T3, T4, TSH and Thyroid Cancer: What you REALLY need to know
by thycarant
Let me preface this post by clearly stating, I am not a medical doctor. I am simply a thyroid cancer survivor, well-read and well-informed. Always consult your physician about any medical information you have come across.
I’m going to try to keep this info simple. If you have any questions about what I have posted, please, leave a comment. I will try to address it.
What the thyroid does: it produces the hormones T3 & T4.
What happens when you remove the thryoid: you need to replace the T4 hormone.
Why not replace the T3 hormone: your body will convert T4 to T3.
What is TSH: Thyroid Stimulating Hormone.
Why is TSH important: in papillary and follicular thyroid cancers, TSH suppression (below 0.5 for the first few years, at least) is an integral part of preventing thyroid cancer recurrence.
I keep reading that I should only focus on the T3 and T4 levels to decide if I am hypo or hyper thyroid: that is incorrect. You no longer have a thyroid, you are fully dependent on an oral T4 pill. If you do not take your T4 pill your body has no way to produce T4 (or T3). You do not have a thyroid, so you do not have a malfunctioning thyroid. You are not hyper or hypo thyroid if you are taking your pill, daily. You should ALWAYS focus on your TSH, that is the integral part of your thyroid cancer management, for the rest of your life.
But I have symptoms: your dose can be too high or too low and there are symptoms that go along with that.
But everything online says I will only feel good if I take a T3 or take a ‘natural’ thyroid pill with both T3 & T4: if you truly are not feeling good, ask your doctor to try a different brand or type of thyroid med. ‘Natural’ thyroid is derived from pig. It contains T4 and T3, but the ratios are not same as the human thyroid produces. Some swear by it. The vast MAJORITY of thyroid cancer patients feel perfectly fine on synthetic T4 (levothyroxine sodium) and before buying the online bullshit about needing T3, try the T4 for yourself and give it time (at least a year).
But I keep reading that my T3 & T4 levels need to be in the ‘upper range’ and if they’re not, I’m going to be hypo, even if my TSH is 0.0001: first, that’s a pile of rubbish based on zero medical studies. Second, these ranges for T3 & T4 are used IN CONJUNCTION with TSH to diagnosis hyperthyroid or hypothyroid: both diseases of the thyroid (which you no longer have). You do not have a malfunctioning thyroid, T3 & T4 measures are going to tell you very, very little.
But there are people online, authors, etc. who INSIST that T4 only is not good enough. There is one website telling me I need to stop the madness: these ‘authors’ are targeting people who think they have hyperthyroid or hypothyroid, not people with thyroid cancer. As far as I can tell, these ‘authors’ don’t know shit about managing thyroid cancer and want to lump symptoms of a dose too high or too low into hyper or hypo thyroid. It Is Not The Same.
Maybe I’m a ‘poor converter’: yes, I have read about the ‘poor converter’ of T4 to T3 in many online forums. But where I have not read about this condition is in medical studies. It’s not real. Hey, if you feel better taking a T3, then more power to you, but being a ‘poor converter’ of T4 to T3 is not medically real. It’s not, at least from what I’ve read. If you know of studies supporting ‘poor T4 to T3 conversion’, please feel free to share it.
I hear I need to eat more selenium to make sure I am converting T4 to T3: selenium deficiency in the US (and developed nations) is RARE!
“Human selenium deficiency is rare in the United States but is seen in other countries, most notably China, where soil concentration of selenium is low”
http://ods.od.nih.gov/factsheets/Selenium-HealthProfessional/
The bottom line: monitor your TSH. if you have symptoms of a dose too high (ex: anxiety, fatigue, insomnia) or a dose too low (ex: fatigue, depression, impaired memory) contact your doctor. TRUST your doctor when (s)he tells you that Free T3 is meaningless to thyroid cancer management (you do not have a malfunctioning thyroid). Your TSH HAS to be at or below 0.5 (at least for the first few years) and within that range, there should be a perfectly comfortable TSH level where you can reside.
If you really can not tolerate a TSH level below 0.5, you’ll need to ask yourself what is more important in life. Maybe you’ll need to let your TSH rise to 1.00 to feel right. Work with your doctor and ask your doctor about the disease of hyperthyroid, the disease of hypothyroid, and if you could possibly have either without a thyroid.
i hate thyroid cancer 
Thank you, I was confused on the t3 issue. I feel terrific at .4 on t4 only, and was wondering what all this was about.
Glad you found the info useful 🙂
“Sxyvirgo” you have been blacklisted and reported as SPAM! In addition to all of the SPAM that follows you.
Firstly I am new to understanding my T levels. I don’t think someone just invented this ‘lie’ about t4 not converting to t3. I would quicker doubt the medical ‘professionals’. I have high t4levels and my tsh is 0.54. Apparently this is low enough to avoid cancer recurrence. but I still have to live daily with symptoms that I’m getting from either too high t4 or too low tsh. I won’t accept what my doc says until I feel better. I wouldn’t believe half the doctors out there to be honest. At the end of the day, my levels tick the boxes in the doctors office, but they do not work for me. I will continue researching and changing doctors until someone takes it seriously. Trying to find a thyroid specialist in my country is impossible so I will travel if need be. I hope people don’t give up after reading this post as its just one persons opinion. We know our bodies and I bet there’s room for adjustment to make us feel better. I am determined to get my t3 tested even for my own peace of mind.
Firstly I am new to understanding my T levels. I don’t think someone just invented this ‘lie’ about t4 not converting to t3. I would quicker doubt the medical ‘professionals’. I have high t4levels and my tsh is 0.54. Apparently this is low enough to avoid cancer recurrence. but I still have to live daily with symptoms that I’m getting from either too high t4 or too low tsh. I won’t accept what my doc says until I feel better. I wouldn’t believe half the doctors out there to be honest. At the end of the day, my levels tick the boxes in the doctors office, but they do not work for me. I will continue researching and changing doctors until someone takes it seriously. Trying to find a thyroid specialist in my country is impossible so I will travel if need be. I hope people don’t give up after reading this post as its just one persons opinion. We know our bodies and I bet there’s room for adjustment to make us feel better. I am determined to get my t3 tested even for my own peace of mind.
You obviously have zero idea about TSH and T3/T4 levels. You can’t change one without changing the others. Free T3 is ONLY useful to test thyroid function. If you don’t have a thyroid, you DO NOT have thyroid function.
If you HAVE a thyroid, then my original post does NOT apply to you.
TSH should be suppressed at or below 0.5 for the initial years of thyroid cancer management. TSH, Free T3, and Free T4 are connected on a negative feedback loop. You can’t change one without changing the other.
T4 HAS to convert to T3, that’s just the way it is. Go ahead and search pub med about ‘poor converters’. It does not exist.
If you ‘feel’ better by adding T3 to your regimen, then more power to you. There is nothing wrong with the placebo effect.
T4 does not have to convert to t3. It also converts to reverse T3, which is 95% unusable.
It most absolutely DOES have to convert to T3, or your body can not do anything with it!
You are so full of bullshit, it’s disgusting!
Honestly, anyone can speak with their medical doctor about the likelihood of T4 not converting to T3. It is a basic necessity to life!
If you’re not going to provide some REPUTABLE source to back up your ‘statistics’, then stop commenting.
I assume this is a double post, but I will address a few more of your points.
Of course you have a high FT4 level when your TSH is low. That’s the way it works. When TSH is low, FT4(FT3) is high and vice versa.
There’s nothing to ‘give up on’ after reading my post or blog, for that matter.
Take a bit more time to understand the function of the thyroid and you may have better chances of really figuring out what your symptoms are about. I would suggest you start by getting your parathyroid function tested.
Comments like the double post above (by ‘miggs’) are SO typical of internet comments.
Of course the commenter can give the TSH level, but not the T4 level. Symptoms are mentioned, but not described. As per usual, the commenter does not have access to a ‘thyroid specialist’.
I really don’t think endocrinologists are that difficult to find, even in Great Britain (although to find a doctor you like can be). I’ve read ‘people’ complain about access to ‘specialists’ when their profile indicates they are right outside Baltimore, MD : The home of Johns Hopkins Medicine.
For some reason there is a group of internet ‘people’ who continue to harp on T3/T4 levels for thyroid cancer. I don’t understand it, and even in the face of common sense and basic human biology they STILL insist…well, whatever it is they insist? That T3 (cytomel) needs to be taken and FT4 & FT3 levels are imperative to be tested…I don’t know.
Let’s think about this. The T4 level is high? Ok, so how would we fix that? Add less T4 (levothyroxine)? Well, then your TSH is going to be higher. Add a T3? Then your TSH is going to be lower (which, in turn, is going to raise the T3 & T4 levels).
The only thing your body can do with T4 is convert it to T3. That’s the only thing it’s good for.
Hi there – you might like to read my post down below. The truth is that the recommended levels do not always result in a person feeling well. Some people for whatever reason, will not feel well on the same dose as the next person. There are way heaps of factors that affect the way that Thyroid hormone metabolises and works within the body. If you are new to this, then try and find an Endo that will work with you and will acknowledge that it is more important to ensure that you feel well than it is to achieve the recommended blood results. Be your own doctor and be informed. My situation is one where I have high TSH despite having good T4.T3 results and feel and present clinically as being well. The receptionist at my Doctors Surgery has a very low TSH and reasonable T4.T3 results but presents clinically as Hypo Thyroid. She is extremely overweight and does not feel well. Go figure! You make a very good point that I wish people would take on board, that everyone is different and everybody’s physiological response to THRT will be different. And the fact of the matter is that the ranges are constantly being changed as they add more sample population results to the mix. The ranges have changed heaps in the 30 years that I have been having my levels checked.
Good luck!
Excuse me, “Ramona”, don’t come onto MY blog and spew your lies to other replies! Obviously, “Miggs” is your alter ego that you have shown up to support.
Please, take your lies and reindeer games somewhere else. You are an example of the exact kind of INTERNET information which is complete trash.
Free or Total T4 and T3 measures are pretty damn MEANINGLESS when you don’t have a thyroid. The levels are designed to analyze thyroid function and when you don’t have a thyroid, you DO NOT have thyroid function.
Feeling good is a priority, but having a TSH above 2.00 mU/L is only asking for thyroid cancer recurrence. I can not stress enough how important TSH suppression is to thyroid cancer management for papillary & follicular thyroid cancer. No responsible endocrinologist is going to allow ANY patient to maintain a TSH of 10 or above.
Your information is incorrect and dangerous!
You are rude, ignorant and ill-informed. I couldn’t be bothered wasting any more time sharing my experiences on your blog in an effort to help people. I don’t expect you to publish this. I just hope you don’t cause irreparable harm to someone with your narrow minded perspective and your inability to accept that you just may not be right.
Oh, I’ll publish it, to show what an asshole you are. This is MY blog, and I certainly didn’t ask you to guest host. I certainly WILL NOT cause “irreparable harm” to anyone, especially considering that I am emphatic that people SPEAK WITH THEIR MEDICAL DOCTORS!
I am NOT a medical doctor, nor try to pretend that I am. I am sharing MY experience.
People can speak with their MEDICAL DOCTORS ‘Romana’ and see how INCORRECT your information is! YOUR information is almost guaranteed to kill a person either through unlivable TSH levels or thyroid cancer recurrence.
Hi I got my labs my tsh is 0.202 is that. Good level also I switched from leovox to nature throi after I read about needing T3 should I go back or are my tsh levels OK with this Med
I’m certainly not a doctor. You should take what works for you. You don’t need T3, your body converts T4 to T3, that’s all that T4 is good for. If you find you feel better on nature throid, that’s what you should take. Placebo effect has its value.
But if I don’t have a thyroid can my body still convert t4 to t 3. Thank you
Yes, your body can still convert T4 to T3. The conversion does not happen in the thyroid. You should speak with your doctor about the process.
Yes I will Dr don’t seem to want to take time to answer questions. Is 0.202 tsh level good level for cancer pt?
The American Thyroid Association guidelines at thyroid.org recommend TSH between 0.5 – 0.1. Although, if a person is high (or intermediate risk) there is value with TSH suppression below 0.1.
http://thyroidguidelines.net/revised/differentiated
HI! I had a thyroidectomy and radiation in 2009, and have never been able to lose the weight and feel crappy in general. I went to my endo today, and my TSH is .012. He wants me to lower my thyroid (synthroid med of 200mcg) to about 185 to make the tsh higher. I’ve been resistant as I’ve been so tired, and I’m afraid that if my medication is lowered it will be worse. But it seems like the super low tsh might be the problem. What’s your opinion on it?
I was suppressed below .02 for a few years, I thought I felt fine, but ends up, I feel even better with a TSH of .25. I have less heart palpitations and a bit more energy.
I am so glad I finally found this site. For years I’ve been upset that I didn’t get any T3 like other people, who had a thyroid or were on Armour, obviously did.
Levoxyl was recalled so now was my chance to beg my doctor for Armour. She relented. Six days and I couldn’t take one more day. Felt like if I stayed on it for one more week I would definitely be in the ER having or close to having a heart attack. Also, every afternoon, I got so sad, I wanted to die and I cried the rest of the day.
I had my thyroid out 19 years ago and have all sorts of problems-all I do is go to doctors. Foot pain. Knee pain. Shoulder pain. Facial pain. Tooth pain. Depression. Bladder problems. Gyn burning. Acid reflux. Palpitations. The list goes on and on. I was hoping for the miracle answer in Armour Thyroid-the ‘wonder’ drug. Not there.
Do you have any idea why I could have so many weird problems-are they really related to my lack of a thyroid? Why I could have depression (hypo symptom) at the same time my heart is racing (hyper symptom)? I’ve never been able to figure out how I could have hyper and hypo symptoms at the same time.
Another question is-how does the body convert T4 into T3? I watched a doctor explain how this is done by the thyroid-inside the thyroid- but since we don’t have one-where/how is it made?
I’m sorry to read you have so many aches & pains. I know I have to eat right, sleep right, and get moderate exercise to feel good. I added protein shakes to my diet about a year ago and it’s amazing what a difference it makes. I was feeling dizzy often and even though eating right, I would have incredible highs and lows through the day. Is this thyroid-less related? I don’t know, but I do know I feel so much better now that I drink protein a few times a week.
I could only suggest you watch your TSH level closely until you are feeling more even-keeled. Maybe your level is not consistent for some reason. You might ask to get a blood draw for TSH every six weeks for a few rounds to feel confident you’re holding at a stable level. Do you know your TSH level?
As I understand it, T4 is converted to T3 in the tissue & organs of the body. T4 becomes T3 by ‘giving up’ an iodine atom. I am not aware of this process happening in the thyroid. It is my understanding that the thyroid is only the producer of thyroid hormones.
Of course, speaking with a Medical Doctor is your best source of information. I would suggest checking out endocrineweb’s website to begin to understand thyroid function (or thyroid-less function). I find the language there easily understandable and it helps me communicate better with my doctor.
Be well & Stay strong!
Hello there,
I felt that I really needed to chip in about TSH levels. I had Thyroid Cancer 32 years ago and it was treated with surgery and radioactive iodine ablation. Since I started on THRT way back then, I have continually struggled with really weird bloods. My TSH has always been quite high, usually anywhere from 10 to 60 even though my T4 has been around 15 and T3 mid range as well when it was tested. On one memorable occasion my TSH was 159 (this is not a typo) and my T4 was 16! My doctor just looked at me like a stunned mullet. Me being sat there weighing 53 kg being 5’6″ tall (walking clothes hangar). Go figure. Over the years I have researched and asked questions. Never have I found any answers and so I simply continued to medicate myself according to my T4/T3 levels and dependant on how I felt. Whenever my T4 or T3 were on the high side I would get very thin and jumpy and all the usual symptoms of being hyper despite having TSH levels way up there. Last year however I finally went to see a new Endo and he told me that a small percentage of patients have difficulty in metabolising T4 and T3 meds (I am on a mix) and show the kind of blood result patterns and odd symptoms that I have had over the last 30 years. According to him I did the right thing in medicating to how I felt and also to the actual T4 and T3 levels. In my case I believe this to be true and I think that TSH levels can be misleading in some cases. I am not sure that it is right to encourage all people to keep TSH down because if they are like me it would be impossible to get TSH levels down low without turning crazy hyper thyroid. I would also like to point out that high or very high T4 and or T3 (as well as very low T4 or T3) can cause severe clinical depression and suicidal tendencies not to mention a host of other symptoms particularly including gut and digestive issues, aches and pains of all sorts and immune system challenges. Therefore thyroid replacement is a very tricky matter and each individual should be assessed on their individual symptoms and taking into account a holistic perspective of the persons overall health and emotional status. Frankly my best advice to anyone who has no thyroid is to manage your own health and medications with the help of your doctor – in other words, take responsibility for your own health because only you know exactly what it feels like to feel the way you do. Use the doctors to have the tests and get the prescriptions, but get informed about your Thyroid, get in touch with your body and do your best to give your body what it needs. And above all, live a healthy lifestyle – that means eat well, exercise some and be happy. Avoid stress at all costs.
TSH suppression is a lifelong therapy for the management of papillary and follicular thyroid cancer. As you can see from the ATA guidelines:
RECOMMENDATION 40
Initial TSH suppression to below 0.1 mU/L is recommended for high-risk and intermediate-risk thyroid cancer patients, while maintenance of the TSH at or slightly below the lower limit of normal (0.1–0.5 mU/L) is appropriate for low-risk patients. Similar recommendations apply to low-risk patients who have not undergone remnant ablation, i.e., serum TSH 0.1–0.5 mU/L.
TSH should not exceed 0.5 during initial management and should not be higher than 2.00 mU/L for long term management for those deemed low-risk.
I am not sure what you hope to glean from Total or Free T4/T3 levels, as TSH suppression is the focus for papillary and follicular thyroid cancer. Especially considering that you can not change T4/T3 levels without changing TSH levels.
Furthermore, a TSH over 5 mU/L is not healthy for anyone, thyroid or not. And TSH levels of 10, 60, or 159 are absolutely unacceptable!
Oral T4 (levothyroxine, synthroid, etc.) is a slow acting hormone and takes several weeks to stabilize after a dose change. I can’t imagine any doctor would recommend or encourage blind dosing of T4 based on a ‘how you feel that day’ mentality. It’s not an aspirin, nor a medication.
I suggest you work with a doctor and monitor your TSH very closely over the next year. When you do not have a thyroid, it is possible to have too little thyroid hormone. Signs of too little thyroid hormone (or a dose too low) are: fatigue, cold intolerance, constipation, dry skin, mild weight gain, impaired memory, depression. You’ll know you have too little thyroid hormone when your TSH is over your target TSH goal for thyroid cancer management (example: over 0.5 mU/L or over 2.00 mU/L).
Be well and please get your TSH level under control.
I had horrible joint pain, heart racing when my TSH was simply too high for me. I was about .4 or so. My doctor said I need to be below 1. I too am a cancer survivor. When I got my TSH back to about .9 the pains went away. I have no idea if that will help you or not but it did me.
Hello,
Thanks for your response. To be honest, I am not sure that you read my post thoroughly or perhaps you didn’t understand where I am coming from. I have been monitoring my TSH with the help of my doctors for over 30 years. I am perfectly fine – generally I do not have any symptoms of being hypo or hyper and I do not appear to have clinical symptoms of either. For all this time my TSH has been well over the upper end of the range parameters for TSH. Despite this my T4 and T3 levels have been good. You are casting aspersions at what I have written which is the truth and there is plenty of information available on the internet to support the fact that there are some patients who simply don’t metabolise T4 well and end up with skewed blood test results and apparent high TSH levels despite the fact that they are otherwise well. That is why I posted. Notwithstanding the fact that a low TSH is what Thyroid Cancer survivors aim for to avoid re-occurrence, not everyone will be well by attempting to achieve a low TSH within recommended parameters. For some people – like me, this course of action would see them develop hyper-thyroid syndrome and could cause some quite severe health issues. Your comment that TSH levels of 10, 60 or 159 are unacceptable is understandable to some extent, however underlines the lack of depth of your knowledge of the subject matter. I have survived for over 30 years with my thyroid management regime and my specialists are comfortable with my thyroid status. Are you saying that my doctors are wrong??
I’m saying you sound fake. No one is going to live comfortably with a TSH above 5, much less above 10. That’s like saying your specific body temperature is normal for you at 115(f) degrees.
Not Gonna Happen.
Take your lies somewhere else and DO NOT show up on my blog trying to belittle ACCURATE and TRUE information that is easily verifiable by a medical doctor!
And you, ‘Romana’ have NOT written any truths. Let me make that PERFECTLY CLEAR!
This is another example of fake people on the internet. ‘Romana’ wil tell you “For all this time my TSH has been well over the upper end of the range parameters for TSH” but is not giving any TSH levels.
First of all, when we manage papillary/follicular thyroid cancer, NO ONE should be maintaining TSH over 2.00 mU/L. I know, I’m a broken record over it, but TSH Suppression is the first line of defense in protecting yourself from thyroid cancer recurrence.
Second 2.00 mU/L is a normal TSH for those WITH thyroids. “Romana” would try to have you believe that 10 mU/L or over is normal, it’s not. It’s not for anyone.
And then the belittling of my CORRECT information! Readers beware, this is 100% pure internet tactic, straight off of inspire!
All you need to do, dear reader, is verify “Romana’s” information with your medical doctor to see what a load of crap it is. Simple enough. You certainly do not need to take my word for it, and shouldn’t.
I just CANNOT emphasize more that a TSH of 10, 60, or 159 mU/L is NOT normal! Any doctor allowing his patient to reside at a TSH of 10, 60, or 159 mU/L is not a well-trained medical doctor!
It is not acceptable or safe or anywhere near the normal upper limit of 5.00 mU/L.
It is very obvious that this poster is either very misinformed, a liar, or simply has no idea what unit of measure is being used to monitor ‘her’ TSH levels.
I stumbled on your site and find it very interesting and would like your opinion on my situation. I also want to apologize for the long post. I had thyroid cancer and total thyroidectomy in Nov. 2007. I did the radiation thing. My endo has never checked my t3 or t4 levels. Once a year (Nov), he checks my TSH and Thyroblobulin levels. He’s always wanted my TSH level to be “in range” – he’s never tried to keep it low. He says I remain cancer free. I’ve only ever been on 137 mcg Synthoid until I was starting to feel tired more often. My TSH in Nov 2010 was 3.12. He then added .05 mcg Cytomel for a “pick-me up” in Dec 2010. Here’s where it gets a little complicated.
I also have progressive multiple sclerosis. In Nov of 2011, my TSH level was 0.405 – I guess because of the addition of Cytomel. I was feeling good, moving (more like pivoting well in my transfers) as well as I could for someone who is in a wheelchair. I started an MS drug (Rebif) in Dec. 2011. I had been on another one before that ut had bad side effects. In Nov 2012, my TSH was down to 0.055, but I was still feeling fine. I had no thyroid-related symptoms. Even so, my endo lowered my Synthroid dose to 126. TSH level was checked and in Jan 2013 was 0.167. He then lowered my dose to 112 and said he’d check my TSH next Nov like always. He thought I’d be fine. After that, I could barely move. All energy gone, no stamina for transfers. After trying to figure this out through research, I discovered the particular MS drug can cause issues with thyroid hormones. According to more than one Rebif nurse (they have a “hot line”), it can mess with thyroid hormone levels. Not having a thyroid didn’t matter to them.They said stop Rebif and call doctors. So I called my neuro and endo. My endo let me go back on the 126 dose. My neuro took me off Rebif. I was feeling better but not as good as I was in 2011. My endo then agreed to let me go back to 137 since I stopped Rebif. I have my TSH level checked again in July 2013. I’m back to feeling and moving a bit better but I am still not as energetic as I was when I as 137 Sythroid and the Rebif. I still need a lot more help than I did before this all started and doctors know I’m home alone M-F during the day.
I think maybe I need my TSH level to be lower than ”in range” because of my fatigue and leg weakness, which is a big part of my MS – thus the wheelchair. I know this endo won’t go up to the 150 dose if my TSH is “in range” but it sounds like the range isn’t necessarily correct for every person. I will be having another brain MRI after my TSH it where it “should be” but if that shows activity (new or heightened lesions) then my neuro will put me back on another MS drug, which may or may not start the cycle all over again.
I’m thinking maybe I need to try a different endo. Do they really vary much? I don’t know if I can wait until I have blood work in July and I don’t think it’ll matter. But then it may take that long to get in to see a new endo. My neuro suggested having my t3 and t4 checked, but she also said she is not an endo and it sounds like those numbers don’t matter based on the fact that I have no thyroid. Thoughts? Thanks.
Hi Anne,
Here’s my opinion:
You need to have your TSH checked more often than once every 12 months. Especially since the levels you have noted are so varied. Your body is not keeping your TSH at a steady level.
For example, my TSH is between .25 – .27 at 175 mcg every time I get my TSH level checked. I am well established on this dose so my doctor recommends TSH testing every 6 – 9 months.
Your doctor needs to explain what is meant by ‘in range’ for you specifically, in relation to TSH suppression for the management of papillary or follicular thyroid cancer.
TSH should be no higher than 2.00 mU/L for long term management of papillary/follicular thyroid cancer for those low risk. Your doctor should be trying to keep your TSH low (2.00 or below) and that should be his primary focus in your care, if you had papillary or follicular thyroid cancer.
From what you’ve written, your current endo does not sound well versed in papillary/follicular thyroid cancer management.
You would need to ask your neuro what she thinks would be revealed in your T3 & T4 levels. Maybe she’s talking out of her butt or maybe it’s something MS related. Only your neuro can answer that question.
I would suggest monitoring your TSH level very closely (every 6 – 9 weeks) until you are well established on a dose (maintaining a specific TSH level, at a specific dose).
Be Well!
I had horrible joint pain, heart racing when my TSH was simply too high for me. I was about .4 or so. My doctor said I need to be below 1. I too am a cancer survivor. When I got my TSH back to about .9 the pains went away. I have no idea if that will help you or not but it did me.
Thanks for your input, stewlaur. It’s probably a double-edge sword that you feel a difference in symptoms with such a minor change in TSH. It does not take much to go from .4 to .9.
I hope you continue to feel improvements.
I discovered that this may have been caused by too much T3. I went back to the .125 and didn’t have this issue when I stopped the T3. Now I am on .137 for other reasons.
Yes, if you stopped taking an oral T3 and remained on the same dose of the oral T4, then yes, your TSH would increase, as T3 also decreases the TSH level.
Sounds like you got it figured out. Good luck on your new dose!
Thanks for your opinion. This endo has been with me since my papillary cancer was discovered, but his practice is also changing into more of a weight loss management clinic, so maybe another endo is the ultimate answer. I think he’s more concerned with the cancer not retuning than anything else. But I do wonder about my TSH levels just being “in range”. That’s the range that shows up on my blood work paperwork from the lab. It’s listed as 0.358-3.740. I will talk to both doctors (or their nurses anyway).
The reference range on the paperwork from the lab are for people with thyroids. It does not reflect TSH suppression for papillary thyroid cancer, which should be no higher than 2.00.
Good luck, Anne!
Hello,
I had my thyroid removed back in mid May due to Metastatic Papillary Thyroid Cancer. I had a recent blood test and had to be lowered from 175 to 150 of levothyroxine because my tsh was .02. Was that dangerous? Because they changed it immediately upon receiving results. I had just filled my previous dosage too lol.
sounds pretty darn normal to me in the long term management of thyroid cancer. if you had mets, and you’re high risk, you should be suppressed below 0.1, according to the american thyroid assoc. guidelines for thyroid cancer management. your med adjustment from 175 to 150 will probably bring you closer to 0.1, to hazard a guess, I would say 0.07. your doc probably thought you were too suppressed.
just keep getting your TSH tested, to make sure it’s stable.
I was diagnosed with papillary carcinoma last year. I’ve already went through surgery and RAI treatment. My question is, how to you know if you are considered a high risk patient, or low risk patient? From what I have read on your post, that will determine what your TSH levels should be kept at. I had blood work recently and my TSH is 0.969 and T4 is 9.1. My Endo asked me if I had skipped a pill and I told him I had not. I am on 100 mcg of Synthroid and he wants to up it to 125.
Hi Jenna,
Your doctor will classify your risk level taking into consideration the stage, type, variant, spread, etc.
I don’t know why your doctor would ask if you skipped a single pill, but once my doctor made some crazy comment that my lab results looked like I had forgotten to take my pill for a while and then took a whole bunch of pills at one time, to which I thought (and still think) WTF???
Your doctor must want you suppressed at or below 0.5 currently since requiring a dose increase. Suppression between 0.5 and 0.1 is the norm for the first few years.
Ask your doctor your risk classification.
Good Luck!
I will not see my Endo again for a few months so that’s why I was trying to find out some answers. Thanks for the info.
You can always call and ask. You don’t have to see your doctor to find out. It should be part of your medical record. You can also request a copy of your records from the doctor’s office, too. There is no need to wait to see your Endo in person.
You are a bitter and cruel person who does not deserve to be part of the online thyroid community. Your profane childish outbursts, while amusing, won’t get you anywhere good, and surely will not work in your favor to sway people towards your point of view.
I’m not trying to sway anyone to any point of view, “Gracie”. I don’t get a kickback for selling thyroid cancer propaganda. That’s the difference between me & thyroid cancer “non profit” groups, which, from your tone, you’re the leader.
There are plenty of places on the internet that will gladly accept your nonsense.
THOUSANDS of people find my blog useful, uplifting, to-the-point, and a “BREATH OF FRESH AIR” after enduring the rampant internet lies about thyroid cancer management.
If YOU don’t like my blog, don’t read it. Easy Enough.
Not to mention, “Gracie”, your comment is certainly off base in reference to the above original post.
I can only guess you’re getting hit in the pocketbook now that there’s a REAL voice on the internet, sharing REAL information, for FREE!
have you or anyone that you know had your TSH level do a sudden big jump from 1.28 to 4 point something? within 6 weeks? if so what was the cause? This just happened to me and my doctor said it could be diet related but I am trying to find out more and curious to see if anyone else has had this experience.
I assume this is in relation to stopping T3 and remaining on the same T4 dose? (see reply to your comment up above).
I never realized my T3 could be lowering it that much. I was taking .112 with the T3 and found out my level was too high at 1.28. So I went to the .125 and stopped the T3. So then it jumped. That is some crazy stuff. My doctor eventually wants to put me to .150 so I am hoping it helps. This has been a bit of a scary experience. thanks for your help!
Good luck with the new dose!
thank you
By reading your original post, I just thought I would share something I’ve heard about “poor conversion” of T3 to T4. My sister-in-law had hyperthyroidism that went into Graves Disease, she lost a tremendous about of weight and her heart rate was way too fast, that they had to put her on heart meds. Anyway she was given the option for a total thyroid removal or to have it killed by a dose of radiation. She decided to have it killed. A few years go by and she starts to have horrible migraines, she can’t function, can’t eat and is vomiting all the time. They performed a CT scans, MRI, 2 spinal taps, blood work and other tests. Her Endo could not figure what was going on. She went to her family dr for some other reason and decided to tell him her tale of woe and he decided to do a full panel of blood work on her thyroid. Now, this is what her family doc told her, that her T3 levels where the highest he had ever seen and that her body was not converting the T4 to T3 like it should, therefore he placed her on T3 meds. She told me, her migraines immediately went away after a few days on T3 and she feels the best she has felt in years. So maybe it is possible, I don’t know. Just thought I would share that. I also go to an Endo, ( I had thyroid cancer, too) he told me that a thyroid cancer patient should never take T3. He didn’t explain why so I did some searching on the web and it said you should not take T3 for the simple fact that when you go to have blood work to check for cancer that being on T3 could give a wrong impression and make it look like you have something growing in there and you really don’t. So I definitely want to stay away from T3. I feel totally fine on T4 but he did increase my meds 5 days ago to 150 mcg because I am considered “high risk.” He did take me off my meds a few months ago (for 6 weeks) because my oncologist failed to do a simple blood test at my 6 month check-up. You know the one, where you have to get the thyrogen shots, the diet, and the scan. So, I was put back through “hypo hell” just to have one simple blood test. It was bad to say the least, my TSH levels were 139. My husband had to roll me around in a wheel chair if we went anywhere, the pain in my body was almost unbearable. Thank God, the test came back great and I am still cancer free. Thanks for letting me share what I have heard and my own experience.
Yes, T3 levels do have value when a person HAS a thyroid. In Graves’ disease, they do not kill off the entire thyroid, they try to tame the thyroid hormone production. Since your sister’s T3 was unusually high, her TSH was most likely unusually low. Who knows. It’s great she felt better on an oral T3, as it’s highly unusual for a person with Graves’ disease (overACTIVE thyroid) to take T4 or T3 because these hormones drive the TSH lower (leading to the hyperthyroid state she is trying to recover from).
Also, identifying a problem in the deiodination of T4 is not as simple as looking at the T3 (free or total) level.
The medical community finds little value in prescribing oral T3. Some will, for the placebo effect, but since oral T3 usage is not empirically shown to provide a better health benefit over oral T4, most medical doctors stick with oral T4 only.
There is thought that porcine derived oral thyroid hormone could lead to false positive Tg readings, so I think you’re getting your information crossed. Synthetic T3 does not lead to inaccuracies in Tg levels. Not that it is proven that porcine derived thyroid hormones do lead to inaccurate Tg levels.
Of course, I am not a doctor. To get the most accurate information, each person should speak with their preferred medical practitioner.
Sorry to read you would have to stop your thyroid hormone just for a stimulated Tg reading.
Thanks for sharing your experience.
OMG! I am confused. MANY years ago before I found out I had thyca, I had so much pain especially in my legs and knees- I could not walk for more than 2 minutes at a time-I thought it was because I was putting on weight. Eventually I found out I had thyca but I never connected the two.
I had surgery and RAI and it’s been 20 years and I still have many medical problems-sweating, EXTREME sweating when I barely move (making the bed, getting dressed, sometimes I know it’s caused by stress-a social event,etc) that it has really ruined my life. I’ve been to many endos and gyns and I take female hormones now but they have not helped.
So finally my PCP said, “let’s do something drastic-let’s cut your thyroid med in 1/2 for a 2 weeks and see if it helps” I almost fell off the chair and said “but my endo says….” He said “it’s just a test, it’s been a lot of years-let’s just see if it helps and I’ll take care of your endo” So okay, I did it. My carpal tunnel became so severe I just wanted to cry-I thought I did something. I couldn’t unscrew the lids off my pills or even write-finally it hit me-my lowered thyroid medication-so after just 6 days I restarted the levo and the very next day-my carpal tunnel pain was 95% better. How can this be? How could it help so much overnight? But it has.
During those 6 days-sometimes I thought my sweating was better, sometimes I thought-this sucks and is not helping at all-but I was told it takes a while to get the thyroid med out of your system enough to see if it helps my sweating problem. But I could not go the 2 weeks-due to my pain level-I have other pain areas as well-does this mean that maybe if I took a bit more levothyroxine-it may really help my pain issues?
Does anyone else out there have a sweating-I mean over the top sweating all over-head, neck, trunk-so bad you feel like your eyes are gonna’ roll in the back of your head sometimes and it prevents you from exercising? Does anyone have a lot of pain issues? I just want to know am I on too much or too little?
It would seem that too little would cause pain and too much would cause sweating. Any comments would be appreciated.
To thycarant: The doctors measure the TSH but also the T3 & T4-if my TSH was “good” but my T3 was low-out of range-do you think that would give me pain issues? And if it was too high, it would cause sweating?
One doctor told me that part of the problem was that we have steady state thyroid levels due to medication and regular people’s thyroid levels fluctuate on a moment to moment basis depending on how much they need at any given moment. That a regular persons levels actually go up and down in microseconds depending on the need-why do you think some people without thyroids do better than others? I look at Sophia Vegara and Brooke Burke (they’ve had the cancer) -they’re so thin and seem to have energy. I’ve gotten fat and feel like crap.
Would you say what state you’re in-if you were near me, I’d love to go to your doctor.
Hi Lisa,
Even if you were in my state, I would not recommend my endo. My doctor is a fine endo, but only because I research and decide the course of action I would like to take and we decide together if it is appropriate. I’m quite certain my endo would attribute your aches and pains to something other than not having a thyroid and taking levothyroxine.
You need to monitor your TSH and see where the level is, it should be no higher than 2.0 and the actual level will depend on your recurrence risk and thyroid cancer type.
Your T3 is meaningless, since you don’t have a thyroid. You can NOT change your T3 level without changing your TSH level. T3, T4, and TSH are linked together in a negative feedback loop, so as TSH rises, T3 & T4 lower. If your T3 is low (out of range) then your TSH is high. You need to lower your TSH to raise your T3.
To me, it sounds like you need to monitor your TSH level closely, at least every 12 weeks, to make sure it is consistent and on target. Take your med at the same time, every day, and wait one hour until eating or drinking anything aside from water. Do that for the next 6 months. Also begin to walk 20 minutes a day, supplement your diet with a nutrition shake and see if you start to feel better.
I know I feel much better now that I am regimented on waiting an hour to eat or drink after taking my thyroid pill, walking a mile a day, and supplementing my diet with an organic nutrition shake.
Try it and see if it works for you.
Remember, I am not a doctor, and can only share what works for me. Speak with your physician before making fitness and nutrition changes.