Thyroid levels

scorpio

Hi all,

Has anyone read about the new "normal" guidelines for thyroid? From what I've read the new guidelines moved from 5 down to over 3 as being abnormal

Being a stage 3r, I too had everything but the kitchen sink treatments and now come to find out that it's not only the radiation, but chemo can also mess up the thyroid.

The weight gain is soooo frustrating and  I think a big cause of depression for a lot of patients.

My TSH was 3.96 which is right between the old normal and the new normal, but my doc said at the time that it was normal, but now I'm not so sure. As a long time exerciser and a person who eats pretty well most of the time  , I resent the idea that this weight gain is my fault.I gained the weight right away while on Arimidex, but now I'm on tamoxifen and I can't lose a pound.

Has anyone out there been prescribed thyroid medication and what was your TSH.

Thanks

Scorpio

snowyday

This is so interesting thank your for posting this, I am so flat right now, and gaining weight, I am going to ask for the thyroid tests and thank your for the new numbers on what normal or not.  Maybe there is hope after all. Big hugs, snowy

Trish03

Hi, Scorpio,

Yes, the normal is now 0.3-3.0, as I understand it. The guidelines were changed a few years ago. I actually feel best if my TSH is a little less than 2.0. Everyone is different, and dosage has to be adjusted until you feel better. It can take a while to get it right.

After treatment, my TSH was 47...yes, 47. My dr said that he didn't know how I was walking around. I think that the radiation messed up my thyroid. Prior to bc, I took 50 mcg of Synthroid; now I take 125 mcg.

All the best to you,

Trish

QueenSansaStark

My TSH was 3.5 - borderline hypo - but I also have Hashimoto's (runs in my family) and an icky thing called a "multinodular goiter" (thyroid gets larger and lumpy. Charming!). I'm on 50 mcg of Synthroid and I tell ya, I'm a new woman. Not only am I losing weight and my insulin resistance is gone, my cholesterol is down to normal - no more itchy-as-freakin-HELL dry skin and constipation! No more feeling bleah! Oh, and I snored like a mofo, which was beyond embarrassing  and now I sleep like a baby.

Chemo can do a number on your thyroid or precipitate any tendencies towards Hashimoto's and the like - I probably would have had Hashi's anyway because mom does (and like me, she has ER/PR+++ BC - seven year survivor, go Mom!) but like menopause, it came on earlier because of the chemo.

I tell all my girlfriends to get those thyroid levels checked out. It is VERY common in women and VERY underdiagnosed. And don't let anyone send you home with a handful of anti-depressant meds until they check your thyroid, either. Hypothyroidism can mimic depression.

wishiwere

I had mine checked over the years and it was always normal.  OF course that I'm sure, was against the old numbers.  The day I was dx with B/C I was also dx with hypothyroid at 5.9.  Can't remember what the T4 was at the time, but it is Hashi's.  There is a possibility that the B/C and thyroid problems might have a link of sorts, but nothing definitive is decided yet.

Many think that a TSH level at 1-2 is a good one for making us less symptomatic.  I've had problems and really should see an endo, b/c I think mine running at 0.02 is way too low for me. I have problems keeping weight on now and I think it's the thyroid, but no one agrees.  I'm lethargic and could sleep the hours away if I could. 

Get a referral to an endocrinist (I think they are the ones that treat it) and get some answers.  Many doctors (pcp's) still use the old numbers.

carol1949

Ladies, Unfortunately we are all part of this "club"!!

I have had thyroid problems for years, and the first thing my oncologist said to me was she thought my bc had something to do with my thyroid!  Yes, Scorpio, they changed the numbers at a world wide symposium of endocrinologists a few years back.  They were finding too many people who had thyroid symptoms, but the numbers indicated "normal".  There is a pretty good website called aboutthryoid.com.  When you do some research, I think you will also learn that many health professionals think the blood test is the least accurate way of measure for thyroid function.  (thanks in part to whoever controls synthroid)!

I would encourage all of you to check into lugol's iodine.  You can Google it and even reference a Lugol's iodine/ breast cancer connection.  There are theories that indicate Lugol's iodine can not only regulate or at least help regulate thyroid, and at the same time help eliminate fybrocystic breasts which is considered to be in many cases a precursor to b/c   Years ago, (in the late 60's), my NY dr. treated my thryoid w/ Lugol's and it became normal... and he took me off it.  It remained normal for about 20 more years!

It is definitely thougth that if you don't have thyroid issues prior to bc, you will have it after tx.

I am taking Lugol's with the approval of my oncologist.  Remember, Doctors know in part what the pharaceutical reps tell them!  Be your own advocate!

robinri

Yes I also have thyroid problems that was undiagnosed until I had a CT scan (snooping for mets)that showed up a subsequant finding of a nodule on the thyroid. My ONC was on the ball enough to send me to see an endocrinologist and presto my TSH was 8.16. I am now on thyroid meds so we will see if I feel better. But Its very undiagnosed and untreated. So press on and get those thyroids checked.

Robin

Bee54

Hi everyone, in May 0f 2007, I had a hysterectomy (total, nothing left) then in aug. 2007, they by chance found out that I had thyroid cancer, so they removed it. Thought I was in the clear, until June 2008, abnormal mamo, then more mamos, several ultra sounds, biopsies and 2 lumpectomies, now they say I have DCIS, LCIS and a few others, nothing invasive and want me to have a bi-lateral mx,Feb. 3rd, also SNB. I ask all doctors and they all say none of mine are connected, oh by the way my hsterectomy was done because I was pre-cancous. I just think in the big picture they are all connected some how. I'm not a doctor but this really seems odd to me. Anyone else have anything like this happen? Would love any comments on this. thank you, Bee

turtle42

I am so happy I found this thread. About a year ago I found out I have a 2cmx3cm nodule on the left side of my thyroid, same side as my breast cancer. Had a fine needle aspiration that showed no sign of cancer. I now have to have it checked every 6 months or have it removed. Is it safe to leave a nodule that large in there? Could this be what is causing pressure in my head? Some times the pressure is so bad I feel sick to my stomach. Thanks for any info.

Jackie

kimf

I, too, had thyroid cancer after breast cancer. Actually, my fine needle biopsy of my thyroid nodule came back negative, so I let it go until my treatment for breast cancer was complete. Then I had a thyroidectomy - one goiter and 7 nodules - and the post operative report said the goiter was cancerous. I about fainted. But, after a radioactive iodine treatment following the thyroidectomy, I really don't have anything to worry about. It was contained, it is gone, and it isn't going to come back due to taking Synthroid. So...although it was a shock, it isn't anything like breast cancer...at least mine wasn't. I had papillary carcinoma/follicular variant. A very benign type of thyroid cancer.  I have regular (now annually but used to be semi-annually) appts with an Endocrinologist at my cancer center, take my meds and I'm doing okay with it. I hope the same for you.

Kimf

bluedahlia

Hey there Kimf,

I was diagnosed with the same kind of thyroid cancer and am scheduled to have it removed on Feb. 12th.  Actually went to my pre-op today.  About the radioactive iodine treatment, how long did youhave to stay in isolation and did they let you go home right away?  I think the isolation part scares me more than anything else.

kimf

bluedahlia I pm'd you

footprintsangel

Hi kimf, I have 7 nodes in my thyriod, My father died of thyriod cancer. But as long as they don't look like cancer they won't take them out. (insurance) I am really mad cause the dr told me he didnt think I had breast cancer and I had to fight. I had stage 3 IDC.  I dont understand why they dont take better care and save money too.  Take Care, Debbie

Enelson

Wow. After diagnosis and treatment of breast cancer I had a TSH of about 5.0 and knew about the new guidelines for hypothyroidism. Unfortunately at the time I seemed to be the only one at my hospital that knew this.  I gained 40 lbs in 3 months after chemotherapy while on tamoxifen. Last week I had my TSH checked and it was 49.  I had all the classic symptoms of hypothyroidism such as the weight gain, recurrent sinus infections, brittle nails, headaches, lethargy, etc., but still decided to look for a link to the CA. I am so glad I did. Thank you all for being here ahead of me.