What Causes Persistent Muscle And Joint Pain With Fatigue Despite Taking Levothyroxine?

Posted on Sat, 19 Sep 2015

Medically reviewed by Ask A Doctor - 24x7 Medical Review Team

Sat, 19 Sep 2015 Answered on

Fri, 9 Oct 2015 Last reviewed on

Question : Last year I was diagnosed with hypothyroidism and am taking Levothyroxine. However, I still have debilitating muscle and joint pain, fatigue, really dry mouth, hoarseness, dry nose/nosebleeds/sinus pain, very dry burning eyes that feel like sandpaper under my lids, pain in my ear/jaw area that hurts only when my joints are really aching. I also have a pain on top of my scalp that feels like the nerves in my scalp are burning, so painful that it hurts to lay my head down to sleep or wash my hair...which is also thinning at a scary rate. My doc suspected Sjögren's syndrome and after researching it myself it just clicked...it was like I found my answer...finally!! I had a blood test the other day and got a call from the nurse that it wasn't Sjogrens. I am having a hard time accepting this, and it seems like a lot of online Sjogren chat group members have indicated that it took years to be diagnosed, even when an initial blood test told them "no". I've read about a lip biopsy that can be done...are there any other tests that can be done? This has been going on for three years now and it is impacting my job and marriage now. Any help you can give about other tests that are available and potential medications used to treat would be most appreciated. Thank you kindly! XXXXXXX age 50

Answered by Dr. Diptanshu Das (1 hour later)

Brief Answer:
Absence of diagnostic antibodies does not mean that it is not Sjogren's

Detailed Answer:
Thanks for asking on HealthcareMagic.

I have very carefully gone through the details that you have provided and fully understand your concerns. While going through the details (before I had completed reading the entire thing), I had the vague idea that it could be Sjogren's. Sjogren's is an autoimmune disease which is generally diagnosed based on the presence of antibodies like ANA (Anti-Nuclear Antibody), RF (Rheumatoid Factor), SS-A (or Ro) and SS-B (or La). However not all patients have antibody positivity and the lack of diagnostic antibodies does not mean that it is not Sjogren's.

Although ophthalmologic (eye) tests like Schirmer Test or XXXXXXX Bengal and Lissamine Green test, as well as oral tests like Salivary Flow Measurement, Salivary scintigraphy and Salivary gland biopsy, can be done, I would not speak in favour of them.

Hypothyroidism is most often due to autoimmune cause and so is the cause behind most of the mentioned symptoms. You need not bother about whether it is Sjogren's or some other autoimmune disease of undefined name. You have the presentations and the management would be the same as that of Sjogren's. So you need not worry about what doctors label it as.

Hope that I have been able to reassure you.

Regards

Above answer was peer-reviewed by : Dr. Chakravarthy Mazumdar