Help... starting to freak out!

[getkristan]

I got a blood test 8 days ago that said I had a TSH level of 14...  this was after being misdiagnosed for hypothyroid symptoms for months (swollen glands, achy pelvis, skin inflamations..)   Since I have had thyroid cancer the doctor was very alarmed and instructed me to see an endocrinologist ASAP but didn't change my Thyroxin dosage -- wanting to leave that to the endo (ie passing the buck?)   To be fair... the doctor is at a clinic and not my regular doctor.. I moved to Montreal a year ago and haven't been able to find a family doctor (theres a shortage here)

The soonest I could get an appointment at the endo is next friday (the 13th!)....

But i really feel like I am becoming more and more hypo...!  I start to crash after being awake for 5 hours... I'm cold... getting headachey... tingling limbs... I'm dopey  (it's even hard spelling this message correctly)...  I didn't feel these symptoms a month ago, I'm pretty sure (although I was experiencing those other physical reactions listed above).  I recognize my panic about the test results could lead to imagining symptoms that aren't there, but I'm pretty sure that's not the case... I feel *noticeably* crappier than I did before the test results.  Back then I still thought it was possible I had just an infection of some kind.. I wasn't falling asleep in the middle of the day or shivering in front of the heater.

I take .175mg of thyroxine daily...

I know it's dangerous to be in this state because of my former cancer (total thyroidectomy).. I'm pretty sure my symptoms are increasing (pains in chest/right lung/twichyness/shortness of breath .. these weren't here a month ago!)..

Is there any serious danger in upping my meds and becoming intentionally hyperthyroidic (maybe taking a tiny little extra chunk of pill a day?)... I know it may not feel great, but it's got to be better than this... and its also safer from a cancer recurrance point of view, right?

I just hate feeling that my health is being determined by by doctors schedule books!

I'm a guy.. 36...  

Thanks for your input!  

Kris

[gimel]

Just a couple of thoughts for you.  I don't see any serious danger for you to take a very small increase each day; however, being a T4 med, it will do very little for you in the short time before you see the doctor, so perhaps you should just wait.   With the symptoms you still have, even with taking 175 mcg of thyroxine daily, its possible that you need T3 more than additional T4.  You really won't know this until you see the doctor and get tested.  In my opinion you should insist that they test you for free T3 and free T4, along with TSH.

TSH is inadequate as a diagnostic, by which to determine medication.   TSH is a pituitary hormone that is affected by many variables, including the time of day when blood is drawn.  At best it is only an indicator, to be considered along with the much better indicators which are symptoms and the levels of the actual biologically active thyroid hormones, FT3 and FT4 (not to be confused with total T3 and total T4).  TSH also doesn't correlate very well at all with hypo symptoms.  

FT3 is the most important because it is four times as potent as FT4, plus FT3 correlates  best with hypo symptoms.   Many doctors adhere rigidly to using TSH as the only, or main, test to determine a patient's thyroid status and prescribe meds.  Others do not accept the importance of testing for FT3 and almost refuse to do the testing.  In my opinion the very best way to treat a thyroid patient is to test and adjust FT3 and FT4 with whatever meds are required to alleviate symptoms, without being constrained by TSH levels.  Unfortunately most doctors don't seem to like this approach, and prefer to rely on TSH, leaving many patients with lingering symptoms.

I mention all this because you should not assume that just because you are going to an Endo, that everything will be as you would like.  You may run into some of these difficulties.  If that is the case, at least you will be forewarned and forearmed to discuss and hopefully get what you need.  Otherwise you will still be looking for a good thyroid doctor.

[getkristan]

It seems on the bloodwork that I had done that they did my free T4 and TSH but nothing else...  my TSH was 14 and my free T4 was 14.  I'm sure I'll get the other stuff tested when I see the endo but what do you think of those numbers?

I'm also looking into finding an "integrative medicine" doctor... maybe he will be interested in looking at some alternative scenarios to what the endo will consider.

Over the past week I've really begun to think that my thyroid cancer and thyroid difficulties in general are caused by problems farther "upstream" ... the pituitary gland or hypothalamus... sounds crazy, I know.  I'm just wondering what kind of doctor is going to help me explore that scenario.

[Super_sally888]

Hi,

Waiting a few days until the 13th should not make much difference.  The doctor will definiltely be increasing your meds... though it will take a few weeks, or longer to feel better.

I think that your elevated TSh would indicate that your pituitary and the higher ups are probably working fine.  

Keep it simple.  Don't go looking for other problems unless and until the current one is worked out.

Let us know how you go.

[gimel]

Sally made some good suggestions regarding your pituitary concern.  Stay focused on thyroid until you get that straightened out and then see if there is a need to go further.  With your high TSH level and a FT4 level that I think is probably below midpoint of your lab's range, I expect that your FT3 test would show even lower in its range.  That's something you are going to have to insist on with the Endo, that you want to be tested for FT3 as well as FT4 and TSH.  
Also I think you are going to want to explore with that doctor whether he is willing to treat your symptoms by adjusting the levels of your actual biologically active thyroid hormones (FT3 and FT4), without being constrained by the resultant TSH level.  You will also need to find out if the doctor is willing to prescribe  medications that include T3, if the FT3 is low.  If the answers to these questions are no, then I think that doctor should only be short term, while you find a good thyroid doctor.
This is a good article that might give you some insight into why I believe all this.

http://www.hormonerestoration.com/Thyroid.html