Discussions By Condition: Fibromyalgia

I need a diagnosis

Posted In: Fibromyalgia 6 Replies
  • Posted By: rlshahan
  • March 25, 2007
  • 07:39 PM

I need to know what is wrong with me. It sounds like Fibro, but I need to be sure. I don't want to just treat the symptoms. I want to know what's causing my problems. Can anyone help or has anyone had anything similar. I had hyperthyroid yrs ago. They gave me Radioactive Iodine to destroy the thyriod, so of course I went hypothyroid. That's when all the pain and stiffness started. I've had pain and stiff joints for 4 yrs, but have managed with 1 or 2 bad flare ups. I ended up last yr with Thyroid eyes, the bulging, drooping, tearing, swelling, etc. I had to take Steroids for 6 mths. I felt great when i was on them. I had no Fibro symptoms, but then I started with bad side effects from steroids (like Cushiongs). I'm off them now. all my symptoms of Fibro are back and worse than ever. I'm on Levothyroxine and my levels are normal. Hepatitis is neg. Sed rate is normal. I was in perfect health until 4 yrs ago. I'm 47, but went through menopause at 40 so it's not that. Now, I am very fatigued, short term memory problems, constant joint pain and stiffness, hand numbness, burning muscle pain with little exertion, skin on feet, knees, and elbows look like dried hide, lost all the hair on my legs, headaches, Both arms fall completely asleep at night and wake me up with pain. I can't get enough sleep. I wake up exhausted. Sleep study just showed ineffective sleep (go figure). I wake up and am falling asleep within 3 hrs. I have no ambition to do anything. It hurts to go up steps or keep any position for more than 15 minutes. I have gained 30 pds in 3 yrs. I'm now very depressed and need some help. Appreciate anyone's comments

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  • Please check for yourself your TSH readings and all your thyroid bloodwork (lab) results. Don't let a doctor tell you that your thyroid lab work is "NORMAL" without looking at your own results for yourself. The reason I am mentioning this to you is because you mentioned something about your thyroid tests being normal, but I am wondering if you got copies of your bloodwork and checked them for yourself because doctors are NOT dependable and ONLY GLANCE at results to see if the results are in the SO-CALLED normal range and the "normal" range varies so much that MAYBE your "NORMAL" is not what my normal would be. You sound like you are on too much thyroxine. BUT I am not a doctor, but I AM speaking from experience. I was OVERmedicated on synthroid for about 5 years and the doctors would simply glance at my thyroid tests, which I had done often, but the doctors did not pick up on my tests TSH was constantly and consistently falling each time. They simply told me that everything was okay and normal, and I didn't bother at the time to get copies and look UNTIL my doctor went to another town, and I had to get a new doctor. My new doctor wanted copies of my medical reports and previouis bloodworksm so I went ann got as many as I could. And I looked and made comparisons for myself. I told my new doctor somethign was wrong with my thyroid's functioning because my TSH had fallen in four years from around 2, which was okay FOR ME. BUT the TSH fell to .37 at that time. The doctor KEPT INSISTING that my reading was normal, but I KNEW better. IT SEEMED NORMAL, just by looking at the .37, which was at the hyper end of normal. I was going completely into hyperthyroidism due to OVERmedication on synthroid, and no one helped me because they kept saying I WAS NORMAL. BUT the TSH was falling everytime it was checked and my new doctor checked it again 5 months later, and again it DID fall again into total hyperthyroidism and even then, he did not know what was wrong with me. My husband got on the internet and did some research because I was soooo sick, with systemic problems, including terrible head pain in the bone structure of my head due to inflammation. I got tmj due to inflammation and this led to constant ear ache and pain in the jaw and cheek bones. I also got a "FROZEN" shoulder and two torn tendons in my left shoulder. I had terrible fibromyalgia due to the inflammation. I started shaking and trembling inside because my nervous system had been agitated and stimulated for so long due to the overmedication. I had numbness and tingling in my feet, legs, and arms, with some in my scalp too. All of the above have one thing in common...inflammation. From my experience, I KNOW this inflammation was caused by overmedication of the thyroid gland, and the only reason I am alive today is because my husband was guided by God to tell me one morning when my body was just completely shuting down TO STOP THE SYNTHROID. I did, but only for a few days because I THEN started to have hypthyroidism because my thyroid really did need medication but not what I was on. It has been 7 months now since my body nearly shut down, and my thyroid is STILL NOT regulated. As I went through menopause, the endocrinologist told me that my thyroid changed and that my doctors should have adjusted the synthroid, but didn't. That has nearly destroyed my body and MY MIND. I was suffering so terribly and the doctors failed me miserably. They simply know very little about the thyroid and they lump us all into the same category of what "normal' is, as far as our bloodwork. I need to stay close to 2 to feel half-way decent. BUT my doctors thought ANY READING in the range of .37-4 or even .37-8, in some cases was a normal reading for the TSH. This is very deceptive. Do some research on your own. Study thoroughly the TSH and the thyroid gland functionings. Don't take a doctor's word that everything is okay til you look at your bloodwork yourself. Keep your copies and make comparisons each time. I am still suffering terribly due to the hyperthyroidism that the overmedication did to me. I was on 100 mcg's for about 18 years and the last four of those years, I was miserable, but did not know why til last year. And the new doctor did not want to listen either. FINALLY, we took it into our own hands. WE HAD TO because I was dying. This has been so destructive and some damage can never be repaired all because doctors KEPT telling me my TSH and thyroid was in the so called normal readings. Even my endocrinologist is just guessing right now what dosage of medication I need. She, too, has already guessed wrong. I am now trying 50 mcg's. I have had to try everything from 100 down 88, 75, even 25 and lower. And then I went into extreme hypothyroidism. So now I am on 50, and PRAYING! GOOD LUCK!
    Anonymous 42789 Replies Flag this Response
  • Thanks for the advice. I went to a new Endocrinologist 2 days ago. He said my TSH is .3 and my T4 is 1.5 He said that is not too low. I agree with you. I've always been around 1.0 He told me that my joint pain has nothing to do with the thyroid. He thinks that is another issue. I left there with no answers, no changes in meds, just a "see you in 6 mths." I'm getting frustrated with these Drs. My joints are worse by the day and they don't seem to know anything. Now I have to go to a Rheumatologist.I'll see what he says. Thanks again, I'll let you know what he says
    rlshahan 3 Replies Flag this Response
    Anonymous 42789 Replies Flag this Response
  • What type of sleep study did you have? My new Endo referred me to a extensive sleep study group for testing. I've read that the best sleep studies require you to stay over night more than 1 day and involve many different types of testing.There's also a great website online for sleep apnea calledhttp://www.apneasupport.org/Also if you have Hashimoto's Thyroiditis your test results can go from normal to high to low. Essentially, they go all over the place. You can by hyper and hypo at the same time. Only an experienced Endo will know how to deal with it.
    Anonymous 42789 Replies Flag this Response
  • rlshahan - I'm not sure, since you mention starting with hyperthyroid that then went hypothyroid. All the symptoms that you mention from four years ago, though, including the joint pain, sound like Lyme disease symptoms. I suppose you could go check it out and see whether you think you match what people are discussing. You can also do a search for any topic and read the threads. You can also post there and people will respond. They can also give you referrals to Lyme-literate doctors who know how to test for and treat Lyme.
    Robin1237 7 Replies
    • February 9, 2008
    • 08:15 PM
    • 0
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  • i have had heart problems and open heart surgury tripple by pass and about 9 stints and leg problem from blockages just had rotor rooter done to leg.. a friend told me about yall and just want to end all problems said you may be able to help...if you think you can help i can give you all the info you need thanks ron
    Anonymous 42789 Replies
    • January 16, 2009
    • 04:12 PM
    • 0
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