Newly diagnosed -- Help!

iVillage Member
Registered: 09-08-2004
Newly diagnosed -- Help!
6
Wed, 09-08-2004 - 8:39pm
I've had lupus and fibromyalgia for years, though I've been mostly in remission for the past two years. I recently saw my rheumatologist as I felt like I was having a lupus flareup -- exhausted, achey, hair loss, etc. The blood work showed a TSH level of 12, and my doctor confirmed I was hypothyroid -- (my thyroid had always been normal previously).

He prescribed synthroid at 50 mcg and suggested that I would feel "20 years younger" once the meds kicked in. After ten days and no improvement (I actually felt worse) he ran blood tests again. This time after ten days of synthroid, my TSH level was up to 34.4!!! He increased the synthroid dosage to 100 mcg., which I've been taking for nearly two weeks, but I still have had no improvement. I can barely get out of bed, feel like I'm coming down with the flu, achey and tired, hoarse voice, numb fingers, hair loss, memory loss, weight gain -- all the symptoms common to hypothyroidism. He wants to wait another couple of weeks to retest my blood, but it seems to me that I should be feeling better by now.

So, am I being overly optimistic expecting improvement so quickly??? Do I need to give the meds more time to start working?? Any information you can share would be very much appreciated.

iVillage Member
Registered: 08-14-2004
Fri, 09-10-2004 - 6:13am
Well...I'm no expert but I've been told and have read that the meds for this condition take as long as 4 to even 6 weeks!! I too have only been on my meds for about 3 weeks and feel little change...some days no change at all. Hang in there and stay in close touch with your doc.

:)

iVillage Member
Registered: 06-22-2004
Sat, 09-11-2004 - 10:41am
Hi:

With TSH that high, I hope your Dr. is running more thyroid tests. Did he mention a thyroid panel? Testing for thyroid antibodies? Is he an endocrinologist? If he isn't, you are within your right to ask for a referal... even if he is an endo and this is just not his specialty; and I strongly recommend that you do! I was having trouble (partly due to being not the most assertive person in the world) getting a referral, so I asked my OBGYN and she gave me the referral right away.

In the meantime, there's a lot of peole here who understand what you're going through; hang in there...

Dee.

iVillage Member
Registered: 11-09-2001
Sun, 09-12-2004 - 10:11pm
Hi and welcome - It can take anywhere from 2 weeks and up to 3 months to feel the full effects of your thyroid medication. And that is assuming that you taking the correct dose and are taking it correctly!! :) Take your medication on an empty stomach first thing in the morning, and then don't take any other medication for an hour afterward. For iron and calicum supplements, wait 4 hours. Don't eat breakfast for about an hour after taking your medication, either. If you have other medication you have to take first thing in the AM for your other conditions, then you can either take your thyroid meds at bedtime on an empty stomach, or wake up a little earlier to take the thyroid meds and go back to sleep!! Some people do that so they can eat when they get up in the AM.

I can't understand why your doctor would do a blood test again in 10 days. Most don't test again for at least 4 weeks. It's kind of rare to feel great after the first two weeks. You might feel better or feel some symptoms relieved, but overall, it does take a while. And the fact that your TSH was still climbing ...... it's good that your doctor raised your medication but the old dose might have worked, too. I guess he didn't want to take the chance. Is he an endo?

I just checked a great book out of the library and you might want to get a copy. It's called Living Well With Autoimmune Disease and it's by Mary Shomon, who has also written, Living Well With Hypothyroidism. It includes sections on lupus, and I believe, Fibromyalgia - as both are autoimmune conditions; as is hypothyroidism. It would be a good idea to read it since it has so much info in it. If I find anything that relates to you tomorrow, I'll post it, ok? Cathy :)

iVillage Member
Registered: 09-08-2004
Thu, 09-16-2004 - 7:26pm
Hi and thank you so much for your in depth information. It's taken me this past week to figure out how to access the replies to my posting. Silly I know, but I only bought the computer a few weeks ago and everything is sort of new.....

The doctor who discovered the thyroid problem is my rheumatologist, who I see regularly for my lupus. We figured I was having a lupus flare-up as those symptoms are pretty similar to those of hypothyroidism. He just happened to order a thyroid test (TSH) and we were surprised to learn of the thyroid problem. A few weeks later, I happened to see my regular general practitioner because I developed tendonitis in my elbow and mentioned to her about the thyroid problem and that I still wasn't feeling any better. She ordered the second TSH test which showed the TSH climbing even higher and ordered the increased dose of synthroid. She hasn't suggested that I see a specialist and seemed kind of "ahhhh, whatever" about retesting to see if the med's are working.

It's been about 3 weeks now on the 100 mg. dosage and I'm not really sure if I'm feeling some improvement or not. I know I'm tired of laying around feeling awful and force myself up and dressed and doing housework and remodeling work. Well, everyone says it may take much longer for the med's to kick in, so guess I'll try and be patient. In the meantime, I'll follow your suggestions for taking the meds properly (which my doctor and pharmacist failed to mention!!)and will hope things improve soon.

Thanks so much for all your help and info. I think I trust what I learn from you all much more than I do my own M.D.!!!

Gratefully, Shayne

iVillage Member
Registered: 11-09-2001
Fri, 09-17-2004 - 8:38am
Hi Shayne - Are you scheduled for another test about 4 to 6 weeks from now? If not, you might want to call your rheumetologist to see if he can write a prescription for one for you. You might also want to find a good endocrinologist in your area, to help you manage your thyroid and keep your TSH level in the normal range, between 1.0 and 2.0. Your thyroid will impact your lupus and keeping it at normal will give you the best chance of feeling well.

Hang in there!! You should start feeling better soon. I used to force myself to get up and moving, too. It's hard, I agree. But I figure Einstein was right - a body in motion stays in motion. (That was Einsein, right?) LOL!! Once you stop, though, it's all over! Cathy :)

iVillage Member
Registered: 12-03-2004
Fri, 12-03-2004 - 9:21am

Hi Shayne

I too have hypothyroidism. I also felt like my meds were not healpng. It has taked me 11 months to get on the right dosage of synthroid. I am now on .56 mcg. I just had new blood tests done and my reading are back to normal ranges. I was told by my doctor that it could take up to a year to fine the right dosage. You have to give it time. Each time I was put on a different dosage I had to be retested after about 6-8 weeks of taking it. There are days that I just sit and do nothing. I am feeling much better now, except for the weight gain. I cannot seem to loose any of the 20 pounds that I gained. Of course my problem is that I like to eat and I am not active. I am a couch potato!!! Hang in there it will get better. If you would like to talk about it please e-mail me.

Terry