T3 and osteoporosis: Does anyone have information... - Thyroid UK

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T3 and osteoporosis

betulacea profile image
82 Replies

Does anyone have information on a connection of taking T3 (which makes the body more hyper) and osteoporosis?

I have been taking T3 brand name, since I was 16. I think I became hypo from breathing second hand smoke.

My former endocrinologist said I should be on T4 not T3. One of his reasons for this was that T3 could cause osteoporosis. My T3 script was quite high at 50mcg to 75mcg

(on a scale of 0 - 100mcg/day)

Since I usually took it all in the morning, it was dumping a massive amount into the body at once not time released. This caused states of hyperthyroidism as my TSH plummeted.

Now after menopause, I have a bad case of osteoporosis of the lumbar spine. T3 is the drug for me, it is responsive. So I have been thinking of different ways to take is moderately. starting in the morning with a little of the 50mcg and then

There are things I have learned:

1. all drs want you on T4. they can control that drug better. its half life is 4 times that of T3. It supposedly does not convert to T3 until the body signals it needs it.

2. family drs. do not like prescribing thyroid and they know little of how T3T4and TSH all work together.

3. it is way too expensive. my script was 65/month the same thing is 450/month brand name.

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betulacea profile image
betulacea
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82 Replies
jamesal0 profile image
jamesal0

Hi B According to Dr google between 50-80% of woman get osteoporosis of some form by the time they are 60 and 99% wouldn't be on T3 products. I'd take what your gp says with a gain of salt.

J

Welchy1 profile image
Welchy1

My endocrinologist recently referred me for DEXA scan citing concerns of osteoporosis because I had a surpressed TSH on T3. I'm a 44 yr old male who despite having Hashimotos tries to weight train 4x per week. Unsurprisingly my Bone Density score was slightly above average (for a healthy person). Personally I think Drs are sometimes unable to think for themselves and do not question enough... I also think there (especially in the UK) there is a desire to get most patients off of T3 dye to cost

Lynneypin profile image
Lynneypin

I take my ndt in 3 doses split evenly throughout the day.

I also have osteoporosis but I had other risk factors.

sue_b profile image
sue_b

Hi B, I had a TSH that was around 0.03 while taking T3 and T4. Both Free t3 and T4 well within range. I have seen an endo privately and am now on his list via the NHS. I had a high serum calcium in November and I did a little bit of research about higher turnover of bone if you are hyperthyroid. Not sure whether that was 'suppressed' TSH, as mine was, or if T4 and T3 need to be out of top of range to effect bone turnover. Anyway, I was in the midst of Pancreatitis and pending surgery so I stopped the T3 altogether and took what my Drs wanted me to take 125mcg T4.

In January my serum calcium was within range ( but dr didn't tell me what it was so I am not 100% confident about that due to my age and range changes as you get older) but my Parathyroid hormone was out of range, 7. 4 or thereabouts. and vit D was on low side at 40. So question is, did my calcium go down, due to lower turnover, as I was no longer taking T3, or do I have a parathyroid problem which can make calcium go up and down at whim, or do I have a relative vitamin D deficiency which is giving me secondary hyperparathyroidism. The jury is out, current advice to take vit D 1000mcg and see what happens.

Update this week, mood etc so awful I went to see endo privately and basically told him how I was, no holds barred and he said, " I didn't understand why you stopped taking your T3, start taking it again". When i said the reason I stopped it ( which I had told him about) was becuase of the possible link to higher serum calcium he said that as long as TSH is OK ( clarification, around 2, which it was when last tested on T4 only) then bone turnover will be fine. I said, how am I going to keep TSH at 2 while taking T3? he said by reducing levo to 100 mcg and taking 25 T3 split in to morning and evening doses of 12.5mcg. We'll see if that's the case soon.

He also said he has lots of patients who have undetectable TSH and he tells them of the potential consequences ( he didn't elaborate but I guess he was referring to calcium issues) but they ignore him :-) He didn't mention anyone developing particular problems as a result although that can't be ruled out, obviously, with the limited info available.

So, it will be interesting to hear what others have to say about this issue. I am , of course, only writing from my limited experience and what is true for me may not be true for others.

:-)

Marymary7 profile image
Marymary7 in reply tosue_b

I'm as interested as you for the same reason. I'm starting to think maybe NDT will be the answer without the bone loss... I hope. Have you explored this. 😎

sue_b profile image
sue_b in reply toMarymary7

Hi Marymary7

what is your story ? Have you had issues with Calcium? I have taken NDT in the past, for 2 years. TSH was suppressed but gradually, T4 and T3 were below range so I stopped and switched back to Levothyroxine and T3. As you know, our needs are all different so NDT may have a completely different effect for you. Reading the rest of this thread provides lots more info, Thank you, everyone :-)

Welchy1 profile image
Welchy1 in reply tosue_b

Hi Sue, I think everyone has different needs but for comparison I take 125mcg Levo and 25mcg T3... I do not split the dose and I take 4000ui D3 every other day. I also train 4x per week in the gym (within my limits). My Tsh is 0.03 and as I say Bone Density is above average (for now)...I have no idea which piece of research Drs are referring to when they say a supressed TSH is associated with osteoporosis.... I have asked them directly and they never tell me 😉

Angel_of_the_North profile image
Angel_of_the_North in reply toWelchy1

The only research is studies that don't differentiate between suppressed TSH with over range free thyroid hormones and suppressed TSH with in range thyroid hormones - my take it that it is more likely to be over range thyroid hormones causing the problem than low TSH, as I don't think anyone has researched the effect on TSH ON ITS OWN on anything except thyroid hormones. Does TSH do anything in the body apart from stimulate thyroid to produce hormones and influence conversion of T4 to T3? Who knows?

Caesard profile image
Caesard in reply toAngel_of_the_North

Correct, that's the research gap. Moreover, as a variation group, I would introduce central hypothyroid persons (ablation, TT patients) and as a variation method I would add another layer in respect of the TSH supression due to liothyronine influence in the feedback loop.

But the main question stays - what's the active or indirect role of TSH alone? We're in the dark on this one.

sue_b profile image
sue_b in reply toAngel_of_the_North

I see, so TSH may be suppressed but as long as T4 and T3 are within range there is no evidence which suggests there may be an issue with bone turnover? Can you have good Bone Density and still have high turnover? My calcium has now reduced to normal having stopped t3 but it is still not clear whether I have a parathyroid problem which may be causing the calcium variation, so the jury is out. A few more sets of blood tests should make thing clearer but if you have any other answers to anything related I would be grateful to hear of them.

sue_b profile image
sue_b in reply toWelchy1

Hi Welchy1, thanks for your reply.

Interesting, my TSH was around 0.2 on 100mcg levo plus 25mcg T3 last year before I stopped T3, so I anticipate that it will be around that mark when next tested. I don't weight train but have just been advised to start, to help metabolism/muscle mass/weight loss. Did you have serum calcium tests at the same time as Bone Density test?

Welchy1 profile image
Welchy1 in reply tosue_b

Sorry I missed this Sue. No I never had Calcium serum tests so can't provide any insight there I'm afraid

elaine2447 profile image
elaine2447 in reply tosue_b

You should find out what your calcium reading is. As you probably know all three, calcium, parathyroid and vitamin need to be taken from the same blood draw. I don't know where you live but in the UK, the GP's and endos are so ignorant about parathryoid. For example my calcium was 2.69 and described as mildly elevated!!!! Top of the range is 2.6 and even high end normal with an elevated pth is NOT normal. Story of my life PTH 11.02 but only mild!! They cannot be bothered here, all they want you to do is take bisphosphonates with the obvious bad side effects, but it does reduce blood calcium which is there excuse.

sue_b profile image
sue_b in reply toelaine2447

Hi Elaine, yes, I just got the result, it was 2.29, which puts me fairly firmly in the Vit D deficiency range on the app I am using for analysis but still potentially Parathyroid problem as the low calcium may be just a temporary variation. Need more results to plug into the app. ( app is 'calciumpro'). 2.5 is top of range for anyone over the age of 50.

Very sorry to hear of how they are managing your health. Do you mind mentioning how old you are? I gather there is a reluctance to offer surgery to anyone over a certain age as they don't think it is worthwhile. My mother had a diagnosis of Hyperparathyroidism for over 20 years and was never informed of this by her Doctors. It was only on her death bed that a Consultant mentioned it to me. She was experiencing extreme cramp and had a history of kidney and gall stones and very difficult behaviour ( high calcium in the brain seriously affected her). All of these symptoms would have potentially gone away if she had had surgery many years earlier.

Have you had your Parathyroids investigated? Do you have inorganic phosphate results? A retrospective research study I saw showed that an abnormal ratio between Corrected calcium /inorganic phosphate was evident in 80% of people who were later discovered (during investigative surgery ) to have a growth on their parathyroid gland. Please have a look at the research ( found by googling) if you haven't already. I'm afraid I would be kicking up rather a stink if they offered me biophosphonates instead of surgery!!!! Unfortunately the Calcium Pro app doesn't have inorganic phosphate as part of its analysis.

I know this is maybe slightly off topic but I hope that as I get to the bottom of what caused my high calcium it will help reduce any confusion/add weight to the theory that suppressed TSH is not an issue on its own, in relation to serum calcium levels.

elaine2447 profile image
elaine2447 in reply tosue_b

Hi, I'm really pleased you are getting somewhere now. I have all but given up, I'll be 72 next birthday so most likely deemed too old in this country and yet in the States they are happy to operate on someone in their 80's and 90's. They use a twilight anaesthesia rather than the general which we use. I have spent in excess of £6k since 2015 on a dreadful female endocrinologist in Hammersmith and Cambridge together with rip of Spire blood tests, scans, etc. etc. I did see a decent endo surgeon in London back in 2016 who was hesistant about opening up my neck mainly because he said he wasnt in the habit of taking someone's savings (he would have charged £15k) but in the meantime wanted me to see a friend of his who is expert in osteoporosis which I have severely. So along I went to see this other endo who was very nice, charming thought that charge was far too high and wasnt there anyone in the cambridge area and mentioned a surgeon who had long gone, so was out of touch and worse, suggested Prolia for say 2 or 3 years. I had at that time already suspected auto immune disorder so certainly wouldnt have risked Prolia apart from the dreadful side effects, then low and behold a couple of months later, the FDA gave out a warning about this drug that should not be left off as doing this caused rapid bone loss with subsequent rebound fractures. So now I am still struggling every day feeling awful with pain from fractured vertibrae which local hospital didnt bother to xray until 15 months after the event, my Hashimotos. In this country it's all about scans and if nothing shows up, not good but in the US, they take into account blood test results. Now I just dont feel well enough to travel to London let alone the States.

sue_b profile image
sue_b in reply toelaine2447

Oh dear, that's all very sad :-( Do you think you would have benefited from surgery many years ago? Like you I am willing to consider using my savings to get the surgery if it seems necessary.

elaine2447 profile image
elaine2447 in reply tosue_b

I doubt it years ago, as the endo surgeon thinks the osteoporosis probably started about 10 years ago. The blood tests I had I used to pass on to a very nice man in the US who was an olympic runner but had many fragility fractures and he then decided to produce his own supplements. It was only when I started taking that dreadful rubbish Adcal D3 prescribed here just for a short while and then went on to a decent calcium supplement that my blood calcium went up and it has stayed up ever since even though I dare not take supplements. It was he who said stop taking his supplements and get a pth test done. He is extremely knowledgeable, Keith McCormick and has written a book The Whole Body Approach and also produces supplements. He was so nice and would never take any kind of payment. osteonaturals.com/

betulacea profile image
betulacea in reply tosue_b

hi sue,

here are facts I know:

1. if your vit d is low it can cause your parathyroid to go high. so one cure for a high parathyroid is to take vit D

2. my sister had very high calcium levels so they found the fault was the parathyroid which was causing calcium to leach from her bones. the result: they removed the parathyroid gland .

sue_b profile image
sue_b in reply tobetulacea

Thanks for that :-) I did have high calcium at one point, hence the PTH and vit D test but calcium was back down for those tests. I am hoping my GP will run the tests again before I see the consultant in August, which will be 7 mths since I have seen him.

Gingersnap202 profile image
Gingersnap202

I take four 50 mcg tablets of Liothyronine (T3) a day , plus one 2 grain tablet of Armour. ... Yes, that's a very unusual amount of thyroid meds, but I am Thyroid hormone resistant and it takes this much to keep me from being miserable.. The point here is, I do not have osteoporosis.

Gingersnap202 profile image
Gingersnap202 in reply toGingersnap202

By the way: I have fallen hard twice, on concrete, and didn't break anything.

Phyloreardon profile image
Phyloreardon in reply toGingersnap202

Well said. I too have to take high doses but the alternative is unbearable. I thank God for lovely Dr Skinner everyday for introducing me to T3 x

ChristinaGasparri profile image
ChristinaGasparri in reply toGingersnap202

How interesting! Could I ask how old you are please as this might have a bearing on your lack of osteoporosis. Thank you

ChristinaGasparri profile image
ChristinaGasparri in reply toChristinaGasparri

I only take T3 25mg at night before going to bed at midnight and again at 7am in the morning. I make sure I do not drink coffee/food for an hour afterwards am. I have not done any tests for a few years as I go with how I feel. I have endured fibromyalgia which according to Dr Lowe (now deceased) is a thyroid problem. I went to see Dr Peatfield privately many years ago initially, went through his protocol for a year but went on T3 myself (ordered from abroad) and only T3 worked for me. I can now function reasonably well. My own GP is aware of what I am doing but cannot help me!). It is hard not to be supervised by a doctor but trust your own body and get informed. All the best! As far as osteoporosis is concerned, I agree with lady who says most women suffer from it after a certain age, I keep an eye on it, have had dextra test and am due for another one soon.

Gingersnap202 profile image
Gingersnap202 in reply toChristinaGasparri

I will be 80 my next birthday, in August.

penny profile image
penny in reply toGingersnap202

I take 8 x 25mcg T3 all at once in the early morning; no problems. I was sent for a dexa scan many years ago before starting on T3 as I was taking NDT at the time and there were no problems. I’m in my early 60s and would expect some bone loss although brought up drinking lots of unpasteurised milk so maybe better than one would expect. I too must have cellular resistance. I once took 500mcg by mistake and didn’t notice any difference.

betulacea profile image
betulacea in reply topenny

you cant be taking that much T3. the max dose is 100 mcg/day. at the rate you quote it is 200mcg/day

penny profile image
penny in reply tobetulacea

Why cannot I be taking that amount of T3?

in reply toGingersnap202

How did you manage to persuade the doctors to prescribe you that much?!

Oh, sorry, you explained below x

penny profile image
penny

Over-treating hypothyroidism does not cause hyperthyroidism, it is just over-medication; one is still hypothyroid. Hyperthyroidism is a separate condition.

All doctors seem to panic about T3, in my experience, and think that one is going to have a heart attack or lose ones skeleton. My GP has said that I am not hypothyroid as my tsh is always ‘in range’. If this were the case my 200mcg of T3 would kill me. Utter tosh. Now that my tsh is unmeasurable off the bottom of ‘the range’ he is in a funk. I’ve explained that taking T3 would lower my tsh and that using the tsh as a measure in this case is useless. (It’s near to useless anyway.). I do not advocate this but I bypass my doctor, if I did not I would still be sick.

Gillybean1 profile image
Gillybean1

Hi Betulacea,

I was diagnosed with osteopena way before thyroid medication started. The most forward thinking was that this was as a result of chronic gut malabsorbtion over many years as a result of a lack of T3 into the cells.

If you can get your stomach acid in tip top condition from the start, and check your D's, Iron,Folates, walk lots or get a rebounder and preserve what you have of your bones, oh and stay away from carbonated drinks.

I agree with others words here, that many have osteoporosis without having thyroid issues.

Every best wish, G.

thyr01d profile image
thyr01d in reply toGillybean1

Hi Gillybean, does this mean sparkling water is bad? I drink nothing with sugar/sweetener in it, occasionally a little orange juice but do love a glass of sparkling water. So hoping it's not the carbonating that's bad news but all the other unhealthy ingredients in fizzy drinks.

Gillybean1 profile image
Gillybean1 in reply tothyr01d

Hi thyr01d,

Yes it is the carbonated drinks that are the problem. I understand that the occasional carbonated drinking is ok, but not daily as it draws the minerals out of our bones.And also lowering our stomach acid,so not ideal either.

It took me awhile decades ago to get off sparkling water, i did it gradualy by adding a slice of lemon or lime to my jug of water.

Every best wish G

vocalEK profile image
vocalEK in reply toGillybean1

According to this, a study found that colas, but no other carbonated beverage, was associated with osteoporosis. ackermancancercenter.com/bl...

And then there is this one, that addresses various acids in the beverages. popsci.com/scitech/article/...

thyr01d profile image
thyr01d in reply tovocalEK

Thanks very much vocalEK, so glad I can safely drink sparkling water ... it seems such a small pleasure! :)

Gillybean1 profile image
Gillybean1 in reply tovocalEK

thank you vocalEK

in reply toGillybean1

That's awful to hear...I drink 1.5 litres of sparkling water per day...always thought as Iong as I avoided sodas that would not be problem. Looks like I need to find an alternative.

vocalEK profile image
vocalEK in reply to

See my reply to Gillybean1 above (links work there):

According to this, a study found that colas, but no other carbonated beverage, was associated with osteoporosis. ackermancancercenter.com/bl...

And then there is this one, that addresses various acids in the beverages. popsci.com/scitech/article/...

Gillybean1 profile image
Gillybean1 in reply to

i guess it just about moderation cat68, a little bit of what you fancy does us good, but keeping stomach acid tip top is mentioned repeatedly in regard to thyroid function and good health generally.

Every best wish G.

T3 is necessary to build bone as it is associated with creation of osteoblasts. T4 is associated with bone destruction - osteoclasts. However you need both to break down old bone and build new. T3 is the active thyroid hormone and does not "make the body more hyper". In a healthy person, T4 converts to T3 as needed, but many people have a genetic defect that interferes with conversion so they need to take T3 directly. As long as your free t3 is near the top part of the range, but not over, you are at no more risk of osteoporosis than anyone else. TSH is not a thyroid hormone and having low TSH (especially when on medication) does not mean that you have hyperthyroidism - that is when free t4 and free t3 are over range. If you are worried about taking a large dose of T3 (and yours isn't that large) at once, split it and take it 3 or 4 times a day. T3 is expensive in the UK and t4 is very cheap - that's why they want you off T3.

Gingersnap202 profile image
Gingersnap202 in reply toAngel_of_the_North

I am so fortunate. My late husbands Union still covers my Medicare Supplement Insurance. If it didn't, I would be paying $500.00 a month for my T3.

in reply toAngel_of_the_North

What really frightens me is that I've come across doctors who did not even know what T3 is...and by that, I mean both the thyroid hormone and the drug. Not endos, granted, but still...and the few endos I've had to deal with have just dismissed T3 as irrelevant as long as your TSH is in range....

betulacea profile image
betulacea in reply toAngel_of_the_North

I dont know why T3 is more expensive. A dr. does not care about a more expensive drug they dont pay for it. The T4 half life is 1 - 2 days. they have more control over results. T3 half life is 25 days. if anything it is more about bloodwork, their liability coverage.

T3 in the US is just as high. the brand name cytomel is over $300.00 / month and about $250 for generic.

Angel_of_the_North profile image
Angel_of_the_North in reply tobetulacea

The cost of meds comes out of the doctor's budget as far as I know, but they get some extra funding points for prescribing things most people don't need like statins and anti-depressants. Other countries will be different and so will there prices for T3. It's almost impossible to sue doctors unless they kill a lot of people as the GMC looks after its own (although there has bee a recent court case that might change that).

dizzy864 profile image
dizzy864

In 2012 my gp moved to a different surgery and I was transferred to a very nice doctor who was coming up to retirement. After my first annual blood test he told me very honestly, I thought that he did not feel competent to treat me as I was on T3 - I had been for the past 8 years. My TSH was suppressed. He wrote to an endo at my local hospital. the reply was that I should cut my 3 x 20 mcg of liothyronine per day to 3 x 10 mcg per day. I was to be retested in 6 months in the hope that my TSH had increased. I'd always taken the doses separately. I was told to pick one and halve it. At that time I was really fit, slim, healthy and extremely active.

This was the start of my on going troubles. I halved the night time dose. Very quickly I became really unwell. I was told I had to persevere for at least three months but I would be well again within a month. Six weeks later I was really ill and could not stand it any longer. i put my dose back to what it was before. My doctor then told me he would continue to prescribe the higher dose only if I agreed to have a full body scan to check for osteoporosis. I had the scan. I had no sign of any problems and in fact my bone density was above normal for my age ( 58 ). A little research has taught me that eating lots of vegetables helps bone density - I'm a vegetarian.

The problem is that the consultants letter has stuck with my medical notes. That doctor retired a year later and I was switched to a different gp again. This guy is like a dog with a bone. When I had my next annual blood test, he ordered me to reduce lio. Stating he would not continue to prescribe the higher dose. I tried for three weeks this time before putting the dose back up. I was then ordered to reduce levo instead. I tried again, but again became really ill. I lasted a month but then went back up.

The doctor then put a note on my medical file - stating that I am severely over medicated but it has been agreed to leave me on my current meds. He's now a senior partner and his word is GOD!!

I have really been suffering for the past four years. Getting worse each year as my T4 and T3 levels have fallen. Last week, I finally managed to persuade a different doctor to increase my levo. It's early days but I am already less tired and mopey.

The consultant never actually said I was over medicated - he just said I should reduce lio!! I think this was just to save costs and I've suffered a lot because of him.

If you're body needs T3 and many of us do, then I believe we have no choice but to continue with it.

Gingersnap202 profile image
Gingersnap202 in reply todizzy864

I think they mean well, but simply were not properly taught about hypothyroid issues. ...The Doc, who started me on NDT at age 59, retired a couple years later and the new Doc was "horrified" at the amount of NDT I was taking. Four grains of Armour. He immediately told me to cut that in half. I didn't want to, but I had no prescription for the old amount, so hadno choice. Oh my goodness, I was SOOOO miserable for a year! Chronic Fatigue and repeated UTI's which I had never had before. ... I finally told my Doc that if they didn't put me back on the amount I had been on a year before, that I was going to go down and "Jump off the Poplar Street Bridge" (A bridge over the Mississippi River.) Apparently, he didn't want to be responsible for my untimely demise, and put me back on what I had been on. ... As time has gone on, my meds have been increased and my current Doc is just a sweetheart about giving me what I need. He figured out I am thyroid hormone resistant as treats me accordingly.

jgelliss profile image
jgelliss in reply toGingersnap202

It's a Blessing when one finds a Dr that Listens to patients and Understands and Cares how to dose thyroid depended patients . It's very Unfortunate that thyroid patients are not treated accordingly . Truth be told many Dr's/Endos don't understand nor *Get It* .

Gingersnap202 profile image
Gingersnap202 in reply tojgelliss

My GP told me that he had only seen one case of thyroid hormone resistance in all his years of practice. I didn't argue with him, as they have been taught that it is rare. It isn't of course. It's actually epidemic. ... I'm planning to make my point next visit by telling him that cancer was once considered rare too. Cancer is epidemic now too.

dizzy864 profile image
dizzy864 in reply toGingersnap202

I find endos are worse than doctors - they are so arrogant. The last endo I saw told me to stop my 3 x 20mcg of lio immediately. He did not even agree to my increasing levo. I said that was impossible. He told me that a small number of people do need T3 but I am not one of them!! I asked how he knew I was not one of them - I had improved with one tablet a day and got my life back completely when I was given 3. He repeated, louder, "You are not one of them." I persisted and said ok, but why am I not one of them. This time, he banged his hands on his desk and shouted at me, " You are not one of them." My husband and I stood up and walked out. We had driven a 90 mile round trip to see him because my gp had insisted I see an endo.

It was only when we walked into his office that we realized that we'd seen him 6 years earlier at a different hospital. He'd been almost as rude to us then! Unfortunately for us, he had quite a common name!!

Marymary7 profile image
Marymary7 in reply todizzy864

What a horrible man!

JOLLYDOLLY profile image
JOLLYDOLLY

HI, I am post menopause and have been on thyroid meds all my life. In the last twenty years I have been on combination of 200 mcg of T4 and 20 mcg of T3. I think it was because my meds were dramatically reduced prior for a few years until they realised that my original dose of 200 mcg of T4 was what I should be on.

Three years ago I had to go and see a Endo (ha ha) only because they were trying to take the T3 off me. Told me a lot of cock and ball about heart conditions and osteoporosis, so sent me for blood tests and a bone scan. Her scare mongering was unfounded and I do not have problems with either my heart and at low risk of fracture.

However, I do have problems with my lower back, regarding pain which feels like I have been cut in half sometimes and affects my breathing. The so called caring professionals have done nothing except tell me to lose weight and get off my arse basically. But due to recent complications with other things, they think I now have sciatica?

The Endo I originally mentioned, is the one that accused my husband of being an enabler and I subsequently reported, only after she could not answer my question and that was "Do you know what it is like to have a thyroid condition?" She would and could not answer the question. Three years on, I am still on T3.

I for one, take everything they say with a pinch of salt.

The bottom line is, I think we are at higher risk of osteoporosis, but only because we have a thyroid condition and not the meds we are on. One pill does not suit all, as we are all different, some of us need a extra bit of help and some need meds to survive literally.

Take care :)

Kandahar profile image
Kandahar

Well, I’ve been on t4 for about 12 years. Up to then I had bones stronger than my age. Then, after breaking wrist in June 2017, had dexa test and I was just osteoporotic. So, I reckon it’s thyroxine that does it, no liothyronine! Now on latter and feeling so much better - brain fog lethargy etc. So much better. Of course, the osteoporosis hasn’t gone away. Perhaps someone could advise of how to strengthen bones? PLEASE!

Bettan profile image
Bettan in reply toKandahar

How interesting because all my friends who have broken their wrist etc have all been on levaxin NOT one has been on liothyronine.

in reply toKandahar

have you had vitamin and minerals tested - especially D3? Then need to be optimal.

In the UK we tend to be low on vitamin D because of lack of sunshine, and being hypothyroid makes that worse.

After advice from folks here and having to pay for a vitamin D test because the doctor's wouldn't do it, I found my D3 was low and have been on supplements. I showed them the results and was prescribed D3 and calcium. But I don't need calcium and the total D3 a day was only 800iu. Because of the added calcium I can't take enough prescribed tablets, so still have to buy my own. At the moment (after another D3 test showed that the level hadn't gone up very much) I am taking 8,000iu, ten times prescribed. Such a high dose (and some people need to take even more) means I also need to take vitamin K2 and magnesium, which of course the NHS won't prescribe!

vocalEK profile image
vocalEK in reply to

I order a 2-month supply of D3 5000 mg + D2 90 mcg from Amazon for $14.95. A 4-month supply of 200 mg. magnesium bisglycinate for $15.89. Hope this helps.

BadHare profile image
BadHare in reply to

Boron is important for bones, too. I eat chia seeds, or take a multimineral well away from magnesium & calcium.

JOLLYDOLLY profile image
JOLLYDOLLY in reply toKandahar

Have you been checked for vitamin D deficiency Kandahar? I would have thought with the results from your Dexa scan, that you would have been given them automatically. But nothing surprises me these days. I would definitely check it out.

You can always get some from the pharmacy/chemist, but you should get them on prescription to be fair. They are not very nice initially, but you get used to them after awhile. Just don't take them within four hours of thyroid meds or iron supplements - otherwise the thyroid meds in particular do not absorb very well.

Take care :)

Kandahar profile image
Kandahar in reply toJOLLYDOLLY

Yes, Dolly, and the reading was 60.3 whatevers. Although that’s in range the endo suggested I got out more - 30 mins a day. Think the subsequent gardening fitted that bill! However, also suggested supplements or oily fish.

B12 is fine and folate and ferritin. Someone commented here that the latter was too high but others have said not. The doc from Medichecks raised the subject that I could have iron overload, but endo doesn’t thinks relevant. Interesting anyone?

Kandahar profile image
Kandahar in reply toJOLLYDOLLY

Forgot to say that GP wanted to put me straight on alundronic acid. It made me really ill so just had my third Denosomab jab. Sorry about spellings - doing from memory.

JOLLYDOLLY profile image
JOLLYDOLLY in reply toKandahar

What is the alundronic acid for? That is a new one on me. I have pernicious anaemia but I also had iron anaemia for a long time, in my horrible menstruating days. I know at one point, I was taking folic acid for a short while, something to do with the plasma?? Also taking iron supplements. Was taking too many for a while, because it showed up on my liver function test. I knew it would be high, but the GP insisted on me taking it and then went into a mad panic, Order ultrasound and going on about hepatitis c and that I had antibodies in my blood - well hello, I have a thyroid condition!! Doh!

I have no faith in GP's or the hospital as far as I am concerned. Today, I was recalled for abnormal mammogram, so I have had tummy trouble all day. The dr thinks I will be ok, but is seeking a second opinion. Talk about keeping a girl on her knees waiting. So not sure if I have to have a biopsy yet.

At first, she mentioned my weight and my sleep apnoea being weight related. So I stopped her in her tracks and said "I don't choose to be have a weight problem you know but I have a thyroid condition and have been messed around with my meds. Regarding the sleep apnoea, they think I have always had it, but had gone undetected for so long, it is not always about weight, as I have only gained weight, since my doses were messed around. I don't drink or smoke" She just smiled and before I left, she congratulated me on my recent weight loss ?? So why say anything in the beginning? Patronising old bag, looking over her glasses with her slim figure. The abnormality in my boob, is not fatty tissue ironically. I just get so fed up being fat shamed and patient shamed.

In answer to your question about Vitamin D and D3, I always thought the D3 was the medication, but I may be wrong.

If you ever need a chat, please feel free to message me, take care xx

Kandahar profile image
Kandahar in reply toJOLLYDOLLY

Wrong spelling doesn’t help - it’s alendronic acid. It’s meant to help the bones when you have osteoporosis. You are meant to take it once a week and sit up for 30 mins and no food or drink or moving around. It made me very ill - like very bad flu. So I now have jab of Denosemab every six months.

But people on this forum have commented that it’s not good for you...hey ho! But then that seems to be the case in so many things.

Mind you the forum has also said that when the thyroid has been sorted out, the cholesterol improves. Mind you, I’m inclined to think that the bad press is a hype, but I know the dr will try to insist I go back on it. So that’s the next problem.

JOLLYDOLLY profile image
JOLLYDOLLY in reply toKandahar

Thanks for explaining. I have never understood the cholesterol side, as mine has always been low. I was led to believe that most of our cholesterol was genetic and only a small percentage comes from food?? I am taking everything with a pinch of salt. x

Angel_of_the_North profile image
Angel_of_the_North in reply toJOLLYDOLLY

Low cholesterol increases your risk of dementia and means you don't make enough hormones. O don't think anyone has researched a link with bone health

JOLLYDOLLY profile image
JOLLYDOLLY in reply toAngel_of_the_North

All I have been told, is my cholesterol levels are normal and not high. If it is too high then you are at higher risk of cardiac problems and if too low, you are at high risk of dementia it seems - none of us can win!

With the type of dementia my mum had, I have a 36% of getting it anyway. But none of us really know what will happen, so I do not worry. All I know is that we all have a guaranteed end.

Life is too short to worry and at the end of the day, we all thrive for quality of life.

Take care

Angel_of_the_North profile image
Angel_of_the_North in reply toJOLLYDOLLY

High cholesterol may be a symptom of cardiac problems bu there is no real evidence that it is a cause. If it is, I'd rather die quickly of a heart attack than slowly from dementia

JOLLYDOLLY profile image
JOLLYDOLLY in reply toAngel_of_the_North

That could be the same said of low cholesterol with dementia, none of us really know, regardless of the research and studies done.

But saying that, after seeing my dear mum suffer for seven years with dementia, which was as equally heartbreaking as witnessing my little sister having cardiac arrest in front of me, being resuscitated, only to witness her life support being switched off a few days later. None of us know, even the professionals can not really guarantee she was not in pain and that my little sister did not suffer at the end. The trauma of being resuscitated was traumatic enough, so I do not know what is worse.

If my time comes soon, it will be of a broken heart and hopefully in my sleep.

Best wishes

elaine2447 profile image
elaine2447 in reply toKandahar

If you are on denosumab, it is a lifetime commitment as the FDA gave out a warning in January 2017, that when left off, it causes rapid bone loss which can result in rebound fractures.

sarosent profile image
sarosent in reply toKandahar

I found the book Your Bones by Lara Pizzorno, very informative. She warns about the drugs, and has suggestions for natural ways. If you purchase it, get the most updated version.

Kandahar profile image
Kandahar in reply tosarosent

Thank you x

sarosent profile image
sarosent in reply toKandahar

There is a Bone Health forum also, where that book was recommended:

healthunlocked.com/bonehealth

dizzy864 profile image
dizzy864 in reply toKandahar

I read that the best way to build bone density is to eat lots of vegetables.

I really hope it s true because then as a vegetarian at least I m doing that right.

elaine2447 profile image
elaine2447

I understood it was the other way around and possibly T4 can damage the bones and or being hypo.

dizzy864 profile image
dizzy864

Doctors have completely messed me up. 3 years being treated with hrt for prem. Menopause when i was hypo at 40. Then at 55 treated for 5 years for fibromyalgia when i was vit d deficient. Then in 60s told I was severely over medicated because ths was suppressed by T3 when I m severely under medicated. I now have no faith in doctors.

Been suffering for 5 months with teeth ache. Told it's sinus infection, lots of antibiotics then jaw problem. Been referred URGENTLY to max face on 2nd April. Learnt yesterday it's still in triage. If urgent will be another 4 weeks before I see someone. Probably hypo symptom anyway as it's getting better with increase Levo.

Doctors and nhs are a joke.

guysgrams profile image
guysgrams

T3 doesn't cause that unless you are hyper from what I understand. There are lots of people out there in the world that take T3 only and don't have issues. That's a scare tactic just as saying we will have a heart attack from taking T3 only.

JOLLYDOLLY profile image
JOLLYDOLLY in reply toguysgrams

I agree, I think they are still making up stories due to the price of the T3. :)

Kandahar profile image
Kandahar

What is difference between vit D and D3, please?

Pinkpeony profile image
Pinkpeony

As a 77 year old woman who has just been diagnosed with 98% bone loss I found this thread confusing and upsetting . It might be this , it could be that . Nobody knows .

My consultant has offered me injections of the evil drug that gets such a bad press . At my age , what choice do I have ? Pp

thyr01d profile image
thyr01d in reply toPinkpeony

Dear Pinkpeony I am really sorry to read your post and understand why this thread has upset you. How about looking elsewhere, not in the thyroid section, for better, clearer information?

Pinkpeony profile image
Pinkpeony in reply tothyr01d

Thank you for your kind words . I have done this Pp

ncbi.nlm.nih.gov/m/pubmed/2...

This is an overview of thyroid and bones if of any interest!

fortunata profile image
fortunata

I’ve been on 60mcgs of Liothyronine for three years. I take 40mcgs in the morning and 20 at night. I do plenty of exercise, including weigh training, walking and yoga.

My endocrinologist told me exactly the same thing... that I was at risk of osteoporosis. But I had a DEXA bone scan done that showed my bone density is above average for my age of 59.

Personally, I don’t think Liothyronine causes osteoporosis. I think with some women it happens with increasing age.

tj61 profile image
tj61

Hi, the endo has put me on 20mcg T3 daily in addition to T4 and recommends splitting the dose and taking it twice in the day to more closely mimic the way the body works normally.

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