TSH levels

[birdinia]

I recently had some blood tests run.  One of the results is that my T3 and T4 levels are in the normal range, but my TSH level is elevated (5.5).  Can you tell me what would cause this?  What are the health risks if I choose not to take levothyroxine?  How much would levothyroxine actually help?

[Mark Lupo, M.D.]

This is called subclinical hypothyroidism (ie mildly sluggish thyroid).  Sometimes it is transient and does not need meds.  I usually repeat levels in 2-3 months to confirm it is persistent unless the patient has significant symptoms.  Treatment is not absolutely needed, so decisions must be individualized.  Usually we start treatment when TSH is >10.  The most common cause is Hashimoto's (test TPO and TG antibodies).  If you have no symptoms, then there would be little benefit from levothyroxine.  Even if there are symptoms we must remember that "thyroid symptoms" are so non-specific, the symptoms may be unrelated to this slight lab abnormality.

[birdinia]

I've been taking levothyroxine (on my doctor's advice) for one week.  Already it seems I'm feeling side effects.  The most prominent one being an increase in anxiety.  I'm already taking clonazepam (.50 mg/day) and sertraline (100 mg/day) for anxiety/panic attacks.  And those medications were working until I started taking levothyroxine.  I've also noticed I seem to be kind of gittery and my muscles feel weak sometimes.  Are these normal side effects from the levo?  If so, will they go away eventually?  If they will, how long does it normally take?

[nancib]

Thank you, Dr. Lupo.  

Your response, that the medications did not damage my thyroid, was very comforting.  

Now that I'm on my own, rather than freaking out over just what my next step should be, I'm beginning to feel a little more courageous.  I've decided to stop taking any more thyroid meds, while continuing to track my lthyroid lab values.

In the past, stopping the medications was never an option.  Although I did suggest it to the last two doctors, I was warned that if I did NOT take the meds as instructed, I could find another doctor.      

Thanks, again.

Regards,
Nanci

[Mark Lupo, M.D.]

I usually don't respond to posts other than initial questions, but noticed your question.

The TSH is clinically the single most useful test for thyroid - there is little debate in the academic thyroid world regarding this.  The problem is that thyroid symptoms are very nonspecific, so even with an abnormal TSH a patient may have many symptoms caused by problems other than thyroid.  

You had a trial of thyroid hormone (many trials over 5 years actually) with no improvement in symptoms despite normalizing ("fixing") your TSH - in this case, unless the TSH is >10 w/o meds we usually observe without treatment.  The medications did not damage the thyroid.

Hope that is helpful.

[nancib]

P.S.  I have no thyroid antibodies.

[nancib]

Dear Dr. Lupo, you said in your reply to Birdinia that a TSH under 10 means that sometimes a thyroid is mildy sluggish, transient, and does not need medications.

I went to a doctor a little over 5 years ago with the single symptom of "tiredness."  A blood test was done, and when myTSH was found to be elevated (8.5), the GP freaked and started me on 50mcg Synthroid; thereafter, he tested regularly, but only the TSH.
I told him I was becoming even MORE tired--not that he ever listened to me.  Steadfastly going only by my TSH, he raised the dosage of Synthroid to 75mcg.  My body practically came to a standstill.  I went to a new doctor.  

The next doctor became nervous when she noted my TSH was just a tad over 1.0, and said the 75 mcg was WAY too much and that I was now hyPERthyroid.  She lowered the Synthroid from 75mcg to 25mcg--still no improvement.  This is pretty much the way things have gone through the years as I've struggled to find a doctor to help me.  
      
It's been an awfully bumpy road to be on for more than 5 years.  The bumps have shaken me to the point where I feel nothing in my body is in the right place anymore.  

I have been to countless doctors (MD,s & Endos), and have been given different combinations of thyroid meds (T3, T4, T3/T4) .  Each doctor has taken the dosages up, then down and all over the place....all to no avail.  During this time I have steadily worsened to the point where I NOW have practically every hypothyroid symptom on record.  

Most of this time, aside from what I understand now to be "worthless" thyroid tests, the only testing done was for TSH (of questionable worth) which has ranged anywhere from below 1.0 to 17.0 and anywhere in between.

I've finally struck out on my own--a tough place to be, but no tougher than where I've been......I don't think.
    
My last lab tests, TSH, FT3 & FT4. were done on June 5, 2009, and are as follows:  

TSH (third generation), 5.17      REF: 0.40- 4.5 mIU/L
FT3, 217                                 REF: 230-420 pg/dL
FT4, 0.9                                  REF: 0.8-1.8 ng/dL

I guess what I'm asking here is if there's any hope for me.  I really think my thyroid "problem" might have been simply transitional, "a mildly sluggish thyroid."  If this is true, it's a VERY tough pill to swallow right now.  This would mean I've been sick and in solitary confinement (totally out of commission, life) for over five years all because I listened to doctors and took their thyroid meds, or should I say, "took their snake oil."

I'm beginning to believe the ups and downs my body has suffered over these years WAS caused by thyroid medications.  This begs the questions:  Has my thyroid now been so damaged that I now NEED to take the thyroid medications, and try to find the right combination and dosages, OR, is it possible at this late stage to wean myself off them?  I'm afraid it may be too late for the latter?

People, beware of doctors bearing gifts of wellness!
(Sorry, Dr. Lupo; this does not necessarly include you.)

Nanci