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Off Synthroid

I have been on Synthroid for 22years.  Never felt right.  The maximum dose was 75 mcg per day.  Went hyper 3 years ago and tapered down to 50 mcg.  I decided to try getting off.  Under the care of my physician, I was advised to taper by increments of 12.5 mcg.  I did so, starting last November, retesting every 6 to 8 weeks.  I just had my final test after 8weeks without any medication.  My test again showed values within the normal range.  Quest lab values:  TSH .95 (.3 -3.0), FreeT4 1.5 and FreeT3 2.6.  

This is my question.  I am tired and headachy, but generally feel more "normal" .  I have had some problems during the months' long taper with joint pain and some insomnia.  I am wondering if my body is just trying to return to a more normal state.  Has anyone discontinued thyroid medicine?  If so, I would appreciate hearing your experience.

I will test again in 8 to 12 weeks.

Thank you.
Best Answer
649848 tn?1534633700
COMMUNITY LEADER
What's the reason for being on Synthroid in the first place?  Why do you want off it?  

What are the reference ranges for the Free T3 and Free T4?  Your Free T3 looks to be very low in the range.  FT3 is the hormone that correlates with symptoms, while FT4 and TSH do not.

Your symptoms of joint pain and insomnia are those of hypothyroidism and since your FT3 looks to be very low in the range, it appears that getting completely off Synthroid, might not be in your best interest.

Recommend retesting sooner, rather than later.
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649848 tn?1534633700
COMMUNITY LEADER
SolBel hasn't been active on the forum since the end of this thread, which was in July, so it's unlikely you'll get a response.  Nobody was criticizing her actions...

It's simply a fact of life that there is no cure for Hashimoto's and while diet changes can make us all healthier, there are no scientific studies to prove that they will stop the autoimmune attack on the thyroid.

Diabetes can only be reversed with diet if it's Type II, which is not autoimmune.

Best wishes with your pregnancy.  
Helpful - 0
Avatar universal
I think this is just sad. I feel your pain SolBel. There SHOULD be others out there who have tried to be proactive and get off the thyroid medication at some point. Instead there are critical comments about what you are doing and general disbelief that you're even doing it.

I am taking 75 mcg of Levo, just started 3 weeks ago and am also newly pregnant. I have been feeling really icky all day, like I have a little brick of ick in my belly and any food turns me off. Morning sickness, right? Strange thing is I ran out of my prescription yesterday and  wasn't able to take my usual 6:30 am dose. Woke up at 7:30 and noticed almost immediately that I don't feel sick today. Hmmm. I may just miss my next dose also to see how I feel tomorrow and then continue my medicine to compare. I've been sick all day without fail for the last two weeks, so it's quite a noticeable difference. i looked it up and sure enough nausea is a side effect of the levo also.

I plan to get off of the levo at some point in the future by attacking it through diet and fighting off the autoimmune reactions of Hashimotos. You can treat psoriasis that way, and diabetes. Why not Hashimoto's? I am just not willing to risk it while I'm pregnant because of the risk of birth defects/low IQ/miscarriage. I hope that when I do start to transition off the meds that there will be a community of like minded people out there to bounce ideas off of.
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Avatar universal
Thank you very much for your comments.   I will be very careful and continue testing every 6 to 8 weeks for a while.  My concerns are about "normal" or "expected" symptoms when lowering dose.  I was on 50 mcg when I started tapering last November, so it was a low dose.  Logic suggests that the body has to adjust to the absence of a stimulant and one taken for close to 23 years.  If it turns out I need to take meds again,I will.  One endo said I might jump around when getting off as my body adjusts.  As a person with bad migraine, I know that migraine (which is what I've been having) can cause head pain, nausea, fuzzy headedness and fatigue.  These are all symptoms also associated with the hypo state.  So...I pretty much have to rely on lab tests to tell me where I'm at.  Subjective analysis of symptoms won't work for me.  So I ask you all what your experiences are when lowering/ getting off because I assume most of you do not have severe migraines.  There must be people on this forum who have had to get off meds before having thyroid surgery?

Kind of you to respond.
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Avatar universal
I guess I wanted to say when my joints hurt, I now know immediately that my dose is too low, I raise the dosage just a little and they go away, which is huge!
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Avatar universal
I think it takes the body to adjust when even changing dosages, I am between a 88mcg and 100mcg dosage one being too low and the other too high and I have hair falling out if I take 100 and headaches , yet when I go down I have joint problems , trouble sleeping and tired......and sometimes a headache their too because body just isn't balanced....so your body is probably struggling trying to balance....I think 8 weeks blood test should have showed something but you could have been on too much before which could take more time....JUST BE CAREFUL....so many other health issues can be like a domino effect if you go hypo such as heart problems, high cholesterol, joints hurting, shallow breathing, headeaches, tongue swelling, hoarse voice, etc which is even worse if you are older probably hence I am no spring chicken either...so pay close attention to these symptoms.....
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Avatar universal
I think we got off point.  My initial question was asking for feedback about experiences people had reducing or completely getting off Synthroid or other thyroid replacement drug.  ☺️
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649848 tn?1534633700
COMMUNITY LEADER
Yes, we'd probably have expected it to happen by now, but stranger things have happened by now, but you just never know how it's going to progress (or not).
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Avatar universal
I am 70, so I think it should have happened by now?  My Free T4 is actually going up and my TSH was 1.25 15 weeks ago and is now .95.  I will be watching and will get back on the meds if things go "south".  Thank you.
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649848 tn?1534633700
COMMUNITY LEADER
As Hashimoto's progresses, you should expect FT3 and FT4 to decrease.
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Avatar universal
Thank you for your response.  All I can do is keep retesting.  Since I've been off for only 9 weeks, it may take awhile for a test to be positive.  Since the Free T3 is increasing, I'll keep an eye on that.
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649848 tn?1534633700
COMMUNITY LEADER
Since you have Hashimoto's, your thyroid will eventually stop working; that's simply what Hashimoto's does.  I've never heard of anyone with Hashimoto's being able to discontinue thyroid med for any length of time.
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Avatar universal
Sorry, TPO high.
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Avatar universal
Yes, ultrasound. No nodules.  Yes Hashimoto's.  Coronary artery disease.   For now, I am better off the meds.  We think it makes sense that it will take a while for the body to recalibrate after 22-23 on a med, any med.  anyone have experiences related to discontinuing Synthroid?
Helpful - 0
649848 tn?1534633700
COMMUNITY LEADER
Which antibodies were high?  

Sounds like you probably have Hashimoto's Thyroiditis, which can be characterized by periods of hyperthyroidism, alternating with periods of hypothyroidism.  Hashimoto's, doesn't go away and it, ultimately, destroys the thyroid, so it no longer produces any hormones.

Have you ever had an ultrasound to determine if you might have nodule(s) that could be producing hormones, independently of the thyroid?  Sometimes, that happens and there's nothing we can do to stop it.  This could be your current issue; I'd suggest you discuss this with your doctor.

Please define CAD.  I know it as Coronary Artery Disease, but every once in a while, someone throws in something we aren't used to seeing for a specific abbreviation...  A good diet and weight loss is always a good thing. I may have to "borrow" your diet - that's about how much I have to lose and I'd love new clothes... lol
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Avatar universal
Oh, perhaps important, too, is the new dx of CAD.  Upon diagnosis, I started a heart- healthy diet at the same time as reducing the Synthroid.  I have lost 29.5 lbs. since November 2013.  Definitely need new clothes!
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Avatar universal
I had high antibodies 23 years ago and high TSH with low T4.  I took 75mcg until three years ago when I went hyper.  The dose was reduced.  I never felt normal during the entire 23 years.  When I took the drug in the morning with no food, within an hour or so, I felt jumpy and not well.  When I went hyper three years ago, my blood pressure went through the roof.  My dose was reduced to 37.5 mcg at that time.  The BP settled down then, but increased again this year.  I have felt much better since I started decreasing my dose.  I have more endurance, don't feel the need to take a rest as often, but now I often cannot go to sleep and have daily headaches.  I am no longer jumpy or anxious.  My blood pressure is, thank goodness, normal for the first time in years.  So that is good.  I just wondered if anyone has had a similar experience.  I have just tested and will retest within 6 to 8 weeks.  The free T3 has actually come up a bit from previous tests.  Also I have pretty bad migraines which can cause fatigue.

Thank you for taking the time to address my question.
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Avatar universal
I agree with Barb 100%.  Those were my exact thoughts.

Insomnia can generally be catagorized into two camps.  One is where you simply cannot get to sleep. This is generally more often associated with Hyper or too much thyroid.  The other is where you are tired, fall asleep immediately at nearly every chance, yet can't stay asleep or get a solid night sleep. This seems more common with Hypo or low thyroid.  Dr's don't seem to recognize this distinction and as soon as you say you are not sleeping well they assume that it is from too high of thyroid.  This is especially true if you are on thyroid hormones and the TSH is low.  And will reduce the dosage of thyroid.  But if of the 2nd type this is the exact WRONG move.
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