T3 and osteoporosis dilemma

I wrote on here a couple of months ago explaining how I got referred to an endo to have a review of my T3, (I am T3 only) following the usual issues with the CCGs going on everywhere. He had not treated anyone T3 only, although did prescribe T4/T3 and he was actually OK about me continuing.

However he was very alarmed about my TSH being below range, and wanted me to reduce it to get into range - despite me having no symptoms of being overtreated (I had low BP, normal pulse, and lowish temps at that time). He also referred me for a bone density scan (I am 64 and 15 years post menopause).

Meanwhile I tried to reduce my T3 to see how I did, and actually managed to reduce my 55mcg (over 3 daily doses) to 45 mcg (3 doses) without too many symptoms apart from the first few weeks when I felt very lacking in energy. Then I did seem to stabilise somewhat, and he made mention of the thyroid receptors resetting.

Unfortunately I heard last week that I DO have osteoporosis which was a bit of a shock as I felt I was low risk. I had 2 of my T scores of 3.2. It's not likely that T3 has been the cause of all of that (if at all) as I have only been on T3 for 4 years, but I feel I have to be cautious now in what I do and try to improve my bone density if possible.

My TSH after a month of 45 mcg is still below range, and the endo wanted me to try reducing furher. This week I began to drop by a further 5 mcg to 40 mcg per day, and almost instantly I have pretty horrendous joint and muscle pain that I did not have before. I am prepared to try this despite the pain for a few weeks, but of course common sense says that after that I need to raise my T3 again to the previous dose where I had no pain.

I know that research indicates that very low TSH might contribute to bone fractures, but continuing pain would mean I would be put off doing any exercise! Interestingly my GP is not currently harassing me to reduce more, and the endo has left his job and gone elsewhere, so maybe I will be left in peace to make my own decisions on this!

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  • Agapanthus Former NHS Endo was obsessed that I was taking too much (he wouldn't prescribe although agreed that I needed it) and wanted me to reduce to 50mcg which I refused. Dexa scan organised by him showed that I had osteoporosis of the spine and pelvis.

    Removed myself from his list as he was useless, obtained a copy of all of my medical records from GP surgery and, low and behold, discovered that I'd been undiagnosed hypo for some 18 years before NHS Endo diagnosed me.

    Definitely worth getting hold of your medical records as, in my case, it was multiple GPs' incompetence that actually caused osteoporosis and not excessive T3.

  • Do you mean that you went 18 years without being treated cinnamon_girl (aaargh!). In my case thankfully I was diagnosed some 17 years before I began on T3, and had been taking T4 for 17 years.

    I have seen my medical records. I don't have a hardvcopy but I did trawl through them a couple of years ago, and made notes on anything useful. They were fairly innocent, other than that as a teenager the Practice (not current one and was 50 years ago) had put my mother's tranquilliser prescription notes on my notes in error a couple of times!! Interestingly, I was then prescribed them by a different Dr in another surgery some 2 years later - he probably thought I had already been on them (it was in the days when valium was given out like sweeties. I took one dose but never another!)

  • Agapanthus yes, I knew I wasn't right and it was obvious I was hypo. Hard of thinking GPs' maintained I was depressed and needed anti depressants which I disagreed with. Repeatedly told them I was hypo, took along research papers etc but they wouldn't have it. Doctor knows best, lolz!!!

    You were lucky to be diagnosed without a fight but I guess that was before these stupid guidelines were put in place. Good that you've seen your medical records and a shame you were prescribed tranquillisers.

    Dr Lowe took 150mcg of T3, some people do need a high dose after all. I think we all have to make up our own minds as to whether we want quality of life or pleasing an Endo who treats numbers only.

  • I think that the guidelines were just beginning to tighten up cinnamon_girl (sorry tried to tag you but weirdly it does not bring up your name as I see it here), and my scores were borderline, but because they were moving up he was prepared to give me Thyroxine after a retest.

    The whole osteoporosis worry has just thrown one more thing into the ring, but the more I see and research on it, I find multiple causes. I just don't want to make it worse, and measuring circulating T3 is tricky as I see it. I know some here say to wait overnight, but is that a true figure then of circulating T3? The endo says not. I tried to compromise and had the test done a couple of hours afer my dose and it was over range. If I test after not taking it for say, 12-18 hrs though it's within range. Who knows who is right? Paul Robinson reckons that those on T3 only need higher circulating T3 and provides a neat explanatiion in his book Recovering with T3.

    I hope to get another bone density test done in 2 years time to see which way I am going, and meanwhile make sure all my vitamins/minerals are optimised, and do a bit more weight bearing exercise if I can. I don't want to use bisphosphonates.

  • My mother was diagnosed with hypothyroidism in her 50s about 30 years ago. She was put on 75mcg Levo at the start and in the 30 years that followed she never had her dose changed because her blood tests were always classified as "normal".

    My mother was a doctor's dream patient. She almost never questioned anything, thought that doctors knew best, was compliant with all the meds that were thrown at her, and was in all ways a good little patient. She was patronised, fobbed off, and ignored, but mum just sucked it all up because patients were supposed to do what the doctor told them.

    And despite all this she developed such severe osteoporosis that her hip bones crumbled. She couldn't have a hip replacement because her bones were too weak and any replacement would have fallen out in no time.

    She developed spinal osteoporosis as well and her back collapsed. By the end of her life she had at least 3 fractured vertebrae for which there was no treatment so she was just left to rot. Mum knew she had one fracture, thanks to x-rays performed by the rheumatoid arthritis (RA) clinic. Then one day she twisted awkwardly as she got out of her car and collapsed with the pain. A family member took her to the doctors and she told the doctor about the severe pain she had. The response? "Well, what do you expect me to do about it?" So Mum just carried on in dreadful pain. X-rays done 9 months later by the RA clinic showed she had fractured another 2 vertebrae.

    The moral of this tale is, if you worry about the effect of T3 on the development of osteoporosis, just remember that T4 alone is likely to be no better, and in fact may be a lot worse.

    Instead of switching from T3 to T4 I would suggest you think about keeping your vitamin D optimal, avoiding calcium supplements unless you know you are deficient or low in it, taking vitamin K2 and magnesium. I have read that these all help.

    Just remember that calcium is one of the main constituents of chalk and is used (amongst other things) to make antacids that you can just suck to destruction. There is far more to bone than just calcium and overdoing the calcium won't necessarily give you strong bones.

    Also, remember that some current treatments for osteoporosis are designed to reduce the turnover of bone so that old bone is kept longer and new bone doesn't get made so easily. So instead of being bendy, people on osteoporosis treatments have brittle bones.

    I haven't done very much research into osteoporosis. Anything I've said on the subject should be checked and double-checked and triple-checked.

    For a full list of minerals important to bone health I found this rather good table :

    lpi.oregonstate.edu/mic/hea...

  • A rather more complete reference to "What are bones made of" :

    betterbones.com/wp-content/...

    Worth saving that link I think. :)

  • Thank you humanbean - your poor mum to be in such pain and to see her suffer so much. I am so sorry to hear that story.

    After 4 days of pain from reducing my T3 I am taking it back up again, although I will probably end up on less than the 55 mcg I was on until I saw the endo. I seem to be OKish on slightly less, but it was interesting how the extra cut of 5mcg this week produced such pain instantly when I have had the best year pain free for a long time, and I was getting no muscle pain payback as in the past. I really don't want to go back to that place!

    Yes, research done so far seems to show much of what you have pointed out. I note that the National Osteoporosis Society booklets don't seem to be fans of taking extra calcium, and I have not done so up until now, but have been supplementing with magnesium and D3 for some years. I only found out about K2 very recently and had just begun to use it, so it's another useful supplement. I will try a little strontium supplement also. Plus I visit a medical herbalist who may have something she can add in.

    There seem to be so many reasons for osteoporosis to develop and when you go for the bone scan they run through a list of some of them to assess your risk from then on of fracture. Mine was 15% for the next 10 years. One of the things is Proton Pump Inhibitors that are given out like sweeties for stomach pain. I took them for around 4 years, so that may have contributed to some of this issue, though thankfully have got myself off them some years back. They ask if you have been on them for 10 years, but I am sure one month is too long! My digestion was not in a good place for a long time, but is improving with care.

    No, I don't like the sound of the treatments for osteoporosis and what it does to the bone. It does not sound a great idea really. I have already decided to refuse for the time being at any rate, to see if I can improve things in a more natural way. I know it's possible but not easy.

    Thank you for the links, I will check them out!

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