150mcg Evorel with a Mirena OK? worried about high dose now

[WombatCubes]

OK please don’t blame for taking things into my own hands but I was desperate and seeing the discussion about overprescribed oestrogen I am now really worried.
Am I at risk if have had to put myself up to 150 mcg Evorel with a Mirena that’s about 3 and a half years old? I put myself on 150mcg about 5 weeks ago after having been on 100mcg for about six months prior.
On 100 I still had terrible joint pain, flushes, insomnia, anxiety, brain fog after having had Covid. My GP won’t give me more than 100mcg despite me telling him all this. He just said 100 is the limit the NHS will give and doesn’t suggest anything else. I am 46 and the 150 is really helping. Joint pain gone, flushes gone a bit of energy returning and things like pigmentation on my forehead and cheeks disappearing. Should I go immediately back to 100 now, or call my GP and say what I am doing, or do I need to ask for more progesterone? I really don’t want to go back down to 100 anytime soon unless I have to. Although I will run out of surplus 75 patches soon so I know this is not sustainable if my GP won’t prescribe more. Where I am there’s no specialist menopause clinic at the hospital, I have asked. WWYD?

I would talk to the GP some breast cancers are fed with oestrogen. I have had my coil changed and on patches of 100 so far so good. Good luck

I am also wondering, but the advice to talk to my GP is meaningless. My GP is beyond useless with HRT. I am a Newson patient and have been so happy with them.

I am on 200mcg Sandrena with a Mirena, and I feel so good. I feel so much better than I did on 150mcg Sandrena and I didn't like the 100mcg patch because I could feel when it was time to change it and I swim a lot.

We need more information about the data on the risk related to higher oestrogen levels. Where did these limits come from? How good is the data, and are higher levels of transdermal bio-identical oestrogen linked to risk or is the risk based on very old data from oral oestrogen circa 30 years ago? Is is one of these cases where data on 150mcg vs 200 mcg of newer oestrogens just haven't been done, so NICE recommends lower level?

I'm just wary about self medicating

I totally agree about self medicating and would not advocate this for anyone else but I am also really feeling abandoned by my GP, who is not a meno specialist, yet can’t refer me to one, because this NHS limit doesn’t seem to be helping me get rid of symptoms that have been threatening my ability to work.

What else are women supposed to do? I’m going to keep looking for evidence on this online but I really resent having to spend hours trying to read things I only half understand to send to my GP when I just want safe and effective treatment for something that affects 51% of the population.

@WombatCubes I'd not worrry. The Mirena is very effective in controlling the lining. It's actually a treatment in women with hyperplasia (overgrowth of the lining.)

If you started spotting then I'd see your GP and ask for an ultrasound scan.
The Mirena is licensed for 4 years as part of HRT so make sure you get it replaced when it's due.

Also there is evidently no link between the dose of estrogen and breast cancer @maeveiscurious (this is in the medical research papers and statements.)

@PamelaDawes If you are using twice the licensed dose of estrogen, you should double the amount of progesterone (this is the advice from the BMS - over a year ago and more recently.) So if you use Utrogestan, it ought to be 200mgs a day (2 capsules) as a continuous regime. The known risks are hyperplasia (data is there) so I hope the Newson clinic is advising you to increase progesterone (if that's what you use?)

@PamelaDawes If I'm right on this, one sachet of Sandrena is 1mg of estrogen. Not sure why you are using micrograms re. Sandrena?

1 pump of Oestrogel (similar to Sandrena) is 750mcgs and 2 pumps = 1.5gms.

So if you are on 2gms Sandrena that is roughly 3 pumps of Oestrogel (which is a licensed dose. Upper dose is 4 pumps.)

I see you have the Mirena - ignore the stuff I posted about utrogestan :)

This is a really interesting thread. We are similar OP so I hope you’ll forgive me throwing in a question too.

I am about to ask to go to 100 mg evoerel patch (have also recently upped myself w cut down patch to augment 75 mg patch) but as per above have been told 100 is the limit on NHS. Should it be needed for symptom relief Is it possible to get more than 100 mg patch where helpful? Is that accessible privately? I also have mirina for womb protection.

but as per above have been told 100 is the limit on NHS. Should it be needed for symptom relief Is it possible to get more than 100 mg patch where helpful? Is that accessible privately

Are you by any chance confusing 'limit on the NHS' with ' maximum licensed dose'?

Where have you seen the 'NHS limit'? (Just asking as I've not read that.)

A GP can prescribe off-label if they think it's necessary and they are willing to shoulder the responsibility.

Yes I am sure you could get a higher dose privately, but that would not be just about it being 'private' but with a consultant having more knowledge and experience.

My HRT has been at an off-label dose for years, but it's within the bounds of what my (private) consultant considers safe and there is a back-up plan of access to scans regularly.

JinglingSpringBells thank you so much for your reply that is so helpful and reassuring. I feel like an expert has arrived! Sorry to put you in the spot but can I ask you two questions?

1. when I go back to my GP and confess to self medicating is there anything that I can show him to show that the NHS can safely go over the 100 mcg limit so that I can keep these benefits? Or that I can use to challenge the commissioners if that’s where this decision actually lies? I’m already worried about sitting on 100mcg while I argue these points which could take months even if I am successful which feels unlikely given no clinical higher authority than my GP exists in my area..

2. do I request the next change of Mirena as contraceptive or HRT? I read somewhere the NHS won’t offer them solely as HRT? I’m 46 if that matters. I don’t want to go in and ask for the wrong thing. I can’t afford to go private for the foreseeable.

oh and 3. Can I ask the NHS to scan me regularly if they don’t offer off label use of oestrogen?

Hello again and thank you, you’re right I am probably getting confused because I read of women with private drs being much more flexible about their oestrogen dosage according to symptoms.
TBF my GP said not ‘the NHS limit’ but when I asked for it to be raised he said I quote ‘The maximum dose is 100mcg and I cannot recommend that you exceed this.’
As my GP is the arbiter though and there is no specialist meno clinic to be referred to (I have asked) that effectively ‘is’ the NHS limit for me though it seems unfortunately.
I want to check the wording on local commissioning guidance for my area to see if that could reassure my GP that he could be more flexible but with all the changes to ICS I’m not sure where to start.

Hi just to but in with regards to the mirena for HRT alone....yes you can I have it solely for HRT, I am 54 and use for that purpose ... in fact many GPs and gynaecologists push the mirena over utogestan because it's no maintenance and far cheaper.

You are right that it's not impossible to go above 100mcgs.
I'm afraid that I don't know anything about local commissioning guidance but I do know what the British Menopause Society wrote last week when this topic hit the press.

[[https://thebms.org.uk/2023/04/joint-bms-fsrh-rcgp-rcog-sfe-and-rcn-womens-health-forum-safety-alert/

The important wording is this...
Oestrogen should not be regularly prescribed in doses higher than the upper limit listed in the individual Summary of Product Characteristics (SmPC) as these limits are informed by the results of clinical trials, to ensure patient safety. If in exceptional circumstances a higher than licensed dose is deemed necessary for symptom control, informed consent should be obtained according to good medical practice guidance and patients must be made aware that treatment falls outside of reassuring safety evidence.

Basically, women can have higher doses if absolutely necessary but they need to be aware of any possible risks and agree to take those risks.

I don't know your HRT history of course, but it may be worth thinking about swapping to gel which can be up to 4 pumps a day= 3mgs. You may find it suits you better and is the equivalent roughly of a 100mcg patch.

I doubt the NHS would do regular scans simply on cost and availability, unless you had symptoms, but you can pay for these privately with/without a GP referral.

Thank you for the BMS link and quote that’s very helpful. In fact I switched to patches from gel a few months ago mostly because over the autumn and winter in a freezing flat rubbing in 4 pumps in nightly was miserable.

I haven’t noticed any difference in the effectiveness of using 4 pumps gel versus 100mcg patches (neither seemed to help enough) but I really do appreciate the relative convenience of using the patches.

I need to work out a good solvent for the Evorel residue on my skin but that’s a problem I will happily live with

Baby oil