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amount of thyroid med to take

I recently lost weight from 175 pounds to 125 , I used to take 88mcgs of generic thyroid meds, but now I can hardly take 25 per day , I am over 50 and have no thyroid, I am currently very hypo due to the side effects of a name brand thyroid med I had to get off of , my doctors started yelling at me and demanding that I take at least 50 mcg per day, but the meds gave me anxiety , insomnia, mania, could not eat , I felt as if I were going crazy.  but I am worried about not getting my levels up fast enough.  the doctors insist that I take a higher amount because I am so hypo.   I am trying to start at about 12 to 25 mcg per day and build up slowly.  I have been so tramatised  by the whole situation.  the doctors are the ones that made the mistakes from the start and now I am having to pay to price. I don't know if I can build up enough thyroid med in my system on such a low amount   I need help
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649848 tn?1534633700
COMMUNITY LEADER
Ooops, I just comments on this thread and it didn't post... I'll see if I can "scare" it out, by posting this short comment; if not, I'll have to try to re-create my answer later...
Helpful - 0
649848 tn?1534633700
COMMUNITY LEADER
Okay... let's back up and try to take one thing at a time... when did you have your thyroid removed?  

When did you discover you had Graves Eye Disease and start taking the Prednisone?

When did you start taking the 88 mcg of Levoxyl?  Was that your starting dose? Or did you start lower and work up to that?  It's usually best to start at a lower dose and work up slowly to the therapeutic dose, especially for those of us over 50.  

TSH does not cause symptoms, such as those of the mania you describe; TSH is a pituitary hormone and its only function is to signal the thyroid to produce thyroid hormones.  Since you have no thyroid, TSH does nothing, so it's totally irrelevant in your case.  Something else was causing the mania and other symptoms - perhaps it was too high Free T3, but you said you didn't have that tested, so we can't know that.

1/4 of 88 mcg is 22 mcg and if you can take that, you should be able to take 25 mcg as it's only 3 mcg difference... It's possible that you're reacting to the fillers/binders or dyes in the pills.  Have you considered trying a 50 mcg pill which has no dyes and split it in half to get 25 mcg and see how that works... Some people can't tolerate the dyes, so they get their dosage by taking multiples of 50 mcg pills.  

Another option is a medication called Tirosint.  It's a gelcap that has no fillers/binders or dyes and is completely hypoallergenic.  The lowest dosage is 13.5 mcg, so you could start out really low for a few days and work your way up.  Tirosint is quite expensive and may not be covered by many insurance companies, but the manufacturer has/had a program through which you can get the med at reduced cost, or possibly, free, if you qualify.
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Avatar universal
I started in 02/2015 on levoxyl 88mc per day , the reason I switch was because I was given a bad steroid prednisone for graves eye disease it caused me to not be able to take the generic 88mc per day, I could only take half of the dose, if I tried the whole dose I got bad anxiety.  I was in the process of tapering off of prednisone when I was given the bad generic dose of 1 mg , it acted like a 10 or more, but I did not realize this until after a month when my face started to puff up like I had cushings,  and started to have bacterial infections.  so I went back to my old one half of 5mg to continue  tapering but by this time it was to late.  I had severe stomach problems with bleeding and had to have a colonoscopy, and had to get off all together to soon.   doctor put me on levoxyl 88mc did ok at first but noticed I started losing weight because of stomach problems, due to prednisone.  did not notice at the time but levoxyl was causing blood pressure to go lower along with heart rate after I took it every day, it was suppressing my adrenals, but did not put this together at first but brought it up to my endo,  that I read that people with adrenals problems should not take this med , she stated this was for people with addisons disease. continued to take until after I had to ER visits, due to heart problems and blood pressure and extreme mania that lasted 3 days due to TSH of 0.00.  this was about oct of 2015 when I got off if 88mc. she then put me on 25 mcg of levoxyl   was on for 4 days of hell, shakings hands extreme anxiety high blood pressure before I could not take it.  took several weeks to get back to normal, but in meantime TSH dropped to 127,  this is when the nurses got on the phone and accused me of non compliance,  wanted me to go on 50mc or 25 mcg of syntharoid  and increase after several weeks.  I can barley take 1/4 of my old generic 88mcg,  I am 56 yrs old.   did not have problems until the steroid and levoxyl .  I am so scared.  my free t4 was low but at the moment I cant find the number.  no t3 was done to my knowledge.  I already had PTSD  but now I have flash backs from doctor visits and what if I can get my numbers up.  I have been taking my meds every day since 2010 and no major problems until this year,  I an scheduled to see an adrenal doctor the last part of jan of 1015 and a new thyroid doctor that has knowledge of these problems   the 1st part of feb 2015. but the nurses at family practice and endo were so horrible and stress me out so bad, I have had flash backs due to the whole situation.  I can go to the ER   all they will do is take more blood , and every time blood is drawn,  my TSH   seems to  take a large that normal drop,  but my hair is not falling out, my skin is not dry, but I have no appitite, I guess due to being hypo,  and depressed, I have also been suicidal.  I feel trapped between a rock and no answeres .    all I can do is take the 1/4 of the 88mcg and some days I add a little more to make sure I get enough  need help fast.  I have never been in this situation before  
Helpful - 0
649848 tn?1534633700
COMMUNITY LEADER
I forgot to ask how long you'd been taking the 88 mcg of the name brand thyroid med before you began having these side effects.
Helpful - 0
649848 tn?1534633700
COMMUNITY LEADER
Why not start by telling what your current thyroid hormone levels are.  You should be getting tested for Free T3 and Free T4, along with the pituitary hormone, TSH... Please be sure to post the reference ranges for any labs you post, since ranges vary from lab to lab and have to come from your own reports.  

Were the anxiety, insomnia, etc the initial "side effects" you had from the 88 mcg of med?  Those are, typically, symptoms of over medication and, usually, would require, simply a decrease in dosage, not "getting off" the med.  

Also, please explain how many doctors are dealing with situation and what mistake they made to begin with.  

What med are you currently taking, at what dosage and how long have long have you been on it?  What was your previous med?  How long were you on the previous med/dosage?  It's okay to tell us the names of the meds... Some people have reactions to the fillers/binders/dyes in the pills.  50 mcg pills of some brands have no dyes and some people do well  obtaining their dosages from 50 mcg pills or switching to a brand called Tirosint, which is a gelcap and has no fillers/binders/dyes...
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