Menopause Matters Forum
Menopause Discussion => Postmenopause => Topic started by: dianad on July 19, 2024, 08:38:03 AM
-
Im 4 years now in my menopause and had dexa scan recently and was diagnosed with osteopenia, any suggestions ladies? Anybody else having same problems? Thanks
-
Morning. Were U not given a diet sheet and advice at the appt.? :-\
10 mins brisk walking 3 times a week initially, getting into the sun or taking a VitD supplement. Plenty of fruits and veg in your diet, cutting out processed foods as much as possible. Whole fat milk. I think that ice cream comes under that ;-).
How do U feel over all and what triggered the scan appt.?
-
Are you using HRT? If not, my suggestion would be to look into starting it. It's not too late to reverse the process but you need to start now. There is medication for osteoporosis but apparently it is not as effective as HRT and the side effects are grim.
I'm afraid all the diet and a exercise in the world are not going to replace oestrogen which is most probably the cause of osteopenia.
-
I second the above - lifestyle advice is fine but why wouldn't someone be doing all that anyway.
HRT is actually licensed for the prevention of osteoporosis even if you have no or mild symptoms of menopause.
Both my parents have osteoporosis and my dad is crippled by it since his spine collapsed. He is on high dose opiates painkillers and has no quality of life. Bisphosphonates didn't slow it down at all, and there's no good treatment once you start fracturing.
Please don't ignore this shot across the bows.
I plan to be as aggressive as I need to be in order to avoid osteoporosis for myself, there is no theoretical risk of HRT that scares me more than ending up like that. One in 7 women get breast cancer and 90% survive but one in 2 get osteoporosis and the mortality rate from a hip fracture is around 30%.
-
A lot of problems these days is due to children in the 1980s/90s not eating a full diet including dairy. As well as Education Authorities selling off school playing fields for housing! Then deciding that the cost of a coach to take children out and about, i.e. swimming or forest school, too expensive >:( and now women are reaping the results of those decisions :'(
Let us know how you get on dianad ?
-
When I turned up at gino, aged 45, complaining of excessive sweating, like never before, he said: look, you could go on HRT that should help but it's fairy new so allbis an experiment, really but one thing for sure about it is that it protects against Osteoporosis.
Well, my Grandma spent last five years of her life in bed because her bones were so broken so I said yes.
Fast forward, years of unexpected mental jazz, sweats, insomnia, you name it.. but bloods fine, pressure fine, no failures of any organs...no breast cancer!
Came to 63, gino calls and say doses must be decreased.. Well fine, I said, thinking she knows what she's doing...
5 years later, back pain, followe by XR, and sudden outcry: OSTEOPOROSIS!
How come, I ask. I am on HRT!
Oh, HRT does not protect against, he said...
So DXA scan next, and it turned out -1.8 Osteopenia, plus degeneration of lumbar section with rings slipping off each other...now 6 years aftervthat decrease of HRT...
I am sure, by now, all here are sick and tired to read about.
Well I am pissed!
It, HRT, either protects you or not!
Can, medical profession make their minds up, please!!
It's only ONE IN TWO women who develop Osteoporosis after Menopause... and 1 in 5 men!
...so, now you know why it's not such a big deal to anyone...yet!?
DXA scan next
-
Sadly nothing can prevent it in 100 percent of people.
Some will take HRT and still get osteoporosis.
BUT the chance is a lot lower, and the severity of those affected is less.
I heard one expert stating it prevented about 50% of cases.
Dose also matters - I believe most women are under treated.
Androgens are important too yet are largely ignored.
I will never let my estradiol fall below 300pmol/L, always have some form of androgen replacement (currently dhea as I am on a combined pill) and will get regular DEXA scans from 50, even if I have to pay out of pocket
-
orrla, the decrease in oestrogen is probably the problem. Do you know what your oestrogen blood levels are and what type/dose of oestrogen are you taking? Dose is very important if you are trying to prevent osteoporosis hence the magical 300 pmol that experienced clinicians always aim for.
-
I've never taken system HRT and no idea about my estrogen levels. But my children are 80s children and had a good diet were never in, always outside having adventures as were most others where i live. It's today's children we should worry for down the line.
-
According to NHS:
https://www.nhs.uk/conditions/osteoporosis/prevention/
-
orrla, the decrease in oestrogen is probably the problem. Do you know what your oestrogen blood levels are and what type/dose of oestrogen are you taking? Dose is very important if you are trying to prevent osteoporosis hence the magical 300 pmol that experienced clinicians always aim for.
Yeah.. that's why I decided to go on HRT. And the, a doctor decided to decrease it. And here I am.
If we are not to trust medical professionals, whom shall we trust..?!
Google?
-
orrla, the decrease in oestrogen is probably the problem. Do you know what your oestrogen blood levels are and what type/dose of oestrogen are you taking? Dose is very important if you are trying to prevent osteoporosis hence the magical 300 pmol that experienced clinicians always aim for.
Yeah.. that's why I decided to go on HRT. And the, a doctor decided to decrease it. And here I am.
If we are not to trust medical professionals, whom shall we trust..?!
Definitely not google and I have very little faith in the medical profession, they all give contradictory information. From now on I will be reading reliable accounts of things based on proper research and if in doubt getting at least one more opinion
Google?
-
Thanks for all replies, im on HRT patches evorel conti, just recently started, was bleeding after few months, stopped, discovered a cyst on my ovary but was told to restart HRT anyway, so at the moment applying 1/2 a patch twice a week and vagifem.
-
orrla, the decrease in oestrogen is probably the problem. Do you know what your oestrogen blood levels are and what type/dose of oestrogen are you taking? Dose is very important if you are trying to prevent osteoporosis hence the magical 300 pmol that experienced clinicians always aim for.
Mary, Please advise!
I know now the decrease caused numerous problems, that's why I went to see private gino, and asked for tests. Result came back stating '67' with his comment 'low' but stated no unit. (We had a whole thread about it here..titled 'blood tests results'..)
I am on Evorel Conti from 2018.. (after Evorel 100 and Mirena for years). I am now 69.
Since I saw him, the gino, on 27/06/24, I add 1/2 patch... I feel tiny bit better but far from wonderful.. I sweat at night, get up, sleep in ca 2 hrs blocks, on and off.. I sleep 5 - 7 hours max! I have Estring but it feels as it's running out sooner, after 2.5 mths not 3.. so, it seems, that increase by 1/2 patch done nothing to VA..!
Getting up most mornings feels sh.. Weather changes set off vibrations in my whole body, body balance not right..sort of dizzy..
Too soon to expect change?..
I am booked to see that gino again mid September...probably another test, and ..more cash! .. but:
After I read you above, suggesting to get Oestrogel online, I am thinking now...
What if I try and buy it online, and top that Evorel Conti up, and see what happens..?
But I am concerned, that I might spoil something by doing that... Will progesterone I get from patches be enough..?
Also, I have no experience with gel.. How much of it, do you think, I ought to use, as a top up, and how often, to try for a while if it makes things any better..?
Any suggestions?
Many thanks!🤗
-
orrla, you have nothing to lose by trying Oestrogel and I would suggest one pump. That is an incredibly low oestrogen reading so you are obviously not absorbing the patch. The progesterone component of Evorel is norethisterine which is very strong so for now I would just add the Oestrogel and see if you have any improvement. You can ask the gynaecologist to scan you in September to check your womb lining.
Doctors seem to tell women to reduce their HRT as a kind of knee jerk reaction. I'm not convinced there is any meaningful thought behind it so I always ignore it and do my own thing. My gynaecologist says "they" (I'm not sure who "they" are) don't recommend HRT but they never try to stop women taking it and they would fail if they did. In my experience, most gynaecologists know very little about HRT.
I would definitely order the Oestrogel immediately and give it a go. I know a lot of women on here like patches but I found them to be weak and ineffectual.
-
Hi Mary,
Thank you for your reply!
Are you saying one pump per week or one pump every day..?
...
Yes, look what happened to me after that decrease in 2018! .. She was there staring at me until 2022, while I bragged about low energy, spine issue, VA, UTI... I look back at it with disbelief..and bash myself for not pressing hard, but I think something was going on in that clinic and she was told to decrease. Her bye bye to me was cutting Testosteron down, after blood test for first time ever, as well, and then she left NHS. Now I am left with mid 30s male GP, or young ginos at that clinic who already caused mess while dealing with my Estring and VA.. Another GP, after I came suspecting prolapse, complaining about burning, send me off with a prescription for out of stock moisturiser. I had a massive UTI like exactly four weeks later!..I got on Friday evening at bank holiday weekend..for 4 nights!!
It terrifies me when I look at the quality of that care I get from NHS here..! What next?!
Now they are running me towards disability.. I need spine surgery but I am not even referred yet. Over two month and they can't find any consultant to deal with it.. I am trying very hard not to freak out!
Sorry .. but
-
It would be one pump per day.
One weekly isn't worth anything!
Have you got the resources to see a private menopause specialist?
I would really recommend this rather than trying to muddle through by yourself without any medical care.
-
Thanks!
I found one, an only one Consultant that advertised as post meno and hrt, and pelvic issues specialist. Seen him once, did blood for Estrogen and Testosterone, both came back low, and walked out with his letter to my GP to increase patches by half with review after three months. They made fuss, gave me only three months supply of both, so I will see him again mid September.. Intend to tell him to forget GP for now, and test some more before finding the right dose and then go to GP..
Honestly, these reactions to HRT are so annoying! ..as if I wanted to buy dynamite!
They still warn me of breast cancer!! I am 69, on HRT for twenty years, wouldn't I get it by now?!
Maybe is too soon for that extra half patch to kick in properly as its ca 5 weeks now.. But because I will see him anyways, have blood test again, and suspect half patch will not reach that 300 ... I will try, top it up a bit, if I can buy it.. Ordered it, paid, but they called me and asked more questions..No confirmation of postage yet..
-
At the moment applying 1/2 a patch twice a week and vagifem.
That's 25mcg.
It's not enough to improve (and may not even maintain) bone health.
-
orrla, I would be inclined to ditch the extra half patch and just add one pump of Oestrogel every day. It will take a few weeks to kick in but I think you will notice a difference. After a few months, you can have a uterine TVS scan to check that the progesterone in the Evorel patch is providing enough womb lining protection. If not, you can then top up the progesterone - you obviously tolerate the norethisterine in the patch well.
Doctors always attribute HRT to breast cancer in the same way they attribute smoking to all types of cancer even if someone hasn't smoked for 50 years - it's a bit like telling someone they did it to themselves which is a lie not to mention cruel. I had a conversation with a doctor once who was banging on about a conference he had attended in London and someone had a patient who was taking tibolone and had developed breast cancer. I quickly reminded him that there will always be women who use HRT and get BC in the same way that women who don't use HRT get BC.
-
I know, it's ridiculous ..
From my old circle, I know at least three women who had breast cancer. None was on HRT!.. One told me she did not take any because of that scare..and got it anyway!
Well, that online pharmacy I attempted to get Oestrogel from, refused! ..I'll try one other.. don't know what to tell them..🤔
Many thanks Mary!🤗
-
The protective effect of HRT is dose dependent.
It doesn't matter how much you are plastering all over yourself if you're not absorbing it. (Ie I'm on 12 pumps of gel - TWELVE - with serum estradiol about 325pmol.)
Ideally you want 450pmol + to actually improve and replace bone, not just maintain.
Evorel Conti is only a 50mcg patch which is quite a low dose.
This is why you can't trust the NHS with HRT. It's completely inadequate and GPs don't know what they're doing... At the moment if women don't do the research themselves and advocate for their own health, they will pay the price. It shouldn't be like that.
-
The protective effect of HRT is dose dependent.
It doesn't matter how much you are plastering all over yourself if you're not absorbing it. (Ie I'm on 12 pumps of gel - TWELVE - with serum estradiol about 325pmol.)
Ideally you want 450pmol + to actually improve and replace bone, not just maintain.
Evorel Conti is only a 50mcg patch which is quite a low dose.
This is why you can't trust the NHS with HRT. It's completely inadequate and GPs don't know what they're doing... At the moment if women don't do the research themselves and advocate for their own health, they will pay the price. It shouldn't be like that.
Interesting re levels of 450. Where did you read that? Do you reckon it's possible to build bone even in the few years post menopause if have levels this high? I haven't come across a study that says that, be great to show to my GP who is clueless .
-
I am going for a Dexa Bone Density Scan next week, been on 1 pump for 20 yrs but reduced to half a pump recently probably not such a clever idea, started getting hot flushes and palpitations so back up to 1 pump. My latest blood test showed an Oestrogen level of <88 so definitely need to go back to a pump, at least. Hoping the scan is ok, will keep you posted.
-
My meno was brought on by chemo at 46. At 48 I fell and broke my hip, dexa scan showed osteopenia. 5 years on and I'm about to go for another scan ti see if there's any change. I've only been on hrt for the last year so will be interesting. There is a podcast on osteoporosis in the Zoe science and nutrition series which is really interesting.
-
"More than half the women [on HRT] were inadequately replaced to protect against osteoporosis. Furthermore, the MSS was of no value in screening for those with low serum E2 levels. Serum E2 levels should be monitored in women on HRT for osteoporosis prevention and the E2 dosage adjusted accordingly."
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1312923/
"A serum estradiol of at least 250pmol/l is required to promote bone metabolism and reversal of bone loss – change estradiol dose and brand as required"
https://www.chelwest.nhs.uk/professionals/gp-hrt-advice-guidance
"Oestradiol is the most satisfactory oestrogen to use, either by tablets, patches, creams or implants in a dose which produces an oestradiol level of at least 300 pmol/l ."
https://www.studd.co.uk/osteo_oestro.php
It's very easy to find research papers and it's important to use google and do it. There is too much misinformation out there if you are a woman, otherwise. To find these papers randomly, I just typed in "HRT osteoporosis serum estradiol pmol"
-
Let's not forget clinical experience.
A lot of specialists like the late Professor Studd carried out research but he also had many years of clinical experience so he knew how much oestrogen most of his patients needed for bone protection. Ditto how much progesterone most of his patients needed for womb protection.
I was offered a DEXA scan at his clinic for a fee but I didn't need it because I had already had one in Spain quite recently.
The general consensus is that a 300 pmol blood level of oestrogen is the minimum needed for bone protection. The problem is the NHS don't want to cough up for hormone blood tests and they don't routinely offer DEXA scans.
I'm sorry to say that there is no way the NHS can afford to support women with routine DEXA or TVS scans and you will only ever get basic HRT and reactionary TVS scans if you have abnormal bleeding and a DEXA scan if they suspect you have osteoporosis.
-
Im 4 years now in my menopause and had dexa scan recently and was diagnosed with osteopenia, any suggestions ladies? Anybody else having same problems? Thanks
A diet rich in fruits, vegetables, lean proteins, and whole grains supports overall health and bone density.
-
"More than half the women [on HRT] were inadequately replaced to protect against osteoporosis. Furthermore, the MSS was of no value in screening for those with low serum E2 levels. Serum E2 levels should be monitored in women on HRT for osteoporosis prevention and the E2 dosage adjusted accordingly."
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1312923/
"A serum estradiol of at least 250pmol/l is required to promote bone metabolism and reversal of bone loss – change estradiol dose and brand as required"
https://www.chelwest.nhs.uk/professionals/gp-hrt-advice-guidance
"Oestradiol is the most satisfactory oestrogen to use, either by tablets, patches, creams or implants in a dose which produces an oestradiol level of at least 300 pmol/l ."
https://www.studd.co.uk/osteo_oestro.php
It's very easy to find research papers and it's important to use google and do it. There is too much misinformation out there if you are a woman, otherwise. To find these papers randomly, I just typed in "HRT osteoporosis serum estradiol pmol"
Thanks Joziel, I had come across the 300 level before and I am routinely testing bloods to ensure my levels are above this. I was interested when you said that need over 450 to actively build bone ( so levels under 300 may prevent bone density getting worse but won't improve if scores are already bad, which mine are). Wondering if I should increase my patch to reach these levels
-
Also a bone scan should be taken in the pelvis/hips area where the bone is thickest. Let us know how you get on?
-
I agree with Mary that the treatment of peri/menopausal women on the NHS is seldom optimal - there are resource issues but it would save so much money long term if significant numbers of osteoporotic fractures were prevented.
Sadly most women with osteoporosis only get a DEXA after sustaining a fragility fracture - by which time the diagnosis can be made clinically anyway!
Also the doses of estrogen used in routine clinical practice have decreased substantially since the era in which hormone therapy was found to protect bones, and this can no longer be universally assumed.
I think there are a lot of women feeling falsely reassured on homeopathic doses of estrogen, which is why this data is so important.
-
Totally agree bombshell and Mary.
The NHS is just woefully inadequate and struggling so much already. It can't cope with this very complex, individualised and nuanced use of hormones which is needed for optimal hormonal care. Women either have to educate themselves and persuade their doctors to co-operate (hmm) or go private... It really sucks.
I'm doing my taxes at the moment and I've spent about £2K in private healthcare this year. That excludes supplements, it's doctors' appointments, blood tests and medication. For private thyroid care and private menopause care. And I get my HRT on the NHS (excluding testosterone, which again the health service lets us down on).
By the way, there is research showing that testosterone is also protective for osteoporosis - and you can't get that in most places in the UK unless you go private.
-
Ha!
That's exactly what I was doing today!
£3200 spent since first back pain, in Feb 2022... after cut in half of my HRT by NHS Menopause Clinic... because I was 63 so 'you don't need it'..!
Now they say my collapsed spine is 'wear and tear' , because I am 69 by now so, really, fit for rubbish bin only..?
..never mind all consequences of it eg. prolapse, bladder issues rectal problems, loss of balance, inability to function...
You're old! ..they scream. Get on with it!
-
So sorry that's happened to you orrla.
Have you managed to get back on a therapeutic dose of estrogen privately?
Your spine shouldn't have collapsed at 69.
My dad's spine has collapsed in his early 80s and that shouldn't have happened either.
-
I often think more men should be on T replacement. Just because they have a more gradual decline, doesn't mean they don't need any...
-
So sorry that's happened to you orrla.
Have you managed to get back on a therapeutic dose of estrogen privately?
Your spine shouldn't have collapsed at 69.
My dad's spine has collapsed in his early 80s and that shouldn't have happened either.
Hi! Thanks!
On it, on an increased dose for 6 weeks now. Feeling touch better, more together but not there yet. Next appointment mid Sept. But worried as hell about my spine. My GP done nothing so far. Keeps saying he will but am not even referred anywhere..
Looking at taking private insurance now for, NHS really fails me.
-
There was a lot of osteoporosis on my mother's side of the family. To my knowledge her father and her older sister both suffered with it as did she, and I believe one of her aunts.
There definitely appears to be a genetic component. They were all naturally slender and always on the go - working and doing chores rather than taking part in sports. Because of that my GP was happy for me to start HRT at 53 and I've remained on it for 15 years at what they call a 'bone sparing' dose. I do have good bone density. Whether this is down to the HRT or because I take more after my father's side of the family I really can't say!
My mother had spontaneous crush fractures of her spine in her late 60s. She took bisphosphonates which was the treatment of the time. Somehow this miraculously got her through several very nasty falls without sustaining fractures as the years went by.
-
My Dad was part of an osteoporosis study: don't know how he was chosen or which company/NHS arranged it. His mother had a Dowager's hump from late 60s.
-
https://www.osteoscanuk.com/
I was diagnosed with osteoporosis in 2023 having had a bad trauma fracture to my wrist. There is an excellent FB page called Osteoporosis UK Friendly Support and Natural Options. A wealth of information and I’ve booked one of these REMS scans for early next year.
-
I would be very wary of commercial direct to consumer bone scanning service that may not be clinically validated or regulated.
How would you know these results were accurate? Also what if it shows osteoporosis, you would still need a DEXA as no clinician would treat based on this.
A DEXA scan is still the gold standard for assessment of bone density, and until there are multiple peer reviewed clinical studies in medical journals comparing this method to DEXA, I would avoid - it isn't too expensive to get a DEXA privately if you have to, however many of us have factors such that would qualify us for one free on the NHS.
-
This scanning centre is run by an orthopaedic surgeon. It is a far more in depth way of scanning but I’m well aware that it may or may not say if I’ve got osteoporosis. I had a DEXA scan which told me I had. It’s to get a more detailed analysis with ways of managing the condition without being pressurised into taking the NHS recommended medication.
-
I went for a Dexa Scan yesterday am waiting for my results. :-\
-
Good luck Cassie, please pop back and share your results as well as your treatment as this is really helpful to others.
It concerns me that today's doses of estrogen are much lower than those shown to promote bone health so I am always interested to hear what people are taking and if it's been effective from a bone point of view.
-
Good luck Cassie, please pop back and share your results as well as your treatment as this is really helpful to others.
It concerns me that today's doses of estrogen are much lower than those shown to promote bone health so I am always interested to hear what people are taking and if it's been effective from a bone point of view.
What stunts me is that your average GP does not know all that! After my DEXA, mine told me that HRT does not protect..
The chief reason I poisoned myself with HRT from age of 45 was to protect myself from any issues with my spine...! ..but no, they had to fiddle with
it, and at 63 cut it down.... because women at old age do not need hormones..???
And here I am! ..with a collapsed spine!
Bravo, NHS Scotland! Yupee, you win!
..off to a wheelchair now!
Good luck to me!