TS-HDS Antibody and Small Fiber Neuropathy

Thank you all for the quick responses. This will be very helpful for my appointment with my neurologist this week.

@johnbishop, I appreciate the warm welcome. To answer your question, I am on a waitlist for an NIH study on people who developed severe reactions after the COVID vaccine. My mother and I both developed neuropathy after the mRNA vaccines, and I have now tested positive for the TS-HDS antibodies as well as other autoimmune antibodies for thyroid disease and lupus. If anyone else has had a similar experience, you can contact Angelique Gavin, NIH/NINDS Clinical Operations Manager, to request to be part of this study.

From Angelique:
"We are currently developing an online survey system to collect stories about people’s complications after receiving COVID vaccines. At this time, if you are willing, we can take your name and contact information. We will reach back out to you when the survey system is completed to see if you are willing to volunteer in our on-line study."

Erin, Thanks for sharing this information. Hoping this will provide a lot of data and help in the not so distant future.

Mine were 17,000 the one time I've had them tested about a year ago at Duke. My FGFR3 values were slightly elevated (4k). I'm 56 and have been dealing with intermittent SFN symptoms about 13 years (feet, hands and chest) and received a formal diagnosis of SFN last year. Review of my labs for past decade or so reveal that I have been slightly creeping into the pre-diabetic range. Therefore, I'm trying to radically address that with diet and exercise. Also experimenting with taking a lose dose of Metformin. During periods when symptoms get bad, I start back up on my low dose of Gabapentin which definitely helps to take the edge off. I do not know whether intermittent use of that medication is recommended but it seems to be working for me and hopefully helps to avoid building up intolerance to the drug so that it is more effective when my symptoms get worse.

Where did you get testing done for the FGFR3 and TS HDS antibodies? Can any lab do it? I requested these tests from my neurologist at Hopkins and he’s never heard of them. Said he didn’t know where to get me tested for it. I’ve been dealing with neuropathy since my first Pfizer vaccine 9 months ago.

Hi John, Please share the information about the NIH study for covid vaccine complications with the covid vaccine discussion group. Thanks.

Hi Erin, Would you mind post a link to the NIH study? Are they still recruiting people to participate in the study?

CellTrend lab in Germany will test for TSHDS antibodies. You would have to ship a blood sample. They are equipped to accept samples shipped internationally. You can Google them.

Thank you

Hello all,
I developed symptoms after vaccination that, until today, two neurologists have been stumped. The only abnormal test result is this TSHDS. The least of my concerns has been sensory. Has anyone here had motor / msuculatory symptoms, like fasciculations or spasms, or bulbar symptoms? Thank you for your collaborative efforts in creating this chain.

My initial symptom, which started 2 weeks after the first Pfizer vaccine, was muscle spasms in my feet. I subsequently developed sensory and motor peripheral neuropathy. I have some fasciculations. Many people in the Neuro V Long-Haulers group on Facebook are reporting fasciculations due to the vaccines. The doctors don't know how to treat us because this is a new phenomenon due to the new Covid vaccine technology. Many patients are reporting like you that their only abnormal test result is TSHDS.