Recently diagnosed and have questions

[BoneJangles]

I'm 41 and went for a DEXA scan in January due to a family history of osteoporosis. I have mild scoliosis in my thoracic spine. The results came back as having osteoporosis.AP Spine BMD 0.713 t score -3.0 z score -2.8

Femoral neck BMD 0.564 t score -2.6 z score -2.3

Hip BMD 0.640 t score -2.5 z score -2.3

Major osteoporosis fracture risk 4.9%

Hip fracture 2.0%

I've always been fit and active - exercised all my life and am now a pole and aerial instructor, and training to become a PT. So I'm already doing all the recommended weight bearing exercises. I'm vegan but my vitamin D and calcium levels are normal. They did tests for secondary causes but everything has come back normal.

So I've been having a hard time coming to terms with it, seeing as I'm already doing what you're supposed to do to help. I've bought a weight vest.

I've been prescribed alendronic acid, which I put off taking because I have acid reflux and the side effects sounded horrible. Also, I had to have a tooth extraction.

I've now reluctantly started the alendronic acid but I have one major problem: I hate water. It makes me gag. It's recommended to drink a full glass of water, but I can only manage a few swallows before retching which isn't good for my reflux!

Question: why does it have to be plain water? I guess it's to do with the absorption but seeing as I can't manage more than a few swallows, that will probably affect it anyway.

Would flavoured water be ok? I can't find anything online about why it has to be plain water, just that's what it's supposed to be. Surely a full glass of flavoured water would be better than a quarter of a glass of tap water?

[Fruitandnutcase]

I think it is supposed to be plain old tap water. If you already have reflux and aren’t coping with the tablet etc surely you would be much better with an annual infusion? Phone the ROS helpline for advice.

[BoneJangles in reply to Fruitandnutcase]

So far I haven't had any side effects with the tablets - I just despise the taste of water. My GP insisted I try the tablets first to see if I get any side effects before trying anything else.

[MayGodBlessYou]

not liking the taste of water is an unusual thing..! you sound fit so must be so disappointing to get those numbers.

i notice mention of tooth extraction;

you really need to get advice on the timing of it, with relation to the tablets

[BoneJangles in reply to MayGodBlessYou]

I have Autism so I think not liking water is due to my heightened senses.It's definitely been hard to deal with! I've bought a weight vest and have increased my visits to the gym.

I had my tooth removed two weeks before starting the tablets as I'd read up on osteonecrosis, and the dentist agreed it was better to extract the tooth before, rather than wait to see it it needed extraction after I'd started.

[CallMeSunny]

Soluble Alendronic Acid tablets are available. They cause a glass of water to fizz ….like carbonated water…. I tend to think it’s better to have a full glass of lightly flavoured water (very weak non-acidic) rather than a few sips ….ensures the whole thing gets as far along the system as quickly as possible 🤣

[BoneJangles in reply to CallMeSunny]

Yeah that's what I was thinking, especially as I have to fight not to retch with the water, which is definitely not a good thing.

[walk21]

I cannot drink cold water, but manage ok with hot. You might like to try. It's not nice, but my throat doesn't react to it

[BoneJangles in reply to walk21]

I'll give that a try, thanks 🙂

[Fruitandnutcase in reply to BoneJangles]

I hope you can find some way of drinking the water because it is really important to wash the tablet down with a decent amount of water otherwise it could damage your gullet.

Your doctor or more likely the consultant who had prescribed it for you really needs to give you something you feel able and happy to take. I’m sure if you tell him you are going to stop the alendronic because you can’t take enough water then he will blooming quickly find another way for you to take it. Good luck with it.

[Bertiepuss]

Hi  BoneJangles just wanted to say hello, I'm in a similar position, I agree it's hard come to terms with already having bone as a young age. I'm 45. My t and z scores are a little better than yours so I'm not yet at the point of needing AA. I'm vegan too and keep my Vit D up. I do wonder about the calcium though as the test they do for it only tells you that it's balanced in the blood and not whether you have enough for your bones. I have a history of osteoporosis in my family as well.

I have tried to do as much research as possible about how to help my situation and slow down the progression. I found the following resources very informative - listed below. I have started HRT. I was getting perimenopause symptoms so it was firstly to control them but the Royal Osteoporosis Society also advise HRT can be a good option to slow down the bone loss from the loss of oestrogen around menopause - link below to the video where they talk about this. Obviously HRT is not suitable for everyone but I thought I'd mention it to you as menopause is not that far away for you and bone loss begins in perimenopause.

Youtube - look up Dr. Doug Lucas - very informative videos - recommends natural approaches first but does not exclude medications where necessary. To warn you, he's very pro meat (or high protein), I just ignore that bit and get as much protein as I can from beans. legumes, tofu, tempeh and also pea protein in a smoothie everyday gives a good boost. I feel the rest of the information he gives is highly useful. If you like his approach you can do the free 1hr MasterClass, this then leads you to an option the sign up to the free Bone Foundations Course. I highly recoomend it. It is laid out so well, in modules that follow on from each other in an organised fashion and covers everything. Of course he would like to sell you the paid program but there was never any pressure to buy this. i really feel he gives out an awful lot for free which is pretty generous.

Also Dr. Susan Brown - youtube videos and her website gives out a lot of free information.

Also Bone Coach on youtube.

ROS - Oestrogen and HRT - youtube.com/watch?v=HfvIilU...(Not working as expected?)

Sorry if you already know all this. I wish someone had given me all this when I had my first DEXA a year ago rather than spending 6 months looking for it myself. Then when I joined this forum in November I got lots of useful info from the lovely people on here.

Can't help with the water thing, I love plain water!Wishing you all the best 🤗

[BoneJangles in reply to Bertiepuss]

Thank you! This is very helpful, and saves me going down a rabbit hole trying to research it. I asked my GP about HRT as my family have a history of early menopause but she just kept telling me to take the AA first to see how I got on with them.

[Bertiepuss in reply to BoneJangles]

Sadly GP's are not experts on this and AA is the first choice for post meno women who are already 65 when they are diagnosed on their first scan and already 10 plus years out from menopause. That makes HRT look less desirable. Remember, most women don't find out until age 65 - we have an advantage that we already know our bones are not in the best of shape and can take measures early. I have found that you have to be your own health detective and then tell the doctor what you would like them to do for you. Of course, you need to approach this in a respectful way to not undermine them.

Are you having any symptoms of perimenopause yet? HRT (body identical) may not be right for you now, I just wanted to make you aware that it is considered an actual treatment for osteoporosis especially in women who are around menopause age. It may be something to think about for the future.

I read your reply about having hyperthyroidism - hopefully once that is under control the rate of bone loss should drop.

I'm not saying AA is not the right course for you. What I learnt is that bones change gradually so once you find out you have low bone density, unless you are already fracturing or have very low scores, you have some time to work out what to do. A few weeks doing research is not suddenly going to mean you will decline hugely. Your FRAX score is not bad so that indicates a risk of fracture is not high. That's not say it can't happen, and people fracture with perfectly normal t-scores too.

When I first found out, I phoned the nurses at ROS and they went through my FRAX score with me. I found it very reassuring. My GP could not offer any advice past calcium, vitamin d, weight bearing exercise and AA once my bones get a bit worse! That's when I decided I needed to learn about how bones work, what effects them and about all the resources available both natural and pharmaceutical.

I see others have mentioned REMS - I'm having this in July. It looks at bone quality as well as density, and that is important too. You do have to pay for this scan yourself. I will then get a repeat DEXA on the NHS either next year or the year after to be able to compare like with like to my first one also.

Happy for you to PM me if you want to talk further 😊

[BoneJangles in reply to Bertiepuss]

Yeah I've been having menopausal symptoms for about 18 months - night sweats, constantly tired, brain fog - so I had to practically beg for a blood test (the 'you're too young' bs excuse) which is when they found the hyperthyroidism. So far, the meds I'm on for that have done sod all for my symptoms. I hadn't heard of REMS until joining so I'll definitely look into it. Not sure there's any places in Wales that offer it. I've only ever broken two bones so I'm sure they're pretty strong, and it would be nice to get an idea of their actual strength.

[Bertiepuss in reply to BoneJangles]

Do you mind sharing what hormone tests you actually had please? Did they do all the female hormones and at what stage of your cycle were you at?

[BoneJangles in reply to Bertiepuss]

I'm not sure which ones they tested, but I'll ask. I know they did the T3, T4 and TSH. No idea where I was in my cycle, as I've been on Cerelle mini pill since 2016 and haven't had a period since. Part of me thinks that they're wrong I'm not in perimenopause, especially as the Carbimazole thyroid meds have done nothing about the night sweats

[Bertiepuss in reply to BoneJangles]

Ok, if you're on the pill then hormone tests like oestrogen etc won't tell you anything, nor do you know if your monthly cycle has started to go whacky either. It could be that the night sweats are part of peri and not the thyroid. You need to know if your thyroid is properly under control first. I hope they are monitoring you with further tests? You could consider asking on the Thyroid UK forum, they are super helpful there too.

If you haven't already seen it, the balance website is very informative regarding perimenopause, menopause, HRT and alternatives. They also talk about bone health. balance-menopause.com/

Look at all of this one thing at a time. It can be overwhelming trying to do too much at once. You could set yourself a task of researching one topic every week or two.

[BoneJangles in reply to Bertiepuss]

Thanks, you've been so helpful. I'm having a scan on Friday to see if I have Graves disease.

[Bertiepuss in reply to BoneJangles]

You're welcome 😊 That's good, hope the scan reveals what is or isn't going on with your thyroid. Please do make a post with your thyroid hormone blood levels, treatment so far and symptoms in the Thyroid UK forum mentioning your osteoporosis diagnosis, you will get good advice on how to navigate the thyroid aspect.

[BoneJangles in reply to Bertiepuss]

Thanks, I'll do that 🙂

[HealthELiving]

Hi - my t-scores are similar to yours. If you have access to a REMS facility, I highly recommend getting that to determine your bone strength vs. the DXA which has inherent flaws if not done accurately - plus, it does not tell you what your bone strength is which is actually more important. I am making significant changes to my exercise and nutrition for a year to determine if I can avoid taking the biophosphates.

I recommend caution in listening to those 'bone specialists' online that have made a business out of their degree and marketing. Research studies and hopefully find a reliable local physician who can work with you.

A study found that consuming milk, coffee, OJ and food may decrease the absorption of oral biophosphates. Therefore, Mayo Clinic recommends dissolving an effervescent tablet in 4oz of room temperature plain water only (not mineral or flavored). If taking the tablets, they recommend swallowing the tablet with 6-8oz plain water. Maybe the effervescent tablet would be easier if you are choosing that direction. Biophosphates are likely something your dr. will have you on for 3 years.

[BoneJangles in reply to HealthELiving]

I've done a quick search and I don't think Wales has any REMS facilities. Definitely won't be on the NHS! Everything I've read says to take the tablets with plain water but nobody explains why, which is the frustrating part.

[Hidden in reply to BoneJangles]

It needs to be plain water (and not hard water) because various substances in other drinks (including hard water) can reduce the absorption by the body. And plenty of water is necessary to wash the medication along the gut, to avoid potential damage to the oesophagus.

[ROSModerator Partner in reply to HealthELiving]

Thanks for sharing. We are posting again about REMs to make sure people aren't reading misleading information.

We’ve noticed that some people have been saying that REMs is more reliable than DXA scanning and is the best test to understand your bone strength. Our specialist nurses stress that the current up to date expert-view, based on the research evidence is that REMs is an interesting scanning method which is currently being researched. But it is not yet accepted by experts in the field of bone measurement as a reliable and fully tested approach to understand how strong your bones are.

We have a video and web page here which gives more detailed information about this topic. Please see the ultrasound information on the ROS website. theros.org.uk/information-a.... You can hear more from an expert (start watching the video at 30.15). The scans and tests section of our website tells you the best ways to investigate and understand bone strength.

This can be a tricky area to understand because no scan or test can perfectly explain bone strength and we all want a definite answer especially if we are making decisions about medications. But just a reminder, please don’t post anything as ‘fact’ when it’s a personal view and not yet proven as it can be confusing.

[HealthELiving in reply to ROSModerator]

Moderator, I do not believe I stated anything inappropriately, but thank you for the reminder. we all describe our personal experiences. Unknown to me, my DXA was incorrectly performed and read for years which resulted in not addressing my current osteoporosis. While DXA is considered 'gold standard' , it is acknowledged to be prone to errors and does not inform on bone strength as well as imparting radiation. In my opinion however, if performed correctly, can be a limited informative guide. It is so very important that those of us with osteoporosis have accurate information to base our medical decisions upon since medicines do have side-effects. I prefer not to live in fear of a diagnosis and collect as much information and data as possible to help me make the best decision for me. REMS (Radiofrequency Echographic Multi Spectrometry) is prevalent in Europe and in parts of the U.S. I have no affiliation with any company or physician for this product.

I am adding a link from the National Library of Medicine that is entitled 'New perspectives in echographic diagnosis of osteoporosis on hip and spine'. One of many credible source articles and well worth the read. ncbi.nlm.nih.gov/pmc/articl...

[Reese4]

What jumped out at me while reading your post is the mild scoliosis and the weight vest. I too have mild scoliosis and bought a really nice weight vest thinking I'd be doing a good thing for the osteopenia. No! The weight vest can worsen the scoliosis. Think of how the weight pulls down on the spine making the curve more pronounced.

This disappointed me greatly because my vest is comfortable and I was so hopeful but decided not to risk ending up worse than when I started. If you learn something different I'd be happy to hear it but everything I was able to find advises against wearing a weight vest with scoliosis.

Wishing you well.

[Kaarina in reply to Reese4]

I have scoliosis and use a rucksack when out and also to carry shopping home. This is a recent thing for me and I wish i had started this years ago. I find it so much easier to walk with arms/hands free. I have bad shoulders now and carrying bags on one shoulder or both is no longer comfortable for me to do. So I have no idea whether I am doing myself more harm than good but as it is so much more comfortable I shall be continuing regardless.

[BoneJangles in reply to Reese4]

I'll keep that in mind. I see a chiropractor regularly for a different issue so I'll ask him if he notices the curve worsening over time. Be interesting to find out!

[Met00]

The reason it needs swallowing with a full glass of water is to ensure that the pill is carried all the way down the oesophagus, otherwise it might cause damage. It has to be plain water, as you said, because anything else could inhibit absorption.

I'm really surprised you've been prescribed AA with those results, as your fracture risk is really low, and medication is only meant to be prescribed when fracture risk is high. I would question that with your GP.

You say you've had tests for secondary causes, but it would be worth checking that this included a parathyroid test (done from the same blood draw as Vitamin D and calcium), as not all GPs realise the importance of this test. You should also have had blood tests for thyroid, coeliac and a full blood count. There has to be a reason why your bone density is low for age!

Just one other point. Unfortunately a blood test won't tell whether your calcium intake is adequate, as the body prioritises keeping blood calcium level within a limited range, meaning that if your intake (and/or absorption) is inadequate, your bones will lose out. You need to check how much calcium you're having in your diet. There are various calcium calculators online, plus I think the ROS has one.

[BoneJangles in reply to Met00]

I was diagnosed with hyperthyroidism in September - I asked to be tested for early menopause - so they've done the parathyroid test, coeliac, vit D and myeloma. I'm under the endocrinology clinic but they want me to have radioactive iodine. So far, I've refused, as it seems a tad extreme seeing as I've just been diagnosed. When I went to the GP, she was more interested in finding out what I knew about osteoporosis, rather than answering any of my questions.

[Met00 in reply to BoneJangles]

Unfortunately many GPs know very little about osteoporosis, so it's possible she didn't know the answers! Very frustrating for you though! It's likely that your bone loss has been caused by hyperthyroidism, so hopefully now that's being treated, your bone loss will stabilise.