My TSH has been suppressed for decades, but I only felt decent with that level of medication. In the past several years I have felt well enough to cut back on Cytomel (this was not easy), but my TSH has continued to drop anyway. On this forum I have seen some say that if the TSH has been suppressed for a long time, it will not come back up. My free T3 and free T4 have always been in the middle range and I have a doctor who treats my whole picture not just my blood test. But I would love to see research about this particular TSH issue if it exists.
IF the TSH is suppressed for many years due to ... - Thyroid UK
IF the TSH is suppressed for many years due to thyroid medication, will it stay suppressed even if you cut back on thyroid meds?
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There are a few studies which I've read. I don't have them to hand. In about half of cases TSH recovers within three months and some more after e.g. six months. Note that recover is defined as TSH returning to its reference interval, not TSH being where you might expect it for a given fT3, fT4. There are also studies that show that TRH in the form of tablets (not generally available) or injected as in a TRH stimulation test can assist the TSH recover.
I'm currently trying to get my TSH to recover (long story) as it's a good time to try as we are in lockdown anyway. I feel pretty grotty, it's been two months on just 75 mcg levothyroxine. I will see how I go for another month or two. If you are interested I suggest you make a diary reminder to pm me in three months time and I will update you on how I'm doing and will by then hopefully have collated my research.
Why do you want to raise your TSH if you feel well??
After many years of hypothyroidism caused by endocrine disruption I managed to overcome it (see my profile for details of my website). I needed supraphysiological doses of L-T3 for a decade and this down-regulated my axis, meaning my TSH remained abnormally low. As a consequence I still need around 55 mcg L-T3 to be OK. If I can get my pituitary to recover my healthy thyroid can take over, the TSH will stimulate it and also stimulate normal rates of T4 to T3 conversion, meaning I will no longer need to take thyoid hormone.
Despite checking your website, I remain unsure how you managed to overcome your endocrine disruption?Also, I'd be interested to know if IBS and Mg deficiency remain (Herings Law indicates they should go first).
I used olestra (no longer available) and then simeticone to eliminate PBDEs. Lipophillic toxins such as PBDEs are eliminated by the liver into the gut via the biliary tract and then reabsorbed. By consuming a non-absorbable lipid you can slowly reduce the toxin burden as the toxin (PBDEs) binds to the lipid and is excreted down the toilet.
I've no idea what Hering's Law is but my IBS resolved within a couple of weeks on starting levothyroxine as did a twitch in my eye (ref. Chovstek sign), It took a lot more hormone to get rid of cognitive impairment until I eliminated the endocrine disruptor.
Perhaps this is too much worrying about the future, but these are my reasons for my wanting to raise the TSH at least some. (I don't think I can get it into the "normal" range and feel human.) I live in California (hope it's OK to post here--you guys know a lot) and it's very hard to find a doctor that will treat to more than the TSH test here (surprisingly) regardless of how bad you feel when the TSH is in range. So I have a wonderful doctor now who looks at the whole clinical picture and prescribes what I need because she doesn't see signs of overmedication (I do need to get a current dexascan though). So I worry that some day she'll retire or something and I won't be able to find another doctor like her. Also, after having had the exact same TSH level of 0.19 for many years, it starting dropping (on the same doses of thyroid meds) to undetectable. So a couple of years ago I slowly, slowly went down on the T3 by 5 mcg. The titrating down was hard, but when I finished, I found that I did feel OK on the lower dose. I did that one more time over the last six months with the same result. So if I can do OK with less, that's good in my book. I may do this one more time with the Cytomel, but beyond a certain point, I don't think I can continue to cut back and have any kind of quality of life. I also worry that if for any reason I become incapacitated and am in the hospital and can't speak for myself, some doctor will come along and just cut my thyroid meds. So I figure while I have my wits about me (I'm not THAT old--68 and in good health), and am able to do this, I should give it a try. But within limits. I know my TSH will still need to be suppressed, but at least if it can be detectable, that is a step closer to what most doctors look for, however wrong they may be. (Life is just easier when your bloodwork fits the standard medical model.) Long answer to a short question.
I can empathise with the way you feel and your fears. I fear exactly the same things. My TSH is very suppressed, about 0.005 and I feel just fine but I come across doctors who insist things change and I have to change doctors. I have had low TSH, very high T4 BUT normal T3 for maybe 15 years or more and I dread coming across a doctor who wants to change things cos I feel so well. I have had a bone scan - an endo felt sure something would be wrong - but I am fine. No overdosing symptoms at all. They say that thyroxine or levo operates at the cell level and no-one can measure that. There are no tests or what is going on at cell level, so doctors should go by how you feel.
I understand your dilemma also. I'm here in the States as well. I have had many doctors & Endos over the years. Most not very helpful. I was diagnosed in 1996 so many years now. I came across a Functional Medicine doctor here in AZ and have been treated by her for the last year and a half. I am on both T3/T4. When I was first introduced to T3 in 2015 my TSH immediately went to .011 (I was only on .10 mcg at the time) and currently it sits at .02(I'm now on 25mcg of T3 and 75 mcg T4). I'm 70 and like you wonder about the future. I have high hopes that some time in the future there will be doctors out there that will actually get it and prescribe accordingly instead of looking at a stupid test that means absolutely nothing (talking about TSH when you are taking T3). We can only hope right? I feel better now than I have for most of those years between 1996 & 2015. I have energy and stamina that I did not have before and am bit lighter in weight too not as much as I'd like but anything is good. Makes me mad I lost so many years not feeling up to par.
I totally hear you!! It took me such a long time to get the diagnosis. I feel fortunate that I've been able to get adequate treatment, but those doctors that do get it are like a needle in a haystack. It takes so long for the medical system to change. But we have to hope that it will. Thanks for your feedback and best to you in health and a happy thyroid.
I have done personal experiment with this. All results history are in my profile.
It possibly depend on what you class as supressed, mine was mostly around the 0.05 region rather than 'undetectable'
And i still think that what i did . which was remove ALL Levo for about a week and a half , had a big stimulating affect on TSH that may not have happened if i was just just lowering dosage slightly.
But it does seem to prove that my TSH was capable of moving upwards to >7 within less than 2 weeks of no Levo after 11 years of what some would class as pretty much supressed.
However my results also do ? seem to show a down shift in my TSH level once it had first gone really low and it doesn't (usually) come back up much whatever my fT4 level was from then on.
Until now ... when for some inexplicable reason my last TSH was nearly 2
Hi,My TSH became suppressed about fourteen years ago, folowing a very large increase of lio. For the first time in many years, I felt completely well. However, for years I had a gp who was absolutely convinced I was over medicated due to my TSH being suppressed. Several years of reduction in levo and lio left me feeling dreadful. Even when my T3 was very low and my T4 mid range, my TSH remained suppressed. It never waivered!
I have done considerable research and there seems to be two distinct schools of thought. One agrees with my gp that TSH must be raised, no matter what - even if it kills you!! From my personal experience that is impossible.
The second is that TSH only becomes suppressed when you reach optimum levels. Nothing can ( or should ) be done to raise TSH. My personal experience supports this view.
I think the only thing that both schools agree on is that there is a difference betweeen having a very low TSH and having a suppressed TSH. They are not the same. A very low TSH can be raised and may be should be, if to do so increases quality of life. Whilst a suppressed TSH means something entirely different.
I am confused as to why you would want to cut back on Cytomel. I assume when you say, " it has not been easy", you mean it has made you unwell or at least not so well.
My TSH hovers around 0.02 and 0.03 - I take 10mcg T3When on levo only it needed to be 0.15-0.25 for me to just about function.
I’d hate to try and reduce my meds, in fact I’ve had to slightly increase my levo in the last 6 months as it almost dropped below range and I felt dreadful.
Many would say my TSH is too low, but I don’t see how I would be able to have even half a life if I was somehow forced to raise it.
Like you and others, I’ll keep reading and also checking my levels to make sure I’m ok.
Perhaps this is too much worrying about the future, but these are my reasons for my wanting to raise the TSH at least some. (I don't think I can get it into the "normal" range and feel human.) I live in California (hope it's OK to post here--you guys know a lot) and it's very hard to find a doctor that will treat to more than the TSH test here (surprisingly) regardless of how bad you feel when the TSH is in range. So I have a wonderful doctor now who looks at the whole clinical picture and prescribes what I need because she doesn't see signs of overmedication (I do need to get a current dexascan though). So I worry that some day she'll retire or something and I won't be able to find another doctor like her. Also, after having had the exact same TSH level of 0.19 for many years, it starting dropping (on the same doses of thyroid meds) to undetectable. So a couple of years ago I slowly, slowly went down on the T3 by 5 mcg. The titrating down was hard, but when I finished, I found that I did feel OK on the lower dose. I did that one more time over the last six months with the same result. So if I can do OK with less, that's good in my book. I may do this one more time with the Cytomel, but beyond a certain point, I don't think I can continue to cut back and have any kind of quality of life. I also worry that if for any reason I become incapacitated and am in the hospital and can't speak for myself, some doctor will come along and just cut my thyroid meds. So I figure while I have my wits about me (I'm not THAT old--68 and in good health), and am able to do this, I should give it a try. But within limits. I know my TSH will still need to be suppressed, but at least if it can be detectable, that is a step closer to what most doctors look for, however wrong they may be. (Life is just easier when your bloodwork fits the standard medical model.) Long answer to a short question.
Oh....I’ve been reading this forum for a few months, and this is the first time I’ve read that maybe TSH shouldn’t get too low.
. Mine dropped to 0.91 on 50mcg levo, but I was on that dose for 10 months.
It then dropped to 0.09 on 75mcg, but I retested a few weeks later and it rose to 0.14.
Free T4 has gone from below range to 40% with FT3 at the same %.
I am considering asking GP to check for Central hypothyroidism- does that fit with these blood results?
If atrial fibrillation and osteoporosis are not the concern GPs think they are should I be concerned with a low TSH?
the 'risks ' of low TSH are all relative , you should do your own research, and make your own mind up how you feel about them 
So ....
If you look at the first reply to this:-healthunlocked.com/thyroidu...
post, (ignore the fact it say's 'more mature')
and click on the links within it , you will find discussions , and a link to evidence that convinced me that it doesn't really present a problem until TSH is below 0.04 and even then , it's all relative.
Thank you. I appreciate the link--and this forum. One's own research on one's own body is the bottom line, but information like this is always helpful.
The low or suppressed TSH is the pain of many that are treated for their thyroid problems. Difficult to assess if your TSH would recover, in many cases it does not and it just makes people quite ill, as they get too little hormones as a result.
Anything outside the 'reference range' seems to 'alert' Health Care Professionals, although it appears that if the TSH is running rampant above the range, this strangely enough is not cause for alarm - otherwise they would start treatment of hypothyroidism in the UK before the TSH hits 10 or above?!There is evidence, that there is a risk of AF or osteoporosis in patients with OVERT hyperthyroidism, but it appears that this is related to a suppressed TSH with elevated T4 and most definitely with elevated T3. However, most GPs extrapolate this to a low or suppressed TSH only in the absence of T4 or T3 elevation - which certainly cannot be concluded, as no such studies have been conducted.
Only one decent publication is looking at the influence of suppressed TSH on osteoporosis / fracture risk through suppressed TSH - Leung et al and they report that there is 1 excess hip fracture for every 1000 patient years in patients with a suppressed TSH.
liebertpub.com/doi/pdf/10.1...
My TSH has been suppressed since I have started replacement treatment nearly 20 years ago. My GP tried to 'tinker' with it a few years ago by reducing the levels from 100mcg daily to 75 mcg and 100 mcg on alternate days. Needless to say that the TSH did not change, but the small reduction quickly made me very ill. Once I increased the dosis to my previous levels and optimised my vitamins and minerals, I was back to my old self again.
One extra hip fracture in 1000 patient years is in my view a small risk for a decent quality of life.
" Only one decent publication is looking at the influence of suppressed TSH on osteoporosis / fracture risk through suppressed TSH -"
I like this one too , don't know if you've seen it academic.oup.com/jcem/artic...
It is on levo treated patients , so even though it doesn't actually record t4/3 level , it's fairly safe to assume that most of them had t4 reasonably within range ,(ish , well at least not at true hyperthyroid levels anyway )
Anyway it is interesting and actually shows some of the risks are greater for TSH above 4 than they are for TSH suppressed, and as you say , No Doctor EVER said "i insist you start Levo right away, as your TSH is 4.01 and i'm really worried about your heart..."
"Our data indicate that patients taking long-term T4 replacement are at greatest risk of cardiovascular disease if they have a serum TSH greater than 4.0 mU/liter.....Patients with a suppressed TSH also had increased risk of cardiovascular events, but not to the same degree......Patients with a high TSH and those with a suppressed TSH were both at increased risk of fracture, although on this occasion the risk of a suppressed TSH was greatest......Interestingly, patients with a serum TSH below the reference range, but not suppressed (0.04–0.4 mU/liter), had no increased risk of cardiovascular disease, dysrhythmias, or fractures. It is unfortunate that we did not have access to serum free T4 concentrations in these patients to ascertain whether they were above or within the laboratory reference range. However, our data indicate that it may be safe for patients to be on a dose of T4 that results in a low serum TSH concentration, as long as it is not suppressed at less than 0.03 mU/liter. Many patients report that they prefer such T4 doses .....In summary, patients on long-term T4 with either an increased serum TSH (>4 mU/liter) or a suppressed TSH (<0.03 mU/liter) have an increased risk of cardiovascular disease, dysrhythmias, and fractures when compared with patients with a TSH within the laboratory reference range. Patients with a low, but not suppressed, TSH (0.04–0.4 mU/liter) had no increased risk of these outcomes in this study. Although most current guidelines do not generally recommend this, it may be safe for patients on T4 to have a low but nonsuppressed TSH concentration."
This is very helpful. Thank you.
I'm sorry you had to go through that. Yes, this seems to be a very common scenario for thyroid patients. I appreciate the information.
No worries, we do have to stick together!
Just a note, I saw that you reduced your dosage and that you feel okay on your lower dosage - that's really great.
One explanation for that could be (and please be assured that I by no means say that you are old! :-), as we get a bit older, our kidney function is not as good as it was in our youth. That means for example, if you take a medication that is mainly excreted through the urine, your kidneys might not be as efficient in eliminating the meds from your system and you may 'accumulate' medication in your body. Hence you would have more meds available than you would have, if your kidneys function normally and it could be an explanation why your TSH could have been naturally creeping down, even if your dosis did not change.
So by slightly reducing your dosage, you may actually have just adjusted for this and are still able to get enough dose to feel okay?
My two pence of science today - if this makes sense!
We do know best how we feel on a particular dose of a medication, we just have to empower ourselves to stick to our guns and make sure we get the treatment that makes us feel well - I know, sometimes easier said than done!
However, there is always risk in life with everything we do, but if the risk-averse actions of the medical profession outweighs the quality of life of their patients, then I would say something has gone really wrong and needs to change!
That is very interesting about the kidneys as we age. That IS a possible explanation. I also started taking a multi mineral around the same time I started titrating down on the Cytomel that is supposed to help thyroid function, though honestly, I have not found supplements to have had that kind of helpful effect on my thyroid. (That product is called ReMyte and it is made by Dr. Caroline Dean--ND and MD. Her ReMag product, btw, has really helped me with chronic migraine headaches and I would recommend it to pretty much anyone. It's good for a variety of issues.)
I am pleasantly surprised that I have been able to do quite well with a 10 mcg reduction in Cytomel (synthetic T3). As I've said before, the titrating down process was slow and painful, but ultimately I could do it.
I appreciate the information and the support. 😻
I take 75mcg t3 at bedtime, i have no signs of over medication, pulse during sleep steady as a rock between 55-65bpm, blood pressure usually 115/70 temp average 35 degrees, i sleep average 7 hours. My GP and endo dont understand it, i should be bouncing off the walls. My tsh usually 0.05 but has been up to 0.5. I am not symptom free but higher dose hasnt changed that, I am prob as good as i will get, compared to 7-8 years ago i was slipping into a coma i have no complaints but I worry that should my Dr decide to, he could make life very uncomfortable for me.
For me of course i worry about osteoporosis or anything else that supressed tsh may do but its quality of life, risk V's reward. Maybe my tsh is supressed as no need for my pituitary to get involved sending tsh signal, i dont have a thyroid so nothing to send signal to! any t3 will supress tsh, never mind the large dose it take. My hubbys best friend is a cardiologist and said more harm was done to my heart under medicated for 5 years than a lifetime of t3 will do but its all a gamble, all medications carry risks. Drs are risk averse but then they are not the ones living half a life like many of us have <3
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