No thyroid /Alendronic acid problems

[Etch43]

Hi I am a new member. I had thyroid cancer & now have no thyroid or parathyroid & therefore need to take daily calcium, which is monitored every 6 months. I recently have been prescribed alendronic acid for pre osteoporosis.( one per week) However the day after taking this I feel really ill - dizzy , fatigued & achy which takes as least two days to wear off a bit. I am concerned about what is happening to the calcium in my body & why I feel so wretched. Is there anyone else in this situation? Or any advice ?

[Caroline888]

Hi Etch43

I don't know if this will be helpful but my mother took Bonviva ibandronic acid for osteoporosis. It is the equivalent of what you are taking but is only taken once a month with a large glass of water on rising, with breakfast and other drinks having to be delayed for one hour.

This was prescribed instead of the weekly pill because she had dementia and I had to be at her house early before she was out of bed so as to make sure she took it according to the instructions. Once a month in those circumstances was obviously preferable to once a week!

Since the pill you are taking is causing you problems, perhaps you could ask your GP to prescribe Bonviva for monthly dosing. This would at least reduce the number of days when you feel out of sorts and indeed may not cause you any problems at all. My mum was perfectly fine with it.

Fingers crossed you get this sorted soon.

Best wishes

Caroline

[Ilda70 in reply to Caroline888]

Hi carolina ? Did your mother experienced any side effect with bonviva ? Do you need a prescription to by this medication? Thank you !

[Caroline888 in reply to Ilda70]

My mum had no problem at all with Bonviva. She was prescribed it by her GP after she suffered from a spontaneous fracture of a vertebra in her lower back due to osteoporosis. It took about a year to heal but she had no further fractures in the last 8 years of her life.

It does have to be prescribed I believe and it is very important to take it with a full glass of water to protect the oesophagus.

All the best

Caroline

[MaisieGray]

Have you read the PIL that came with your tablets, to check out side -effects? A quick search says that "The most common side effects that you may experience whilst taking alendronic acid are; stomach pain, indigestion or acid reflux, flatulence or bloating, constipation or diarrhoea; and muscle, joint or bone pain." So the latter seems to fit with you feeling fatigued and achy. They may perhaps wear off over time, as your body acclimatises, or you may need to check with your GP if there is an alternative make that could suit you better.

[greygoose]

I'm not an expert - not even a doctor - but I'm just putting this out there to give you something to think about...

My brother had osteoporosis. He phoned me last night and told me that his osteoporosis had gone, and he now only had osteopenia - now, whether osteopenia actually exists, or if it's just another attempt to medicalise aging (he's 70), is a discussion for another day. The point is, he no-longer has osteoporosis.

So, I asked him what he'd been taking. Did he take alendronic acid? He said that, in the beginning he did, after he was first diagnosed. But he didn't like the side-effects so told his doctor he wasn't going to take it anymore. His doctor prescribed vit D and calcium. Now, I was very against that. He still has his parathyroids, and from what I've read, excess calcium is a very bad thing - he wasn't even being monitored properly. Taking vit D, yes - it's good for bones. Taking vit D increases the absorption of calcium from food. But, you should always take vit K2-MK7 to make sure that calcium gets into the teeth and bones and doesn't build up in the soft tissues (he actually has very good teeth). And, he wasn't even taking magnesium, which is essential when taking vit D, and more important for bones than calcium. So, I expected him to drop dead of a heart attack, in a pile of crumbling bones, at any minute.

But, he didn't. And, now, his osteoporosis has gone. So, this is a bit of puzzle to me. What happened? How did it happen? What were the key players? And do these nasty BP osteoporosis drugs even have a place in the equation? I don't have any answers, but I would like to know. And, one thing is clear, if I were ever diagnosed with osteoporosis, I would not be taking alendronic acid, or any of the other things that are supposed to help. I would stick to vit D, vit K2-MK7, magnesium, and make sure all my other nutrients were optimal.

[Nanaedake in reply to greygoose]

Very interesting about your brother. I improved a lot after taking calcium alongside vitamin D despite advice on this forum by a few people against it.

But I think when we've had even a partial thyroidectomy we might run low on calcium when heading into menopause. In any case, I got osteoporosis somewhere along the line and wish I'd taken calcium from the outset as well as all the other vitamins.

I would definitely advise Etch 43 to optimise all vitamin levels, look into eating 6 prunes a day for the boron and take magnesium. Also take vitamin c which helps to form collagen.

Bisphosphonates are a choice and some people like me choose to try them. If you get side effects then you might have to rethink. I wonder if people with thyroid conditions or who are taking levothyroxine get more side effects than other people?

Bisphosphonates might effect the way we absorb thyroid hormone even though they're not supposed to... But if they affect your stomach and intestines then it's possible.

[greygoose in reply to Nanaedake]

Well, I was flabbergasted. Makes me think I don't know anything any more. But, of course, I'm happy for him that it did work. However, I keep waiting for the catch…

[Nanaedake]

If you haven't actually got osteoporosis then why have you been prescribed AA?

Are you very young?

Have you been prescribed vitamin D alongside your calcium? The Alendronic acid works alongside calcium to help bones utilise the calcium.

A lot of people get used to the drugs eventually and stop getting the side effects but other people start off with no trouble and get side effects somewhere down the line. I would go back to your doctor and tell them you're getting side effects as they could change the medicine to something different to see if it's any better. Risedronate could be an option.

[Angel_of_the_North]

The trouble with alendronic acid is that it interferes with bone turnover so you get lots of old bone but no new bone. That gives great bone density on tests but means that if you do fall hard you are more likely to have a really serious fracture (think hitting a pane of glass rather than a block of wood). It can also cause jaw necrosis in some people. But I haven't heard of dizziness and nausea as side effects (joint pain, yes). Do you take vit D, K2 and magnesium along with your calcium?

[Nanaedake in reply to Angel_of_the_North]

Well, I don't think it completely blocks the bone building process but it does slow down bone removal so the idea is that it rebalances the process and allows the body to build bone while reducing loss. Perhaps exercise triggers more bone growth and stronger quality?

[Angel_of_the_North in reply to Nanaedake]

Still don't fancy it: gov.uk/government/publicati... increased incidence of oesophageal cancer, for example, and apparently nausea (and regurgitation) is a side effect.

[Nanaedake in reply to Angel_of_the_North]

All medicines have potential side effects. It's a case of considering risks versus benefits. Spinal fractures can be extremely painful, hip fracture is lethal and the options are currently limited. It's difficult enough for people to have to take medicines for such a distressing disease as osteoporosis. There are many, many people who take this medicine for up to 5 years because the alternative without it might be severe disability. It would be better of course to prevent it in the first place or have more alternative treatments.

[Angel_of_the_North in reply to Nanaedake]

True, but apparently it's also slightly associated with serious hip/femur fractures as a side effect (a bit like statins being associated with heart disease).

[Nanaedake in reply to Angel_of_the_North]

A possible very rare side effect and any hip pain should be immediately reported to doctor as pain can begin well before any fracture occurs.

I'm not advocating it but it's hard enough to decide what to do and there is good evidence for its efficacy.