Post Surgerical TSH Levels

[SStewart]

Hello Everyone,

Thank you in advance for your time when reading my story.

I am a 28-year old female, who just had a baby in August.  I was diagnosed with thyroid cancer in 1994 at the age of 14 (papillary carcinoma).  I had both my thyroid and parathyroid surgically removed in October of '94.  Post surgery, it was discovered that my cancer had metastasized to my lungs, and I underwent a series of radioactive iodine treatments.  After 5 clean years of scans, I was pronounced cured, and sent on my way with strict instructions to take my medication and come back every 6-months for follow-up testing.

I am currently taking 175mcg of Levoxyl, 800mg of calcium, a multivitamin, and birth control.  The last few months I have been feeling progressively worse.  I get in between 7-8 hours of sleep every night, and still can hardly drag myself out of bed in the morning.  I'm so tired I can't enjoy what little time I get to spend with my husband and my new son (we both work full-time, and the baby is in daycare during the day).  My marriage is beginning to suffer.  I have never been a skinny person, but I have begun watching my diet closely and get a decent amount of exercise (in addition to being on my feet all day at work - I walk around 2 miles a day at work alone), but not only can't lose weight, I just keep gaining it.  I'm more moody with each passing day (and I've never been a moody person) and just don't like the person I'm becoming.

For the last 15 years, I've been listening to doctors tell me that I don't have a thyroid, and I'm bound to get tired and have a hard time losing weight.  Now it's, "You have a new baby and you work full-time, of course you're tired."  But, he's been sleeping 10 hours a night for the last three months (we're really lucky) - it's not as if I'm not getting enough sleep!

I finally had enough, and went back to see the doctor (GP, I'm not currently seeing an Endo) on Friday and had some blood work done.  She only tested my TSH levels, and they came back at 4.24.  She said this was normal, and to keep taking the same dose of medicine.  She also wants to put me on anti-depressants, but I don't think I'm depressed.  I'm just tired!!!!

My question is regarding the TSH level.  Is this really normal?  I'm getting conflicting info from the web, and am wondering what is truly normal.  Shouldn't she have checked my T3 and T4 (taking into account my complaints) instead of just my TSH level?  Is it possible that I am not receiving an adequate amount of medication, even though my TSH level is "normal"?  What is everyone's position on Armour Thyroid (and/or other natural hormones)?  How do I go about finding a doctor who will listen to me, and help me start feeling better ASAP?

I don't know how much longer I can keep doing this.  There has got to be a better quality of life...there has got to be something more than merely existing.  I have so much to appreciate and look forward to...I just need to find the energy to do it.

Any and all answer/opinions you can offer are greatly appreciated.  And again, thanks for listening.

[jax190]

thanks for the advice  i will try that. its seems to me doctors in the uk dont know an awful lot about thyroid disorders and fob you off they never test for t3 as a rule and im begining to think i will have to go private
thanks jackie

[redhed87]

YOur tsh should be supressed.  I am a cancer survivor as well and mine is .011  You are at a high risk for recurrence, I can't believe they wouldn't supress you.

[SusanneKonig]

Find yourself a better doctor !
You find lots of ways for finding someone competent on
http://www.geocities.com/thyroide

[jax190]

hi just to let you know your not going mad i feel exactly the same i had my whole thyroid removed aug 06 and they found some cancer my specialist said that i had to be on a supressive dose of under0.5 i am now on 150 thyroxine but only get my t4 and tsh levels monitored i too spend all of my time tired and miserable and feel that no one is listening to me after seeing an endo he told me he didnt belive in t3 medication and refused to test me so what are people meant to do when no one listens

[KJ5854]

That's excellent advise utahmomma gave you.  She is correct that the TSH level that thyroid cancer survivors should have is .1.  My endo actually wants to see mine at .4,
but either way 4.24 is dangerously high.  I totally agree with everything utahmomma told you.  Most importantly you need to get into an endo who specializes in thyroids so that you can be properly treated.

kj5854, papilliary cancer '08

[utahmomma]

A TSH level of 4.24 is *NOT* normal for a thyroid cancer survivor.  Your TSH must be suppressed below .1 to prevent recurrence.  Did your doctor also check your thyroglobulin (Tg) levels?  If not insist that it be done *now*.  The way that my cancer recurrence was found was because my TSH was climbing and my Tg was climbing despite being on stable doses of Synthroid.

You may be suffering from more than hypothyroidism (which is it if you've had thyroid cancer) - you may also have postpartum depression.   Two major signs of depression are sleeping a lot but feeling exhausted and moodiness.

I would run, not walk, to find a good endo who specializes in thyroids.  You aren't getting the treatment you need.

Utahmomma
papillary carcinoma '03
RAI for recurrence '06