Menopause Matters Forum
Menopause Discussion => Other Health Discussion => Topic started by: Ju Ju on September 09, 2013, 04:10:00 PM
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I went to the gynaecologist today and was told that because of my age and the length of time since my periods stopped, HRT and testosterone is considerably more risky and is unlikely to help the symptoms I am experiencing.
Exhaustion, sometimes extreme, has been a long standing problem, made worse by the menopause then worse again after a virus earlier this year. I've been taking 100mg of DHEA, which seems to help up to a point, for example, I have been able to do some housework and go for short walks.
I was advised to discuss the possibility of my having ME with my GP. I've been keeping going by looking for solutions. I've looked at ME web sites and so it doesn't cheer me up. I always thought people with ME suffered from pain. I do get back pain, but it is usually mild and kept under control with regular visits to a chiropractor. Can anyone advise me what to do next?
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What is the full explanation for M.E. please?
Is that what was called 'yuppy flu' in the 1970s/80s? Usually because the sufferer has caught a nasty virus?
Fibromyalgia causes pain - there are ladies on the Forum who have this condition.
Why is HRT 'more risky' - is there evidence that a course won't ease the symptoms you are complaining of? On what basis does this Consultant judge his decision?
Go to your GP for a discussion.
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Hi Juju
I would try to resist being labelled with conditions that have no known causes or treatments before all other avenues have been explored. It can often be a cop-out for doctors becuase they then don't have to do any more investigations into your symptoms so you just get lumbered with them. A medical "there there, poor you" !
There are many reasons for exhaustion - many of which are a result of hormones eg oestrogen, tesosterone, thyroid, or iron levels, maybe some vitamins too?
How old are you and how long since periods stopped? Is it less than 10 years?
In some cases women are being prescribed HRT to relieve symptoms even if they did not have them treated earlier in meno - in fact I remember reading about someone on here the other day in a similar situation. It is not usual, I think, to prescribe testosterone without oestrogen too but I can't see why you could not start on a low dose transdermally (depending on your age) - which is least risky the further from meno/older you are.
I wonder why your gynae was reluctant?
I really would pursue this if you can - presumably you have had thyroid and iron levels checked recently? Exhaustion is so debilitating that it is really worth doing all you can to see if a hormonal treatment would be beneficial. Do you have a healthy diet and plenty of exercise, minimum alcohol etc - all the usual advice?
Hurdity x
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I am 59 and my periods stopped 8 years ago. I have had extensive blood tests done. Hormone levels are normal for a menopausal woman, apart from testosterone, which is low. Thyroid, coeliac, adrenal glands, iron..... everything seems fine. The only thing that has helped is DHEA. As long as I take this I can get up and do some chores, take a short walk etc. I eat healthily, but don't exercise a lot. I stopped working a few years back as I needed more and more recovery time. I don't smoke, can't tolerate much alcohol. Sadly very few vices!
Sadly, ME is just an umbrella term for where there is no other diagnosis, like IBS. I've started taking my husband to some consultations as being assertive is difficult when you have reduced energy. He is a good resource. Having a name for a condition does help to explain to others why I can't do things and that I am not lazy or uncaring. I feel so frustrated. Ju Ju
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Hi Juju
I understand what you are saying about having a name for a condition to help explain to others about why you feel as you do.
However from what you have said - you do not have ME - as you say it is an umbrella term for conditions with certain symptoms where there is no other diagnosis.
However, you do have a reason for your debilitating symptoms though - low testosterone. You are showing the classic symptoms of what is known as female androgen insufficiency - ie low libido, fatigue and low mood, where other causes have been definitively ruled out.
If your oestrogen levels are normal for a post-menopausal woman, then these will also be low and are very likely also to contribute to your symptoms. I find it appalling that a gynaecologist does not recognise that low oestrogen (although"normal") as well as testosterone can have a profound effect on the body in the post-menopausal years.
Incidentally the latest information suggests that for women taking HRT within 10 years of the menopause and under 60 - the benefits outweigh the risks.
Risks associated with MHT are acknowledged, but benefits derived from MHT will generally outweigh the risks for women under 60, or within 10 years of the menopause
(taken from the Global consensus statement on Menopausal Hormone Therapy - International Menopause Society March 2013)
http://www.imsociety.org/pdf_files/comments_and_press_statements/ims_press_statement_15_03_13.pdf
In your position I would definitely (along with your husband!) ask to start HRT and discuss possible testosterone replacement. Is your gynae NHS through your GP practice or private? Whoever it is, is consigning you to a miserable life, and I would urge you to find a different gynae and read up all you can on this site and elsewhere.
I would start very gently with a low dose estrogen patch (eg Estradot 25 mcg) and go on from there. If you still have a womb you will need progesterone as well and Utrogestan is the bio-identical option and probs best to start on this at your age. If you do start this you will be advised to take it continuously but I would not do this as progesterone has a sedative effect. This means you would have to re-start a cycle. A good gynaecologist specialising in menopause would tailor the dose of progesterone to the oestrogen dose so that you did not have to flood your body with progesterone.
You may feel that this is too much at this stage - having bleeds again -but nothing is easy and unfortunately as women there will be some drawbacks to whatever you choose.
There are several women on here in their 60's on HRT (myself included - I am 60), and some who have just started even in late 50's or 60 ( someone recently), because symptoms are so bad.
There are risks, but the risks are small and many of us prefer to get good quality of life while we are still young enough to enjoy it - than years of hardship and misery!
Hope this helps and do keep in touch.
Hurdity x
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I've always thought I might need some testosterone Hurdity but getting it has proved very difficult. Thank you for this interesting post.
Taz x
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My GP told me that my voice would lower and stay so ........ I hoped testosterone would make me feel sexy again ::)
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my daughter has been diagnosed with ME. It arrived after a debilitating virus she had last Christmas, a bit flu like. However she never really got better and suffered exhaustion, headaches, pain in the joints and a rash all down her neck.So all this time later and she is still very low, but tries to 'manage' it and goes to bed whenever there is an opportunity.
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pansy - has your daughter been tested for lupus? It's just the mention of the rash on her neck which made me wonder. Quite often lupus is misdiagnosed as M.E. but over time different symptoms develop which can lead to lupus being diagnosed instead.
Taz
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Thank you, Hurdity. You seem to be very knowledgeable, far, far more knowledgeable than my GP. She referred me to the endocrinologist first to check adrenal gland function, which was fine, but I was told that testosterone wouldn't help and that I couldn't get it on the NHS. My GP gave me the names of 2 private gynaecologists, both mentioned in the specialist section. I went to see the closest one. She said if I really wanted, I could trial HRT with testosterone, but was very discouraging. I have been taking a 100mg DHEA (recommended by the psychotherapist specialising in sexual matters) to tide me over as I felt so rough. It has helped in a limited way, which I thought was an indication that this is a hormonal problem. The gynaecologist said she had no knowledge of DHEA as a supplement, only that it is a precursor of testosterone. I have an appointment to see another GP tomorrow, as the one I had been seeing is away for a while. Your letter has given me hope and I shall do some research before I go. Feeling like this is miserable and my world has shrunk as I haven't the energy to do what I want to do. Yes, Taz, testosterone is difficult to get as the implant and patch have been withdrawn as the drug companies weren't making enough money. I am a soprano and can reach the high notes when I sing, so I might lose that, but at least I will have the energy to sing ......with a sexy voice? Thank you again, Hurdity. Ju Ju
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Ju Ju, I've had M.E/CFS since I was 28 (I'm 54 next weekend :o) and what you're describing sounds more like chronic post viral fatigue, as if I understood right, you started to feel so ill after a virus? It's true that M.E can follow a virus, but so can debilitating fatigue for a few months, especially as we get older. Mostly the blood test results are normal with M.E , so it is a diagnosis of presumption and exclusion to an extent, but it's really common to have aches and pains and inflammation, sore glands and sore throats, maybe even slight fevers, when you first become ill.
Do you feel as if you've had bad flu and just haven't recovered?
I've not heard of DHEA (sounds interesting) but vitamin D and vitamin B12 (or multi B) help a bit with fatigue as reportedly does co enzyme Q10. I also take magnesium. Very old fashioned, but I used to have vit B12 injections (probably another impossibility on NHS now, like testosterone, as you say).
Have you shown up as Vit D deficient?
I hope you get some answers soon. I know how tiring it is trying to get the answers and to keep doing something. Just resting all the time can make fatigue worse, if that makes sense. Muscles get weaker too. And look after your gut, as IBS can make fatigue much worse. x
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I had Glandular Fever in my early forties, it left me with severe bouts of fatigue which took years to lessen, even now I feel the effects at times,
this type of virus and similar ones can stay in the body (lie dormant) and cause fatigue and exhaustion and not show up in blood tests.
http://answers.google.com/answers/threadview/id/66601.html
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Happy birthday Oldsheep! :) I love your chosen name! I'm sure there is a story behind that.
I 've seen a GP, different one as the one I usually see, as she is away for a while. I went with a letter from the private gynaecologist I saw, which contained a clear account of everything we had discussed. The GP suggested I email the gyno for a clearer explanation of the risks of starting HRT with Testosterone. I am 59. I was also reassured that if ME/CFS was being considered then I would be referred to a consultant and that anything that hadn't already been considered would be looked at. I have had IBS since early teens. Alongside that I have been aware that my energy levels were compromised to some extent, noticeably lower after childbirth, then more so after menopause. I had a virus in March, complicated with asthma, but feel that I haven't recovered. DHEA stands for a very long word! It is a precrusor for Testosterone and not available in the UK only online. I took it only with expert advice as a temporary measure and it did help for a while, but not so much now. My limbs feel heavy and I have to gear myself up to do anything, but I am not in pain, other than mild back pain which is probably due to poor posture. My glands feel sore when IBS is severe, but other than that not a problem. I take B3, but have no idea if I am lacking in ant nutrients. How do you find out?
Silverlady. I believe IBS started when I had gastric enteritis at a time of great trauma. Low energy was always attributed to the IBS.
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Glandular Fever.
Rheumatic Fever.
Other viruses, sometimes the patient isn't aware of feeling particularly ill, just 'off'.
Can leave the sufferer feeling depleted. Of everything. Some people recover others have 'good' days which they learn to manage. My Aunt developed ME after a sudden hysterectomy with traumatic bleeding. I think a sympathetic GP is essential!
For me the trick is when I feel 'well', not to do too much but simply 'be'. Otherwise I use up energy I probably haven't got !
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As my husband says it is as it is and it is your job to be the best you can and if that means continuing your research into buying houses under the hammer, escaping to the countryside and buying houses home or away, then so be it! At the same time, I still should seek treatment if it is available. Thanks for your posts. They help.
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Hi Ju Ju
I don't know when your birthday is but I would get some info from your gynae asap. It may well be that the gynae quotes the standard risks based on the Women's Health Initiative Study. Once you reach the magic 60 it will be more difficult to persuade them to let you start - there is something about that age which makes the medical profession decide we have to stop.
Yes I have read about DHEA - but it would be far better I think in your case at least to try with low oestrogen ( and prog) and some testosterone - since you were shown to be low in this. Insufficient information is available on dosage and safety of DHEA long term, so it cannot be licensed here, although preliminary trials have been promising, I recall.
Do read this statement from the British Menopause Society & Women's Health Concern - which gives their 2013 recommendations on hormone replacement therapy. This is the most up to date information.
http://min.sagepub.com/content/19/2/59
If your gynae refuses to move - I would have suggested getting a second opinion eg contacting Dr Currie for the phone consultation but unfortunately this is no longer possible - I imagine it was too popular and taking up too much time! If you decide you do want to start HRT then you may have to be prepared to insist that you are willing to take the risks, or even try a different gynae? On this site Dr Currie herself says that approx between 50 and 60 the benefits are greater (on average) than the risks anyway.
http://www.menopausematters.co.uk/balance.php
Provided your diet is healthy and balanced - with plenty of fruit and vegetables and low in fat, refined and processed food, then you are very unlikely to be deficient in any nutrients - ire vitamins and minerals. If you have a complete blood test ( for fatigue) which I presume you have had done, then some B vitamins are tested anyway.
If you had a virus in March then you could be suffering from some post-viral fatigue too, but if your hormone levels are low - then I would want these to be as optimum as they could be and see if it made a difference. Sorry I don't know about IBS and its effects.
Good luck with it all and try to keep your spirits up! Great to have a sympathetitc husband!
Hurdity x
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We have several threads on Irritable Bowel Syndrome - have a look via the search button ;-)
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I've had a letter back from the gynae, who whilst saying the potential risks outweigh the benefits, has said I could try a form of HRT called Livial or HRT with testosterone replacement for a short 3-6 month trial. I will be 60 in March.
My gut feeling is that low testosterone is affecting my energy levels and has been for a long time, but there is something else going on as Hurdity suggests maybe post-viral fatigue, The level of exhaustion was never like this before March. Insomnia doesn't help. Sleep is not refreshing. I'm feeling low today as I looked after my gorgeous 11 month old grandadson this morning, but couldn't enjoy it as the crashing weariness descended. Fortunately my husband came back and was able to take over. This is knocking my confidence in dealing with everyday life.
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It's good that you are giving Livial a try Ju Ju - hope it works for you. Hopefully even though you will be 60 when the trial ends, as you are aware of the risks, you will still be able to get it prescribed. I think it's a shame it's not in patch form so that older ladies could be prescribed it more readily.
Taz x