This article looks at duration of TSH suppression in thyroid cancer treated patients versus controls. It shows that onset of osteoporosis for the TC group was 1% greater than for controls. That is 13.6 v 14.7%. Or, an additional 1 per 100 people. It's interesting that the occurence of OP by TSH suppression is no big deal compared with controls, as has been found before. The authors admit the complexity of a link if any.
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Thanks - I've already got osteoporosis (no doubt due to being overmedicated by levo & then 5 years of steroids that I didn't need) - my endo's big 'threat' via emails is my 'heart health'.... with a suppressed TSH..
My heart health was dire until the TSH was suppressed and I was on NDT. All the awful heart pains stopped. I used to think I was going to keel over from a myocardial infarction it was so bad sometimes. I could stand up without feeling like I was going to pass out, I still have to go carefully from a kneeling or squatting position to standing but I’m not feeling like I’m about to topple over now. They talk a load of rubbish. I’d like them to try out my heart for size and see how much it likes a non suppressed TSH - they would not like it one little bit.
Thanks for telling us your experience: I got a heart murmur (no doubt from overmedicating with levo never had it before that). Unfortunately even those who prescribe NDT don't seem to understand how it works 😩 It really is quite amazing how we all have to do our own research to confirm how well we feel on meds (or not as the case may be) to 'convince' doctors..
MVP may also be an autoimmune disease. It is possible that patients with AITD who also have MVP may be at an increased risk to develop systemic autoimmunity.
Sorry to hear that, the heart is very sensitive to T3. It seems high T4 levels don’t help and are more likely to happen on Levothyroxine. I self medicated NDT and found a very good guide to follow luckily it all worked out really well for me. I had to tell the doctor how it worked and affected the blood results rendering them unhelpful without free t3. She seemed very interested not at all judgemental she was only newly qualified good that she actually listened to me. I mean we (NDT self medicators) ought to be of interest to them especially if we feel much better than on T4 monotherapy, it ought to set them questioning the rubbish they’ve been brainwashed with at medical school. If we can find out this information why can’t they? I though medicine was supposed to be their speciality but somehow thyroid issues don’t really warrant any effort in keeping up to date with latest research, despite it being such a common problem.
Hi TSH110, I agree entirely with you - what I find amazing is that my endo did prescribe me NDT but doesn't seem to know how it works.. Not really looking forward to my first physical appointment with her this week in 3 years (I'm hoping she'll read the article but I doubt it!) If you found a very good guide would you mind sending it to me/posting it? If nothing else it may help me even if the endo doesn't bother! I was on the same dosage for years til major stress last year & cortisol levels plummeted - endo's take: I was hyper.. so it's often a uphill battle! I get the impression most endos are just focussing on diabetes etc.. although saying that last time I saw mine she didn't even do the basic stuff like bp/weight !! I get the impression a lot are either too busy or not too interested...
It uses the methods for determining correct dosage that doctors were once well trained in when NDT was the only thyroid hormone therapy. There are no blood tests, it goes on how the patient feels and gives detailed advice on dosing protocol. I hope you find it interesting. Your endo could learn a lot from it if she were to read it. Lets face it, it was used from 1889 to 1960’s when Levothyroxine superceded it (a sad day in my book) so it has a long history of successful use, before that there was no treatment at all. I’d have died at 52 had I been living back then.
Thank you TSH110 for this - I should perhaps review how I take my ERFA after reading this!! I've saved the link and will keep it on hold for the endo tomorrow (if she'd read it - I get the impression she hardly looks at any of the reports I send her- lupus diagnosis (scalp) last year: her reply was 'lots of people with hashimotos get it'! If I could find another endo I would but I'm sort of stuck with her til then ☹️ Still not 100% convinced lupus wasn't triggered by my being perhaps slightly hypo (during Covid started feeling cold at 20.30 at night..like I did when thyroid wasn't stabilised...endo's reply was to do with menopause/oestrogen loss.. 😕) the saga continues 💪
Interesting to see - with those odds, I’ll take my chances. The risks of getting osteoporosis from lack of activity because one sits exhausted on the sofa when under medicated will at least equal if not exceed any risk they perceive. 🤔
on your page - I’ve seen the other option in my mum’s decline 10 years crawling around them a further 7 descending into being bedridden and unable to do a thing for herself- I’m pretty sure undiagnosed hypothyroidism. It’s on my mums side of the family. My dad was diagnosed hypo in his early sixties.
they lived with us in their dotage but I couldn’t manage the last year for Dad or Mum. Dad because he became dangerous doing crazy things like piling furniture on top of the bed she was in (Alzheimer’s) had to protect Mum because she couldn’t get out the way and finally Mum went into care when I started grinding to a halt- 8 months before diagnosis of hypothyroidism. Yea was a bit of a mauler that decade. 😱 looking back I just can’t get my head to in d how we coped. We did have care coming in to relieve me to work in business but there was little to no rest.
It sounds utterly nightmarish poor you trying to deal with that terrible stuff it’s really tragic. Do you think the terrible stress of it provoked the thyroid problems? My then partner tried to commit suicide twice and very soon after mine just galloped out of control I hadn’t been well for some years with all sorts of symptoms so already had it, but that stage was like falling into an abyss, it just went haywire. They do say stress can trigger it.
Yes I had disparate symptoms for the ten years of care but I could feel what I can only describe as my body breaking down about 3 years before diagnosis the year Dad went into care. That alleviated the stress and physical workload a bit but it was too late. It’s like there’s an incremental ramping up of the condition until it becomes overt.
Stress absolutely was my trigger no doubt about it. At one stage I was thinking I was going to die and just praying I would be around long enough to see them safely to the end. All this time hubby is helping where he could (and boy he did) and taking strain in the business- but there were things I had to do and to be honest it saved my sanity (just!🤪)
I’m actually on just levo -with a suppressed TSH (posted my results a while ago) and it is working, but I put that down to my under medication being rectified relatively quickly before the ‘feedback loops’ for want of a better phrase, had deteriorated. I’m reading lived experience building up a picture. The longer people are mismanaged in their treatment the harder it is for them to get well. I truly believe some (not all people) are turned into complex cases to solve medically BECAUSE of the poor treatment over a prolonged period and a fairly broad lack of understanding in the medical profession.
The bee in my bonnet is buzzing about it. But I don’t know where to go with it yet. I need some clear time to think and process and I’m working 7 days a week at the moment.
The longer people are mismanaged in their treatment the harder it is for them to get well. I truly believe some (not all people) are turned into complex cases to solve medically BECAUSE of the poor treatment over a prolonged period and a fairly broad lack of understanding in the medical profession.
Yes I’d agree with that. Glad Levothyroxine suits you it makes life easier. My close relatives with thyroid disorder thrived on it so I was really disappointed when it didn’t do it for me . I knew something was wrong they bounced back in weeks but after three years I stlll felt terrible. They both had thyroid cancer so probably had a suppressive dose but when I tried upping it I felt totally wired and not at all right I never went higher that 150 mcg I know one relative was on 175mcg and is tiny compared to me. I think I’d have blown a gasket on 175 🤣🤣🤣 I only needed 1.25 grains NDT which is roughly equivalent to 125 mcg levo which is just slightly less what I was parked on by the endocrinologist (120/125 alternating) it has to be a conversion issue in my case I have one naff alléle for DIO2 and genes for thyroid hormone resistance so perhaps that’s why. Relatives are not into DNA analysis it would have been interesting to compare the relevant RS numbers
that is very interesting- every nugget I read helps to build a picture. I’m determined to get involved to try to change things. Being well makes me uniquely placed to advocate. I’m sorted it’s not my beef so to speak- but I can see the problems.
I was put on levo too early and too strong: I had no symptoms of hypo and ended up with lots of weight palpitations & constantly tired: I'm sure me going to the gym whilst being overmedicated probably helped get the heart murmur which I never had before this whole nightmare started!! For me being on levo was my brain forcing my body to do things.. never felt well on it.. traditional endos ignored the signs cause ths was 'normal'!
Well I was stable on the same dose of NDT for 7 years until last September where major stock (foundations of our house damaged by new build/legal ongoing/cracks all over house), triggered very low cortisol.. Endo used this and my subsequent loss of appetite/weight loss to'confirm' I was hyper!! (hence her suggestion to reduce my meds... I tried that for one day and felt worse. So kept on original dose & did saliva cortisol test in February/then June.. Cortisol still low, FT3 and FT4 have slighly improved and TSH has gotten worse (so I can expect which one the endo will read tomorrow!). GP done tons of tests for leaky gut etc so she's looking at the overall picture (still waiting on some results) and let me go back on DHEA & increased NDT since April so have felt much better since on that dose (90mg). Like all my health issues it's complicated, I feel the house cracks was a major stress trigger - loss of appetite is rare for me! Both my French gp/rhumatos still agree that I'm hypo (based on June results), lab messed up and had to redo FT3 and FT4 last Thursday so just hope I get them before endo appointment tomorrow. 🙏
That is incredibly stressful - a friends house is falling down because of someone blocking a drain leading to flooding under her foundations which are now moving, she didn’t get legal cover on her house insurance 😱 and these things are expensive to fight and difficult to win and get compensation. This sort of thing is terribly stressful your house should be a safe place not showing signs of subsidence and being unstable.
The endo sounds a bit gung-ho with a hyper diagnosis don’t you need positive TRAB antibodies and a full panel showing you really are overactive? It could just be a vacillation if you still have functioning thyroid tissue dumping thyroxine stores as bits of it die causing temporary blips. This is not really hyperthyroidism. I hope you get the test results back in time to show you are not overactive. I had atropic autoimmune thyroiditis, no goitre, initially with overactivity and short hypo phases which gradually reversed so hypo dominated with short hyper phases until the thyroid is destroyed by autoimmune processes and it’s curtains if you dont get treatment & I got close to that . It has graves type antibodies initially than the destructive ones (might be TPO ) found in hashis that lead to gland atrophy. I was very thin and had heart pains, pretibial myxodema, insomnia and eye problems suspiciously like TED but also many hypo symptoms too like feeling really really cold all the time and a shed load of others.
Well I found out (very belatedly) that being prescribed a certain antibiotic when I was born would have affected my bones - I should have been giving Vit D (but that never happened) so that plus overmedicated with levo & prescribed prednisolone for 5 years was the perfect situation to get osteoporosis... At the moment I try and do pilates stretching in the morning and if I have enough energy a 20-30 minute walk.. recently with low cortisol that's not been the case!
Yes ignorance is a terrible thing - I doubt my parents were told about the side effects of all the antibiotics I had when I was born premature.. unfortunately sometimes a combination of mismanagement does take its toll: I should probably add years of French osteopaths cracking my bones probably didn't help either! I believe in Italy they have to see a bone density test before their allowed to 'crack'!
Don't know but wish the French had done that too - they did used to yank your neck - until people had aneurisms and then they 'banned' it... sounds to me like the Italians are head on the holistic approach!! Perhaps a national trait - I found Spanish doctors have a more holistic approach than French ones - they know that not everyone can do well on the 'normal' meds, more attuned to allergies etc too: basically listen to patients! Unfortunately to my knowledge NDT isn't prescribed there either (would be an alternative to my Irish endo !)
I certainly don’t have it. My dexa scan was in the top 1% of the population for bone density. I had real problems with broken ribs and a broken pelvis on Levothyroxine but it all stopped on NDT thank goodness and the scan was about two years after starting NDT. I did wonder if my very prolonged period of untreated thyroid disorder and the seriousness of my condition when I did get a diagnosis along with the inadequacy of t4 monotherapy in my case, was the real cause of my bones weakening, all those breaks all occurring in a short period of around three years the first rib break was in a cycle accident when I was untreated and the other two I was on Levothyroxine when my ribs were snapping like matchsticks. Before this time I had never broken any bones.
I didn’t know about a higher incidence of osteoporosis with DOI2 variation which also is related to poor thyroid hormone conversion. I had better keep up the running even if it’s more akin to plodding these days!
On 2 webinars I asked 2 endos who are well known nationally if it's a suppressed TSH or high/over range T4 and T3 that can lead to problems eg osteoporosis or Afbib. I was told by both that it's not the suppressed TSH in itself.
Studies don't seem to differentiate, hence my question to them both. They both said it's the T4/T3 levels eg
"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."
and
"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."
Tania from Thyroid Support Canada says that suppression of TSH via exogenous thyroid hormone isn't the same as hyperthyroidism. So seems to confirm that it's the levels of hormone being (too) high rather than the TSH itself that may be the aggravating factor in osteoporosis
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