TSH levels and anxiety

hunter1112
hunter1112 Member Posts: 2
in Thyroid Cancer #1
My 20 year old daughter has a TT 6 years ago. Her TSH levels have gone up and down constantly ever since. Her dosage is changing every few months. She has gone from 100 mcg up to 200 mcg and back down to 125 mcg now. Along with this, she has anxiety, palpitations, chest pain, etc. Her Endo keeps her below 0.1, usually closer to 0.05 but I think we can go higher than that. Is it time to get a new doctor? I just think she will feel so much better if she is not so thyrotoxic. Any advice?

Comments

  • nasher
    nasher Member Posts: 505 Member
    #2
    they are always trying to get the right level
    My Thyroid Stimulating Hormone (0.34-4.82) range
    Thyrotropin 0.100 Micro International Units/mL 9 May 2011 200 mcg synthroid 25mcg cytomel
    Thyrotropin 0.040 Micro International Units/mL 18 Apr 2011 200 mcg synthroid 25mcg cytomel
    Thyrotropin 0.310 Micro International Units/mL 18 Jan 2011 250 mcg synthroid
    Thyrotropin 3.120 Micro International Units/mL 29 Nov 2010 200 mcg synthroid
    Thyrotropin 1.780 Micro International Units/mL 03 Sep 2010 150mcg synthroid
    Thyrotropin 95.69 Micro International Units/mL 27 Apr 2010 (preparing for RAI on 5 May 2010)

    The Docs normally like to keep your TSH as low as possible to minimize the chance of any remaining thyroid tissue to grow.

    The symptoms of thyrotoxic are (Wikipedia)
    -------
    Symptoms of chronic TM arise slowly overtime. Patients usually complain of decreased exercise tolerance, increased fatigue, and difficulty completing certain tasks after six months of TM onset (Kazakov, 1991; Quinn, 1951). If chronic TM goes untreated worse symptoms may develop including difficulty swallowing and respiratory distress. These occurrences are rare since diagnosis of chronic TM usually occurs during the early stages of onset prior to these symptoms development.
    -------

    The Docs are trying to keep her in the hyperthyroid range. Remember just cause she has a low TSH level does not mean she has Thyrotoxic myopathy. It is just that they are giving her enough synthroid that the pituitary gland does not need to make any TSH.

    Defiantly a second opinion is called for if you have worries.

    Every case is different do you know what type of thyroid cancer she had, or what staging it was in... or if it had the BRAF mutation?

    Did she get radioactive iodine treatment... are her scans coming up clean?

    The other number you need to be looking at is her Free T4
    Thyroxine Free 1.16 ng/dL (0.59-1.8) 13 May 2011
    Thyroxine Free 1.32 ng/dL (0.59-1.8) 18 Jan 2011
    Thyroxine Free 0.93 ng/dL (0.59-1.8) 29 Nov 2010
    Thyroxine Free 1.30 ng/dL (0.59-1.8) 03 Sep 2010
    Thyroxine Free 0.21 ng/dL (0.59-1.8) 27 Apr 2010 (preparing for RAI on 5 May 2010)

    Thyrotoxic myopathy can happen when your body is producing too many thyroid hormones or too much supplement if her Free T4 is in the normal range she should not fall into the Thyrotoxic myopathy category.

    In a normal person with healthy thyroid the TSH will be in the normal range to keep the T4 in the system in the normal range... BUT... Without a thyroid they suppress the TSH basically ends up being suppressed to make the body have the proper amount of Free T4 in the body.

    you may also want to talk to her and her doctor about trying the synthroid/cytomel combination for me it seems to help with a lot of the problems I was having (except I still can’t lose weight).

    Please ask thousands of more questions the only way we learn is by asking questions that others have not thought of.

    Craig
  • sunnyaz
    sunnyaz Member Posts: 582
    #3
    Hi hunter1112
    Here are a couple of things that can cause TSH levels to vary.

    1. Medication must be taken on an empty stomach with a glass of water. Avoid eating or drinking anything (except water) for at least forty-five minutes (an hour is best) after taking medication, especially dairy products. NO calcium or calcium supplements (such as Tums) during that time. This is very important.
    2. Name brand medication is stable in it's dosing. Generic brands can vary in their dosage. I know this sounds weird but it is true. I work in the medical field and have seen and experienced it many times. You would think that the FDA would be monitoring it more carefully, but they don't. My Endo does not let me take the Generic Thyroid medication. Most other generics are fine.

    If she is already doing these things than it may be time to change Endocrinologists. It is very odd that her doctor would go from 100 mcg's to 200 mcg's and then to 125 mcg's unless her weight changed drastically from one blood test to the next. I would think that he/she would have gone in the middle; say like 150 mcg's depending on her weight and her levels of TSH at the time of the last blood test. The dosage is determined mostly by body weight (and there is a specific formula for this) especially if she had a Total Thyroidectomy. I am about 170 pounds and I take 175 mcg's of Synthroid (name brand). My TSH level has been stable at 0.4 for the last year and a half, and even when I weighed fourteen pounds more. I am being kept hyperthyroid to try to keep the cancer from recurring. This hasn't been a successful venture as of yet. I have had two recurrences because I also have a B-RAF mutation gene.

    I hope this helps a little. I wish your daughter the best in getting this resolved. It is so hard to see our children suffering. It would be so much easier if we could suffer for them. I have a teenage daughter and I fully understand what it's like to worry about them. My daughter has a rare form of Epilepsy.

    Blessings,
    Julie-SunnyAZ

Discussion Boards