Menopause Matters Forum
Menopause Discussion => Other Health Discussion => Topic started by: HellsBells on February 24, 2023, 05:16:27 PM
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I had a DEXA scan almost by chance in 2019 and then again in 2020. Although I was on the young side it was because I'm coeliac that the clever doc joined the dots and suggested it. Much to my utter dismay I found I had osteopenia in my hip and spine, and osteoporosis (just) in the other hip. I was gutted. Then Covid...etc.
I'm due to have a further check up soon and I'm too scared to go. Although I have walked most days since lockdown, done stair climbing and gone gluten free I am terrified it will be a bad result. I have improved my diet, don't smoke or drink either.
I am very small and light, and probably didn't ever have high baseline density, but doctors treat us all the same (ridiculous) and the drugs are hideous. Terrible side effects and questionable mechanisms.
I really can't get my head around this.
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Go. Worrying about the what ifs won't help. Getting a scan will give you a base-line: you may be absolutely OK. Pity that you didn't get a follow up! You can look at the UK-based osteoporosis society web-site.
Who will go with you?
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I can totally understand you are worried. The thing is, you have tried to hard and cutting out gluten will have helped you so much. Imagine if you get a scan and it is good news? It will really reassure you and you will feel so much better.
It could be you will not need any drugs at all. I can understand it is a lot to get your head around. I feel Dr's tell us such things but then do not give any advice or information and we are just left to deal with things.
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I too had a dexa scan and was told I'd osteopenia,totally gutted as I really didn't think there'd be anything wrong.I've been put on Accrete,which is a vit d and calcium tablet,dreading my next one too tbh
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Hello ladies.
HellsBells, - I completely understand your reluctance. I am small boned and although I have always walked a lot I was diagnosed with IBS when in my late teens and was found to have Ulcerative Colitis when I became post meno. I have been in remission ever since but I realise that my digestive system has likely led to weak bones over my lifetime. I have never asked for a DEXA scan and I would be afraid to have one in case it is bad news. Silly I know. Apparently larger people tend to have thicker bones because of all the extra weight they carry but I like to think that thin boned people can help themselves by weight bearing exercises which include walking. I also assume that the marathon runners we see on television have good bone density and these people are stick thin lol.
Jaypo - It is interesting that you were prescribed a Vitamin D and calcium tablet, have you been on this treatment for a long time? I ask because we are now advised to take K2 with Vitamin D to ensure that calcium gets to our bones. I know you don't use HRT so if you are relying on this regime you want to get the most benefit.
Wishing you well ladies and take care.
K.
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Thank you Kathleen,I've been on it since November but I didn't know or wasn't told I needed K2,tbh I've not even heard of it,I shall ask the Dr,thanks again xx
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My GP is very pro HRT for any woman at risk of developing osteoporosis. Not everyone is able to take it of course.
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Hello again ladies.
Jaypo - You can buy K2 from health food shops, I get mine from H&B. You may want to do some Googling to see what you think.
I know that you have been benefiting from CBD gummies and I wonder if you started taking Vit D at the same time? If so some of your improvement may be due to Vit D as well as the gummies!
Wishing you well and take care.
K.
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Ah yes, whilst googling, I read vit d good for anxiety, well helping with it I should say ;D so yes,maybe that PLUS the CBD,you never know, I maybe singing from the hilltops soon lol thanks again Kathleen x
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Hello everyone
To all of us on this journey. It’s all hideous and so nerve wracking.
I’ve just bought this book from Amazon. It makes for very interesting reading.
It certainly puts a totally different slant on things anyway.
Osteoporosis Reversal Secrets
By Igor Klibanov
I know the medics say the condition can’t be reversed but it’s very interesting to read about other options to consider rather than being pressured into taking the ‘big pharma’ meds. Sending hugs to you all.
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All I would advise anyone who's been diagnosed or is at risk is - please don't just do nothing!
Having watched my mum who experienced spontaneous crush fractures in her spine in her mid 60s and then became increasingly disabled by this horrible condition over the next 20 years, osteoporosis is not something to be trifled with.
Good luck all.
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Hello again ladies.
A friend of mine saw no improvements after five years on the medication and was told that her bones had actually deteriorated further. She wasn't on HRT at the time but now uses a 50mcg patch. Perhaps try to have scans whilst on the treatment to see if it is working, if not then other methods like HRT, vitamin D supplementation etc can be explored.
Take care ladies.
K.
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The main thing is not to do nothing. Weight bearing exercise, calcium and Vit supplements (D and K2) . Also getting short (10 to 15 minute) spells sitting out in the sun when it finally comes back.
I am currently on Denosumab which has improved my bone density to osteopenia BUT the injections make me feel extremely unwell. I wish I'd not started it, initially I was told it would be for 5 years - now I'm told I have to do another 4 years.
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So...I put my big girl pants on and had a follow up DEXA two days ago. For once I tried to be the compliant patient they prefer - quiet, asked no questions and didn't press for an insight as the paperwork said no results would be given on the day.
My last scan was 5 years ago - 7 months after my periods stopped and 5 months after being diagnosed as coeliac and going on a gluten free diet. I had -1.3 in my spine, -2.2 in my right hip and -2.5 in my left hip (JUST into osteoporosis). I was 50.
However, the clinician made a couple of cryptic comments which now have me losing my mind! This may be an irritating post as I don't yet have results - but I need something to distract me!! The clinician said, literally just before I left "so we'll see you again in 5 years" which means my result is abnormal still. But also said "and then hopefully we'll see you in 20years!" She was lovely, competent and efficient but I REALLY wish she hadn't said that. It could be bad news (the interval for drug treatment is 5 year checks) or that I have improved...I'm going nuts here.
After the last scan I upped my exercise, have stuck to a gluten free diet and taken supplements and stopped all ready meals, take aways etc etc. I was too scared to go back as this thread begins, for the longest time!
I think the results can take up to 2 weeks...
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Well done for going Hellsbells! That is so brave of you. I am sorry about the comments the Dr made but as you are anxious you may be analysing them when they may not have meant anything at all. I can understand this as I do this too. It is unfortunate you have to wait two weeks for the results but in the meantime please congratulate yourself on actually going. I think that is a real achievement.
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Thanks Flossieteacake! :thankyou:
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Is it like many scans etc., 3-5 B 4 the next one is required?
U went. Anything on the results when they arrive can be acted upon. U seem to be doing OK anyway! How do you feel today, ? tired ?
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Honestly? I feel a visceral terror - if my results are worse I will be gutted.
My results at age 50/51 were bad but not investigated. I assumed it was because I was coeliac but now I wish I'd had further investigations at the time. I was 7 stone until I was 40 and didn't like dairy but I was very active so it's all a bit odd. I'm concerned any gains I've made while gluten free (since 2019) will have been dragged down by my lack of oestrogen/progesterone. I was never able to follow through with the HRT either.
I am beyond stressed!!!
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My dr old me it's every 5 years,tbh it sounds promising to me,like there's improvement :D
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Ring your Surgery and ask what the time lag might be? For mammograms is so many, bowel test kit arrives here about 3 years apart etc..
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Ring your Surgery and ask what the time lag might be? For mammograms is so many, bowel test kit arrives here about 3 years apart etc..
Every 5 years with osteopenia? I thought they didn't get you to re-test if you were in that category - just osteoporotic?
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According to my Dr I'll be tested again,I mean why wouldn't they,just to make sure it isn't getting worse 🤷♀️
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Ring and ask ?
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I think they tend to test every 5 years to check on the T scores to check on the progress of the disease.
Speaking as one who has just broken her foot (no trauma) I'd quite like to see what my osteoporosis/penia is doing.
One thing to bear in mind is DEXA scans aren't entirely easy to get - well they aren't around here even when post menopause. It took a fracture before I got my first one.
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OK, so I was completely misled by the idiot clinician.
My hips are both well into osteoporosis (-3.0) and my spine is almost there (-2.4) I am completely gutted and scared. I can't see the point of carrying on.
I have had cancer, I've had 5 surgeries for various things, I have hypothyroidism, coeliac disease and hair loss. I have back and neck problems and chronic intermittent dizziness. I'm 55. Really, what is the ****ing point. The only way to navigate happy old age is to be healthy and strong. I can't do that with osteoporosis.
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Oh and I forgot...I have a double prolapse.
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Hellsbells, this has come as a huge shock to you and it is understandable you are upset and depressed. Please do not do anything rash. Are you making any plans because your words struck a cord with me and has made me wonder if you are safe. Are you alone tonight?
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Morning HellsBells - do have a lookC at the UK Osteoporosis support group and ask the questions. U may get more sensible advice that will lift your mood.
U R already dealing with a lot of health issues - hopefully each 1 is seen on a regular basis ? [sorry mind numb this morning]
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Hellsbells just to follow on what Flossie and clkd said,there IS help and things will be ok,you are a relatively young woman and as a woman,you are strong,osteoporosis doesn't mean you are going to fall to bits,I know people who have lived with it for years and are all ok.
Sometimes when anxiety gets a hold,we can all feel like you do now,this week, I have felt down with all my aches and pains,if it's not my back it's my ankles or feet,stomach is always giving me trouble and I sometimes think,god,is THIS it forever but then I say,NO WAY is this getting the better of me and I start fighting again. Do look at the osteoporosis help out there like clkd says. Please try to let us know how you are xx
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I have to admit I am struggling. Decades of illness and surgery, structural issues and pain, dizziness and random unexplainable symptoms. I have to admit this isn't how I saw my life going, it doesn't allow me to be who I am/was and I can't see the point. If my mum and dad weren't alive I wouldn't care if I died. My life is at a standstill. I don't have my own kids (stepkids of 25 yrs) and I am having a temporary break from work. I have the best husband in the world but I just feel like I am ruining his life with my problems. He deserves someone with life and enthusiasm. I am dragging him down.
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I have to admit I am struggling. Decades of illness and surgery, structural issues and pain, dizziness and random unexplainable symptoms. I have to admit this isn't how I saw my life going, it doesn't allow me to be who I am/was and I can't see the point. If my mum and dad weren't alive I wouldn't care if I died. My life is at a standstill. I don't have my own kids (stepkids of 25 yrs) and I am having a temporary break from work. I have the best husband in the world but I just feel like I am ruining his life with my problems. He deserves someone with life and enthusiasm. I am dragging him down.
You are going through so much and it is understandable you feel this way. Please do not think you are dragging your husband down. Imagine if it was the other way round and your husband was going through this. You would not feel he is dragging you down and he does not think that about you either.
It is so tough having many health difficulties. Have you ever considered therapy? I think it could really help. It is such a lot to take in for you.
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I have the best husband in the world but I just feel like I am ruining his life with my problems. He deserves someone with life and enthusiasm. I am dragging him down.. Ask him! Tell him that you are worried = that you feel that you are 'dragging him down'. You may well be surprised! DH adopted the attitude : It is What it Is : which is DC's tag line ;-)
His words or your depression/guilt talking? It's The Change - does what it says on the tin. I found that writing a list each evening enabled me to tick off what I had done - anything left over went onto the next list. What I could see what that life was static for weeks, then suddenly I was doing more as my ADs kicked in.
MIND charity were helpful when I needed support in 2016, my GP and husband have been great. Half a day at a time, don't look too far forwards. Let your body heal. This too will pass.
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I agree with the others,no way are you dragging him down, I bet he'd be so hurt if he knew you thought that way :'(