Bone health follow-up they want to start urgent... - Thyroid UK

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Bone health follow-up they want to start urgently Zoledronate (zoledronic acid)

Chouchou1234 profile image
12 Replies

my DEXA is -3.7 severe osteoporosis and I’m 48 - started low dose Oestrogel .

Saw rheumatologist yesterday who was very rude actually and told me to stop googling

He said I will do this yearly infusion. Reading horrific side effect. I’m very weak and fragile and will start some training .

I am in thyroid medication. T3 and t4 but my

Liver enzymes are high x

Please I’m petrified as can just about function now .

Please please can you let me know what experiences or what bloods I should ask for.

thank you 🙏

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Chouchou1234 profile image
Chouchou1234
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12 Replies
humanbean profile image
humanbean

Ask for a prescription for tablets. At least then you can stop them if and when you want. Having injections means that once you've been injected you just have to wait it out, sometimes for months, if there are side effects you can't tolerate.

These two links from the BNF - British National Formulary - are worth reading, and tell you what the NHS will prescribe (in terms of bisphosphonates) and in what form, and what the side effects are :

bnf.nice.org.uk/treatment-s...

bnf.nice.org.uk/drugs/alend...

My mother was put on a bisphosphonate and ended up losing all her teeth because of osteonecrosis of the jaw.

These websites are worth browsing :

saveourbones.com/

betterbones.com/

Both the above websites are commercial ones - but they are still worth reading, and you don't have to buy anything.

.

In connection with thyroid you might find these links useful :

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

healthunlocked.com/pmrgcauk...

thyroidpatients.ca/2018/07/...

TiggerMe profile image
TiggerMe in reply to humanbean

Fascinating! Thanks HB... my latest research as I have acidic pee 😕

saveourbones.com/recent-stu...

Chouchou1234 profile image
Chouchou1234 in reply to humanbean

Thank you

I can’t take tablets dies to gastro issues x

I read about the teeth thing. I’m so nervous now.

I checked parathyroid and not that . It’s not having a period for ten years . Low weight.

Thank you for the Information before starting g t3 my bones were very bad but not one bothered to look at the results my t3 was 2.1 for years.

I’ll research tha k you

Hedgeree profile image
Hedgeree in reply to Chouchou1234

Hi Chouchou,

I've also recently been diagnosed with osteoporosis (of the spine) No idea how long I've had it but I think it must be some time.

Currently avoiding taking the tablets too and I'm undecided what to do other than vitamin D and exercises.

I'll follow your post with interest.

Hedgeree profile image
Hedgeree in reply to humanbean

I think I'll be working my way through those links too humanbean as I've also been recently diagnosed with osteoporosis 😐

Joant24 profile image
Joant24

I think you might be mixing this infusion with Aledronic acid which does have horrible side effects but the infusion you’ve been offered is very different. I’ve had 3 infusions over the years and no side effects at all. After my second one (3years after the first) I was taking Vit D and exercising and improved my bone density significantly.

Take care 🥰

Chouchou1234 profile image
Chouchou1234 in reply to Joant24

There’s hope! I’m in such a catch 22 . this message he s thank you

Please any other advice xx

Joant24 profile image
Joant24 in reply to Chouchou1234

You could always ask for a second opinion as your dr sounds dreadful. I can only speak for myself and I’ve had no adverse effects but having had aledronic acid tablets that burned my throat and mouth I was sent to a really lovely consultant who sold it too me so I didn’t look up anything on the internet! It’s always a worry and when we aren’t feeling 100% then even harder to cope with. If you aren’t convinced try to see someone else. Good luck and take care.

Rapunzel profile image
Rapunzel

Saw rheumatologist yesterday who was very rude actually and told me to stop googling

Effectively, you are employing this putz., who to my mind is grandstanding his misogyny. What does he do when he needs some information about anything non medical? (Obvs, he is a master of the universe so far as anything, anything at all medical is concerned) Damn right.: he freaking googles it.

Tell him he's being rude. Standing up to vile bullies is the only way to counter them. I don't know where you are in the country but I would love to accompany you, next time you see this tool. He is nothing more or less than your employee.

Big hugs and very best wishes.

Chouchou1234 profile image
Chouchou1234 in reply to Rapunzel

thank you . What an incredible community. Xx hugs back

Batty1 profile image
Batty1

Did you have vitamin D levels tested?

Chouchou1234 profile image
Chouchou1234 in reply to Batty1

yes 132 that was 1 month ago x

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