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