Horrible Neck Spasms 11 months after Thyroidectomy

[Gracevd70]

Recently I've been sufferring horrible muscle spasms on both sides of my neck and they are very random and just recently for the past couple weeks. I have never experienced this and my tendons on both sides of my neck stick up and are hard as a rock and the pain is worse then my feet cramps...ouch.  Is this common after thyroidectomy ?

I won't have another blood test until December per my Endo I should see a psycologist because Im unhappy with my current level of health because my blood test are "perfect" I guess thats true if your not the one that feels like road kill almost everyday.

My June levels are:
T3 = 121 (Range) 80 - 200 (Im only allowed 5mg of cytomel)
FT4 = 1.62 (Range) .93 -1.7
TSH = 0.812 (Range) 0.27 - 4.20

He claims Im borderline hyper but I feel like road kill and now these neck spasms on top of feet cramps.

Thanks

[gimel]

Most doctors don't really understand how to go about diagnosing hypothyroidism.  They only pay attention to blood test results, which is totally inadequate.  Symptoms are the most important indictor and should be emphasized at any appointment with the doctor.  So please look at the following link that lists 26 symptoms that are typical of hypothyroidism, and tell us which ones you have.  

http://endocrine-system.emedtv.com/hypothyroidism/hypothyroidism-symptoms-and-signs.html

I see no reason to have to wait until Dec. to try and get some help from a doctor, so let's see what we can do to push for that.

[gimel]

No, and neither is foot cramping and "feeling like roadkill'.  You need to be concerned enough to get your doctor to do the right things, or find a good thyroid doctor elsewhere.

I highly recommend getting your doctor to run the additional tests listed in Sugg. 4 on page 2 of the link above.  Since your prior tests were in June, you need another Free T4, plus Free T3 (not totalT3), Reverse T3, cortisol, Vitamin D, B12 and ferritin.  Do you think you can make that happen?  

Back to a prior question.  What time did you take your thyroid med for the June tests, and what time was the blood draw?

[Gracevd70]

I take my thyroid meds 4:15 in the morning and I get my blood work around 8am.

I've read that I should take my thyroid meds after I have my blood drawn to get a more accurate result based on levels rising after taking meds? I will do this if it will work.

My current Endo is new and sadly he isnt much better then the first endo who I couldnt stand.  I can't do much now blood test wise unless these neck spasms get worse or I can't take them any longer and assuming my Endo will even entertain my complaint Im pretty much stuck. However if I manage to hang on until Dec and my blood comes back as "perfect" per him and I still feel wrong I will go to a hormone specialist on my own dime someone who can look at all of my hormones Female and Thyroid (Ovarian Cancer 15 yrs ago)so I have no natural hormones all pill form and maybe its a combo of issues between thyroid & Estrogen thats to blame. Yes Endo is aware of my Estrogen use and doesn't faze him.

In the meantime I will go back on my Vitamins (Calcium,B-Complex, Selinium and Zinc)

[gimel]

How can your blood tests be "perfect" if you still have symptoms that are frequently related to being hypothyroid?  Thyroidectomy patients of course require a full daily replacement dosage of thyroid med to feel normal.  With most doctors this is usually only T4.  Unfortunately with T4 only most patients do not adequately convert the T4 to T3, resulting in high in range FT4, but FT3 that is too low.  I suspect that is the case with you, based on your Total T3, but your doctor did not even test for Free T3, as should be done every time you go in for tests.  

The doctor thinks you are borderline hyper likely because of your FT4 level; however, FT4 is a prohormone whose function is to be converted into T3 which is metabolized in all the tissues of the body.  There are many variables that affect conversion of T4 to T3.  In the absence of good conversion, adequate T3 med is required.  You are taking only 5 mcg of T3, when you need a significantly higher dose, based only on your Total T3 level of 121, which is only 19% of its range. Your Free T3 may be even lower in its range.

A good thyroid doctor will treat a hypo patient clinically, by testing and adjusting FT4 and FT3 levels as needed to relieve hypo symptoms.  Many of us have found that we needed FT4 at least mid-range, and FT3 in the upper third of the range, and adjusted as necessary to relieve symptoms.  Symptom relief should be all important, not just test results, and especially not TSH results when taking thyroid med.  I say this because hypo patients taking adequate thyroid med frequently find that their TSH becomes suppressed below range.  Most doctors don't understand this and will automatically say you are hyper.  In reality you are hyper only if having hyper symptoms due to excessive levels of Free T4 and Free T3.

In addition hypo patients are frequently deficient in Vitamin D, B12 and ferritin, so you should test and supplement as needed to optimize.  D should be at least 50 ng/mL, B12 in the upper end of its range, and ferritin should be at least 100.  

You can confirm all this by reading at least the first two pages of the following link, and read more if you want to get into the discussion and scientific evidence for all that is recommended.

http://www.thyroiduk.org/tuk/TUK_PDFs/The%20Diagnosis%20and%20Treatment%20of%20Hypothyroidism%20%20August%202017%20%20Update.pdf

From what you have said it doesn't seem like your doctor is going to be willing to treat clinically, as described.  You might try giving him a copy of the full paper and ask him about clinical treatment as needed to relieve your hypo symptoms.  If he disagrees, then you will need to find a good thyroid doctor that will do so.

By the way, what is your dose of T4?  Also, do you take your med in the morning before the blood draw for thyroid tests?

[Gracevd70]

Hi Gimel
My t4 meds is Synthyroid at 125mcg for almost the entire 11 months, it will be a year in Oct since I had thyroid removed for cancer. Is this crazy neck pain normal or should I be concerned?