Thyroid Cancer / Nodules & Hyperthyroidism Forum
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Dr. Lupo will be out until 6/21, the forum will be closed to new questions until then.

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I know the Dr. is out.  I just would like to know if anyone here has felt the same as I do now.  I never really felt that bad before being diagnosed as hypo in Jan. 06 tsh 11.6.  Put on 50 mcg of levothyroxine.  After 6 weeks re-tested and tsh was more than doubled-26.5.  Referred to endo who increased meds to 100mcg daily.  I am 6 weeks into this dosage and will be re-tested in 2 weeks.  Why don't I feel any better?  I actually feel worse.  I have bouts of sobbing and profound sadness.  I think before this nightmare began I cried twice in my life.  Now I just cry all the time without even needing a reason.  I also have these attacks where I feel that I'm a caged animal and I need to escape.  Escape from what?  I just feel like I want to jump out of my skin.  Almost like I drank a gallon of caffeine.  I don't think it too much meds because I haven't lost a pound despite following weight watchers religiously and attending an exercise class 4 times a week. And I still have that hound dog look - puffiness over the eyes and pouches under them.   My Mom was diagnosed with thyroid storm 50 years ago and had her thyroid removed.  I wonder if this is the same. I'm not even sure what thyroid stom is.   Does anyone have any thoughts?
Avatar universal
You said you have been on the 100mcgs for six weeks already?  I would get your blood tested now.  I felt similar when I went hypERthyroid (I was hypo, but took too much meds too fast and went hyper).  I felt exactly the same...like I was jumping out of my skin.  See if you can get your blood tested now instead of waiting an additional two weeks.  Good luck and let us know how you made out if you can.  =)  Hang in there!
Avatar universal

Good morning.  I am struggling to get diagnosed as I have all the symptoms, but not the test results to back it up.  I find it so interesting all the people with these hugely out-of-whack tests that don't have symptoms and the same number of people with symptoms that have "normal" test results...makes you wonder.

What I wanted to suggest is having your adrenals tested.  In doing a lot of research, I've seen mentioned over and over that increasing thyroid meds when your adrenals are fatigued can make your symptoms worse.  Perhaps that is the case with you.

If you haven't already, go check out the website: www.stopthethyroidmadness.com.

They have adrenal self-tests and a whole forum dealing with adrenal issues and thyroid.  They can answer questions and there are other topics that may help you find other possible causes for your reaction.

I wish you luck in your efforts to regain your health.
Avatar universal
When the cats away the mice will play... Anyway I am having the same problems with the thyroid meds.  Am hypo too but am just crying everyday at the moment going nuts.  I had a biopsy and am waiting results.. Friday. Hang in there!!! There are more of us out there.  I have also been a little naughty.  I started the peruvian herb maca to balance my endocrine system so maybe I could get off the meds also I have lost 2 kgs but only after I started the maca so I don't where I am at but god I wish I could stop crying and feeling angry.
Avatar universal
I will repost this when the doc comes back but can anyone shed some light on this in the meantime? Mom was diagnosed with hypothyroid in 2001 her tsh was 5.05 On November 13, 05 my moms tsh  levels were 3.65 on levoxyl .50 mcg has symptoms of chocking and gagging at the slightest touch of her neck area, she quit smoking on nov-18-05 she is only 47 she was sent to an ent on jan-16-06  her tsh was 1.26 he said she had thyroiditis he upped her dose to 100 mcg she then got the symptoms of hyperthyroid on feb13-06 her tsh was .03 he then took her off the levoxyl in between all these times she is going in and out of the er with her heart rate going up to 165 just from moving her finger they did ekg and said she was fine sent her home  they said she has anxiety because she kept coming to the er one had even said she was crying wolf now picture this my mom is sitting in the wheel chair slumped to one side not moving now how is that anxiety she is still suffering from the gagging chocking feeling and wearing a heart monitor her heart rate is speeding up to 180 into super ventricle tachycardia and sinus tachycardia she did not have any problems with her heart till they upped her levoxyl to 100 mcg. on march-2-06 she was put back on .50 mcg her tsh was 4.75 and they did thyroid antibodies her thryoglob ab was 41.1 and her thyperoxid ab was >1000.0 april-3-06 her tsh was 18.84 and she started seeing an endocrinologist he  upped her to .75 mcg  saying she did NOT have thyroiditis and her thyroid IS NOT ENLARGED april-17-06 tsh 4.65 on april18-06 she went to er they said she had a sphenoid sinus infection they put her on keflex - no changes then they tried augmentin no changes then it was erythamiacin still no changes she still has the painful gagging and chocking and now she has a full puffy feeling below the breast line she stopped antibiotics on may-20-06 she still has same symptoms as from November and now the endocrinologist says she HAS HAD thyroiditis since November but refuses to do another antibodies test he has put her on methylprednisone .4 mg 4x a day for 6 months and did not give her anything to help keep her from getting osteoporosis  and after looking at the same paperwork as before now he says her thyroid IS ENLARGED she had asked about removing the thyroid if the thyroiditis did not go away and he said they do not remove the thyroid because of thyroiditis unfortunately he is the only one in our area that accepts her insurance. Her primary doc did an antibodies test on 5-22-06 and her thryoglob ab was 43.6 and her thyperoxid ab was >1000.0  my mom has been threw 4 primary cares 3 ents just trying to get help for her symptoms they cant figure out what’s wrong so they send her to the next one she is also seeing a cardiologist and he has done numerous test and he says her heart is fine some days my moms heart rate will not go past 85 bpm but she can feel it pounding hard and other days if she lifts her hand up an inch her heart will go up to 130 and not go below 100 all day long no one once to help her they don’t give her answers and don’t explain anything is it safe for her to walk around? Will this go away? Is there anything I can do to help her get over it sooner? Is this life threatening? I’m having a baby due June 24 I am the only one my mom has to depend on I would really appreciate any answers or help I feel like I’m at the end of a cliff and don’t know weather to jump or fly.
Avatar universal
I would try to get her into another endo even if you need to go out of town. It sounds like she is going back & forth between high & low thyroid with high being more dangerous. Tell her not to get discouraged but don't quit trying until you get the help you need. Can you post the normal ranges of the above tests as the vary from lab to lab.
Before seeing another physican I would ask for all of her records ,from the physicans she has seen, so they are at your fingertips.
If you live in the US and when she starts feeling the same way...high heart rate & choking sensations take her to your ststes university teaching hospital's ER. I'm sure there is someone there that takes your insurance that they can refer you too.
Please, don't ever presume that just because the physican is a specialist ,as in your endocrinologist, that they know what they are doing. Medicine is just like any other profession, you have the good & the bad. It's too bad Dr. Mark is gone because he is one of the good ones.
You can even type thyroidologist into your search engine & maybe you can find someone to help you that isn't too far away from where you live.
That is sometimes what Dr. Mark recommends to those posting with similiar situations.
You need someone who knows what they are doing.

What is a Thyroidologist
A thyroidologist is trained in internal medicine, endocrinology, thyroid hormone
analysis, ... What are the usual reasons you should see a thyroidologist? ...

Here's a web site for you to start with.
Lists doctors who are experts in diagnosing and treating cases of thyroid disorders.
Let us know what happens. Talk to you soon. Any more questions...we're here. OK.   God Bless You & your mom, TJ
Avatar universal
This is a better web site to find a thyroidologist.

Avatar universal
Thank you for your comment i have been trying to seek help out of state we live in idaho and our so called endocryonologist we have is even out of state but our primary doc has agreed to set here up to go to the washington state university i dont know if they will help or not i know there is good doctors out there somewhere but im kinda giving up hope in these ones i have yet to find one even out of state even the emergency room gives you the run around i will check out those sites and will keep you posted thank you again willow
Avatar universal
Where ever or whomever the endo, make sure the endo deals with a lot of thyroid issues a year.  At lot of endos mainly deal with diabetes. Thyroidologist would be ideal.  Once a patient is initially seen, a lot of doctors will consult over the phone with Labs done in home town. Check with the doctor if this is possible.
It sounds like your mom is Hypo trying to Hyper/Graves' which is not unusal and the normal course for most Graves'.  Or she could be both Hyper/Graves' and Hyper/Hashi.  Whatever, both are equally as dangerous if left untreated for too long.  Or maybe something else is going on, but one thing is known, your mom needs medical. Get copies of her Labs with the Lab ranges for future references.  I hope you get her sucessful help and treatment soon, she sounds real sick, and, this is not easy on you either.  

Good Luck!

Avatar universal
kyotee, I live in Idaho where at maybe I could be of some help.
Avatar universal
So sorry for your mum her medication is really out.  The thryoid can cause increased heart rates and gagging.  It is horrible.  I really hope you get her help fast.  These endcros seem to be playing with the blood tests and not the patient.  She may need help from a group of doctors.  I see the encrinologist, immunologist and gyno who work together to give me normalcy you need to ask a lot of questions. Keep copies of all results for each doctor so they can compare and monitor.  Hang in there it is a tough road.  If your mum is having trouble moving she can use a dry towel to stimulate her cells with rubbing if she doesn't have swelling. Sorry I am in Europe or I would help, I've been down that road.  Take care and hope things work out.
Avatar universal
Washington State will probably be a really good place for her to go as they are up on all the newest data, if they are a teaching hospital, & those types of hospitals tend to dig into the condition more to find the cause of the signs symptoms.  They also have all types of physicans available.Have her paperwork available but let them start fresh with her as far as diagnosis. Only give them the tests they ask for because sometimes a what one doctor or radiologist thinks is normal another may not.  Like I said in my prior post, if she gets bad again or any worse put her in the car & drive up to Washington Univ. ER & she will be evaluated & start treatment right away.She sounds like one sick cookie.
I feel your pain. I said when I was diagnosed with Graves that the name of this disease is appropiate because you feel like your going to die anytime. Her symptoms sound so much like what I experienced when my Graves was discovered it's scarey...I slept upright(when I slept...insomnia) for almost 6 months because my choking would worsen when I was lying down. I was so close to a thyroid storm by the time I seen the right person that it wasn't funny. My heart rate was up in the 180's at times too. 4-6 stools a day, 60# wt. loss, tremors. anxiety, panic attacks, mood swings, hair loss, palpatations, fatigue... along with the rest of the symptoms is just a nightmare & I really feel for your mom & you.
DO NOT LET HER RUB HER NECK OVER HER THYROID AREA...My endo told me she did not even want to touch mine wben I was so symptomatic because it causes the thyroid to release even more thyroid hormones.
Don't fool around with the other doctor's she has seen take her directly to the ER at Washington State. Sometimes you have wait 1-2 mos when seeing a specialist for the first time. Ig you take her to their ER she will be red-lined through.
Take care of yourself too. Remember we can only do what is humanly possible. God Bless you, TJ
Avatar universal
Please don't laugh, but can hypothyroid cause changes in bowel movements?
Avatar universal
No one is going to laugh.

Yes,hypothyroid can change bowel movements.

Normally constipation.
Avatar universal
I would like to see if anyone has any suggestions.  I have been having hypothyroid symptoms for about 2 yrs now.  The doctor where I lived in FL refused to acknowledge any problems because my labs were in the "normal range" althought at the bottom of the range.  Last year, I moved to TN and the symptoms seems to be getting worse.  I have gained so much weight that I feel awful, always tired and sleepy, can't even sit down to watch TV without falling asleep, hair getting thinner, scratchy throat, hoarseness and at times my voice just goes.
I have had a thyroid ultrasound, which showed nodules.  I then had a biopsy of the largest nodule, which was benign but the final diagnosis says "benign consistent with nodules of multinodular goiter".  The ENT that I was sent to by my PCP insists that it is not thyroid causing my problems and suggested very strongly that it was "hormones and depression".  My TSH 2 yrs ago was 1.26 and in 5/06 it was 1.01.
I have 2 sisters and my mother that have been on thyroid meds for years and they all tell me I have the same symptoms.
I am so frustrated and am to the point that I don't feel like going anywhere because I continue to gain weight and look so bad, plus being exhausted.
Any suggestions?????
Avatar universal
A doctor worth his salt would not treat a patient by symptoms alone.  
According to New England journal of medicine -  "The symptoms of both hyperthyroidism and hypothyroidism are non-specific and can be mimicked by other conditions. Thus the practice of prescribing thyroid treatment on a clinical basis alone without biochemical confirmation carries potential risks"
Nodules are quite common occurring in more than 50% of the world's population and among healthy thyroid people. The likelihood of developing a thyroid nodule increases with age and in part represents the aging process of the thyroid gland. Although most nodules are harmless and do not require any treatment at all unless the nodule is a hot nodules that is causing hyperthyroidism.

Your TSH is in the healthy normal range, however both FTs would have told more about your thyroid situation. Also presences of antibodies with normal levels might indicate that your thyroid is in the process of failing (showing potentional thyroid problem) but not failed yet or enough to reflect in your levels. Suggest having levels check on a regular bases to keep on top of of the situation.

Also, you might want to have a metabolic profile/Adrenals done.  
Some of symptoms of adrenals are similar to those of thyroid and taking thyroid meds when the adrenals are fatigued can make symptoms worse, therefore you might respond negatively. A metabolic profile/Adrenals is a combination of blood tests run together that evaluate kidney and liver function, electrolyte imbalances and blood sugar disturbances. A complete blood count with a metabolic profile can help pinpoint other basic disorders. Somet endos don't want to pursue the problem if they decide that it's not an endocrinology problem. In that case you'd check with a Family Practice Doc, Internist, GP or your OB/GYN to see if they would order these tests and help determine what's causing your symptoms.

Good Luck!    

Avatar universal
You can try here for thyroid doctors in Idaho

Avatar universal
im in rathdrum idaho but willing to travel anywhere to get her well there has been some changes as you can read in the next post to nurselpn
Avatar universal
i took her to the er at sacred heart in spokanne wa. on june first and they released her on the ninth she is still the same but a hair better they said her iron was a quart low and her iron pills were not working so they put her on an iv she was also dehydrated and her potassium was low gave her med and iv fluids which helped alot we were seen by the resident physishions and they did some test but were more concerned in finding out why she was anemic i told them the truth her family doc swares its hereditary and refuses to give her iron says it wont help, her endo says he has everything under control shes fine her ent says hes stumped and would refer her to someone else but wont cuz the primary care should her cardiologist says its ok for her heart to go to 185 she just needs to ignore because shes high ansiety. although the iron pills never worked they did not set her up to get the iv drip of iron but they were concerned about that the most i am getting copys of the records monday. the resident physicians did a hormone test and checked her tsh and antiboties every night she was there but they listened to her endo and uped her methylprednisone to 60 mg for 7 days then gradualy decreace she took that for 2 days and now her heart goes up and stays high i called the resident physician today and she swares the methylprednisone wont make her heart race and im not stupid i know it does she said to follow up with her primary care i quickly reminded her that he is the reason why she was there in the first place cuz he dont know what to do! GOD IS THERE ANYONE WHO CAN HELP?
Avatar universal
I recently had MRI, CTCSAN and bone scan which among other things showed that my thryoid isn't "flat",  I am sceduled for an ultrasound.  What the heck does that mean though?  I have Graves disease which is in remission right now as all of my blood work is normal after 4 years on meds.  Does anyone know anything about this? Is "not flat" the same thing as enlarged?  I'm confused.  Thanks for input.
Avatar universal
Hi Forum
This is my first time here. Six weeks ago I was diagnosed with severe hypo & Hashimoto's with a TSH of 92. (that's not a typo - it was 92!!). My cholesterol was 319. I was put on 50mcg Levothyroxine. After six weeks I felt like a new person, lost 22 lbs. went for bloodwork. My TSH dropped to 6.2 and my cholesterol dropped to 211. I felt great. I was then put on 75mcg Levo (it's been one week now) and all of a sudden I feel horrible! Fatigued, muscle pains. I'm wondering because my doc told me I was also positive for ANA - which I think is from the Hashi. She referred me to a rheumotologist. I'm wondering now if I'm feeling lousy due to the increase in levo or something else (fibromaylgia maybe??) I know my TSH level is still high but why would I feel worse with a higher dose of levo? Any ideas?? Thanks
Avatar universal

Just wanted to tell everyone that since Dr. Mark is away, you might want to check out this fairly new website. It has lots of good information and forums to ask questions. It;s at www.stopthethyroidmadness.com

Avatar universal

Your body is probably trying to adjust and heal from being hypo, to normal levels.  It takes time to heal - it probably will take as long as you were sick/hypo. That is, if you do every thing corrert - per doctor, per health, per meds., etc. The symptoms of both hyperthyroidism and hypothyroidism are non-specific and can be mimicked by other conditions so it is wise that your doctor is checking other avenues of health as well.

Good luck and feel better soon.
Avatar universal
WOW, you got me!  You'll have to ask the doctor that one or wait until the doctor here comes back in a about 9 days. It just might be your doctors own lingo. (?)
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