Why is totally suppressed TSH only for post thy... - Thyroid UK

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Why is totally suppressed TSH only for post thyroid cancer patients

jjf255 profile image
44 Replies

If this question has been asked before...sorry, I missed it. I know that Drs often times want post thyroid cancer patients to have a suppressed TSH to keep cancer from returning. If suppressed TSH keeps it from returning, why wouldn't one want it suppressed to keep thyroid cancer from starting? I just read a LONG article written by Dr. Jeffery Dach titled...TSH Suppression Benefits. He mentioned that some Drs. used suppressed TSH to shrink nodules. As I mentioned...the article was long and a bit of a snoozer in parts. He did go into the misinformation that many Drs state as fact, that suppressed TSH leads to osteoporosis.

Has anyone read any other articles on this subject?

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humanbean profile image
humanbean

When the thyroid is removed because of cancer it is possible that some thyroid cells get left behind and they might be cancerous or become cancerous in the future. If that thyroid tissue was allowed to try and produce hormone it might start growing and turn cancerous. By suppressing the TSH any thyroid cells are not stimulated to produce thyroid hormone, thus reducing the risk of stimulating any cancer cells within the thyroid cells that remain.

jjf255 profile image
jjf255 in reply to humanbean

Yes, I do understand that. What I am wondering is if TSH is suppressed in non cancer patients who are at higher risk for developing thyroid cancer...would the suppression keep cancer from starting. Dr. Jeffrey Dach mentioned that some Drs have had success shrinking nodules by suppressing TSH. I do know nodules are often times noncancerous. I am just wondering about benefits of suppressed TSH. We only hear about the assumption that suppressed TSH is always bad.

greygoose profile image
greygoose

Um… not sure you've quite understood, there. The suppressed TSH is not directly linked to stopping the cancer returning, it's to stop any thyroid tissue that might be left from regrowing - which, of course, would mean the cancer regrowing. So, a suppressed TSH wouldn't stop you from getting cancer in the first place.

That said, if a patient needs a suppressed TSH to feel well, there's no reason why she shouldn't keep it suppressed. It is said that a suppressed TSH is desirable in Hashi's, to reduce the 'hyper' swings - although others deny that. But the idea that a suppressed TSH leads to osteoporosis and heart problems has been proved over and over again to be false. But, that's what doctors learnt in med school. And anything they learnt in med school is sacred. You can't tell them otherwise. So, they continue to torture patients by keeping their TSH in-range, no matter what the actual thyroid hormone levels may be. :'(

jjf255 profile image
jjf255 in reply to greygoose

I think I just found the medical paper that answers my question. Its a LONG paper (aren't they all) in The Journal of Clinical Endocrinology and Metabolism.

titled...Serum TSH and Risk of papillary Thyroid Cancer in Nodular Thyroid Disease.

jjf255 profile image
jjf255 in reply to jjf255

Sorry...I hit "send" too quickly. The paper states that indeed this hypothesis about suppressed TSH to treat precancerous thyroid nodules indeed is being studied. There is so much more to this paper for those interested in reading it.

greygoose profile image
greygoose in reply to jjf255

OK, well, that's more complicated. If you have a thyroid disease and nodules, then keeping the TSH suppressed could have possible benefits. But, the way you said it, it sounded as if you wanted the whole population to have a suppressed TSH to prevent cancer. :)

shaws profile image
shawsAdministrator in reply to jjf255

If you want to amend anything you've posted, you can edit by pressing the down arrow 'more' on your comment and select edit to change/alter anything you wish.

academic.oup.com/jcem/artic...

As far as I know it is the mainstream medicine consensus that tsh suppression should be avoided, perhaps in response to papers like the above. I have been reading up on this. It has been suggested to me that papers like this have only looked at tsh and not T4/T3 levels, which could be an issue(?). Websites such as Jeffrey Dach seem to cherry pick the data they present, why not just give a balanced overview of the known literature/data that is available? He mentions low tsh is ok, but omitted that the same study noted an increased risk of heart and bone issues with suppressed tsh (<0.03) For this reason I tend to trust my doctor, at least she doesn’t have an agenda and will discuss evidence with an unbiased view.

BB001 profile image
BB001 in reply to

My experience supports the papers that say the link between suppressed TSH and oesteoporosis is flawed.

I have been treated with thyroxine between 1989 and 2015 (When I switched to NDT). During this time I was dosed so my TSH was suppressed.

The important point is that I have had 2 DEXA scans, 7 years apart. Both show excellent bone density, which is significantly above average for my age.

Thus my experience supports the researchers that say the original study that linked suppressed TSH and oesteoporosis is flawed.

TSH is not a good measure of how much thyroid hormone is being absorbed by the body, it merely measures the Pituitary gland's response to how much T4 is in the blood. What is important is 'how much thyroid hormone is being absorbed' by the body.

Taking the phrase 'TSH is merely a response to how much T4 is in the blood'...T4 in the blood is high if it is not being converted to T3. If it is not being converted to T3 (the active hormone) the body's ability to metabolise nutrients is impaired and the body is unable to process the nutrients from the diet to maintain health, one effect of which is oesteoporosis (because calcium, vitamin D and magnesium etc are not processed correctly to build/repair bones).

I can see why a suppressed TSH is important for cancer patients to ensure any remaining thyroid cells are prevented from producing thyroid hormones and thereby being at risk of becoming cancerous.

I have now had 5 blood tests over the last year that have shown my fT3 and fT4 are in range, however my TSH has remained suppressed.

I therefore argue that it is the measure of fT3 that is important not TSH.

Personally, I aim to keep my fT3 in range and I ignore the TSH result.

Thus I argue that totally suppressed TSH shouldn't only be for post thyroid cancer patients...

I've just added the following for clarification:

...because it is not the TSH level that it is important, it's the fT3 and fT4 levels.

in reply to BB001

Of course you are entitled to your own opinions and are free to make you own choices, based on your own experiences and knowledge. I was just stating facts as I see them! (Aside from my trust that my GP has no agenda!) I’m just naturally sceptical and like to look at evidence for myself and make an effort to understand it without letting personal opinion and beliefs get in the way. I appreciate I am at risk of flawed thinking and confirmation bias as well as anyone else and try and make an effort to recognise this. I just take offence at people like Jeffrey Dach who cherry pick information they present in articles... it makes me think there is some kind of underlying agenda... and oh yes on further googling he does have a private practice which would attract people who are dissatisfied with mainstream medicine. I am not saying there is no place for this in society as I think there is. I am also not saying that I agree with every mainstream medical practice as there is a vast amount of uncertainty and unknown and a need for further research in many areas. The supressed TSH is harmless or bad view is also likely to be a false dichotomy.

BB001 profile image
BB001 in reply to

My reply was to say my experience seems to be at odds with GPs' training and the established view that suppressed TSH causes oesteoporosis.

in reply to BB001

This approach may be right for you. You have to follow your intuition when there’s no research available guide decisions. You’re right of course there are numerous factors at play in developing osteoporosis. My main gripe is at those people who manipulate information, sorry if I seemed to be ranting!

alchemilla12 profile image
alchemilla12 in reply to

with all due respect -you think your GP doesnt have an agenda? I think that is a luxury that generalists like Gps dont have.Their agenda is the information of basic protocols provide by such as NICE / big pharma telling doctors what to prescribe and the surgeries own agenda re costs and prescribing. Gps dont have time to read all the current research on every disease

in reply to alchemilla12

Well...I don’t think she has any motivation other than trying to help me. She not making money off me that’s for sure!

alchemilla12 profile image
alchemilla12 in reply to

of course she isnt making money but what I am saying is her desire to help you and therefore her " agenda " as you call it is moderated by a variety of restraints that I outlined so she is shackled to a certain degree between what she may want to do for you on a person to person level and what she is allowed to do

in reply to alchemilla12

That is true

jjf255 profile image
jjf255

Sorry if I have confused by mentioning a paper by Jeffery Dach MD and then referring to a paper by The Clinical Endocrinology and Metabolism Society ( All MDs) This paper is in reference to an in depth study being done by Endocrinologists. I am always open to what is being researched and just found this to be very interesting. As an intelligent person, I do my own research, knowing that not all doctors do theirs. I do not believe "mainstream" is always the best way. I will always be my best advocate armed with the knowledge that I have acquired.

in reply to jjf255

I know where you are coming from! Of course not all doctors will be up to date with all literature, how could they be! I do my own research, but it’s not easy (well in my opinion!) I think it should be for the individual to weigh up the pros and cons of their treatment. If I can take HRT, for example and accept an increased risk of breast cancer to make me feel better, why can’t I suppress my TSH if I accept the risks in order to feel better. I suppose it’s a case of assessing the risks for myself and this is where there seems to be divided opinion and it’s not easy to find a reasoned overview of literature!

in reply to

I use HRT as an example as my GP presented me with lovely tables of evidence with easy to understand risks v benefits... if only that could exist for thyroid treatment 😂

Tina_Maria profile image
Tina_Maria in reply to

And who is to say that the suppressed TSH is a true reflection of what's going on in a patient with thyroid disease? The TSH range was established in people WITHOUT thyroid disease and gives a range of 'normal' TSH values in the population.

However in thyroid disease, is the feedback loop still working like in a person without thyroid disease? I doubt that very much. Also, if you supplement with exogenous T4, the pituitary will sense this and will probably immediately shut down the TSH production - well its not needed is it?!

Furthermore, when GPs say that if the TSH is suppressed and that patients need to reduce their T4 (even when fT4 and fT3 are within the normal range!), the TSH might not come up, as you are still supplementing with T4. The only result will be that you now have less T4 available and it will make you miserable. If the TSH would really reflect 'healthy' or 'normal' T4 supply, it would respond more to accommodate for the sudden deficit. But again, this link is probably broken like our thyroid and the only consequence will be that following this advice will make us ill!!

cabro2 profile image
cabro2

Just for information. Low TSH in and of itself does not lead to heart and bone issues. It is the elevated levels of free T4 and/or free T3 (hyper) that are required to drive down TSH to levels like .1 or .006 that cause issues. Do some reading on bone remodeling and then do a search for “hyperthyroid and osteoporosis.” You will find that hyperthyroid levels causes bone resorption to outpace bone formation, leading to bone loss. This can be reversed in some, but I am too far past menopause (estrogen plays a role). I had a heart attack when I had both free T3 and free T4 that were actually too high for me during suppression. I shouldn’t be here. I had symptoms that weren’t taken seriously enough. I now monitor my frees closely so I don’t get palpitations or elevated blood pressure, since my levels have now been moderated. Being hyper and suppressed is very difficult for a good percentage of thyroid cancer patients. I am one of many. It is an unnatural state. I’m 8.6 years post TT for cancer and 8 years post-RAI for recurrence. Osteoporosis and heart issues are not the only negatives for being hyper with suppressed TSH. Ask a thyroid cancer patient.

in reply to cabro2

I am sorry you have been through this, I have read also that things may change in future towards a more individualised treatment weighing risks v benefits in each person with thyroid cancer. My GP tells me the risks are observed in clinical practice hence the caution regarding TSH, which seems at odds with the popular opinion on here that there are no risks.

in reply to

I had my TT three years ago I monitor my BP and keep my Vitamin D levels optimal to ensure that I never get osteoporosis I also walk the dogs up hills and do weight lifting and exercise at home. I am 72 years old and have no problems.

cabro2 profile image
cabro2 in reply to

Thank you for your kindness. Genetic research and deiodinase research are two areas of strong interest to me for change and improvement in future treatment protocols and choices.

in reply to cabro2

I wonder if they have a study on steroid use, surgical menopause, thyroid cancer and bone health. I think family history and steroids is a bigger player in bone health.

diogenes profile image
diogenesRemembering

Whilst it was thought for quite a long time that you need to suppress TSH to prevent regrowth of cancer cells, modern thinking at least in Germany has challenged this, and I believe TSH suppression is no longer routinely done. I think some work was done to prospectively see what effects not suppressing TSH had on cancer recurrence and no bad outcome was reported. I'll ask around for any relevant papers.

helvella profile image
helvellaAdministratorThyroid UK in reply to diogenes

If it were the case that TSH is such an important player in thyroid cancer, might it not be regarded as a bad thing to see people stuck on TSH levels approaching 10.0 before any medication is offered?

Also, does the specific form of thyroid cancer make any difference with respect to TSH suppression?

diogenes profile image
diogenesRemembering in reply to helvella

Treatment of thyroid disease is compartmentalised I regret. One rule for one sort, another rule for another. Little logic to be found overall.

cabro2 profile image
cabro2 in reply to helvella

Medullary Thyroid Cancer treatment does not respond to or require TSH suppression. In the US, stages 2 and above of Papillary and all variants, plus follicular and any advanced disease still require varying degrees of suppression. Certain aggressive variants of Papillary need suppression for stage 1, as well.

cabro2 profile image
cabro2 in reply to helvella

Yes, TSH approaching 10.0 is unhealthy, whether there is cancer or not and is specifically contraindicated if there is any history of thyroid cancer.

in reply to helvella

I often wonder about high TSH and thyroid cancer and in my case the highest my TSH was 3.0 and bounced all over but never above 3...I bet I had undiagnosed Hashimoto disease.

diogenes profile image
diogenesRemembering

Found a paper that goes somewhere towards questioning TSH suppression in cancer patients.

Thyroid Vol. 25, No. 3

Thyrotropin Suppression Increases the Risk of Osteoporosis Without Decreasing Recurrence in ATA Low- and Intermediate-Risk Patients with Differentiated Thyroid Carcinoma

Laura Y. Wang, Andrew W. Smith, Frank L. Palmer, R. Michael Tuttle, Azhar Mahrous, Iain J. Nixon, Snehal G. Patel, Ian Ganly, James A. Fagin, and Laura Boucai

Published Online:9 Mar 2015 doi.org/10.1089/thy.2014.0287

Abstract

Background: Levothyroxine suppression of thyrotropin (TSH) is broadly applied to patients with thyroid cancer despite lack of consensus on the optimal TSH concentration necessary to reduce cancer recurrence while minimizing toxicity from subclinical hyperthyroidism. The objectives of this study were to examine the beneficial effects and the cardiac and skeletal toxicity of TSH suppression in well-differentiated thyroid carcinoma (DTC).

Methods: A total of 771 patients (569 women) at ATA low or intermediate risk of recurrence, with a mean age of 48±14 years, and undergoing total thyroidectomy at a tertiary care center between 2000 and 2006 were followed for a median of six and a half years. They were divided into a suppressed TSH group (median TSH ≤0.4 mIU/L) and a nonsuppressed group (median TSH >0.4 mIU/L). Structural recurrence of thyroid cancer, postoperative atrial fibrillation (AF), and osteoporosis were examined in the two groups. Osteoporosis was only examined in women.

Results: A total of 43/771 (5.6%) patients recurred, 29/739 (3.9%) patients were diagnosed with postoperative osteoporosis, and 17/756 (2.3 %) were diagnosed with postoperative AF. Despite similar rates of recurrence (HR 1.02, p=0.956 [CI 0.54–1.91]), patients treated to a median TSH ≤0.4 mIU/L were at increased postoperative risk of a composite outcome of AF and osteoporosis (HR 2.1, p=0.05 [CI 1.001–4.3]) compared to those not suppressed. A differential risk of AF alone (HR 0.78, p=0.63 [CI 0.3–2.1]) was not detected, but postoperative osteoporosis was increased among women with a suppressed TSH compared to those not suppressed (HR 3.5, p=0.023 [CI 1.2–10.2]). The increased risk of postoperative osteoporosis disappeared when the patient's median TSH was maintained around 1 mIU/L.

Conclusion: TSH suppression significantly increases the risk of postoperative osteoporosis without changing tumor recurrence in ATA low- and intermediate-risk patients with DTC. Future interventions should focus on avoiding harm in indolent disease.

Minimol profile image
Minimol in reply to diogenes

Am I reading that correctly? Only 3.9% of the study developed osteoporosis. Isn’t that less than the worldwide average?

diogenes profile image
diogenesRemembering in reply to Minimol

You are talking about overall lifelong probability of OP. In this study the rise of OP incidence is only followed for 6 years. No doubt after many more years more OP would arise but not through TSH suppression necessarily. Lifelong OP owing to all reasons is different from OP specifically arising in this ovr a short period.

Minimol profile image
Minimol in reply to diogenes

Yes understood Diogenes but even so, osteoporosis diagnosis of less than 4% in a group aged between (48-14+6) 40 and (48+14+6) 68 years old, largely females, doesn’t seem to be so high in a comparative prevalence of 1/3 of total population worldwide.

diogenes profile image
diogenesRemembering in reply to Minimol

You've got to look at the distribution of years. If it's 48 +/- 14 years for example, the distribution will be concentrated on the average, with smaller and smaller numbers diverging from the average, the further away they are. So, statistically you are looking mainly at 48 yr olds +/- say 4 years, plus smaller numbers either side. Its not a straight-line distribution with equal numbers 34 and 62.

Minimol profile image
Minimol in reply to diogenes

Should we also look at T3 levels?

in reply to diogenes

I'm not buying that suppressed TSH causes osteoporosis maybe in some it does but not everyone.

diogenes profile image
diogenesRemembering in reply to

You are right!

Hi jjf255, I had thyroid cancer and was kept for a while with a suppressed TSH until I was given a bone scan that revealed mild osteopenia and now my doctors keep taking medication away from me ....I was told your going to die from heart disease and your bones are going to crumble if we don't lower your meds because of mild osteopenia.....buts its ok if I get cancer again... it's insanity medical that I don't get either and its not true lower TSH does not cause osteopenia at least in my case I was diagnoised in Aug 2010 with mild osteopenia and I had a thyroid and was on no thyroid medication..

bahai-dot-org profile image
bahai-dot-org

Thank you so much for sharing this. I have very low TSH and this will be good to share with my doctor.

Trigger88 profile image
Trigger88

You shouldn't have a TSH reading if you don't have a Thyroid. It is or should only be able to be read if there is growth or they didn't get it all. They should be focussing on T4 T3 & improving your health.

Trigger88 profile image
Trigger88

Hi There,

The Thyroid seems to be a big problem for the medical profession. It is a constant experiment. It also creates a lot of business for them. I had my Thyroid removed in 2011. The next 4 years were hell. I consulted several Doctors and natural therapists and got no real answers. Then I started researching and have actually healed myself.I have written a book about my recovery. I haven't published it yet. However, I would be happy to send you some of my manuscript for your edification and feedback. If you send me a direct email address I will send it to you.

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crabapple

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