Had Thyroidectomy 5 months ago have Questions

[Gracevd70]

Since I had my thyroid removed 5 months ago for pap cancer Its been a tough road and I need some help with my current blood test and questions with current issues I'm having. Hope someone with good understanding can assist me (my endo) is no help.

Current blood test (taken 2 weeks ago)
TSH : 0.663 (lab range) 0.27 - 4.20
FT4: 1.77 (ranges) 0.93 -1.7

Medication: Synthroid (125mcg) 7 days a week plus (50mcg) Only Sundays

Current on going Concerns:

1. Sweating off and on and Cold off and on
2. Insomnia off and on
3. Burning skin sensation off and on
4. Weight gain (physically active and follow calorie counting) seeing nutritionalist(says diet and exercise good) slowly gaining weight.
5. Hair breaking and toe nails split down center of nail (this nail thing not constant)
6. Cholesterol level on the rise 10 pt. Increase since surgery (not sure if related)
7. Horrible body pains mostly feet,neck and hip.
8. Water Retention in lower limbs...is horrible. I feel like im water logged.

Is this all normal and will it subside ? Am I hyper or hypo or just right ?  I feel lost with this and my Endo is useless.

Thanks for your help in advance.

[gimel]

The higher dose of T4 seemed to help you, so why is the Endo trying to reduce the dosage?   However, I don't think it is a good idea to push your Free T4 level that high, and assume that your Free T3 level will be okay.  Barb and I have agreed in our posts that your T4 dose should be reduced, but only if adding T3 to your med.  And to do that you need to also get tested for Free T3 and Reverse T3.  Also important to test for Vitamin D, B12 and ferriitin and supplement as suggested above.

[Gracevd70]

My Endo said NO to testing T3 or adding Cytomel. He stated my symptoms are not related to my  Thyroid.

I did put my foot down demanded a second opinion that my current issues were not present prior to my Thyroidectomy and this leaves me to feel its Sx/medication related and your not listening to me.  

Endo wants me to reduce my Sat and Sunday pill to 112mcg. I was on this dose prior to the 125mcg and I felt horrible with awful sweating all day and night long I would be soaked in sweat and in constant pain. Im just going to remove the EXTRA 50mcg on Sunday and continue with the 125mcg at least I wont be wet from sweat all day long and see where this takes my body.

Im under so much unnecessary stress I don't know how much more my body can take.

[gimel]

Sorry, I just realized that I misread the 50 mcg on Sundays as T3, instead of T4.  So that is even more reason to reduce your Free T4, test Free T3 and Reverse T3, and add T3 to your med as necessary to raise your Free T3 level into the upper third of the range.  

[Gracevd70]

My doctor called me left message told me to continue my current dosage of synthroid and now I have to call him again..I wish I never had my thyroid removed cancer or not disaster.

[Gracevd70]

My Endo now wants to reduce my weekend dose from 125 on Sat to 112 and 175 Sun to 112...Im not going to do that 112mcg was a nightmare for me I never sweat so much in my entire life as I did on 112 and I had him put me in for second opinion. Im done with him hes horrible.

[gimel]

In my opinion your Free T4 does not need to be that high.  The first thing you need to do is to get your Free T3 and Reverse T3 tested, along with cortisol.  Then you would most likely do better by reducing your Free T4 med dosage by about 25 mcg and taking enough T3 med daily to raise your Free T3 into the upper 1/3 of its range, and adjusted from there to relieve hypo symptoms.  

The effect of T3 med peaks in  3-4 hours and then it diminishes from there.  So taking the 50 mcg on Sunday  means you only get the effect (of that large dose) on Sunday.  After testing for the Free T3 and Reverse T3 and cortisol, you should ask to take 10 mcg of T3 daily, and then re-test after 3-4 weeks.  Since the doctor seems to be trying to suppress your TSH, make him aware that in addition to helping your symptoms, the T3 med will suppress your TSH even more effectively than T4.  

Further, hypo patients are frequently too low in the ranges for Vitamin D, B12 and ferriitn.  So you need to get the doctor to test those and then supplement as needed to optimize.  D should be at least 50, B12 in the upper end of its range, and ferritin should be at least 70, and some sources say 100.  All three are very important for you.

If you want to confirm what I say, have a look at 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.   Recommendation 12, on page 14 provides info on Vitamin D, B12 and ferritin.

http://www.thyroiduk.org.uk/tuk/TUK_PDFs/diagnosis_and_treatment_of_hypothyroidism_issue_1.pdf

[gimel]

If I understand correctly that in addition to the 125 mcg of T4, your doctor has prescribed 50 mcg of T3 on Sundays only, without even testing for T3, either Total T3 or Free T3, then you should run, not walk away from that doctor.  And if you need names of thyroid doctors recommended by other thyroid patients, just tell us your location and perhaps we can suggest some.

[Gracevd70]

He tested me Dec 2016 and at that time I was on 112mcg and I was sweating non-stop and unable to sleep because of it as well as horrible feet pains at times unable to walk and Wt increased and fluid retention. He put me on 125mcg because the Dec test came back FT4 1.63 and TSH 4.75 and about 2 weeks later he added the 50mcg ONLY on Sunday with the 125mcg.  When I take these 2 pills I have a lot less pain in feet and NO he did not tested my FT3 or suggest it and he says I dont need any further scans to make sure my cancer hasnt grown back. This worries me because of my faulty immune system.

Let me add this could be important I suffer autoimmune disease where my immune system thinks its under constant attack and Im currently taking Otezla to relax my immune system.

[Gracevd70]

Thank you for helping me. My Doctor has not called me yet  over 2weeks since blood test and Im losing patients. Should I be testing everytime for Free T3 as well as Free T4 and the TSH and if it shows my Free T3 is wrong then what happens?

[Barb135]

First off, your Free T4 is at the top of its range, which is higher than it needs to be, since it's recommended that Free T4 be maintained at about mid range; however, apparently, your doctor is not testing Free T3, which is the hormone that's used by all of the individual cells in your body.  It's a pretty good bet that your Free T3 is way too low, which is keeping you somewhat hypo.  

In addition, it's typical to maintain suppressed TSH following thyroid cancer, so I'd think your doctor should be able to see that something isn't right...

Talk to your doctor about testing Free T3, along with the Free T4 and TSH; if s/he refuses, then find a different doctor, as this one will surely keep you ill.