10 months into HRT and not feeling ‘back to normal’

[ScooperPooper]

Please can anyone suggest new things I could try? I’m 45, peri, Had HRT (two pumps nightly of Oestrogel) these past 10 months. Mirena for progesterone and contraception.

The Oestrogel has been worth it- stopped my hair falling out, stopped the hot flushes and has helped with finger and wrist joint pain a bit. But increasingly I have terrible insomnia, 4-5 hours typical night’s sleep so am tired all the time, joint pain in ankles and knees still keeps me awake. Most of all I’m really struggling with the anxiety and mood swings. It’s off the charts! I worry about everything constantly and am very snappy with my DC and DH who unsurprisingly find me hard work. Relationships are really suffering. Memory massively gone and can barely think straight. I wake with dry eyes and have a dry vulva most of the time. Libido nonexistent obviously.

What shall I do? GP just offers CBT. They’ve refused to give Testosterone due to local prescribing rules. Shall I up the Oestrogel? I feel like I burn though the bottles on 2 pumps daily already, with the regular difficulty in getting more supplies from GP in time. With the National HRT shortage we had, I ended traveling to a whole different city to find a bottle, that feels stressful in itself!

These are very anxiety- provoking times we are all living in, so I’m not asking for any peace of mind magic. But if I can’t sleep, I can’t cope. Nytol etc no longer work.

You are very young still and many women in their 40s need more than 2 pumps. A bottle, using 2 pumps daily, will last you 32 days (there are 64 applications in it.)

Try going up to 3 pumps, or 2 and a bit (just don't press the plunger right down so it gives out slightly less.) See how it goes.

Sounds as if you also need vaginal estrogen too- Ovestin (cream) or Vagifem. You will need to ask your dr for those.

There's loads GP could be offering. Why CBT? They sound ignorant. Either a pill or more pump.

Second ovestin cream for the vulva/vagina, I'm using it for the rest of my life thank you. Upping my oestrogen sorted my flat mood. Testosterone brought back my libido and my oomph but it's up to your GP whether they prescribe it or not. Alternatively you can splash the cash and go to a private menopause clinic who are very likely to give you a more tailored prescription.

It sounds like two pumps is just not enough. Either more pumps or some people combine patches and gel.
i started on one pump and went up to two when I started having breakthrough symptoms again. It’s a trial and error process.
Here it says you can use up to 4 pumps …
www.medicines.org.uk/emc/product/353/smpc#gref

Thank you all so much for taking the trouble to reply, it really means a lot.

My GP seems to be uninterested if the first thing they offer for HRT is not working out well - all they offer is antidepressants which I refused- I’m not depressed! Just in hormonal flux. And so now they’ve offered me CBT.

There’s no NHS specialist menopause service in my whole region (SW England) apparently, so I guess even the GPs who do take an interest are not being trained up by any specialists locally and so the poor patient care will continue. The GP said they aren’t allowed to prescribe Testosterone which seems unfair, given that it’s in the NICE guidance for low libido etc. (as I discovered from this board, which more informative than anywhere else I have looked!)

I’ll up my daily dose to three pumps and see if that works. Should the GP also be offering some kind of blood test to check on hormone levels after a while of being on HRT? I haven’t had any blood tests at any stage of this.

Thank you so much, all of you and I hope that you are managing to sort out your symptoms without too much hassle.

I've recently been private and had my bloods checked etc.

I've been on HRT for 2 years after cancer treatment put me straight into menopause at 41.

I got put on HRT and that was that. Never had any follow up etc.

My sleep is pretty appalling like yours and I had a serious lack of energy and oomph.

My doctor also refused to give me testosterone gel.

I now have it privately and also some extra patches to use alongside my Everol Conti.

Thank you that is great to hear Chesney. Would you recommend anyone in particular to go to? I looked into Louise Newsome clinic online just to see how it worked but it was several months’ wait. I would like to try to save up to go private but at this point I don’t know how long that will take me, so I have been trying to see if my GP could help because I feel so awful, it’s just apart from the Oestrogel it seems like they haven’t really got anything else relevant to offer.

Also, if anyone knows about this stuff- I didn’t ask about periods- I have had none for years because of back to back Mirenas but now I am only having two clear weeks per month without bleeding even with the Mirena, which is only three years old. Periods used to be five days now 7-8 days of bleeding. Is that maybe a sign of low oestrogen, heavier and closer together periods?

@ScooperPooper I doubt you need to pay £300 just to be told to increase your gel. The leaflet inside says you can go up to 4 pumps a day. You can easily do that yourself first and see if it works.

You ought not to be bleeding so often with a Mirena coil. Many women don't bleed at all on it. It works for 4 years as part of HRT. I think this is something you need to discuss with a dr. It's not due to low estrogen- it's low progesterone and it looks as if the Mirena isn't doing it's job.

I have a very good private gynaecologist who I've seen for 15 years, one of the best in the UK, and am happy to share the info by PM. If you are out of their area they do online video appts.

Thank you so much JinglingHellsBells. I will DM.

@ScooperPooper I used Randox for the blood test as they were the cheapest I could find. £50.

Then I used a place called H3 Health as they had appointments that week. Some of the others were months wait.

But before you spend a load of £££ try using extra gel yourself first.

My testosterone level was 0.1 and I do so much sport and I wasn't recovering like I used to. So that was my main reason for trying it.

I also started on a 37.5 patch 9 months ago aged 44 and have slowly had to keep increasing. I'm now on my way to the 100 patch via 82.5 (a split 25 patch added to 75); not sure how that translates to pumps but it's the highest patch nhs give out. On a 75 patch oestrogen were 260 and Gp said she'd prefer over 400 so I'm not even sure if 100 will do it or not.

My joints are still achey at times and my feet can't sustain much pounding at all. Anxiety and meh ness. Zero libido and I have needed ovestin to ease dryness. My plan is to slowly inch to 100 patch over the next 1-2 months and then give the 100 a good 3 months before asking about testosterone. I've just gone to continuous to see if it helps even things out in any way.

It will have been well over a year of faffing by the time I get to a good go at 100 patch and ask about testosterone!

Keep going back and adjusting what you need.

I've just gone up to 6 pumps oestrogel daily. My GP said if that doesn't work, I an go on the 100 (mg?) patch.
I also take vaginal oestrogen and have moisturiser for dry vulva- diprobase- prescribed.
I have had total hysterectomy so don't need progesterone.

2 pumps in a low dose, I'm 48 and was using 6 gel before moving to 100 patch. I also have testosterone.
Try a high strength magnesium supplement at night to help sleep.

Magnesium glycinate and also taurine does work for me when it's bad. Get the powder - read lara briden's website for how much.

I've had a stint of severe unfathomable anxiety in the last two weeks and have gone back to the mag and taurine. I really think it's helping.

Some great advice. Second ovestin pessaries an absolute god send. Hope you see some improvement.

Let us know how you get on, OP? Sounds like the most common recommendation for you has been higher doses. let us know what dose works for you?

This Facebook group is brilliant.

www.facebook.com/groups/384849495215750/?ref=share

Regarding finding it hard to get the gel, you could try patches. I've been using different brands and I'm not sure I notice much difference. Though some people absorb differently.

Based on your symptoms I'd ask gp if you can raise (emphasise key meno symptoms) and then perhaps get another review in 3 months and ask for a blood test.

My gp certainly wanted to aim for the 400-600 mark. And I was still regular when I started hrt around the same time and age as you.

Menopause matters is also a really helpful forum.

Dry burning eyes was one of my main perimenopause symptoms, OP. You shouldn't be getting persistent genito-urinary symptoms on HRT either, this area should improve quickly. It does sound like the oestrogen you are taking is inadequate and your body is still struggling. It also sounds like your coil is defective.

All my symptoms have improved after 2 years on HRT and I have lost a lot of weight, but I still do struggle with hot flushes in summer weather or overheated places so I think I may need to up to Evorel 75 soon. There is an element of trying to hit a moving target - I believe that HRT given for perimenopause needs monitoring for effectiveness, and certainly testosterone takes a hit too as you go further into ovarian failure, but the NHS seems to have a real blind spot about this.

Have you tried anything non-pharmalogical? Genuine question.

A good question but no supplement except HRT can replace oestrogen once it depletes.

I really appreciate jinglinghellsbells’ advice on here and think she’s amazing in her patient help. However, I had a really bad experience with the much-recommended gynaecologist, both medically and in manner. Just wanting to provide balance.

Somewhere I've seen women describing testosterone as being the thing that helped their dry eyes. I have an issue with that but I do think they're a bit better on hrt. (I'm not on testosterone.) sea buckthorn really helped dry eyes but is pricey.

I take testosterone