My new endocrinologist in a routine appointment just before Christmas casually mentioned "your osteoporosis". Turns out I have "very brittle bones" as a result of being over-replaced with T3. I asked two and a half years ago to have the dose reduced and some Levo to replace it. Having been stable for a few years I didn't worry about not having my usual annual appointments nor about not having the DEXA scans. What a mistake! In that time I have gone from non-concerning osteopoenia to this. I have never tried to manipulate my test results by delaying when I take my medication on the day of the blood tests. So my advice is this: be absolutely honest if you are taking T3 without your doctors' knowledge and make sure your blood test results are accurate so you don't put yourself at this risk. I have now said goodbye to horse-riding, ice-skating and ski-ing, leisure activities I can do without though sadly. I can no longer take my darling dog for long walks through the woods for fear of slipping on mud and I am going to be affected by not cycling because I live out in a rural area and it's a 2 mile walk each way to the shops! We so have to be responsible for our own health and not rely on the doctors.
Wishing you all improved health and much happiness in 2025
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thyr01d
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Im 77 and play tennis several times a week; started this year with T3 due to fogginess and appreciate that improvement. Haven’t had a bone scan in a few years, but last time my density increased significantly from osteopenia to healthy.
At the time my doctor attributed it to the tennis, D3 (with K) and my HRT, mostly testosterone at the time. Was not using T3 then.
I'm so sorry this has happened to you. I have a Dr's appointment on Tuesday to ask if I am eligible for a dexa scan for this reason. I've been on high t3 dose for about 10 years, it runs in the family and I'm now post menopause. Having read posts on here has made me make the appointment. I will go private if they refuse.
Yes, I was shocked how inexpensive they were when I checked going private. Think for speed I'll likely just pay as imagine nhs is months of waiting, and that's if I qualify I hope you don't have to give up all the things you love. You sound really active so I imagine you'll find the right activities and exercise you enjoy
Thanks, and thanks to your post and replies from members, as I know about REMS scans. A mobile scan is in my area in April just 10 mins away with availability. If not eligible for nhs DEXA, I will book that or book one as well.Osteoporosis is always at the back of my mind as I have risk factors that don't even include thyroid issues.
You've had lots of positive replies that must put your mind a little more at rest.
Please please don't be overly concerned regarding recently finding out about having Osteoporosis. Do you have any Dexa Scan results to share? Can you share your Dexa Scan results..Because I have severe Osteoporosis and Multiple Spine fractures **all Spine fractures are non traumatic** e.g. my latest one 3 Months ago was caused by simply sneezing....I am a Member of the Royal Osteoporosis Society website and other Osteoporosis Groups. The best things you can do in my opinion is to take Vitamin D, Magnesium, K2/MK7 K2/MK4, Boron in Particular....Walking will help to strengthen your bones, Unfortunately I can't because of the pain from Multiple Spine fractures. HRT will also help to strengthen your bones. However, the safest HRT is the bioidentical type = ultrogeston gel, and/or patches. If you have a ....Womb you Definitely need progesterone as well as oestrogen ..Incidentally I was recently doing some Research about Osteoporosis *as I frequently do' and it appears to be that over 21 Million Females in the United States have Osteoporosis from being over medicated with Thyroid drugs....the gist of the study was 'overmedicated suppressed TSH, high ft4/ft3 xx
Good to hear boron getting a mention as I've recently added that in... perhaps a little edit needed on the Body Identical Oestrogel = Oestrogen and Utrogestan = Progesterone
Thank you Thyb very much for such a positive reply. I asked the Consultant if I could try vitamin D calcium etc but she said my bones are too bad for it to work - I am going to try though, I have faith in our bodies' ability to heal. I can't share results because they still have not been uploaded, will chase Surgery once they can't use the 'backlog from Christmas' excuse. I don't have a womb (cancer age 34) but you might be interested to know that we do need progesterone as well, that's a fairly recent finding. I walk a lot (dog designed to run up to 120 km per day!!) and apparently it's best to walk on uneven ground. By good fortune designed for my students a yoga programme specially for osteoporosis incorporating all the different bone demands required (ie rotating, bending etc). You have cheered me, thanks again.
I've been using it for 18 months (so 6 months before I can have another Dexa) after hearing great things about it and scientifically proven to encourage bone growth, there are a few of us 'users' here 😬
I absolutely agree it isn't just your womb that needs progesterone, so crazy to leave people without and upset the balance.
I'm a keen cross country stomper, I swapped to Barefoot shoes/ boots for extra grip and to really give my feet a workout and more percussion to rattle my osteopenic hips... loving them and much stronger ankles these days... I'm just off to deliver a trial of HRT to my yoga teacher who keeps getting told she is too young at 46!... but is so symptomatic it makes her instructions hilarious as you never quite know which body part she is going to replace with another, honestly it's like a drunken game of twister if you tried to follow some of her directions 😂
Hi TiggerMe and thank you for the suggestion of bone balance, which Bertwills also suggested, I will take a look. Your Yoga class sounds good fun. Does your teacher know that the Bow pose is said to postpone the menopause well into old age and could well help if she's symptomatic?
That's intriguing! How on earth does that alter your hormone output?? I shall certainly mention it..... tbh she was delighted to receive some HRT to trial so I'm guessing yoga alone isn't cutting the mustard!
Yoga does all sorts of unexpected things. I trained in UK and India and learned a huge amount from medical doctors including an excellent one (Selvarajan Yesudian). When people are trained to be Yoga teachers now it's like teaching in a school, almost learning by rote, but the trainers often don't know just how much they haven't discovered themselves so we now have loads of Yoga teachers who don't even know their training only covered the absolute basics and there there is far, far more to learn. It's a shame because so many Yoga teachers have such good hearts and good intentions and would seek out the teachings if they knew they existed and where to find them. Sorry, it's close to my heart, as you can tell!
What is meant by "all spine fractures are non traumatic"? Does it mean they can happen under the least exertion? Because I would say all my seven wedge fractures caused trauma. I can't do much walking, and when I do, I use two sticks; I can get around quite quickly with those.
I had an early menopause and it was progesterone that I was short of, so that was the only HRT I took. I was diagnosed with an underactive thyroid but my GP got it wrong, so I don't take anything for that. My GP was so certain she had got the diagnosis right that she said without thyroid drugs I wouldn't last the year. That was about three years ago.
hi Maggie, yes, non traumatic' meant I didn't have a fall...e.g. the 1st happened just while carrying 2 sshopping bags, 2nd whilst just standing/sitting for hours waiting in A n E, 3rd whilst squatting to take a cup out of the dishwasher, 4th just sitting by the hob cooking/frying chops etc etc most recent one happened just while sneezing When you said all your 7 wedge fractures caused trauma, do you mean you had falls/fragility fractures? Do you know if your fractures have healed. MRI or CT Scan usually shows if they're healed, if there's a white line where your vertebrae have fractured they're still not healed.....Do you have TSH ft4 ft3 RT3 Vitamin D, Ferritin, Folate, B12, iron panel results?
Hi Thyb, That's what I thought. I've heard of them happening with a sneeze, but most of mine happened similar to yours, though mostly lifting heavy items or bending. My first one (T4) happened when I fell on my bottom. My last fracture at the other end of the thorax has caused me to be bent over, but I am feeling strong, and am about to have my second Denosumab injection this month. I haven't had any x-rays since last February, after the 7th fracture and the doctor in A & E is unable to recognise any new fractures, and says "it's muscular - there are no new fractures". But then he tells me all the fractures I've got and there's a new one. I am not due to have a DEXA scan at the moment, so I'm in limbo, but being 80 years old, it's a reasonable assumption that I have osteoporosis. I don't have TSH results but I think I have all the others you mention, and my haematologist keeps an eye on those. So no, I don't know for certain that they have healed, but I suspect they have - so long as I don't get too blase about it, because that's when the 8th might happen. And all of them were traumatic for me. Some people don't get any pain, but I'm not one of them; I wish.
I'm sorry to hear you have osteoporosis. But this is all too vague to act as a warning. And might scare some people unnecessarily.
So, how much T3 were you taking? What do you call being over-replaced? Are you going by blood test results? Or symptoms? Was your FT3 over-range? Or are you just going by a low TSH?
I have never tried to manipulate my test results by delaying when I take my medication on the day of the blood tests.
What exactly do you mean by that? How many hours do you leave between your last dose of T3 and the blood draw? If you take it before the blood draw then you are going to have a false high FT3. We advise leaving a gap of 8 to 12 hours but that is not manipulation. That gives you your normal circulating level of T3. If you have the blood draw too soon after taking it, all you are going to test is the dose you just took, which is not in the least bit helpful. You need to know your true normal levels because osteoporosis can be caused by too little FT3, as well.
I really think we need more details to know exactly what is going on.
I thought the same as you regarding time of dose to blood draw. Could be low t3 which might have been cause.Either of these scenarios are what I worry about
Hi Greygoose, thanks for your kind and thoughtful reply. If I have time I will look up my test results for you but if you are interested although they are no longer relevant as now my T3 has been reduced. I am going by blood test results and I call over-replaced having so much that my TSH was very, very low. I leave the hours requested by the Consultant between last dose and blood draw, a bit over 12 hours. Thinks that covers all your questions.
If you are taking T3 your TSH is going to be low, that is a given. It does not mean you're over-medicated on T3. You should never dose by the TSH, it is the FT3 that is the most important number. And I think everyone reading this post is interested in knowing what that was.
Thank you for adding that! With even a little T3, TSH can be very low, She mentioned that she had her womb removed at age 34. If there was never any oestrogen replacement that is a huge risk factor for Osteoporosis.
'She' did have some hrt at the time of the hysterectomy but not for long. Thing is though, that was 34 years ago and my bones were okay about 5 years ago. I have used natural oestrogen and progesterone cream because the GP would only prescribe oestrogen alone which gives me 'morning sickness' and depression.
When I can get the test results I will gladly post but as mentioned elsewhere the surgery I am with is very difficult. 5 months on from the appointment with the endo I have only just started receiving prescriptions for the correct tablets, they were prescribing 10 mcg unsplittable and undissolvable in place of 5 mcg. The surgery didn't notify me of the DEXA scan results nor put them on my records and that was done months ago. I am used to a low TSH, I've been on T3 only for years, but something's changed in the last few years.
Certainly not high enough to be a problem. But seems the OP believes that low TSH causes osteoporosis and heart problems - which, of course, it doesn't.
Dear Greygoose, I have long read with interest your helpful posts on here and don't want to get into an argument with you, however, please could you note that I don't 'believe low TSH causes osteoporosis and heart problems'. I don't think I have written such a thing but if I have could you point me to it so I can edit?
Sorry Greygoose, I didn't post my history because it's available for anyone interested and I didn't want to make a long post. I haven't been taking only 10 mcg T3 for the past few months, I have been taking higher dose of T3 for many years. For the past months I have been taking both Levothyroxine and T3, but the low TSH precedes the addition of Levo. My guess, and it's only a guess, is that something has changed, my diet or some other thing and my body stopped needing so much T3 but as I was not monitored the falling TSH was not noticed. From memory I think since starting T3 my TSH has been 0.0something, but not of concern. The concern now has been triggered not by the TSH results but by the DEXA scan. Hope this helps clarify without excess info.
I appreciate that you didn't want to make the post too long. But you cannot make a bald statement like that - Turns out I have "very brittle bones" as a result of being over-replaced with T3. - without people asking questions and wanting all the details. It's a very serious matter so we want to understand why you think this and if there's any possibility of it being true
As you possibly know, I'm on T3 only and have had a suppressed TSH for many years. I have been taking 75 mcg T3 for about ten years, and before that even more. So, of course I feel concerned.
It's not about getting into an argument but the question one always asks is: how much is too much. And if it's not me that asks it it's going to be someone else.
Having gathered as much information as I can I have to say I sincerely doubt that your osteoporosis was caused by over-medication with T3, and I'm relieved for all of us. Of course our needs change - our bodies change - but not to that extent. You would have too take an awful lot of T3 for a long period for it to cause osteoporosis - it doesn't happen over-night. And, as others have said, there are many possible causes of osteoporosis. So making that bald statement is obviously going to cause a riot. We have to be very careful what we say.
Ah, now that I knew, one of the first clinical audits I carried out for the NHS was looking into bone improvement when treated with calcium and various other minerals etc. It was the group taking vitamin D who had the most notable improvement, not much change with calcium only.
Thank you SlowDragon, I will look at the links when I have time but oddly wondered about iron deficiency yesterday. I am not anaemic but ferritin is always near the bottom of the range, even when on prescribed ferrous fumarate. Thank you for caring and taking the trouble to send the links.
Unfortunately T3 is badly understood by medics as well as by patients.
It is not a dangerous treatment so long as it is used correctly!
It is a bioidentical hormone that replaces what the body cannot provide
This lack of understanding has led to many misconceptions which have been the genesis of scaremongering tales about T3
I'm very sorry that you find yourself with this trauma ...but I find this post verging on scaremongering principally because it relys more on assumption than on verifiable facts
My main reasons for this are these -
You don't tell us how much T3 you were taking, or for how long....or how much levo was involved
Were you taking T3-only, if so both TSH and FT4 would be very low....perhaps less so if on T4/T3 combo. FT3 would be relatively high
What proof do you have that you were overreplaced with T3...or is T3 just a convenient peg to hang your osteoporosis on.
You don't mention any symptoms that you experienced
There are no results shown from Full Thyroid Tests.
I take my medication on the day of the blood tests.
Well, for a start that would give a misleading and innacurate result, causing the FT3 to be temporarily elevated until it settled in the system, and therefore suggesting overmedication. T3 should be taken 12 hours before a test and with T4... 24 hours before.
I agree we must be honest with our doctors, they cannot hope to treat us correctly if results are skewed by an unknown dose. They should also know to ask the correct questions and to notice anomalies in test results.
Hyperthyroidism (an overactive thyroid gland) is a cause of osteoporosis Were you diagnosed and treated as being hyperthyroid?
That isn't clear.
Hypothyroidism (an underactive thyroid gland) is a common cause of bone disease
Were you diagnosed as being hypothyroid?
Lack of available T3 can cause osteoporosis.... not just too much. Might you have had undertreated hypothyroidism for a long time.
This partly negative post may scare people off using T3 which can be life enhancing for some and for others, like me, essential to life.
I need high dose T3 to function, I have to self medicate but my GPs know exactly what I'm doing and leave me in control of my medication. Had I read your post without understanding T3 then I may have been too afraid to use, it with serious consequences.
Also, my medics were never going to treat me with the high dose I need so as you say, We so have to be responsible for our own health and not rely on the doctors
We have to learn the facts about the medications we take not just listen to heresay.
T3 is key!
Wishing you well, it is hard having to give up activities you enjoy.....ɓeen but there for other reasons!
DD, you're in the same boat as me regarding this.I obviously don't know if i have issues yet, but if I did would years of low cellular t3 before being medicated or high dose of t3 but not getting into the cells be my cause?
For me I have a big risk factors. Family history, had very low vit d for years, my level was just 9 when first tested nearly 20 years ago, now post menopause and then either years of low cellular t3 or taking high t3 doses for last 10 years.
I am on full hrt and I do strength train and weight bear now as both can help and prevent osteoporosis.
I don't really like my chances now I've wrote this all down.
I am sorry but I have a full life and don't want to take time out to look back at all my results to provide them. I wasn't trying to scaremonger it's just that I have seen people urging others to stop taking their T3 long before testing and I believe it's important to follow our doctors' advice because they interpret results on the assumption we are doing. My problem is mainly that my original consultant left and I was not passed on to anyone else, I didn't realise this had happened. I then changed surgeries twice (house moves) so the GPs weren't monitoring and then the Consultant I saw was a locum who left and my GP is also a locum who seems disinterested. As a consequence, and I don't blame anyone, I should have been more alert, I haven't had the necessary DEXA scans nor TFT checks and I'm really just trying to help people be aware of this pitfall.
You also need to consider wether you have other autoimmune diseases, Hashimotos, Hyperparathyroidism, coeliac disease, IBS, Pernicious anaemia can all cause osteoporosis.
How does an endo know that your osteoporosis was caused by T3? T3 gets blamed for all sorts of things and I think it is often straightforward prejudice.
Who is to say that your osteoporosis is not due to low levels of vitamin K2 or vitamin D or calcium or magnesium or potassium or boron or zinc? Or a diet too low in protein?
But no - doctors blame the T3.
Personally, I think that people who have thyroid disease of any kind that was undiagnosed and untreated for many years could end up with osteoporosis. And this happens to so many of us.
Well, I suppose they can't be sure but I was fine a few years ago but then my TSH was not so law, the osteoporosis has come at the same time as the TSH has fallen very low while not being monitored. As said above, I don't blame the medics for this, I just want to warn people of what can possibly happen if we don't keep on top of our treatment.
Just my two penneth and of course we're all going to have an opinion on this but doctors tend to always conflate low TSH with being hyperthyroid, they just cant seem to get their heads around the fact that as long as our frees are in range then a low or suppressed TSH when on thyroid meds is just what happens to many of us.
I've had extremely low TSH on just Levo, NDT and combi therapy. But my frees have, on average always been well within range. And its high frees that can cause potential complications, not low TSH.
Osteoporosiscan have many causes, undiagnosed hypothyroid for one, many of us have ended up waiting years to get diagnosed, menopause, diet, low activity levels, genetics or just bad luck. Even if you'd never used T3 you could still have got osteo.
It seems to me T3 is just a convenient scapegoat and that doctors who dont understand it or dont approve of it love to blame it.
I’m undiagnosed with a thyroid issue so far but have all the symptoms. I do have a diagnosis since 1979 when I was 17 of Adult Onset Stills Disease which for me manifests as rheumatoid disease and is autoimmune.
I took steroids until my mid 20s. No preventative treatment or action, maybe it was an unknown risk from steroids at that time.
In my late 30s I had a full medical check including dexa scan when starting a new job. This revealed osteopenia so I started training with low weights for about three years at least twice a week often more.
I’m early 60s now and hope this will have helped to restore bone density. My joints have become too painful to train since my early 50s as a result of my rheumatoid condition but no sign of bone trouble atm
I have no aches or pains except for a croaky voice but I am getting over a flu bug 3 weeks and counting now I am starting to wonder if it is a new strain of Covid
Hi Stills and thanks for your reply. Luckily just a few years ago I designed a Yoga programme based on the latest discoveries around osteoporosis but I will consider your suggestion of weights.
I would love to be able to do yoga, I took a 12 week course in Hatha (?) yoga but was unable to tolerate the weight bearing exercises on the wrists which were excruciating for me oddly considering I USED to be able to do free weight lifting classes. Wishing you good days.
Oh yes, a lot of us are like that, a good Yoga teacher will give you alternatives. If your wrists are not too bad just making a fist and putting your knuckles and first finger joints on the mat instead of a flat hand can make you comfortable. If bad you can slightly amend the pose, for instance go down onto forearms instead of hands and use something like blocks or a coffee table so you have the correct height. Good luck.
You obviously know your stuff as that’s exactly what the teacher suggested but alas it was still too painful so now I’m trying to swim twice a week and would you believe it…. The water hurts my wrists 😆
Ah yes, DippyDame, that sounds like me. I was on Levothyroxine for years and felt terrible then was given T3 in the hospital and honestly improved straight away. By the time I had driven home the abdominal pain I had had for years had gone completely. I think what's tricky is finding the balance, getting the amount of replacement hormone right when it's influenced by so many other things.
When I went for a private bone scan I chose a REMS scan not DEXA. REMS isn’t offered at all on the NHS but it gives more information. It gives information on bone strength as well as density. So if you’re a petite person your bones will naturally be less dense but may be strong . The DEXA may be interpreted as you having low bone density because the ranges are applied bluntly (a bit like TSH levels). So it’s important to know bone strength as well as density.
I did the the REMS scan too. It gave me some reassurance that my bones are strong despite the density being in the osteopenia range as shown on DEXA. I was also pleased with how much advice I was given during the appointment with links to further information for me to research and implement. The DEXA just gives you your results and then no interpretation. I felt The REMS appointment was well worth the money for the consultation as well as the strength measurement.
Thank you FairtradeT this is a really helpful reply. It would be very reassuring if a REMS scan were to show strong bones. I am short but not petite. Your nice message with helpful information has cheered me up, thank you again
I too had a REMS scan 18 months ago, because I was so worried about the apparently serious results of a DEXA 7 years before. It showed that the DEXA had been inaccurate, and that my bones are strong despite now being just in the range for osteoporosis. The very helpful orthopaedic surgeon, who carries out the tests, explained that because I am very slim with small bones they would normally show as being osteoporotic after menopause, but they were not about to crumble, as I had feared. He told me that I should be aware of what I eat, take certain supplements, and keep up with exercises. I was so relived that afterwards I walked for over an hour along Brighton beach in the rain and didn't worry about falling over! In fact I had fallen a couple of times a few years before and wondered then why I hadn't broken any bones if they were supposed to be so fragile.
You can find details of the REMS scan by searching for Osteoscan uk. Do take a look at the page entitled "Are you at risk from impaired bone health?". There are many causes of osteoporosis and I think it was unhelpful of your endocrinologist to blame T3 as he did. Please don't worry, especially if you don't know the actual results of your DEXA. You may have osteoporosis, but it isn't always the end of all exercise!
REMS seem to show what is going on better in cases where DEXA results are unusual or differ widely between areas, as mine had done. In the case of an accurate DEXA then they should confirm the results, but have the advantage of also showing how fragile/strong the bones actually are, as opposed to just how thin they are. That's important for people who have been told that their DEXA scores are awful and that their bones are therefore so fragile that they are about to collapse, and that all sport, walking etc. should stop. It is also useful for women with small bones who are currently assessed in the same way as women with larger bones. I also think they can be useful for anyone who just wants to keep a check on what's going on without having the radiation of a DEXA. The accuracy of their fragility score measurement is still being evaluated, but if it is proved to be accurate then they will become more useful than a DEXA, although the cost of replacing all the DEXAs would probably be prohibitive!
As far as I know there are only two clinics offering REMS scans in UK, hence the cost, but there are more in Italy, and a few in the US. I was advised by the orthopaedic surgeon who carried out my scan that I didn't need one every year, and that every two or three years is fine for monitoring progress. However, the cost increases every year, and the clinics fill up quickly, so anyone wanting one should book well in advance.
Also less risk of inaccurate diagnosis through misaligned positioning of the patient with REMS, and no radiation either. A winner all round except for the expense.
Interesting isn't it, I assumed that as they take weight and height details that these are taken into account when accessing the results and score but his comments would suggest not 😕
Thank you Framboise, your reply is both uplifting and informative, I will look for the page you recommend. I won't give up all exercise but we love horses and train them in a special way, they are always free to walk away if they don't like anything and we don't even consider putting bits in their mouths or using fear or aversion. I rode my horse for miles and miles bareback with just a rope halter on roads as well as through forests. It was disappointing for a couple of days to think that was gone, but we adapt, there will be other unexpected good things in life.
Can you post your DEXA results, the T-score and Z-score. It's important to know the results. Also what dose of hormone have you been on? Unfortunately comments about brittle bones are too vague, especially when major lifestyle changes are suggested.It is important to avoid too much thyroid hormone but equally so too little. We need the actual results to make good choices.
Thank you jim, I always find your posts very helpful and informative. I don't have results (apart from August TFTs when my T3 was reduced and replaced with Levo), I have moved house and the surgery here is not good, I will chase next week when they can no longer claim 'Christmas backlog).
Hi, sorry I don't think it is wise to write this as you don't know for certain why you have developed osteoporosis. This will scare anyone with tsh below reference range unnecessarily.Just 5 or 10mcg of t3 added to t4 can lower tsh below reference range.
My tsh is undetectable and has been for 10 years. I see my nhs endo 2/3 times a year and he has never raised this issue. He always tests bone profile which apart from low inorganic phosphate which is now normal, is fine, and vit d yearly.
Yes, it's good to highlight osteoporosis on the forum as that is why I booked this appointment. I want to hopefully rule it out and carry on with my T3 medication, and doing everything I can to reduce the risk like resistance training, walking and taking oestrogen, progesterone and testosterone.
In answer to your comments first I haven't said anything like that if your TSH is below reference range you are at risk. Secondly, the endocrinologist stated a few times that it is the excess T3 that has caused this osteoporosis. I am prepared to accept that while respecting your right to disagree. The point I was intending to make is that we need to monitor ourselves and not assume all is well because it has been for many years on the same dose, nor rely on the medical profession to keep on top of our state in these days when they are so busy and such a high turnover and often being seen by locums. Perhaps I should have spent more time making my post clearer.
I'm on T3 only. I had my thyroid totally removed during 2008 & I was poisoned by T4 which is why I'm on T3 only. Like most people I've had years of fighting to keep my T3 only prescription because of the price scandal. I thought they had used every scare tactic to get me off T3. I've got osteoporosis & never once have they connected it to my T3 medication & outright said my T3 has caused my osteoporosis
Interesting. I have not had to fight to obtain or keep T3, my TSH was over 95 in a range of 0.5 to 5 when I had been on Levothyroxine but my body seems to have changed because the Levo seems to be working well now in combination with T3.
Hyperparathyroidism is a major cause of Osteoporosis, Dr Larian World renowned Hyperparathyroidism Consultant, need tests = Bone Profile, serum Calcium adjusted Calcium PTH Albumin and Vitamin D all from the same blood draw and as Close to 8am as Possible whilst fasting
Im sorry to hear your high T3 has caused you irreversible damage. That is sad. I alternate how I do my blood tests. I like to know how high the t3 and t4 levels get or how low they can get also. My TSH usually stays the same no matter what way I test. The only things that change are the t4 and t3 levels. I’m reassured that my levels never go too low or too high with a usual TSH of around 1.5(0.35-5.50). I don’t have any symptoms and I truly believe that’s down to keeping my levels in range just like a healthy persons. It’s all about dosing correctly and timings. I do not agree that levels can go over range causing suppressed TSH only for thyroid cancer patients of which my sister is one and has been warned about the downside of this by her Drs but the alternative is cancer returning.
I feel combination therapy with a little T3 is the best therapy for people with simple primary hypothyroidism, this allows average fT3, fT4 with median TSH levels.
However, in some cases TSH secretion is inadequate, this means you cannot achieve euthyroidism with a normal TSH, it will remain low. A further complication is that there is evidence TSH promotes deiodinase in cells that convert T4 to T3 for local use. This can only be rectified by having above normal serum T3 levels. This poses a risk but the is often grossly overstated. The alternative of being unable to exercise is much worse on the bones. It's a question of being aware of the risk and doing what you can to mitigate it.
There are also forms of resistance to thyroid hormone, either genetic or caused by endocrine disrupting chemicals (EDC) that require supra-normal doses of thyroid hormone. Again this may carry unavoidable risks to bone,
The important point is to be aware of the pros and cons and take action to monitor (DEXA) and mitigate (exercise, supplement).
There is some evidence that above average fT4 levels promote cancer, this does not happen with fT3 at normal levels. I'm not a doctor but I beileve that combination therapy with a little T3 (e.g. 10 mcg liothyronine) should be the standard therapy. This will allow fT4 to be in the safer low half of its reference interval.
Thank you McPammy for your very kind reply, you have made me feel better. I agree with you, we need to keep monitoring how high and low our t3 and t4 levels are and not, as I did, assume because I had been on the same dose for so long there would be no change. I am sorry about your sister and hope very much she continues to be well.
I’m a great believer in keeping in range. Over or under replacement is not good. The whole idea is to mimic a healthy persons thyroid results. That can only be done by knowing the highest and lowest your levels go to and dosing correctly. I’m so sad for you, it must be difficult to come to terms with. I only come on this site to let people know my success and how I achieved that which is in range thyroid levels and maintaining good vitamin levels also. I’m happy to say I’m symptom free and wish just more people on here are too. I’ve been shot down on here many times when I say keep the TSH in range. I find that deeply disappointing. I agree with you re your post.
You've probably been shot down because its not possible for everyone to keep TSH in range, not everyone's HPT axis works properly. I've had very low TSH on Levo, NDT and now combi therapy. Yet my frees are always in range.
I think you are far more unusual in that taking T3 doesnt suppress your TSH. And you are lucky in that you dont have to worry about your Endo/ GP freaking out.
If I want quality of life and to feel halfway human I need my frees high enough, unfortu ately in my case that often means a very low TSH. Not ideal from a doctor viewpoint maybe but nor is being undermedicated either. Its the old balance of risk vs quality of life. If indeed there is a risk.
Thanks Sparkling sunshine for your supportive response. My TSH was suppressed but I was under a great team of endos who did not freak out. I understand how people feel and that some need very high doses of T3 with suppressed TSH. I didn't though say anything about avoiding low TSH, I just meant to encourage people to monitor and be aware of any changes. I realise my post was not clear enough but it would be so long to cover all the potential misunderstandings! 😀
Sorry to hear about your news. It is weird my endo said too high T4 on levothyroxine causes osteoporosis. I was over range on T4 he cut down my T4 and put me on to T3.
High dose boron repairs bones. I can never remember his name but he is on youtube, he is a medical man. He had osteoporosis at 50 and spine shrinkage loosing height. He started on high dose boron 20/30 mgs a day. I am only on 9/12 mgs a day. He is now in his 60's and his Dexa scan shows the bones of a 25 year old, no osteoporosis. Boron is very good for the teeth and brain mood too.
My Dexa scan showed osteoporosis in parts of spine and left hip, they wanted to give a calcium infusion 7 years ago. I refused that as not good. I will not do another Dexa scan as the radiation is too high for my liking, so I just plod away.
A DEXA scan delivers an incredibly low dose of radiation equal to three hours of background radiation, see "Bone Densitometry (DEXA)" in radiologyinfo.org/en/info/s... .
Looking at it another way it is the equivalent of flying for 15 minutes or eating 10 bananas! en.wikipedia.org/wiki/Fligh... . (don't become an astronaut).
These figures are for a DEXA scan of a single area, it will be a little more if a larger area is scanned. I would recommend a DEXA scan if one is offered.
I appreciate that you would have one. I personally would not. I also do not buy into the flying analogy that every doctor and dentist is saying now. If it was a life and death situation I would have one. I won't have a CAT scan either unless a life or death situation. I am fine with ultra sounds and MRI's.
Hi Katherine and thanks for your reply, it's very interesting, I will see if I can find boron, my brain would welcome anything good for it! Is boron prescribed by the NHS?
No not supplied by NHS it is a natural mineral supplement. It does appear that lots of us are so short of minerals now, especially people with thyroid issues. Our stomach acid is too low to cleave of minerals, protein, amino acids, iron, folate and B12 from the food we eat. Our bodies and brain cannot do without minerals so it starts to cannibalise itself by taken them from our bones, teeth, hair fingernails and toenails. I was dangerously low on protein and amino acids my body started to cannibalise my muscles to get the protein I have been working on getting my stomach acid to rights, it has taken me 8 months so far, not as bad as before. I also take a multi mineral capsule daily. I get boron from Amazon.
Thanks for posting. The replies have created a very interesting post 😊
I was diagnosed with osteoporosis of my lower spine last year after initially being told by two medics that my DEXA results were fine. So it seems that interpretation of results possibly can be misunderstood? I'm not saying yours have but I think it depends on the ability of the specialist to understand what the results are showing.
I believe I may have had osteoporosis for many years prior to this (20+ years) possibly due to severe vitamin D deficiency over a long period. Also undiagnosed hypothyroid for some years. Early menopause too with no hrt. Also it seems having agoraphobia and using total sun block the rare times I ventured outside probably didn't help either! 🥴
My focus now has been to get vitamin D levels increased with co factors vitamin K2 MK7 etc and ruling out secondary causes of osteoporosis as I have also been diagnosed with secondary hyperparathyroidism. Hopefully my pth levels will drop once vitamin D sorted.
Not sure if you're seeing a private or NHS endo? It was the endo surgery clinic that referred me to a metabolic clinic. They have said I have to take bisphosphonate drugs but I'm delaying taking them whilst I work on my vitamin D levels and sort out parathyroid issues first.
Hopefully someone will correct me if I'm wrong but isn't walking a good weight bearing exercise for your bones?
Hi Hedgeree and thanks for your reply, that's very interesting that interpretation can be misunderstood. It's an NHS endo I see, I wonder if I could be referred to a metabolic clinic, I didn't know of such things. I too am going to delay taking the bisphosphonates and try boron as recommended in replies on here. Yes, walking is pretty good, much better if on uneven ground, but it's bone-loading that helps most, so things like heavy gardening (not gently pruning the roses on a sunny afternoon!). We should also do these things for the bones:
bend(!), contract, extend and rotate. If you do Yoga we do most of these in Yoga and I designed a programme for my students including for instance weight bearing through the arms and those with strong bones can even do weight bearing through the head and also the shoulders. Should have done it myself!!😆
Thank you for your interest and your care, you have been so kind.
“T3. I asked two and a half years ago to have the dose reduced and some Levo to replace it. “
Who put you on T3 and didn’t replace part of it with levothyroxine when you asked them to do so 2.5 years ago? Also how had osteoporosis never been mentioned?
I think you need to get copies of all of your blood tests and the results of your DEXA scans. DEXA scans can be inaccurate depending on lots of things - how the operator places you, your weight/ size, you must always be scanned on the same machine.
As someone else has mentioned it might be worth looking at REMS scans which also show bone strength - osteoscanuk.com, Nick who does them is a spinal consultant. You have a scan which he explains to you before you leave the room and will discuss your worries.
Like you I no longer want to cycle - I am famous for falling off my bike often in a car park before we have even set off and I have given up on my ambition to ride side saddle - horses can be unpredictable and I suspect parts of me would break if I fell off but I walk a lot. I use Nordic walking poles if the ground looks muddy but I use a treadmill and prop my iPad up to read my kindle when there is snow or ice.
I have a lot of problems with my spine then I fractured my sacrum in 2021 and had a couple of MRI scans which were worth the money as my physios and Pilates teacher know exactly what is going on in my spine. You could probably find a physio who could help you find exercises that would suit your bones which is what I have done.
Might be worth going onto the Bone Health and Osteoporosis part of Healthunlocked. You will get a lot of information and advice on there about various aspects of osteoporosis.
I think the big thing as is so often pointed out - always get and keep copies of all of your blood tests etc.
Crumbs, all the questions I have been asked!! Thank you fruit and nut case for your reply. The problem was 'my' endo left the team and I wasn't passed on to anyone else, just a mistake, it happened in the covid years and I mistakenly thought that had just delayed my usual appointment. Since I had been on the same dose of T3 only for so many years with no problems I didn't worry. Osteoporosis had been mentioned and the Consultant used to write to my GP to get the DEXA scan (or GP didn't).
I have test results going back years but can't yet obtain these recent ones, I will have to go into the surgery, which is a long walk and rarely productive. Ahh, we are similar, I too have fallen off my bike - in my case before even properly on it and right outside a pub!
Gosh, as someone who hasn’t seen or heard from my rheumatologist since I requested a visit in 2021 and that was after I hadn’t been seen since 2019 I can imagine how you slipped through the net. It’s so easy to think you will hear fr9m ‘them’ at some point and very difficult to take on board that your GP hasn’t bothered to book your scan. Sounds like your treatment has been a bit of a mess - that’s putting it mildly.
Can you access your notes etc on the NHS site? That might save you the hike to the surgery although I’m not sure if you need information from them to get onto it.
🤣 Falling off your bike getting on outside a pub - not a good look is it, but easily done. Hopefully you will get back to walking again. When I fractured my sacrum in 2021 I thought I was going to end up needing a mobility scooter for the rest of my life but I’m back walking again, probably not as far and I do like the odd rest as I go but I’m walking a fair distance. Good luck with it all.
I take Bone Balance which is a collagen specifically manufactured to repair & restore bone. It’s flavourless & helps after fractures etc. Lots of useful reviews
Hi thyro1d, My TSH is 0.004, so you could say it is very supressed. I have been taking T3 for 25 years , ever since total removal of my thyroid.I have osteopenia, which was diagnosed in Dec 2016, I was due another Dexa scan in 2020, but Covid got in the way and they have not called me for another appointment. It could well have progressed to Osteoporosis. However, my Mum had osteoporosis (since deceased) and my Sister has it as well, and neither of them have taken thyroid meds, so it can just be hereditary. The Endo's like to tell you that T3 causes it, but it's not always the case. I have tried to go back to just thyroxine only at my Doctor's request but it didn't work because I have no thyroid, and 20% of T3 is produced directly from your thyroid gland. So if I don't have one, I need to be given T3. I'm sure there are a lot of other people who have had it removed, so there is no option but to take T3. I am fortunate to be given it on the NHS, but if not I would have to purchase it myself as I can't live without it.
Maybe if everyone that needed it was given it on the NHS, it would stop them having to buy it on the internet and not being regulated and end up taking too much.
I know this news comes as a total shock. There are not enough details in the post to make an assessment on my part, but for the moment I would advise to calm yourself and to not make any hasty decisions. This is not an emergency that requires immediate action. Collect as much information as you can first.
I was diagnosed with osteoporosis before I went on T3. I was also undertreated with T4. Osteoporosis can have many causes. If you lay on the couch all day because of being undertreated your chances of getting osteoporosis are probably as high as from being overtreated. The doctor who diagnosed me, also diagnosed the undertreatment. She wanted to put me on Prolia. I read up on it and was very concerned. I decided to call Amgen, the company that makes Prolia, and their medical advisor said that "Amgen can not recommend Prolia in your case". This was said after being on the phone with them for about 20 minutes and giving them all my data. My conclusion was that, if the company that makes the stuff and has an interest in selling it, tells me that they can not recommend it for me, I should probably not have it injected into me.
In the osteoporosis group on HealthUnlocked there are frequently stories of people who were supposed to go on osteoporosis medication and did not, but reversed their osteoporosis with diet, supplements and exercise. So it can be done depending on a number of factors. Doctors just snap their fingers and put people on drugs, because that is the easiest thing to do. It's a reflex. In the end it is your decision and I would strongly suggest to look into all options and act appropriate to your situation. The osteoporosis will not get worse in the next few weeks because you did or did not do something.
My favourite book on the subject is "Dr. Lani's No-Nonsense Bone Health Guide: The Truth About Density Testing, Osteoporosis Drugs, and Building Bone Quality at Any Age". Dr. Brooke Goldner's protocol, although designed for autoimmune diseases (lupus in particular), apparently also has reversed osteoporosis. But as I said, it all depends on your specific situation. Wishing you all the best on your quest to do what is best for you.
I’m sorry to hear of your recent osteoporosis diagnosis thyr01d but be wary of just moving from a T3 mono therapy to a T4 mono therapy as Levothyroxine can also cause osteoporosis in some circumstances. As indeed can a deficiency in any of the 3 main sex hormones including testosterone. Blaming exogenous T3 is perhaps just too easy when coincidentally the NHS is actively encouraging medics to shift their patients from mono T3 to mono T4.
Thanks Minimol, I'm not moving to Levo monotherapy, I take T3 as well. Your comment about the sex hormones is very interesting and I wonder if in my case that might be contributory or perhaps even the cause.
I've been on T4 & T3 combination for many years very low TSH. 2015 a gp reduced both my thyroxine & liothyronine by two doses of each because someone at the path lab commented was I overtreated. I quite quickly put on 2 stone in weight within a few months. Very tired sleeping when not at work. So bay within 6 months I had to leave work. Not old enough for my pension no sick pay. Before I left work an endocrinologist said they can reduce the T3 as much as they like but the TSH is permanently suppressed & will never recover. I had 6 years of feeling really unwell before I managed to get my treatment reinstated to the doses I had been used to taking.
I had a total thyroidectomy in 2002 problems with calcium levels , still have problems even though I take caicichew D3 forte.
My personal opinion is not enough research is being done for people like me. I'm now having a problem with a new gp who has referred me to an endocrinologist without my permission about my TSH.
I to am osteopenic in my hips but that was detected when I was 36 well before I had my thyroid removed. I had low oestrogen levels at that age after one pregnancy. I'd sure like to know what people like me are supposed to do when we are presented with all these problems. If I could turn back the clock I wouldn't have had my thyroid removed it was working perfectly fine. I had a large multinodular thyroid causing me symptoms. Ahh well we live & learn, I'm 70 now.
Oh Picketywitch that's so sad, that you were so badly affected that you had to leave work before reaching pension age and so tough to know removing the thyroid was a mistake. We trust the advice we are given until we are old enough to know better!
Hi Picketywitch, me too! I wish I hadn't had mine removed, but I was naive and believed what the Doctor told me, and thought everything would go back to normal after the surgery, I would just have thyroxine instead. Some hope! I have never in 25 years gone back to how I felt before it was removed. I went from 8 stone with a lot of energy to 10 stone and no energy. I too had to give up work early at 52 ( I am now 67) as I was so ill I couldn't cope with it. As you say, once the TSH is supressed, there is no way it will recover again. My Doctor has finally come to that conclusion after taking away the T3 and just giving me more thyroxine, which gave me palpitations and a racing heart, I thought I was having a heart attack. But still the TSH didn't go up it just made me ill. So she had to admit that I knew more about it than her and gave me back the T3. I have a blood test once a year and at the moment she leaves me alone when she sees the results as she knows there is nothing else that can be done. Let's hope she doesn't leave the practice and I have to start again educating a new Doctor!
Adding this in case it's useful. I asked 3 'leading' endocrinologists about TSH/T4/T3 levels. I'll paste my previous post below:
Are problems caused by suppressed TSH or high T4/T3? TJR, September 2024
Leading endocrinologists, well-known in UK and abroad, were asked by a co-lead of ITT Improve Thyroid treatment patient group: “Is it a suppressed TSH itself or high/over range T4/T3 themselves that can lead to problems eg osteoporosis or atrial fibrillation?” They all said it is the T4/T3 levels…
1. Prof Colin Dayan:
"T3 often suppresses TSH. You can take enough T3 which doesn't suppress TSH. But if that's the only way to feel well, you may want to do that, though it's not ideal. It’s a trade-off … low quality of life versus taking a risk. It is a low risk. At the end of the day, it's only T4 and T3 that matter. TSH doesn't matter as it's not acting on tissues. But we use TSH to judge on average what is happening in tissues. It's the levels in the cells that matter."
(Zoom meeting)
2. Dr John Midgley B.Sc (Leeds) D Phil (Oxford)
"TSH will often be suppressed when taking T3 because, molecule for molecule, T3 is about 3.5 times as potent as T4 in suppressing TSH."
Regarding possible increased risks from ‘suppressed TSH’ in studies:
“Tiny increased risks at the lower end of the TSH values cannot be distinguished from zero. Respectable statisticians say that anything below 1.3 should be read as no provable effect.”
(on Thyroid UK HealthUnlocked Forum)
3. Prof Simon Pearce:
"An interesting question and a subject of debate. It's the T4/T3 really, as bones are sensitive to thyroid hormone levels, rather than a suppressed TSH. But a US study showed a fully suppressed TSH can lead to some osteoporosis in mice. You should generally avoid both."
(The Thyroid Trust webinar)
4. Dr Anthony Toft, leading endocrinologist, past president of the British Thyroid Association
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l. In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l. This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l"
(Pulse journal)
5. Prof Antonio Bianco, Twitter 2022:
“The problem in every case is an excess of T4 and/or T3. The low TSH levels only reflect the excess of thyroid hormones. TSH has no effects on the heart. Sometimes, the excess of thyroid hormones is so small that the only indication is a low/suppressed serum TSH.”
“Not the TSH. Except that T3 has rapid kinetics; levels change fast and it is hard to say it is normal. It is high after you take the tablet, and lower several hours after. This makes it harder to track T3.”
“TSH is excellent to make the diagnosis of hypothyroidism. But it is not good to assess treatment with LT4. I am proposing that in addition to symptoms and TSH levels, we also consider T3 levels in patients receiving LT4. After all, T3 is the active thyroid hormone.”
As someone who needs high dose T3-only to function, due to a form of Thyroid Hormone Resistance, it seems perfectly clear that the pituitary hormone TSH is not a reliable marker for dosing hypothyroidism.
It's main function was originally as a diagnostic for hypothyroidism....but it has been tweaked for use as a cheap and unreliable method of guiding dosing which has caused numerous problems
In all cases FT3 is the most important result followed by FT4 but medics still insist TSH tells us what we need to know. Why do they insist on relying on what has now become accepted practice (basically heresay!) rather than on verifiable scientific facts.
You make an excellent point and I've long believed that T3/FT3 is key and must not be ignored.....yet for some unfathomable reason they fear the one thing that is vital to good health. Like all medication it is only unsafe if used wrongly!!
Neither do they accept/understand that what is important is the cellular level of T3. This complicates things because we cannot measure it by testing but we can assess it by any symptoms involved.
T3 does not become active until it reaches the nuclei of the cells and attaches to T3 receptors.
Since serum T3 is inactive there are thyroid conditions (like mine) where relying on serum level T3 is unreliable. I have to rely on good old clinical evaluation ( signs and symptoms) to monitor my dose.
In trying to fit us all into standard neat little boxes with neat test calculations much is missed because we are all different with different needs. I was a square peg that they tried to push into a round hole! I needed to find my own square hole to survive!!
TSH is a red herring, and the quicker that is accepted in decision making land, the quicker it will be to resolve the miseries patients suffer from wrong diagnoses and treatments.
My TSH is totally suppressed and that affects me not, my GPs thought taking a supraphysiological dose of T3 was putting me in danger. They now leave me in control of self medicating my form of cellular hypothyroidism..... I am not alone in this!
As for testing, in the words of our greatly missed mentor, diogenes/ Dr John Midgley....
The whole conceptual thinking behind diagnosis thyroidology and the importance of personal diagnosis based on the patient rather than whether the numbers fall in or out of the normal range is fatally flawed. For the moment mechanical thinking has traduced medical diagnosis.
Change is long overdue....but are the powers that be willing to admit that they (may) have been wrong by following an established route rather than one that is science based and verifiable.
Thank you TaraJ, it is one of the endocrinologists you have quoted that I have been under. (I wonder if this fact might stop people telling me the endo is wrong?)
They tried to scare me by saying because I had a suppressed TSH for 2 years I would get this. What annoys me is they left me with a suppressed TSH because they did not read my test results properly!
Ah yes Lora7again, that's similar to me, only no tests were run for about 2 years. What I find frustrating is that I knew there was a risk with suppressed TSH but with covid delays, the house moves and surgery moves and locum gps, locum endocrinologist and my own consultant leaving I didn't worry but thought all would continue the same. I feel sorry for you, you are probably younger than me, I'm nearly 70 so expect health issues. There are treatments offered and my daughter mentioned that in horses they inject bisphosphanates so bypassing the potential oesophogeal side effects, thought I might ask to be treated like a horse! Or consultat a vet!!😆
did you mean to write "T3 does not affect..." or did you mean TSH ? ~quote from your link " In the scientific literature, there is no doubt that excess thyroid hormone T3 signaling at the site of bone cells causes harm to bones."
Sorry, yes TSH. However the one I am thinking of, which isn't that one, I can actually visualise it, was a study on T3, where it said that T3 (this time I mean T3) does not give you heart attacks or osteoporosis but what they did find was that people were more depressed. I remember it so well because of that particular outcome, as I found it was having badly treated hypothyroidism that made me depressed and since being on T3 (25 years) the one thing I am not, is depressed. I am sure I must have saved it somewhere but I keep looking but cannot find it. Knowing me, when (if) I do find it I will have then lost this thread.
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I have been working on getting my stomach acid to rights, it has taken me 8 months so far, not as bad as before. I also take a multi mineral capsule daily. I get boron from Amazon. 
Can I get t3 and do I have anaemia ?
So what do I do now?
Do I need to adjust my meds?
Help Please! First Medichecks bloods results- I wish I'd done them a year ago as I've nothing to compare with! 
