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TSH Levels

Posts: 4
Joined: Mar 2007

I have had a thyroidectomy and RAI treatment and am now trying to get my levels where they need to be. However, I don't know what that is and I feel like my doctors don't know either. I was at .29 at the beginning of May and am now at .04, which I guess is pretty good considering I was at 172.74 in March. I feel really bad and my family doctor thinks I am crazy because my symptoms don't add up. I have severe back pain and can't bend over, really dry skin, diahreaha, and I feel like I am climbing the walls all of the time, like my nerves are shot. I just lay in bed and wait to fall asleep, but during the day I fall asleep too easily and miss important things. I don't know what to do to help myself. My doctors aren't communicating with me. My endo won't return my phone calls and won't see me for four months. I am just wondering if anyone can tell me what is normal. I hate feeling like this. I also don't know how often I am suppose to be seen and If I still need to go to a cancer doctor? Also is it possible that the cancer could have spread to my lung base or liver without going any where else and then the RAI treatment killed it? Any help with any of the topics would be great. Thanks

Rustifox's picture
Posts: 120
Joined: Mar 2005

Our TSH levels ('suppression'=low TSH, to prevent any remaining thyroid or cancer tissues from growing) are normally kept below .50 after thyroid cancer; it depends on the extent of the cancer found during the surgeries and RAI treatments, too though.

If your age is higher, tumour was a larger size, or the pathology on the tumour had more aggressive cell types, then the doctors will want to keep your TSH very low - .01 or almost undetectable. If you are considered 'low risk' for recurrence, then the TSH can be a little higher - up to the .50 range, but normally they do like to keep us below that .50 mark - that is the 'gold standard' for ongoing suppression.

When our TSH is that low, we are technically 'hyperthyroid', without the thyroid being there - if you want to look this up, there are numerous articles online - this is called "Iatrogenic thyrotoxicosis' in medical language - but essentially means hyperthyroidism caused by higher doses of thyroid medication. If you look up hyperthyroidism, you will find some of the symptoms you have mentioned, like diarrhea, anxiety, etc. The dry skin is a delayed result of the hypo state, during your RAI treatment - it takes a few months for the skin and hair dryness to get back to normal.

The edgy feeling from the low TSH is pretty normal, too - some people don't have any trouble with this, but others feel it quite dramatically. If it is important for your TSH to be very low, based on your risk factors (again, age, cell types, size of original tumour) then this can be treated with a low dose of antianxiety/antidepressant style of medications, or even beta blockers. Some will also get heart palpitations from the low TSH, too - a low dose of beta blockers will also help this.

You should keep the appointment with an endo - they are the best doctors to provide ongoing care and check ups for thyroid cancer. It is not unusual for them to want to wait 3-6 months to see you again now, though.

When we have RAI treatment, it takes time for this to go about trying to kill any remaining cells in our bodies. RAI will keep working for 6 months, even up to a year, slowly ablating any remaining thyroid tissues in your body.

On a similar note, when we start a new dose of thyroid hormones, it takes a minimum of 6 to 8 weeks to get completely into our tissues. I know it is hard, because the last thing we want to do is to 'wait' to have all these things happen... but that is likely why your doctors want to wait to see you again, too.

It would be very unusual to have thyroid cancer spread to your liver; if it were in your lungs, it should have shown up when they did the post RAI treatment scan, and would also likely show up from an increase in thyroglobulin in your blood tests. Have you asked for a copy of your reports? You might want to ask the doctors' office to send you a copy of your original surgery report, pathology report, and post RAI treatment scan report, and thyroglobulin levels; I asked for these in writing, and faxed it to my doctor(s) office. It is good to have copies of those files in the long term, and having this information so that you can review it yourself prior to your next appointment might perhaps help set your mind a bit more at ease while you wait for the hormones to reach their maximum effect.

Insomnia with our high dose of hormones isn't unusual, either, which will also affect your energy levels during the day. We do get more 'used' to this as time goes by, but stressing can make it worse, too, so it is helpful to try to keep your stress levels down. Stress releases an extra hormone called 'cortisol', which can make us even more tense. Again, sometimes a low dose of antianxiety type of medications can quickly resolve this - these are good things to discuss with your family doctor, who can help you through this transition time; just explain that you feel too hyper and are not sleeping properly at all at these low TSH levels, but the low TSH is required to help keep any possible remaining thryoid cancer cells from being active.

I know this is frustrating - and the waiting is even more frustrating, but it does take time for both the RAI to do it's job, and the hormones to completely settle back into our bodies. The first 3 to 6 months after RAI treatment are definitely an adjustment period.

Do consider trying lots of natural approaches to get the insomnia under control; perhaps more exercise during the day, milk before bed, all these types of traditional things to expend the extra hyper energy may make a difference. If not, do consider consulting your GP/PCP to get some medication to help you through this.

Your physiological and psychological/emotional state has been through a real trauma in the past few months, and it does take time to recover from it. Extreme hypothyroidism for RAI treatment is a real blow to us, and it can be tough for us to spring back to feeling more normal.

The severe back pain is abnormal. Is this between your shoulder blades, or in your lower back? I did have some burning pain between the shoulder blades after starting the hormones for a few days, but it does normally settle down - but - with that said, our thyroidectomies can 'wrench' our necks and backs. You may find that theraputic massage may be helpful, but check with your family doctor first, and it is best if they stay away from your neck area for the first few months after surgery. A back massage can really help, though; we often get fluid build up and serious muscle tension from holding ourselves erect post-op, so maybe that will relieve the pain, but again, you should talk to your family doctor about this back pain issue, and ask if it could be from the surgery?

I found my family doctor to be my greatest help through all of this. Endos mainly deal with just our thyroid issues; a GP/PCP is responsible for your overall state of wellbeing, so if you can work with him/her, all the better.

Hope some of this helps a little. I'm sorry you are going through this, and know how frustrating this time can be... all the best to you.

Posts: 16
Joined: Jan 2008

Rustifox. I am so impressed with your knowledgable replys to people's questions. It's amazing how well you articulate your responses so that everyone can understand while accentuating the important points. I am new to all this but must say, I'm so happy to have found your reponses. They have helped me tremendously understand this very complex issue.
By the way, are you aware of thyroid stunning issue? My daugthers pretreatment RA123 scan came up areas in neck that needed ablating and next day had RA131 then 7 days later had post scan which had a mysterious uptake. Really no update much at all. Only thing on whole scan was a small area on lower neck which was in the first scan. Other then that there were no other uptakes obvious to docs. They mentioned the possibility of thyroid stunning. I'm clueless as this seems very medical when I research it. Not sure i understand the ramifications for my daugther. Not sure if it affects the outcome of the RA131 treatment. Any feedback would be great. thanks, Dee

Posts: 11
Joined: Apr 2010

Hi I realize you wrote this back in May of 2007, but I am new this whole thing. I was first diagnosed with thyroid cancer in October of 2007 (this after almost dying from a staph B infection in my leg in September of 2007 -- where they cut half the infection out of my leg and then did skin graft surgery). Anyway, for almost four days I was in a coma -- they did not know if I was going to live or die and did expect me back to work for almost 6 months. Well, I was back to work in 2 months. But while in the hospital my calcium tests and other blood work was coming back irregular.

So, they scheduled me for a needle biospy and discovered I had thyroid cancer. So, I had my thyroid removed the week of Thanksgiving. I guess I must have been in a state of shock or just so thankful that I had the infection, because otherwise the cancer would never had been discovered (I am one who never goes to the doctor). Of course, I had everyone telling me that if I was going to have "Cancer" that thyroid cancer is the best kind to have. So, that has been my motto.

Well, three years later the reality of everything is hitting me. I am single, work fulltime and two parttime jobs -- and that is just to make the basic living expenses of rent, utilities, food/medications, gas for the car. I cannot afford to have my body scan this year, I cannot afford to have blood work done and I have already had to cancel two appointments with my endo doctor because I cannot afford to pay him. I have insurance, but it comes with almost a $1,500 deductible. When I had gone back to the surgeon for my follow-up appointment after surgery he told me that for the next five years I would be meeting my deductible then some as I would be having followup visits with the radiologists, body scans, blood work and endo appointments. What he told me never registered with me -- the cost, the treatment, etc (and of course I went to the doctor by myself, even though everyone told me that you should always take someone with you to help listen. I didn't take a family member with me because they "were too busy" and told me that "I was a big girl and knew what I was doing".).

So, here I am three years later, have just dug myself out of debt (have been living with family members for the past year to make this happen) but now have worked up my budget and realize that with what I bring home is only enough money to cover the "basic" living expenses and I cannot have my scan done (have tried to work with the financial department at the hospital and they are not willing to accept the amount I can pay on a monthly basis. I have to pay more, have it paid off in a six month period or they will turn it over to collections). I cannot afford to go to the doctors (which means I don't know if she will continue to give me my prescriptions); I cannot afford blood work, which I know I need to have done.

Worse of all, I have an 83 year old mother living in a house that is paid for and keeps telling me that "well, everyone has it bad. you should be able to make it -- you only have yourself to worry about. you expect everyone to help you out. you don't have a house payment like your siblings (I guess rent doesn't count)." and the best one was "you have no pride in yourself".

I guess I just wanted to vent and you sounded like someone who understands. Right now, I'm feeling tired, whipped, very down, teary eyed and just plain wanting to give up with life. Oh, and of course I have the lovely people who tell me things like "well, thyroid cancer is the best kind of cancer to have" "do you have to have the scans done every year" "why do you have to go back to the doctor's every 3-6 months" "can't she just call a prescription in for you"

Thanks, for listening and if anyone knows of anyplace I can turn to for some financial assistance I would appreciate it.

Posts: 156
Joined: Mar 2010

I know that when I called them they asked if I was having financial or insurance problems.

Posts: 2
Joined: Oct 2010

Hi there. I had two partial thyroidectomies when I was fifteen due to thyroid cancer (I am not 29) and RAI when I was 26. In February my TSH was at 1.57 and this week I found out that it is over 10. I am wondering what could cause that much of a jump. Do you know? Your entries are so well informed that I thought if anyone knew then you would. I am currently in between endocrinologists so am waiting for an appointment with the new one.

Thank you.

Posts: 1
Joined: Jul 2005

I had the same procedure...at this point I'm 9 years clear. My meds are Synthroid at .15mg. I'm first to admit that this experience has changed me forever. I am a totally different person now. None of my symptoms ever added up either. I've never had the back pain...my pain is mostly from sports which I don't play so often because I can't handle the outdoor heat and the sore joints (i'm sure that's partly my age though I'm now 35) My skin was always dry, and I could cry at the drop of a hat. Bad hair day and that would set me off too. Add a little stress and you're looking at a full blown nut case really. Sleep is one thing I don't have any trouble with....there was a time I could sleep 12 or better hours a night. Now is much better....I sleep about 7 or 8 and I think that's more normal anyway. I totally understand what you mean about lack of doctor support. My endo only cares about her med kick backs... certainly not me. As long as she gets the coins that's all she seems to care about. I never had a weight issue either until I became ill. I shared my concerns with my endo but she just says "people like me" need to try harder...not let me hook you up with a nutritionish at the hospital or anything...next patient please...she doesn't give a damn how I feel or how this effected me. I was told there were foods I should stay away from...soy products particaully...but where is that helpful hint from my specialist.....I've been through a few family doctors...finally now I just recently have one I like...I was tired of doctors telling me I needed to be on anti depressants....just cuz I cried all the time didn't mean I was depressed!!! Or just because I wanted to rip my bosses head off and feed it to her most days....didn't make me depressed!!! I did meet a girl at my job who had her thyroid removed (because of grave's disease) different but the same end result. She turned me onto a hormone (natural path type of DR.) and I must admit he is wonderful. Other than my 15 extra pounds my life is back in control. My progestone levels were so low...that I was a case...set me into peri menopasal...not good when you're getting married in a year and want at least 1 child...I can almost say I'm pretty close to back....still abit emotional when I'm stressed out but not near what I use to be. He was the only doctor in those 9 years that didn't say...yep...you're loopy...he took blood tests and said yes you have an issue. That's all I wanted was for someone to reconize that I just wasn't myself.
I still don't like my boss but ripping her head off isn't as pronouned as it used to be...ha..ha.
It may not be for everyone but it helped me. If you know of any good food websites "for people like us"...please share. I've been thinking about joining weight watchers want to badly loose that 15 pounds for my wedding day!!
Take care...just my experience...if you have any other questions...ask

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Posts: 3
Joined: Aug 2014

June 23, 2014 after a MRI of my spine they found over 11 nodules on my thyroid.  So we opted to have the whole thyroid removed rather then testing each one for cancer and glad we did cause it came back all cancerous.  I never found out what level of cancer I had.  I had the Iodine131 pill for my chemo in July, 2014.  Now I've been seeing my endro doctor every two months and she has increased my synthroid from 88 to 136mcg (over a course of less then a year).  Blood work as of June 16, 2015:  TSH - 2.140 uIU/ml, range: 0.450-4.500; T4, Free (Direct) -  1.31 ng/dl range: 0.82-1.77; Trilodothyronine (T3) - 68 ng/dl, range 71-180; Thyroglobulin, Antibody <1.0 IU/ml - range 0.0-0.9; Thyroglobulin, Serum 0.2 - range 1.5-38.5; Vitamin D, 25 Hydroxy 43.9 ng/ml - range 30.-100.0; I don't have the report done in Feb or April but my TSH level in December but different lab so levels are different.... Dec, 09, 2014 TSH 33.69mIU/L range 0.40-4.50;  Sept. 2014 TSH 0.923 uUI/ml range 0.450-4.500.  With new health insurance carrier we will be staying with the same lab.  So the ranges will stay the same.  I just don't know why my TSH level keeps going up.  I take my thyroid at 4:30 AM everyday at the sametime and wait an hour before breakfast or my other 33 pills I take everyday...Think I am scared of it coming back or attacking other things and I just want some energy....its hard for me to stay awake during the day and at bedtime I have no problems going to sleep.  Before this thyroid stuff I had trouble sleeping straight thru the night I get up every two to three hours, if I roll over in bed that wakes me up and that is because of my back.  Then only time I get to sleep straight 8 hours is after surgeries.  I would so love to sleep straight 8-10 hours at least once a week would be nice and yes I have sleeping pills and I still up every two hours.  That makes your nerves raw.  Oh I am taking OTC B12, folate acid and Vit D 5,000 IU and 7,000 in the winter.  My big thing at the moment is ENERGY.  I want my energy back.  Thank you for your time, Debbie Cogsdil, Hockley, Texas.

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