Advice welcome

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I had my thyroid removed 5 years ago.  Since then I haven't gone  more than a year without having to change my levo dose.  For the past 2.5 years my TSH results have been relatively consistent, with the exception of 3 instances.  Two of those corresponded with serious asthma exacerbations which resulted in prednisone use.  For both of those instances my dose was tweaked slightly (up a half a pill a week) and then was back to being mostly consistent.  since March I have been on 150mcg either 7 pills a week.  Lately I've been feeling particularly bad, so I reupped the dose to 7.5 since I couldn't get my labs done for a few weeks.  Finally got them done and my TSH is 6.9, the highest it's been since I had my thyroid removed!  I'm at a loss for whats causing the big jump.  At least the other 2 I can correspond to something! My doctor wants to significantly increase my dose, I would prefer to make smaller adjustments and retest as I don't particularly want to send myself into hyper mode either.  

So my questions are:

-does anyone have experience with significant increases vs smaller incremental ones?

-any things that may be affecting absorption that I'm not thinking of?  (I take my pill at the same time every day, 2 hours removed from any food, other pills, calcium, etc)

Any thoughts or advice welcome.  My doctor is pretty useless and every time I tell her i think my dose may be off she asks me if I'm sure I'm not depressed.  (seriously)(and yes, i do need a new doctor)   Thanks! 

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6 Replies

  • Posted

    can you detail your symptoms ? your age ?

    I had mine out in 2012 and had a high dose for a few months on purpose , and then always 150mg Synthroid. I'm 158lbs

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    • Posted

      extreme fatigue,  hair loss, increased migraines, brain fog, generally feeling down (i wouldn't necessarily call it depression, but in real thereof).  those are my bellweather signs that my levels are off.  unfortunately, they occur slowly enough over time that i don't really notice them until one morning i wake up and can barely drag myself out of bed.  then i get tested, and bam, TSH is high.  

      my "good" tsh range is like 1.8 - 2.8or so.  i'm currently at 6.9.  in june was at 3.2.  

      am 41 yrs old.  am on 150mcg, 7 pills a week.  (adjusted up to 7.5 pills a week on my own 2 weeks ago as i knew i was off and my doctors office would t order labs until i saw her)  doctor wants me up to 175mcg.  the highest i've ever been on is 150mcg 8 pills a week and at that dose my tsh was .14 and i felt worse than i do now.  

      it's incredibly frustrating to not be able to figure out a dose that works, or why a dose suddenly stops working.  

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    • Posted

      sorry that should say in the realm of depression.  (not the real thereof! brain fog!)  
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  • Posted

    I' sorry for what you are going through , your symptoms are worse than I ever had , I can't help much but If you feel that when you were on a higher dose you felt better you can slowly increase it and definitely get a new Endocrinologist ASAP , I don't know how fast you can do all your tests where you are , I'm in NY and I can do everything in 3 days if I want privately. are you in UK ?

    To get some relief now you should eat light , gluten free , no smoke nor alcohol maybe no coffee either .

    I hope more come forward to advice you.

    get better soon

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    • Posted

      thanks.  

      I'm in the US.  My doctor already put in the order for labs in a few weeks, so I don't have to worry about tests in the meantime.  And I'll definitely be finding a new endo!

      I'm vegan and mostly gluten free, so I already eat pretty light generally.  Don't drink (alcohol or caffeine) or smoke.  smile  

      Sigh.  The joys of not having a thyroid.  

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