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Missing doses of Synthroid - Total Thyroidectomy

I have been on Synthroid for 19 months now.  I take 175mcg following a TT for cancer.  On and off during this time I have missed doses of my meds with no noticable affects.  However, over the summer that has changed.  I've gone about three times with missing more than one dose in a row - the most was 3 days (out of town).  While I don't seem to have mood or sleep problems/changes, I do have terrible joint pain in my knees along with muscle pain in my legs (as though I walked several miles) and I've started having what feels like tendon or ligament pain in my right hip.  This past Jan I was diagnosed with moderate to severe arthritis in my right knee.

I'm wondering if this is from missing the meds - it is at least coincidental - and, if so, how can it happen so fast?  The symptoms disappear within days of taking regular meds.

Thanks for any help you can give.

Cathy
15 Responses
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Avatar universal
Sorry but TSH does not cause symptoms.  If your doctor adjusted your med dose based on TSH level it would bounce all over.    A doctor should be adjusting your meds as needed to relieve symptoms.    Free T4 and Free T3 help guide med dosage changes.  

What are your Free T4 and Free T3 levels and reference ranges shown on the lab report?

Note the conclusion of a recent, excellent scientific study:   "Hypothyroid
symptom relief was associated with both a T4 dose giving TSH-suppression below the lower reference limit and FT3 elevated further into the upper half of its reference range."  Frequently this requires both a T4 and T3 med, not just T4.

In addition, the correct definition for hypothyroidism is "insufficient T3 effect in tissue throughout the body due to inadequate supply of, or response to , thyroid hormone".  So it is not just having adequate thyroid hormone, but also the response to the thyroid hormone.   There are a number of variables that affect response, including Reverse T3, cortisol, Vitamin D, B12 and ferritin.   So you should get those tested as well.  If Reverse T3 is high in the range, then Free T3 has to be high in range.  If cortisol is too low or too high that affects thyroid.  D should be at least 50 ng/mL, B12 in the upper end of its range, and ferritin should be at least 100.  
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Avatar universal
I have been on some form of thyroid meds for almost 30 years. I have had my thyroid removed twice. I have been on .400 mcg of synthroid and my blood work has roller coasted for the last year. The only think I can tell you is be villi gent on getting blood work anytime your body feels off and talk to your Endocrinologist as needed.  Make sure you watch the TSH levels closely. They tend to manage based on T3 and T4 levels. My problem was found with the TSH test more than once.
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Avatar universal
Yes, taking that much extra will make you hyper.  If that was recently, you should contact your doctor immediately or go to the ER.

How long ago was that?  Over what period of time did you take the extra doses?
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Avatar universal
I  took 13 extra doses of levo, it made me feel like i was going out of my mind
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Avatar universal
Most likely, yes, all those symptoms are from missing your meds for so long.  

It takes levo 4-6 weeks to reach its potential in your blood.  It took your levels a while to fall before symptoms appeared when you weren't taking your meds.  It's now going to take about as long as you were off them for you to get back to where you were.  I wouldn't expect to see any big changes for a week or two, and it will probably be 3-4 before you're fully back to feeling the way you were before the meds hiatus.  
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Avatar universal
I have been on thyroid medication for about 17 years.  Right now I am taking 0.15mg of Levothyroxine Sodium (1 a day).  I don't know how I managed to miss any doses because I'm usually very good with taking my meds, However I manage to miss taking my Levothyroxine for 3-4 weeks.  I had a lot of strange symptoms: muscle aches and pains, particularly in my calves,  lower back, shoulders and neck.  I"ve had severe headaches, and puffed up around my eyes, face and neck (throat).

I am back on the medication now (it's been 2 days), and have not seen a change.  I wondering if all of these symptoms are due to missing my thyroid meds for so long.
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Avatar universal
I have been on thyroid medication for about 17 years.  Right now I am taking 0.15mg of Levothyroxine Sodium (1 a day).  I don't know how I managed to miss any doses because I'm usually very good with taking my meds, However I manage to miss taking my Levothyroxine for 3-4 weeks.  I had a lot of strange symptoms: muscle aches and pains, particularly in my calves,  lower back, shoulders and neck.  I"ve had severe headaches, and puffed up around my eyes, face and neck (throat).

I am back on the medication now (it's been 2 days), and have not seen a change.  I wondering if all of these symptoms are due to missing my thyroid meds for so long.
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Avatar universal
It sounds like your dose may not be sufficient.  Have you had recent lab work?  If so, please post the results along with the reference ranges, which vary lab to lab and have to come from your own lab report.  If you post those, we can comment more specifically.
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1598709 tn?1297442060
I feel like ive been on a 5 day bender and just recovering, extreme exhaustion, irritability - I literally want to crawl under my desk and sleep.  Im starting to think my dose is too low because missing one dose shouldnt wreak such havoc on my body.  Had a thyroid abalation in june of 2010 - presently taking 125 mcg, but i dont think its enought.
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168348 tn?1379357075
Also, perhaps, see if they will test your Vitamin D levels. When mine got back up to normal I felt so much better.  I had every hypo symptom you can think of and was from severe Vit D deficiency.

C~
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Avatar universal
Thanks for all the advice.  I guess everyone is different.  I appreciate both of you taking the time to respond.  I'll be sure and get my blood work done again and I am going to have to start keeping a diary of things since something strange is definately going on.

Thanks again,
Cathy
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Avatar universal
I recently had Hyper symptoms and went for labs which showed my FT3 and FT4 to be higher than normal (stress related).
I stopped my thyroxin for 4 days and felt like a million dollars.
But by the 4th day, the coldness feeling and the aches started to creep back in so went back on them at a lower dose (12.5mcg less) .
By the 2nd day of being back on them, I was doing good.
Depending on each individual person...I think if you are drug sensitive, then it is only a matter of days that you feel different if you stop/start them.
Ive been back on mine now for 3 weeks at a lower dose and feel good...no hot sweats, no heart racing and no anxiety (which is the major killer for me lol)
I can handle other symptoms but not the anxiety lol.
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Avatar universal
You should probably have FT3, FT4 and TSH as soon as convenient.  It will help you sort out what's going on.

I have been overmedicated and had the same experience as you.  My endo advised me to stop all meds for three days, then resume my former dose.  The hyper symptoms were not quite gone in three days, but they did subside completely after ten days or two weeks, even though I had resumed the lower dose after three.  I know my FT3 and FT4 were not down to pre-increase levels after the three days off.  I am very sensitive to levo changes.

I think the longer you are overmedicated (and thus the higher your levo raises your FT3 and FT4), the longer it takes to compensate and get the levels back down.  I had stuck out my overmedicated state for a few weeks hoping the symptoms would subside after I got used to the new dose, but they didn't (and I had only increased from 75 to 81.5 mcg!).

T4 is the storage form of the thyroid hormones, and it stays in your blood for a relatively long time (compared to T3).  I recently read an article whose author stated that we could all probably take our levo just once a week (7 X the daily dose) because of its stability.  I'm not advocating this in any way, and it would scare me to death, but I found it an interesting concept.  I know that most of us realize that the weekly dose is the important factor.  Many people alternate dosages every other day (as directed by doctor) or throw in an extra dose once a week to get their levels right.

So, I maintain that if you miss one dose, or even three, but are consistently taking your meds around those misses, you affect your levels very little, and the affect will disappear after a few days.  

  
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Avatar universal
Thanks for the advice.  I don't have current levels as I haven't been tested in a few months.  I really don't think I'm on too low of a dose as I take 175mcg daily.  My TSH at last check was .02.  Since I've had cancer this is a level I need to stay at but any lower (I've been lower) and I have heart palpatations, ticks, etc, showing that it would be dangerous to my health to stay at a lower level.  

You referred to it taking several weeks to get your levels up once you miss doses but I don't think thats completely accurate.  When I was on 200 mcg and too high, I simply had to stop taking them for 3 days and then start the lower dose.  The side effects of the high dose subsided within the 3 days.  The half life of Synthroid/Levothyroxine is such that while it takes time to build, it quickly dissipates in your blood - hence the need for daily dosing.

Cathy
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Avatar universal
Synthroid is a T4 med.  It has to build up in your body over several weeks (and likewise takes several weeks to decline significantly).  Missing a dose, or even three, will affect your free T3 and free T4 levels slightly and temporarily, but it does not impact your FT4 level that quickly.  Do you have your latest FT3 and FT4 results (and their reference ranges) along with TSH?  My guess is that you need a meds increase and that your pain is from being generally undertreated and not from missing a couple of doses here and there.  
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