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Chronic fatigue and pain following thyroidectomy for thyroid cancer

Hello,

I wasn't sure who else to ask, so I thought maybe the internet could help me. I'm a 27 year old female suffering from chronic pain and fatigue following a total thyroidectomy in 2011 for stage 1 papillary thyroid cancer.

I've seen a lot of doctors for this problem, including endocrinologists, rheumatologists, neurologists, psychiatrists, integrative medicine doctors, osteopaths, physical therapists and chiropractors. None of them have ever really had an answer for me. All I know for sure is that I never had these problems before my thyroid was removed.

My blood tests are immaculate--I've checked my vitamin levels, DHEA, cortisol, dihydrotestosterone, and basic metabolic panels, in addition to every thyroid test imaginable, including free and total T3 and T4, reverse T3, thyroglobulin, and TSH. I’ve tested negative for lupus, hepatitis, lime disease, Epstein-Barr, and multiple forms of arthritis.

I switched to nature-throid (desiccated pig thyroid) about 2 years ago because I thought it could help me. To be honest, it hasn’t made me feel any better but I have no intention to switch back to Synthroid. I take 3 grams daily. I’ve taken cytomel before but it made no difference.

I’m insensitive to most of the medications I’ve tried—antidepressants, muscle relaxants, nervous system meds, rheumatological meds, sedatives and medicinal marijuana.

Here’s a list of my most recent thyroid tests:
Free T3: 360 pg/dL
Total T3: 144 ng/dL
Reverse T3: 15 ng/dL
Free T4: 0.8 ng/dL
Total T4: 7.8 ug/dL
TSH: 0.01 uIU/ML

Every now and then, my doctors have raised and lowered my thyroid meds to see if it could alleviate my symptoms, but my symptoms have never changed. I’ve been tired and in pain for such a long time now; I can barely work and I don’t have much of a life.

Any advice would be greatly appreciated.
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Avatar universal
crf.  What was the actual result of your cortisol test?  Also, do you have any symptoms other than pain and fatigue?  Have you been tested for ferritin?  If so, please post the result.  

Your test results may look okay compared to reference ranges; however, In the words of an excellent thyroid doctor, "in tests done about 24 to 28 hrs after their last daily dose, most people on adequate NDT therapy have a suppressed TSH. They usually have FT4 levels that
are 1 to 1.3ng/dL, and free T3 levels that are rather high in the range or even slightly above the range. The higher FT3 level compensates for the lower FT4 levels on NDT. These patients have no symptoms or signs of hyperthyroidism--if such occur the dose is reduced."  He also says, "In the best tradition of clinical medicine, a physician should prescribe thyroid hormones as needed to eliminate the symptoms and signs of hypothyroidism without producing any symptoms or signs of thyroid hormone excess."

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Avatar universal
I had my thyroid removed 30:years ago. I was doing well until I was switched from synthroid to levothyroxine 5 yrs ago. Not realizing it was the med, I saw the list of doctors you have. Diagnosed w depression, fibro. Chronic fatigue and all the same tests you have had. I always left Dr feeling defeated.
Did my own research and went back to Endo. Found out some if the thyroid meds have opposite effect in some ppl. She added cytomel..No change. Changed to Tirosint..No change. Then Armour and I was so excited. It made me worse  after the first month. Now starting synthroid 200 mcg tomo. I am so hoping this takes away all the pain, fatigue, moods, and 60 lbs I gained on levothyroxine. Can't get the last 5 years back tho :(
Prob not much of a help just wanted you to know you're not alone.
Helpful - 0
1 Comments
Synthetic T4 meds are basically the same except for fillers/dyes used to manufacture the tablets.  Armour is different in that it has both T4 and T3.  

Most likely your problem is related to inadequate medication, poor conversion or T4 to T3, and/or other variables that affect tissue thyroid levels and effects, rather than the med itself.  If I were going to try and assess your thyroid status, I would start with testing for Free T4, Free T3, Reverse T3, cortisol, Vitamin D, B12 and ferritin.  If you have been tested for those, please post typical results and reference ranges shown on the lab report.  
649848 tn?1534633700
COMMUNITY LEADER
Could you please post the reference ranges for the lab test listed above?  Ranges vary from lab to lab and have to come from your own reports.  

Just because levels are "in range" doesn't mean they are immaculate or even adequate for you.  One thing that stands out, is that it appears as though your Free T4 might be very low in the range, which could leave you with hypo symptoms.  

You said you're taking 3 "grams" of NatureThroid... do you mean grains?  That would be 195 mg, since 1 grain is = 65 mg.

Do you take the entire dosage all at once or do you split it into more than one dosage throughout the day?

What time of day did you have the above blood test done and had you taken your dosage prior to the blood draw?  

Have you had any vitamin/mineral testing done?  Vitamins/minerals in question could be B-12, vitamin D, ferritin, magnesium, etc.  If you've had any of these tested, please post results, with reference ranges.  
Helpful - 0
2 Comments
Thanks for your response. The Nature Throid comes in tablet form, and the bottle just says "Take 3 1gr tablets daily". I take all my medication around 12-1pm, usually on an empty stomach. All the blood tests were done at 12:30pm, before I had taken any of my medication. I had my Vitamin D levels taken at the same time, which was 33 ng/mL, with the reference range at 32 - 80 ng/mL. I'm currently taking 50,000 units of vitamin D in pill form once per week.
Also, the reference ranges were as follows:

Free T3: 200 - 440 pg/dL
Total T3: 76-181 ng/dL
Reverse T3: 8-25 ng/dL
Free T4: 0.7-1.5 ng/dL
Total T4: 4.5 - 11.7 ug/dL
TSH: 0.40-4.00 uIU/ML

Also, the Total T3, Reverse T3, Free T4, and TSH were taken at 4:30, before I had taken my medication. The rest were taken at 12:30, also before medication.
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