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[CLKD]

I was never told if my breast lump - non sinister until it got to histology - was reactive to hormones, simply as I was discharged from oncology the Consultant muttered "No HRT for you young lady".  I had no idea that breast disease might be hormone charged.  I don't suppose my slides would be still available ......... I wasn't allowed to see them after surgery either.  Which annoyed me 

The Change does what it says on the tin.  Alters how our bodies work, each 1 individually.  Which is why it may be difficult to find a regime as well as a care provider, to offer up the regime willingly. 

My paternal gran had a lump removed from her chest in about 1969 which we thought via the Aunty grapevine was a TB Tubercle, again nowt was said - it simply wasn't talked about.  Not something that I have worried about but any information shared can increase over-all knowledge in any sphere.

westie - keep posting!

[dangermouse]

The one size fits all is referring to the Utrogestan (which doesn't actually fit anyone as it wasn't designed for use as HRT).

Hopefully the NHS will offer more flexible doses of natural progesterone soon.

[Mary G]

I made it quite clear in my post further up that my regime works for me but will not necessarily work for everyone.   No HRT regime works for everyone like Utrogestan or a long cycle for example.

I don't think westie should feel uncomfortable about seeking help privately.   If someone is opposed to private health care on ideological grounds that is fine, but does that mean nobody can ever discuss the private health sector?   

I agree with dangermouse, if this is a free and open forum, all types of HRT should be freely debated.   If indeed there is a problem with members discussing private menopause clinics and their HRT regimes, then there should be a directive from one moderators setting out forum protocol ie only NHS clinics and HRT regime may be discussed.   I don't think this is a decision for individual members.

Nobody should be made to feel uncomfortable if they are happy on a standard HRT regime, I wish I could have a standard regime but that has not been possible.  Equally, I feel this should be an open forum and all individual experiences should have equal value be they NHS or private.

[westie]

Morning everyone

For what it's worth I have really appreciated the feedback I have had from everyone who has kindly responded to my post.

In an ideal world of course we would all like to have the treatment we need on the NHS but, as in my case and in many others I am sure,there are often very long waiting lists to see an expert on these matters and ,  I cannot waste my life feeling so rubbish so will consider other options in my quest to feel better.

It is also good to hear the variety of ways that others have found a solution. I think it is all about being informed by gathering information from others who have struggled. I agree it is important to ensure the safety of what we chose to use but I still think this forum should be able to discuss the many options available.

Thanks again everyone I shall report back later in the week.

W xx

[CLKD]

In an ideal World we would sail through menopause    ..........

Let us know how you get on westie.  Good Luck!

[Hurdity]

Dangermouse ? I've just said that Utrogestan is not necessarily prescribed as one size fits all ? there are various different regimes which can be prescribed off-licence even on NHS provided women are monitored. What we do need is greater official flexibility and licensing to enable these regimes to be more widely available (even with the limited trial information we already have).  The problem with progesterone is not especially Utrogestan ? it's nothing to do with what it was designed for ? it comes in two doses and like I said the lowest doses (100 mg and 200 mg) are for menopausal women not fertility (600 mg). There are also other (unlicensed) progesterone formulations -  but they allo have the same problem - large doses needed due to the properties of progesterone itself). The problem is as we have discussed many times before ? is that progesterone is unstable in the body and has to be given in large doses in order for sufficient to reach the endometrium (and also that there should be trials on lower dose formulations or even modes of delivery). This is why synthetic progestogens were developed and are more effective ? however many prefer only to take the bio- = body-identical preparation. HRT is but a crude way to mimic ovarian production of progesterone during the menstrual cycle which pumps it out in small pulses. Even if we did have a slow release product available I still wouldn't want to have anything pumping extra progesterone into my body all the time ? not without long term trials showing it is low risk.

Mary G ? westie has spoken for herself and values all our contributions. What I and others try to encourage is for women to pursue the regime and help they are seeking through existing channels to obviate the need to seek private treatment. Of course I understand what westie is doing and I have wished her well. However she is being driven to use expensive private treatment that should be offered through menopause clinics on NHS, due to ignorance on the part of her docs  ? this is what we all hope should be available. The Newson clinic will likely offer an individualised treatment based on westie's circumstances using existing products.

Of course it's a free and open forum and no-one has said anything about what can or cannot be discussed and no-one is criticising you Mary G or westie. However don't be surprised at strong views being expressed about your treatment, especially when the treatment that works for you Mary G (and as I've already said I am pleased for you) is not only non-standard re the products and lacking proper evidence as to efficacy, but also beyond the reach of most women (financially and practically due to distance) so although interesting is of limited help in that only the privileged few who can afford it can try it (and be monitored).

Like I said the information on this site is based on scientific and medical evidence so it's not surprising that there are members on here who strongly argue from this point of view. Only this morning I got the weekly MM newsletter in my inbox which says in the first paragraph: ?Our aim is for all women, approaching and experiencing the menopause, to have clarity over the different treatment options available, based on sound, clinical evidence, meaning you can make up your own mind about what is the best option for you.?

Westie ? hopefully once you have been to the clinic you can ask the doctor to write to your GP recommending whatever regime you are prescribed so that you continue the treatment you need without extra expense?

Hurdity x

[CLKD]

What's the real problem here  ............ surely all experiences are valued, regardless of which part of the World they originate from?  Surely it isn't necessary to keep repeating, repeating, repeating?  Most Members are quite capable of reading experiences and working out what might be appropriate/not ..........

It is absolutely fine if the NHS won't listen to patients - what ever the complaint might be - to make the choice of paying for advice.  It shouldn't be necessary to need to see a Consultant: private or otherwise: to get the necessary prescription : advice should be offered by a GP who are there to prescribe, not to judge   .......... but it does seem that the message isn't getting through or this Forum wouldn't be necessary.

Regardless of what MM newsletter suggests [I haven't read mine yet] GPs are not giving clarity.  Patients shouldn't have to research any evidence, that's what Practitioners are paid to do.   

[dangermouse]

All of the private doctors will write to the patients GP to let them know what they have prescribed so that those medications available on the NHS can be prescribed by the GP.

When I last saw my specialist who is a BMA endocrinologist (London Hormone Clinic) she actually had on her desk Estrogel, Estradot patches, Utrogestan, along with lozenges and creams. They will try to use the products you can get on an NHS prescription first but the others are there if needed. They come from a compounded pharmacy in Northumberland so you get by post if you don't live close to Northumberland.

I was actually advised then that hormones may not help my current issues as, although hormone imbalance makes it worse, they believed it was not the cause of something I'm dealing with so I thought that was very honest of them.

Hurdity, I think the timed release option which was not from a UK compounding pharmacy (I found it googling) seems to be the same amount you'd have in one hit mixed with something that makes it slowly release into your system. So more like the Mirena coil or an implant.

[CLKD]

    dangermouse 

[westie]

Hello again

Thought i'd report back following my appointment at Newson Clinic on Wednesday.

We discussed my apparent intolerance of utogestan and the possibility of doing a longer cycle ( 6/8 weeks) with an annual scan to check womb lining. However, she also did a blood test to see if my oestrogen levels were up from last time (198) bearing in mind I have increased my gel to 3 pumps daily for last six months. Have just got blood results today and my oestrogen levels have actually dropped , now at 108!

 So am guessing that my extreme reaction to the utogestan could be that 8 have barely enough oestrogen to balance it.

Luckily during the appointment we did discuss the possibility of insufficient oestrogen to balance the progesterone and she changed my prescription from gel to patch ( Estradot now back in stock). Am glad we agreed that as I am now about to stick my first patch on in the sincere hope that I absorb better . Let's hope so!

Am going with the patch only for 6 weeks than will add the utro and see how I react.

This HRT journey is by no means straight forward is it?



W xx

[CLKD]

It's The Change - does what it says on the tin   

Tnx for the update!

[Mary G]

westie, thanks for the update and I'm glad the appointment went well.

Assuming this is pmol, that oestrogen level is very low for three pumps of gel and that is why blood tests are so important, you really do need to know how well you are absorbing oestrogen.

The variation from person to person is huge because I'm consistently getting levels of 271-300 pmol with just one pump of gel but I had very low blood levels with patches.

Perhaps you are not progesterone intolerant at all and you just have a hormone imbalance?   Hopefully you will absorb the patches well and start to see an improvement quite quickly.   

Good luck and keep us posted.

[westie]

Mary g

Yes I agree it is important to get blood tests... it seems that the past 9 months in my case have been a bit of a waste in terms of oestrogen absorption and you?re right maybe I am not intolerant to progesterone just need to get some balance.

Really hope the patches work.., if they don't I'm giving up!

W xx

[Wrensong]

Hi Westie, having just seen this thread for the first time tonight I've just read all 4 pages  (backwards(!!) as I got engrossed from the latest page).  As someone who's had to give up on the "gold standard" Utrogestan after 4 trials (both oral & vaginal administration) proved it to be very much something my body hates & who still hasn't found the right HRT fit after nearly 3 years of trying with a long break in the middle, I understand your desperation.

Though not well off & currently not in paid employment, I've had help from both NHS & private healthcare providers & save for the latter, foregoing other things, as with more than one chronic health condition I really need as much help as I can get to get on top of the situation in order to have a life & don't want to waste more precious time waiting & hoping the NHS will eventually somehow be able to provide everything I need. 

Whilst I believe in an ideal world we should be able to get the best healthcare from all specialties in a timely manner through the public system, this has become increasingly difficult with the growing burden on the NHS.  I say that with a heavy heart as the NHS has been my only employer in the last 30 years & I'm passionate about it.  So I say to anyone who feels they need for whatever reason to look outside the NHS for help, please do so - nothing is more precious than our health & if we can afford it, we are reducing the burden on the public sector for those who simply can't afford to go elsewhere.

I've also had to resort to a non-standard regimen, so completely understand why others do so & applaud the sharing of information & experience that may just broaden others' options.  I likewise value the cautions expressed by those better equipped than me to interpret relevant scientific data.

So thank you to everyone who's contributed so thoughtfully & passionately to this thread.  Wow ladies - what a lively, intelligent, caring & informative debate.  Fab forum, fab contributors.

As a past Newson patient currently still juggling both NHS & private care from more than one specialty, I wish you all the very best with the next step Westie.  Please do let us all know how you get on.

[westie]

Thanks so much Wrensong for your post.

Yes it has been a lively and thought provoking thread hasn't it's? But it just goes to show that there isn't a one size fits all when it comes to HRT and we are all so different in the way we react to the varying types. I have really appreciated all the different views expressed, after all knowledge is power as they say.

I am very disappointed that that my current regime hasn't worked for me as well as it should but am determined to persevere, life is short and I want to get the most out of however many years I have remaining.

The help and support from from 'the sisterhood? on here has been invaluable to me and I hope to others too.

Thanks again everyone, i?ll Let you know how it goes

W xx