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Old 01-11-2008, 11:18 AM   #1
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NEW here.. fibro..now its thyroid!

Hi, I am new here. I have had fibro since 2003. What a shocker when I was DXed with low tyroid tsh was 4.95. put me on synthroid 50 mcg. Does this sound right? not sure about tyroid problems..

My hair feels awful, my skin is dry, my shoulders hurt from fibro, I ache all over,,,
and I am doublely tired!!.... I cant think straight sometimes, I feel so stupid!

thank you for letting me WHINE to you...

I needed to vent..

also, When will the synthroid start working? How can I possible exercise when I feel so darn tired. My mind wants to do all these wonderful things and my body dont wannaaaaaaaaa,,,, ...

But I still gotta laugh when I do stupid things ( fog)

Its nice to meet everyone here, I sure wouldnt with this on anyone!! but I see there are lots of others that feel like me. We look ok, but the inside is killing us...

WHat causes these auto immune disorders anyway?

thanks
tammy

 
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Old 01-12-2008, 12:41 AM   #2
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Re: NEW here.. fibro..now its thyroid!

Hey, nice to meet you as well. I can answer your question about how long the synthroid takes. I am at 175mcg myself. The average time it takes for your body to acclimate to and fully absorb the replaced hormone is about 2 months. However, it can vary from 2 weeks to 6 to 8 months. As with Fibro, everyone is just a little different. Be patient.. that's the only advice I can offer, and of course, welcome aboard. This is the place to vent, and just about all of us can attest to the brain fog, so don't let that stop you from posting.
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Old 01-20-2008, 03:29 PM   #3
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Re: NEW here.. fibro..now its thyroid!

Tammy, welcome. Ishla is right it takes a few weeks to feel the effects of the synthroid. It will also take a few months or years to get your thyroid in good shape. I went up to 112mcg of synthroid over a three year period and am now on cytomel which is a T3 drug. It works much better but it took all the trying and working with the synthroid and all the blood tests to figure it out. I hope you have better luck.

Glojer

 
Old 01-21-2008, 09:22 AM   #4
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Re: NEW here.. fibro..now its thyroid!

hi tammy,
welcome. try vitamin E for your dry skin. i take 4000 iu a day and have noticed my skin and my tiny bit of hair feel softer. yea, glojer my hair is growing out a bit. for now.
it also took me a few months to get the dose right and feel the energy come back. oops, on the thyroid meds. duh. fibro fog. giggle.
always laugh at yourself. others will laugh with you instead of wondering what planet you came from. tee hee.
peace,
bluelakelady

 
Old 01-21-2008, 10:35 AM   #5
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Re: NEW here.. fibro..now its thyroid!

Hi Tammy,

See you got the double whammy, too...fibro and hypothyroid. Not to discourage, but a word to the wise so you can be your own best patient advocate when it comes to your thyroid. Not all thyroid drugs are made equally. Synthroid is the most prescribed because its manufacturer subsidizes the doctors the most in various ways. I'm not saying it won't work for you, but if you do not find yourself feeling better within six months, ask your doctor about trying other medications or running tests for converstion problems. Some people do not convert T4 the inactive thyroid hormone to the active form or T3.

The lack of thyroid hormone will make your skin dry, hair brittle, make you fatigued, etc. It can also increase your fibro pain. Cod liver oil (capsules are fine) along with vit. E, can help with the dry skin and hair. Be sure to use a good moisturizer and lotions and drink plenty of water. Exfoliating once or twice per week will help your body slough off the dead skin and hold in the moisture you're trying to give it better.

Read, learn, ask questions about both the fibro and thyroid conditions. The more you know, the better you can take care of you. Don't be afraid to ask your doctor questions. If (s)he won't answer or work with you, find someone who will. Same with the medications.

It is possible to feel well and be treated for hypothyroidism. I was prior to CFIDS/FMS and a back injury. But it took five years for me to find the right doctor and medications and levels that worked for me. I don't do well with chemicals, so I'm taking Armour thyroid and an additional bio-identical compounded T3. When we hit the right combo, I immediately lost weight and began feeling like a normal person. I felt well for the first time in years.

Now that I have fibro and CFIDS along with some other medical problems, I can focus on them and not my thyroid making me feel funky because I know it was under control before all this other hit. In fact, my thyroid doctor tried changing my medication to see if he could help with my fibro pain, but it only screwed me up, so I'm back where I was thyroid-wise.

I wish you all the best in your road to wellness.

Houston

 
Old 01-21-2008, 07:07 PM   #6
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Re: NEW here.. fibro..now its thyroid!

Houston great information. I have a question if you don't mind. Did I understand correctly that you had your thyroid in good shape before the CFID/FMS was diagnosed? If so was there one specific thing that made you feel confident about your dosage or a combination of things. I am wondering if you went by your numbers, TSH, T3, etc. or the weight loss factor along with feeling better. Did you have different diet cravings when you knew you were at the right point?

I am asking because I am on my journey right now and am now on cytomel (t3). I feel so much better and my TSH is, or was 5mo. ago below the low end of the lab range. My fatigue is so much better, but there are a few things that haven't come in line yet. At least things I think should be a little better. So I am curious, but I do know that other medication I take could be part of the issue. Thanks Houston.

Glojer

 
Old 01-22-2008, 09:36 AM   #7
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Re: NEW here.. fibro..now its thyroid!

Sure Glojer,

Interesting name, by the way. I started my thyroid journey by becoming very overweight in spite of diet and exercise, fatigued, nail ridges, sleep disturbances, food cravings, aggravated allergies, uncontrollable collesterol, and just a whole myriad of small but annoying health issues. My TSH tests were always in the median range though my doctor suspected hypothyroidism. And why not? I was displaying classic symptoms.

When I started having hot flashes in spite of my HRT, my OB-GYN finally sent me to an Endo to find out why I wasn't metabolizing the hormones. She did a TRH test which showed that I was in fact hypothyroid. She put me on Synthroid and several months later when I showed no improvement, she tested me and discovered that I have a conversion problem. I have trouble making T4, the inactive form of thyroid hormone, into T3, the active form. Ultimately, I left her because she over-medicated me making me hyperthyroid and would not consider using anything other than Cytomel and Synthroid.

My next doctor was published and I hoped would be more willing to work with me, but was unwilling to use anything that didn't come out of a chemists shop. I was becoming more and more disenchanted with the pharmaceutical community and their little shops of horror. Now, I understand that there are many drugs that have saved lives and provided relief for hundreds of thousands and millions and millions of people, but I also know that they are drug COMPANIES. Too often I have heard the rumors of them foregoing the cures in favor of "treatments" because that's what makes them money...keeping the patient in life-long need of their medicine or medicines for relief or survival. Nuff said, I'll climb down off my soap box.

After another try with a holistic doctor who was doing quite well at treating and stabilizing my thyroid with a natural desecated thyroid product, but not quite there, yet... Anyway, I went in one day for a routine visit and the spaceship landed. He pronounced my thyroid "CURED" and declined to refill my prescription.

By the time I got an appointment with my current team of doctors eight weeks later and started on Armour thyroid, I had regained some 25 lbs. and my collesterol was back up. I also had osteopenia and several other things going on.

Anyway, they worked with me and slowly got me to a point where I actually felt really great. I was power walking 2.5 miles or more per day, working 80 + hour weeks, had secured a position in the top of my profession with a Fortune 500 company, I was on top of the world and felt stronger than I had since I was a kid. I made this corporate climb while I was getting well with my thyroid team. My TSH is monitored and I test in below the low-normal range. Fortunately, my doctors do not put stock in that score. They say as long as I feel my thyroid is doing well and my bones are not thinning (the osteopenia was reversed under their treatment within two years), that they will go on how I feel rather than the TSH score.

Since my accident and developing Fibro and CFIDS, I have been put on numerous medications for pain, muscle spasms, radiculopathy, memory, etc. Each drug comes with its own set of possible side effects. Interestingly, I was put on these medications to handle the intial pain of a lifting injury with radiculopathy in my lower back. Several weeks later I began having pain in my upper back and neck. It turns out I have a lot of damage and degeneration in my entire spine, especially the cervical spine.

The longer I was treated, the more intense the pain became. I was sent to one PT who pulled on my right leg so hard I literally thought I was going to come off the table. After him, I started having heel pain, too.

I kept going to the doctor. He would change up all of my medications. I would feel worse or have something else go wrong. Eventually my body reacted to the NSAIDs, I thought, because I had blisters and sores inside my mouth. He took me off the NSAIDs. I'd felt awful on steroids, so we didn't go with them or any shots. I developed tremors, tennitus, dizziness and migraines along the way. I couldn't trust myself to walk anymore without holding onto a cane or a walker because I would loose my balance and fall and I was weak. My doctor said I couldn't risk falling with my back. My doctors started saying I might have MS or something. Great huh?

I went through all of the expensive neurological tests for MS and other neurolgical diseases. I was finally dx'd with CFIDS/FMS and began treatment for that on top of the back injury. I was put on additional medication for the tremors and migraines and told it would also help with the radiculopathy, which it does.

Here is a problem. I cannot function at the top of my game mentally anymore due to the side effects and Fibro-fog. I took a neuro-psych exam and tested 35 points lower on the IQ than I normally do thanks to the drugs or the Fibro or both. So now I'm on another medication to help cut the Fibro-fog. It is helping, but it also has a risk of side effects.

For those interested, it is Namenda, an Alzheimer's medication stronger than Aracept. My doctor advised that Namenda is the only one they've had any success with in Fibro patients and, if you can tollerate it, it does seem to help. At least I feel safer driving now than I did before taking it.

Meanwhile, I began researching all of the medications I take currently and, low and behold both, I discovered that some of the side effects of these medications are tremors, tinnitus, migraines, dizziness, muscle and joint pain (I thought they were supposed to treat that?), memory loss, difficulty with memory and thinking, and this is just to name a few. So, it could be that I've been medicated into some of these issues. I'm trying to cut back on my medications for pain and use holistic or natural pain relievers in their stead during the day to see if I get any relief from some of these other problems. I think it may be working a bit.

Anyway, now that I've rambled on, I'll see if I can't more specifically answer your question about how I knew I was well with my thyroid. Most dramatic to me was the weight loss. I went from 240 to 185 within a year and once we hit the right level down to 155 within four months. I'm just under 6 ft. My collesterol came in line and the body aches and sleep problems cleared up. Of course, I metabolized my HRT so no hot flashes, but they put me on bio-identicals for that, too, and I noticed between the two that I looked younger. My skin improved, my eyes looked clear and bright, I had energy to burn. I felt like I was 24 again and, Honey, you shoulda seen me at 24.

The one thing I can advise you with regard to your thyroid and fibro is to be patient. You didn't get either overnight and you're not going to cure them or find your level overnight. In your case with having Fibro, it's going to be a bit harder to figure when your thyroid is just right, but if your feeling your energy so improved right now, that is a good indication. Your body just needs to settle into whatever your ultimate treatment regimen is and you'll need to see what your collesterol and other readings are to know if it's working. Keep your bone density monitored if you go with a low or below normal TSH regimen. I take Magnesium Citrate, Vit D and Calcium in large doses to keep my bones strong and I also eat organic dairy.

Sorry for the novelette, but I do hope this has been helpful.

Bless you on the road to wellness

Houston

 
Old 01-22-2008, 03:32 PM   #8
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Re: NEW here.. fibro..now its thyroid!

Hi Tammy,
I am new here too (and will write an introduction soon). I read your post about your current diagnosis of low thyroid... unfortunately, that is is one of the many conditions that that are often seen with fibromyalgia. I have been diagnosed with that as well as many other "fibro-family-related" (as my Dr. calls it) conditions/illnesses.
Kimmons

 
Old 01-22-2008, 08:47 PM   #9
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Re: NEW here.. fibro..now its thyroid!

Houston thank you so much for all the info, I enjoyed it. My calender tells me that I have been on cytomel for a year in Feb. and I will be getting another blood test then. I take prednisone so my bone density is done on a regular basis, but I guess it was even before the pred. I also keep osteoporosis at bay with vitamins and exercise, so far so good. The one problem I still have is the weight. I don't gain it as fast anymore, but trying to lose even a pound is incredible difficult and if I'm not really vigilant it will be back on me in a blink.

Thanks again, it is late and I will reread your info again in an a.m. when I am more clear. I bet you were something at 24! At 24 I weighed 90lbs. and was a stick with no curves. Now I have curves but they are all in the wrong places.....giggle!

Glojer

 
Old 01-23-2008, 11:39 AM   #10
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Re: NEW here.. fibro..now its thyroid!

Glojer,

Prednisone can keep the weight on you, too. What's the reason for long term treatment with this steroid?

I guess in some ways I'm incredibly thankful I can't take prednisone and stuff like it. When I do, it's as if someone reached into my body and yanked my thyroid completely out. I can't tollerate them at all. Put me on a Medrol dose pack and I'll gain twenty pounds almost overnight and won't be able to shed the weight for 6-10 months, plus I'll have all the other goodies that go with extreme hypothyroidism.

But...the steroids can give you a lot of energy. In any case, I wish you wellness soon

Houston

 
Old 01-24-2008, 08:07 PM   #11
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Re: NEW here.. fibro..now its thyroid!

Hi Houston, I take prednisone in a low dose (4mgs.daily) for joint pain from CTD that my rhuemy calls almost lupus. I have tried several other meds with too many side effects. The rhuemy finally said we had to try pred. and it worked great. I have actually lost some weight since being on it because I have been able to exercise. It is just that losing is a very difficult and slow process. If I lose 2lbs. a month I'm lucky and that is with a strict diet and at least 30min. a day exercise. I won't give up though. It took me three years to lose 30lbs. a few years ago, I just thought when I got my thyroid in better shape it would be a little easier. Thanks so much for your info.

Glojer

 
Old 01-25-2008, 12:40 PM   #12
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Re: NEW here.. fibro..now its thyroid!

I'm so sorry to hear that. I am glad it is working for you, but I hope you understand that it is going to slow down your ability to loose weight even though it's allowing you to exercise. You're in bit of a Catch 22.

Don't get too discouraged. It sounds like you are doing the right things and the weight is coming off, albiet slowly. "They" say the slower it comes off the better it stays off. As long as you're consistent with your diet and exercise program, it sounds like you're on the right track.

Keep learning everything you can about your conditions and as much as possible about their interactions. Be your own best patient advocate. You'll do well.

Stay in touch.

Houston

 
Old 01-29-2008, 11:17 AM   #13
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Wink Re: NEW here.. fibro..now its thyroid!

Quote:
Originally Posted by tammym40 View Post
Hi, I am new here. I have had fibro since 2003. What a shocker when I was DXed with low tyroid tsh was 4.95. put me on synthroid 50 mcg. Does this sound right? not sure about tyroid problems..

My hair feels awful, my skin is dry, my shoulders hurt from fibro, I ache all over,,,
and I am doublely tired!!.... I cant think straight sometimes, I feel so stupid!

thank you for letting me WHINE to you...

I needed to vent..

also, When will the synthroid start working? How can I possible exercise when I feel so darn tired. My mind wants to do all these wonderful things and my body dont wannaaaaaaaaa,,,, ...

But I still gotta laugh when I do stupid things ( fog)

Its nice to meet everyone here, I sure wouldnt with this on anyone!! but I see there are lots of others that feel like me. We look ok, but the inside is killing us...

WHat causes these auto immune disorders anyway?

thanks
tammy
I know exactly what you are talking about when you say you feel stupid cause you are in a fog. I have fibromyalgia and that is exactly how I feel along with ALL the other symptoms. My problem is ,is that I am stubborn and I have a hard time grasping the fact that I have this and I am not in control of it, it is driving me crazy !!!! Anyways to answer your question on what causes this, I read that it usually starts in early childhood from stress, but there might be more reasons.I am still researching. well it is comforting to know that there is people out there besides just me knowing what I am going through! thanks for listening!!

 
Old 01-30-2008, 07:59 AM   #14
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Re: NEW here.. fibro..now its thyroid!

I know exactly how you are feeling. I've had low thyroid for years. It's the thyroid that makes your skin dry and your hair feel aweful. It seems at times like it's just an effort to lift your feet and put one foot in front of the other. Yet when people see you they think you look fine because your not in a cast or something visibly wrong. It's very frustrating. It seemed like it took my Synthroid about a month to work. It also took a while to get the right dose. They had to do a little testing until they found the right one. However, lots of people with Fibromyalgia have Chronic Fatigue as well. I also found out that I have sleep apnea. That's where I stop breathing at night. No matter how much sleep I would get, I was still exhausted. I'd fall asleep at stop lights etc. I finally went in for a sleep study and they found sleep apnea. I now have a C-Pap machine that I wear at night and that's helped a ton!!! The exercise thing is rough. I started out in a warm pool and just did what I could. I gradually worked my way up to joining a gym. I'm certainly not as "gung ho" as most of the people there, but it's helped.

 
Old 01-31-2008, 10:16 AM   #15
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Re: NEW here.. fibro..now its thyroid!

Hi Everyone,

Sorry it took so long to thank you, I lost where I put my name and password! fogged <--

I read all your responses and you all sound just like me, I wouldnt wish this on anyone, but glad Im not crazy!

I sure feel like it sometimes,!!! The worse part is looking ok, and feeling like crap!... I even feel bad about myself when, I have to rest or take a brake, and get so mad at myself, ..those are my worse days.... the good days, I just say heck with it, im taking a day off and going to rest.

I had back surgery in 97, then got fibro in 2003, on disibilty, now the thyroid, which doesnt help with my tiredness.. I dont like not being in control either.

anyway. just rambling here and thoughts.

I ususally just sit and read the boards, but wanted to thank all of you for your stories and responses, I hope you all have the best day, and a better one tomorrow!

TAMMY

 
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