Thyroid Test Results Conflict w/ Symptoms

[Sally1234]

Please allow me to give you some background...

I am a 50 year old female who was diagnosed with Tall Cell Papillary Thyroid Cancer in 2000.  At that time my thyroid gland was completely removed along with neighboring lymph nodes.  Two of my parathyroid glands were removed and the other two were presumed to be damaged.  My surgery was followed by a RAI treatment.

Since these procedures I have worked with several endo's who have tried to regulate my thyroid hormone replacement meds.  Unfortunately, throughout the process I have felt very poorly.  I have been researching the various thryoid blood tests, their ranges and the various symptoms that I have been experiencing.  But...things just don't seem to be adding up.  Below, I am going to list my past blood test results and med dosages for reference.  I have been feeling EXTREMELY fatigued, have been suffering from memory loss, feel like I am in a fog most of the time, am having difficulty sleeping, experience severe pain/aching in my legs and sometimes arms and have recently developed a tremor in my arms.  My endo has said that my test results are indicating that I am hyper, yet I feel hypo.  I have been on a range of dosages of levoxyl over the years...at times high and at times low levels of replacement.  I had a RAI full body scan last year and after a clear result, T3 was added to my meds.  I did not notice any significant improvement in symptoms as a result.  I can't help but feel like I need more medicine, but my endo insists that I need less and continues to drop my dosages...any suggestions on what might be going on?  I have also recently seen a neurologist regarding my tremor (endo does not think it is related to thyroid) and he has been unable to find any cause for the tremor, but thought (contrary to my endo's opinion) that it could be low calcium.  Any help would be appreciated.

06/2001 - 150 mcg Levoxyl, Calcium 7.0, TSH .03, Free T4 1.28, Free T3 ???
11/2001 - 150 mcg Levoxyl, Calcium  ??, TSH  ??, Free T4 1.44, Free T3 3.50
03/2002 - 150 mcg Levoxyl, Calcium 8.3, TSH .03, Free T4 1.69, Free T3 3.20
07/2002 - 175 mcg Levoxyl, Calcium 8.5, TSH .01, Free T4 1.96, Free T3 2.90
12/2002 - 175 mcg Levoxyl, Calcium 8.3, TSH .13, Free T4 1.62, Free T3 ???
05/2003 - 175 mcg Levoxyl, Calcium 8.5, TSH .37, Free T4 1.34, Free T3 ???
12/2003 - 200 mcg Levoxyl, Calcium 7.7, TSH .41, Free T4 1.58, Free T3 ???
06/2004 - 200 mcg Levoxyl, Calcium 8.1, TSH .32, Free T4 1.50, Free T3 ???
07/2004 - 250 mcg Levoxyl, Calcium  ??, TSH .03, Free T4 2.27, Free T3 ???
12/2004 - 250 mcg Levoxyl, Calcium 8.3, TSH .03, Free T4 2.06, Free T3 ???
01/2005 - 212 mcg Levoxyl, Calcium 8.8, TSH .03, Free T4 1.81, Free T3 ???
04/2005 - 200 mcg Levoxyl, Calcium 9.0, TSH .03, Free T4 1.20, Free T3 ???
05/2005 - 200 mcg Levoxyl, Calcium 8.4, TSH .06, Free T4 1.27, Free T3 ???
09/2005 - 200 mcg Levoxyl, Calcium 9.0, TSH .03, Free T4 1.50, Free T3 ???
11/2005 - 175 mcg Levoxyl, Calcium 8.5, TSH .55, Free T4 1.19, Free T3 ???
03/2006 - 175 mcg Levoxyl, Calcium 8.5, TSH .05, Free T4 1.64, Free T3 ???
06/2006 - 162.5 mcg Levoxyl, Calcium 8.4, TSH .02, Free T4 1.93, Free T3 ???
08/2006 - 150 mcg Levoxyl, Calcium 9.0, TSH .01, Free T4 1.70, Free T3 ???
09/2006 - 125 mcg Levoxyl, Calcium 8.3, TSH ..04, Free T4 1.31, Free T3 2.87
12/2006 - 112 mcg Lev/50 mcg Cytomel, Cal 8.2, TSH .02, F T4 1.42, F T3 ???
03/2007 - 112 mcg Lev/50 mcg Cytomel, Cal 8.5, TSH .01, F T4 1.04, F T3 ???
04/2007 - 112 mcg Lev/50 mcg Cytomel, Cal 8.5, TSH .01, F T4 .88, F T3 3.5
05/2007 -   75 mcg Lev/50 mcg Cytomel, Cal 8.8, TSH .01, F T4 .75, F T3 ???
06/2007 -   75 mcg Lev/25 mcg Cytomel, Cal 9.4, TSH .02, F T4 .86, F T3 3.92
Current Dose...75 mcg Levoxyl/12.5 Cytomel

Over the past couple years I have also been taking large doses of Calcium and Rocatrol.  In 2005 I was prescribed Prozac (40 mg) for depression and that was increased earlier this year to (60 mg).  Last month my doctor suggested I reduce it to 20 mg to see if it had any affect on the tremor symptoms.  In May, I also began taking Requip for my leg discomfort, in the hope that it would allow me to get more sleep.  This was after the tremor started.  I have been prescribed and over the past month or so tried taking Lunesta at night, to  help me sleep, but have not found it to be effective either.

At this point, I have no idea what is causing my symptoms.  I don't know if it is my meds or another problem.  I have had my cortisol levels checked twice and they came back normal.  Please...any suggestions you have will be greatly appreciated!

[GravesLady]

3000 calcium, 1500 magnesium, 2500 V-D (with 25,000 V-A) or there abouts, and 3300 Potassium.  V-A and D, I take in the AM with breakfast and a little fats because they are fat soluble.  The rest I spread out and take with other meals. Calcium 6 hours from thyroid meds.

Age does have something to do with not requiring as much T-4, however, I think the age pertains to 70s plus, maybe 60s plus.

Your levels didn't change all that much and I don't understand why the need for all the med dose changes. It's normal for levels to fluctuate even throughout the day let alone between testing, as long as its within Labs reference range or pretty close to your set goal.  My TSH fluctuates a difference of 5.85 which is a swing larger than my Labs reference range.  So, after 11 years I am still dealing with unstable TSH.  Just haven't found the middle ground to the TSH level yet, that when swinging, will swing within Labs reference range in both direction.  But I will find it, I think I am getting close.  It might take alternating med. doses from day to day.

I don't think you gave most of your med. dose changes a chance to work. With that, TSH is probably confuesed as which  level it should be.  ;) ;) ;)

I hope you have better luck, therefore better health.

jo

[Sally1234]

One other thing that I have found very perplexing is how my TSH is lower now than it was in 2002, 2003, 2004 when I was on higher doses of T4.  Do needs decrease with age?  Are there other factors that cause the dosage requirements to decrease?  The only time I can ever recall feeling good was when I was on the 250 dose and my endo insisted that it was far too high of a dose and has been decreasing me ever since.

[Sally1234]

Thank you for your comments.  I am curious about your suggestions for muscle cramping.  What doses of calcium, magnesium, D and Potassium do you take and what/how does the bar of soap help?  At this point, I will try anything.

[GravesLady]

I think your difficulty sleeping is due low TSH. However, as a former cancer, you might need  TSH suppression.  Your fatigued, memory loss (which does come with age anyway), and fog COULD be related to your sleep issue. (?) When my TSH gets low I have sleep issues to where I take prescribed sleeping on an as need bases.  
Hypo and hyper share some of the same symptoms which can be a fooler as far as making us think we are either hyper or hypo when we are actually not.
Severe pain/aching in  legs and arm with tremor sounds non-thyroid. I don't know if this would be the same as you are going through, but I get severe debilitating muscle cramps (interferes with summer sports activities), so what I do is, I take high does of calcium (plus I am at that age), magnesium, V-D and potassium, plus put a bar of wrapped soap under my bottom sheet.

Sorry that I can't give you any solutions.  However, most of us do share most of your symptoms.  

Good Luck!

GL

[SVETA]

I have almost the same symtoms. All doctors saing it is because a low TSH level- 0.02 like yours. My leg pain is dryving me crazy. My family doctor said i have to decrese Syntroid, but my endo does not want to do it... I hope you feel better,because i am not.
PS I am 34 years od femail, 7 month after tt and RAI due to thyroid cancer .I am on 137 mcg Syntroid
What do you take for the leg pain? Does it help?