Went to the great Rheumy today...BAD Thyroid tests & Sed rate...Have questions.

Discussion in 'Fibromyalgia Main Forum' started by Lanie, Aug 29, 2002.

  1. Lanie

    Lanie New Member

    well, he is VERY concerned about my test results. My sed rate came back 90 and he said it should be around 5. Also, 4 of my Thyroid tests came back quite horrible and he was alarmed at that as well! He is sending me to a Endocrinologist in the next town but it may take a while to get in there. He is also running more blood tests...

    Can anyone of you relate to this news and tell me what I can expect, possibilities, anything??
    Thanks so much, any info would be greatly appreciated.
    Lanie
    [This Message was Edited on 08/30/2002]
  2. Lanie

    Lanie New Member

    well, he is VERY concerned about my test results. My sed rate came back 90 and he said it should be around 5. Also, 4 of my Thyroid tests came back quite horrible and he was alarmed at that as well! He is sending me to a Endocrinologist in the next town but it may take a while to get in there. He is also running more blood tests...

    Can anyone of you relate to this news and tell me what I can expect, possibilities, anything??
    Thanks so much, any info would be greatly appreciated.
    Lanie
    [This Message was Edited on 08/30/2002]
  3. jeanann

    jeanann New Member

    I have a thyroid problem and that can be very serious. If you have thyroid between 0-4 your probably ok anything above that its a problem. Last year my thyroid was at 26. Don't know what an sed is. I do know that fms is not dxd by blood work. Hope you are ok. love jean ann
  4. TeresaBnGA

    TeresaBnGA New Member

    Jeanann is right 0-4 on the thyroid is the norm and anything above in abnormal. Do you know what yours was? Your TSH? I have had hypothyroidism for 3 years now and have gained over 150 pounds (not to scare you). Not everyone reacts that way. I always ask what my levels are because in actuality in a normal person with a normal metabolism it should be a 1 or 2. That's what you and your doctor should shoot for. I am up to 150mcgs of levoxyl a day now. Don't let them try to give you Synthroid, there has been some controversy involving this drug. I have taken it and they will tell you it is all the same but my thyroid seems to respond better to levoxyl. One thing that is good is it is very, very cheap!!! haha! Like 7.00! Levoxyl is generic. I will be glad to help anyway that I can, just let me know. I am an old pro at the thyroid thing, just knew to this fibro stuff.

    Soft hugs!
    Teresa :)
  5. Lanie

    Lanie New Member

    I don't remember what my numbers were but I do know that they were exorbitant compared to what is normal. In fact all the thyroid tests except the reg screening one that all the drs do what seriously out of wack with what he was explaining to me! There is definitely something wrong with me!!! Teresa, I have also gained over 150lbs. so too late to scare me, unfortunately!! I started out as a size 7/8, and now this is how I am! I hate it SO much, I actually just put myself on the waiting list for gastric bypass surgery!!!

    So, after you find out about this thyroid issue, and you take the meds, do you loose weight??? Does thyroid problems feel like Fibromyalgia?? Because, after all that I have read about FM, I have like every symptom. Lately, though, I have been feeling worse, really swollen and sore, pretty much from head to toe. What symptoms do you have with thyroid disease? I am sorry to be so pestulant, but I am concerned and just want to be my old self again.

    Thanks again, I cannot wait to go to the Endocrinologist! I hope he is on my insurance. My Rheumy says the one in my town is a PUTZ! Yeah, I was ROFL about that one! He is sending me a couple towns over to one he really likes, but the waiting list to get in may be long...
    We shall see.
    Lanie
  6. MicheleF

    MicheleF New Member

    many of the symptoms of hypothyroidism (fibrofog, it's not hyperthyroidism, is it?) mimic those of fms. However, you don't have the 18 tender points w/ thyroid problems, as far as any research I saw. There are people who have both thyroid problems & fms.

    The good thing is that by treating your thyroid, there's a good chance that many of your fms symptoms will be lessened. Sounds like you've got a great doc, and as we've seen these past sev. days here, that's a good bit of the battle right there.

    Try, as much as you can, to not worry ahead of time about all this (thyroid prob. can also produce higher anxiety levels, so I know it's tough.) Just know that you'll deal w/ whatever you need to when the time comes. You don't need to feel worse because of stress.

    Hope you can get into endocr. soon. Take care. Michele
  7. Lanie

    Lanie New Member

    I have a good many of the tender points, the worst being on my upper body and my lower back which those are excrutiating! I think there is a hypo and a hyperthyroidism. Not sure of the difference though...

    Thank you for your advice. It is hard not to stress about things and I have noticed that for me, it has gotten worse the past couple of years. I am very fortunate to have found a wonderful doctor. He is compasionate and kind. Also, extremely thorough, which is something my pcp hasn't been apparently, and I have a pretty great pcp otherwise. My pcp has been checking my thyroid since I started gaining all this weight and apparently was only doing the initial screen, which wasn't horrible. It was the only one of the thyroid tests that wasn't horrible!!

    Thanks again, Michele!
    Lanie[This Message was Edited on 08/30/2002]
  8. tandy

    tandy New Member

    I can only help you with trying to explain my knowledge of the high Sed. rate~I have it at times too~That would indicate a high amount of inflamation in the body.I think my highest was 58?????not sure-in that area~and I was put on low dose prednisone for a while to get that down.it worked but the side effects are to many to list-so research before you agree to go on that stuff!!It made me do nothing but think of what to eat next!
    I was told by my dr that even a sore throat would make your sed rate go up to about 20.Yours does seem high.There is a disease called polymyalgia rheumatica which the number one symptom is a high sed??just a thought,ya might want to check into that just to see if you match any other symptoms.Good luck, it sounds like your Dr is being very thorough(sorry not sure if thats spelled right-kinda doubt it!LOL) I believe getting your thyroid leveled off will help you with losing the weight you gained.keep your chin up!!let us know how you make out~
    wram regards,
    Tracey
  9. Lanie

    Lanie New Member

    I looked up polymyalgia rheumatica and it all sounds like my symptoms except I am only 29 and it effects those over 50 usually and it causes weight loss, which I unfortunately haven't been blessed with as of yet.

    I just made my appt with the endocrinologist and unfortunately it won't be till October 11. I am going to call every few days to see if I can pick up a cancellation. Thanks for your reply.
    Best wishes,
    Lanie
    P.S. You spelled thorough just fine! :)
    Don't you just hate that you cannot remember proper english and spelling with this DD???
  10. TeresaBnGA

    TeresaBnGA New Member

    Lanie,
    I have yet to lose any significant amount of weight. I thought the same as you, I would get on this thyroid hormone and off the weight would come....not that easy. :(
    I was a size 12 now a 5X. I am miserable about it. I eat like a bird and drink lots of water but nothing seems to help. I have only lost 15 pounds. Which at my size is not very much...LOL!! If you find something to try let me know. My insurance won't pay for me to have the surgery. Does your ins. pay? If so what type ins. is it? It may be worth me getting a policy and getting the surgery.
    Some of your symptoms are going to criss cross between thyroid and FMS and anything else you may have. It is weird!

    Soft hugs!
    Teresa :)
  11. Lanie

    Lanie New Member

    What a letdown! At least something good could come from more problems with me, and weight loss would definitely be a plus. I am just SO sick of being sick and heavy. I miss my normal, healthy, thin self.

    As far as insurance, I have Medspan. They are pretty great for an insurance co. They haven't said yes they will cover it, but when the time comes, because I have medical issues, they will. They covered a diet drug for me, but I didn't stick with it as it was horrible in the bowel area and I already have enough bowel issues.

    Check a couple gastric bypass sites and see what insurances are covering the people who have had the surgery already.

    Best wishes,
    Lanie
  12. TeaBisqit

    TeaBisqit Member

    I gained 130 pounds with this illness. I've only lost about thirty pounds recently and that's with doing Richard Simmons plan, not much in the way of exercise cause I can't. But I tried to follow the diet part. My thyroid tests came up bad recently. My doctor told me that she feels it's progressive and that I'll end up on the thyroid medication forever. But she said I have very high antibodies to my own thyroid gland that's why she doesn't want to give me the medication yet. So I don't know what's going on. The antibodies were at 70, that didn't look good. The weight gain has been the hardest thing for me with this illness. I was in peak physical condition when I got sick. I was working out two and half hours a day, belonged to a gym, and loved it. I have never gotten over losing my hard earned muscles. Most of the time, I just want to hide now. I moved out of state so only a few people from my home state now know how I look. I would give anything to get back my old body, but I guess it's just not meant to be :( Unfortunately, the weight gain only adds to the stigma of our illness. People look at us like we're lazy and it's so not true :(

    TeaBisqit
  13. JP

    JP New Member

    Hi Lanie,

    I saw my Rheumy yesterday for lab results. I too have a high SED rate and an autoimmune thyroid disease. I also have a positive ANA, which we continue to watch. The SED rate represents some type of inflamation in your body. It could be in one or several places. The good news about thyroid disease is that it can be treated by hormone replacement thearpy (HRT). I still have far more symptoms than I care to admit and I have only been on HRT for a few months now. We are still adjusting the dose. In my case, the HRT will be life-long due to the nature of the autoimmune condition. My SED rate changes with every repeat test. I take copious amounts of anti-imflamatory medication...without the meds, my rates are off the map. In my case, my SED rate is probably related to the inflamation in my thyroid and the arthritis in my body.

    Take care,
    JP
  14. jeanann

    jeanann New Member

    never heard of that helping the thyroid?? I found out i had a low thyroid in 1993, the doc called me at 8am and asked if i was alright. He said to get to his office now to start on synthroid. I take .150mg of synthroid and i am now stable. The thyroid is very tricky sometimes. When i found out i had a low thyroid i weighed 30 pounds less than i do now after i started taking the medication i gained weight. Many of the symptoms are similar to fm. however the all over pain is much more severe for me than with the thyroid, but i probably had fms then too. Last year i was taking the wrong dose by mistake and my thyroid went to 26, i was hospitalized 4 days then they found out it was my thyroid and hiked up the does within 1 week i was better. I also started on HRT for perimenapausal symptoms. Never heard of hrt for thyroid. Synthroid is great for me it works. Lanie i hope you learn all you can about your thyroid, for me educaiton is real important. love jean ann
  15. jeanann

    jeanann New Member

    never heard of that helping the thyroid?? I found out i had a low thyroid in 1993, the doc called me at 8am and asked if i was alright. He said to get to his office now to start on synthroid. I take .150mg of synthroid and i am now stable. The thyroid is very tricky sometimes. When i found out i had a low thyroid i weighed 30 pounds less than i do now after i started taking the medication i gained weight. Many of the symptoms are similar to fm. however the all over pain is much more severe for me than with the thyroid, but i probably had fms then too. Last year i was taking the wrong dose by mistake and my thyroid went to 26, i was hospitalized 4 days then they found out it was my thyroid and hiked up the does within 1 week i was better. I also started on HRT for perimenapausal symptoms. Never heard of hrt for thyroid. Synthroid is great for me it works. Lanie i hope you learn all you can about your thyroid, for me educaiton is real important. love jean ann
  16. JP

    JP New Member

    Hello Jean Ann,

    I saw your question regarding HRT for thyroid. Synthroid is a synthetic replacement hormone, or HRT. I have a medical background and sometimes ramble without thought. Your Synthroid is working to regulate your TSH levels, or correctly known as Thyrotropin, a hormone produced by the pituitary gland, which stimulates the thyroid gland. Synthroid is a synthetic hormone called thyroxine (T4), the primary hormone produced by the thyroid gland. Our endocrine system is very complicated. The good news is that proper lab testing can help those of us who are having difficulties with hormones, unlike FMS. It sounds like you are having good results. I have not been quite so lucky so far. The reason that I will take life-long HRT or synthetic hormones is due to my immune system attacking and destroying my thyroid gland. At some point, my thyroid gland will be gone and I will continue to increase my synthetic hormones to match what my thyroid gland should be doing. Hope this is a little clearer. Be sure to discuss with your doctor, or look up my claims for accuracy.

    Be well,
    Jan