Discussions By Condition: I cannot get a diagnosis.

daily headaches, nausea, malaise, swollen lymph nodes

Posted In: I cannot get a diagnosis. 1 Replies
  • Posted By: Anonymous
  • January 29, 2008
  • 03:54 PM

Hi All,

I've been ill since October 2007. My lymph nodes were swollen but tests for Mono were negative. My EBV came back >750 (normal range is <18) and so my physician had me undergo a lymph node biopsy (from back of neck). This came back negative for lymphoma or cancer cells.

I continue to feel ill. Fatigue, Malaise,(the lymph nodes have gone down some but are still swollen). I have daily headaches (I hardly ever had headaches in all my life - I'm 48). The headaches more often than not are accompanied by nausea (I do not vomit but feel very bad). I even get light-headedness.

I run very low or no fevers. I went to the doctor yesterday and my CBC/bloodwork came back normal today.

I have autoimmune Thyroiditis and take Synthroid which regulates it. It took 2 years for my physician to figure out that I had Hashimotos and during that time I was very stiff, muscle spasms, fatigue, cold all the time, back pain. It was ME who figured out what was going on by doing loads of research online and finally requesting a thyroid antibody test. Although my TSH was often 3.5 or higher, this was considered normal (less than 5) so I suffered. The thyroid antibody came back through the roof and that is when they started treatment.

I also have herpes and occasionally have an outbreak but very few and far between.

I'm at my wits end on what to do to feel better. I cannot seem to find out what is going on by researching on the internet. My doc admits that SOMETHING is going on (because of the reactive lymph nodes and high EBV) but he does not know WHAT is going on. I am to the point where I don't even want to go to the docs anymore, since I am throwing money away and not getting a diagnosis. He now wants me to have a CAT Scan of my head this week - because he said it is not normal to have daily headaches when you never had a history of them. So, here goes more money down the drain but I doubt this will show anything since my lab tests are normal.

I FEEL SICK (like I have a virus) or like i do when my herpes is playing up. I wonder if anyone thinks this sounds like something?

Thanks in advance for your help.

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  • I am sorry you feel so ill all the time.I don't know for sure if this applies to you, but there is a rare complication of autoimmune thyroiditis called Hashimoto's Encephalopathy. At this point in time, very few doctors know about it. Many patients who have it have normal hormone levels, but elevated antibodies. It took me 8 neurologists (and 8 years) to find out my diagnosis after suffering from almost daily migraines, profound, wheelchair-type fatigue, and problems with balance and coordination...Every case of HE looks different, and mine is different from many of the other case reports out there which include (in up to 50% of patients) psychosis, seizures, and/or coma- which I never experienced (although sometimes I would be so tired I thought I could slip into a coma)...My doctor and I are planning to add my case to the literature, because it represents a "milder" form of HE. But I suspect that there are many, many more women out there who have my mild form and are being told they have chronic fatigue syndrome.HE is also known as SREAT- steroid responsive encephalopathy assoicated with autoimmune thyroiditis. This is because it responds pretty nicely to steroids. After one pulse and taper of prednisone (about 3 weeks worth altogether) and a little Levoxyl (my TSH was never really greater than 1 though), I stopped using my cane for balance, the profound weakness in my legs left, and even some of the headaches improved, although they had responded to verapamil prior to the steroids. One note of caution is that steroids can drop your thyroid function and make you feel bad while on them... I NEVER thought the profound fatigue would go away, but it did.So, I don't know if this applies to you, but I just thought I'd throw this out there, since I don't want anyone else to go through what I just did.There is one paper in the medical literature that lists fatigue and headache as the top two symptoms of HE (they looked at 18 patients).By the way, you did not mention of the lymph node swelling was limited to your neck, or all over. Thyroiditis can give you swollen lymph nodes in your neck.Also, your thyroiditis puts you at increased risk of other autoimmune diseases and so you might ask to be screened for them, as they could also explain your symptoms. In particular, you are at increased risk of celiac disease, which can cause headaches and fatigue even without GI symptoms.Hope this helps.Best Wishes!
    Anonymous 42789 Replies
    • January 30, 2008
    • 03:05 AM
    • 0
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