Back in 2004 I was diagnosed with low stage follicular/papillary thyroid carcinoma. (Total Thyroidectomy with central neck dissection.) Since then I have been suffering with endless symptoms such as fatigue, muscle spasms (ribcage area)muscle twitching in the theigh's and calves and most recently pins & needle feeling throughout my body especially the bottom of my feet and all my toes especially when walking and have some sort of mouth thing going on. (It's coated white) Been treated with mycelex and also penicillian. It's still there. Sometimes becoming very sore. I can't seem to handle the heat as it does make my symptoms worse as well.
I've had my blood drawn anywhere from every eight weeks to six months with the constant adjusting of synthroid. I am currently considered hyper at 0.03 however..feel as though I hypo? I have no heart palpatations or exciteably. I just feel horrible. I don't eat much and I seem to be gaining weight as well. (NOT A GOOD THING)
It's been a constant battle with going to see my pcp of whom I had for twenty plus years and getting no answers from him. I finally came to the conclusion that I needed to change my doctor. kind of hurt my feelings however..when nothing is being done and so much money is being wasted "it's time to test the new waters.
I found a new pcp and he ran a new set of blood test which show that my PTH is a little low but the calcium is in the 9.6 range. Rheumatoid factor came back at 1:40 RFQnt at <11 a little below the referance range of >12. I was then sent to a Rheumatologist who now seems to believe it is endocrine related. (Nerves & muscles)
I do have an appt. with an endocrinologist at the end of this month and can only hope this will be the last visit to a Dr. for awhile!
What type of endocrie problems can manifest from all these symptoms? Could it be some sort of Autoimmune even though the ANA & ANCA came back neg?
All input would greatly be appreciated.
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I'm sorry to hear you're dealing with such complicated issues. I can't imagine the pain and frustration you must be feeling.
Thank you for sharing your story and I hope that, if there are others dealing with any of your issues, they'll be as willing to help educate us in what to ask our doctors.
October 10, 2008 - 4:46pmThis Comment
Oh my gosh Maria,
October 10, 2008 - 4:26pmMy name is Valerie and I have been going on pretty much the same journey you have.I have Pap. thyroid cancer with follicular variant. Total thyroidectomy in 2005. Had RAI treatment 6 months after that. Ever since then which is 2 years now. I have had so much trouble with my legs and neck that I spent 2 days in the hospital.Is it worse when you get up from either sitting or lying down. Mine feels like every bone in my feet are broken and now over the 2 years the pain has progressed up to my hips. I have had a EEG,EMG,and every test known to man kind. They did say I had neuropathy,My blood test were about the same as yours but my B and D were normal so was the calcium. First they thought I had LUPUS so they treated me with anti malaria drugs. Then it wasn't.Had my ultra sound I have enlarged lymph glads I had a surgery to take the largest one out last Feb. I tried a chiropractor but that did help either. This sounds funny,but I am so glad that someone else has the same problems. How about your long and short term memory? They all say that it isn't the thyroid cancer. I am starting a new round of testing MRI,CT because I am starting to fall every once in a while.
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Thank you very much for your input. You don't know how much this means to me. For some reason alot of Dr.'s don't or would'nt even consider giving the T-3. Maybe I'll ask about adding it to my daily dose.
August 20, 2008 - 11:23amThank you again Dr. Ridha Arem and also Tina for getting the info and passing it on to the right people.
When I talked about a possibility of an autoimmune disorder is because I do have thyroid eye disease and vitiligo as well.
AGAIN......THANK YOU :)
This Comment
"Your symptoms cannot be all thyroid related. It is possible that the tingling and neuropathy symptoms are related to thyroid hormone excess which has resulted from the thyroid hormone suppressive therapy that you need for the treatment of your thyroid cancer. As you were probably told, it is important to keep the TSH low with thyroid hormone therapy to minimize the possibility of recurrence of thyroid cancer.
What your Endocrinologist needs to do is to find that fine line of very minute excess of thyroid hormone that will keep the TSH slightly low without unnecessary surplus of thyroid hormone. I have also found that a combination of T4 and T3 instead of just T4 is helpful to alleviate residual symptoms following complete removal of the thyroid. I'm not sure that I would be concerned about the PTH level since your calcium level seems to be fine. You also need to have your Vitamin D level re-checked to make sure that you no longer have the vitamin D deficiency. I cannot comment too much on your weight gain, although I have seen many patients who have too much thyroid hormone in their system, gain weight instead of losing it.
An autoimmune disorder is not excluded in your situation and that should be looked at quite thoroughly."
Dr. Ridha Arem
Dr. Arem is a world-renown thyroid expert, Board –certified in Endocrinology and Metabolism, Dr. Arem is a former teacher, researcher, and patient care provider and has done extensive research on thyroid disorders. He is a pioneer of proactive and futuristc views for how to diagnose and treat thyoid disorders. Dr. Arem is also the author of "The Thyroid Solution: A Revolutionary Mind-Body Program That Will Help You". For more information, click here.
August 20, 2008 - 9:08amThis Comment
maria19609, I'm sorry to hear that you're going through this and that you felt like your doctor was unresponsive to your needs. Sometimes, we need someone with a little bit different training and education to help find out what's going on.
In addition to forwarding your question to a thyroid expert, you may find some of the information at the below links helpful:
https://www.empowher.com/conditions/expert/thyroid/hypothyroidism/dr.-th...
https://www.empowher.com/conditions/expert/thyroid/hypothyroidism/dr.-fr...
https://www.empowher.com/conditions/expert/thyroid/hypothyroidism/dr.-th...
https://www.empowher.com/conditions/expert/audio/audio%3A-dr.-theodore-f...
https://www.empowher.com/conditions/expert/thyroid/audio%3A-dr.-friedman...
https://www.empowher.com/conditions/expert/thyroid/hypothyroidism/audio%...
Hang in there Maria. We're looking for some answers for you.
August 19, 2008 - 11:53amThis Comment