Issues with throbbing in neck: VNS or a thyroid problem

@jaderm, I wonder if @jakedduck1 @carnation @lsittll @santosha may have some insights for you.

Jade, did you talk to your doctor about this? Have you had thyroid issues in the past?

Hi @colleenyoung and @jaderm, Good Evening to both of you!
Unfortunately, I have little to add as my knowledge of VNS is quite limited.
@jaderm, I would also advise you to talk to your epileptologist about that, if you had not already done that. Who has been taking care of your thyroid problem? Endocrinologist?

Hello. So I had a VNS placed 6 years ago for my epilepsy. That surgery requires leads to be placed in left side of neck. Depending on how high settings are it can effect your voice. Anyhow. My vitamin d levels have been low for along time. Diagnosed with hypothyroidism about a year ago. All I do is work and sleep. My feet are constantly cold but there are times when I’m hot too. I don’t have a appointment with a endocrinologist for 8 months. So I made a appointment to get a full thyroid panel done with a dr that uses hormone pellets to treat her patients. Has anyone had success with this treatment? I’m currently on 77mg of generic synthroid. Sry for the long post
M

Yes mam. I just had a appointment with my neurologist. He wants me to get it on video. He did say it’s not normal. The thyroid issues are pretty new as far as I know. I thought I was going through pre menopause and found out I was hypothyroidism about 2 months ago.

I’m sorry as I’m barely seeing these messages. My gynecologist is the one who found my hypothyroidism but not doing full blood work up on it. Unfortunately the only endocrinologist that takes my insurance is booked 8 months out. I do have a appointment this Monday for a full panel of blood work to be done by a NP. If I’m way off I might have to take the route of paying outa pocket. I sure wish I wasn’t so far from one of the Mayo Clinic’s. That would definitely be my first option

Great @jaderm. I have no experience in this kind of treatment. But perhaps another member can help you in this respect, sharing his or her experience with you?
All the best!
Santosha

@jaderm, if you have the means to pay an endocrinologist out of your pocket, I would do it. Health in the first place, in my opinion. Waiting months for a doctor from your insurance to be treated, can cost you more at the end of it. My epileptologist does also not take my insurance. But I thank for having him as my doctor!
I believe that with Covid it is now possible to have video appointment with a doctor/endocrinologist at Mayo Clinic. Check this out, if physical examination would be necessary. All your exams I believe that could be sent through the internet or not? Just ideas.
Santosha

@jaderm
Like @santosha I have no Thyroid or VNS experience but am interested in your Epilepsy.
You mentioned “My vitamin d levels have been low for along time”
Low vitamin D is common in epilepsy patients taking seizure medications. My seizure meds ares enzyme inducers which interfere with vitamin D. My mom had Thyroid problems and her doctor put her on vitamin D supplement so you might so it’s no wonder you D is low. Do you know what your level is? Have you discussed if your meds are responsible for your low D level and if you should supplement?
What seizure meds are you on? Has the I see the VNS helped your seizures. How long have you had them and what type/s.
Jake

Yes mam. I’m definitely looking for one at the moment. I can’t wait 8 months. I never knew your thyroid could cause so many issues. Thank you for reaching out

They have been low for around a year. My epileptolgist kept telling me how important it was for me to take my d supplements. However I wasn’t taking it everyday. One I mentioned my thyroid problem he didn’t say it was due to levels being low for a long time but I wonder if that’s the issue as anti seizure meds do cause low d levels. Im currently on lamictal, Aptiom ( Onfi and Topamax. Diagnosed at age 12 now 36. Complex partials is what I have