Levothyroxine makes me feel awful

[imastarr]

I am 38 years old and have been taking levothyroxine for about 6 years. Developed hypothyroidism after the birth of my last child at age 32. I was up to 175 mcg. About an hour after I was taking it I felt awful. Kind of lethargic, I have episodes when I feel like I'm going to faint, I feel mean and tired, I just really don't feel like myself. I quit taking it for 2 months just to see if the symptoms went away, and they did but I was totally exhausted and my TSH went from 3.5 to 38 (yikes). So I am back on the levothyroxine. Within 5 days of taking it the symptoms returned. I was started back at 100 mcg. Has anyone else had similar symptoms? I have requested that I be put on Synthroid instead of Levothyroxine, doc says the levo. works because my TSH stays within normal range while I am on it. Anyone have any suggestions.

[Applecore]

If you mean my tsh being suppressed, it is not normal range yet.  It started out at 900 and something 6 months ago, it is as of 2 weeks ago 7.  I am due for a blood test next week.  I can't wait.  I still feel fatigued and foggy in brain, sometimes my mind doesn't think right and I can't seem to stop it.(I don't know how else to explain that)  The days and they have just started, that I feel pretty normal have been altogether about 10 I am maybe a little hyper and really have energy and go go go.  Then I wake up and boom I am feeling blah foggy, irritable, frightened of the way I feel with now anxiety in head instead of body.  Good thing is I don't take any lorazapam.   I am so tired of figuring out how I feel.  My counselor told me not to figure it out, just wait until I get my blood test.  I have seen you answer people that some of these things may be from other things than the thyroid.  I think that is scary also.  I don't want to deal with anything more.  Some of my fatigue might be concerned about what has happened to me and is still happening.  The more I read about the after-effects of removal of your thyroid, I don't want to go through more symptoms.  I certainly had hypo hell and don't want it again.  Can they remove the nodules without removing the thyroid?

To address the falling,  I had been falling alot before I knew that my thyroid was sick.  The doctor told me not to wear any shoes that didn't have a back.  I got rid of all my backless shoes and haven't had a problem since.  He said the toes have to grip the shoe to hold it on and throws you off balance.  

The endo did tell me that my nodules were  producing hormones again.  I don't know what happened.  I am writing a list of questions to ask him based on what I read in this forum and my own personal symptoms.  I will let you all know whenever I see him.  

I am thinking that if I have too much hormone in my body I would be acting hyper not hypo.  I really have both symptoms that is why the endo said we had to go by my tests and not symptoms.  Oh
what confusion there still is.  I do believe that the Lord has it all under control and he said if I find somebody to take my thyroid out correctly to go ahead and do it.  Is there an incorrect way to remove it. I know some people may not believe you can hear from God but I do and have and try to follow His Word.

I really appreciate all that you and everyone says and take it all in.  I have a lot of things to deal with in the future besides the thyroid as to figuring out what to do about my eating and cooking.  Am still awaiting the thyroid book I ordered by Mary ?     lol lol lol,  linda

[GravesLady]

no, but both are T4 supplements.

is your TSH still suppressed.  

to stop hyperfunctioning nodule, surgery is best.  

I feel ok with my meds.

I have a nodule.  my levels swing in and out of labs hyper reference range every 10 week test.  I haven't figured if nodule is hyperfunctioning or wrong med. dose. but I am getting close to figuring it out, I think and I hope.  the only effects I have that might be from nodule is that every month I have a day or two where I have awful hyper episodes which are very over whelming. in other words I go into overdrive. the more I go the more hyper, the more hyper the more I go, to where I start dropping and/or breaking things, tripping, even over my own feet. the only way to get a handle on it, is to stop what I am doing and just rest, the rest of the day/night.   I am afraid I am going to break my neck one of these days from a fall. this summer I already cracked ribs, bummed out my knee and a week ago broke my wrist. hyper overdrive.

[Applecore]

Does anyone get symptoms after they take their meds.  I seem to on some days get anxious about 1-1/2 hrs. after taking levothyroxin.  Does anybody else react that quickly.  I also wonder if anyone out there has had the RAI and it didn't kill the nodule and it is still producing hormone and puts it in whenever it wants to and then I feel bad.  I hope I am not the only one.  lol linda

[Applecore]

Is levoxyl and levothyroxin the same medicine ?  

[wish i didn't]

Does anyone know how much mCi of RAI they were given?  I was found to be hyperthyroid around the time I had a hysterectomy (with complications).  My thyroid scan and uptake were normal.  Over the next three mths, I was very symptomatic and my thyroid labs worsened until my TSH was 0.01, t3 elevated (don't remember # now), t4 nml.  Now after more research, I realize that I probally had sub-clinical hyperthyroidism.  I thought that I had Grave's disease when I took the RAI and now I get sick to my stomach when I think about it.  I ended up going much more hyper (TSH 0.004) and then less than 2 mths later, very hypo (TSH 84).  When I went really hypo, I lost my voice for a few days, could hardly swallow, could NOT stay awake, concentrate or think and ended up going on (hopefully temporary) full disability.  Also that week my ears started ringing and have been ringing ever since (early JUNE)!!  I cry all of the time now, many times for no apparent reason.  I also probably had IC (interstitial cystitis-a chronic painful bladder condition) not previously diagnosed and I've now seen evidence that RAI can worsen other auto-immune diseases (which IC probably is).  Also experiencing constipation for the first time in my life.  Prior to all of this I was a very healthy 47 yr old female who always ate well and exercised.  I feel like my life is ruined.  My thyroid labs are all WNL now but I still feel like ----.  I feel like my body has been through WW III, physically and mentally.  I'm on synthroid 75mcg and they just increased me to 88mcg on Sat and Sun.  It seems I'm on more than other people I'm reading about.  I also seem to be symptomatic after taking the synthroid--irritable, fatigued, some palpitations but w/o the increased HR like when I was hyper.  I haven't gained weight cuz I've been too depressed to care about eating much.  (98 lb)  Also experiencing constipation for the first time in my life.  From what I can find on the internet, the typical dose of RAI for Grave's disease(which I didn't even have) ranges from 3-15 mCi.  I had 20 mCI.  HELP!!!!  

[GravesLady]

also, Levoxyl is suppose to not have any meat based ingredients, and I am a vegetarian

[terri thyroid]

I too prefer Levoxyl and take 37.5 as 75 was too much and 25 too little - took years to find right dose and brand as many doctors have you wait so many months - if you don't feel good don't hesitate to tell your doctors office - we are all different and some people like natural and some find the t3 too strong - keep trying with your doctor until he/she finds one you like.

[Applecore]

Well this is my third try to post.  I hit the wrong button again.  I am on 37.5  of levothyroxin and it seems to be working.  I go for a blood test next week and will find out more.  I was on 75 and then 25. one was too much and the other not enough.  I don't know what to expect but do EXPECT to get back to normal.  I feel much better until I believe the nodules which were supposed to be killed by the RAI start dumping into my system and then I feel really bad for a couple of days then ok again.  Has anyone else had this happen to them.. I don't know what the next step for me is.  I hope we all find the peace we need to live with.  We all react differently to this disease but there seem to be common symptoms that we all have one time or another.   The endo told me I was sensitive to the thyroid hormone.  I am sensitive to all meds really.  It is a walk and we have to be patient is what I am finding out.  I really am looking for a miracle I guess.  lol linda

[GravesLady]

I take levoxyl.  It has the less amount of ingredients/fillers etc., in it then the rest of the t4 medications.  11 years taking it, I  have never had any problems with it.  I do have problems with other non-thyroid pills with their fillers and dyes or colorings.

Changing brands might effect your levels and you might have to start from scratch, which sounds like your doctor is not willing to do. However, I don't thing it would be all that challenging. It sounds like he is doing what is better for him and not his patient, you.

[terri thyroid]

yes - I've been at this balancing act for 6 years w/ 3 endos, countless pcps, etc - have finally found pcp who is cross between naturopath/internist - after years of being overdosed by "endocrinology specialists" bringing tsh down to under 3 and I'm seeing double - double vision for months and then eyesight went - I had 20/20 due to corrective surgery in 1995 - now I wear 2 different pairs of glasses -  anyway -  doctors constantly overdosing me and heart problems, sick, stomach shutting down, yellow eyes, finally I have concluded I can't take any thyroid, whether natural or synthetic and I've tried them all & cytomel too - I cant take pill everyday or every other day or whatever - I have to stayy off until I feel a little tired and even then only 1/2 dose - I'm feeling better everyday, running faster and farther than I have in 6 years - and I too went more and more hypo - not knowing thats what it was - until after 2nd baby was so bad- moron doctor finally figured it out but by then I diagnosed myself - I don't give a damn if people think I'm "playing doctor" my doctor knows what I'm up to and I feel better than I have in years - I go for an mri soon just because it has never been checked and I'm also going to seeing what bloodwork says - its only been 2 weeks but after 6 years of blood tests, logging symptoms etc and always going hyper on every combination of meds possible finally realized I have to take only as needed - my husband recomended doing this 5 years ago and I said "oh, no - that wouldn't be right" well it's working - I do many other health things besides but no herbs or outrageous alternative stuff - I read every thyroid book there was and then got depressed so I just accepted I would never feel good - then found this chatroom and would read everyone w/ Hashimotos and how they suffered and kept staying on same consistent dose with their doctor saying you should be fine - test results look great - again - I dont have thyroid cancer, graves disease, etc - just plain old Hashimotos - thought I was only person who was so "sensitive" to thyroid meds until I read this forum - well - gotta go - off to the gym - If I have helped any I hope so - I'm not a doctor nor am I trying to play one - but going hyper is so dangerous and our body slows down after it hits the wall and then we think were hypo - very confusing - my best wishes to you - if your'e interested I'll tell you what I've been doing - don't know if it will work forever as we are at the mercy of what our bodies do sometimes but I plan to fight this thing until I find balance -