What to do when NHS consultant gives bad information?

[Charlock]

Hi,

46, peri, 300mcg patch due to poor absorption prescribed privately, Mirena, T gel.

At a recent NHS appointment I was told that a 100mcg patch shuts down ovarian function. I was aware that at a certain point ovulation can be suppressed by transdermal estradiol BUT not that the ovaries are switched off completely. I pressed the consultant on this, asking if what she was telling me was that I was effectively like a post-meno woman on my current dose, and she said yes.

I've been researching this and this appears not to be the case. A patch may prevent ovulation by flattening the cycle changes that trigger ovulation but the ovaries still produce endogenous estradiol until menopause. If what my consultant said was true then why would anyone need GNrH analogues and add back estradiol?

She also told me I'm at risk of endometrial cancer (I understand there is uncertainty around endometrial protection due to lack of research - but I also know I dont absorb well) and also breast cancer and VTE. VTE is only really a risk with oral preparations as I understand it due to first pass, with transdermal preparations being insignificant.

I understand the narrow parameters of the NHS provision and lack of research means hands are tied but I do object to being given incorrect information which means my blood tests are dismissed as a result. Unless anyone can tell me otherwise?

But what can I do? There feels like there is no comeback, they can say what they want.

Can you say why you are combining private prescribing with NHS follow up?
Why did you need an NHS appt anyway?

300mcg patch is a very high dose and the BMS stated recently that there should be very few if any women needing to go above the highest licensed dose (100mcg.)

The Mirena will give you a lot of protection and it's also used for hyperplasia, so the suggestion you could get cancer is a bit ludicrous.

Why are you using the NHS now and not whoever prescribed your HRT?

Thanks @JinglingSpringbells

GP referred me '21 as I had no response to 4 pumps of gel. The wait time was long and I'd been on my knees for 8 months after horrendous AD experience then figuring out was peri. My plan was to go private until NHS could take over but I've found myself in a difficult situation of being someone who doesn't absorb well so the NHS have no pathway for me. The NHS have given me majority of prescription but thanks to the BMS warnings seem to be really clamping down. I've been trying, sifting through research, providing blood test results, writing letters, evoking shared decision making guidelines etc to have my care taken fully by NHS but to no avail. This appointment was my last ditch attempt to have my regime sanctioned by NHS specialist so GP could prescribe.

It's a really difficult situation to be in where the BMS say it's rare for a woman to require a higher than 100mcg dose, yet on forums there is a significant minority who do in fact require more. But the lack of research and things like the Daily Mail fanning the flames of fear have led to doubling down I believe. I tested 278pmol/L on a 175 patch, some of which would be my own oestrogen so I'm not concerned that I'm on this so-called high dose. What goes in is much less, perhaps even half of what another woman might absorb. Plus, on balance, the very real threat to my mental health of not being on this regime far outweighs any of the other potential risks to me.

I feel let down and angry that I've been given what I feel to be miskeading information by a specialist regarding my own oestrogen production and risk of VTE on transdermal and I'm frustrated that there seems to be no route to remedy it. I feel like writing her a letter citing the evidence (or lack thereof) and saying how disappointed I am. It seems it's much easier to vilify specialists who understand (quite reasonably) that some women need a higher dose than to look where the failings are in NHS women's reproductive healthcare and lack of research. I'm tired, been fighting it for 2 years. I am really well on this regime and just want to get on with my life.

This sounds awful- poor you!

Is it possible that whoever you see / saw privately can write to the GP/NHS with the recommendations of what you need? if necessary have another appt with them so they can update your GP?

It would be very unusual for a GP to refuse a specialist's advice.

(If I'm understanding your posts- sorry if not.)

The private specialist should be the one pushing your case and providing the evidence of blood tests etc.

if this doesn't work, your only other option is to have all your HRT privately if you can afford that (and I appreciate you might not be able to.)

Thanks @JinglingSpringbells

I'm with Newson Health and they provide detailed consultation letters but GPs won't follow their advice. Because we have an NHS meno clinic in my area, the GPs will only listen to them, hence why I've been trying to convince them to take me on. Blood tests have been done by NHS ...

I cannot win because as I said above, where I felt my blood tests showed poor absorption they now they are saying that as my oestrogen production has been switched off by my dose my blood tests are all HRT and contain none of my own oestrogen. I know this not true, I have done my research, and I know plenty of women on similarly high doses whose blood tests vary wildly clearly showing their own oestrogen production is alive, well and all over the place.

The point is ... what do you do if you feel you've been given bad information and this has influenced a clinical decision? I am in a position where if they prescribe 100mcg I could afford to buy the rest but it's wrong on principle and those who can't afford it are screwed.

I wish I responded to within licensed dose,my life would be so much easier. It's soul destroying not being believed too.

I can fully understand your frustration.

TBH if they won't listen to Newson, I think they aren't going to listen to you, a non-medical person, trying to tell them what to do (that's how they will see it.)
You can't win this that way.

Have you asked why they won't do what Newson H says? I wonder if it's because all the drs there are GPs and not consultants? (If you can find one on the team who is, that might swing it.)

Being pragmatic, to get some resolution, I'd suggest you see another specialist- a menopause gynaecologist who is very well regarded nationally - and ask them to assess things and write to your GP.

The only other thing I can think of is you email Dr Heather Currie, who was given an MBE for services to menopause a couple of years ago. She runs Menopause Matters website. She is an NHS consultant gynae in Scotland . She offers an email Q&A service via her website for around £35. That fee is put back into the website. I know of women who have emailed her and taken her response to their GPs. No guarantee she would suggest what you want to do with the dose, but it's something to think about if you can't get to a consultant (although some will do video consultations.)

They are incredibly uncomfortable going outside the guidelines. I can understand this, given how the BMS issued a statement reminding prescribers they are responsible if anything goes wrong. There is just so much fear around all this. To my mind Newson is at the leading edge of menopause work but the attitude towards her by the NHS I've experienced from has been nothing but negative. Strange.

Honestly, I think if I saw Nick Panay himself they wouldn't even follow his advice.

I'm actually in Scotland and my consultant doubtless knows Heather Currie so it could be a tad awkward. I suppose confidentiality should prevent her disclosing that I had contacted her but I'm not sure I trust in reality it would. I actually don't think anyone in the NHS would give me what I'm on. I am planning to try to reduce as I've switched patch brand and hoping I absorb these better. My issue was really about being told I am like a post meno woman when I am not. And risk of VTE, cancers etc. It makes me angry they would say these things when there isn't good grounds for it. Smacks of fear mongering and makes me not trust them.

If you want to confront them, your only way to do it is by printing off the relevant research and taking it to an appointment.

I think any negative attitudes to LN are possibly because they see her as a 'threat' because a lot of the women's health treatment is very patriarchal and about women being told what they can and can't have without indivudualisation.

I don't necessarily think that LN is at the forefront, as my consultant was doing what she did , and more, 20 years ago (and she rates them very highly) but she's got a huge PR machinery behind her to promote what she does (not a criticism, just a fact.)

Has anyone suggested an implant to you for the estrogen?

@JinglingSpringbells I don't have another appointment with NHS specialist. Plus, I sent her a letter prior to my last appointment with all my arguments for poor absorption laid out. As I said, she has disregarded them and said my ovaries are shut down now and this is the point I disagree with her on, and where the research on this isn't altogether robust (Cochrane review states this). My Newson doctor agrees. There is a Scottish version of PALS which I can use to complain. I don't particularly want to do that, I already feel like the patient that they eye roll over.

I agree with you on attitude to LN work being related to power, ego, patriarchy and paternalism ... I would be completely fine with the consultant saying my hands are tied due to NHS guidelines but it's the use of bad information to justify their position which sets my justice complex off. It particularly bothers me because this consultant is female and supposedly very supportive of women. I guess these ways of being in the NHS are incredibly ingrained.

Also, I don't mean to say LN is the only one doing what she does ... I realise there are are other outliers who have been working in this way too. But she is the one who has garnered the publicity somehow and got it out there in the mainstream. And thank goodness for that.

No, implants have never been mentioned as an option and I believe this comes down to the fact that my absorption issues are not being acknowledged by the consultant. I personally wouldn't want them given I can be well on transdermal - if I get the right amount for me. She's reading my blood results as being all HRT and seems obsessed with my levels being no more than 450pmol/L consistently - which, if I was post meno, may be possible. However, as I'm peri and 46 and, I believe, still producing varying amounts of my own oestrogen, this would be impossible. I also disagree that ALL women don't need a blood level of more than that to be well. How anyone can say that with any authority with the lack of research that exists is ridiculous.

I know you've helped loads of women on here and I appreciate you replying. Can I ask - do you think this is worth me pursuing or do I walk away, accept that I have to keep going private because the NHS is clinging to bad information that justifies them not believing/helping me and get on with life? Obv only I can answer that. Hard to know when to give up the fight. I hate that other women with less resources than me are left to suffer. It isn't right. And if folk like Carolyn Harris and Diane Danzebrink took this attitude prescription charges would remain how they were in England and meno still wouldn't be mentioned in education.

Can I ask - do you think this is worth me pursuing or do I walk away, accept that I have to keep going private because the NHS is clinging to bad information that justifies them not believing/helping me and get on with life?

If you carried on with the fight, how would that pan out?
Would it mean sorting another appt and taking the dr on with more discussions?

I'm assuming you have tried estrogen gel or the spray and not just patches?
TBH it would be almost impossible to use gel if you need 300mgs as that's 12 pumps a day. (4 pumps = 100mcg patch.) You'd get around 5 days from the bottle and the RRP privately is around £12 (and that is for a month using 2 pumps a day.) No idea how this compares with the cost of patches.

And I assume you've tried tablets ?

If you carried on with the fight, how would that pan out?

Well I've asked myself that. I doubt it would lead to me getting my prescription okayed. But it may highlight the fact that bad information is being used and make them think twice about what they tell women. Perhaps it may make them consider having a pathway for women who don't absorb well.

Would it mean sorting another appt and taking the dr on with more discussions?

• *No. I feel I've gone as far as I can trying to convince them. It would need to be through PASS.

I tried gel 4 pumps gel and had no response hence going to patches. I switched from Estradot to Evorel a couple of months ago so I'm going to try reducing to see if I can get away with less. Very scary as hormone drops can take me to a very dark place quite quickly. I wish we lived in a world where individualised care really was that instead of being made to feel like a freak/liar that I need more than 100mcg to feel well. I suffer from migraine with aura so oral contraindicated.

I wish we lived in a world where individualised care really was that instead of being made to feel like a freak/liar that I need more than 100mcg to feel well. I suffer from migraine with aura so oral contraindicated.

IF and it's a big IF I know, you can afford private meno care, I'd just stick with that. I completely 'get' the sense of injustice, but maybe it's not worth the emotional energy on all of this.

Obviously there are other doctors not just the LN team and someone else may have some better suggestions if that's necessary.

It's all such conflicting information....
I went to see one of Nick Panays consultants in Harley Street. I was 54, had been using HRT for about 4 years, I was on a 75mcg patch prescribed by my GP. At the clinic they did blood tests to see where my levels were prior to prescribing, when the results came back and my estrogen levels were 756, I was told that was approaching dangerously high, so my patch dosage had to be reduced as clearly my own ovaries were still working and adding to my estrogen results. Never was I told that the estrogen patches would override my own ovaries and stop them producing, quite the contrary.

@JinglingSpringbells you're probably right. I can afford an annual consultation and the £20 odd per month needed to top up my NHS prescription.

@Rina66 that's curious. I would have thought if you felt well on 75mcg and blood tests showed a level of almost 800pmol/L they would just put it down to your own ovaries contributing and tell you to carry on. Perhaps check again in a few months but not tell you to reduce.