Should I be more concerned with my numbers?

[EmmaJane00]

Hello,

I am hoping to get a little guidance on my hypothyroid condition. In October 2008, my internal med doctor diagnosed me with hypothyroid with a TSH of 5.12 and free T4 of 0.7.  He started me on 50 mcg of synthroid at that time. About 3 months later in late December 2008 he ordered a repeat lab and my TSH was 3.35 and free T4 still at 0.7. At that time the doctor was satisfied with my numbers and continued my dose. He then didn't bother to have my labs drawn for quite some time. Finally in October 2009 after I complained that I still have all the symptoms I had with my original diagnosis (always cold all the time, hair dry and falling out, skin dryness) he ordered a repeat TSH that came back 4.34. He did not order a free T4. He was still ok with that number, but agreed with my instance to up my synthroid to 75 mcg. Now I just had repeat labs and my TSH for February 2010 was 3.94 with a free T4 still at 0.7.  So my question is, should I be more concerned?  My doctor is happy with these newest numbers and wants me to stay on the 75 mcg. I'm concerned because my free T4 has never changed since my diagnosis and to me the TSH has hardly changed despite treatment. Plus I still have all my original symptoms. Shouldn't a higher medication dose have changed my lab numbers more? Thanks in advance for any help.

[6hashi]

"From how I am reading goolaara's question, I think what's asked here is How are you doing with your lastest treatment with your thyroid medication?"

I am feeling better gradually and I can say that 650 mcg/week is the proper dose for me,but since I didn't reach the steady state yet (less than 3 months) ,I'll have the blood test soon and then see what will the level of my FT3 be !

"I am curious... How have you been feeling? Are you symptomatic still with your condition with this treatment you are on?"

I am ,since I take the proper dose less than 3 months , so not to talk about the time it needs to heal ,but I feel certain improvement , and I am in a position that can certainly know that I hit the correct dose !

best wishes ,

[goolarra]

Yes, my question was not answered.  And you paraphrased it quite well.

Though I don't recall actual numbers (c'mon!), 6hashi's FT4 is at least midrange if not higher, FT3 is, in my opinion, "too low".  His TSH goes down somewhat after each meds increase, then proceeds to rise.  Once again, can't recall details, but gimel and I both advised him to add T3 to the mix, but he simply will not entertain the idea.  He's completely convinced that once his TSH is "in range" and stays there, he will feel fine, no matter how dismal his FT3 remains.

You can lead a horse to water...

[stella5349]

Hi - I was wondering on your comment here:

""And speaking of you, the last I heard your method of dealing with your thyroid was not working out all that well for you.  Has your FT3 improved any? "

I am yet three months on the same dose , so I'll have blood test in few weeks , " ?

From how I am reading goolaara's question, I think what's asked here is How are you doing with your lastest treatment with your thyroid medication?

Your response says you are on the same dosage as you have been on for 3 months...  You answer : Your blood work is scheduled in a few weeks. but I don't think you answered the question...


I am curious... How have you been feeling? Are you symptomatic still with your condition with this treatment you are on?

I read above you are feeling "human" again little by little... but that is pretty general for me to understand.

[goolarra]

Yes, it could be the dyes.

Yes, bizarre.  I've also heard that the effects of the meds are much better if you spin to your right fast three times, throw salt over your left shoulder and sneeze before taking your meds.  Of course, that's if you live in the northern hemisphere.  If you're in the southern hemisphere, you spin to your left, throw the salt over your right shoulder and cough rather than sneeze.   LOL

Whatever works...

[6hashi]

"Any effect from taking two 50s as opposed to one 100 is purely in your mind, unless something else is different about the two (manufacturer, etc.)."

I am aware to that , I know  it sounds bizarre, I also didn't manage to understand why is that , it was not my idea actually , I read that some where in the internet when I was diagnosed ,and I tried it when I discovered that the eltroxin causing me serious transient side effects ,and it does work, maybe it's related to the color in the pills or the inactive ingredients in the pills , I am not sure why .

[goolarra]

Whew...I'm so glad to see that's a WEEKLY dose...you had me terrified for a minute.

Okay, Mr. Science, how's your math? Two 50 mcg pills = one 100 mcg pill.  Any effect from taking two 50s as opposed to one 100 is purely in your mind, unless something else is different about the two (manufacturer, etc.).  

[6hashi]

"You take 2x50 instead of 1x100?  Do you mean you spread out your levo dose throughout the day?"
No ,I take two pills of 50 once a day !

"Surely this is a typographical error:  "650 is the correct dose for me ".  You are not taking 650 mcg of levo, are you?"
I do, per week !

You are member number one in this forum , I say this honestly .
best wishes ,

[goolarra]

You have to be the most tenacious person I have ever met...well, it may be a tie with some of the others I've known.

Yes, science aside (FOR A MOMENT)...there are sides of this issue that are not quantifiable.  I doubt a day goes by on this forum that we don't hear from several people who are being treated on TSH and are miserable...and those are just the ones who find us.

Semantics, oh stubborn one, once there are enough exceptions to a rule, you have to start questioning the rule itself.

You take 2x50 instead of 1x100?  Do you mean you spread out your levo dose throughout the day?

Surely this is a typographical error:  "650 is the correct dose for me ".  You are not taking 650 mcg of levo, are you?

[stella5349]

Ok - Let's do the math here for clarification w/ definations...

TSH: Stands for thyroid stimulating hormone, a hormone produced by the pituitary gland at the base of the brain in response to "signals" from the hypothalamus gland in the brain. TSH promotes the growth of the thyroid gland in the neck and stimulates it to produce more thyroid hormones. When there is an excessive amount of thyroid hormones, the pituitary gland stops producing TSH, reducing thyroid hormone production. This mechanism maintains a relatively constant level of thyroid hormones circulating in the blood. TSH is also known as thyrotropin.

( this med term TSH is telling me - (as it should tell doctors) this is ONLY a pitutiary signal test effecting thyroid hormones.. clearly here w/ defination it is not the sole testing to use regarding hypothyroidism or even hyperthyroidism for that matter. )

http://www.medterms.com/script/main/art.asp?articlekey=5858

Now take Free Testing terms: meaning FT3 and FT4-

http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=cm&part=A4228

This article is huge and could fall into debate on the whole thyroid testing but if you really read and understand what it is saying - it does say that the free testing is really thyroid hormone testing done properly to find problems.

I have to agree with gimel and goolaara again on there patience on this topic. and reading the comment regarding so many people searching for wellness after just strickly being a TSH number for so long with their doctors seems to always rear up here. You can open the board up everyday and read at least 5 new posts on any given day - with someone that has a "normal" TSH ( which as we know - so many who post that normal number is NOT normal) and the free testing is virtually ignored almost all the time..  - this wears on anybody that has seen better thyroid health - personally basing their levels on Ft3 and Ft4 - more than TSH. It seems it is always a repective post day after day - month after month.

If the TSH was such a vital number for thyroid wellness then why is this thyroid board so popular with seekers wanted to know why they feel like garbage after that test was done?  

For me - only as a member - the TSH measured did nothing for me to get well - it was figuring out who would test the Frees/ after learning about them on my own - .doctors who understand them (crutial here) and then treat according to those w/ symptoms...

respectfully I have to add too... for me - I had 6 endo's in my 5 years of disability... and      e v e r y   s i n g l e    o n e... based my thyroid levels on the TSH.. it was frankly a waste of money and I walked out every one still feeling like death - for me to see a "specialist".  I am happy 6hashi, that you have found someone who you feel has been the answer for you to get well - but viewing the board in many members - they went to an endo or specialist -  pursay - and walked out with a clean bill of health - with maybe a script for stress - or depression - or anxiety or cholestrol pills etc.... and they are right back to square one with still feeling miserable...

Why? Just take that one conclusion and try to come up with some reason.. Why do so many thyroid patients after being measured by TSH - or just TSH and FT4 still remain ill? For me, it was debunking the TSH and moving toward free testing. and many others found doing this is vital.

and why the fight for testing the frees with doctors? - What is it off the doctor's back to just run them when they are asked to from the patient? Its no skin off their backs to run the darn things - so why??? why?? this fight all the time? Its stupid. or it is Conspiracy?

Cancer. Cancer suppression. and the role of TSH.. again, this is the only test really spoke about here and my question is - Does the TSH really effect cancer suppression? My answer ///flat out is no... absolutely not. This is NOT the way to view cancer suppression. The TSH is definately available to determine a number on a 1.0 or below - if there is hormone in the system - ....but what "hormone" suppresses that TSH? -  The best way to suppress the TSH is through the Free T3.. Then direct T3 in way shape or form could keep that TSH suppressed.. right? yes.. it does... and can. Everybody knows too..... how hard it is to get a T3 medication or a combo med right? - again... regarding cancer and suppressing that beautiful TSH and knowing fair well T3 will do that for the TSH ..... then ... a g a i n ...... I have to ask is why not try the meds ??? I hate to keep shooting the "conspiracy" word out there - but in my view I am at the point where I lean - more and more that keeping us ill is more important than getting us well in many views....

FREE T3. thats the hormone that suppresses TSH. So why is that not looked at with these specialist?

I don't know what they are taught in their 7 years of studying. I have a theory but not knowledge on their classes.

The free T3 is studied as a cardio effect hormone more than a correlation to TSH and Free T4 thyroid wellness hormone and of course we all know how important heart research is.... so if there is more  FREE t3 in the system - it effects the cardio aspect of our bodies and that is always taught to be put as a low hormone - but its not that all the time.

I am sorry - but my views and research I did to get well are not the protacol studied to receive a license  for A-typical thyroid endocrine practices... - but so many thyroid patients - cancer or hypothyroid find following the free testing and and eliminating the TSH gives them an all around healthier outcome.

[Barb135]

I'm going to have to agree with gimel and goolarra.........I'm a classic example of one whose doctors tried to treat using TSH only and I thought I was going to die.

I started out with a TSH of 55+ and was put on synthroid, started at low doses and increased gradually, as we all suggest be done.  That is the *only* thing my doctor did correctly.  I got up to around 100 mcg synthroid and was beginning to feel better, but still not good; however, my TSH went to the basement and as soon as my doctor saw that, he began decreasing my med until I was back down to 50 mcg, but my TSH wasn't going back up.  He wanted to drop me back to 25 mcg and fortunately for me, about that time I got sent to an ENT for what was thought to be an unrelated  issue.  The ENT saw immediately what was happening and he sent me for further testing (antibodies) and ultra sound, dx'd Hashi, then referred me to an endo.  

In the meantime, I found a lab that would do blood work without a doctor's order because all my doctor was having done was TSH and TT4.  I had Free T3 and Free T4, along with TSH.  The results came back -- not the least bit surprising to me:  my TSH was still very low (0.016), and my FT4 was a bit higher, but FT3 was barely in range.  

I got those results from the lab just prior to my first appointment with the endo, so I took them along.  At first, he said the same thing about my TSH, but when I pointed out the FT3 and FT4 results, he saw immediately what I was talking about. It turns out that I also have slight conversion problem.  He upped my levo (yes, he switched me from synthroid to generic levo) AND added cytomel.  I was tested again in 6 weeks and both my FT4 and FT3 had come up slightly, but my TSH was still really low -- it stays right about 0.01 and has been there for well over a year.  In spite of my low TSH, we continue to increase my dosage whenever needed based on symptoms and FT4/FT3.  We have tweaked my meds so that for the past few months I have been doing quite well.    

I finally got rid the pcp who kept lowering my doses, but the new one I found did the same thing; was ordering only TSH and TT4 and trying to adjust med based on TSH; of course, I went totally hypo again in no time and had to get my endo to readjust my med.  I finally told my pcp last month that my TSH *has* to be kept low and that we have to go by FT3 and FT4 or I go hypo immediately.   I even showed  him a lab report from my endo and explained the relationship between the FT3/FT4/TSH.  He didn't like it that a "lowly patient" was telling him what to do, but he listened and on the next blood work I get for him in July, he ordered both FT3 and FT4, along with the TSH.  

I will never again let any doctor treat my thyroid based strictly on TSH.  If they had continued to try to raise my TSH, I would probably have been taken completely off my thyroid med.  Although it's taken 2 yrs to get there, I'm feeling better than I felt in years............

Oh, by the way --- I'd also like to point out that it's *not* NECESSARY to have an endocrinologist treating you.  The key is have a doctor, whether it be a pcp, endo, ENT, DO, OB/GYN or whatever, that fully understands (or is willing to learn) thyroid issues and is willing to treat by adjusting FT3 and FT4 to alleviate symptoms.  It's also advantageous to have a doctor who is willing to find the cause of your hypothyroidism (i.e. Hashi's, etc).  

[6hashi]

Dear goolarra ,
"Re: subclinical vs. primary.  Who cares?"
"Science aside"
Then you are not "doing science" !(using American slang)

"There are just too many exceptions to the rule for TSH to be on the pedestal it's on"
I meant to write that sentence in my previous post , what you describe is the exception and not the rule !

"And speaking of you, the last I heard your method of dealing with your thyroid was not working out all that well for you.  Has your FT3 improved any? "

I am yet three months on the same dose , so I'll have blood test in few weeks ,

"Are you still swinging one way and then the other after every meds increase?"
I take small dose pills to overcome this , 2x50 instead of 1x100 .

"we're both pretty content with where it's gotten us.  Can you say the same?"
650 is the correct dose for me and I am feeling back as a human gradually !

best wishes,

[goolarra]

Re: thyroid cancer.  There are two options here if you become hyper before your TSH is suppressed to "optimal" levels for CANCER (not for YOU).  A) be hyper (i.e. miserable and suffering the consequences of the health risks of being hyper) for the rest of your life in order to prevent the POSSIBILITY of a recurrence sometime in the future, or B) be comfortable now and deal with any recurrence IF it comes along.  This would obviously be a very individual decision.  But, I personally would opt for Plan B.  Hyper is NOT good for the body, and the destruction it wreaks can "get you" a lot sooner than cancer.  Not to mention how awful you feel.

Re: subclinical vs. primary.  Who cares?  I agree with gimel - it's merely a matter of severity.  Thyroid disease needs to be treated on the basis of symptoms (with FT3 and FT4 correlating with symptoms best, and in that order).  

Re: Hashi's.  "...you remain symptomatic untill reaching the proper dose by the guidance of the TSH ,think about it for a minute !!"  In a perfect world, yes.  But, we're human, not perfect, and that's why TSH is not "immaculate".  TSH can be affected by any number of factors in the hypothalamus/pituitary/thyroid axis.  Furthermore, TSH levels are affected by how efficiently we deiodinize T4 to T3.  It's volatile and varies considerable even intraday.  Science aside, all you have to do is read this forum and see how many people have been maltreated based on TSH levels.  There are just too many exceptions to the rule for TSH to be on the pedestal it's on.

And speaking of you, the last I heard your method of dealing with your thyroid was not working out all that well for you.  Has your FT3 improved any?  Are you still swinging one way and then the other after every meds increase?  Gimel and I are following our shared approach...we're both pretty content with where it's gotten us.  Can you say the same?
  

[3boydragons]

You have to fight for good care.  Most doctors seem to be obsessed w/ those lab numbers.  They don't listen to you and they don't seem to care about your symptoms.  I have fired more doctors because they would not listen.  It's a hard process, but worth it when you find a good doctor.  Remember, there had to be doctors who graduated at the bottom of the class...

[6hashi]

Dear goolarra ,
You gave me lots of support when I was sick,and I learned many things from you,exept for the advice to add T3 which I don't need !

"Keep suppressing his TSH to zero and tell him to live with no quality of life? "
What do you actually suggest here , to have the cancer back ??

"I believe you meant to ask how you determine primary from secondary hypo???  Yes, TSH is necessary to the diagnosis of secondary hypo.  But remember, secondary hypo is NOT properly a thyroid condition...it's a PITUITARY malfunction.  Suddenly, it makes more sense to use a pituitary hormone in determining a pituitary condition.  Surprise!"
I meant determining primary from subclinical ,read carefully the section 'subclinical hypothyroidism' in the link below :
http://en.wikipedia.org/wiki/Hypothyroidism#Subclinical_hypothyroidism

"In your example of Hashi's, you are just bolstering our argument for us.  If TSH is fluctuating while thyroid hormone levels remain the same, then it's obvious that TSH is NOT a reliable indicator of thyroid dysfunction."
That is not true at all , that indicate how important it is ,you remain symptomatic untill reaching the proper dose by the guidance of the TSH ,think about it for a minute !!

p.s I tried to be as clear as my English enables me !
best wishes,

[goolarra]

You have isolated a few specific thyroid conditions, and I would like you to pursue them further.

How would YOU treat a thyroid cancer patient?  The goal is to suppress TSH to as close to zero as possible.  Okay.  So, if the patient becomes incredibly hyper at a TSH of 1.0, what do you do?  Keep suppressing his TSH to zero and tell him to live with no quality of life?

I believe you meant to ask how you determine primary from secondary hypo???  Yes, TSH is necessary to the diagnosis of secondary hypo.  But remember, secondary hypo is NOT properly a thyroid condition...it's a PITUITARY malfunction.  Suddenly, it makes more sense to use a pituitary hormone in determining a pituitary condition.  Surprise!

In your example of Hashi's, you are just bolstering our argument for us.  If TSH is fluctuating while thyroid hormone levels remain the same, then it's obvious that TSH is NOT a reliable indicator of thyroid dysfunction.  

I am serious about wanting you to address these issues further and try to justify your position.  Please, speak now or forever hold your peace...

[gimel]

I have no idea what you mean by "the exact answer knows a person who studied medicine for at least seven years "

Regarding your other questions, I didn't invent this approach.  I've only tried to clarify it and publicize it in order to prevent patients from being confused by the "Immaculate TSH Belief" held by so many doctors.

Regarding treating a thyroid cancer patient, I assume you are talking about the approach of suppressing TSH levels.  If you medicate enough to alleviate symptoms, then you will be supressing TSH and thyroid gland activity as well. So what is the issue?

Isn't subclinical vs. primary hypothyroidism mostly a matter of degree of severity of symptoms and levels of the actual, active thyroid hormones?

Regarding your last question, since you believe that TSH is correlated with the levels of thyroid hormones, and is therefore adequate as a diagnostic, then how can TSH fluctuate like you state, when the Frees are remaining unchanged.  Doesn't happen.  And since TSH doesn't affect body functions other than thyroid output why should we really care about its level.  It is the Frees that determine biological activity in the body.

Now that I've tried to answer all your questions, how about addressing my big question.  Where's the evidence that TSH has any statistically valid correlation to symptoms and FT3 and FT4 levels?

[6hashi]

Dear gimel ,
First thing I want to emphasize is that ,I respect you very much !
I read many of your posts , and managed to understand your logic ,that instead of addressing  the resultant signal ,why not to address the actual thyroid hormones? the exact answer knows a person who studied medicine for at least seven years ,
I will try to answer your question (according to my understanding ) like this ;
How would you treat thyroid cancer patient according to your invented approach ?
how would you suppress his gland ??
how can you determine primary from subclinical hypo ??
and the most important, in the case of autoimmune, as in the case above and my self, it's the TSH that responding after starting the treatment and it's the TSH that fluctuate indicating the need for an increase in the dose,while the other Free's might remain unchanged !

all the best ,

[gimel]

I think you'll have to agree that the biological activity required to alleviate symptoms is regulated by the actual, biologically active thyroid hormones, free T3 and free T4.  And also that TSH does nothing other than signal to the thyroid glands to increase/decrease output of thyroid hormone.  If you agree with this then please explain to me why you want to emphasize TSH so much, rather than FT3 and FT4.  If it is because you think that TSH is an adequate indicator of thyroid levels and symptoms, then please give me links that show  a linear regression analysis of TSH to either FT3 or FT4 or both, that would support that contention.
Even though many doctors still cling to TSH as though it has an excellent correlation to thyroid hormone levels, I've done exhaustive searches and have yet to find a study that supports that conclusion. With the advancements in testing for free T3 and free T4, and all the info we see on the Forum every day, I've come to the conclusion that TSH is barely relevant any more.   If you cannot provide links to statistically valid supporting information, then I suggest that you stop emphasizing TSH like it was a valid diagnostic, and help members better understand the primacy of FT3 and FT4.

[goolarra]

I agree with gimels comments.  Just to add an explanation for why your FT4 and TSH haven't changed much despite meds increases:

When we develop thyroid disease, the thyroid does not just suddenly stop working.  Its function becomes impaired, but it is still able to produce some hormones to contribute to your levels.  Often, the thyroid function will continue to decline, allowing your thyroid to produce less and less hormone all the time.  During this phase of thyroid disease, meds levels have to be increased to compensate for your thyroid's worsening condition.  It sounds like your meds increases have just barely kept up with your failing thyroid and have never been properly adjusted to relieve your symptoms.

If your doctor is happy with your numbers, I think you might start a search for a new doctor...

[6hashi]

Oh , for this process to be done properly , you need and endocrinologist !!

[6hashi]

What you are through is normal ,once you are diagnosed and started on medicine your TSH will go down and then up , then you have to increase your dose accordingly, and test again in 3-4 months ,this process of increasing the medicine dose continue untill you reach the proper dose your body needs ,50 mcg/week less or more and you remain symptomatic,your Free T4 and Free T3 through this process might remain without change ,what the medicine actually do (among other things) is to get your gland into phase where it does not work over time,it stabilizes it,this can take months ,so you need to be patient.

If you need any more clarification don't hesitate to ask !

all the best !

[gimel]

Unfortunately your doctor is one that has the "Immaculate TSH Belief".  I say unfortunate because TSH is a pituitary hormone that is affected by so many variables that it is inadequate as a diagnostic, by which to dose a patient.  At best TSH is only an indicator, to be considered along with more important indicators, which are symptoms and the levels of the actual, biologically active thyroid hormones, FT3 and FT4.

It is my firm opinion that the very best way to treat a thyroid patient is to test and adjust the levels of FT3 and FT4 with whatever medication is required to alleviate symptoms, without being constrained by resultant levels of TSH.  Free T3 is the most important of the two, because it is four times as active as free T4.  Many members of this Forum have reported that relief of their symptoms required that FT3 be adjusted to the upper part of its reference range and FT4 adjusted to at least the midpoint.

I suggest that you request that you be tested for FT3 and FT4, along with the TSH.  Also, it might be a good idea to test for possible cause of your hypothyroidism by testing for thyroid antibodies, by testing for TPO ab and TG ab.  You should also initiate a discussion about your intent to be treated for your symptoms by adjusting FT3 and FT4 levels, not TSH.  If your doctor has a problem with this approach you might as well start looking for a good thyroid doctor that will treat your symptoms this way.