Endocrinology Appt

So I went to the endocrinologist this morning. I’ve mentioned on here before that I had Graves Disease (hyperthyroid) that started around the same time as my MAV.

I waited about an hour to see the doctor (even though I had a very early appointment), and overall the appointment was a big fat fail. I’ve had problems stabilizing my thyroid levels (I am now on medication to control my hypothyroid after killing off a good chunk of my thyroid with radioactive iodine), and he asks me “so why do you think you have this problem?” Um, isn’t that why I am here? So that you, the hormone doctor, can answer that question for me?! And then he gave me no real advice or information (even though I asked) as to alternative medications or ways to help better control it. I got my usual thyroid blood test, and that was it. What a waste.

Anyway, I asked if he thinks if there is any connection to the thyroid/hormones and MAV (since my MAV is generally worse when my thyroid is off), and he said it’s possible, since the thyroid affects so much in the body, but he doesn’t really know. Sigh. Maybe I’d have better luck if I asked a MAV expert, rather than an endocrinologist.

It’s so frustrating to spend all that time at the doctor’s office, and not get any help. I waited over a month to see this doctor, and for nothing!

Cassada, I feel your frustration. I have not been able to get any real answers for why my reactive hypoglycemia has kicked up big time since I have been dealing with my MAV issues. It may be that I am noticing the blood sugar crashes more since I am already starting off not feeling well and dizzy or it may be that the MAV issues are impacting the blood sugar directly in some way…good luck. Ben

Cassada - I am so sorry to hear that. I know how frustrating it is to have an unsuccessful appointment, especially since we feel so unwell and it is so difficult to get to the doc in the first place. Do you have a neuro appt coming up?

Hi Cassada,
I am sorry to hear about your frustrating appointment. Unfortunately as we know, we are lucky to find a neurologist who knows about MAV, so I am not surprised at the response of your endocrinologist. How are your thyroid levels? I guess it is best to let the endo just focus on that and leave the MAV hormonal link to your neurologist. Thryroid hormone is super important, maybe the most important hormone in the body, so I have confidence your neuro might be able to at least give his/her opinion. Although, most neuros, even MAV specialists usually answer such questions with “it’s possible”.


benh, I’ve been wondering about blood sugar and MAV myself. It seems that when I don’t have regular meals, or I am really hungry, my dizziness is always worse. I’m wondering if I should take a glucose test.

MavLisa, I don’t have a neuro appt scheduled yet, but I probably will get one soon. Of course, I have to go through my general practitioner and all that fun stuff, so it might be awhile before I get to see one. Btw, how are you doing? I saw your other post about your night out, and I’m so sorry you are struggling so much. Just know that you are in my thoughts and we are all here for you!

MAVNY, My TSH was a bit high last time I got it tested in June, and I won’t get my test results back from my blood draw today until at least Monday. I’ve generally been feeling better the past couple months, so I’m hoping it comes back normal. I usually feel best around a 3, but they said that I might want to be even a little lower than that if my husband and I decided to try to conceive. My TSH has just been up and down like crazy though ever since I got put on the medication, and it’s been frustrating that I haven’t been able to stabilize it. Honestly, I wasn’t expecting much of an answer about the thyroid/MAV, but I figured I would ask. Maybe I should try to see Dr. Hain next time I’m in Chicago, perhaps he would know.

Cassada - I’m doing horribly. Thanks for asking. I’m so sorry I confuse everyone’s stories. What are your symptoms? Have you yet been on meds? Sorry to make you repeat yourself.


I am not currently on meds, I am following the Heal Your Headache book. I started the migraine diet in August and went off the birth control pill a few weeks ago. If it doesn’t seem to help me enough, then I’ll consider the meds.

My BPPV began in spring 2006 and my MAV began in fall 2006 (which is also when I developed hyperthyroid). I have constant rocking sensation, feeling like the floor is dropping beneath me, everything feels like it’s moving, feel like I’m on a boat when I get out of a car, anxiety and panic attacks, etc. I am fortunately headacheless for the most part…only get bad headaches due to weather changes.

I felt beyond awful in June/July of this year, but have been feeling better since then. Maybe the diet is working a bit for me, but I probably won’t know until it’s been several months. If you want to read my introduction post, which has my more lengthy story, it’s on page 7 of the forum right now.