Raising my dose of levothyroxine without a doctor's consent

[6060842]

Hi,
I have posted to here many times about my thyroid stuff.
In August of 2009, my TSH was 97.  Then it went down to 26 after several months.  Then it went down to 10 after several more months.  Mind you, it took more than a  YEAR to get it down to 10.  Then, after that, it raised to 12.  I missed my medication for 2 weeks as I pointed out in an earlier post.  It took 2 weeks of taking it again to feel marginally better.  But I am still in a fog, lightheaded, spacy, very depressed and anxious.  The room sometimes feels a little "spinny".
I was talking in chat with a friend who is an MD. He was emphasizing the importance of taking about 1.7 mcg levo per kilogram.  Earlier this summer I weighed 250 lbs.  Now I probably weigh about 225 lbs.  I am ***extremely*** dissatisfied with the slow progression of the resolution of my TSH level.  This doctor I was in chat with said I need to get my dose up around 150 mcg.  I am currently taking 75 mcg/day.  I know you're not really supposed to titrate a levo dose without a doctor's supervision, but would I be at extreme risk if I were to take 150 mcg (two 75-mg pills) instead of just one a day?  My sypmtoms are distracting and debilitating and I am just so sick of this.  Could we discuss the pros and cons of titrating the levo dose, and if 1.7 mcg/kg is really the desired level?  THANKS.

[Barb135]

Most of us have gotten tired of the "thyroid merry go round" we find ourselves on. But the only way to get well, is by testing the proper parameters - Free T3 and Free T4, along with TSH - and adjusting those FT levels so as to alleviate your symptoms.  

Dosing based on TSH is never a good thing; if the doctor you "chatted" with didn't tell you that, I wouldn't put much stock in what he says.

Like goolarra's TSH, which never goes below 17, mine never goes above 0.01, so you can see what a disaster we'd both have if we dosed by TSH alone.

In addition, I agree with red and goolarra that doubling your med all in one swoop would be a foolish thing to do.  Getting well with thyroid issues is a long, sometimes uphill battle, but with the right help/doctor you can get there; is takes tons of patience and when you've run out of patience, you will need to summon more, and yet more.  

I spent over 2 and 1/2 yrs on the merry go round, before I got to a point, at which I could function well.  It's taken several more months to "feel well".  

If your doctor refuses to treat your symptoms, you will need to find one who will.

[goolarra]

If you titrate your own dose, won't you run out of meds before you can refill?  The answer is more likely finding a new doctor who will test appropriately, as redhead said, FT3, FT4 and TSH.  

Also, I completely agree that doubling your dose is very foolish.  Thyroid meds adjustments have to be made in very small increments...25 mcg at a time at MOST.  Retest after six weeks and re-evaluate from there.

Without FT3 and FT4, TSH is a very unreliable diagnostic of thyroid status.  I have a pituitary issue, and my TSH has NEVER gone below about 17, and I am euthyroid..  There may be more going on than you suspect.

Your TSH level aside, what are your symptoms?

[redheadaussie]

You can change your own dose, but do be aware you'll probably get your head bitten off by the doctor if they find out. You will need to keep a good check on how things are going,. Keep a symptom journal faithfully, and make sure you get tested 6 weekly.

  It would have taken the 2 weeks you mentioned to get back the required dosage in your system after having missed 2 weeks. That's how it works. it has a half life of one week, so you miss a week it takes a week to come back to before!

  The NORMAL procedure of dosage to body weight is generalised. It is not always appropriate for some people with their thyroid levels. One person at your weight may be taking a higher dose due to a different thyroid problem.

  Jumping up twice the dose is very silly and would defineitly require a doctor's supervision. You could go hyper very easily.

  It would be far more sensible to go up to 100mcgs for a short time (6 weeks) and see how you feel. You are not going to get instantaneous results no matter how frustrated you are with your TSH. Also it is NOT the TSH which is going to show how much your thyroid medication is working. It is the FREE T4 which will show that, and then the FREE T3 which will show it is being converted correctly.

Have you had those tests done?