Hi All!
Just wanted to check in with an update as I've received another response (thank you!).
Update as of 6/11:
The symptoms have not gone away, and although I can't quantify it as 'worse', things are definitely different. I don't have the total 'loss of limb' numbness all that often, but at times it feels like I'm being attacked by bees or wearing tight fitting gloves filled with pins. It's quite fun to be in the office when this happens, especially in the middle of a high level meeting...
I fired my last primary care physician/Endo after she told me that my symptoms were 'all in my head'. After weeks of her being unsympathetic and non-understanding to my constant pleas for help as I was in pain, that was the last straw. I now have a new Endo who seems very eager to help me. Although she hasn't had a patient with my exact issues before, she did confirm that my TSH still needs to be lower (it was still at 3.5 and she wants it much lower for suppression), that my B12 was at the low end of normal, and that my calcium was starting to fall off. It went from 9.2 a week after surgery to 8 and she thinks it was because of deficiency in D3. My Synthroid is now at 175 mcg daily, with the likelihood that it will be bumped to 200 mcg after my next thyroid level blood test, which is currently scheduled for early August. I will not be waiting that long and will insist that it gets done by the end of the month as I've already been on the increased dosage since May 7th. I also had a B12 shot while in her office and am taking it sublingually now. I felt pretty good for about 10 days, but then everything just came back again. My suspicion is that I may need frequent shots until things build up in my system a bit (I will be calling her about it).
I also went to see a Neurologist last week as the symptoms are not letting up, even with my modified meds. After some preliminary field tests in his office, he confirmed that I have nerve damage in my feet. I have a brain and back MRI scheduled for 6/18, and an EMG test on 6/20 to test nerve conduction. The back MRI is due to my now chronic lower back pain which started in early April. I never have had back pain in my life, and didn't do anything to injure it, but now I've been plagued with it for a couple of months. He thinks that it is related to the other neuropathy that I'm experiencing and wants to make sure. If there's any positive to the back pain, when it's at it's worst, the tingling/numbness goes away
He thinks that all of this is caused by my thyroid levels still being off and/or my Hashi's anti-bodies wrecking havoc on my nerves. Although my Endo told me that the anti-bodies cannot attack anything other than thyroid tissue, the Neuro disagrees and has seen it before. I didn't ask for the specific prognosis based on his other patients as honestly I don't want to know the answer.
So, in closing, I have some tests coming up which will hopefully give me some answers. Anything that I've read online about neuropathy is intimidating - it's a long term degenerative affliction that is hard to treat and can only usually be managed through pain meds. Oh goody...
But if there's a bright spot, I got a second and third opinion on the necessity of RAI. Both my surgeon and new Endo could not recommend that I go through with it based on the following:
-Cancerous tumor was less than 1cm (it was 8mm)
-The tumor was completly encapsulated
-13 neighboring lymph nodes were dissected and they were all clean
They both stated that the risks would outweigh the benefits for me and that I should just be closely monitored with thyroglobulin tests. This was music to my ears as I cannot fathom having to go through yet another body-altering procedure at this point...
Thanks for the kind replies - I appreciate the insight and support!