Next Step: 11 mos Fever, High Heart Rate, Night Sweats, .02 TSH

Discussion in 'Fibromyalgia Main Forum' started by Elisa, May 29, 2008.

  1. Elisa

    Elisa Member

    Hi All,

    I am looking to your collective wisdom to help me determine what my next steps should be. I am, in many ways, gone mentally and physically, from the battle to survive over the last year.


    As many of you know...I have had this DD 12 yrs. I have had a continuous low grade fever for 11 mos (99.5-100.5) (only had 3 breaks from the fever - 5 to 9 days/each). Now I developed more severe weakness and an elevated heart rate - of 100-145ish. I also have drenching night sweats that I wake up to - my bedroom is 65 degrees.

    Labwork - abnormal

    ANA 1:320
    TSH .02
    2 nodules on thyroid


    Completely uninterested as I have spoken about a million times. No direction, no ideas, no referrals.

    I truly need your help as I am now nearly totally bedridden - I eat a small breakfast at 5PM and an too weak to do anything.

    Have been to the ER many times - no help there.

    The realization of no help has really gotten to me lately.

    I don't know if I have the stamina to outrun this much longer. It is a terrifying feeling.

    Mostly it is sad as I think no one must believe me anymore - I have a kitchen with a half dozen thermometers -because so many say it must not be true...about having a temp this long.

    The heart beats so hard and fast my bed shakes at night - its aweful - and I don't know how to cope with it. I have been diagnosed with POTS - but the high water intake and salt is not working...

    Thanks for any ideas that may guide me. You are my community and my trusted friends and I know no where else to turn now.

    God Bless You All,


    [This Message was Edited on 05/29/2008]
    [This Message was Edited on 05/29/2008]
  2. crossword

    crossword New Member

    I have had a thyroid problem for over 50 years. My TSH is also 0.02. Range should be 0.40-4.50. Many meds have been tried, mostly Armour Thyroid. My heart rate was also high. Finally found a endocrinologist who ordered all the necessary tests, such as brain tumor, adrenal glands etc. The result is that I have a damaged pituitary gland that is suppressing the TSH in the thyroid. This new doctor took me off Armour thyroid and we are in the process of tweaking the two meds that he put me on. My heart rate has been gradually decreasing. My blood pressure is coming up to a normal range. I started seeing him last July and we are not through yet. Hope this helps.
  3. Elisa

    Elisa Member


    That is a coincidence - how did they determine that your pituatary was damaged? Do they know the cause?

    How in the world did you find a good endocrinologist - I find this area even harder to navigate. Any suggestions would be much appreciated. The endo I saw I had seen 10 yrs ago and he was on the good endo list at So much for that list...

    How does the low TSH .02 make you feel - I'd like to comapre notes to see if I'm on the right track.

    Thank you so so much for posting - it so good to know that I'm not alone in all this!

    God Bless,

    [This Message was Edited on 05/29/2008]
  4. crossword

    crossword New Member

    Had a MRI Brain scan to rule out any tumors. Of course I had complete blood work done including any and all panels. Have had many panels done over the years but no doctor could understand them. The doc that I found was the 3rd Endo and hundreds of other Md's. I was really at the end of my rope. He was recommended to me and I finally lucked out. I am not sure if I'm allowed to mention his name but here it is. Dr. Dali Chen of Endocrine Consultants Northwest located in Tacoma, Washington. It's a 3 hour round trip for me but He sure is worth it. He also spends at least one hour, sometimes one and a half, whatever it takes with me. He also accepts Medicare which is what I have. As far as to how I feel-much better, no racing and pounding heart no more low grade fever, no more night sweats. Hope this makes some kind of sense. They don't really know what caused it, either a head injury or born with it. Have had two serious head injuries so that may the cause.
    [This Message was Edited on 05/29/2008]
  5. spacee

    spacee Member

    We do have a lot of collective wisdom here. I so hope some/all of this helps you.

    Finding good docs is tough. With my whole family we have to go to doc after doc..(specialists) to find a good one. Your medical society might know of a good one. i don't know. We live in a rural area and always end up in the Big City eventually.

    One thing I know...not all endocrinologist are good.

    Hoping you find some help.

  6. Elisa

    Elisa Member


    Thank you - you made excellent points.

    I just wish I had answers. I guess I may have to write letters to these docs to ask. They may respond or not, who knows.

    I am as stumped as I ever have been - abnormal tests require some explanation or at least a referral - I can't get either.

    They seem to be eagar for the first appt $ and maybe a second appt - but after that no more feigned interest. I don't blame insurance, as many do - just a lack of good conscientious doctoring.

    I will read and re-read your post - so that it along with the others may generate some ideas for me...but I am grateful for the support. It is invaluable to me.

    God Bless,


    [This Message was Edited on 05/29/2008]
  7. Elisa

    Elisa Member

    Hi Caledonia,

    Great resources!

    I actually googled "thyroid message board" and found an expert that is willing to do a phone consult to help guide me - not a doc - Mary Shomon - a thyroid expert and author of many books on the subject. I pray she has some ideas especially on docs here in NE Ohio.

    I don't think I would have found it with out your advice and ideas...thank you so much!

    God Bless,


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