Gransnet forums

Menopause

HRT

(82 Posts)
No1gogo Fri 19-Jun-15 17:31:49

Hello ladies, I'm 66 and for a couple of years I've been weening myself off HRT. I got down to 2 or 3 per week then just stopped them. Oh boy, the hot flushes are AWFUL but the worst is that I just can't sleep, I'm sure it's the lack of HRT. Anyone else have the same problem? For 4 days now I've taken HRT again. As I'm 66 is this a bad thing? I really don't want to take sleeping tablets but I have resorted to taking a half one, it's becoming too regular. Anyone have any ideas please?

gillybob Wed 22-Jul-15 11:08:05

So sorry to hear that onlythelonly. My mum is almost 74. She was diagnosed with breast cancer weeks before her 60th birthday. They thought they had caught it early and she had a lump removed, plus radio and chemo therapies. At the same time she had been being treat for a frozen shoulder by our GP which sadly turned out to be bone cancer that had (very unusually apparently) spread from the breast. This in turn lead to bone cancer in various other parts (too many to list sadly) and although she is still with us, the treatment she received for this has lead to kidney failure meaning she is on kidney dialysis for the rest of her life. She can no longer walk.

I know this makes grim reading but the point I am trying to make is that my mum has never taken HRT or the contraceptive pill, drank alcohol or smoked in her life. My grandma (my mums mum) is a fit (for her age) 99 year old. No history of female cancers.

Perhaps onlythelonly there was no connection between your breast cancer and the HRT . We get so many mixed messages it is so difficult to weigh up the pros and cons. Btw my mum told me she sailed through the menopause and had no ill effects whatsoever.

Luckygirl Wed 22-Jul-15 09:28:59

I am sorry to heat that onlythelonly and that you still do not feel well - what an ordeal.

I wonder how they knew that it was caused by the HRT; or if it was just speculation.

granjura Wed 22-Jul-15 08:37:04

I am so sorry to hear that onlythelonly- and so hope you will find help to make you feel better again. x

onlythelonly Tue 21-Jul-15 20:59:06

I am 69 and was taking hrt when I was 50 to help with night sweats,tiredness,depression,doctor thought was due to menopause, and I was put on hrt. Which worked well for about 5years then I had breast cancer had a mastectomy and all lymph nodes and muscle taken away.horrid treatment for 9months and still had to attend hospital every 6months for 10 years yes 10years. Doctors put it down as due to hrt. I have not felt well since...

narrowboatnan Tue 21-Jul-15 20:58:35

Don't wish to put a damper on things, but if your HRT is 'Premarin' do a spot of research as to where it comes from. It's oestrogen is extracted from the urine of pregnant mares who are not kept in ideal conditions, often being kept in stalls for the duration of their pregnancy. There are synthetic alternatives on the market that your doctor can prescribe. Sage tablets from health food shops can help with the hot flushes when taken as per the instructions on the bottle.

Crafting Tue 21-Jul-15 20:30:36

I coped fine with HRT after having a hysterectomy then my GP said you've got to stop you've been on it for too long. I cut down gradually and then stopped for good. Within days I was drenched in sweat. I am claustrophobic and get into complete panic attacks when I get too hot. I felt as though I was suffocating. My GP tried something else (sorry can't remember what ) which made no difference but then suggested an antidepressant [confused). He said that it was sometimes used for hot flushes. It is called paroxetine. At first it didn't seem to help ( except I was asleep all the time) but after a week or so the hot flushes calmed down and although I still get a bit hot sometimes I don't get that terrible feeling of heat that won't go away.

Luckygirl Tue 21-Jul-15 20:19:38

There are unfortunately GPs who truly are unsympathetic on this subject - I am sure that there are Gransnetters who can bear that out!

On the other hand, I would not expect my GP to prescribe something if he genuinely felt it was not in my best interests. I would however expect him or her to refer me to an expert in the subject so that I could get informed advice.

NfkDumpling Tue 21-Jul-15 19:51:26

Thanks Granjura. Phew! I'm on a low dose of oestrogen only!

Surely Luckygirl your doctor would agree it's better for you to have your old HRT patch rather than the cocktail you're on now. The problem may be withdrawing from all that stuff. The change over may not be great. You need to have a long talk with him!

granjura Tue 21-Jul-15 19:43:02

I agree to a large extent. However, I would ask the question - is a GP who is truly concerned about your health, due to their research on the subject (whatever it is- could be on vaccination, statins, or whatever, not just HRT) automatically 'unsympathetic'? One could also look at it the other way and say, in some cases, that it makes them caring and professional, depending on their reasons. I would truly have trust issues with a GP who would prescribe whatever I demand of them, I have to say. Can you see that?

Luckygirl Tue 21-Jul-15 19:31:57

Indeed granjura - people do need to make sure they have the right advice from GP - or, if unsympathetic, ask for a referral to gynaecologist who knows something about it all.

I think the threads on Granset on this subject indicate the degree of uncertainty and confusion around the subject, both amongst women and the medical profession. It is very hard to have the problems taken seriously and it is a bit of a lottery as to which advice you receive.

I have a need for a very specific piece of advice which is: is it OK for someone like me who has no uterus (and therefore only needs oestrogen) whose problems are cured with a tiny dose to go back on a patch at the age of 66? I have no high blood pressure, obesity or other problems.

All the advice (including NICE) does not provide an answer to this. They say that it is not a good idea to restart after 65, but not whether that also applies to the oestrogen only/tiny dose scenario. So, whoever I consult will not have the answer either, as they will be following the NICE guidelines.

Matella Tue 21-Jul-15 19:26:13

My thoughts are that women will stay on HRT for longer as the age for retirement rises. How on earth does one do a days work feeling on no sleep and feeling generally out of sorts much of the time! Just as a matter of interest many of you say that you take a low dose. How low is low? I take 1.25 mg.

nannabo Tue 21-Jul-15 19:20:23

I have been on HRT for nearly 8 years on and off. The off times are the worse thing I have ever experienced. I'm back on them again now and they are the only thing that keep me sane. I do still get the odd hot flush but nothing like they were when I was off them. So I say keep taking them if they are doing you good .

Elegran Tue 21-Jul-15 18:49:42

Yes, "doubles the risk" is rather vague. If it is doubling from four in ten to eight in ten, that is very different from one in a million doubling to 2 in a million. (not that either of these figures is at all relevant, so forget them at once!)

granjura Tue 21-Jul-15 18:34:06

As said, informed choice- and this on a continued basis. So no sweeping advice for all once and for all- Thanks for the link.

Mamie Tue 21-Jul-15 18:24:20

I think the question to ask is "doubles the risk from what to what?"
I have read Dr Ben Goldacre's "Bad Science" and "Bad Pharma" and it really makes you question the basis of some studies and the way statistics are used.
It is worth reading the NICE document in full. It is very interesting on the earlier studies that caused so much concern at the time
As a result of those studies I was told to come off my oestrogen only HRT by my GP, causing me so many years of distressing symptoms.

granjura Tue 21-Jul-15 18:12:50

Only today, Mailonline has reported recent concerns in the USA:

The doubling of the risk of breast cancer was uncovered at the Fred Hutchinson Cancer Centre in Washington in research covering more than 2,000 women aged 65 to 79.

Lead researcher Dr Christopher Li said: 'We found longterm use of combined HRT [containing both oestrogen and progestin] not only doubles the cancer risk, but the magnitude of that risk increases with duration of use.'

Women taking oestrogen-only HRT had no increased risk. In the second study at Harbor-UCLA Research and Education Institute in California, it was found that women on combined HRT suffered larger invasive tumours which were spotted at a more advanced stage.

Scientists compared data from 16,608 women, half who were on HRT and half on a dummy pill. In the HRT group, 245 cases were found while the placebo group had 185.

Researchers wrote: 'These results suggest invasive breast cancers developing in women receiving oestrogen plus progestin therapy may have an unfavourable prognosis.'

Dr Peter H Gann and Dr Monica Morrow, of the Feinberg School of Medicine in Chicago, raised the prospect that HRT may affect doctors' ability to diagnose the disease.

'The ability of combined HRT to decrease mammographic sensitivity creates an almost unique situation in which an agent increases the risk of developing a disease while simultaneously delaying its detection,' they warned.

Last night, Lesley Walker, head of cancer information at Cancer Research UK, said research was needed to see if the studies in the Journal of the American Medical Association were mirrored in Britain.

'Some women only take HRT for a while but others, such as those with osteoporosis, are on it long-term and they will have to consider if the benefits outweigh the risks,' she added.

Most British women taking HRT are on the combined dose. Those who have had a hysterectomy may take only oestrogen.

Read more: www.dailymail.co.uk/health/article-186112/HRT-cancer-risk-65s.html#ixzz3gXyHwWii
Follow us: @MailOnline on Twitter | DailyMail on Facebook

granjura Tue 21-Jul-15 17:59:52

Thanks Mamie- I will. It is indeed important that women should read as much as they can, from specialised qualified sources, and discuss this with their GP and /or specialist/s and make an INFORMED choice. Hence my comment re the dangers of making general sweeping statements saying either 'stop now or else' or 'never ever stop whatever the circumstances' on an internet forum- as it can have tragic circumstances. Each case if different, and some women have much higher risks, for all sorts of reasons, historical, genetic, etc.

Mamie Tue 21-Jul-15 17:48:12

Granjura, did you read the new NICE guidance on here?
www.gransnet.com/forums/health/a1217343-Menopause-NICE-guidelines
It really is very different to some of the things that have been said before.

granjura Tue 21-Jul-15 17:33:20

Sorry to hear about that- have you been to discuss the pros and cons with your GP, and perhaps a specialist? If it was such a small dose, and you do not have high bllod pressure or other similar problems- perhaps it is possible?

I am all in favour of informed choice- but not on Forum advice which says 'never come off HRT, etc- without knowing any of the personal facts and risks for individuals. it is plain dangerous and far too prevalent on t'internet. Sorry Sweetsusie, but you know nothing about the health risks of individuals here on GN- some maybe at high risk of breast cancer, heart attacks or strokes, etc.

Luckygirl Tue 21-Jul-15 17:06:59

Well - it is swings and roundabouts. I am 66 and went off my tiny weeny oestrogen-only (I have no womb but have ovaries) patch about 6 years ago on doctor's advice. Since then I have had: severe continuous migraines, a serious depressive illness and insomnia. I am on an anti-depressant (and I hate its side effects), painkillers, occasional sleeping tablets (Lorezepam) and I am just about to go on to Pizotifen to try and prevent the migraines, but these will make me dozy and fatter!

Sometimes I really do think that I would be better off going back on the HRT and ditching all the rest of this stuff. I really do wish that I had never gone off it. I needed such a minute dose (25 mcg) to keep me feeling well.

Google John Studd - he is a consultant gynae, whom I worked with many years ago. He now works privately and he is absolutely 100% in favour of the continued use of HRT.

granjura Tue 21-Jul-15 16:35:04

silverscarlett- thanks for your 'testimony' - hope is ok now. I must say I am so glad I stuck it out naturally, as I would personally feel very concerned about the risks. I know many will say that it is a question of quality of life- but for me personally, I wouldn't want to have that sword of Damocles over my head. I do think it is a shame that some feel that a doctor will not give advice because it makes medical sense, but just to 'protect their prescribing budget'. There are no speciifc budgets here where I live, and the general advice is that it is not suitable long-term in the great majority of cases.

Good luck to all trying to come off for safety reasons.

sweetsusie Tue 21-Jul-15 16:31:21

All doctors I have discussed this with say the risk is too high for women over 65. They quote: "cardiac arrest." I told them sometimes I'd rather just have a heart attack than deal with the life I have now. Little dramatic, but it's just ridiculous that they are withholding the HRT from women. My quality of life is sick. I have no energy...I never see anyone...
Anyway, if you're on HRT DO NOT STOP!! I know of one woman who is 80 years old and still taking HRT...her health is awesome. I told my doctor about her and she said "Well..but she's been on it for years and years...she not just trying to start it at 65." So you all may have a foundation to stay on it. Believe me, I'm tempted to buy it on line!

sweetsusie Tue 21-Jul-15 16:26:29

Don't go off of your HRT! I'm 67 years old and cannot get HRT at all. I was one of the fools who listened to the study back in 2002 which vilified HRT. I'm still having massive hot flashes/night sweats and my life is miserable. I've tried 3 different doctors and they refuse to relieve my symptoms..wanting me to go on antidepressants instead, because these, too, will stop the flashes. I've been there..done that..I refuse to go back on them. The withdrawals are horrible and the actual therapy makes me like a zombie. I think doctors are just covering their arses here and in 10 years they'll realize how much they have made us suffer without this wonderful therapy (HRT). I did find, however, that when I stop taking Vitamin D, my flashes are MUCH LESS! But, that in of itself, is a whole other issue, isn't it??

silverscarlett Tue 21-Jul-15 14:57:22

I was started on HRT aged 45 when suffering peri- menopausal symptoms. I had not even begun to consider HRT at that stage and had not looked into the pros and cons in any great detail before I found myself taking it on a locum doctor's advice. Of course my symptoms immediately disappeared and I felt wonderful. I raved to my friends about how marvellous it was and had no qualms about taking it, deciding that the benefits outweighed the risks. I began having problems about 5 years later. I have always had larger than average breast size (d cup when I began HRT) and I couldn't ignore the fact that they were getting larger. Not only that, they were becoming extremely painful, think pmt problems times 10! I then developed a large swollen area in one breast that was noticeable through my clothes and was extremely painful to touch. A mammogram showed that the problem was excess breast tissue, which was caused by the oestrogen in HRT. I was told I must come off it as soon as possible and I had horrendous symptoms, similar to all of the above mentioned ones in previous comments. It was so bad I was forced to go back on a different type of HRT, which I was eventually able to wean myself off over 6 months of gradually decreasing the daily dosage, becoming HRT free when I was 55. My point here is that although we are all aware there is an increased risk of breast cancer when taking HRT it is not really widely explained how the artificial hormones in HRT affects the production of breast tissue giving rise to the increased risk. The artificial hormone stimulates the production of tissue cells, but they do not behave in the same way as they do with natural oestrogen leading the breasts to enlarge and become very dense. This is not reversible, and I now am left with size G breasts and excess breast tissue in my armpits which always leads to a recall whenever I have a mammogram test. I really wish I had been better informed before starting on HRT, not least because I thought it meant you would miss the dreaded menopause... Not the case, because when coming off it you are still going to have symptoms as your body is having to adjust to the withdrawal of the hormones, even if they are artificial. It seems to me that in taking it, you are only delaying the time you will have to deal with it! This is only my own experience, and I completely understand that many of you are happy to take it as your symptoms are so impossible to live with. However if I had known then what I know now, I would never have taken it. I hope my experience helps some of you make an informed choice.

Teeny1003 Tue 21-Jul-15 13:47:27

Gillybob I was reluctant to go on HRT in the first place but having taken it I must say it was wonderful. It took me three goes to find the right one as I didn't want a monthly bleed but it was so worth it. I couldn't have gone on as I was. The only problem is coming off it. Nobody actually tells you about the possible after symptoms. I naively thought that the only problem might be the hot flushes - I wish! I'm now trying a tens machine and going to drink soya milk and take soya tablets as they both increase oestrogen levels again. Who would be a woman!