Very High TSH But No Symptoms

[AshO78]

Hello. I was recently tested for TSH levels and I found it was almost 80, which is way above the normal range for adults (I'm 31 btw). But the strange thing is that I havent felt any of the symptoms commonly associated with high TSH. I have been in pretty good health throughout my life, I've remained within a normal weight range for my height, I'm leading a pretty active life which is to say that i dont normally feel fatigued or tired at all.

I had no reason to suspect that i may have a thyroid disorder and i got tested quite by chance. My question is that how could I have such a high level of TSH without experiencing any of the symptoms. Also, me and my husband are trying to have a baby, but my doctor has advised to wait till the TSH is down within the normal range. So, is it at all possible for me to conceive in this situation or not.

Thanks!

[goolarra]

This is a very old, long thread.  It would be best if you went to the top of the page and posted your own new thread by clicking the orange "Post a Question" button.  That way, we can address your individual concerns.

You can cut and paste what you've already said about symptoms.  Please also provide results of any other thyroid tests you've had.  Include reference ranges as they vary lab to lab and have to come from your own lab report.

[JoDeecousin]

My doctor said my TSH level is 7.4 yet I feel great!!  No fatigue beyond normal, (my morning starts at 4:30 am so by 8 or 9:00 pm I am ready for bed),  I exercise 4 or more times a day 2 are high intensity cardio, one is circuit and one is kick boxing with weights.  I try to do Yoga one day a week and I am doing 30 days of planking this month.  I am in administration so have a high stress job and am currently filling in for several people.  My hair and nails are fine , weight is stable, cholesterol is fine, etc.  I feel great!  Because of this, I do not want to take pills with side effects of any kind and with the commitment that it is for the rest of my life.  What are the ramifications of doing nothing for now??

[Smilerdeb]

I think you are right in regards to the TSH being 'confused' at the moment as usually when FT3 and FT4 levels are ok...TSH is around 2.3 -2.5 which is comfortable for me.
I know my FT3 & FT4 is ok as had them checked.
I simply see it as the TSH having no "on-off switch" at this stage with the Pit. tumour which means it is telling me I need MORE T4 med when in actual fact I dont need it or I would go hyper.

The warning sign was the TSH kept climbing yet the FT3 and FT4 was fine plus the feeling 'something else' was going on.

I also feel different...not really Hypo with this pit. tumour.
I get a crushing feeling in the head (like my head is in a vice) and also towards night-time get hot sweats.
So looks like the pit. tumour is in "overdrive" so to speak.
I have also noticed that reading is blurred (when I got new reading glasses 4 months ago).
This blurred vision with reading happened overnight. Also I had a case of severe vertigo at Xmas where I was even able to stand up or go to sleep(even being propped up with pillows)...the room spun and it lasted a good 10 days.
Hospital visit to the ER showed FT3 and FT4 ok (to my liking).

Other than that...no HYPO symptoms except top part of my body is very hot and legs very cold lol.
Work that one out!

Mentally I am fine...no brain gog, no bowel issues etc.
So I would say the pit. tumour is the cause of these symptoms.
It started Xmas but because of Dads Passing , I put it off for a while so that I would be able to cope with it.
Just the thought of a tumour scared me as 2 of my neices died at the age of 2 with brain tumours and an Uncle in his 50's.

You know how the imagination runs wild!
I started thinking all sorts then figured time to deal with it.

I go in Wednesday morning 6am and should be home by 7pm that night.
Because the tumour is at the front of the pit. glnd, it will be done nasally (up through the nose) so thats a blessing in itself.

[goolarra]

I think you're proving Barb's point here, Deb.  TSH doesn't cause any symptoms, in and of itself.  If TSH acurately refelects FT3 and FT4 levels (like it's supposed to do, but like it doesn't for so many of us), then it "appears" to cause symptoms.  TSH levels are simply telling us what the pituitary "thinks" about the FT3/4 levels...give me more, give me less.  It's function is just as a messenger, it doesn't affect metabolism directly.

With your TSH over 7.0, you are having the same symptoms (leg pain) that you usually have with TSH low.  I think that's because your TSH is no longer reflecting FT3/4 levels accurately (due to the pituitary tumor).  If it were, it would probably be quite low right now.  So, you can have the same symptoms with TSH over 7.0, or too low.  You used to be able to rely on your TSH (pituitary) to tell you when things needed a little fine-tuning, with the tumor, TSH is giving you a "false" reading.  I'm willing to bet that if it weren't for the tumor, your TSH would actually be low right now...you know yourself and your symptoms.  This is kind of "proof" that the TSH isn't causing your leg pain.  Well, that's my theory on your leg pain, anyway (and he//, I'm way cheaper than an endo, if nothing else!).

Yes, you do have to wonder what we pay them the big bucks for.  $140 for an endo...what a bargain!  We don't see specialists here for less than $200 (and you incur that at the handshake!).  At least, that's what I pay here.

I also think there's an interesting "thing" going on with Grave's vs. Hashi's.  I wonder if the slow death of the thyroid in Hashi's has a tendency to mess up the whole hypothalamus/pituitary/thyroid axis.  I've always felt that there was "something else going on" that tends to keep our levels at a set point.  Perhaps the slow death "resets" the genetically programmed set point???  Theory's always fun...

Best of luck with your surgery...we'll all be thinking of you.

[Smilerdeb]

Barb...I have found in some cases, my FT3 and FT4 to be fine ...my tsh out of whack and hypo symptoms so I dont usually look at the Tsh unless I REALLY have too.
I do know that the FT3 causes palps if high as been there.
As I said..everyone is different, everyone has different mollecular cells and DNA.

But not looking at the TSH.....if my ft3 is low/high then yes there are symptoms but up unitl now, its the Tsh that causes the agonising pains in my left leg if its low.
But recently dx with Pit. Gland tumour...TSH is over 7.0, FT3 and FT4 notmal but aches in left leg.

Figure that one out lol?

Gawd I'd love to get the money that the Endo's get for talking "garbage".
I knew I had a pit. tumour BEFORE the Doc did.
Thank Gawd I didnt pay $140 for a 2 minute session for an Endo to tell me the same.

As time goes on...you tend to get to know your own body and boy, does it save you a heap of $$$$.

[gimel]

Yes, there are statistically valid studies showing that FT3 correlated best with hypo symptoms, with FT4 a distant second, and TSH was insignificant.  Which is logical when you consider that FT3 is the most active thyroid hormone, followed by FT4.  Both of these affect metabolism and other body functions directly so statistically speaking they are only one step removed from the variable (symptoms) you are trying to affect.  

TSH on the other hand is a result of  the hypothalamus/pituitary reaction to the levels of actual thyroid hormones in the blood.  Since it is thereby three steps removed from symptoms, it it is highly unlikely for there to be any significant degree of correlation.  Plus TSH has a circadian rhythm, and peaks at around 9 a.m. and is lowest at around 9 p.m., with as much as 70 % difference.

Beats me why TSH remains the gold standard among doctors.  I figure it must be due to TSH testing having a longer history and perceived  reliability,  along with more recent development of accurate testing for FT3 and FT4.  In addition it may be related to the insurance industry wanting to minimize costs by only running one test.  FWIW

[Barb135]

Deb, is it not the level of FT3 in most of us that causes or alleviates the symptoms, rather than the TSH?  When I was diagnosed, my TSH was 55+ and I was put on T4 med only, my TSH, almost immediately dropped very low.  My FT4 levels began to slowly come up, but my FT3 did not; nor did I begin to feel any better.  Once I got on the cytomel and brought FT3 levels up, I began to feel much better, despite the fact that my TSH continues to be very low.  When they began dosing me based on my TSH (lowering my med), I became very sick.  

[Smilerdeb]

sorry was supposed to read...62.5mcg 4 times a week and 50mcg 3 times a week.

[Smilerdeb]

Personally I think everyone is different as we all have different DNA.

Barb has no symptoms with TSH yet I do.Although I do agree that the THYROID should not be treated by TSH alone.
The most important level in Graves patients is the FT3.

T4 med alone works brilliant for me and if I went by the guideline of the FT4 mid range and the FT3 high range, I would feel like a basket case....my FT4 is good near top range and my FT3 3/4 range.

I am on probably one of the lowest doses of Thyroxin 6.5mcg 4 times a week and 50mcg 3 times a week (yet did work my way up to 75mcg dailyand went hyper).
Also reminding you that I had RAI and also TT so have no thyroid.
Classic case with levels and meds? I dont think so.

Thats why I say we are all different.
My T4 med converts TOO GOOD sometimes and I have to miss a dose here and there.
Whereas others cant even get that FT3 to budge up.


From experience, I have put it down to 2 things.
If you have Graves...the levels tend to be higher with less meds.
If you have Hashi's, you need more meds.
But that is NOT a clinical statement...just something I have noticed over the past few years.


As for Eltroxin...that is banned in Australia as they found in trials in New Zealand (NZ) that it did not have the same potency as other T4 meds. There were so many people who were hypo on Eltroxin with no relief in sight so here in Australia, they banned it.

The T4 med consists of Thyroxine Sodium which is broken down and converted into T3 by cells as follows:
sodium (2S)
amino-3
hydroxy-3
diiodophenoxy-3
diiodopheny-5

There is truth in the fact that Levo means left but not in the case of brand names for Thyroxin to my knowledge.
The term Levo (in my medical experience) is a term used to describe the left side of something.
For example...LEVO Standing Wheelchair ( a wheelchair that is operated moreso from the left side than the right.

Levo-Dromoran is an opiate but has nothing to do with the left side of anything.It is an Opioid analgesic which inhibits adenylate cyclase, which regulates release of pain neurotransmitters (acetylcholine, dopamine, substance P, and gamma-aminobutyric acid). Also stimulates mu and kappa opioid receptors, altering perception of and emotional response to pain.

So in actual fact..Levo does in most cases mean..Left but not in all cases.
Most times ..the term Levo is a brand name but can sometimes mean left side in medications but not in T4 thyroid medications as they are thyroxin sodium based.

Sorry for writing a book .....

[6hashi]

I found no sence in continuing this argument , so just wanted to add to your knowledge what does levo-thyroxine means(the same holds for L-thyroxine ,EL-troxin ,levo-xyl, LT4) ,please give the following LINKS few moments  :

http://www.blurtit.com/q471477.html
http://www.medterms.com/script/main/art.asp?articlekey=4151

http://www.drugs.com/mtm/dextrothyroxine.html
http://content.karger.com/ProdukteDB/produkte.asp?Doi=181905

you might refer to midle school chemistry book and understand the difference !

good luck,

[Barb135]

Let's all remember that TSH in itself, causes no symptoms and trying to treat by TSH alone is a recipe for disaster.  

I'm another of those who must ignore TSH because mine is always 0.01, but my FT3 and FT4 are both only about mid range.  I feel quite well, but I think if my FT3 could be gotten a bit higher, I might do better.   I'm a "classic example" of one who was treated based on TSH and it was quite a disaster.  My doctor kept lowering my med and I kept getting sicker...........once I found a doctor who would treat both symptoms, FT3 and FT4, I progressed back to health relatively quickly -- within months.

I'd also like to point out that it's not absolutely critical for everyone with thyroid issues to have an endo treat your disease.  It can be a gp, obgyn, any type of doctor who is willing to test properly and treat according to symptoms and FT3/FT4 levels.  There are a lot of people who have posted on this forum who had endo's that treated them even worse than my doctor was treating me........

[goolarra]

I do believe your intentions are good.  However, I am fairly educated (for a layperson) in thyroid issues, and sometimes you confuse ME...the poor newbies!

Synthetics do work for some of us.  T4-only meds work for some.  Some need to add T3 meds (synthetic) to the mix.  Others only feel well on dessicated.  Anyone arguing that point is just plain wrong.  That said...

Our function here IS to educate both from personal experience and from research.  We need to keep everyone on the right track...correcting misconceptions and adding contradictory opinions when we see misinformation being added to threads...they sometimes are read by many people over many years.  I have a couple of "guardian angels" who are all over me if I say something stupid!  And, I appreciate that...I don't want to be spouting garbage.

"he explained to me that levothyroxine is actually left-thyroxine which is 100%  the   active form,where as other naturals contain left and right that your body don't need "

Left and right thyroxine???  That's a new one on me!  Perhaps this is something that was lost in the translation???  Have you ever seen these comments of your doctor's backed up ANYWHERE in print?  T4 is strictly a "storage" form of the thyroid hormones.  No receptors have ever been identified for T4 anywhere in the body.  T4 has to be converted to T3 to be used.  If anything fails in the conversion process (and, believe me, if it CAN, it WILL), then the person is simply going to feel sick until the T3 levels are brought up, and that means adding T3 meds.

Yes, I've been overmedicated low in the ranges, too.  We're all different.  But that overmedication had absolutely nothing to do with my TSH.  I can obviously only tolerate low FT3 and FT4 levels.  That FT4 should be midrange and FT3 in the upper half to third of the range is a GUIDELINE.  It's not going to work for everybody.  However, probably the most common complaint we hear on the forum is from people who are low in the ranges and still symptomatic.  Their doctors stop increasing their meds and tell them that something else must be wrong.  This is what we're fighting.  We need to let people know that just being in range isn't enough.  They're suffering needlessly.

We don't hear a lot from people comfortable lower in the range.  Why not?   I don't think it's because they don't exist.  My theory:  They feel well after most doctors' "standard" treatment...get them into range and forget them.  Not too many doctors push for "higher in the range".  If they do (as was the case with me), we will start hearing from them because being overmedicated is not comfortable.

[6hashi]

Hi ,
Thank you for reminding me ...
It have nothing to do with competetion nor with gimel personaly ,
I just wanted to hear his opinion because in a previous post he contradicted me and said that TSH of 300 is nothing but coma.

The whole objective of my posts is to enlighten the others through the experience I have been through ,the information in the web is very surface ,when I told my endo that synthetic thyroid medication is  not supposed to work because it's synthetic and contain no t3 ,and that I want him to switch me to natural he explained to me that levothyroxine is actually left-thyroxine which is 100%  the   active form,where as other naturals contain left and right that your body don't need ,when I told my endo that I might need to add some T3 because my ft3 is not in the upper third part of the range (where it SHOULD be),it turned out that even with lower than midrange ft3 I was over medicated(thanks to my TSH).
So my objective is to add something that does not exist and might indeed help other newbies who seek advice .

I am sorry if I was understood to be impolite to anyone,I didn't intend that at all ,I just tend to think positively .

Thanks

[goolarra]

There are many men with thyroid disease, but we, ladies, far outnumber them.  Yes, symptoms are the same.  I'd say with all the members we have, fewer than 10 men are active members at the moment (that may be more like fewer than five).

I'd expect your doctor to repeat the tests you've already had...FT4 and TSH.  I'd also strongly request FT3.  T3 is the active form of the thyroid hormones, so the most important of the three tests.  Also, since your symptoms and TSH don't match, it might help to explain things.  I'd also want to have antibody tests so you know the cause of your condition.  If it's autoimmune, it's not going to go away, only get worse.  There are "temporary" forms of thyroiditis, too, so I think you want to look into cause.

He might also send you for a thyroid ultrasound.  This identifies enlargement and nodules (very common, especially with Hashi's).

With those tests, you'll most likely have a very good idea of what's going on and can start treatment if it's required.

[Smilerdeb]

May I remind you that this a SUPPORT FORUM and not a competition.......
This isnt the first time I have noticed posts reffering to gimel.
There are a lot of newbies here who come for advice and not 'competition'.

Sorry...but I say it as I see it.

[Elissa9]

I want information only. My free T4 and T3 are within normal range. My TSH is 7.6..cannot fin anyone with similar tests results. Yes, I feel crummy

[gimel]

It is not unusual for a person that is hypothyroid to have a high TSH, but FT4 and T3 within range.  The high TSH may be indicative of Hashimoto's Thyroiditis.  Two tests may be required to find out:  Thyroid Perosidase antibodies (TPO ab) will show in most cases, or if needed Thyroglobulin antibodies (TG ab).  

Your FT4 and T3 may still be within range, but that doesn't mean you are okay, because  the ranges are far too broad to be functional for many people, due to the erroneous assumptions used to establish those ranges.  

Before further discussion, please tell us about the symptoms you have and also please post the actual test results and reference ranges shown on the lab report for the FT4 and T3 results.  

[Smilerdeb]

QUOTE....Why won't you consider that maybe the reason people can feel good or terrible, independent of their TSH levels is that their free T3 and free T4 levels were adequate for them to be Euthyroid,  and their TSH level was being caused by some other variables. UNQUOTE...

You have a very valid point.
The only time I have looked at my TSH is when the FT3 and FT4 are unstable.
Usually the TSH goes up when the FT3 and FT4 drops a little.
Although this time...the FT3 and FT4 is at good levels with me but the TSH is 7.6 and just been climbing since Xmas.
In this time (as I said) Ft3 and Ft4 is good so I knew something else was going on.
Turned out to be a Pit. gland tumour which I suspected as I felt 'different'.
By different, I mean I didnt have thyroid symptoms except for coldness...I had different symptoms.
Usually if my TSH goes up..I ache like he//, cold all the time, lethargic, bowel issues.
None of this happened this time round.
Sometimes people have to learn to 'recognise' symptoms.

As I said....Ive never gone by my TSH.......mine is always good between 2.3 and 2.5 whereas others are good at 1.0
And its usually my FT3 and FT4 that tells me if I have hyper or hypo symptoms.They either rise or drop.
My Doc has always ignored the TSH so wasnt too concerned at Xmas time when it rose to 3.4....but I told him that 'something else was going on' and he said ..."Deb, you know your body better than anyone. Lets get an Ultrasound and CT scan done.."
He was right and so was I.

My Doc goes by symptoms too...not the TSH.
Gawd if mine was at 1.0, I'd feel like I was dying lol.

[AshO78]

Thanks for all your comments, really appreciate it.

Well these tests were ordered by my OBGYN and after seeing the results she has referred me to a physician. I'm due to see her in a couple of days so lets see what she says.

Any ideas what I should expect? Is this disorder common in men too, with the same symptoms?

[6hashi]

"but since you also claimed that sometimes people with TSH of 100 feel okay, then I don't see how you continue to believe in TSH as a diagnostic"

"Why won't you consider that maybe the reason people can feel good or terrible, independent of their TSH levels is that their free T3 and free T4 levels were adequate for them to be Euthyroid,  and their TSH level was being caused by some other variables."
If you didn't notice ,here FT4 is lower than normal range .
p.s. THe only reason for asking is for all of us to learn .

best wishes !

[gimel]

What I have to say about this is that it is further evidence of the inadequacy of TSH as a diagnostic.  Which is why we keep telling you to basically downplay the importance of TSH, in favor of the actual, biologically active thyroid hormones.  

I can readily agree that people with a TSH of 10 frequently feel terrible, but since you also claimed that sometimes people with TSH of 100 feel okay, then I don't see how you continue to believe in TSH as a diagnostic.  You just shot yourself in the foot.

Why won't you consider that maybe the reason people can feel good or terrible, independent of their TSH levels is that their free T3 and free T4 levels were adequate for them to be Euthyroid,  and their TSH level was being caused by some other variables.  

[ammiagren]

very godd and interesting answer. I just started another thread/question yestarday and also had very logic and interesting answer on it from goolarra. I had such a bad experience with an old endo fart that was TSH obsessed and didn't care for my good t4 and t3 and the petit constitution of my body and how good I felt. He wanted me on levaxine 100 micrograms that imbecill. Not only in scandinavia this happens :)

[Super_sally888]

Target TSH for pregnancy is 0.3 - 2.0.  FT4 should be in the upper half of the reference range.  Great that you feel ok.  But you do need meds to get your levels optimised.  This is critical for a healthy pregnancy and a healthy baby.

Once your levles are ok you should try to get pregnant.  If you do get pregnant you will need to be tested monthly (focusing of keeping FT4 in the upper end of the reference range) and your meds will need to be increased, as they demand for thyroid hormone dramatically increases during pregnancy.

Best wishes

[goolarra]

Yes, if your FT4 is below normal, then you are hypo.  It would be interesting to see your FT3...if it's still at a good level, that might be why to are still asymptomatic.  Also, you might have antibody testing, TPOab and TGab, to see if you have Hashi's, an autoimmune disease that is the most prevalent cause of hypo in the U.S.  Ordinarily, I would say that you might be able to avoid treating this for a while (as long as you remain asymptomatic), but I think a potential pregnancy precludes not treating.

I'd definitely want to pursue this further before conceiving.  Pregnancy can wreak havoc with the best of thyroids, so you really want to know where you're starting from.  FT4 below range could endanger your baby's development.  

Has your doctor suggested treatment or further testing?

[6hashi]

You have Hypothyroidism;under active thyroid ,but you are lucky that you are one of little people who don't feel it, some might feel terrible with TSH of 10 ,even lower, some even with TSH of 100 feel nothing(asymptomatic),regarding treating  it or not ,I suggest that you consult an endocrinologist specailly that you try to have a baby !

p.s. It would be interesting to hear what gimel have to say about this ?!

[AshO78]

Thanks for your response.

Im sorry, I forgot to mention that my FT4 was also test and was found to be 6.69 which is slightly lower than the normal range. What does this mean? Also, what other conditions do you suspect could be going on?

[goolarra]

TSH is a pituitary hormone.  Its a messenger from the pituitary to the thyroid telling the thyroid to produce more thyroid hormones, T3 and T4.  Since it is a pituitary hormone, it can be influenced by any number of factors in the hypothalamus/pituitary/thyroid axis.  Since your TSH is so high and you are asymptomatic, I wouldn't be a bit surprised if something other than a thyroid condition were going on.

The way to find out is to have FT3 and FT4 tested.  These measure the actual thyroid hormone levels in your blood and are much more accurate indicators of thyroid problems than TSH.  Be sure they test FREE T3 and FREE T4, not total T3 and total T4.

Once again, your question on conception depends on what is causing the high TSH.  I agree with your doctor that it would be best to determine the cause of the elevated TSH before becoming pregnant.  Thyroid conditions should be stable before conceiving since pregnancy and childbirth futher tax the thyroid.  Also, insufficient FT3 and FT4 levels can injure fetal development.

FT3 and FT4 testing is the next logical step.  Depending on the results of that, you might need further testing, but those two test will point you in the right direction.

[MoeH]

A TSH that high, yet having no symptoms of hypothyroidism, is indicative of a pituitary tumor, most of which are benign. You'd need to see an endoc to get tested to see if you actually do have a tumor.