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Thyroid Disorders Message Board
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Old 08-19-2003, 04:50 AM   #1
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Gypsysoul HB User
Post How long on Synthroid before requesting something new?

I was wondering how long did others stay on Synthroid before wanting to try new med.s??
I had a thyroidectomy in June and the Dr. started me on 125 mcg of Synthroid. Another blood test at the end of July showed my TSH really low (.06) so he lowered the Synthroid to 100 mcg.
I still don't feel that great. At times I feel light-headed and achey. Half the time I feel like I'm in a state of confusion.(brain fog?) I'm still tired.
PLUS my hair is still falling! I was hoping it would slow down by now...it seemed too....but after the shower this morning I'm convinced it's not! All my baby hairs are gone.
I'm thinking of giving the Dr. a call and requesting to try something else, but I'm afraid he's going to say to give this more time and that it's too early to switch med's. I don't want to wait until I'm bald!
Is it too early to change medicines? Do I need to be more patient?
Thanks for any advice.

 
Old 08-19-2003, 07:23 AM   #2
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Usually you should give it a few months, but if after a few months if you are still not feeling well it may be wise to try a different brand. I think if it were me I would switch.

 
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Old 08-19-2003, 04:48 PM   #3
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It's been a true adventure for me to get to my correct dosage and correct medications.... I arrived at it by settling for no less than feeling my best... so, in the beginning I gave armour a try by itself for a month.. then added cytomel and it seemed like a good mix so upon my insistance we continued to increase my meds about every two weeks or so.

You may need some t3 with you synthroid... that could make a world of difference for alot of people.

 
Old 08-19-2003, 05:23 PM   #4
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Hi. Patience,Gypsysoul. Don't roam just yet! dea4 and daldre1269 are right! By having a thyroidectomy it should be fairly easy to get you balanced.

 
Old 08-19-2003, 07:57 PM   #5
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I wish no thyroid meant it was easier to get balanced, but it doesn't. It also seems easier to get out of whack. I think on pretty much any med you know within a month whether or not there is at least some improvement. If not, go back. I was told raise the meds or lower them and come back in three months, over and over and over(you get the idea). I never got better and they never got it right, but as long as they only had to see me every three months I guess it was okay with them. Be a squeaky wheel.

Daldre, when you added the cytomel; how much did you start with? IWL

 
Old 08-20-2003, 02:24 AM   #6
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Hi IWL... I started off in the very beginning with 20mcg... which was actually a mistake made by the nurse who wrote the prescription. It was in my favor though because I started the first day on 5mcg then two days later went to 10mcg and then about 5 days later I went to the 20mcg. I noticed major improvements right away.

The increases were so often because the t3 being quick acting and short half life is very easy to titrate the dose. figured I would smile back at you http://www.healthboards.com/ubb/bang.gif

 
Old 08-20-2003, 06:10 PM   #7
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Hi. It has been indcated to me that if I have my thyroid removed it will be easer to balance med & body. Not ture ?!?!? The way my thyroid is still putting out hormones and throughing me into almost Hyper-T,it is thought that I would be better off w/o it. Would love to hear your thoughts!!!! Thanks

 
Old 08-20-2003, 06:40 PM   #8
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I have my entire thyroid removed, and was fine on synthroid for 4 years. Just recently, my levels got out of whack. I am still trying to get back to normal. But from what I hear on the Board and from my new Endo is it is easier to balance your levels if you do not have any thyroid left.

If you get your levels balanced correctly, and get them checked regularly (which I didn't) you should be fine.

 
Old 08-20-2003, 07:08 PM   #9
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Annette, Just remember they can't put your thyroid back if you don't feel better without it!!! I've had too many years of not feeling good without one. I think it is easier for the doctors, but not necessarily for you. Get alot of information before you do anything. I got lots of test, went to the endo multiple times a year and still wasn't healthy on Levoxyl. Man made thyroid is NOT just as good as your own hormones. Hang in there. IWL

 
Old 08-20-2003, 11:14 PM   #10
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Annette, due to the info I read on this healthboard several years ago, I insisted on Armour Thyroid. Well, that was a bust. So, still following info on this healthboard, I went to synthroid, but with cytomel added, for that magical t3 additive everyone was going on about. That is when my true hell began.

Cytomel put me through horrific sensations and side effects I wouldn't wish on my worst enemy. My endo explained it is because cytomel is unstable and short-lived, which is why it was no longer used as before. I can tell you this is what I called my dark period in my thyroid treatment, and if it continued for much longer I would have killed myself. Even at a tiny fraction of a pill, I got reactions, because cytomel is very potent. Towards the end of using cytomel, my TSH got to 1 and I felt good for 2 out of 4 days, while the other 2 days I endured terrible sensations from the pills. I couldn't live with that lack of stability in my health and put up with those awful feelings.

So I went to synthroid only, and it was difficult weening off the T3. I stuck to synthroid for a year and a half, and hated the way I felt with it. My endo's nurse told me she also hadn't done well on synthroid, and had switched to Levoyxl. Within 3 months she was remarkably better. So I gave Levoxyl a try.

Just from the getgo I felt better because I didn't experience the side effects I got from Synthroid. However, it took over a year for me to get feeling good, and this involved my insisting on higher doses, till I got to .5 and 1 TSH.

Since my long journey of different treatments, I finally feel relatively normal; however, I have relapses from time to time when I find I have to take some medicines for brief periods that may interfere temporarily with my levoyxl. At those times my TSH gets messed up until I get off the offending meds.

Plus, as mentioned by someone else here, as good as Levoyxl makes me feel, these manmade stuff don't seem to do the entire job right, so I still have a thing or two that isn't quite what it used to be before my thyroid problem, but I do feel 'normal,' and there was a time there on the other thyroid treatments, when I had lost that feeling of normal.

The most important thing I learned along the way was not to settle with not feeling well; sometimes this meant switching doctors to get the dose I needed. I kept insisting until finally I am now getting enough. I take 4 days a weeks of 100 mcg and 3 days of 150 mcg and twice a month I add another 50 mcg. I use only the pills with no dyes, as I found I react to the dyes.

Don't let anyone force you to settle; at my worse feelings on cytomel, I had my endo at that time tell me I had to learn to live with the feelings. Baloney!!! Those are feelings nobody could tolerate. So, don't settle yourself if you feel that you aren't getting the right dose or aren't doing well on any kind of thyroid med. Switch doctors if you have to, but don't give up, and hang in there---getting your thyroid back where it was takes time, but it also often takes active work on your part with your doctors to get where you feel well again.

 
Old 08-20-2003, 11:31 PM   #11
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Gypsysoul, you have to change your way of thinking about length of reaction time to medicine and thyroid treatment. You need to start educating yourself on thyroid therapy. From June to now is only 2 months. On the average, it takes 10 months to start to feel normal on any thyroid med, and can take up to 2 years or more to get the medicine tweaked to the right dose for you.

Thyroid medicine, like Synthroid and Levoxyl, take a long time to reach the right level that can be tested for every dose change--that time is 6-8 weeks. That is why, except in the very beginning, many doctors will test you every 8 weeks for every dose increase, because it takes that long for each dose to reach it's maximum effect.

That is why getting to the right dose for you can take months or even years. You have to develop the long view to your thyroid treatment, and have patience. After a reasonable amount of time on Synthroid, which should be 10 months, if you have reached the maximum dose and have been there for 3 months, and you still don't feel well, then THAT is the time to ask to switch to another medicine. Then you have to give that new medicine the same amount of time before you can realistically conclude it isn't doing the trick for you. In all fairness you just started on Synthroid and haven't been on it long enough to feel any positive effects. Right now while your blood levels may reflect a good TSH, it will take your body months to reflect that in health. This is how thyroid therapy is different from other types of disease treatment, the slow amount of time it takes for all of you to improve after reaching the right dose.

Personally, I didn't do well on synthroid and have found my well-being on levoxyl, but my sister is doing just great on synthroid, so it's all a personal thing in the end.

 
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