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[Miranda_lady]

Hi, My private specialist is happy to prescribe above licence doses as this alleviates my symptoms, but NHS are not. I've had incredibly mixed opinions and some say there is a risk of cancers , but some references say there is not. Is anyone on high doses of oestrogen?

[Mary G]

I would go with the advice of the private specialist 100%.

The NHS are extremely conservative when it comes to HRT and they prescribe the barest minimum oestrogen dose and they are reluctant to prescribe testosterone.

They over prescribe progesterone too and this is because they don't monitor women with regular uterine scans. Basically they worked out how much progesterone women need to keep the womb lining thin and then doubled it as a catch all but it means most women are taking far too much progesterone and often destroying their HRT regime and wiping out the benefits of oestrogen.

The NHS really isn't great when it comes to HRT and the menopause.

[Miranda_lady]

Thank you so much for your reply. I understand that GPs have prescribing limitations. I didn't know about the progesterone over prescribing though! I've had to increase my progesterone to 300mg cycally and this seems to counteract the oestrogen effects! After a year's wait I had a video consultation with an NHS menopause consultant and he said it was crazy about the dose of oestrogen I was taking and I should be concerned about breast cancer. However, private specialists are saying he is incorrect! It's so tricky navigating. I've tried to do research and an happy that the licenced doses are safe, but there doesn't seem to be much research on over 100mcg oestrogen. Thanks again for your reply

[sheila99]

I agree with Mary. Also, the NHS don't test the level on your blood. Depending how you absorb you can put a lot on your skin and still have little in your blood. Imo cost control is more important to the NHS than adequate doses to control symptoms.

[bombsh3ll]

There is no evidence of a dose response relationship between estradiol and breast cancer.

Estradiol alone is actually protective against breast cancer, it is the progestogen component that is responsible for the small increase in breast cancer risk with combined HRT.

Additionally we should think about the amount absorbed, which can vary up to tenfold between individuals.

Even if you assume the worst case scenario and  believe estrogen poses harm, who is at greater risk, the woman on 50mcg patches with a plasma level of 1000pmol/L or the woman on 300mcg in patches with a plasma level of 400pmol/L?

Drs Newson and Glynne recently published a really good paper on this which you can search up and read, no pay wall.

[Furyan]

I recently switched private prescribers and I got the impression they are open to me taking above a 100 patch if needed. As it is, I recently changed progesterone types and quickly found I got much relief by increasing my oestrogen dose by adding a pump of Estrogel. In truth, I have room for more and I’m going to discuss this at my next appointment because, like you, I’ve heard from the NHS and ‘oestrogen dominance’ forums that I will have an increased cancer risk from taking anything above 100 patch.

That said, it’s encouraging to come here and see that some ladies are taking substantially more oestrogen than I am with positive effects on symptom control. I also read that a few women my age need to increase their oestrogen by quite a bit before reducing it again closer to 60. Dunno how widespread that need is though…

[Miranda_lady]

Thank you so much for your replies. I really appreciate talking to you all. My private specialist checked my oestrogen levels and they were high end. She said this was fine as I was peri and would be spiking and reducing which is why one can get symptoms, but that I'm absorbing. My testosterone was very low, so I'm on that now and it's made a world of difference to energy, libido, clarity. I'm listening to Estrogen matters on Spotify ( audio book) and it's pro oestrogen and reports it doesn't cause breast cancers. I just struggle to comprehend how a NHS specialist consultant can not have the correct information! I did have a cervical polyp ( removed on NHS) and the doctor said likely oestrogen fed, but still private specialist not concerned ( she also works in gynae NHS) I've had a knee jerk reaction and reduced by one pump as I'm so worried about the NHS opinion. Scans under private are so expensive. The specialist did also suggest the mirena coil, but I'm petrified of synthetic progesteron as I couldn't take contraception as it really affected my mental health. I understand that this is gold standard for keeping the endometrial lining thin though, so I'm considering this.

[Miranda_lady]

There is no evidence of a dose response relationship between estradiol and breast cancer.

Estradiol alone is actually protective against breast cancer, it is the progestogen component that is responsible for the small increase in breast cancer risk with combined HRT.

Additionally we should think about the amount absorbed, which can vary up to tenfold between individuals.

Even if you assume the worst case scenario and  believe estrogen poses harm, who is at greater risk, the woman on 50mcg patches with a plasma level of 1000pmol/L or the woman on 300mcg in patches with a plasma level of 400pmol/L?

Drs Newson and Glynne recently published a really good paper on this which you can search up and read, no pay wall.

I've read the Newson & Glynne paper on oestrogen dosing and effect on endometrial lining and it's really reassuring.

[Mary G]

Picking up on what Sheila said about blood tests, the NHS put out the line that hormone blood tests are worthless.  There is some truth in this pre menopause when hormones can fluctuate wildly but there is no truth in it post menopause when women are using HRT and need to know how well they are absorbing HRT products.

I think it's time for the NHS to be honest and if they can't afford to fund anything other than the most basic bog standard HRT at low doses, they should come out and say so.

[bombsh3ll]

Also what you have to bear in mind is that the NHS as a state funded system is designed to provide basic level care to the masses for the lowest expenditure.

Guidelines developed within such a framework focus on population level outcomes and cost is a strong consideration. They are not about providing optimal care at the level of the individual.

The NHS simply doesn't have the resources to provide either the necessary training, clinician-hours or the treatment itself to adequately meet the needs of every peri/menopausal woman.

Using universally low dose estrogen and heavy handed doses of progestogen works out best for the system as it avoids the need for any monitoring, minimises bleeding related consultations and investigation, and stops most women complaining of hot flushes, keeps them economically productive and their vaginas in a usable condition for men, outcomes which are considered the ceiling in terms of therapeutic objectives.

[Hurdity]

Hi Miranda-lady

 

Just to emphasise that if you are peri-menopausal then as Mary G says as well as your specialist - your oestrogen levels will be fluctuating and are likely to be very high around ovulation irrespective of the oestrogen dose you are using.

So I'm not clear what oestrogen dose  and delivery method are you are taking/using - are you saying you are on higher than 100 mcg or are hoping to do so?  If so what specifically are you hoping to achieve ie what symptoms do you want to alleviate? As you've already been told, during peri-menopause the fluctuations will add to your symptom burden though the added oestrogen is designed to cushion the blow from the oestrogen crashes. I'm also confused because you mentioned decreasing by one pump (ie gel) and then also you mention 100 mcg which is from patches?? Can you clarify please?

Also when you say you've had to take 300 mg progesterone - is this due to bleeding problems or simply due to the high oestrogen dose? Again it's tricky if you are peri. Can you tell us how long you've been on HRT and what your periods were doing in the months leading up to starting HRT - if you had them - this will give an indication of where you are in menopause.

Finally re scans. Ideally of course they should be available on NHS but they are not expensive (relatively speaking - though I realise not affordable for some). Yes they willl be if you have them done through your private specialist, but you don't need to. There is an organisation called "ultrasound direct" (easily found by googling) that will do basic scans very cheaply (and also do other investigations for menopausal women - which cost more) - started off for pre-natal baby scans.

They do a basic endometrial scan which is actually for fertility but I assume you can ask for this even if not for fertility - the website seems to have changed since I last had one. These are £90 but they do a post-menopausal scan which looks at other things which is a post-menpausal pelvic scan and that is expensive - it's £195. I don't like talking about pricing stuff because I realise it's out of reach of many but as you mentioned scans, thought I would say you don't have to pay a fortune....

Glad the testosterone is helping...

Hope this helps also

Hurdity x

[Miranda_lady]

Hi Miranda-lady

 

Just to emphasise that if you are peri-menopausal then as Mary G says as well as your specialist - your oestrogen levels will be fluctuating and are likely to be very high around ovulation irrespective of the oestrogen dose you are using.

So I'm not clear what oestrogen dose  and delivery method are you are taking/using - are you saying you are on higher than 100 mcg or are hoping to do so?  If so what specifically are you hoping to achieve ie what symptoms do you want to alleviate? As you've already been told, during peri-menopause the fluctuations will add to your symptom burden though the added oestrogen is designed to cushion the blow from the oestrogen crashes. I'm also confused because you mentioned decreasing by one pump (ie gel) and then also you mention 100 mcg which is from patches?? Can you clarify please?

Also when you say you've had to take 300 mg progesterone - is this due to bleeding problems or simply due to the high oestrogen dose? Again it's tricky if you are peri. Can you tell us how long you've been on HRT and what your periods were doing in the months leading up to starting HRT - if you had them - this will give an indication of where you are in menopause.

Finally re scans. Ideally of course they should be available on NHS but they are not expensive (relatively speaking - though I realise not affordable for some). Yes they willl be if you have them done through your private specialist, but you don't need to. There is an organisation called "ultrasound direct" (easily found by googling) that will do basic scans very cheaply (and also do other investigations for menopausal women - which cost more) - started off for pre-natal baby scans.

They do a basic endometrial scan which is actually for fertility but I assume you can ask for this even if not for fertility - the website seems to have changed since I last had one. These are £90 but they do a post-menopausal scan which looks at other things which is a post-menpausal pelvic scan and that is expensive - it's £195. I don't like talking about pricing stuff because I realise it's out of reach of many but as you mentioned scans, thought I would say you don't have to pay a fortune....

Glad the testosterone is helping...

Hope this helps also

Hurdity x

Hi, thank you for your very kind and thoughtful post! I'm sorry for delayed reply as I've been working.

I'm going to give a little bit more information.
I started on HRT about 16 months ago. My symptoms at the time were long heavy periods ( about 11 days) shorter cycles, and basically no energy, brain fog and feeling like I couldn't do my job anymore. I wasn't sure if I was ' bad enough' to start HRT but read about all the protective benefits of it especially cardiac as my maternal side have had cardiovascular events in their 60s ( Grandmother died from MI aged 67, and mum had 2 small strokes at 67).
I had a telephone appointment with a pharmacist prescriber at my GP surgery. I told her I was sensitive to the contraceptive pill, so she said to start low. (I now understand so much more than I did then.) I was fine ( didn't really notice much difference) until I hit 3 months. I was prescribed 1 pump ( 25mcg oestrogen) and 200mg body identical progesterone cycally. At 3 months, everything came crashing down! I had panic attacks, had intrusive thoughts- remembering things from my childhood, palpitations, anxiety, fatigue, dizziness, skin crawling. I didn't know what was what and whether I was sensitive to progesterone ( I felt a bit better in the middle of my cycle). I tried to get a GP appointment and was told what for continuity I should speak to the same pharmacist but couldn't get an appointment for 3 weeks. Things started to get worse- I left my home and stayed in a hotel, I felt a bit suicidal ( it was more that I thought my family would be better off without me).
I decided to speak to private specialist ( Newson health - the pharmacist that prescribed my HRT actually gave me links to Newson health for the balance app etc, and this is where I saw that I could get an appointment). I saw a great doctor who said I need to increase the oestrogen slowly in increments of 25mcg to 100mcg and to switch to patches as these give a stable, continuous dose. I had to take some time off work as I was very dizzy and still very low but my symptoms started to dissipate. However, things had not completely alleviated. I was still getting palpitations, anxiety and couldn't stay asleep..I was literally asleep, awake, asleep, awake minutes at a time. At this time, the GP pharmacist instructed me that I now needed to increase the progesterone to 300mg to protect my endometrial lining from the 100 of oestrogen. This seemed to make things worse, and it almost seemed that it was out of balance again with the progesterone and the oestrogen. I was told by private specialist that it was ok to increase the oestrogen again so I used the gel to do this until I was on 150mcg ( 1 x 100mcg patch and 2 pumps gel) initially I felt great, but then symptoms started creeping in again. They have never been as bad as what they were when I was on low dose oestrogen and 200 progesterone, but couldn't sleep, itchy skin , fatigue. I increased again ( private specialist aware) to 200mcg oestrogen and switched to patches, and still found that I needed to add an occasional pump of gel in the evenings which seemed to settle me straight away. Testosterone was added in due to the no libido and continued fatigue. My GP refused to prescribe the HRT above the 100 mcg oestrogen but prescribed the progesterone and the100mcg patch and I have been very grateful for this.
I was surprised when the GP declined to prescribe the higher dose initially, but now realise guidelines etc. They referred me to an NHS menopause specialist and I thought ( obviously naively, that they would agree the higher dose, but they have been shocked by my high dose and said they have never never seen a dose as high as this, and I'm risking breast cancer) basically every single NHS menopause doctor I speak to has scared me and I'm now feeling I'm being negligent with my health. I did get some breakthrough bleeding which I had investigated by the NHS and they removed a polyp ( no bleeding since) however the consultant that removed the polyp told me I was high risk for endometrial cancer and took a biopsy of my endometrial lining - the scan showed normal lining) I still don't have the results 2 months later so I'm chasing those, but I presume they have been lost!!  I appreciate this is a very long post, but I just wanted to try and get the story down and explain why I'm so confused and don't know who to believe. At all stages the private doctor has still been happy with the oestrogen dose xx

[bombsh3ll]

If and when it is me, I will be entirely comfortable taking the dose of estrogen that allows me to not just survive but thrive.

The NHS is driven by rigid, cost focused, population level guidelines.

Have you had blood levels taken on your prescribed dose of estrogen? This may help reassure you that you are not being overtreated.

Additionally you can get a scan periodically to monitor your endometrial lining - this will be my choice rather than blindly taking elephantine doses of progestogen.

[juliaC]

Using universally low dose estrogen and heavy handed doses of progestogen works out best for the system as it avoids the need for any monitoring, minimises bleeding related consultations and investigation, and stops most women complaining of hot flushes, keeps them economically productive and their vaginas in a usable condition for men, outcomes which are considered the ceiling in terms of therapeutic objectives.

This I swear just blazed a new neural pathway through my brain 

[Miranda_lady]

Picking up on what Sheila said about blood tests, the NHS put out the line that hormone blood tests are worthless.  There is some truth in this pre menopause when hormones can fluctuate wildly but there is no truth in it post menopause when women are using HRT and need to know how well they are absorbing HRT products.

I think it's time for the NHS to be honest and if they can't afford to fund anything other than the most basic bog standard HRT at low doses, they should come out and say so.

They have said there is limited research on higher than manufacturers guidelines of oestrogen, but as far as I'm aware there is limited research on increasing the progesterone dosing and this is the part that increases breast cancer risk. I've also read that it's increased again with the mirena as this is synthetic. What has been mentioned about the one higher dose of progesterone to fit all is shocking but not surprising and actually makes a lot of sense. I persevered with the higher dose of progesterone as thought at least I'm protecting my womb lining, and it actually settled. I have been settled in the 225mcg oestrogen and 300 cycally progesterone, but now am really concerned I'm going to cause cancers! When I first started the HRT I developed a breast cyst and then developed the cervical polyp ( both which NHS have resolved for me, but I'm wondering if the HRT has been doing all of this and it's the NHS that needs to sort it out) my private specialist said both could have been lying dormant and hrt can make them worse, but both have now resolved. I guess I'm concerned that I've had a cyst, then a polyp and what's next??
I do actually think the blanket progesterone and limit of oestrogen to all women regardless is happening though.