Total Thyroidectemy with Weird Symptoms

I had a total thyroidectemy due to papillary thyroid carcinoma on 2/18 and have had constant tingling extremities ever since.  This is sometimes accompanied by burning, stinging, cramping, and cold sensations.  I also have been having 'flare-ups' every couple of days where one second I am fine (the tingling is at a dull roar) and the next it feels like I'm being jabbed with hundreds of needles in my legs and I need to sit down as I feel like I'm walking on stilts because of instantaneous numbness.

Here are the facts:

-38 year old female - I was diagnosed hypothyroid about 14 years ago.  I have taken L-thyroxin since then.  My dose before the total thyroidectemy was 125mcg and then bumped to 137 as I had put on 20 pounds over the past year and could not lose it.  My doc wanted to get me to the lower side of normal TSH.

-My dose was bumped up to 150mcg post-surgery and I was prescribed Thyroxine.  Due to my symptoms described above, my internist (who specializes in endocrinology) said that I should go back to L-thyroxin as it was known to work well on me

-I was confirmed to have Hashimoto's after the surgery

-All of my calcium tests have come back normal - at first I was convinced that I was hypocalcemic from the surgery

-My latest blood test showed a tsh level of 14 and my doc bumped up my dosage to an extra pill once a week.  I started the increased dose on 3/6

Questions

-Has anyone else experienced symptoms like this?

-How long will it take for the increased doseage bump to do anything?  At first I was feeling a little bit better, but now is seems just as bad as ever.  The doctor told me to have my levels checked again in 4 weeks. 

-Do you think that I should get a second opinion or do I just need to be patient? 

I feel really alone right now and wish on most days that I could go back in time and just opt to not have the surgery, even though I had cancer.  I feel so much worse post surgery that I feel helpless and hopeless.

On top of all of this, my doc is telling me that I need to have RAI to destroy any residual thyroid tissue.  I cannot even think about that right now as I feel so bad and want to get this under control first.

Any experiences/advice/virtual hugs are appreciated

Thank you so much for the response and the hug - much appreciated

I have another blood test scheduled for this weekend and another follow up visit with my primary on Monday.  Regardless of how I feel, I will be starting to strategize the timing of the RAI.  Partly because I came to my senses during the last week, but also because your message solidified the fact that if I don't do it, then the surgery would have been for nothing...

The past week has been slightly better.  The tingling in my hands/feet/lips is constant, but the flare ups of the twitching/cramping muscles, total numbness, and pins and needles are happening less and less.  I actually made it nearly a whole week without a major episode, even though I did have a few minor ones during the same time period.  Seems like I'm making slow progress, but of course I want this to all get back to normal right now.

Thanks again for your response and support - I felt better after reading your message.  Mostly the part about my symptoms truly being an indication that my thyroid levels are still off, but also for giving me the kick in the butt about the RAI.

Take care!

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!