2 nights ago I went in for a follow up MRI for Dr B. to verify or deny a continued CSf leak. I powered the water for 2 days. Did different types of head below my waist exercises, at one point about an hour before my appointment I had the taste of CSF, and my eye started to water. dr B was nice enough to supply me with a relaxer so i never noticed i was in that tube for an hour. Hopefully if there is a continued leak he will finally see it, accept it and we can move forward. On the other hand if there is no signs of CSf what is the taste, water eye and headaches from?
Anyways, I texted Dr B to let him know I completed the test. I then called his office and there are not appointments with the very busy doc until 3/25, and so we wait.
I also had and appointment with my neuro ophth Dr E. the same day. This was basically a reestablishment type of appointment. Since I am with a new medical group they referred me to their neuro ophth, which lo an behold is my original doc who did my orbital decompression that started this whole crazy mess. Anyways we discussed my sight issues. He did an eye pressure test and basically said he thinks I have A form of charles bonnet syndrome because of the visual disturbances ie. the white flashing balls of light and the white wavy lines. I think he is grasping for something to call my issues. Upon reading up on charles bonnet syndrome I highly doubt I have this. I don’t see little people and I don’t have macular disease, plus I am not old! I only had one approval to see him so I am not sure if I am going to be referred back to him or not. I guess I will have to make an appointment with the primary doc to find out.
Today I had the appointment with the endocrinologist Dr M. Actually I saw a resident doc.( they are student doctors trying to figure out which field they want to get into when they grow up) anyways she decided that my thyroid Meds were too high based off a blood draw 3 months ago. She comment was your TSH is too low. You need to lower your Meds. Ugh this is exactly what I was afraid of happening.
She examined my thyroid that should not be there, since I has RAI 2 years ago. Said hummm the right is larger than the left. I explained that is why I keep my TSH under the norm, because when I am within range not only are my FT4 and FT3 below range,my thyroid grows, hurts and causes my voice to go horse. I have hypo symptoms cold all of the time, joint pains, etc… Except I have one issue I wanted to bring up to the Endo, I have this crazy sweating going on. One minute I am freezing then the next I am dripping in sweat. The resident stated that see your TSH is too low and you are in menopause. ok for the record i might be in peri meno, however the female doc 2 weeks ago stated that nope i am not, hoe he could tell i am not sure. Anyways, since an endo is a specialist in hormones, I asked to have my female hormones checked by blood work, she said you don’t need that it is your TSH. I demanded that she put down on her report I wanted the blood testing done.
Back story, my old endo who use to treat my thyroid was keeping me so extremely sick and stating that in needed to stay on a med that was clearly making me ill and causing issues stating that there was no other thyroid med that I could take. I’m sorry but when a med is making me violently ill I will refuse to continue to take something I know was causing the issue. That is the reason I take Armour thyroid. I don’t have the issues I had when I was on Synthroid.
Anyways she leaves the room and 45 minutes Dr M come into the room does not examine me at all goes off the residents report and states I need to lower my Meds. BS as far as I am concerned. Any what I really needed from this appointment is a prescription renewal until I can get my headaches figured out by Dr B then I can switch back to my old primary care provider that will do the testing that I require.
Dr M was going off her report so he also did not want to run the blood work but after telling him why I do not trust endos he finally agreed to run the test. So as soon as I get these results back and I can show that my female hormones are ok and my FT3&4 are fine, I will get them to start looking at the real issue of my sweating.
So that is it for now.
Hi Jules, your grace and forgiveness always amaze me. Just reading your account I began to steam and want to beat these doctors about the head. It is part of Armour’s official literature that it will lower TSH an extra amount – it is to be expected but then many endo’s don’t prescribe Armour at all so they wouldn’t know this. I hope the MRI results will be helpful one way or another!
Thanks and yes ugh frustrating.