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Hypothyroidism - how long did it take to get optimum dosage?

Discussion in 'Parents Off Topic' started by emm142, Feb 15, 2012.

  1. emm142

    emm142 Approved members

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    I was diagnosed with hypothyroidism in May 2010 with a TSH of 5.96 (my T4 was also low, but I do not remember the level exactly). I started on 25mcg Levothyroxine. I think that when I was retested in 2 months my TSH was around 3, so my dosage was not raised at all. I stayed on 25mcg for quite a while.

    In August 2011 my TSH was 7.89 and my free T4 was also low. My dosage was raised to 50mcg and in October my TSH was down to 2.5.

    However, when I was retested in December my TSH was back up to 5.9 and my free T4 was again barely in range, so my dosage was raised to 100mcg.

    It's now February and my TSH is now 6.9 and my free T4 is lower than ever. I haven't heard from the doctor yet, but I assume that my dosage will just be raised again.

    Meanwhile, I am being treated for depression (we don't think it is entirely due to the hypothyroidism - although of course this isn't certain, since I've been hypoT for so long). And my diabetes is crazier than ever, which my endo is partially blaming on hypothyroidism.

    So, is it normal that my TSH has not been in particularly good range for the almost 2 years that I've been treated for? And does anyone have a ballpark estimate of a normal Levothyroxine dosage for a 19 year old, 5ft 5 and 120lbs? And finally, is there any particular reason why a dosage increase of 50mcg would have no effect whatsoever? The best thing I can think of is that since the autoimmune attack on my thyroid is ongoing, my TSH would be even higher if I had not raised the dosage. I don't know. It's so frustrating, though. I feel like it should have worked by now.
     
    Last edited: Feb 15, 2012
  2. selketine

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    I had my thyroid removed though apparently I was told the dr. left some of it in there and it seemed to work for me for several years. I was 13 when I had the surgery (in 8th grade) and I wasn't exactly paying close attention to the doctor!

    I started on synthroid when I was around 21 and I think it was around 150. I'm up to 250 now but I also weigh more - and I'm in my late 40's. My dose has fluctuated through 2 pregnancies, etc.

    Just recently when I told the dr. I thought my thyroid level must be low even though it was tested just a few months prior - she was sure I was wrong - but sure enough it was low - and I had to up the dose. She upped it a bit - and then had to up it more! Maybe menopause has something to do with it? I have no idea. I just know if I can hold my head up at 3pm and feel like a zombie the rest of the day then probably my thyroid is low!

    I wouldn't worry over it - other than to keep going back if you still feel tired and off. Some people have gone to other forms of thyroid replacement and swear by them - I don't know so much about that. Some people seem to have the symptoms of low thyroid even when the blood test is normal. The synthroid has worked for me.
     
  3. jilmarie

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    I don't think it's particularly abnormal to require frequent changes in dose - especially early in therapy when there is presumably still some autoimmune destruction occurring. It sounds like you actually did have fairly good control for the first 1.5 years after your diagnosis, but have required several increases in dose more recently. I don't find that too unusual - almost like a thyroid honeymoon period.

    Doses vary widely, but the average dose for adults with Hashimoto's is 1.6 mcg/kg/day (the dose is higher for people with a total thyroidectomy). Certain medications and medical conditions can interfere with proper absorption. If you're not taking the medication regularly or not taking it on an empty stomach you will also see less absorption.

    Thyroid hormone replacement is like insulin - you need what you need.
     
  4. MomofSweetOne

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    Have they tested your free T3 as well? I felt so much better after I switched to Armour rather than Synthroid because my body didn't convert the T4 to T3 well at all.

    When I was pregnant, my OB wanted my TSH at 1. I feel dreadful at even at 3 TSH. I think mine was 5 something when I was diagnosed, and it's never been that high again.
     
  5. jules12

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    20 years ago, I had graves disease and had my thyroid removed and have been taking Synthoid ever since. I think it took over a year to get the dose right and for several years after that I had my levels checked at least twice a year. During pregancies, I had it checked more often. But it usually holds pretty steady now.

    FYI - I don't know about your pharmacies but I have to be sure they do not try to switch me from Synthroid to a generic or Levothyroxine because it will make my levels off.

    Be persistent if you aren't feeling well and have it checked more often. Thryoid hypo symptoms are no fun!!!! Sorry you don't feel better!
     
  6. mom2ejca

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    It took about a year and a half for me. Partly because I started out with my family dr and once he got my TSH down to 3 he refused to increase my dose, even though I still felt awful.

    So I went to an endo, who did labs/dose increases every 6 weeks until I dropped down into the low 1 range. I stayed at that dose and redid labs in another 6 weeks. By that time my TSH had dropped to .25, which according to endo is slightly hyper, but I felt fantastic and since TSH can fluctuate from day to day, he made no dose change. He went over the hyper symptoms and told me to call if I experienced any and retested in 12 weeks. I think TSH was somewhere around .6 that time. I go to annual testing now.

    My endo's goal is under 1.5, but prefers under 1, because that's where the majority of his patients feel the best.
     
  7. Marcia

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    Emm, Abbey doesn't do well on levothyroxine (generic) and has to take Levoxyl (name brand). The endo said to never have Ab use the generic form. It took a little over a year to get her level where it needed to be. For me, I take levothyroxine without any problem.
     
  8. emm142

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    Just wondering, in what way does she not do well on it? Do her levels just not come into range, or do they fluctuate a lot or what? Just wondering what I need to look out for if this is the case for me. I imagine it would be a battle to get a name brand covered on the NHS.
     
  9. sarahspins

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    I've never been "stable"... I fluctuate between 150mcg and 175, and I've dropped down to 137 and 125 a few times in just the past two years. Personally I have a theory that where I am in my monthy cycle effects my labwork, but my endo doesn't believe that to be true... it would certainly explain some of the erratic lab results I've had... my tsh has come in all over the map on the same dosage.

    I take name brand synthroid, not a generic, even though it costs more - my endo said that there is just too much variability with the generic and it would be all but impossible to get me on a semi-stable dose with the issues we are already having. She leaves me up to me and how I'm feeling as far as if we adjust my dosages... unless my TSH comes in at <0.1 then she makes me drop to the next one lower. But she's perfectly fine if I am borderline hyper and I feel better that way than when my TSH creeps up.
     
  10. bnmom

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    I was dx'd with Graves years ago, they nuked my thyroid twice and I've been hypo since. I've been on 150mcg for several years now, but I remember it seemed to take forever for them to get my dosage set. Hang in there! You'll get there and you'll feel better soon :cwds:

    As far as the meds go...

    My endo had me on Levoxyl when I didn't have health insurance, each visit she would ask if I had insurance yet...when I finally said yes, she immediately switched my script to Synthroid. She gave no explanation, and I didn't think much of it.

    Flash forward to this past year, I decided endo was too expensive so I switched to having my regular doc handle it . Insurance now would only cover levothyroxine - ok, fine, whatever. During latest check up with doc, my tsh is high again. So she's ready to tweak my dose. As we're wrapping up the visit, I pick up my jacket and begin to pull hairs off the backside of it before putting it on...I have been losing hair off and on for years - I shed like a dog! But I had never mentioned it to her because I was just used to it.

    Doc notices all the hair, then asked if my fingernails were brittle - yes. She then told me she'd be calling insurance to get them to authorize Synthroid, because my hair loss and brittle nails were a side effect of the generic levothyroxine. And she's holding off tweaking my dose now because she thinks getting back on Synthroid will probably fix that too.

    So endo preferred Synthroid, doc prefers Synthroid...seems Synthroid is the goal.

    And like others have said, I too feel best when running close to hyper. Hypo sucks!!! Makes me tired, scattered, irritable, depressed, just all around ick.
     
  11. emm142

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    I lose a lot of hair, but had just been putting that down to being hypo. Same with the brittle nails.. Okay, I'll bring this up with the doc at my next appointment. Thanks! :cwds:
     
  12. Marcia

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    Ab's TSH was always high when using generic. The endo didn't realize she was getting the generic until about 8 months after starting-when he ordered levoxyl only, her dose stabilized (88 mcg) and has been that for over a year. Are you able to get rand name if that is what is specifically ordered by your physician?
     

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