Quality of life suffering significantly!! Help appreciated!

[norroc]

Thank you for anyone who can help with a direction I need to be going in medically.   I will try to keep this brief, in a nutshell...I was diagnosed with hypothyroid 19 years ago by my OB doc after the birth of my son and followed up with Endo and been on levoxyl ever since.  No issues or symptoms after starting RX.  Then 7 years ago, I started having horrible muscle spasm (mostly shoulders and back, but eventually head to toe body pain). Muscle spasm lasted 2-4 weeks and then I would be symptom free for months, until they started up again.  I have seen many specialists over the years, and had much testing done (MRI, ultrasounds, CT scans, and lab work infinity.  From those tests I was further diagnosed with pernicious anemia, Vitamin D deficiency and hashimoto's thyroiditis (per ultrasound).  This past year my symptoms have increased and specifically the last 5 months have been extremely difficult.  5 months straight of muscle spasms with little to no relief from nerve block injections, muscle relaxers, pain pills.  I am in my early 40s and feel like the rug has been pulled out from under me.  All my lab work shows in the the "normal" range.  Seems like every doctor wants to refer me to another doctor, and on and on.  My last 4 weeks have consisted of....

· weight gain (9 lbs in less that 2 weeks)
· severe muscle spasms,
· night sweats, sheets soaked and then I'm teethchattering freezing
· zombie fatigue,
· so much hair loss,
· constipation,
· sweating then freezing within the same minute
Physically I'm a wreck and quite honestly it is taking a HUGE toll on me mentally and emotionally.  Praying for relief and open to any ideas that people have offered.  I take b12 injections daily, 2250IU Vit D daily, and 112 mcg levoxyl daily.  The worst part of it is, my condition is hurting my family.  I feel so guilty that my kids are equally suffering and caring the burden as well with Mom not feeling good.  Any feedback is greatly appreciated.

[Barb135]

What dose of Levoxyl are you on?  How long have you been on the same dose?  What med did you switch to when Levoxyl was taken off the market last year?  Did you maintain the same dosage as you'd been on with Levoxyl?

Do you have any neuropathy resulting from B-12 deficiency?

[norroc]

I was diagnosed with hypo in 1994 because my tsh level was "off the charts" my OB dr said.  In 2007 after a scope procedure the GI doc diagnosed me with autoimmune pernicious anemia, hence the b12 shots.  Also in 2007 ultrasound of thyroid indicated Hashimotos.  June 2014 another ultrasound also indicated autoimmune hashimotos with the right measurements 1.4x7.2x4.8cm and left measurements 1.7x7x4mm and isthmus 2mm.  Yes, mm not cm.  my left side of neck has always had an ache burning sensation to it and there is a noticeable bulge when I swallow but no ultrasounds have noted any nodules.  I should have my labs back in a few days for free T3, magnesium and PTH, also  another free t4 & TSH.  

[Barb135]

Typically, injected B-12 stays in the system much longer than other delivery methods, which is why it's most often prescribed for Pernicious Anemia.

I agree that TSH is a tad on the high side, but FT4 is at 60%, so that doesn't indicate hypo, unless you aren't converting FT4 to FT3... You should try to get your doctor to test FT3.

You have the TPOab, but what about Thyroglobulin Antibodies (TgAb)?  Those also need to be done in order to rule out Hashimoto's.  They are both markers for it.

[Red_Star]

I take 2000 mcg of sublingual B12 spray daily for autoimmune pernicious anaemia and have done so for over 5 years. So happy to not have to inject needles. I could not go a month without B12!! Crazy talk. I'm seeing symptoms show up very soon after stopping B12.

TSH is a bit high.  Calcium serum looks too low.  Try the chvostek sign (youtube demo on youtube). This is my slam dunk sign of calcium deficiency.  

[norroc]

I have been doing the b12 shots for 7 years now.  Usually 2ml monthly but when labs show low levels then I go to shots daily for 10 days, then weekly for 4 weeks and back to monthly based on where the updated lab results are.  All the symptoms I've been having for years, except the body temp issues.  Last night I had goosebumps sitting outside in 86 degree weather and I can be sweating from my head to legs in air conditioning.  The nughtsweats has been limited to a few times over the past 7 years but as of this week, it has been every night.  I am nauseous almost always and vomit quite a bit, with little appetite so the rapid weight gain in such a short period of time is odd.  Thank you for your responses!

[norroc]

Labs done 5/20/14
TSH 3.03 (range .40-4.50)
Free t4 1.4 (range .8-1.8)
Anti-TPO <1 (range <9
Calcium 8.8 (range 8.6-10.2)
Potassium 4.2 ( range 3.5-5.3)
Sodium 139 (range 135-146)
ANA screen negative
Still awaiting free T3 , PTH, magnesium and phosphorus results done last week