Neurology Expert Forum
neurofibroma of the thyroid gland
About This Forum:

This forum is for questions and support regarding neurology issues such as: Alzheimer's Disease, ALS, Autism, Brain Cancer, Cerebral Palsy, Chronic Pain, Epilepsy, Fibromyalgia, Headaches, MS, Neuralgia, Neuropathy, Parkinson's Disease, RSD, Sleep Disorders, Stroke, Traumatic Brain Injury.

Font Size:
A
A
A
Background:
Blank
Blank
Blank
This expert forum is not accepting new questions. Please post your question in one of our medical support communities.
Blank Blank

neurofibroma of the thyroid gland

I have neurofibromatosis (NF1) and recently had a sonagram of my thyroid and they found numerous "places" on my thryoid.  They did a fine needle biopsy and they came back benign.  My endocrinologist doesn't think this is related to my neurofibromatosis, but I think it is.  Should I get another opinion?  I am scared to just leave these alone and do nothing.  I have also been on synthroid 125 for over a year and my levels are still not going up like they should.
Related Discussions
Avatar_dr_f_tn
Thanks for using the forum. I am happy to address your questions, and my answer will be based on the information you provided here. Please make sure you recognize that this forum is for educational purposes only, and it does not substitute for a formal office visit with your doctor.

Without the ability to obtain a history from you and examine you, I can not diagnose the nature of your thyroid problem nor its management. However, I will try to provide you with some information regarding this matter.

If your fine needle biopsy shows benign findings, then this is reassuring. However, it is important to keep in mind that in a very small percentage of patients with NF1, a specific type of cancer of the thyroid can occur called medullary thyroid carcinoma. Again this is rare, but an association between the two conditions has been described. Please understand I am not trying to imply I think you have thyroid cancer, but only that in patients with NF1, this needs to always be excluded, and the most important thing is regular follow-up of any thyroid region (serial examinations and surveillance). However, more commonly, thyroid lesions are benign, even in NF1 patients.

I recommend close follow-up with your neurologist and other physicians; evaluation if possible at a center that has a specialized multi-disciplinary center for neurofibromatosis may be useful to you (because their physicians would have expertise in this area).

Thank you for using the forum, I hope you find this information useful, good luck.
Blank
Continue discussion Blank
Blank
Request an Appointment
MedHelp Health Answers
Blank
Weight Tracker
Weight Tracker
Start Tracking Now
RSS Expert Activity
242532_tn?1269553979
Blank
The 3 Essentials to Ending Emotiona...
10 hrs ago by Roger Gould, M.D.Blank
242532_tn?1269553979
Blank
Control Emotional Eating with this ...
Sep 04 by Roger Gould, M.D.Blank
242532_tn?1269553979
Blank
Emotional Eating Control: How to St...
Aug 28 by Roger Gould, M.D.Blank