Women are taking risky mega-doses of hormone replacement therapy (HRT) because of mistaken beliefs fuelled by social media, top specialists have warned.
Speaking to The Mail on Sunday, one GP leader claimed she regularly sees patients who have decided to up their medication beyond the safety limits set by drug makers – and blamed the messages proliferating online, saying ‘more is better’, for the phenomenon.
Others had been told by private doctors they need ‘abnormally high doses’ – two or three times the licensed maximums – in order to control mental health symptoms. All the experts we spoke to said until a few years ago they would rarely, if ever, see patients on such large HRT doses.
Dr Katie Barber, who runs a GP-led NHS gynaecology service in Oxfordshire, said she believed online forums where women swap tips on menopause treatment were being used by some to push unsafe messages.
‘Social media has been really positive in allowing women to support each other during the menopause. It’s good that people are talking about it and looking for ways to tackle problems, instead of seeing it as something they just had to endure,’ she said.
Dr Katie Barber said she believed online forums where women swap tips on menopause treatment were being used by some to push unsafe messages
‘But we are aware there are people pushing views that aren’t evidence-based or safe, such as needing to use double or triple the licensed maximum dose of HRT to control mental health symptoms.
‘We know it’s having an impact because women are going to their GPs and asking them to provide HRT in abnormally high doses. They get referred to us because the GP is not comfortable prescribing outside of the guidelines.
‘When we ask the patients why they think they need such large amounts, sometimes they will say it’s on the advice of a private doctor or sometimes they’ve decided off their own bat – they just keep on increasing, thinking more will make them feel even better.
‘But HRT doesn’t work like that. In fact, very high doses can cause symptoms to worsen. We advise these women to reduce their dose, due to the safety concerns.’
HRT contains compounds similar to female hormones oestrogen and progesterone that wane in middle age. It alleviates some of the worst symptoms of the menopause, including hot flushes, insomnia and low mood.
Typically, women are prescribed oestrogen in patch, gel or spray form, and the drug is absorbed through the skin. Progesterone is usually given as a capsule. Both hormones can be combined in a pill, too. These treatments are safe when prescribed within licensed doses but experts believe excessive amounts of oestrogen can trigger palpitations, anxiety and aggressive mood swings. Patients can also suffer tachyphylaxis, a condition in which they need ever more hormonal treatment to feel ‘normal’.
In the longer term, if doses of oestrogen and progesterone are not taken in the right balance, the womb lining may thicken – known as endometrial hyperplasia. This can lead to heavy bleeding and increases the risk of womb cancer.
There is also concern that higher doses of progesterone – necessary if high doses of oestrogen are taken, in order to protect the womb lining – may increase the risk of blood clots and breast cancer.
RISKY: Women are using both oestrogen patches and gels far beyond the recommended dose
Dr Barber, who also works in private practice, says: ‘Roughly one in ten women we see now are on two or even three times the maximum dose, and I suspect this is just the tip of the iceberg. There have been patients I’ve seen on even more than this.
‘It’s only in the past few years we’ve seen this sort of thing. Women may occasionally need higher doses – such as younger women suffering premature menopause. But these are exceptional cases.
She adds: ‘You wouldn’t just double or triple the dose of blood pressure medication if a patient’s blood pressure wasn’t being brought under control, because doing so isn’t safe – you’d look at other ways to tackle the problem.
‘It’s concerning because we just don’t know what such large doses could do to the body in the long-term, as there is no data. Safety studies into HRT in these doses have not been done. The huge worry is there could be an increased risk of womb and breast cancer.’
Guildford-based consultant gynaecologist Dr Karen Morton has seen a similar picture, with women on extreme high doses of HRT now being referred to her on a weekly basis. She believes media coverage and ‘celebrity razzmatazz’ around the menopause has fuelled unrealistic expectations about what treatment can achieve.
‘It’s getting out of hand, with patients thinking that every problem they have is being caused by their hormones,’ says Dr Morton, founder of Dr Morton’s women’s health helpline.
‘They’ve been led to believe higher and higher doses will solve their anxiety, tiredness, forgetfulness or unhappiness, when that simply isn’t the case. Some symptoms are due to hormonal decline, but many may not be.
‘Sadly, there are organisations out there that are prepared to prescribe excessive quantities of HRT because it’s a huge industry.
‘Women are also adjusting their doses in an almost cavalier way, saying, “I was feeling low today, so I took another pump of gel.” ’
Commenting on the issue on The Mail on Sunday’s Medical Minefield podcast this week, menopause specialist GP Dr Naomi Potter said: ‘A few years ago, nobody talked about menopause and HRT. There was very little information available. But the pendulum seems to have swung so far the other way.
‘I think intentions are all well meaning, and it’s positive that women are helping each other and offering support, but there seems to be a lot of self-prescribing and prescribing outside the guidelines.
‘We’ve had patients come into our clinic who got their HRT from friends or got it online and they’re self managing with advice from coaches or nutritionists. It’s dangerous territory.
‘GPs and gynaecologist are adequately qualified to manage the menopause. If you are looking for a more advanced practitioner, then you need to be looking on the British Menopause Society website and their list of specialists.’
Social media posts seen by this newspaper reveal the extent of the situation. In one forum, in October, a woman says she is on four times the licensed maximum dose of HRT patches and ‘tops up’ with gel ‘if I feel awful’.
Another responds by saying she is on three times the licensed maximum of patches ‘and two to three pumps of gel’. She adds that her GP hasn’t yet questioned the dose and that she’s ‘trying to stay under the radar’ as she’s had ‘run-ins’ with doctors before.
In a thread in March, a woman writes: ‘I’m on 100mcg [patches, the maximum licensed dose] and my doc advised me to try to get up higher but it was too much.’
Another user then posts: ‘Try adding in half a pump [of gel] to start and see how it goes.’
Meanwhile, on a public forum on Facebook, in May, a user writes: ‘I’m thinking of stopping my [HRT] patches. Got rid of the hot flushes/sweats but the weight gain is awful and I have swollen feet and constant headaches.’
Other users chime in with advice: ‘You need to increase your dosage,’ writes one. Another comments: ‘I’d suggest increasing your patches rather than coming off them maybe? I increased mine and headaches gone, aches gone, so much energy!’ A third says: ‘I’ve gone up to one and a half patches.’
A Mail on Sunday investigation, published in April, revealed concerns about one private clinic, Newson Health, that prescribes higher than licensed doses of HRT to one in five of its patients.
The firm, which sees roughly 4,000 women a month all seeking treatment for the menopause, is led by Dr Louise Newson, a GP and high-profile advocate of high-dose prescribing.
She insists that vulnerable women who are struggling with mental health problems and suicidal thoughts may need double the licensed amount of oestrogen, and that her approach is not risky. However other concerned specialists disagree.
Following our article, the British Menopause Society (BMS), the Royal College of General Practitioners, the Royal College of Obstetricians and Gynaecologists and others all signed a joint alert, warning that oestrogen HRT should not be prescribed in doses higher than the licensed limits ‘to ensure patient safety’.
If, in exceptional circumstances, a higher dose is deemed necessary then ‘patients must be made aware that treatment falls outside of reassuring safety evidence,’ it added.
Despite this, the situation regarding high doses was described last week as ‘out of control’ by sexual and reproductive health specialist Dr Paula Briggs, who is chairwoman of the BMS. She said: ‘In the 30 years I’ve been treating menopausal women, I’ve never known anything like this.’
Consultant gynaecologist Michael Savvas says that in rare cases women may need higher doses if they don’t absorb enough oestrogen through the skin.
She adds: ‘We do see patients who find they feel great for a while, then find some symptoms return – things like mood changes and sleeplessness. They decide themselves to increase the dose without consulting a doctor, in an attempt to feel better again.
‘People absorb different amounts of HRT through the skin, which can be an issue. If a woman isn’t responding to standard HRT doses, it’s important to do blood tests to check oestrogen levels. If they are lower than we’d expect, we might increase the dose.
‘In extreme cases, we’d prescribe five squirts of HRT gel, rather than four, which is the licensed maximum. It’s very unusual to give more. Before this, we’d probably look at switching to a different form of HRT, as higher doses cause more side effects.’
Dr Morton agrees: ‘We know some women don’t absorb oestrogen well though patches or gel, but increasing the dose is pointless – we need to find a different method of delivery.
‘And many of these women on high doses, when we test them, have extremely high levels of oestrogen. I believe this over-treatment exacerbates symptoms.’
Blood tests measure levels of oestradiol, one of the four main types of oestrogen in a woman’s body. A woman of child-bearing age will generally have an oestrogen level of up to 1,300 pmol/L, while post-menopausal women usually have below 200 pmol/L.
While there is no set consensus on an ideal level for a woman on HRT, anything above 700 is generally considered too high.
On social media, patients compare notes on blood test results. One woman writes: ‘Got my blood test results. Pre-HRT I was 170. Now it’s over 1,000 on three 100mcg patches twice a week [three times the licensed maximum dose].’
Another writes: ‘I was put on four patches [four times the maximum licensed dose]. I am full of anxiety and have no motivation. My bloods are 1,600, so I am absorbing.’
Mr Savvas says: ‘Some women feel very well with an oestradiol level of 150, while others still have symptoms with levels of 400. If levels are in the mid-hundreds, which should be sufficient, and she’s still suffering symptoms, there is no point giving higher doses.
‘Usually it’s psychological symptoms and we would explore whether there are other things going on that could be the cause.
‘It’s not good medicine to just think all problems a woman has can be solved with HRT.’
He adds: ‘The most important thing is that women are properly assessed by a doctor before any dose adjustment is made.’
Birmingham-based consultant gynaecologist Lynne Robinson says: ‘We’ve been seeing more and more women on very high doses of HRT.
‘They come in for a second opinion, usually because their GP has said they won’t prescribe a higher dose and the patient wants us to. Often they are anxious and irritable and think they need higher doses.
‘When we test them, their blood oestradiol levels are often in the thousands. They might be suffering palpitations and headaches. This is a totally new phenomenon and I think it’s partly driven by messages in the media that make people think more HRT is better.
‘Normally, if we very gradually bring their dose down so they don’t “crash”, and add perhaps anti-depressants, things do improve.’