Silent Thyroiditis - Is it true that if you need to be on meds for 8 months, you're hypothyroidism is likely permanent?

[readyforwhat]

I was diagnosed August 1, 2010 with silent thyroiditis.

My stats are (Range: TSH 0.40 - 4.50 // Free T4 0.8 - 1.8)

08/01/10 TSH 0.03

08/09/10 TSH 0.01

09/23/10 TSH 0.41

10/28/10 TSH 1.36 -- T4 0.96

12/6/10 TSH 3.80 -- T4 0.92

12/28/10 TSH 0.99

02/11/11 TSH 2.45 -- Free T4 1.1
*****PUT ON 25 MCG of SYNTHROID*****

03/28/11 TSH 4.18 -- Free T4 0.9
*****PUT ON 50 MCG of SYNTHROID*****

04/28/11 TSH 0.6 -- Free T4 1.1

06/06/11 TSH 1.23 -- Free T4 1.2

06/14/11 *****PUT ON 25 MCG of SYNTHROID, 5 of CYTOMEL*****

07/07/11 TSH 2.91 -- Free T4 0.9

T3 Uptake 34 (Range 22-35 Percent)

Free T3 2.9 (Range 2.3-4.2 pg/mL)

Ferritin 51 (Range 10-154 ng/mL)

07/14/11 *****PUT ON 50 MCG of SYNTHROID, 10 of CYTOMEL*****

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As you see, I was diagnosed with silent thyroiditis and have been on thyroid replacement medicine since February 13, 2011.  

(1) I understand (correct me if I am wrong) that being on thyroid medicines will suppress your thyroid function if it is functioning.  If I get off the thyroid medicine, will the thyroid start functioning as normal or will the thyroid become dependent and then have some extra trouble acclimating or accommodating me after being on medicine?

(2) If I want to try going off I would have to stick with it for enough time to see if your thyroid takes over.  How long of time do I need to give it to know if my thyroid is functioning again?

(3) If I do try to get off my thyroid medicine, at what point should I try?  After how many months of being on the thyroid medicine?

Thank you, Dr. Lupo.

[CMoore416]

I was on PTU for Hyperthryoid. My levels were 0.01. So over the time I was continually testing my levels and after 4 years I was on a steady low dose - one 50mg a day. I had remained in normal range for most of the time while on meds. PTU suddenly had a warning on the med about liver failure so my Endo said I should try coming off the meds and see how I do. (Im allergic to Tapazole/Methimazole) He also said lets test my antibodies and see where they are. If they are low, I would have a much better chance of it working and staying in normal range without meds. So my antibodies came back at normal at a level of 24 (which at one point they were 4500) so I went off the meds in Oct 2010. I tested every 2 weeks initially and now every 1-2 months. I have been told my some Endo's that it will come back over time - but Im choosing to believe I am healed and Im going to remain optimistic. I have enough other problems to worry about. So thats where I stand now. My levels are ok as of now - although I am experiencing now many PVC (heart skip beats) and palpitations.

[readyforwhat]

I had silent thyroiditis.  That is when you go through a phase of hyper then a normal phase and finally a hypo phase that may be permanent.  It's not as common and many don't know about it.  I definitely did feel all of those symptoms -- and more.  I am NOT feeling ok, even now.  I never tested positive for antibodies.  

May I ask, how did you know you were in remission?  I thought that if you are on these drugs that they suppress the thyroid and it doesn't produce hormones the same way.  So, how did you know?

[CMoore416]

Im confused but arent several of your TSH levels indicative of Hyperthyroid? You have levels that are 0.03 and even when prescribed synthroid - your levels are in normal range. Hypothyroid is when TSH levels are gretter than 5.0ish range. Do you feel hypo? (Sleepy, cold, fatigues, constipated etc) or Hyper? (Jittery, shaky, fast heartbeat, palpitations, cant sleep, bowel issues, hot)

When I looked up levels again to be sure I found this: "As of February 2010, at most laboratories in the U.S., the official "normal" reference range for the Thyroid Stimulating Hormone (TSH) blood test runs from approximately .5 to 4.5/5.0."

Therefore it would seem to me that your levels are running ok. I was Hyperthyroid (Graves Disease) and was on PTU for 4 years. I am currently in remission - for almost 1 year and have tested NEGATIVE for the antibodies - after testing extremely HIGH for the anitbodies in the past. Miracle? I'd say so - I should know - I prayed enough! But I just wanted to tell you that NOTHING is permanent. There is always HOPE for healing! I know - it happened to me. So stay positive and strong.

[Mark Lupo, M.D.]

The recovery may vary from person to person.
Slowly withdrawing thyroid medication -- usually cutting it in half and rechecking at 6 weeks -- is how we determine if a person can stop altogether.  Usually this would be about 4-6 months after episode and NOT in a woman planning pregnancy (who shouldn't be on T3 anyway, only T4).