Hi guys, just got off phone with endo, and im confused and worried.
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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Is this recent post by diogenes any help ? healthunlocked.com/thyroidu... longterm-subclinical-hyperthyroidism-does-not-affect-bone-density-in-patients-having-had-thyroid-ablation-for-cancer
the point being .. that it proves that supressed TSH with fT4 in range didn't make anybodys osteoporisis get worse . They deliberately give doses of Levo that are high enough to supress TSH to thyroid cancer patients . as it prevents any thyroid activity that could encourage any cancer cells remaining after RAI /surgery to regrow. (Or at least i think that 's what it proves .. i confess i haven't read it properly )
But don't discount it just because it's about cancer patients .. they only use them because they are the only group of patients who are instructed to have enough Levo to give them a deliberately supressed TSH. ..... it's not a study about cancer .. it's a study about supressed TSH.
Your doctor is scaremongering you. Only elevated T3 levels are an osteoporosis risk, and you need adequate T3 levels to prevent osteoporosis. If you are unable to convert enough T3 from Levothyroxine, then you have to medicate it.
Good bone health is a continuous process of bone formation & resorption, replaced by bone cells known as osteoblasts & osteoclasts all regulated by PTH, Vit D, calcitonin and thyroid hormones, most notably T3. Oestrogen also has bone preserving effects. Osteoporosis is the result of an imbalance between bone resorption & formation, resulting in a low bone mass and structural weaknesses.
The normal bone remodelling cycle is about 200 days but reduced up to half in hyperthyroidism when bone absorption will exceed bone production resulting in a net loss of bone mass. In hypothyroidism it increases by up to 700 days, …increasing bone mass but fracture risk comes from bone stiffness/abnormal bone hardening.
TSH does influence bone health (with studies showing both elevated or low to reduce body mass density) but medicating T3 which lowers TSH offsets loss of TSH benefit as both work on the same osteoblasts & osteoclasts receptors. Therefore, those medicating levothyroxine with a low TSH and unable to raise sufficient T3 levels for well-being will be at risk of osteoporosis.
In most people T4 has to remain within range to work effectively converting a proportion to T3 as opposed to excess RT3 which will work against. Some people need higher levels of T3 for well-being & so medicate more. High levels of SHBG can be used in assessment of whether T3 levels are too high for healthy bone production.
I was diagnosed osteopenic together with my Hashi diagnosis, aged 48 years old. Like you I was devastated but medicating T4 + T3, HRT & Vit D over several years actually improved my bone density evidenced by numerous DEXA scans. Unfortunately I have since been taken off HRT and need to speak with my endo if there are other alternatives for bone health.
Hypothyroidism commonly decreases Vit D levels, dysregulates oestrogen cycles that later become deficient after menopause, and these commonly need replacing. Re supplementing calcium, have you had actual calcium levels tested?
If our HPT axis worked normally we would have enough T3 converted from our T4 and a healthy TSH level, but many of us simply don’t. Your endo is evidence of just how clueless many are regarding thyroid psychology. Sorry to hear about your RA diagnosis. I don’t know a lot about RA but all these diagnosis’ are a lot to take in.
I just read your reply to Mrs Clanger and was concerned about this statement “ Therefore, those medicating levothyroxine with a low TSH and unable to raise sufficient T3 levels for well-being will be at risk of osteoporosis.”. My TSH is low and my T3 not particularly high, I’ll post my results in a moment. I don’t want to be at risk of osteoporosis. I have been battling to increase my Levo for years having been left on a starter dose for years by negligent gp and after reading so many books and advice from brilliant people like you on this forum (Thankyou!) I am now up to 100mcg and feel a bit better, but am also in menopause.. Should I request a scan or will they just want me to reduce my dose again? I don’t really want to put my head above water but don’t want to cause other problems either. I’m supplementing vitamin d and iron as they are always low.
Yes, you don’t want both a low TSH and low T3 levels.
However, your thyroid hormone levels are good. TSH is low, but FT4 77% through range & FT3 a very healthy 63%. These levels should be encouraging healthy bone growth.
I think as you are menopausal with hypothyroidism it’s acceptable to request a DEXA scan, particularly as you previously spent years under-medicated. With resources being tied up with COVID though it could be many months. This could also be the door to opening for body-identical HRT should you want it.
Folate is good but Vit B12 is too low & needs supplementing. I would supplement a VitB12 and B complex separately that excludes folate which is just over-range atm. I can’t see a Vit D result but ferritin is dire at just 8.64% through range. This is seriously low. Hb isn’t bad yet but MCH is dropping .. (pre)anemic? If you are not supplementing prescribed iron ask your GP for a full iron panel with a view to him prescribing iron and monitoring levels. And WBC are low, commonly seen after years of Hashi.
Dear Radd,Thank you so much for your detailed reply. I am feeling reassured! Yes my iron and vitamin d are always low and I have been supplementing B vitamins too, it's a juggling act throughout the day which ones you can take with each other! It has taken me so long to sort out my thyroid that I have not tackled the menopause yet (I am 55 and have been going through it for a couple of years) but armed with this information I may pursue it now. I am not sure I have Hashimoto's as I am pretty sure I was tested at some point, I think the hypothyroidism crept on after years of being low on all these things and having a baby at 46. Could my WBC be low for any other reasons? I certainly don't feel as if I have a good immune system, I have had covid twice despite all the jabs (!) I put this down to low vitamin D which I am now taking again. It seems I can't stop taking all these things as the levels go down, so maybe I should just accept taking them for life.
Yes, many of us have to supplement for life. The good thing is once good levels have been accomplished and gut issues improved enough for good absorption, sometimes a multivitamin maintenance dose can be enough to continue.
If you don't have stomach ulcers I found Betaine + pepsin (hydrochloric acid) improved nutrient absorption hugely. You just take with fat/protein heavy meals.
I was diagnosed with osteopenia aged 42, I was heartbroken to be honest. But I am on T3 despite that. I also take HRT now for my bones and vitamin D, K2 and calcium. But most importantly, I work out regularly, including body weighted resistance. I don’t know my bone density now, I have a scan next week because I choose to bury my head on it. But my point being my endo knows about my bone density but still prescribed my T3.
Are you taking HRT? I would discuss this with your GP (might’ve worth looking at Dr Louise Newsons website (newsonhealth) first. The other important thing, as others have said, is weight-bearing exercise - so that’s another thing you can do to help yourself in a positive way.I’ve had very suppressed (0.05) TSH for years and an attempt by a GP to reduce my Levo a few years ago left me v unwell (I never fully recovered). I got a bone scan at that point (before they would put my Levo back up) and the results were excellent. I have done weight training for many years (lifting quite heavy - women often shy away from this but shouldn’t!) which I’m convinced has helped. I’ve recently started HRT too because there’s lots of evidence it’s important in the prevention of osteoporosis among other things. So there’s definitely positive action you can take.
I am way post menopause. It started when I was 37 and hell fir about 3 years. I think I deloped hashimotis aroubd the same time, but was diagnosed with chronic fatigue and left to rot. I don't think hrt will help me now as I've been past the end of menopause for over 10 years.
My TSH is always close to zero no matter what I do. It's about how you feel. going against what my body tells me in favour of what the endo says....and been really poorly. Quality of life is everything. Most endos don't do a full thyroid panel to get the complete picture of what's going on. Do your own bloodwork and do what's right for you and maybe that means getting a thyroid friendly doctor.
I suggest you get hold of your actual DEXA scan results. It sounds as though you have some degree of bone thinning but in the osteopoenic range. The scores will show bone density measurements from your hip and your lumbar spine. T-scores will show the loss of bone density relative to a woman with peak bone density and the Z-scores will compare you with women your own age. This must be what the consultant meant when he said you have 'early stage osteoporosis which is very severe for your age'. But you should know your actual results rather than rely on a characterisation of them.
There have been many discussions on the topic of bones and thyroid on the forum, particularly the issue of the effect of suppressed TSH on bone health and how it affects prescribing practices. It's worth a look through past posts. Many references to studies have been discussed. Depending on how much detail you want, Tania Smith has some thorough blog posts on the topic. If you go reading, you may quickly become frustrated because often the studies that show an association between suppressed TSH and increased fracture risk don't include FT4 and FT3 status. Speaking of fracture risk, it may be worth pointing out that feeling dizzy and faint puts you at increased risk of falling and possible fracture.
There's a lot of information out there on natural ways to promote your bone health. As has been said, weight bearing exercise is important, but only possible with adequate levels of thyroid hormone, so a bit of a catch-22. Working on strength and balance is a good idea regardless of thyroid status. If you're looking for a silver lining, many people don't even know there's an issue with their bone health until they fracture and are sent for a scan. At that stage it can be much more difficult to address. Early screening gives you the opportunity to be proactive. For post-menopausal women the greatest decrease in bone density comes in the first 10 years after menopause. But there are secondary causes of bone thinning and if your follow-up scan shows a significant decrease those should be investigated. The follow-up scan should be done on the same machine used for the initial scan.
Mrs. Clanger, I just noticed you posted on the bone health forum and got some good information there. I was going to suggest you do that, but I felt my reply was long enough already!
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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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