Hashimoto's with recurring low TSH

[SuzyQ1105]

I've been on 100mcg L-Thyroxine with normal TSH levels. Recently my TSH came back 0.1. Am I supposed to continue taking my medication as my Dr states then follow in 4 weeks with more labs? I feel terrible with all the hyper symptoms. Should I be on a beta-blocker or just stop taking my meds? I've lost weight and eat like a pig. My hair's falling out and I can't sleep. Bp & HR are both high. So why does my Dr want me to continue taking thyroid medication? And Why do I periodically go hyper? Should I have other tests besides TSH levels?

[Barb135]

Actually, I'm doing quite well, now, though my TSH stays really low, which isn't a problem for me, but it does produce a "knee jerk" response when the doctors see it, so I'm constantly fighting to keep my dosage up where it needs to be.

I really do hope you can get a full thyroid panel (TSH, FT3 and FT4), now, so you can see exactly what's happening with you; otherwise you will continue shooting in the dark, and won't be able to get off the roller coaster.  Doesn't matter what kind of doctor orders the tests, as long as they get ordered.

Good luck and be sure to let us know how you turn out.

[SuzyQ1105]

Sounds like you've really had some serious doctor issues. I'm sorry you've had to go through that for so long, and so glad for you that you found the true culprit. I hope you're feeling close to normal these days.

You're absolutely right about self-medicating. I generally wouldn't advise anyone to do that either. That's why I'm calling my PCP tomorrow and letting them know what I've done and ask them if she will consider mailing me a new lab prescription, this time including the FT3 & FT4. And maybe if they agree they'll also prescribe for me my own beta blocker. If they refuse, I think my neurologist (whom I see for chronic migraines) will do all of the above. I'm a health care provider myself (respiratory therapist) but know enough to know this isn't my area of expertise.

Barb, you're truly a compassionate person.

[Barb135]

Well, I don't normally recommend self medicating and it really can get hard to know what's going on.  Do you have enough of the 50 and 88 mcg pills to last for 4 weeks?  You need to be on a steady dose for at least the month before you do labs, because it takes that long for dosage change to take effect.

It really would be better if you could get your doctor to test now, including the FT3 and FT4,  to see what your actual levels are, on the 100 mcg.

Since your doctor isn't currently testing FT3 and FT4, s/he may be one of those that believes TSH is the "be all, end all" of thyroid testing.  Many doctors have this belief - one of our members calls it the "Immaculate TSH Belief", and they refuse to test anything else.  These doctors normally keep their patients very ill.  So if your doctor refuses to test FT3 and FT4, you might have to think about finding another; especially, since s/he's leaving you for 4 weeks with a TSH of 0.1 and hyper symptoms before retesting to find out what's going on.  

For many of us, there comes a point, at which TSH is pointless.  I can use myself as a prime example. As soon as I started on thyroid medication, my TSH dropped to the basement and for the past 5 years, has consistently been at < 0.01 - 0.01.  The doctor who diagnosed me began adjusting my med, based on that TSH, but I was really still very hypo.  I, too, had the high blood pressure and heart rate and ended up on atenolol.  When I finally got FT3 and FT4 tested, by another doctor, my actual thyroid hormones were way below range, yet my pcp was decreasing medication to get my TSH up.  It's taken me 5 years to get  my levels up where they need to be and my TSH is still living at < 0.01.

[SuzyQ1105]

Thanks. I'm supposed to have bloodwork done in about 4 weeks while staying on my levothyroxine in the meantime. I'll suggest to my doctor to get the FT3 & FT4 in addition to TSH. Maybe by then I'll have reverted back to within normal TSH levels. But in the meantime I may not be compliant with my levothyroxine. I basically took things into my own hands because I needed some relief. Was able to mooch some Atenolol from my mother and started taking 50 mg. It helps calm the tremors & anxiety, brought my bp & HR down closer to normal and I'm no longer so quick to lose my temper. I also found some 88 mcg Levothyroxine which I started instead of the 100 mcg. Tomorrow, I'll let my dr's office know how I've been feeling & what I've done about it. You've been wonderful.

[Barb135]

I'm sorry, I meant to say TSH should NOT be the deciding factor when diagnosing or treating a thyroid condition.

Your thyroid may not be completely burned out, so could still be overproducing at times, or you could have nodules.

Without the testing for Free T3 and Free T4, you really have no idea what might be happening, because so many things can change TSH.

[SuzyQ1105]

Thank you Barb135. Actually I was diagnosed with Hashimoto's about 30 years ago. I'm now almost 65 y/o and periodically go hyper. This particular incidence is way worse - similar to the time I was diagnosed. It's difficult to get through the gatekeepers in the office of my primary care provider to just get an answer to the questions that brought me to this forum, which is: why continue with my levothyroxine until I somehow self-correct? If there's a reason for that should I be taking a beta blocker, perhaps) for the tremors and the other unbearable symptoms? That's what I recall taking when I was first diagnosed. I do have calcium channel blockers if that would help. I must also mention that I switched from taking estrogen pill (at the same time I took my L-thyroxine) to a patch. Perhaps that made my thyroid dosage too effective? Again, thanks for your advice.

[Barb135]

You need to talk to your doctor about getting Free T3 and Free T4 tested, along with the TSH.  Those are the actual thyroid hormones and will give a much clearer picture of what's going on. TSH should be the deciding factor when diagnosing or treating a thyroid condition.

Some of your symptoms are hypo; some are hyper.  Early stages of Hashimoto's can be characterized by periods of hyper, then swinging back to hypo.  That maybe what's happening to you.  Additionally, you may have nodules on your thyroid that are leaking hormones independently of the thyroid.  Have you had a thyroid ultra sound? If not, you should ask to get one.