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New Post 6/30/2009 10:17 AM
  Graves35
1 posts
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Grave's constellation of symptoms - solution? 

Hi, 

I was diagnosed with Graves Dx 11 years ago.  Have been on MTI for over half of that time, had a year of remission and rebound.  Before starting to try to get pregnant, was maintained on low-med fluctuating doses (5-15 mg I think?) and had an enlarged goiter (noticeable to some people, not all), then switched to 50 mg PTU and upon getting pregnant, got a little worse, increased dose (100 mg/day?), but on the hyper side, then normal halfway through until end of pregnancy without meds at all.  A few months post-partum, got pretty hyper before taking more meds (it happened fast and I was avoiding it since breastfeeding), ended up on high doses (400-600 mg) PTU and my endo wanted me to stop breastfeeding and get surgery ASAP - but I convinced her to let me medicate instead and take most of PTU dose at night after last breastfeeding of the day.  Goiter has gotten worse, pretty noticeable now, but if you didn't know me, maybe you'd just think I had sort of a weird neck.  Now (babies approaching 1 year, still breastfeeding) I'm on 350 mg PTU/day now, gaining some weight (not lots but my weight is pretty tied to my thyroid status) and at a couple short times feeling mildly hyper, but overall mostly normal (though it's been so long since I was totally normal all those years ago, not sure what that is any more).  I take 100 mg AM after first feeding, 150 mg after last feeding (6 PM), and 100 mg before bed (11 PM), to minimize PTU in my milk.  I'm still avoiding surgery (and no way want RAI), though my endo is of the opinion since the meds don't seem to ever put me in full remission that I need to get rid of the thyroid (and tells me my fears of hypo problems afterwards are totally unfounded).  I think I'd rather risk my health being a little hyper at times and stay on meds (I have mild osteopenia), than any risk of feeling how I did when hypo (early on when titrating the dose of ATD, ended up hypo and I felt like life was hardly worth living at times which is NOT like me).  Lately (few years) I seem to have (mild?) T3 toxicosis, where T3 is high and T4 is low-low normal when I'm feeling mostly normal.  Last tests:

TSH 0.03, FT3 4.1 (ref is up to 3.9), FT4 0.57 (ref is 0.6-1.8).  My doctor is one to think the FT3 is more important, based on past tests, my guess is she'd say to maintain the dose I'm on.  I'm tempted to think I should back off on the dose to bring up FT4.  But that will likely result in high FT3.  I don't want to push my luck too much with my bones (I take lots of calcium, D, try to be active).  Being more hyper is sort of nicer, but not sure which is more important for my health - if I'm going to pick borderline one or the other, should I aim for hyper or hypo?  I think either way, I'm going to be a little of each unless I push it one way or the other.  I have symptoms (mildly) of both - my heart rate can go up or I'm up at night or energetic due to the hyper side, but my weight increases, my hair and nails are poorer, I feel less inspired to be active due to being more hypo.  I guess I can't complain since it's mild on either end...  I just don't know what makes sense to do.  Also, since my goiter is significant, how does that play into it?  It's bad enough that I'm becoming self-conscious about it, but not so much that I want the surgery.  My eyes are a little affected, I sort of have a "stare", but it's mild enough that it's not too bad and probably not too noticeable (and it seems to be pretty stable over time). 

Sorry for the long description, I just want to give a good overall picture and get your opinion.  I love my endo but sometimes I feel she may follow the older standards too much.

 

 
New Post 7/1/2009 3:47 PM
  Elaine
879 posts
3rd Level Poster


Re: Grave's constellation of symptoms - solution? 

Hi,

I think your intuition is right here. We have around 8 times as much FT4 as FT3. They're measured in different units, sort of like pounds for FT4 and ounces for FT3. So meds should always be based on the FT4 dose. You're going to be affected more by a low FT4 than a slightly elevated FT3.  Also, FT3 is affected by circulating estrogens and you'll still have high levels while you're breastfeeding. It's unlikely that your FT3 is really high. An FT3 by dialysis would remove the interfering proteins and give you a more accurate result, but it's really academic since your FT4 is the more important test.

You should be on a PTU dose that keeps FT4 at least at mid-range regardless of the other levels. Since you're nursing you also want to be on the lowest dose of PTU needed to do the job.

Periods of remission alternating with periods of symptoms aren't uncommon during the childbearing years. And some women continue to have flares while nursing, which has to do with the high estrogens. I had osteopenia when my FT4 was low and it improved when my levels rose.

I agree that hypothryoidism can be far worse than hyperthryoidism and it's also associated with more serious effects.

Again, I wouldn't worry about FT3. Even though T3 is more potent than T4, we have so much less of it. And your level is likely falsely elevated. Some of the symptoms that may seem like hyperthyroidism can actually be those of hypothyroidism. Hypothyroidism is known to cause shortness of breath, insomnia, depression, joint pain, fluid retention, mental fog and all sorts of unrelated symptoms. Best to you, Elaine

 
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