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Trouble with meds

ca0613
Posts: 4
Joined: Mar 2004

I was diagnosed with papillary carcinoma with follicular variant in Feb. 2004 followed by 150mci I-131 in April 2004. I had my 1st yearly whole body scan in March. Prior to the scan (January) my Free T4 levels had increased from 1.2 to 1.8. My doctor said that after my scan I would go from .175 synthroid to .150. I was a little concerned because the levels had been decreasing, so I wasn't sure what made them increase. Well, it is now 2 months post-scan and I'm still very tired and have gained about 10 pounds. I asked to be re-tested this week and my Free T4 is now .6 - but the nurse said he wasn't going to change my meds because this was within the normal range. Would a decrease from .175 to .150 Synthroid make that much difference? Should I make an appointment to see my doctor? My next appointment isn't until July, but I'm not sure I can wait that long. Any advice would be appreciated. Thank you.

Rustifox's picture
Rustifox
Posts: 131
Joined: Mar 2005

DEFINITELY make an appointment to see your doctor! This can be a serious concern for you!

First, for us - the key number here is NOT your T4; it is TSH. Your TSH should be in the range of .10 - and no higher than .50, unless you have other serious health concerns. This is called suppression - which is often the norm for thyroid cancer patients.

If your thyroid cancer was low risk, they will normally keep the TSH level slightly higher - again, in the .50 range... but if your cancer was higher risk, based on the size, your age, or other similar factors including the aggressiveness of the cell types found (or spread to lymph nodes, etc) then your TSH should NOT be over .10 - in some of us, it needs to be undetectable, so in the .01 range.

Normal range for TSH for people without thyroid cancer is .50 to 4.50, give or take a bit on the lab reference ranges.

This is an important part of your thyroid cancer treatment, and needs to be managed correctly. The T4 number simply tells them you have been taking your hormones - this should be in the high range, definitely, if your TSH is suppressed the way it should be.

This site provides more detail about this:
http://jcem.endojournals.org/cgi/content/abstract/84/12/4549
As does this one:
http://jcem.endojournals.org/cgi/reprint/81/12/4318

If you put 'thyroid carcinoma suppression' in any search engine, you will see thousands of documents about this issue. You need a TSH measurement immediately, and it is likely far too high, if your T4 level is so low. T4 doesn't tell us much, as we take this artificially - if you take your thyroid hormone on the morning of a blood draw, it can increase your T4 number for the next 9 hours, just from absorbing your hormones.

The reason TSH levels need to be so low is that this is a source of 'food' for thyroid tissues, in our case that means thyroid cancer - to grow. Not good... see a doctor right away, find out your TSH level (it should be back within a day or two), and you will likely have to increase your hormones. Please make certain you are seeing someone who is experienced in thyroid cancer issues:

http://www.thyroid-cancer.net/resources/findaspec.php3

It sounds as though you are being treated for thyroid autoimmune disorders, rather than being treated for thyroid cancer... you are likely very hypo, and no wonder you feel terrible. Please get in to see the doctor right away. It sounds like someone is mismanaging your hormones... do not wait to July, and if you don't get satisfactory answers that match the ones in the papers above, I would consider finding a new doctor, pronto. There are a bunch more helpful links on my personal web page here; look to the left of this page, and you'll see a link for all the members personal webpages - search under my member name, and you'll find it.

gacbacker
Posts: 14
Joined: Sep 2002

I replied to your posting...sent an email to your mailbox. Take care.

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