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[bombsh3ll]

Do let us know what level you're at on 100mcg!

And yes, there are women topping up the combi patch with a small dose of gel.

But this is non standard treatment, and does change the E:P ratio.

So it should only be done under specialist supervision and if it is continued longer term you should have a scan periodically to monitor the endometrium.

[joziel]

Crispy, sometimes I think all this hormone measuring is... Well, I know why we do it - because we just don't have anything else to go by or to do when trying to figure this out, but watch this YouTube clip (I've set it to start at the right place). This is one woman, post-menopause, having her stable HRT estrogen dose measured at multiple times through the day: https://www.youtube.com/watch?v=RZYX75Kesbk&t=1728s

[CrispyChick]

Oh. Thanks joziel.

That is very interesting...

And yet Newson go by blood tests, do they not???

Anyway, day 5 on my double patch and my joints are loads better already. So I will test (same time as my last test) to see. I think I've read levels are always higher in the aft. 

To be honest, I just needed to know my levels are decent enough to rule levels out. Unfortunately it's still not my answer. Something else is at play. 

[bombsh3ll]

Crispy, sometimes I think all this hormone measuring is... Well, I know why we do it - because we just don't have anything else to go by or to do when trying to figure this out, but watch this YouTube clip (I've set it to start at the right place). This is one woman, post-menopause, having her stable HRT estrogen dose measured at multiple times through the day: https://www.youtube.com/watch?v=RZYX75Kesbk&t=1728s

I'm actually quite interested in the potential of FSH as a marker - this has never been used in mainstream clinical practice but there is evidence that high FSH correlates with multiple undesirable health outcomes such as osteoporosis, cardiovascular disease and Alzheimer's pathology, independent of estrogen.

Obviously the immediate symptom and quality of life concerns guide treatment for many, but I believe FSH could have utility in the future for those interested in long term health outcomes.

[Emma]

...in light of Dr Currie's latest post...

https://www.menopausematters.co.uk/forum/index.php/topic,71486.0.html

"...any decision about changing your HRT should be with a discussion with your healthcare professional, taking into account your medical history, other medications and types of symptoms and/or side effects."

[joziel]

bomb, my FSH is low....

Crispy, it can take a while at the right dose before you know. I tend to see an improvement of some kind within 48hrs but it can take up to 2 weeks for my neurological symptoms at night to improve.

I also don't know at what level we can 'rule levels' out. I forwarded my blood results onto my Newson Health doctor. My estrogen was 893pmol and I'd already halved my gel dose after getting that result (from 6 pumps divided 3 AM and 3PM to just the 3 pumps at night), along with 2x 100mcg patches which stayed the same. My Newson doctor just said these were within the range they aim for (250-1000pmol)  and didn't advise any adjustments based on levels alone there. Whereas the doctor at the private blood test clinic had given feedback suggesting I reduce 'according to the Chelsea and Westminster NHS guidance' blah blah. But he doesn't know the severe neurological night time symptoms I'm dealing with. So I may well go back up again if needed.

I have just started to use 100mg utrogestan vaginally this cycle, along with 200mg orally still. So far I haven't noticed any huge differences at all. But we'll see if I still get my period around day 20. If I make it longer, perhaps I am absorbing more of the utrogestan. If it makes zero difference I will go back to all oral because it's an extra faff.... So much trial and error and nebulous variations and way too many variables. And I am still getting back onto levo as well - this Saturday is 2 weeks since I restarted so levels will be 75% of final levels by then, so it's going to increase some more...

[Mary G]

I'm not convinced that hormone blood tests are worthless. 

I have just had my annual health checks and as always, my oestrogen blood level is 270 and it has reliably been at between 270 and 300 (in pmol) for years.  I am 63 and over 15 years post menopause and use one pump of Oestrogel.  If blood tests were as unreliable as the NHS like to suggest, there is no way on earth they would be so consistent year after year. 

Blood tests might be unreliable in peri menopause but they are not unreliable post menopause.

I also had a DEXA scan this year and it came out better than 5 years ago (0.4 as opposed to 0.3 on hip and spine) so this level of oestrogen is working well for bone density in my case at least. 

[bombsh3ll]

I believe that at the bottom end blood tests are helpful for sure.

Even the NHS accept that a threshold of 250pmol/L is where bone protection can be reasonably assumed for the majority.

Personally I favour prof Studd's threshold of 300pmol/L, but the point is acceptance that there is a minimum threshold for health benefits, regardless of where you believe that lies.

Not everyone has symptoms, my mum had none, and when I was in chemical menopause prior to IVF, nor did I. But I absolutely don't want osteoporosis, which both my parents have.

Also if someone is taking a reasonable dose by whatever route, if they are getting no benefit from it, then a test is very worthwhile, rather than than telling them they must be imagining their ongoing symptoms or suggesting antidepressants instead, when they may simply not be absorbing it very well, or at all.

But I don't think that someone who feels well and is really stable on their treatment should have their dose arbitrarily reduced based on a single "high" reading, as this may have been significantly different had they tested at a different time of day.

[CrispyChick]

Ok. Just to conclude this thread...

Within days of doubling my patch dose my severe joint pain is abating.

So. Let's not forget I measured at 72pmol on 50mcg patch only last week (with zero of my own E). And my joints were scraping on the floor.

So yesterday, day 5 of 100mcg patch  I did a fingerprint test. Results (super speedy!) 629pmol

I'm not sure what to conclude with that:

A) finger prick tests are unreliable?
B) my finger is contaminated by touching the patch on changes?
C) I really have super absorbed 100mcg in 5 days??? I mean, my joints say I have. 

Unfortunately, for me, I've proven what I needed to. There is unfortunately something a lot more at play for me than hormone levels. As I still feel hideous. So I'm stopping the whole lot.

But thought you'd all liked to see these results.

[Mary G]

Crispy, that's very disappointing after all the effort you have put into it.  What is your next move?  Have you thought about getting some specialist help like an endocrinologist or a different type of specialist?

There must be someone who can help you.

[CrispyChick]

Thanks Mary.

Yes, I have an endocrinologist referral.

This has been the most brutal thing I've ever put my body through, but it has proved the hormonal levels themselves are not my problem. Well, not most of it. I can see in this cm what my real peri symptoms are. So I'm going back to them. They are horrible, but they're not the same as the hideous ill feelings I get.

Right now my plan is to stabilise on nothing. Because I've messed so much I do wonder if I'm dealing with a highly oversensitised nervous system.

I'm broken to be honest. Absolutely broken. But I'll keep going for the sake of my children. 

[Dramy3]

Thanks Mary.

Yes, I have an endocrinologist referral.

This has been the most brutal thing I've ever put my body through, but it has proved the hormonal levels themselves are not my problem. Well, not most of it. I can see in this cm what my real peri symptoms are. So I'm going back to them. They are horrible, but they're not the same as the hideous ill feelings I get.

Right now my plan is to stabilise on nothing. Because I've messed so much I do wonder if I'm dealing with a highly oversensitised nervous system.

I'm broken to be honest. Absolutely broken. But I'll keep going for the sake of my children. 

Hey Crispy

Your poor body and mind have been through so much. Personally I found a good therapist helped me make sense of the sh@tstorm that hit me 5 years ago (hysterectomy + breast cancer + autoimmune arthritis all in 5 months). It’s not for everyone and finding the right match is so important, but it really helped me. I finally feel emotionally robust enough to tackle whatever my body throws at me. It’s a long, slow, sometimes painful process, but has been a key element of survival for me. Most therapists offer online sessions so
You aren’t limited to the options close to home. I chose a woman in her mid-50s who uses an integrated approach.

I hope you find balance soon—you deserve it.

[CrispyChick]

Thank you Dramy. Very kind words x

My GP mentioned phsychiatrist referral. Is that the right thing? I declined, but I'm thinking of asking for it now. I do feel like the last 3 months have traumatised me even further.

I want to do antidepressants too. I need to get out of this awful overthinking cycle. I just find the start up really really hard.

I'm glad you have now found stability. I know it takes time and I'm now ready to stop.messing with my hormones as they are clearly not my overall problem. 

[Mary G]

Crispy, I'm glad you have a plan and you are not just left with nowhere to go.

In your situation, I would research all options and probably consult two or even three different specialists.  I think with something as complex as this, you need several opinions.  It might end up costing money but it will be worth it, particularly if you get your life back and you can work again.

Hopefully other members will have some recommendations and luckily, most specialists are happy to have telephone or video consultations now.

[bombsh3ll]

I'm sorry this hasn't gone the way you had hoped, however it can take up to 3 months to stabilise on hormone therapy and you have only been on the 100mg patch for a few days.

Unless you feel the HRT is worsening things for you, I would be inclined to persevere for a while longer to give yourself chance to acclimate and stabilise.

This doesn't mean you can't pursue psychological intervention alongside.

Given the physical stresses that you have been through, some form of talking therapy if you can afford it is probably way preferable to introducing psychiatric drugs into the mix as well, which don't help nearly as many people as we would like to think they do, have some really toxic side effects and can be difficult to come off.