im confused and worried about my bone health, so i wanted to try get advice from here aswell as posting on the thyroid forum. Please if anyone knows about this, or can offer any other advice on how to improve my bone health , its much appreciated.
A brief recent history..... Ive been self medicating with T3 since about april , and feel much better ( i was on 125/100 mch levothyroxine alternate days, reduced that to 75 mcg and added 12.5 mcg tyromel ( gradually to start ) ) as far as thyroid symptoms are concerned i feel pretty good, and i dont have bradycardia any more.
last call i had with this Endo was about 4 months ago, he told me to reduce my levo to 50 mcg a day but continue with the T3, as i needed to bring my tsh down , saying he really wants to help but legally cannot prescribe T3 until my tsh is higher, he was also concerned that my Dexa scan showed early stage of oesteoperosis .
So.. i reduced my levo and with a week i started feeling faint again ( the issue i had before going on T3 was fainting and bradycardia , severe fatigue and worsening fibromyalgia symptoms ) I called my gp , he immediately put my prescription back to what it was . My most recent blood tests show my tsh still supressed but my t3 and t4 is actually a bit lower than last time ( both times ive been on T3 and same doses, my meds not taken for 25 hrs, so exactly the same both times so whilst my t3 may be false low i find it a bit weird its going lower )
Anyway i feel ok and think this dose feel correct , my metabolism is normal for the first time in my life, and im not getting dizzy or faint, my bp and heart rate is normal for the first time in decades.
My concern is my bones, because ive just also been diagnosed with oesteo arthritis.. been getting severe cramping and pain in my hands and have a hip defect, which causes a lot of pain, aswell as degenerative disc syndrome in my upper back. So i am concerned to be told im on the verge of oesteoperosis, as this is showing mainly in my hips and back aswell.
my TSH is 0.01 - has been exactly the same for several years despite my levo dose or t3 and t4 level going up and down within range over the years due to changes in dosing my tsh remains suppressed
So this phone call, i explained to the endo i had tried to reduce my levo, as he asked, to bring my tsh down, but i couldnt cope with the effect. He kept talking over me, and saying he wants to help from the bottom of his heart, because im telling him i clearly feel better.. then he said he would prescribe me T3, ( hooray! but only till next check up, and if my tsh was still suppressed he would have to withdraw the prescription. ( eh ??! :$ ) I asked him how can i change my tsh without reducing my meds and feeling awful? .. he didnt have an answer. Then he asked if id had a dexa scan and looked that up, ( it was done about a year ago) then he said because it showed early stage osteoporosis ' which is very severe for my age ' he then back tracked saying that he cannot prescribe me T3 because with suppressed tsh and bone condition he cannot legally prescribe T3, and even if i went private no doctor in the country will do because of the high risk of bone issues and heart issues.
Weird thing is that the last endo, said the dexa scan showed pre osteoporosis, and when i asked how bad it was he said it wasnt too bad .. he said he would put me on T3 in april when the law changed or some other reason, but then he left the hospital and so this endo is a different one.
I tried to ask, can i improve my bone health in any way ?.. i tried tp explain i am taking calcium, vit D and K2 mk7 for my bones, i didnt even get the full sentence out before he talked over me - he wasnt willing or able to give me any other advice at all. Just said hed make an appointment for blood tests in 4 months and another dexa scan in 4 months too. Then repeated that if i can get my tsh in range he will consider prescribing T3, I asked again could he give me any info or advice on how to do this without making myself sick and getting bradycardia again, he said he couldnt! He wouldnt do a dexa scan any sooner either, or give me an answer to whether my bone structure could improve from pre osteoporosis, by eating better and taking suppliments. he simply could not give me any advice at all.
I am VERY concerned about my bone health and need to know if i am damaging my bones by taking T3 ?
I know many of you advocate T3 and i understand why, as i do feel much better, but i dont want to continue if im going to be a cripple in a few years because of it .
Please bear in mind im 53, i really should not be getting bone issues at my age, I am often in agony and whilst i feel much better in myself and my energy level, the pain im getting in my hips and hands is becoming severe recently. Ive increased / remembering to take my suppliments and getting less cramps
- I take multi b vits ( with folate) gentle iron, vit c, vit d, calcium, zinc magnesium k2mk7, all the correct versions of everything thanks to advice here .
I havent re tested since my last post, so there is info on blood tests on there.
If this doctor IS scaremongering me, then please can someone provide links to actual medical evidence that i can add to an appeal to a second opinion. and to put my mind at ease .
Any advice much appreciated. thank you
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MrsClanger
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Oh dear, what a complicated range of issues you have, and so sorry you're not getting any support in resolving them. I don't really understand the T3 and TSH issues, but do suggest that you get a copy of your DEXA scan result so that you can see for yourself what your t-scores (measures of bone density) are. The pain you describe is almost certainly down to osteoarthritis, as osteoporosis doesn't cause pain unless you fracture. Some of the causes of osteoporosis can also cause pain though, for example, low blood Vitamin D and/or hyperparathyroidism. If you've been diagnosed with osteoporosis, you should have had your blood D, calcium and parathyroid levels (not the same as thyroid) checked, and other causes also ruled out, such coeliac disease and other absorption issues. If you haven't had these tests, I would ask for them as soon as possible, because if there's a treatable cause, that could slow down further bone loss.
"Early stage osteoporosis" would only be mild (although osteoporosis isn't actually defined in stages as such), so I guess when he said it's severe for your age, he meant that, although mild, it's worse than it should be for your age. You should have t-scores, comparing your bone density with an average 30 year old, and z-scores, comparing it with someone your own age. Your z-scores will tell you whether you're in the normal range for age or not. The NHS website says that a z-score below -2 (eg -2.1, -2.2, etc) is worse than it should be for your age. Osteoporosis itself is defined as a t-score of -2.5 or worse. T-scores and z-scores will be different, because they make different comparisons. You should also be aware that bone density isn't necessarily the same thing as bone strength. Having a fragility fracture is the only way of really knowing that your bones aren't strong enough, but of course we'd all rather avoid that if possible!
Thank you so much this is really helpful. I had raised growth hormone on some blood tests and they tested me for acromegaly and also tested my cortisol, they said both came back normal, but never explained why the growth hormone was high, so that confused me , do you know if high growth hormone has anything to do with parathyroid ?
I will ask for a different endocrinologist , i just looked up patathyroid, i suffer with all of the symptoms listed except full blown osteoporosis and kidney stones.
Sorry, I've no idea whether there's a link between the two. It's definitely worth getting parathyroid levels checked though, and make sure they do it at the same time as testing blood D and calcium levels, as the three interact with each other. The danger signal for hyperparathyroidism is high parathyroid and high calcium, but it's possible to have it with normal blood calcium levels. If everything is normal, don't assume that a normal calcium level means you're getting enough calcium. If things are working as they should, our bodies maintain blood calcium within a narrow range, meaning that if we don't have a high enough intake, it will be prioritised in the blood and insufficient will reach our bones. Also, make sure your D level is optimal. In the UK many doctors consider 50nmol/litre is good enough (the bottom of the normal range), but some experts recommend it should be at least 75 nmol/litre and maybe even 100 nmol/litre or higher. The "normal" range is usually considered to be 50-150, though some labs say 50-200.
Good job really as we are constantly let down by the medical profession. As you may have read previously I have osteoporosis due to hyperparathyroidism and yet no one tests for this when osteoporosis is diagnosed. It's as if they don't want osteoporosis to ever improve.......Keep doing what you so x
I've come across so many people who haven't been tested for hyperparathyroidism, and a few who've only discovered they have it when they've asked their doctor to run the relevant blood tests! The problem is that GPs usually know very little about osteoporosis.
GP'S know even less about hyperparathyroidism. Took 4 years for them to discover I had it even though I had hypercalcemia all that time. It was only when I got my diagnosis that they then did ultrasound on my neck a sestamibi scan, dexa scan and one on my kidney/urinary tract. I was found to have osteoporosis but no kidney stones. Mibi was inconclusive but my surgeon said my bloods say I had hyperparathyroidism so would check all my parathyroid glands. I'm 6 months post surgery and having bloods done this coming Monday. Fingers crossed they are normal. Definitely feel much better. Worth getting a blood test if osteoporosis diagnosed 😌
It's not just the GPs at fault, I have recently been having telephone conversations with the endocrinologist about my osteoporosis and I have had to ask him to request the relevant blood tests for hyperparathyroidism. I wouldn't have known to ask for this but for the information I have picked up on this site. Thank you for sharing your knowledge, as there is so much to learn.
Same. I'm starting to think my endocrinologist is useless. I asked for the PTH test after I just happened to learn about the parathyriod gland when I searched for "how does your body absorb calcium." I had the test on 12/3021 and after having the test, while doing more research, I learned that if you are taking bisphophonates the test may be inaccurate. Seriously, my doctor didn't bother to mention this when I asked him about having the test and he is the one who prescribed the bisphosphonates. Additionally, since having the test, I've heard nothing back from his office. I called on Tuesday, and the nurse said, "His notes state that he will review the bloodwork with you during your appt next week." I said, I don't have an appt next week. Then she said they would call me back and still nothing.
Dr. Brown / BetterBones.com has a list of tests you should go armed to your appts with and at least review with your doctor. betterbones.com/testing/wha... You might not need to have them all but it is far better to understand why your bones are thinning prior to your doctor prescribing drugs with potentially serious side effects. All the osteo-meds in the world aren't going to fix thinning bones if they cause of the bone loss is hyperparathyroidism.
In the link I provided, if you scroll down there is a .pdf that can easily be printed.
Hi Met, got my dexa results from the hospital,heres what it says ( done 3 march 2020 )
Ive also asked to have a different endocrinologist to assess me again and test for parathyroid , and do another dexa ( as ive been taking supplements since then, and started on t3 , and lost about a stone in weight, so id like to have it checked on. )
How bad is it ??!
T score total spine -1.4 Z score total spine -0.5
T score total hip -1.7 Z score total hip -1.2
T score NOF -1.8 Z score NOF -0.9
Comment - There is evidence of oesteopenia within the spine and also at the hip .
Protective bone management and ongoing follow up are indicated.
I don't know why the word severe has been used as you don't have osteoporosis at all, just osteopenia, nowhere near osteoporosis! Your t-scores compare you to a 30 year old so are bound to be negative. Your t-scores compare with average for your age and are within the normal range. So unless they're concerned for other reasons (eg if you've had a fragility fracture) I cannot understand where the osteoporosis diagnosis has come from!
ah ok, so the higher the - number is worse ? .. well thats a relief, its not too bad, thank you. It was the endocrinologist who i was transferred to for the last two appointments who said its severe, he is refusing to prescribe me T3 on the basis of this , maybe he doesnt understand the test results or anything for that matter!! The last endo said it wasnt that bad and was willing to prescribe , but sadly he left. So im hoping whoever i get moved to is more knowledgeable then.
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but only till next check up, and if my tsh was still suppressed he would have to withdraw the prescription. ( eh ??! :$ ) I asked him how can i change my tsh without reducing my meds and feeling awful? .. he didnt have an answer. Then he asked if id had a dexa scan and looked that up, ( it was done about a year ago) then he said because it showed early stage osteoporosis ' which is very severe for my age ' he then back tracked saying that he cannot prescribe me T3 because with suppressed tsh and bone condition he cannot legally prescribe T3, and even if i went private no doctor in the country will do because of the high risk of bone issues and heart issues.
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