my tsh is at 139

[sharone]

I had my thyroid removed in 2001 because of cancer. My levels have been out of range since. Im now on 400 mcg of levothyroxine. The doctors are almost in a panic everytime they get my blood results in. This is the highest it's ever been and I wont be able to see a specialist to explain everything to me for another week. Should I be this worried or is it common for someone to have a level this high? What effects is this having on my organs?

[sharone]

this all started from moving back down here from michigan. It took a month or more to get accepted for my insurance. my doc in michigan had called me in the last refill he could give me when i arrived down here. when i got this new doctor about a month ago (primary care, he has to refer me to a specialist) I told him i had ran out of levothyroxine about 4 days proir to seeing him.when he asked my dosage i told him it was at 300 mcg. he said "are u sure" , "that sounds too high, i dont want u to have a heart attack" and sent me out of the office to get blood work. It took me 2 weeks to get the test ( No ride , no time off work , and no babysitter..i know..no excuse..lol..) I was so mad at him for not believing me.this is my body and ive been batteling this for 7 yrs. i know how im supposed to feel and its hard to find a doctor who treats u as an equal and actually believes that u know what ur talkin about...i just found an endocrineologist about 20 minutes from here and theyre gettin me in on friday. This is the same doctor who gave me a RAI a few yrs back. so hopefully we'll get this under control. It took 6 months while i was pregnant to bring it down from 96 to a 7. that was without RAI. Oh..he increased me to 400mcg now and im a lil freaked out to take that high of a dose. so ive been taking 200 just to get some hormone going until tomorrow when i can get a doctor on the phone..ahhh..too much coffee

[stella5349]

It is better to get blood work done prior to taking any medication. As Utah said - it will not put you at 139 TSH though.

First - being this hypo and for a long time could hurt many organs and other hormones. You could be collecting bad cholestrol - Your heart may be effected - Your liver/pancrea/ kidney can slow normal function. Many thing can happen.

Other female hormones may be working harder to balance your endocrine system. Not to mention - your recurrance of cancer is higher if your TSH is not below 1.

I am not sure what your comfort level is with your doctor - but you either need to tell him Help me get this under control - OR fire him/her and find yourself someone that won't drag their feet.

[utahmomma]

Fasting or not fasting will not affect your TSH level like that.  It took me 4 weeks of the low-iodine diet and being off my meds to get my TSH to 76.

A TSH of that high could be a sign on a cancer recurrence.  Your thyroid needs to be suppressed to below .1

Please, please - find a good thyroid specialist who knows about cancer suppression.


Utahmomma
papillary carcinoma '03
recurrence and RAI '06 and possibly '08

[sharone]

ok..first i was told to fast before the tsh test and then another nurse told me i didnt have to..so which one is it? that would probably cause a high tsh level right? i was the one with the tsh of 139. that couldve been way off from a cup of coffee and an egg? hummm..how much could it have thrown it off then? wow..im hoping it threw it off and the tsh is really down at a 90 or even a 60..its not uncommon for mine to be that high.it was at 96 when i was 3 months pregnant..humm.anyone know..

[utahmomma]

Glad that we can help.  Give that baby huge hugs from the rest of us cancer mommies (whe it gets up - *don't* wake it for us!)  :-)

PM anytime if you want or post away here.  We're all here to get through this cr@p together.

[sharone]

Its been real nice hearing from u all...but I must go to sleep..The teething baby will be up soon and I need to be as chipper as possible ( kinda hard with as tired as I am all the time ) Hey..Im super Mommy though..lol.. You'll be seeing me more often now that I found this group..ttyl..xo..

[utahmomma]

Liz - yes, thyroglobulin is the cancer marker but you must have antibodies for it which makes it a useless test for you.  :-(

sharone   Oh, yeah - the RAI isn't fun and I *do* understand but if you need it, you need it.  Remember, it's only a short time that you won't be able to be with your loved ones but you will add years to your life to enjoy them later.

Utahmomma
papillary carcinoma '03
recurrence and RAI '06 and probably '08
three sisters with papillary carcinoma (one with three recurrences/RAI)

[sharone]

I was afraid you were going to say that. Ive had that therapy twice already and the last time I had it was 3 yrs. ago and I havent been tested since. Im sure he'll order the tests on Friday. Im just not ready to be a walking X-ray again. I live with my 11 month old daughter and I take care of my 74 yr. old grandma. After having the dose I have to stay away from both of them for atleast 3 days, use a seperate bathroom (which we only have one in this house) and be off work for a few days. I just moved down here and I dont have anyone to take my place for a few days..so...im gonna pray that I dont need it.. :)

[sharone]

wow..im glad i found this website..thank u for that link.i duno if reading about this is helping or stressing me out more..lol..but im very thankful to have found some people going through the same thing i am.

[Liz94]

Why do you say if the throglobulin is high then they need RAI immediately? What is thyroglobulin?  Is that what they test to see if the cancer is coming back?  I ask because my doc told me awhile back that one of the blood tests they use to check for cancer recurrance will not work on me because mine will always come back negative because of some kind of antibodies. I didn't know what the heck he was talking about at the time.  I do plan on asking when I go back but I was just curious if the thyroglobulin was the test for cancer cells.

[utahmomma]

Yes, it's radioiodine.  There is a *reason* your TSH is so high and they need to find out why!

[sonny155]

Its here under Most Viewed Health Pages  http://www.medhelp.org/health_pages/Thyroid-Disorders/Thyroid-acronyms/show/51?cid=62

[sharone]

whats RAI? is that the radioiodine?

[utahmomma]

You also need to get your thyroglobulin (Tg) tested ASAP and if it is above about a 2 or 3 they need to get you in for RAI immediately.

[worriedinmd]

139 is NOT common! If you had cancer, your level should be <1. There are others on here who can give you great advice on what to do, but you DEFINITELY want to bring that level down.