DEXA scan result Poor. What to do about T3? Endocrinologist unhappy with suppressed TSH even before DEXA. How do I advocate for myself now?!

[ChronicTonic]

Afternoon All,

I’ve just received a letter from my Second Opinion Endocrinologist with the results of my first ever DEXA scan. She is not happy.

T Scores (no idea what any of this means, btw!):

-1.6 L spine, -0.4 total hip, -0.9 NOF

A few months back I was told by Endocrinologist One to reduce my T3 intake by 1/4 tablet (6.25mcg) and in return she would increase my T4 by 25mcg, which she did to 125mcg Levothyroxine.

Then ensued months of increasingly bad health and thyroid-related symptoms. I felt like I lost months of my life and regressed years in terms of treatment.

I then had a blood test (discussed in my previous post, results pasted again here, below*).

At a subsequent appointment last month Second Opinion Endocrinologist gave me the option to reduce either my T3 or T4, so I chose the T4 and went from 125mcg to 100mcg.

I went home and posted on this forum (again, see previous post).

The following morning I got up with the kids as always, and then… went straight back to bed - which I’d been doing since I dropped my first dose of 6.25mcg T3 for Endocrinologist One when all my hypothyroid symptoms increased (obvs!).

I then remembered a comment on my rant on this forum the evening before, which was something along the lines of, “I realised long ago I could either please myself and feel well, or please the endocrinologist and feel awful” (not exact wording). She was so right!

With that in mind I disregarded Second Opinion Endocrinologist’s advice to drop the T4 by 25mcg, and instead went back to the dose I was on many months previously before Endocrinologist One’s change (she said, Drop T3, increase t4).

I’ve basically completely ignored both endocrinologists and gone back to where I was a year or so ago - when I felt a lot better than today.

Anyway. Now I’ve had a DEXA scan through saying my hip bones are normal but my spine shows a low bone mass for my age. Argh!

Meanwhile, I’ve increased the T3 and ignored all endocrinologist advice and in the past few weeks have felt loads better.

However, due to the DEXA result, Second Opinion Endocrinologist will now have ‘ammo’ to be ‘I told you so’ about taking T3. She’ll be furious I’ve ignored her and gone up a dose of T3, too

For myself, I don’t want to risk further loss of bone mass (whether due to the T3 or not) but I do want to stay on the T3 - and at the higher dose I’m back on now.

Soooooooo… how do I look after myself and my low thyroid, my low bone-mass spine (which could be nothing to do with the T3)?

And how do I advocate for myself with Second Opinion Endocrinologist? She’s going to hate me, and in any case I don’t want to lose more bone mass!

I have been on HRT for a couple of years. I have taken T3 for about 5 years

*Serum free thyroxine 
16.4 pmol/L

Range: 11.1 - 22 pmol/L


Serum free triiodothyronine
 5.6 pmol/L

Range: 3.1 - 6.8 pmol/L

Serum thyroid peroxidase Ab 
<9.0 iu/mL 
Range: 0 - 34 iu/mL 


Serum TSH 
0.01 mu/L

Range: 0.27 - 4.2 mu/L

[SlowDragon Administrator]

For good bone density we need to be active

Being on a dose that has you on sofa or in bed most of the day is not good

Also LOW Ft3 can cause poor bone health…..not just high Ft3

Osteoporosis and Ft3

thyroidpatients.ca/2018/07/...

[Omze in reply to SlowDragon]

No one in these forums talk about thyroid hormone receptor and the down hill receptors , what if u have normal range t3 and still have symptoms , problem is not to increase t3 but to make thyroid receptor and down hill receptors to be receptive rather than change t3 doses

[helvella in reply to Omze]

You are welcome to explain about down hill receptors.

[waveylines]

Hello Abi. I was told by three well regarded endos that so long as I keep my thyroid hormones in range no harm can be done. Your thyroid hormones are in range.Secondly there is no proven body of evidence saying that a suppressed TSH when thyroid hormones are in range causes bone density loss. Ask them for the body of evidence.... thry won't be able to.produce it as it doesn't exist!! You need to see a bone specialist not Endo!!

First have they checked your vit D level? Too low and you cannot absorb calcium and your bone density will drop and you just excrete all the calcium in your diet. (This happened to me) Secondly have they checked your parathyroid glands?

Honestly I would not put up with their nonsense anymore....

[radd]

Abi-Abster,

I would say it has not yet been proven that a low TSH combined with thyroid hormones well within range, reduces BMD. If they argue, ask for the evidence.

And follow up that it is very important that bones have adequate T3 (not too high or too low) for optimum process of breaking down old bone and regenerating new growth, that can be maintained. I was diagnosed osteopenic 10 years ago and have not only halted further loss but managed to reverse results evidenced by further DEXA scans.

My protocol is to keep FT3 levels optimised for my individual need, keep good levels of sex hormones oestrogen, progesterone and testosterone, keep good calcium levels through diet, and pathways working well with supplements Vit D + K2, and magnesium, and do weight bearing exercise. About 18 months ago I also added Bone Balance medical food supplement which has been scientifically proven to contain the right collagen to encourage better bone health.

Do not be bullied into reducing your FT3 levels if they aren’t above range and this level is making you feel better.

Members give more experiences here and I have given a detailed reply about half way down the page. healthunlocked.com/thyroidu...

[Bean101 in reply to radd]

I am interested in the bone balance medical food supplement that you take.. would you mind sending me a link please

[dottyb09 in reply to Bean101]

bonebalance.co.uk/

[josephinius1 in reply to radd]

Who is a bone specialist? Serious question. I think I need to see one too, but...I'm also starting to think doctors are...too busy. That's what it is, just too busy, and if you're reasonably functional, not really worth their time.

[waveylines in reply to josephinius1]

There should be a Metabolic Bone Centre in your NHS area. If you Google it you should find ones near you. Your GP would need to refer you..

[josephinius1 in reply to josephinius1]

Ah. I'm in the US, Portland, OR. I don't think anyone in these parts truly specializes in bones. Thanks, though. 😉

[jimh111]

Here is a good description of T-Scores niams.nih.gov/health-topics... . The Z-Score reflects your bone density for someone of the same age.

I assume your doctor has measured your calcium and PTH levels, these are most important for bones.

You are on a highish (100mcg LT4, 18.5mcg LT3?) dose so it's good IF you can reduce a little.

Nearly all the studies into thyroid status and bone density looked at people who have been diagnosed with hyperthyroidism. In some of these cases there is concurrent parathyroid damage which messes up the results, as the parathyroids control bone metabolism. The few studies that didn't include thyroid patients tended not to show a link unless the levels were very high.

As for what you can do, having enough calcium and magnesium is one step, although not many people are calcium deficient. Load bearing exercise is very good for the bones, going to the gym or walking and lifting bags of sugar etc.

Your fT3 results may be higher than the blood test suggests if you left a long time between your last dose and taking the blood.

[gabkad in reply to jimh111]

I would say that measuring parathyroid hormone levels is right up there with unicorns.

The Canadian osteoporosis website says that many women don't eat enough protein and that's part of the problem. Keeping slim and living on salads just won't cut it.

[jimh111 in reply to gabkad]

PTH has a central role in calcium homeostasis and bone formation. A quick search found some info on it in the Canadian Osteoporosis website. Nutrition is important but it can be vegetarian, a buffalo has pretty good bones.

[Charlie-Farley]

Everything above

They are working off old flawed opinion and poor quality research - they have latitude to treat to make you well not just to make the lab work look good 😉

NG145 States (page 2)

Your responsibility

The recommendations in this guideline represent the view of NICE, arrived at after careful

consideration of the evidence available. When exercising their judgement, professionals

and practitioners are expected to take this guideline fully into account, alongside the

individual needs, preferences and values of their patients or the people using their service.

It is not mandatory to apply the recommendations, and the guideline does not override the

responsibility to make decisions appropriate to the circumstances of the individual, in

consultation with them and their families and carers or guardian.

The problem is they are all in a very robust echo chamber and have all been taught the same wrong things - takes a brave soul to stand up and say "Are you sure we are getting this right?"

[Charlie-Farley in reply to Charlie-Farley]

In addition I often share this extract which straddles page 37 and 38. Best to download pdf.

nice.org.uk/guidance/ng145

this is recommendations on treatment

The committee agreed that the evidence for natural thyroid extracts showed no benefit over levothyroxine. The committee also noted that the proportion of T3 to T4 is higher in natural thyroid extracts than produced in the human body and the adverse effects are uncertain. Natural thyroid extracts are an unlicensed medication in the UK and overall the committee agreed they should not be offered.

The use of T3 in combination with T4 or alone is also discouraged.

So they discuss thyroid hormone profiles in Natural thyroid extracts as being different from the profile in a human and that it could therefore be deleterious WHILST PUSHING MONOTHERAPY and they are so down the rabbit hole they do not see the contradictions in their own advice.

The T3 debacle still influencing advice because nobody wants to admit the withdrawal of T3 was a financial decision not a clinical one

theguardian.com/business/20....

[humanbean in reply to Charlie-Farley]

file:///C:/Users/pjros/OneDrive/Desktop/HYPOTHYROIDISM/NG145%20thyroid-disease-assessment-and-management-pdf-66141781496773.pdf

The above link is to a file on your PC, which only you have access to, it is not a link to a file on the internet.

Can you remember where you first got it from?

[Charlie-Farley in reply to humanbean]

Good grief thank you for pointing out.

Link added to NG145 - best to download pdf for anyone reading the string- I’m saving pertinent documents on WhatsApp for my next battle - new surgery only does TSH 🙄

[Hidden]

Hey there,My endo used to have me on 50mcg of T4/ Levothyroxine and 60mcg of liothyronine/T3. I felt pushed.

However I entered peri menopause and eventually menopause, and I ended up stopping T4 and on T3 only 62.50mcg daily split into 3 times aday. I feel better without T4 for what ever reason.

I'm on hrt, Utrogestan progesterone and estrogen spray. Helps my bones and joints skin hair gums vaginal tissue moods.

Between my T3 and hrt I feel great.

My Ft3 is slightly in higher range but in range.

I take body temp and Pulse BP daily.

I take all essential vits and minerals for hypothyroidism and my B12 injections for pernicious anaemia.

No alcohol no gluten no breads cakes, no sugars, no dairy. No smoking.

Plenty veg meats eggs, water.

I weight train 2 times a week, do stretches, and walk.

Can't do anymore. I'm in my late50's now.

I'm ok because of myself care.

No matter what thyroid hormone a person takes you have to take care and do good things for your body and mind for the thyroid hormone to work well. Can't expect it to be a miracle cure on its own if we do bugger all else to support the thyroid hormone get into the cells.

I don't watch my bloods much anymore and I stay away from endos and GPS who made my life miserable Tsh watching or complaining about a suppressed free T3 at 0.1

All the best.

[buddy99]

Loss of bone density can have many causes, low TSH is not proven to be one of them. I got osteoporosis with normal TSH and very low FT3 (as SlowDragon pointed out, being bed ridden does nothing for your bones), extremely low vitamin D (doctors refused to test) and high parathyroid hormones. I broke several bones due to falls caused by low blood pressure, vertigo and muscle problems. All due to being undermedicated. My TSH is now quite below interval, my vitamin D is right on and since I started taking T3 my parathyroid hormones have also miraculously fallen into place (together with a previous very low GFR, high LDL and elevated CRP). I refuse to have further bone density scans based on what I have learned. I have the energy (most days) to walk or work out. I feel great. I hope nobody will ever take my T3 away again. It would be the end of me. And to all heck with the TSH as long as the FT4 and FT3 are within interval.

If I were you I would fight tooth and nail for my thyroid hormones that make me feel so much better. As has been suggested, ask for the research papers to back up the doctor's claim. If they can produce them (they are out there, unfortunately), which I doubt, there are just as many that deny the influence of TSH on bone loss and emphasize the thyroid hormones within interval. Both too much and too little have adverse effects on bone density. Even if a low TSH would cause some bone loss (from what I understand only 15% of fractures are caused by low bone density and 85% by falls), it would be wise to weigh the risks against the benefits. Once the thyroid is shot, we will never be able to get it just as right as our healthy body did. So all we can do is try to get as close to the natural state as possible. And that is different for each of us. Best of luck. Don't back down when it comes to your health and wellbeing.

[Angel_of_the_North]

Hmmm T3 is needed to build bone (osteoblasts), while T4 is associated with bone breakdown (osteoclasts), although it's not that simple - old bone needs to be broken down and replaced by building new bone: ncbi.nlm.nih.gov/pmc/articl...

[annnsandell]

I have not kept up with your journey posts.

You are obviously familiar with the theory that keeping TSH suppressed (0.01 mu/L is) for a long time causes low bone density, (mine is fine after over 10 years) although, short on evidence, ask for it. But there are, of course, other known contributing factors. Not enough exercise particularly walking, low calcium or Vit D, smoking, drinking alcohol, early menopause, large gaps between periods, low BMI, taking steroids, or is there a family history of Osteoporosis?

If this is your first bone density scan, it is hard to determine whether this was the case before T3. -1 to -2.5 is mild and above -1 poor so hip- 0.4 as you say is not good.

If your T3 is in range from taking T3 there is obviously room to reduce T4 but I am no expert. Check other factors and refer to Orthopedist.

[Lovecake]

I nearly had a fit when my DEXA scan results showed I have osteopenia mid last year. My endo requested a scan in 2017 and it was not done. I take levo and some T3. I’m on HRT patches (I had a full hysterectomy in 2010 due to a growth). My calcium levels have never been low when tested but my vitD was 21 back in 2016. I’ve had years of being immobile due to low thyroid levels and bad migraines. I would say that has caused more issues, including the low bone density. My cousin (no thyroid issue) has severe osteoporosis, diagnosed in an X-ray last year with a fractured back. She was advised to do some weight bearing exercise. She is more active than me. My doc just prescribed calcium tablets twice a day! I couldn’t fit 2 in due to it interfering with my thyroid meds, But even taking 1 was awful. Gave me a swollen tummy and terrible wind. I definitely think we have better advice on here. I take vitD, k2 and magnesium. My endo asked the doc to test my vitD, B12 and folate levels with next thyroid test. You’d think it should have been done last July…… so they can’t be that bothered, can they?

It might be worth seeing if anyone in your close family also has bone density issues. I think you should follow the advice above, get all levels good and feel better. Then you will move more and that will help your bones. Good luck, I’m sure you will get there ☺️

[Yostie]

How a bone disease grew to fit the prescription. - another angle on osteopenia - this link was provided on HU a while ago.

npr.org/2009/12/21/12160981...

[ChronicTonic in reply to Yostie]

Ha! Same old story, different drug. Fascinating history. Thank you!

[Yostie]

2 links previously published on HU

thyroidpatients.ca/2019/07/...

healthunlocked.com/thyroidu...