Osteoporosis : I have an under active thyroid... - Thyroid UK

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Osteoporosis

Thyroid17 profile image
27 Replies

I have an under active thyroid (Hashimotos) treated with T3 and T4 due to D102. My question is actually that I’m seeking advice on what questions I should be asking GP or action I should be taking. Diagnosis was only one week ago, following hip x-ray. GP reports changes to both hips and more significant changes base of spine (I went to GP re: pain in hips mainly).

I believe I should now be asking about ‘stage’ and looking to do weight bearing exercise (my own research). GP offered future analgesia if required, I tend to not take if can help it.

Sorry I’m a little vague, just trying to point myself in right direction. Thanks

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Thyroid17 profile image
Thyroid17
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27 Replies
Thyroid17 profile image
Thyroid17

Sorry I wasn’t clear: question is re: the osteoporosis not directly about thyroid

An X-ray won’t diagnose Osteoporosis. I think you mean a DEXA scan.

You do need to know your T score. That indicates the stage you’re at. Osteoporosis doesn’t cause pain unless it results in a fracture. Perhaps you should look into other causes of your hip pain.

Weight bearing exercise is a huge help.

You should have been given all this information when you got results of your scan.

Are you sure that you don’t have osteoarthritis? That causes pain and is is diagnosed by X-ray ?

Thyroid17 profile image
Thyroid17 in reply to

Thanks. It was definitely only an x-ray carried out at minor injury unit. I will speak to GP during week. Thanks very much!

in reply toThyroid17

That wouldn’t dx Osteoporosis. More likely Osteoarthritis. The two are frequently confused - and there is a significant level of pain with Osteoarthritis.

Hope you get things sorted. 😉

Thyroid17 profile image
Thyroid17 in reply to

I do get the pain! And stiffness if immobile for a little while. Thanks

in reply toThyroid17

That sounds very arthritic. Luckily there are several options for analgesia

I have severe osteoporosis but no pain. Just high risk for fracture.

Fruitandnutcase profile image
Fruitandnutcase

If you haven’t had a DEXA and seen your T scores etc then I’m really not sure what your GP has seen as if it were that easy to know what is happening inside your bones there would be no need for DEXA scans.

You definitely need a DEXA scan. Or if you want to pay privately a REMS scan with this guy is really excellent osteoscanuk.com/about-us he does the scan then explains his findings on the same day. He is very reassuring.

There is a very good osteoporosis site on HU called Bone Health. Have a look on there. Also worth looking at the Royal Osteoporosis Website too theros.org.uk I like Margaret Martin and her MelioGuide website - she is a Canadian physiotherapist and her site and YouTube’s cover all sorts of interesting things on there too melioguide.com

I think one thing to bear in mind is that if anyone offers you a Prolia as first choice drug - assuming you even need osteoporosis drugs - be very careful as after two injections if you decide you want to stop you absolutely MUST take a relay drug (usually a bisphosphonate) to prevent rebound fractures and some patients are unaware of this.

Thyroid17 profile image
Thyroid17 in reply toFruitandnutcase

Thanks very much, I found her site while scrolling it is very good

Thyroid17 profile image
Thyroid17 in reply toFruitandnutcase

Thankyou so much

Hedgeree profile image
Hedgeree

Hi Thyroid17,

I'll be following your post with interest as I've just been told I have osteoporosis of my lower spine.

As others have said you need a DEXA scan so confirm with your GP what it was that you had done.

I'm still a bit stunned as my scan was in March 2023 and I was originally told by my endo surgeon and GP that my scan was clear and there were no issues. It was only after an appointment at a different clinic in July 2023 that I was asked what treatment I was under for my osteoporosis? What osteoporosis?!

So once you get a DEXA scan I would make sure you get a copy of your results and get them to discuss the results properly with you and what the treatment options are.

Thyroid17 profile image
Thyroid17 in reply toHedgeree

Thanks. I am going to seek clarification next week

mrskiki profile image
mrskiki in reply toHedgeree

Makes you wonder if they know how to interpret results, we know they can be clueless with thyroid and vitamins, but what else.

Hedgeree profile image
Hedgeree in reply tomrskiki

Yes I'm still trying to get my head around it. Not sure how such a mistake can be made by two medical professionals 🤷🏼‍♂️

TiggerMe profile image
TiggerMeAmbassador in reply toHedgeree

I've just found I'm on the osteopenia scale but they stick "age appropriate" in the results and give very little advice... if that's the case being a little more pro-active and giving us age appropriate advice so that this isn't the outcome would be a great idea wouldn't it!! 😡 Also I assume this is "aa" for someone my age who drinks/ smokes heavily and is obese as the NHS wouldn't test a 55 year old otherwise!

I've just started on bonebalance along side all the usual Vit D, K2, Magnesium and fortifying my dairy free milk substitute with calcium

bonebalance.co.uk/

in reply toTiggerMe

I’m severely osteoporotic but have refused any of the prescribed osteoporosis treatments. I do take Vitamin D and Magnesium.

I’m interested to read that you take bonebalance. I’ve never heard of this. Does it have any side effects? My stomach objects to everything except chocolate 😉

TiggerMe profile image
TiggerMeAmbassador in reply to

I've been taking it for a week, it is tasteless in a cuppa and doesn't seem to have any side effects... I was thinking I'll take it for a year and get another scan.

It was radd that gave me the heads up

in reply toTiggerMe

Thank you 😉

Hedgeree profile image
Hedgeree in reply toTiggerMe

I only found out the other day after I'd requested clarification whether I did or didn't have osteoporosis. I have a family history of osteoporosis and broke a limb fairly easily during lockdown so really wanted to know if I had a problem or not.

The GP said there are treatments available but with side effects so need to have a think but like you say not much advice given at all. Age appropriate advice does seem like an obvious idea.

I'm working on my vitamin D levels, K2 and magnesium too. Will have a look at bone balance 😊

TiggerMe profile image
TiggerMeAmbassador in reply toHedgeree

Think I'd be willing to try most things to avoid their "after the horse has bolted" kind of treatment

Hedgeree profile image
Hedgeree in reply toTiggerMe

Yes I agree. Not sure how long I may have had osteoporosis but worried it could have been many years 😐

TiggerMe profile image
TiggerMeAmbassador in reply toHedgeree

Sad they don't see it as preventable 😕

Thyroid17 profile image
Thyroid17 in reply toTiggerMe

Agreed!

in reply toHedgeree

Really easily 🙈

Thyroid17 profile image
Thyroid17 in reply tomrskiki

Now I’m starting to second guess myself, could I have misheard? I’ve no idea. Next week will clarify.

SlowDragon profile image
SlowDragonAdministrator

What are your most recent thyroid and vitamin results and ranges

all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

On T3 - day before test split T3 as 2 or 3 smaller doses spread through the day with last dose 8-12 hours before test

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/wp-content/up...

Tips on how to do DIY finger prick test

healthunlocked.com/thyroidu...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

Monitor My Health also now offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65

(Doesn’t include thyroid antibodies)

monitormyhealth.org.uk/full...

10% off code here

thyroiduk.org/getting-a-dia...

What vitamin supplements are you currently taking

When were vitamin D, folate, B12 and ferritin levels tested

Are you on gluten free and/or dairy free diet

Thyroid17 profile image
Thyroid17

Thanks I plan a private test soon. Initially went to GP as annual test seven months overdue and felt a bit off: tired, especially trying to get up and lacking energy. Bloods in 2022 were better (just on T3 when TSH went from 44.23 to 0.10, Free T4 10.2 to 5.4 with a Free T3 of 5.6). Current bloods not as good TSH 6.87, T4 5.4 and of course they didn’t check T3 despite my having D102 gene and on 25mcg T.3 and 50mcg of T4. HDL in bold at 0.9 and CRP at 7mg/L. I did trial reducing T4 a little briefly and felt much better but GP wants to increase this to 75mcg whilst leaving T3 at 25mcg despite my commenting 10mcg tablets cheaper than 5mcg.

Thyroid17 profile image
Thyroid17 in reply toThyroid17

CA 125 14 kU/L (0-35), Faec Calprotectin <50 if/g (0-50), Folate 5.3 if/L (3.0-20.00), Vitamin B12 397 BG/L (187-883). I take Vitamin D but this has not been tested that I can see. Leukocytes in bold at 3.40 (1-3).

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