I just want to SCREAM!!!!

KerryClem · 01-11-2005, 07:38 PM

Well, definitely changing endos. If I wasn't convinced before, I am now....

a little background:
6 weeks ago I was on 150mcg levoxyl and feeling great! I had been on it for a little over a mot and was, for the first time since I can remember, feeling like a normal person. I wasn't falling asleep at lunch, and I could walk from room to room without being exhausted - with 2 small kids, it was great...... I was loosing weight too, for the first time in 7 years of exercise and diet

But he did the bloodwork and decided that since my TSH was .10 that I needed to decrease, not to my last dose of 137 mcg, but to a dose I haven't had in years, 125mcg.

Went in last week, told him I was feeling like crap again, that my hair was falling out, my skin was like the sahara and my face was so oily that I felt like I was 13 again. He told me that he would not put me back on 150mcg of levoxyl, regardless of what the bloodwork said, and that we sometime have to sacrifice feeling 100% to get the numbers where they should be. He also flat out told me that he looks only at TSH for determining whether to increase or decrease dosage because it is much more sensitive and reliable than T3, T4 or free T4.

He did the draw and I got the results today:

TSH - 2.95 (range = .3-3.3)
T3 - 2.53
Free T4 - 1.86 (not sure what the lab range here is - it's all I can do to get the nurses to tell me ANYTHING, but I plan on calling and having them fax me everything tomorrow)

But I do know that my TSH is high and my free T4 is low.... and how, if 125mcg levoxyl is anywhere near being a correct dosage (going by the assumption that since 137mcg is only a slight increase from 125mcg, I must only have had a slight difference, right??) did I go from a TSH of .10 to 2.95 on that disage????

Sorry for the rambles - I'm furious, and all the good docs that are being reccommended to me are not accepting my insurance.....

nobimbo · 01-11-2005, 09:10 PM

Kerry,

Maybe you could join this Yahoo Florida thyroid support group and get info from the files or from messages there about recommended docs? Here is the link:

http://health.groups.yahoo.com/group...hyroid_Groups/

Something else to try is the Armour Thryoid site, which provides a list of docs who prescribe Armour near you (I'm not saying you necessarily need Armour, but docs willing to prescribe it are more open-minded):

http://www.armourthyroid.com/locate.html

You can also search the archives at the "top docs" message board at the about.com site, or post a request for a recommendation. Here is that link:

http://forums.about.com/ab-thyroiddrs/start

This all sucks, doesn't it? Trying to find appropriate treatment for thyroid disorders shouldn't be this difficult, but it is.

Hang in there,
Linda

KerryClem · 01-12-2005, 04:32 PM

Thanks Linda!

I'm checking out the sites - joining the FL support group one right now....

I'm trying to find out if any of the recommended dr's listed take my insurance - so far none of them have, but I'm going to keep searching....

As if to top it all off, when I went to pick up the scripts that were called in for me, they gave me levothyroxine instead of levoxyl. I went back and asked the tech to change it to levoxyl, as that is the only one that my system resonds to, and she apologized profusely. Seems that my endo had told them levothyroxine, and when they called to check because it wasn't the brand I had been getting for years now, he said that I was wrong....
THey changed it no problem, though, especially after I talked to the pharm and recounted my most recent conversations with the dr to her..... sometimes I hate doctors!!!!

Esmeralda0328 · 01-13-2005, 02:20 PM

Have you asked if he will do a T4 and T3 drug combo? My doctor thinks this is best so I take 150 mcg of synthroid and a low dose of cytomel in combination.

Sorry, edited to say what combo. Es

KerryClem · 01-13-2005, 05:46 PM

no - he doesn't believe in treating with anything other than levothyroxine. I am chnging docs, though, to one that was on the site that Linda sent me to, and I'll discuss it with him.

Rosie1028 · 01-13-2005, 07:51 PM

I switch to Armour thyroid about a month ago. I go in to have my numbers rechecked. I feel fantastic though and my hair isn't falling out anymore. I think the T3 makes a big difference!
good luck

nobimbo · 01-13-2005, 08:12 PM

Kerry, good luck with the new doc! The things you've shared about how your old doc treated/mistreated you got me fuming. I want to suggest that you post your experiences with the bad doc on the forum at the following link, where people who have had bad experiences with thyroid docs can share their stories and warn others about these particular docs (you need to post this docs name, but your real name won't be seen, so don't worry!). Another good thing about this forum is that you can check to see if anyone complained about any doc you intend to see.:

http://www.voy.com/171167/

Linda