's still there but now it's so low i don't really notice at all during the day and it's low at night in bed sometimes gone. i think its a clear sign that your not at a balanced level and when thats right or low you'll know your close .got checked out by ear doctor but nothing was wrong with ears. and they don't know other than loud noises what causes it , they suspect its thyroid imbalance, so hang in there. Bruce,, it will get better.   Kevin
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1139187_tn?1355710247
i stopped taking my meds today.  i wanted to see if i am better or worse.  day started off great, felt great full of energy.  death feeling set in about 2 pm.  was hoping to feel better today.  Time to start over :(
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1139187_tn?1355710247
I thought I was the only one with these crazy side effects especially the BUZZING and TINNITUS....

http://www.prescriptiondrug-info.com/threads/Levothyroxine-side-effects-D66356.htm
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393685_tn?1325870933
Bruce, I think you are floudering with too many things you are trying to comphrehend. Between the 2 posts - this one and your Headache post w/ your labs posted - you almost have the answers right in front of you and you are not seeing things.

The labs you posted had shown your Free T3 very low. Here the TSH is a 7.93 which is high - this classically says you are very hypothyroid and your meds are not satisfying the disease to relieve symptoms.

I know the ill-feelings of this disease can be maddening - but you have to track yourself accordingly to see here you have improved with these changes and where you aren't

Have you started a journal or utilized the thyroid trackers here at all?

Now - you've stopped your meds altogether- which is another "change" again. These are hormone "induced" drugs Bruce and you need to stay consistant for week on one particular dose to see where these drug will build up the system to increase function as a whole.

Stopping will not help you. It could make recovery longer too. You need to be consistant on these meds.

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1139187_tn?1355710247
ive done 37.5 for about 3 weeks now.  i feel the worse  right after taking the levo  in  the morning.  it really bothers me that these doctors are telling me that my t3 will go up  as proper tsh is reached and everyone on here tellig me otherwise.
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1299122_tn?1281044016
Bruce, you have suffered with the tinnitus for several months now. I know you must be so frustrated! In the posts above you stated that the doctor gave you .30mcg of Armour and told you to take it. First, Armour is available in milligrams, not micrograms. 30 mg of Armour is 1/2 grain. This is a low dose. Above you say that you have taken levo in the morning.
Which are you taking? Levo (Synthroid, Levoxyl, levothyroxine?) or Armour Thyroid?
I switched to Armour after my first month on Levoxyl. I didn't have tinnitus with the Levo, but I did have terrible pressure behind my ear drums and also parethesia (pins & needles like bee stings all over my body with the synthetic hormone. I was desperate to change meds. I was able to get Armour.
My Free T3 after taking the Armour. I started on 60mg, went to 90mg, became a bit hyper and reduced back to 60mg.
I think with Hashimotos, some of us still have some hormone sputtering out especially if we have nodules. Add the hormone meds and at times, I think we may be over medicated. It is a roller coaster ride.
I do know that stopping & starting the meds is not going to help your hormone levels become stabilized. The hormone levels build in your body over time.
Good luck Bruce!
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393685_tn?1325870933
The doctors believe whole heartedly Bruce that the T4 meds will convert exactly as the thyroid does to maintain wellness - so many of us didn't have that happen as best as it was told to us so we learned and advocated what we learned to try other measures to see if things that we learned would work.

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1139187_tn?1355710247
I only took armour for one single day.  I was going to switch and then my mailbox got bombarded with emails from people on here to read the warnings about the new armour.  I went to their website and saw all the negative comments.  So I quickly went back to taking the levo generic.  I take 1 x .25 mcg +  1/2 x .25 mcg (i break one in half) for a total of 37.50mcg.

also check out comment number 8 and 10 on the levo website:


http://www.prescriptiondrug-info.com/threads/Levothyroxine-side-effects-D66356.htm

that would describe me as well.

I am thinking of taking propranol (inderol) to help with the tremors.  Is anyone else taking this?

thank you
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219241_tn?1357815389
Boy! I better not tell you my day to day routine and battle! I get depressed even thinking about telling you! I don't want to scare anyone who might read this, but all I can say is; 17 years later, I have had enough of playing ping pong with doctors. My pillow is now going to need surgically removing from my head. 3 years ago I had the thyroid out. I think I would have rather died from the cancer. At least back then I had the shock of it, came to an acceptance, but this is a living nightmare.....Just do what you can, when you can and no more. That's my motto.
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1139187_tn?1355710247
redheadedaussie,  I thought about you today when I was at my worst.  I thought that no matter how bad I was, you will always feel worse.  You are in my prayers..   Also id like to say that for a person with a bad thyroid problem, you have beautiful hair :)

I was able to order my armour from canada today.  Thanks to you guys for walking me through it.  I need to figure out how to take it though.  I am completely confused on what to do etc.

Thank You!
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1299122_tn?1281044016
I was concerned about what I'd read about the new Armour too. I use a very sharp pair of scizzors to cut the small tablets onto a spoon, add a bit on honey and lick it off the spoon. It breaks through the cellulose binder and releases the hormone more quickly. I then do not eat for at least an hour.
I think changing the foods we eat is helpful. I have reduced processed foods (hard to do since so much is processsed) and although I realize you disagree about gluten-free diet, I have cut back for experimental reasons and I do seem to feel better, even if its in my head : )
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Avatar_m_tn
I've always had ringing in my ears, constipation, cold hands/feet for my entire life.  And I have a basal resting body temp of 97 or below, higher cholesterol, heart palpitations (PVT's), family history of Thyroid, joint aches, recent weight gain I can't seem to shed even with exercise, susceptibility to colds.  All symptoms of low Thyroid.

My TSH came back and it is 1.61.  Which is "normal".

Dr. wants to do nothing.  I could NOT talk him into doing a FT3 & FT4 tests when he did the TSH lab.

What do I do next?
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Avatar_f_tn
I think you find a new doctor next.  Any doctor who refuses to test FT3 and FT4 and relies only on TSH isn't worth keeping.  You will remain sick under hs care.
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649848_tn?1357751184
You can find labs online from which you can get the FT3/FT4 tests.  Check out healthcheckusa.com.  I ordered TSH, FT3 and FT4 for $85; they e-mailed me a lab order and I went to a local lab for the blood draw.  They e-mailed my results on the second day after the blood draw.  

If you get them tested and take them back to your doctor, maybe he will listen; OR find another doctor and take the tests in to save time.  With that blood work in hand, you might be lucky enough to get a script on the first visit.
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Avatar_f_tn
I was diagnosed with Hasimotos.  THe way they diagnose is by testing for THyroglobulin Antibodies; mine are high at 1939 ref range is <20.  AND Thyroid Peroxidase antibodies which mine are 265 ref range <35.  My Tsh is 0.05, T3 2.6, T4 1.2.

I am on Levothyroxine 100 mcgs, and Cytomel for the TS at 5 mcgs.  I see an endocrinologist specialist.  I suggest you go to one and have the antibodies checked, as this determines thyroiditis or Hashimotos as it were.  Good luck to you.  Mona
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1139187_tn?1355710247
I just had the graves test run yesterday.  They are looking to see if i have hashi and graves at the same time.  Arent I lucky.
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1445110_tn?1388213311
I also am hypothyroid due to thyroidectomy in 2006. I had been on 125mcg of levo this whole time until i started having terrible symptoms again, weight gain, anxiety, panic attacks, heart palpations and terrible ringing in my ears every morning and sweating, insomnia. Just sometimes feel like i am going crazy. my doc increased my levo to 137mcg due to tsh being high. Now after six weeks my symptoms have gotten so bad I run to the ER thinking I am dying or having a heart attack or stroke. Now after a gyn appointment I had a hormone panel run and am definitely having menopause to add on top of this. It is comforting in a way to hear that I am not alone in my thyroid HELL. But, am so sorry for anyone that lives with this terrible disease. I also was hyper with a goiter before my surgery. I completely know how it feels to have both. Sometimes all I can do is pray for god to heal me of this.
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1139187_tn?1355710247
Were you hashi?   I have heard the hashi stays
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Avatar_f_tn
Dear Bruce,
I recommend that you read "The Thyroid Solution" by Dr. Ridha Aram. It's available at any bookstore or online. It's extremely comprehensive and once you read it you will understand the science behind thyroid problems and the medications prescribed for the various things that go wrong. Also, since you live in Dallas, you might consider going to this doctor, who is in Houston, teaches at Baylor, and runs a thyroid clinic in that city. It's not as far as Florida !

I understand that you are frightened and exhausted. Me too. However, you are doing your body a disservice by changing types of meds and dosages all the time without giving your body time to adjust.  The other responders are right when they tell you to start keeping a chart of your TSH, Free T4 and Free T3. Also build in which meds you are on and the dosage. This is the only way you will get a picture of what your body is doing so that your doctor can adjust the meds accordingly.

I had tinnitus and spent a lot of time and $$ on neuro-ortolaryngologists who misdiagnosed me. When I was finally diagnosed with thyroid nodules and went on proper meds, it mostly went away. When my meds were off, it came back. It's frustrating. But getting hysterical about it doesn't help. Different types of meds ( i.e. brand names, generic, Armour, T4-T3 combinations ) are very individual, as we all have different metabolisms to begin with. When it's very bad you might consider asking your doctor to prescribe a small dose of Xanax to take before bed to relieve the ringing when you sleep.

Hashimoto's is an autoimmune disorder, and yes it's permanent. My sister has it. Part of her discomfort initially was that she was allergic to wheat, and this is quite common with Hashi's. It contributed to her achey (achy) joints and muscles. She went off wheat for about a year, then it was gradually reintroduced into her diet. She is now stable on her meds for quite some time and is ok. Unfortunately w/ Hashi's the body goes back and forth between hypo and hyper as the thyroid becomes dysfunctional. She had 4 young children and got through it. So will you. Her doctor is also in Houston.

From your picture, it looks like you have a young child, and I can imagine the responsibility of being a family man is adding to your distress. Stress is NOT your friend, Bruce...try not to add more by beating yourself up on top of everything else. Hang in there, buddy, and read that book.

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1139187_tn?1355710247
I have been on 37.5 levo for almost 6 weeks now.  This is the worst ive ever felt, ever.  I've been through some pretty tough things in my life but this is the hardest.

I have not slept solid in 5 weeks. I have nightmares.  My body aches, I'm hot, I'm dizzy.  I saw a guy today who is an expert in armor etc.  He is an internal medicine guy who has hashimotos.  He told me he thought .30 armor would be too much for me.

I'm still planning to go to mayo clinic in Florida.  Too many weird symptoms for such barely low levels.  

This is really weird.  I had a protein synthesis test with electrofusion which came back positive yet I have no other symptoms. In English this means I had a preliminary cancer test positive, but nothing else points to cancer.  Everything else is normal.  They think hashimotos made the test positive.
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1445110_tn?1388213311
I know exactly what you meant when you explained your day. My day starts out just about the same with my ears ringing so loud and weakness, dizziness and I have extreme anxiety. I have actually come to the conclusion i am going crazy and will never feel good again. I have suffered with thyroid problems since i was 21 and now i am 48 and menopausal. Mine started off after my 1st son was born. I was so hyper that i weighed 98 lbs. leaving the hospital after giving birth. The doctors would not listen to me. I kept telling my OB doctor that i was dying. He said oh you just had a baby you should feel bad. By the time I finally by the grace of god ran into a friend of my moms that was a nurse told me what was wrong and that i need attention fast. By the time I finally got to my appointment in Atlanta ga. i was having a thyroid storm so bad that i could have died. My child was only 2 months old. Sorry, could go on and on, needless to say ive had a thyroidectomy in 2006 and still am feeling like hell. These doctors dont know what they are doing or either this disease is just something that to me is just pure HELL.
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1445110_tn?1388213311
sorry , didnt see your earlier post and yes i was told that i had hashi and graves before the thyroidectomy. Thanks for the answer, i was not sure if i would always have hashimotos after the surgery. I now think sometimes that i shouldnt have had the thyroidectomy but i was developing a large goiter and having trouble swallowing. Good luck to you , i am so sorry for the way you feel too. I would not wish thyroid problems on anyone. I am so worried about my three sons developing it. Two of them are showing some symptoms, I think or maybe i am just so paranoid. God Bless......
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1139187_tn?1355710247
I am told that you would still have the hashi's if the thyroid is removed.   I dont understand why i know so many people with this disease yet none of them have the problems that I have.  

I seeked out this board because of the problems.  I guess people that dont have any problems wouldnt be on here...
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1139187_tn?1355710247
Do you have a weird churning in your head, like a grinding feeling?
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1445110_tn?1388213311
Bruce, you are not alone in the symptoms you are having. Yes I have that noise in my head along  with the ringing in my ears every morning. Here it is 5 am where I am and that is what woke me up. Sometime, I wake up with my body temperature so weird like hot as heck on the inside but my skin is cold on the outside. You see that you are not alone with this disease. I just had my blood work done and all i get from the doctor is it all looks fine yet i am having hyper and hypo symtoms (symptoms) and feel just terrible. I have to take xanax for nervousness and panic attacks. I just feel my whole body is outta whack and am getting to the point of not being able to hardly function........do you have popping in your ears when swallowing?........take care
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1139187_tn?1355710247
Sorry this thread got lost in my watch list.  Yes I have the same exact thing as you Hessykat.  Whats weird is it comes and goes.  Sometimes I feel "okay"  but most of the time i feel like you do.  I dont know how to explain it, but it comes and goes.  It hits me when i least expect it.  Its 8:45 pm here.  I felt ok from 6:00 til about 30 minutes ago.  Next thing you know my ears are ringing, back hurts, muscles in legs are sore and i just want to lay on the floor..
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1139187_tn?1355710247
Older post however I have updated my current symptoms list.  This is me with hashimotos and low testosterone, NO treatment for almost a month until all my tests are completed.
This is day to day with the worse being from about 1-3 every day.

Symptoms List for Bruce Goldberg
(listed in order of severity)

1. Lazy all the time, no drive, beat down, lack of energy. Just want to sit, or lay.
2. Chronic Fatigue
3. Ear Buzzing left ear constant/ high pitch sound off and on both ears
4. Heart Palpatations (feeling beats off and on)
5. Physical Anxiety  / Shaky hands (mainly left)low attention span
6. Low Sex drive and libido, no nocturnal erections
7. Joint Pain mainly in back
8. Confusion, lack of cognitive ability, poor concentration (brain fog), poor memory
9. Pain in foot onset from surgery 18 years ago
10. Thirst/Nausea episodes
11. Extreme Hunger at times yet no energy to eat
12. Sensitivity to loud noises and bright lights, easy irritable
13. Cant fall asleep / Un refreshed sleep / Ambien useless at times
14. Feeling overwhelmed, unable to handle difficult tasks
15. Eyes bother me, easily irritable

Wake-12 pm Anxiety
12 or 1 -3pm  symptoms worse, confusion worse
3-5 symptoms best, hunger sets in
5-10 fatigue worse
10 pm bed time
4 AM anxiety wakes me
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219241_tn?1357815389
You stole my list! Ha ha! Except for the erections, coz I am a girl, could be my list.
I must admit though I don't get much anxiety as much as I do when I am hyper.
The thing for me is not focusing on the symptoms too much. Otherwise you go nuts trying to live!

Hashimoto's is a rotten disease and just yesterday I was ready to chuck in the towel and say, That's IT! I am not getting up at all today!!! But I did, and I had to stop myself from feeling overwhelmed and just accepted that it was a bad tired/brain fog/reaction to stress day.( had to put my 18 year old cat down and he was purring the whole time...waaah!)

Sometimes you just gotta roll with the punches and just come up with a new way of living. Not always a fun way, but it is the only way. I have an attitude of don't worry about the things you can't change and fix the things you can. I have an artificial left eye. Can't do anything about that, but I can fix my spider veins. I am deaf in one ear, can't change that, but I can listen to music and still enjoy it. I have Hashimoto's can't change that, but I can live in a way that allows me quality of life, albeit a bit slower than usual, but that's all I can do.

The antibodies going on a field trip will always whack the body around. It effects the brain as well as the body. There  is no cure for it.
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yes all of that and more!
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actually at this point i have no dignity.  I debated whether or not to post that whole list.  But honestly, who cares right?  i had to carry a jug of pee around for 3 days with me at the mayo clinic.   all your dignity goes out the door..
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yea i know the feeling , it takes it away from you, but who cares!! just get feeling better thats all that matters.   thats the health system unfortunately. treat you like a piece of meat, plus what's to feel bad about? so what , symtoms (symptoms) from being sick.
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Again Bruce it's about focusing on the good and not hold on  to the bad stuff. Man, I can tell you a thing or two about lack of dignity, but I don't have the room to post my book!

It's all too easy to focus on that feeling of Woe is me...but harder to find anything good. It IS hard! If you knew me personally you would wonder why I am not a drug addict, a child basher or worse. I have had a horrendous life and one that was in the newspapers. YES, I have MY bad days too, this disease ***** big time, but you gotta look at something bigger than your illness.
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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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You'll be fine MM... I got your back.
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I think I have a better word for brain fog.....  Dementia
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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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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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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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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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What's a blood patch, Bruce?
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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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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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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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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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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 (shaky).  

bruce
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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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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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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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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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Who suggested taking the testosterone?
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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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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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excellent observation abby51.
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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 (shaky) 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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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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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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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 (symptoms) 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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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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"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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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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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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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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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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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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"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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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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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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This post is closed. Links of all the conditions discussed will be posted below for reference.

Thank you.
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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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welcome to hell
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