Discussions By Condition: Thyroid conditions

Persistent Undiagnosed Fever w/Hashimotos and MVP

Posted In: Thyroid conditions 26 Replies
  • Posted By: Akumal
  • November 9, 2006
  • 11:52 PM

I posted this the other day under "I can't get a diagnosis." In that room, someone else with Hashimotos and MVP said they experienced the same thing. Has anyone else had these symptoms?

Post from other room:
I have been ill for several weeks now, and the doctors have been unable to determine the cause of my symptoms. I have the following symptoms:
-- Persistent low grade fever (between 99 and 100 degrees)
-- Chills
-- Hot Flashes
-- Night Sweats
-- Body Aches (particularly in neck and back)
-- A few unexplained bruises
-- Loss of appetite

I don't know if these symptoms are related or not. I have Hashimoto's disease and mitral valve prolapse. Both of these conditions have been regulated for years. I don't believe these are related to the issue and all of the test show that these conditions are under control.

I have had blood work done several times. My white blood cell count has been normal. In fact, every test result has been normal. They have tested for HIV, lupus, leukemia, thyroid irregularities, etc.

Please help!!!

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26 Replies:

  • I wanted to chime in here, since I'm the other one who posted in the "I can't get a diagnosis" forum. I have Hashimoto's and MVP (with regurgitation), and I have another condition that I haven't been able to get diagnosed yet, that shares some similarities with Akumal's. I've been battling with this for almost four years, and this is the first time I've heard of anyone with a situation this similar to my own. My symptoms are: - Joint pain, primarily in my hips and knees, but also in my shoulders and elbows from time to time, and rarely my smaller joints. Primarily the type of ache you get when you have a high fever, but also stabbing pains and other sharp pains.- Muscle tightness with some stabbing pains in my back. Not sure if this is caused by the same thing that causes my joint pain, or is muscle tension from the stress of the pain and the illness.- Frequent (but not persistent) low grade fever, between 99 and 100 degrees. Most of the time my temperature is at ~98.5, but several times a week it'll be up over 99.- Cold feet. My feet will get sold cold that I'll need to wear three pairs of socks when it's 75 degrees inside. My toes get so cold that it feels like there is cold water in between them. Sometimes but not always accompanied by full body chills.- Night sweats, though fairly infrequently. In pursuing this with my doctors, I've been focused on the joint pain as my primary symptom. All of the symptoms have followed a relapsing/remitting course, and will flare significantly if I catch a cold or flu (the specific trigger seems to be if I run a fever over 100 degrees). My health has generally been the best during the summer, slowly getting worse during cold & flu season, and taking a nose dive if I catch something. Even with the remitting course, at my best I feel worse than I did after my first remittance, if that makes any sense. I never seem to quite get back up to the same level of health that I once was at. I bought a cane this past spring that I use occasionally. (I'm 25 years old with a small frame.) I was diagnosed with Hashimoto's before these other symptoms started up. My thyroid numbers have been good for the past two years or so, with my TSH under 1.0 and my T3 and T4 within or close to within range. My thyroid antibodies continue to be off the chart (the lab reports it as ">1000 IU/ML"), but blood taken at the same time showed my white count as normal. When I saw my endocrinologist last, I asked him if my thyroid antibodies being so high could cause the joint pain (I didn't ask about the low grade fever though), and he said no. I still have my suspicions, though. I'm also curious about why my white count would be normal when my thyroid antibodies were off the chart, and that's something I plan on following up on soon. I have had tons of blood work done, MRIs, x-rays, EEGs, EMGs, and EKGs, and the only things that have come back abnormal are my thyroid antibodies, the MVP, and something called CMV IGG Antibody, which I've been told is nothing to worry about. So is there anyone else out there with similar symptoms? Hopeful,Ryot
    Anonymous 42,789 Replies
    • November 10, 2006
    • 02:13 AM
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  • For Ryot, Your Hashimoto's - If your tests are TOTAL 3 and TOTAL 4, these tests are old, outdated and obsolete.Your need the FREE T3 & FREE T4 test done and get a copy of your results in your own hands for you to see. "Within or close" to range means nothing. It does not mean all is well. You may feel the best smack in the center of the range, or you may feel best at the high end etc. This is why you need your own copies after each lab, and write down on your sheet how you felt on the day of your labs and see what your result was. Then after each lab, you will begin to see a pattern.You will be able to see where you feel best and where you feel really bad. Keep a record. Then you will have "your" very own range number to thrive for.You said your thyroid antibodies continue to be off the chart. This means you still are in ACTIVE thyroid disease (Hashimoto's) thus, you feel badly. TPO Thyroid Peroxidose Antibody Test (suggests cause of thyroid disease is due to autoimmune disease such as Hashimoto's. TSI Thyroid Antibodies that cause Hyper in Graves Disease. **"Normal" or healthy people DO NOT have these antibodies. You said since your thyroid antibodies being so high, could it cause joint pain. Your dr. said no.Your dr. is wrong. Since people with Hyperthyroidism and Hypothyroidism have TPO and TSI antibodies, when Hypo, we tend to get joint pain. That's one of the symptoms. Your dr. needs to get his or her head out of the sand.Most of your symptoms lean towards being Hypo. Some people get some of them being Hyper. Your low grade fever aims at CMV. You need to take your health into your own hands and do some research since your dr. said NOT TO WORRY?? about your ABNORMAL result of your CMV IGG antibody test. I would run from this doctor!! A person without previous exposure to CMV will test negative.Abnormal results, this means there is the presence of antibodies which means the person has been infected with CMV, either now or in the past. People with weak immune systems may not generate antibodies against CMV.Your dr. just brushing off your result of CMV IGG is doing you a great disservice. See your test results with your own eyes, and tell him you want a copy. Never, never, never take the doctor's word for anything. Doctors make many mistakes. Just do a google search on CMV IGG and there is information waiting for you.Hope this helps.
    Anonymous 42,789 Replies
    • November 24, 2006
    • 02:10 PM
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  • Hi, thank you for your reply. I do and have always kept copies of all of my labwork, so I should be able to answer most of your points just by looking at my records. I have kept a daily journal of how I am feeling and at what times I take medication, every single day for several years now. However, all of my doctors (and I have seen several dozen over the past four years) believe that I have three separate autoimmune diseases active currently -- Hashimoto's, Alopecia Areata, and a third autoimmune disease that they are working to diagnose. Having more than one autoimmune disease means that you can't tie a symptom to a disease very easily. For instance, right now I am experiencing more than triple my normal amount of hair loss. Is this caused by the Hashimoto's, or the Alopecia? I have to wait at least six months before I can say, because it will take that long to see if the hair loss is in round spots typical of Alopecia, or if it is diffuse as is caused by Hashimoto's. And there's nothing to say that I couldn't have hair loss right now from both diseases, which further complicates the issue. By keeping a detailed health journal, I have noticed several patterns in this third, undiagnosed autoimmune disease. For instance, my symptoms are worst in the winter, and more mild in the summer. If I run a fever over 100 degrees, my symptoms will spike dramatically, and will continue to be worse for four to six months after. I have found patterns in how I feel based on exercise, sleep, stress, travel, etc. However, there has been no pattern whatsoever that conforms to my thyroid numbers. This third disease first started after I caught the flu around New Years 2004, which was about four months after my initial Hashimoto's diagnosis. My TSH at the time was 4.21 and my Free T4 was 1.3. My endocrinologist was not satisfied with that TSH, and so increased my thyroid medication. My thyroid numbers have only gotten better in the years since, while the symptoms of this third disease have worsened significantly. All of the symptoms I originally presented with before my Hashimoto's diagnosis have gone away completely, including hypoglycemia (I was blessed with a fantastic endocrinologist who knew that hypothyroid could sometimes cause mild hypoglycemia), brain fog, dry skin, etc. When the symptoms and the lab results for one disease move in a positive direction, but other symptoms worsen independently, it is quite obvious to me and to all my doctors that there is a third, unrelated autoimmune disease at work. As for my most recent thyroid numbers, I am having my thyroid numbers rechecked next week, but my last test put my TSH at 1.14, my Free T4 at 1.4, my Total T4 at 14.1 (just slightly above range), and my Free T3 at 310 (smack dab in the middle of the range). The last time my thyroid antibodies were run, my Thyroglobulin Antibodies were at 2218 (normal is under 20), and my TPO was reported as ">1000", with normal being under 35. If I did not have any other autoimmune diseases, I probably would be able to chart my health against my labwork, and find the TSH, T3, and T4 levels at which I feel the best. But as I said above, having three autoimmune diseases complicates everything. I have kept an eye on my thyroid numbers to make sure that there is no correlation between my thyroid and my joint pain, and I can say without a doubt that my TSH, T3, and T4 are in NO WAY connect to how bad my joint pain is. I still think that there is a small chance my thyroid antibodies could be playing a role in my joint pain, but since they have always been reported as "greater than the lab's range", I have no way to track changes in that accurately. I have also had four separate doctors tell me that the level and the type of joint pain that I am experiencing could not be caused by elevated thyroid antibodies. They are sure there is something else going on, and I am not about to stop them in their effort to diagnose me. That said, if you know of any research documenting high thyroid antibodies causing joint pain, please let me know where I can find it. The current team of doctors I am working with are very interested in exploring all avenues, and are very responsive to all suggestions I bring to them. As for the CMV IGG antibodies, I have done a lot of research into it, as have my doctors. My doctors believe this is indicative of an older infection, rather than a current issue. We have not found anything, on Google or in medical journals, that would connect the CMV IGG antibodies to my symptoms. But again, if you know of scientific research that says otherwise, please let me know. The low-grade fevers could point to any number of things, including several other types of autoimmune diseases (Lupus, MS, and others). My rheumatologist will be running a long list of blood tests when I go in next week, to see if we can track down what's causing the frequent (four to seven times a week) low grade fevers. Despite all off the confusion and difficulty trying to get the correct diagnosis, I wouldn't trade my doctors in for anything. The team I have now is interested in finding the correct diagnosis, and they are quite willing to work with me and follow up on my ideas (for instance, I had x-rays done this past summer to rule out Ankylosing Spondylitis, which I found through my own research and which still fits my symptoms better than anything else we have looked into). But they are also hugely interested in treating my symptoms, even without a diagnosis, which is not something all doctors are willing to do. I wouldn't be able to function at all without the medication and other treatments this team of doctors have prescribed. And they are talking more and more about sending me to a Mayo clinic if they aren't able to find a diagnosis for me soon. Anyway, thank you for your post. If you do know of research regarding either joint pain with high thyroid antibodies, or joint pain with CMV IGG antibodies, do let me know. My doctors would be quite interested to see that. ~Ryot
    Anonymous 42,789 Replies
    • November 24, 2006
    • 08:50 PM
    • 0
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  • Could someone explain CMV? What does it stand for exactly? (I have many of the same symptoms discussed in the previous posts).
    Anonymous 42,789 Replies
    • November 25, 2006
    • 02:18 AM
    • 0
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  • I am very new to this. Was diagnosed with Hashimotos last August and was put on 60 mg (or micro grams?, not sure) of Armour Thyroid. My TSH was 3.85 and antibodies 115. I also had nodules of 1.5 cm and a few cysts. Doc recommended a Fine Needle Aspiration but on the day this was booked ( about a month of taking Armour) the clinic in Weston ( very new with latest ultra sound equipment) could not find a thing and sent me home. They could not perform the biopsy as " there was nothing there to do the biopsy on". I took another blood test and this time TSH was o.o85 way too low. My dosage was adjusted to 30 mg and today I went to my primary to request to see another endocrinologist ( the one I have is quite nice, I feel like a child when I see him, he does not answer my questions and at 48 years old, I don't accept the higher powers of the all mighty doctors..;-). Today my primary felt again an enlarged thyroid... in August on 60 mg it had disappeared and nothing abnormal showed up on the utlra sound?? very confusing! I have also noticed that my hair has gotton thinner even though it does not seem to fall out??For years I have suffered (yes really suffered!) with hormone imbalances. I was swollen (eyelids, nose, legs, feet stomache) for at least 3 weeks a month and the headaches were amazing. Now I am on Estrogel and Nuvaring and this does seem to help. I have lost my libido completely and have become very very forgetful! My question is if things improve on Armour? No idea ( Hashimotos runs in my family as well as myastenia gravis).
    tiredinmiami 2 Replies
    • December 23, 2006
    • 02:42 AM
    • 0
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  • I am very new to this. Was diagnosed with Hashimotos last August and was put on 60 mg (or micro grams?, not sure) of Armour Thyroid. My TSH was 3.85 and antibodies 115. I also had nodules of 1.5 cm and a few cysts. Doc recommended a Fine Needle Aspiration but on the day this was booked ( about a month of taking Armour) the clinic in Weston ( very new with latest ultra sound equipment) could not find a thing and sent me home. They could not perform the biopsy as " there was nothing there to do the biopsy on". I took another blood test and this time TSH was o.o85 way too low. My dosage was adjusted to 30 mg and today I went to my primary to request to see another endocrinologist ( the one I have is quite nice, I feel like a child when I see him, he does not answer my questions and at 48 years old, I don't accept the higher powers of the all mighty doctors..;-). Today my primary felt again an enlarged thyroid... in August on 60 mg it had disappeared and nothing abnormal showed up on the utlra sound?? very confusing! I have also noticed that my hair has gotton thinner even though it does not seem to fall out??For years I have suffered (yes really suffered!) with hormone imbalances. I was swollen (eyelids, nose, legs, feet stomache) for at least 3 weeks a month and the headaches were amazing. Now I am on Estrogel and Nuvaring and this does seem to help. I have lost my libido completely and have become very very forgetful! My question is if things improve on Armour? No idea ( Hashimotos runs in my family as well as myastenia gravis).
    tiredinmiami 2 Replies
    • December 23, 2006
    • 02:44 AM
    • 0
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  • for the first person, that has the fever and chills and body aches and night sweats....i have just those exact same things but do not have any sort of diagnosis like u do. are you starting to use the nuvaring birthcontrol contraceptive by any chance??? i was wondering if those were some side effects or of that was my body telling me that im possi bly pregnanat and shouldnt be using the ring or if it is just my body rejecting the medication. please email me with your responce. i am scared and hopefully someone can help me before its too late. volcom282@charter.net
    Anonymous 42,789 Replies
    • January 28, 2007
    • 06:18 AM
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  • About a month ago, I started having a fever of between 99-199 degrees. I figured it was because I have had a battle with sinus infections. I've been on 3 different antibiotics and it seems like the infection is gone. During this time, I was diagnosed with Hashimoto's with my TPO test (antibody) at 116 (normal is 35). My TSH was normal. I have been off antibiotics for 3 days and on my thyroid meds for 3 days also. My fever is persisting. I am 43 yrs old and have always been healthy. I went for a second opinion to an endocronologist who told me there are NO symptoms to Hashimotos, and all my symptoms (which are all characteristic of Hashimotos that I've read about and my regular doctor says is related) were probably due to possible sleep apnea. He obvoiusly didn't believe me. He said I didn't need to have my TSH or TPO tested for 2-3 years. I have never been a depressed person or one to get irritated so quickly. I'm so exhausted all the time and so forgetful. I went back to my regular doctor who said he obviously wasn't listening to my symptoms and was totally going by the TSH test results. I'm pretty confused right now and am wondering if anyone else with Hashimoto's has experienced fevers with it. They are doing further blood tests to try to find out if I am fighting an infection or not. I'm hoping it is related to the Hashinmoto's and that when my meds start getting that under control, that my fever will go away. How long did it take before most of you started getting relief from the symptoms after starting your meds? What dosage have you had to take before the symptoms were gone. I just want my life back and I can't wait to feel normal again and maybe be able to loose some weight. Did many of you actually find it easier to loose weight after treatment? How fast did you loose it and how much? Did you get your energy back? Thanks for your input.
    Anonymous 42,789 Replies
    • January 30, 2007
    • 05:07 AM
    • 0
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  • OOPS! I meant my fever was between 99-100 degrees, NOT 199 degrees! Big typing error!
    Anonymous 42,789 Replies
    • January 30, 2007
    • 05:10 AM
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  • I'm glad you aren't a nurse with that typing error. :)
    Anonymous 42,789 Replies
    • February 2, 2007
    • 01:48 AM
    • 0
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  • I want to thank everyone who posted to my message. (I am the original poster.) After several months/tests/doctors, we have finally figured out what it is wrong. I am on a beta blocker to treat my MVP/Mitral Regurgitation. My blood pressure and bpm have been extremely low as a result of my thyroid condition in conjunction with the beta blockers. My bmp drops well below 50 when I am sleeping. I am writing this to encourage everyone to look at what you are taking/eating/etc. when trying to determine what is causing your issues. I went to soooooooo many doctors. None of them paid attention to the fact that my bp and bpm were low. They took it as a sign that I was healthy. It took an very observant cardiologist to realize what was happening. I have been off the beta blocker for a few days now, and I feel great. Best wishes to you all
    Anonymous 42,789 Replies
    • February 8, 2007
    • 01:46 AM
    • 0
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  • I'm the one who made the horrible typing error on my temp. I am still waiting for anyone who has any ideas to write! It has been over 5 weeks now with this fever. At times, it is going over 100 degrees now. It comes and goes throughout the day. It makes me achy and lifeless. Can't seem to sleep at night very well. I haven't noticed any difference since I started synthroid. I am 100 mcg now. My doctor said it may take longer. It has been 2 -1/2 weeks now on them. I'm still waiting. They tested my white blood cell count again and it is on the high end of normal. They just did a CT scan of my sinuses to make sure I don't have some pockets of encapsalated infection in there. I will get the results on Mon. The tech said she didn't see anything obvious, but the Dr. will read them. No answer for my fever so far. I do have headaches alot. That may go with the Hashimotos? What kind of Dr should I be going to next? There are only 2 endocronologists in our area and one is the guy who told me there are no symptoms to Hashimotos and the other works with him. My doctor said that she will send me to a hemotologist next if this CT scan doesn't show anything. Does that make sense? I still have many of the typical symptoms of Hashimotos that I have read about. Please tell me these meds will start working soon! Thanks to anyone with any advice for me.
    Anonymous 42,789 Replies
    • February 10, 2007
    • 06:17 AM
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  • It sounds like you might have Fibromyalgia. Look into it.
    Anonymous 42,789 Replies Flag this Response
  • Check into Hashimoto's Encephalopathy. Are you running into things more often?
    Anonymous 42,789 Replies Flag this Response
  • Thanks. I did some checking and I have some of the right symptoms for that, but not running into things, just some dizzy spells once in awhile. I will ask my dr. about it.
    Anonymous 42,789 Replies Flag this Response
  • I'm in the process of a Hypothyroid/Hashimoto's diagnosis right now. The last two summers, once in July and once in August, I ran a fever for 6-7 days in a row...not normal. The fevers were remarkably similar and I had lab work for both. In the first one my liver enzymes were very elevated, even though I was not taking acetaminophen with the fever, just ibuprofen. These cleared up within a few weeks. With this fever I experienced EXTREME pain/sensitivity on my skin. I had horrible chills and got goosebumps from being so cold. The goosebumps were very painful. With the second fever, my white count was low. This also cleared up over time. I had horrible joint pain and fatigue with this fever. I couldn't roll over in bed without falling asleep. Both fevers were thought to be caused by viruses. Also in the summer of the first fever, in May I had sinus infection that was not cleared with antibiotics. It returned and I ended up with both a sinus infection and broncitis. I was put on a double dose of antibiotics and a steroid and eventually recovered.I have wondered a lot about whether these are related to the problems I am having right now, which include:-Sore throat on one side of my throat for 2 months. After it went away I developed a tightness/lump in my throat feeling.-Daily headaches. Not horrible, usually go away with advil, but they come back the next day.-Weight gain (Est. 10-15lbs since August without change in diet/exercise)-Joint pain/Muscle cramps-Swelling of legs-Fatigue-Shortness of breath with mild exertionTSH was 3.49 (.5-5.5 range)FT4 was 1.2 ( .8-1.8)2 Thyroid cysts (3mmx2mm), 1 in each lobe of the thyroid
    Anonymous 42,789 Replies Flag this Response
  • I posted the last post.I didn't mention-Cold intoleranceand that the fevers generally ran between 99-100 for the first 1-2 days and then they were between 101-104 for the next 2-3 days and falling back in the 100-101 range at the last days.
    Anonymous 42,789 Replies Flag this Response
  • Hi,I was diagnosed with Hashimotos over 5 years ago. Since, I have suffered from extreme pain in my upper back and neck and just generalized muscle pains. I started taking my temp at work a few months ago, and realized that I consistently ran between 99.3-100.1 most of the time.--definitely getting worse as the day went on. I am whipped, sick of being sick and want answers. All of my physicians, including an endocrinologist from Johns Hopkins says "i am in a normal range for my TSH" with the synthroid I am on.He has no explanation for my pulse rate staying around 59 through my lab results have my TSH in the Hyperthyroid range. He doesn't "usually see muscle aches and pains" with Hashimotos." Prior to my slow slide towards the diagnosis of Hashimotos, I had been very active, participating in a running, swimming, biking event, and even sub-contracted my own home. I could not run to the end of the driveway at this point. Anyone have any ideas?Thanks
    Anonymous 42,789 Replies Flag this Response
  • Hi Ryot,I noticed that you said your condition was better in the summer and worse in the winter. This reminded me of an article I read in Scientific American about Vitamin D and its effects on the Immune System:http://www.sciam.com/article.cfm?id=cell-defenses-and-the-sunshine-vitaminI'm no doctor and and I don't know what part of the country you live in (how much sunshine you get), but that statement made me think that low levels of Vitamin D (due to lack of sunshine in the winter) may make your condition worse. To quote the third bullet point at the start of the article: Clear associations between low vitamin D levels and cancers, autoimmunity, infectious diseases and other conditions suggest that current daily intake recommendations for this critical nutrient need revision.In fact, within a couple of months of my reading this article, I saw several news articles about the positive effects of Vitamin D on the immune system and that they raised the recommended amount of Vitamin D intake for children.I hope that helps.-Keith
    Keith111 2 Replies
    • December 21, 2008
    • 07:50 PM
    • 0
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  • Hi Ryot,I noticed that you said your condition was better in the summer and worse in the winter. This reminded me of an article I read in Scientific American about Vitamin D and its effects on the Immune System:http://www.sciam.com/article.cfm?id=cell-defenses-and-the-sunshine-vitaminI'm no doctor and and I don't know what part of the country you live in (how much sunshine you get), but that statement made me think that low levels of Vitamin D (due to lack of sunshine in the winter) may make your condition worse. To quote the third bullet point at the start of the article:Clear associations between low vitamin D levels and cancers, autoimmunity, infectious diseases and other conditions suggest that current daily intake recommendations for this critical nutrient need revision.In fact, within a couple of months of my reading this article, I saw several news articles about the positive effects of Vitamin D on the immune system and that they raised the recommended amount of Vitamin D intake for children.I hope that helps.-Keith
    Keith111 2 Replies
    • December 21, 2008
    • 08:03 PM
    • 0
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