Thyroxine/PMR/Steroids/AA: I haven't been on here... - PMRGCAuk

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Thyroxine/PMR/Steroids/AA

Ricketts40 profile image
10 Replies

I haven't been on here for a while but hopefully I will be offered some good advice from similar sufferers on here. I have been taking thyroxine since 1982 100/125gm alternate days. In early 2019 I was diagnosed with PMR, which was quite mild, but was treated with steroids. February 2021 I finished my steroid course in 2021. I decided recently to have a DEXA scan which informed me that I have osteoporosis in my right forearm and osteopenia in my lumber regions. On seeing my Dr he has advised me that I should take AAcid which I refused because of the reports other sufferers complain about. At the same time as my diagnosis of PMR I was also diagnosed with something called Barretts Oesaphagus which, when informed of my having this stomach condition, I informed the Dr that I have never had reflux or heartburn or stomach problems to which he replied 'oh well than you have Silent BO . I then spoke to a Dr/Nurse at an Osteoporosis Centres who said on no account should I take AAcid when you have BO (not the smelly kind). I returned to speak to my Dr who has again given me AAcid to try?? Also telling me that Thyroxine also thins the bones and that I will be on that life.

inished the course and have been have fine until I decided to have a Dexa scan. My results are I have osteoporosis in my right forearm but osteopenia in my hips and lumber regions. I also have something called Barretts Oesophagus which was also discovered after an endoscopy in early 2019. When I was told about my having BO (not the smelly kind) my reaction was 'well what is it' the Dr explained that I suffer from reflux and heartburn problems, to which i replied, 'I have never had any problems with my stomach and have never had reflux'. His reply was ' well then you have Silent BO'. I have had a recent talk with my Dr about my Osteoporosis and he wants me to go on A/Acid which I turned down. I also recently spoke to a Dr/Nurse at a Osterporosis Centre who told me on no account should I take AA if I have BO. I have revisited my Dr who has again given me AA also informing me that Thyroxine also thins the bones which I have to be on for life. I am 75 years old have jusI have enrolled in 2 Pilates classes, go on regular walks and am very active. Advice please,

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Ricketts40
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123-go profile image
123-go

Take a look at the following, Ricketts40.

theros.org.uk/information-a...

PMRpro profile image
PMRproAmbassador

"I returned to speak to my Dr who has again given me AAcid to try"

Complaint time - it is directly contraindicated with Barretts and he could make you very ill. There are alternatives - not least zolendronic acid given into a vein once a year - no gastric risks.

Can you see a different, less ignorant, GP?

Exflex profile image
Exflex in reply to PMRpro

There’s another… Prolia … wife has it injected every 6 months. Dentist consider it to be worse than oral Bisphosphonates when it comes to teeth being extracted.

SheffieldJane profile image
SheffieldJane

I would not consider taking AA. I have been on levo-Thyroxine since 1984, no one mentioned the bone thinning or even considers it now. I have oesophageal spasms and diverticulosis that behaves like diverticulitis. Abdominal pain has been the straw that broke the camel’s back for me. Thank you for alerting me to way out when they brandish this drug again when my bone scan results come through. Good DEXA scans so far, not sure now. You are leading a healthy life.

piglette profile image
piglette

As the others say if you have Barrett’s oesophagus you should not take Alendronic Acid. Did you say this to your doctor? Mine sometimes recommends contraindicative medicines. Having worked with the pharmaceutical industry I now know enough to question them, which I do, they usually just say “oh yes”! The Osteoporosis Society reckons that 50% of women over 75 have osteopenia/ osteoporosis.

Pippah45 profile image
Pippah45

I moderate on a Thyroid forum and I have never heard of Levo causing osteoporosis - time to change your doctor who is pushing AA. with your BO - disgraceful. We can help ourselves with diets and less nasty things than AA. I supplement with Boron and Magnesium amongst other things to lessen the threat of Osteoporosis.

Exflex profile image
Exflex in reply to Pippah45

That’s comforting to know. I’ve been on 25ug of Levo Thyroxine for the past 10 years. Actually 50ug for about 5 years, but blood tests informed my GP to reduce the dose. It’s far better to treat the primary problem, such as an under active thyroid as in my case.

Pippah45 profile image
Pippah45 in reply to Exflex

I think we need to be aware of what affects the body - for example I am on steroids for Polymyalgia and GCA and so I am taking steps to minimise the osteoporosis that is a known side effect of prednisolone. That's a fairly low dose of Levo - how do you feel on it?

Exflex profile image
Exflex in reply to Pippah45

I feel absolutely fine and blood results show thyroid levels and chemical signalling to be working as required.

PMRpro profile image
PMRproAmbassador in reply to Pippah45

It can at higher doses - in the same way hyperthyroidism can lead to reduced bone density. All the more reason to keep it well adjusted.

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