Quitting l-thyroxine; tired of being under control of doc

[lululess]

I've had a total thyroidectomy due to nodules beginning to tangle around vessels--never was hypo or hyper thryoid but this was causing some problems w/beginning to black out and making my seizures worse.

Now I'm trying to get this regulated but my dr. prescribes only one refill. I'm very disorganized cognitively as it is thus I've gotten in one or two weeks late for my first two blood tests. during this time she won't call in supplemental l-thyroxine and meanwhile I go even more whacko for the an entirely unnecessary one or two weeks.

I'm doing my best to keep this organized along with going back to school, etc. however I resent my ups and downs with the thyroxine being made even worse due to my dr.'s lack of any flexibility in this manner. the drug store has given me emergency 3 pill refills even when I can't get her office to. School work goes down...more hair falls out, limbs become lifeless, the brain cells stop functioning. I'm having a hard time with this "hard line" approach as we try to reach my ideal dose. I do the best I can keeping things as organized as possible but sometimes one or two weeks late for my blood test is what happens in life....meantime I'm without meds.

Next I have to discuss taking synthroid with the NURSE vs. generic. I believe this should be my decision. I"m finding it difficult to concede control over so many aspects of my ability to function to rigidity that due to prior brain injuries, just may not be possible for me anymore. Is calling  in an emergency 3 pill dose or dosing for more than one refill all that unusual?

I don't care to live with my day to day functioning amounting to the whim of a nurse who cannot return my calls (to give me "permission" to take synthroid vs. generic not to mention all the other repercussions of the up and down rollercoaster by being "punished" made to take NOTHING if I'm one to two weeks late on my blood test. this thanksgiving really threw things off and once again I'm down to nothing and will likely wait three more days on nothing after my blood test tomorrow. AND the nurse will no doubt neglect returning my call to grace me with her "permission" for synthroid vs./ genericd. this is only the beginning; it's difficult being dependent on a drug one has to keep on hand at merely a reasonable amount to remain functioning and sane. All others I know are prescribed more than a two month dose.

I'm made the decision to stop taking it vs. having someone who knows nothing about me, cares to hear nothing about my situation, be in control of my life as a yo yo. SChool, emotional, energy, pain to move, everything. I don't see how this is right and can't live withit the rest of my life. You'd think l-thyroxine is being rationed throughout the us or something.

sorry, but i'm in a seriously hypo mode again after feeling great for ten days....i can't stand this all being in the hands of another; deciding whether I'm to be punished and go without if I'm a week late on my blood tests. Then BOOM--I get none at all.

Is this normal for dr.'s to exert such control to the point where it's detrimental--it's not becoming seriously mental and I don't feel it's worth it.

thank you,
and yes, I know how bad it feels; she put my meds off my first time of checking levels when I was late. First time so  I really didn't know what was in store but she sure as heck made sure I found out. Cost me an A in one of my classes.
tHank god the pharmacy gave me an emergency dose that time since her "Nurse" wouldn't call it in (3 days just to cover until my scheduled blood test!)

Sorry, I"m just losing it in hypo mode again. I'm afraid after seeing what it was like last time. and every day is more hair falling out and a ten time increase in gravity on my limbs (or so it feels), and sleeping when I don't even realize I'm about to conk out.....just boom, I'm out for hours. (missing something like an evening class of course).I can't even go into how unable my brain is to function lucidly.

Is this normal with most dr.'s? I feel I should be able to see an endocrinologist though none will see me as a cash paying patient (even paying up front as I always did in other cities--I now live in a rather backward town)

I want my strangling thryoid back.

thank you.

[blsdnsvd]

Sounds like you may want to switch docs...I've been there and done that and actually may to be doing it again. Our health is what determines our future and when you feel like "your out of gas", you have no motivation or energy for anything. I am also having difficulty finding my right dose and I actually had to switch to Synthroid vs generic when I first started the med's (two years ago).  I pray that all works out for you.

[gimel]

In case Knoxville is close enough for you to consider, I've sent you a PM with two names from the Top Thyroid Doctors Iisting for Tenn.

[gimel]

No it is not normal for a nurse/doctor to be quite so rigid about testing and new prescriptions.  Doesn't give me a good feeling that your doctor is going to be the kind you need.  

What you need is a good thyroid doctor that will treat you clinically by testing and adjusting the biologically active thyroid hormones, Free T3 and Free T4 (not the same as Total T3 and Total T4), as necessary to relieve symptoms, without being constrained by resultant TSH levels.  Symptom relief should be all important, not just test results.    You can read about clinical treatment in this letter written by a good thyroid doctor for patients that he sometimes consults with from a distance.  The letter is sent to the PCP of the patient to help guide treatment.  


http://hormonerestoration.com/files/ThyroidPMD.pdf

Going to an Endo does not assure you of a good thyroid doctor either.  Many of them specialize in diabetes, and not thyroid.  Also, many have the "Immaculate TSH Belief" and only want to diagnose and treat by TSH levels.  That does not work.  Many also use "Reference Range Endocrinology", by which they will tell you that a thyroid test result that fall anywhere within the so-called "normal" range is adequate for you.  that is also wrong.  Many of our members, myself included,  report that symptom relief for them required that Free T3 was adjusted into the upper part of its range and free T4 adjusted to around the midpoint of its range.  

It will help us a lot if you will post your thyroid test results and their reference ranges, as shown on the lab report.  Also, what dosage of thyroid med are you taking daily?