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what is the difference between a supressed tsh and a low tsh
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what is the difference between a supressed tsh and a low tsh

so full of questions today  does anyone know what is the difference between a suppressed tsh and a low tsh- was reading the new research and can t find the difference
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Avatar_f_tn
I use "low TSH" to mean the lower end of the reference range or somewhat below and "suppressed" to mean below range, especially when the result of meds that have a tendancy to drive TSH "artificially" low (T3).  I don't know if there is a widely-accecpted, quantitative definition???  There isn't for anything else that has to do with thyroid!  LOL
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Avatar_m_tn
I'm sure that goolarra is correct that there are no generally accepted definitions for low or suppressed TSH.   I did notice in the article posted by blsdnsvd that the researchers that ran the study used these.  

Suppressed TSH -- TSH less than 0.04
Low TSH -- TSH less than 0.3
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Avatar_n_tn
yes they did and i still don t understand the difference its me i know.  the research says that if its low its ok but not if its supressed or high right?  
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Avatar_n_tn
can t wrap my head around it- how do you tell a five year old what is the difference between low tsh and supressed tsh   there is a difference in the research outcome-  does it mean that if its supressed you are more likely to have heart probs and osteo??  but if its low you re not?
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Avatar_f_tn
I saw that definition in blsdnsvd's post, but had already forgotten where I had read it!  Oops, time for a meds increase!  Thanks, gimel.  I went looking on the internet earlier, but couldn't come up with a definition.

I'm assuming, annamae, (and you know what that does, since I haven't read the actual study) that the authors studied a group with TSH below 0.3 and only detected a significant increase in negative consequences in patients with TSH below 0.04.  But, you're right -  it's a bit of an amorphous concept to discriminate between "low", "very low" and "suppressed"...forget explaining it to a five-year-old!  Some things simply require, "You'll understand when you get older."  LOL

Once again, as with all things that have to do with TSH, 0.04 must be a bit of an arbitrary cutoff.  I'm sure individual differences come into play, and what's more important is FT3 and FT4 levels.  I think we often have to use fairly broad terminology (like upper third of the range, midrange, etc.) so that we don't imply too much precision (i.e. TSH of 0.05 is fine, but TSH of 0.03 is a strict no-no).  I'm feeling like I'm not explaining myself all that well...

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Avatar_n_tn
well i will read and re read your post and get it sooner or later i hope by tues when i have to see my dr who says my labs are normal but my frees are bad and my tsh is high and she is only concerned with that-- so i was going to mention the new tsh study but you know what --- why bother, i just will play the game and say i want more levo i guesssince i have symptoms and felt better a month ago before she decreased my meds because my TSH went too supressed !!!!!!!!   oh mercy im flipping here    thank you for listening  
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Avatar_f_tn
Well, the fact of the matter is that I think TSH ought to be all but ignored in so many cases once we're on thyroid replacement hormones.  TSH is unreliable at best.  FT3 and FT4 are the numbers we really have to look at.  And, of course, if you really want to feel good, symptoms have to be paramount.  So, if you felt better before the decrease, you have "proven" that you need more than you are taking now.  The goal is to feel well, and if you can say, "I felt better before the decrease", then it's a no-brainer to me.

If your frees are "bad", that should be her main concern.  How bad are they?
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Avatar_n_tn
my ft3 went from 444 to 262 and tsh from.01 to 2.5 i will get the ft4 in mail tomorrow. dr app on tuesday. i have decided that if she won t increase the levo- if the ft4 is too low that i will order the levo online and treat myself. i am on 50 m-f and 75 on s&s and t3 lio which i have not been taking because i was afraid that my tsh would go low and she would freak and cut my levo even more- tired of these games and if i have to treat myself i will. i can order my own labs and get levo onlie without a script. im in an hmo and even if she gives me an endo conssult who know if the endo will know what they're doing.  on tuesday i plan to tell her i felt better last lab even though i was .01 and 444 and then i plan to tell her that i have been reading everything and ask her to treat my ft3 and ft4 and see what she says-  what do you think? i value your input so much. i can t go dr shopping because of the hmo constraints--  do you think i could treat myself ?I KNOW WHAT I NEED...i need to get back on the t3 and if the ft4 is on the floor like i feel then i need a coulple of extra days of 75 levo right?
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649848_tn?1357751184
It's very frustrating when your doctor won't treat you according to your symptoms. I would never recommend self treatment though as that can be dangerous.  I don't even know if the levo you would order online is "standardized" like you would get from your pharmacy or not.

I think almost everyone would consider me as having a "suppressed" TSH since I'm sitting at a lowly < 0.03.  However, my FT3 and FT4 are upper 1/3 of range and mid range respectively and I feel better than I have in years.

I totally agree with goolarra that your doctor should be looking at your symptoms first and it shouldn't be too hard to figure out that if you felt better before the decrease, she decreased you too much............what is the lab's reference range on that FT3 since these ranges are lab specific?.  If that were from my lab, it would be out of range, high, which would indicate hyper.

Also, what did your FT4 come back at?  Result, along with reference range.  Why is your doctor prescribing T3 med when your FT3 is already high?
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Avatar_f_tn
I know you can order your own labs online, but are you sure you can get levo without a prescription online???  I don't think you can.

I understand your frustration...I spent my first year on meds basically treating myself... ironically when I knew virtually nothing about thyroid.  However, now that I have a great endo, I have to say that I don't recommend it.

What's the range on your FT3?  I can see that it took a major nosedive, but just wondering where it is in the range now.  How long before these labs did you d/c the Cytomel?  Did you d/c just to "rig" you labs so she wouldn't decrease?  That IS a game that you shouldn't have to play.

I don't know how far your approach will get you (asking to be treated on the basis of FT3 and FT4), but I certainly think you have a right to request it.  You also have a right to be treated in the way that best alleviates your symptoms, and if you felt better before the decrease, that speaks volumes.

You do need to get back on the T3 if you felt better when you were on it.  What was your FT4 before the decrease (with range), and what was your dose before the decrease?

I'd ask for a referral to an endo...what do you have to lose?  You can't do a whole lot WORSE than your current doctor!  
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Avatar_n_tn
my labs in january 09 were tsh  .01 range .40-4.5, ft3 is 444 range 230.420, t4free 1.4 range .8-1.8 i was on 75 levo every day and 12.5 t3.  i did feel hyper. then she decreased to 50 m-f and 75 sat & sun and told me to half the t3- she thought i was taking 25 of the t3. so i stopped taking the t3 since i was feeling hyper on my own didn t tell her that.  my labs for last tuesday were tsh 2.5 and ft3 262 and i will get my ft4 in the mail tomorrow. she said to stay on 50 m-t and 75 s*s and same t3.  i had not been taking the t3. now i have symptoms again and if my ft4 is low i want a slight increase in the levo and i want to take only 5 mcg of the t3- it makes me feel better but i am afraid it will supress my tsh and she will cut my levo down again.  so i have to quit the t3 2 weeks before the draw so my tsh is not real low.  its craazy.  i must need the t3 because it dropped from 444 to 262
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Avatar_n_tn
my ft3 went from 444 to 262 high is 420    i will research the levo online thanks for the fyi
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Avatar_f_tn
Of course, the problem with manipulating your labs to fool your doctor is that now WE don't know what your FT3 would look like if you had kept taking the T3.  I think you have to tell her you stopped taking it, or your labs are going to look really whacky to her and confuse the heck out of her.  

Okay, so in January, your FT4 looked good...maybe even a tad high, but nothing to be concerned about.  On 12.5 mcg (which the doctor thought was 25 mcg???...I had forgotten about that...she really put you on 25 mcg???) your FT3 was over the top and you were understandably feeling hyper.  So, it seems clear to me that she should have left your T4 alone and decreased your T3 enough to relieve your hyper symptoms and get FT3 back in range.  I think your idea of decreasing to 5 mcg is very reasonable.  If you get 5 mcg tablets, you could always go up to 7.5 mcg by splitting if the 5 doesn't do it for you.

So, how to deal with this now???  You're right it is crazy to have to go through this to get what you, yourself, know you need.  I'd point out the January labs.  FT4 was just fine, FT3 was over the top (on half the dose she had prescribed - yikes!), which (dare I say this???)  suppressed your TSH to 0.01.  So, it's clear that all that was really necessary back then was to lower T3 meds a little, which would have brought FT3 back into line and brought your TSH up a little, too, most likely.

Unfortunately, if you don't tell her you quit the T3 before the labs, she's going to want to increase your T3 "back" to 25 (which you never really took) to get your FT3 back up.  Oh my, what a mess!  I think you have to either talk her into treating you by symptoms and FT3 and FT4 (kind of allowing you to treat yourself with her supervision) or get her to refer you.  This is madness.  I'd take the chance on the referral and hope you get someone you can work WITH.  It's no fun to have to con your doctor.
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Avatar_n_tn
(dare I say this???)  suppressed your TSH to 0.01.  got the best laugh thanks i needed it. i'll let you know what happens tuesday.  all you say is wise. i think i'll just tell her i felt better before the decrease and then she will know that i feel better "lower" and then i can just take the t3 how i feel i need it-  or if i get any resistance i will request an endo consult.  i will tell her about ft3 & ft4 and t3 meds supressing tsh too - anyway i know what i need and im going to get it one way or another. not going to stay sick with symptoms even if i have to treat myself. and yes can get levo online without a script btw.   thanks for being there!!  
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Avatar_f_tn
OMG, I just got online looking at what you can buy without a prescription...frightening.  I'm terrified of what I'm going to be getting in my inbox after googling that.  This can't be legal.  I had an online drug company harassing me for months...they called 10+ times a day, often two or three times within a half hour, wanting me to buy my anxiety meds from them (I don't take anxiety meds).  NOTHING turned them off.  I finally had to buy a phone that was capable of blocking calls, and that stopped them.

Quick look, but prices seemed high, and they obviously don't take insurance.  The cheaper prices seemed to be for Eltroxin, even though they called it Synthroid or Levoxyl.

Best of luck with your appointment...be tough...let us know how it goes.  
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Avatar_f_tn
Just be upfront with the Doc with the opening line....."I know your not gonna like this but".......

To try and fool a Doctor is unwise.
Be prepared and say exactly what you have done.
Only way to go........
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Avatar_f_tn
The difference between a SUPPRESSED TSH and a LOW TSH is:

Suppressed is med induced to keep TSH low.
Low TSH is just that...low.

Thats the medical terms for it.
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649848_tn?1357751184
Deb, are you saying that suppressed is intentionally med induced?  

I'm thinking of my own, what *I* would call suppressed because it's way below the range (< 0.03) but yet it's med induced; not intentionally, but has to stay there in order for my FT's to stay where I need them.  
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Avatar_f_tn
Yes Barb...according to the Austalian Medical Association...suppressed means 'intentionally' suppressed by medications.
Suppressed is not bad Barb...if its needed then meds is the way its done.

Just as people are kept in med induced comas.........(I know its a different thing completely but just giving an example).
They are kept in med induced comas usually to allow the brain swelling to go down.

Suppressed TSH in your case is to keep your FT3/4 at a level good for you.

Hope that clears it up.
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649848_tn?1357751184
Thanks Deb -- you *did* clear that up and I'm really glad to have you say it's not a bad thing, because every time someone tries to get my TSH up, they send me to hypo he//.  I promised my endo that only HE and I will decide about my thyroid med(s).  

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Avatar_f_tn
There are many medical cases where certain 'levels' are kept 'suppressed ' by meds.
This is so that other organs can function and perform normally or as close to normal.
In thyroid cases...TSH is suppressed to try and stop recurring cancer...just as your TSH is suppressed to keep your levels at a comfortable state.
Its not a bad thing...far from it.

Sometimes its a neccessity.....for quality of life in the medical world.
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Avatar_n_tn
deb- but there is a distinction in the new study that implies that a supressed tsh did not fare as well as a low tsh right? ie heart disease, osteoporosis etc
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Avatar_m_tn
I have a hard time accepting that particular part of the study.  I just don't get the logic to there being a difference in the effects of a low vs. a suppressed TSH, by their definitions.  To be convinced I'd have to see the actual data from the study and understand it myself.  It may have been one of those studies where the result from being suppressed was not conclusively different, so to cover themselves, they are just saying there could be a difference, and it is yet to be verified.  By the way I've had a suppressed level of TSH for over 25 years as a result of taking a full daily replacement amount of thyroid med.
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Avatar_n_tn
well i will search for the data because it is very important- btw thank you for the article you sent me. saw my dr yesterday and it went well. she agreed to treat the ft4 & the ft3-symptoms and i feel like we are on the same page.  glad you're doing well.  o a;sp read something on dr lowe s site about the danger of overly supressed tsh and he is a strong advocate of t3 meds. if you want the link i will send it to you but you are probably familar with it..
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Avatar_n_tn
interesting page http://www.drlowe.com/jcl/comentry/t3dangerous.htm    actually he talks about the complications of overly suppressed tsh not the dangers- sorry i used the wrong word
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Avatar_m_tn
Yes, please send me the link and save me the time searching for it.  I have read a lot of Dr. Lowe's info and find him to be very helpful.  Don't remember anything about suppressed TSH right now.

I really believe the concern for osteoporosis and heart issues related to suppressed TSH is overstated.  As far as osteo, I have seen several studies that showed no effect on pre or post menopausal women (the most susceptible group), unless they already had conditions for osteo.  In that case thyroid meds at any dosage that speeds up metabolism, would speed up the bone loss process.  But the way to avoid that problem is to eliminate the cause for bone loss in the first place, not withhold thyroid meds.  

In either case, since TSH correlates so poorly, I would much rather be guided by symptoms and the levels of the Frees, than by TSH level.  After all, it's not the absence of a pituitary hormone (TSH) that has any detrimental effect on body functions.  TSH is just a mediocre indicator of the levels of the active thyroid hormones (FT3 and FT4) that largely regulate metabolism and many other body functions.  So why not rely more heavily on symptoms and blood tests for the Frees?

Here is a quote from a lot of thyroid related material from Dr. Lindner.

Toft advocated “TSH normalization” in the past but has changed his tune (BMJ edit. 2003) “The other difficulty in interpreting serum TSH concentrations is to decide what value should be aimed for in patients taking thyroxine replacement. It is not sufficient to satisfy the recommendations of the American Thyroid Association by simply restoring both serum T4 and TSH concentrations to normal, as in our experience most patients feel well only with a dose resulting in a high normal free T4 and low normal TSH concentration, and those patients with continuing symptoms despite “adequate” doses of thyroxine may be slightly under­replaced. Some patients achieve a sense of wellbeing only if free T4 is slightly elevated and TSH low or undetectable. The evidence that this exogenous form of subclinical hyperthyroidism is harmful is lacking in comparison to the endogenous variety associated with nodular goitre, and it is not unreasonable to allow these patients to take a higher dose if T3 is unequivocally normal.” BMJ


And here is another quote from a study.

CONCLUSIONS: This study suggests that at slightly suppressing TSH doses, LT4 therapy has no adverse effects on BMD in both pre- and postmenopausal women, while having an efficacy on nodule size comparable with that reported using an LT4 schedule able to maintain TSH near or below the assay sensitivity limit (.005).


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Avatar_n_tn
have searched everywhere and can t find it- i re read all of dr lowe again and then went back to the endocrine today blog thought it was there.  i thought it was before the discussion of ali and fraiser and the thyrolar but just can t locate it. in essence he was saying that he is a strong advocate of t3 but not but not to the extent that it will cause over suppression of tsh and thereby effect medical complications. well i linked that with the new aace study and started getting nervous because i am on t3.  oh well will keep looking---
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Avatar_f_tn
This is just my personal opinion.......

There are studies that "claim this and claim that" and they are just that....Studies.
With Graves disease and hyperthyroid the TSH is commonly low (before any permanant treatment) and it is NOT the TSH that causes the risk of Thyroid Storm (Atrial fibrillation)...it is the HIGH FT3 and FT4. Im hyperthyroidism, the TSH is brought UP to bring the FT3/4 DOWN.
So in actual fact,,,it is the thyroid hormones that cause the more risk than the TSH itself.


There has also been a lot of studies done in regards to Hashi's and Graves.....
With Graves...a risk of heart damage and osteoarthritis.
This is due to a HIGH FT3/FT4 once again and also the heart working overtime to compensation for the high hormone levels.

With Hashi...there is a risk of Myexedema Coma but this isnt because of just the TSH being high...it is because the rest of the organs in the body are not getting enough FT3/FT4 to allow them to function.

So my attitude is.......regardless of WHERE your TSH is....if your FT3 and FT4 levels are within a range comfortable to you, not causing any organ problems then suppressing the TSH has no real danger in itself.

You can have someone with a TSH of 10.0 that is functioning great, FT3/4 levels great and no other problems...but in another case, you can have someone with a TSH of 0.50 and the same scenario of FT3/4 being ideal levels and they do great.

I tend to think that a lot of Doctors associate TSH with the thyroid and although this is correct as the TSH is a Pituitory Hormone and NOT a thyroid hormone (message from Pit. Gland to tell you that thyroid needs more/less hormones)....Docs tend to go by TSH alone which is actual fact is wrong.

In my particular case, I have a heart murmur, prolapse of Mitral & Tricuspid valves (heart) and Tachycardia and also thyroid cancer.

So in reality, I should have my TSH suppressed (med induced) because of the thyroid cancer (RAI and TT done 2008) down to 0.50 but would end up with a heart attack ( Myocardial infarction) as the heart is working faster and too much stress on the heart.

I had a heart attack in 1994 and it was never picked up that my thyroid and Graves disease may have been the reason why.As we all know...untreated hyperthyroidism causes the FT3/4 to soar way past the normal levels.
My first diagnosis showed my FT3 to be at 22.3 and the ranges are : 3.5 -5.0.

So in my personal opinion, it is NOT the TSH that is the important hormone for wellness...that hormone should come secondary.

As in a couple of months ago...my FT3/4 was great and my TSH kept rising.
It wasnt the Pit. Gland telling me that I needed more thyroid hormone, it was the Pit. Gland going into 'overdrive' because of a Pit. tumour.

My attitude to it all is ....Each to their own.
Not one of us has the same DNA, molecular biochemisty  and each case should be treated individually.

But...if you told a Doctor this , his mouth would drop to the floor ......with him thinking...:What the He//????"

As I said....my personal opinion on this.
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Avatar_f_tn
Sorry..posting was supposed to read...HAD thyroid cancer. Now clear of it with permanant treatment in 2008.
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649848_tn?1357751184
I agree 100% with Deb -- I did some research (gimel, you sent me some good info a while back) into the theory that suppressed TSH causes osteoporosis because this is what my doctor was telling me and he wanted to keep lowering my med to bring my TSH up, but my FT's were just barely in range, so I was being kept hypo.  

I'll have to look for it again, but this is a controversial subject right now and most of the data points to it not being the lack of TSH that causes the problems, it's excess T3.

As in my case, with my FT's now being good and only a very few, mild symptoms, I would fight tooth and nail to keep from having my meds dropped at this point, regardless of the fact that my TSH is basically nonexistent.  Fortunately, my endo agrees with me, even though he also realizes that this is controversial yet, so I no longer have to beg to keep my med at the level needed.
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Avatar_f_tn
As I said Barb...this is my own personal opinion and I have researched a lot over the past 3 years.
There is a lot of controversy over the TSH but I do base my opinions on what I have seen here with others and my own personal dealings with the TSH.

I may be totally wrong but until I find out different, this is what I believe.
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Avatar_m_tn
I totally agree with you about not being concerned about a low TSH caused by meds sufficient to relieve symptoms.  As an example.my TSH has been less than .05 for over 25 years.  in my opinion the absence of a pituitary hormone (TSH)  cannot possibly be the causal factor for the potential problems brought up so often by the doctors.  The absence of TSH is nothing more than the hypothalamus/pituitary response to T4 and T3 levels.  If there were a potential problem,  wouldn't it would be evident by the presence of excessive levels of the active thyroid hormones, FT3 and FT4, and by symptoms?  When there are no hyper symptoms evident, and FT3 and FT4 are within their reference ranges, yet TSH is suppressed, where is the problem?

In my prior post I quoted studies only to convey to Annamae that there is scientific data that supports my biased opinion.  Maybe some day the medical community will get over the "Immaculate TSH Belief", and start emphasizing the actual, biologically active thyroid hormones, and new reference ranges for them, as well.
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649848_tn?1357751184
Well, I think  I can say that I have found one doctor who has gotten over the TSH belief; that's my endo.  Although there are some things about him that I'm not crazy about, I will give him the utmost credit for doing all the relevant testing *every* time AND I just saw him this morning and he's not the least bit concerned about my suppressed TSH - even wrote new scripts to enable me to keep my thyroid levels where they are, which will also keep my TSH where it's at..........

In view of that --- I'd also like to say thanks to all you guys and gals, who have helped me with research, test values, and everything else to get where I'm at..............THANKS.
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Avatar_f_tn
gimel thanks for this thread, it was just what I needed...smart women w/moxy and info! I feel less alone, which is 1/2 the battle for wellness, I think. Could you all tell me the link to read the TSH study you discussed? Also, annamae, I'm new to this, but my intuition about my own body tells me this: I needed more T3 in the beginning, then after a year my body started working better (see my post from yesterday" Low TSH....." for my experience) and I became hyper. I cut the T3 in 1/2, to 12.5, felt awful w/hypo symptoms, added 25 mcg. to the 50mcg T4 I was already taking and felt better again. Initially T4 didn't work for me by itself, seems like it needed T3 for it to kick in. But now my body seems to need the gentler version. Also, my acupuncturist suggested I have my Vit. D level checked. My Dr. told me it was unnecessary, but finally gave in. Bingo! had practically none in my system. Started taking 1000 units, felt better right away. I think it's synergistic w/ thyroid, protects bones...just my personal opinion based on how I feel. When I altered my thyroid meds, the Vit D level went down w/out changing the dose, so now I doubled it to 2000 units (which I read is the new recommendation anyway) and am taking it simultaneously w/ thyroid meds in am. Anybody else have an opinion on Vit D??
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Avatar_m_tn
This is a link to that info.  Personally I'd have to see the actual study data before I could accept that there is a significantly different effect between what they call low TSH and suppressed TSH.  At any rate, it is a significant step forward that someone in the medical community has done such a large scale study and refuted the old belief that TSH suppressed to even the lower end within the range was enough for them to be alarmed.

The last time I went to an Endo, he took one look at my TSH of .04, I think it was, and immediately said I had to reduce my throid meds, even though I was still having some hypo symptoms.  So we parted ways very quickly.  I always thought it was very revealing that about half of the patients in his waiting room  (apparently hypo patients) were snoozing.  LOL  

http://www.sciencedaily.com/releases/2010/03/100315230910.htm
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Avatar_f_tn
Thanks again...will read, at least it gives me something to come to my primary doctor with that will help to argue with the Endo. I too would have to read the data to care about the low v. suppressed argument, but am looking for info that low-range TSH isn't going to have a deleterious effect as long as the Free T3 and Free T4 are normal :-D
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Avatar_f_tn
My attitude has always been that 'if you feel unwell' then you most probably are.....for the simple fact that YOU know your body better than any Doc/Endo/Surgeon.

Most times I have been right on this and even my own Doc who has worked with me on my thyroid issues says the same.
He says.."Debs, if you dont feel right then you are probably right" and then one by one we eliminate the symptoms and tests to get to the bottom of it all.

Ive had this Doc for over 25 years....hes a year older than me and open to anything I sugggest.
he also has the attitude that I may not always be right in my way of thinking but am very rarely wrong.
I doubted what I was able to do and had no confidence after the 'bashing' that Graves gave me.
I call him my Lifesaver.

He was the one who encouraged me to do my med endorsed Div. 2 Nursing.
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Avatar_f_tn
I agree with you, Deb.  WE don't even really need bloodwork, because WE know how WE feel...at least we do once we've been at this thyroid game for a while.  It's our doctors who need the bloodwork because it's the only way they can "get inside our bodies" and see what's going on.  But, it's no replacement for the "real" thing (feeling the symptoms).  Your symptoms will tell you everything...you just have to be a bit cautious about interpreting those that can "cross over".
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Avatar_m_tn
Just ran across an article written by a doctor that I have communicated with in the past and was favorably impressed with his knowledge and approach to treating thyroid patients.  His comments on TSH were very interesting and I thought would be a worthy addition to this thread.  

The doctor was speaking with a patient who was concerned that a low TSH was a dangerous condition that indicated too much medication and was a potential cause of bone loss.  This doctor stated that the reverse was true, that a test result that showed a TSH greater than zero was an indication the the body was still asking for some thyroid hormone. I thought this was a very interesting thought --that the body is still asking for some thyroid hormone, rather than the interpretation we've all heard -- that a suppressed TSH says the body has too much TSH.  

He also said, "Fortunately, doses less than 120 mg (2 grains) per day of Armour Thyroid (equivalent doses would be 200 mcg/day Synthroid/Levoxyl (T4) or 50 mcg/day Cytomel (T3)) have been studied long term and do not cause any long-term side effects, not even osteoporosis. In fact, those taking thyroid had thicker bones than those patients not on medication!13  Doses greater than that have not been studied, so to be safe, we will need to do annual bone density screening if we go higher than 120 mg/day. "

http://www.thyroid-info.com/articles/woliner.htm
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Avatar_f_tn
So what do you think of my doses Gimel lol .
I am on T4 as follows:

Week 1 = 62,5mcg 4 x week and 50mcg 3 x week
Week 2 = 62,5mc x 3 week and 50mcg 4 x week.

I have gone up the thyroid ladder to 75mcg daily and wham! bad HYPER
Then went to 62,5 mcg daily and again..by 4th week...HYPER.
So now I do it the way as posted above and am fine.

Disregard my TSH that went to over 7.0 because of the Pit, Tumour (now removed).

Doc agrees with my dosing and Cardio says I know thyroid inside out and also heart issues too and to continue the good work lol.

I cant have my TSH lower than 2.3 or I get A fib.

Personally I think it is being undiagnosed for many years...as Docs traced back my thyroid issues to 1985 yet was only dx in 2007.

That is basically the reason I have mitral and triscuspis valve prolapses....from  the heart overworking for too may years.

I guess I am on one of the lowest levels of T4 compared to others and feel great too.
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Avatar_m_tn
How much do you charge your doctors as a consulting fee?  LOL

My TSH has been less than .05 for over 25 years, in order to get my thyroid hormone levels high enough to relieve most symptoms.  Obviously our TSH results show pretty clearly the fallacy of the "Immaculate TSH Belief".  By the way, I'm curious as to what are your FT3 and Ft4 levels that work so well for you.
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Avatar_f_tn
My FT4 is usually around 17.0  (10.0 - 19.0)
My FT# is usually around 4.6 (3,0 - 5,5)

Anyone looking at the FT3 level would say it is too low but any higher and I get the same thing...HYPER and h/rate around 140-160,

TSH is always good between 2.3 -2.5 (0,5 - 4.0)

I have no aches and pains, I have no hypo/hyper symptoms at these levels and I have no thyroid lol.

Bear in mindd though that I have had a murmur since birth and also suffered with Bradycarda and Tachycardia.

My FT4 when first diagnosed in 2007 was around 29,9 and my FT3 was around 33,0.

So since these levesl are good for me,.....I tend to stick to them.
Doc says super high drug sensitivity so goes along with what I do.

Sometime I may get hyper symptoms so I cut back on 12.mcg in that week and the levels stay the same.

I call it weird lol but am happy with my levels.

Umm I dont see my Doc as much for thyroid as I used to ...he says I have it down to a 'fine art' lol.

I have never taken T3 (as I dont need it ) and had every test possible.

But I must add that prior to RAI...I was so sick I wanted to die.

I got my life back....one of the lucky ones.

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Avatar_n_tn
deb or anyone who can answer--you say that if your tsh is under 2.5 or so you will go into a-fib, well why does your tsh influence your heart symptoms. i thought that the frees t3 & t4 were that major active thyroid hormones that impact our symptoms- and that tsh was an antiquated guess test only an indicator at best of thyroid function.  what am i missing here please educate me....    
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Avatar_m_tn
I.m sure that Deb will give you her take later, but I think the answer is that TSH does not influence heart symptoms directly.  It is primarily FT3 and secondarily FT4 that affect metabolism and most other body functions.  When FT3 and FT4 are optimal for Deb, her hypothalamus/pituitary system apparently regulates her TSH into the 2.3-2.5 range.  Other members report widely different TSH levels when their FT3 and FT4 are in the same range as Deb's.  For example, mine is less than .05.  The TSH level is only the hypothalamus/pituitary response to the body's perceived levels of T3 and T4 in the blood.  As such, TSH is clearly only a fair indicator and it does not correlate well at all with hypo symptoms.  That's why so many members emphasize FT3 and FT4 levels and symptoms, instead of TSH.
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Avatar_f_tn
Its not the TSH that puts me into A fib...its the FT3 being higher than it should.
When the FT3 is too high for me, obviously the TSH goes down.
What I really meant by my posting is...if my FT3 goes up, my TSH reacts almost immediately and goes lower.

Sorry for the confusion...it is the FT3 that causes the heart issues with me.
If my TSH drops, my FT3 has usually gone up and I say USUALLY because I had good stable levels for quite a while and then my TSH just kept rising.
After 3 months (I had a feeling what was wrong) as I had a higher than usual TSH, a good FT3 but no HYPO symptoms from the TSH going higher.
It turned out to be a Pit. Tumour.

annamae.....prior to RAI , I was obsessive in getting well.
I researched all I could and found that regardless of what was 'right' for everyone else was not right for me.
I also discovered that what was right for me, was crap for others.
Since I got my levels right with 'tweaking my meds' with my Doc, I am not as obsessive as I know what to do should hiccups arise.

I used to take everything that I read on the net as 'gospel' when in actual fact...not all of it is.
Everyone has different molecular cells and DNA which means our bodies all react differently to different symptoms, hormones and levels.

I researched what was best for ME.
I can give advice on what I know but that doesnt mean I am right.
I can tell my story like everyone else here but what I did may not work for them.
The main thing to remember is...keep your options open.

All my TSH told me was :
1. I had a Pit. Tumour
2. If it was too high, I would ache and my FT3/4 would be a fraction too low.

But I have also had high TSH and normal Ft3/4.

The thyroid is a very complex organ.

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Avatar_n_tn
thank you for your responses. i am understanding more and more every day. have been sick for so long and i feel like i am frantically searching for wellness. i don t want to waste any more time of my life feeling sick. it is such a long journey but i am so grateful to have all of you on this board and i read everyting -  thank you
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Avatar_m_tn
wherer can you get levo without a scrip? My doc's got me brain fogged and doesnt seem to care.
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Avatar_m_tn
In the U. S., thyroid medication such as T4 meds, or desiccated natural thyroid meds, are available only by prescription.  If you will please post your thyroid test results and their reference ranges shown on the lab report, members can assess the adequacy of your testing and treatment.  Also, if you will tell us your location, perhaps a member can recommend a good thyroid doctor for you.
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Avatar_m_tn
thank you so kindly for your reply.i'm working on getting med records now.I live in manteca,ca area.
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Avatar_m_tn
I have accumulated a list of doctors recommended by other members, but the closest one for you would be in Fresno.
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Avatar_m_tn
8/16/11 -.112mg levo for 3 mos approx. tested- tsh .18 ref.-.4-4.5 ,
t4 free- 1.2 ref.- .8-1.8 .  3/12/12- still on .112 levo.(tried some kelp pills) tested- tsh 2.42 ref -.4-4.5 , t4 free- 1.1 ref.- .8-1.8. brain fogged still.
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Avatar_m_tn
The main thing to be learned from your test results is that your testing is inadequate.  TSH is a pituitary hormone that is affected by so many variables that at best it is only an indicator to be considered along with more important indicators such as symptoms, and also levels of the biologically active thyroid hormones, Free T3 and Free T4.  Of these Free T3 is the most important because it largely regulates metabolism and many other body functions.  Scientific studies have also shown that Free T3 correlated best with hypo symptoms while Free T4 and TSH did not correlate at all.  So an important question for you is what other symptoms do you have besides brain fog?

From your limited tests, seeing that the TSH increased from 8/16 to 3/12 made me wonder if you have been tested for thyroid antibodies that are related to Hashimoto's Thyroiditis.  With Hashi's the autoimmune system produces antibodies that attack and eventually destroy the thyroid gland.  Along the way, natural thyroid hormone production decreases, requiring gradually increasing amounts of thyroid meds.  The two tests for Hashi's are TPO ab and TG ab.  Those tests should be done.

Even though your Free T4 is within the so-called "normal" range that does not mean that all is okay.  Your Free T4 is below the middle of the range.  In itself that is not a problem, as long as there is adequate Free T4 to be converted to T3, which is what is used by the cells of your body, and also as long as your body is adequately converting the T4 to T3.  The best way to know is to always test for Free T3 and free T4, along with TSH, each time you go in for tests.  If the doctor resists testing for Free T3, then you should insist on it and don't take no for an answer.  Many of our members, myself included, report that Symptom relief for them required that Free T3 was adjusted into the upper third of its range and Free T4 adjusted to around the middle of its range.  

When you go back for more testing I also suggest that you should be tested for Vitamin A, D, B12, and ferritin.  If your Free T3 test shows that you have poor conversion of T4 of T3, then I would also suggest extending the testing to zinc and selenium.

As test results are available, be aware that results that fall just in the low end of the ranges does not mean that all is well.  If you will post results from the recommended tests, members will be gland to help interpret and advise further.  
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Avatar_m_tn
Again, thank you so very much for these clues.
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Avatar_m_tn
Hmmmm. I just realized when the other doc lowered my levo dose he also prescribed 4000mg per day of fish oil.Today when looking at ingredients on the back of a vitamin A jar, it says-'soy bean oil'.I just researched fish oil caps a little(they look similar) and am reading that they usually contain soy oi as well.If I'm not misstaken, soy products should be avoided by people taking levo.Maybe thats partly why I felt like I was on my way back to hypoland.
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