Print

Please login or register.
1 Hour 1 Day 1 Week 1 Month Forever
Login with username, password and session length

[olive]

Hi lovely ladies. It's been a while. After Evorel patches (fail), 6 pumps of Oestrogel (fail), Elleste Solo tablets + testogel (higher bloods but no symptom improvement so both discontinued), I'm now on 125mcg Estradot (absorbing at least some, as my estradiol has gone from <88 to 132pmol).

But here I am still permanently drained of energy, less than half a brain and no libido . In July my GP made it clear she won't dose me any higher. I don't know what to do. Push for referral to a specialist? (and end up waiting a year for an appointment!....) or consult with someone private and ask what they would do with me?

it's been such a battle so far and I'm no better off, but I can't live this way so I have to keep trying

Answers on a postcard...
Olive x

[bombsh3ll]

This is likely to be beyond an NHS GP and best handled by a specialist.

Estradiol should be an absolute minimum of 250pmol/L for bone protection (as per NHS literature). The late Professor Studd considered 300pmol/L to be the threshold.

Some women need higher than this for symptom resolution.

First off I would get on the waiting list for an NHS menopause clinic. This however is likely to be months to years depending where you live.

If you can afford it, seeing a private specialist would probably be well worthwhile in this situation.

There is probably scope to try a higher oral dose - the elleste solo may only have been 1mg. Oral at least bypasses the skin barrier, and the NHS considers 2mg a standard dose so you might have better luck there in the meantime whilst you get this sorted properly.

[olive]

Thank you bomsh3ll.

The Elleste was 2mg, I should have specified, and my bloods went up to 274 on that. I fought for tablets due to having proved a poor absorber. But my already high SHBG (though nothing about me or my lifestyle explains that!) went through the roof so GP said no point in that as it's only reducing bioavailability. Had I actually felt better, I think she would have let me continue. I'm glad I've finally found a transdermal I can absorb, but it's clearly still struggling to get through...

I think you're right and I should probably go for private while also asking for referral on NHS.

It's a tricky time with lots of scaremongering and gaslighting about private clinics giving women "too much oestrogen" so it would be interesting to see if the private approach is still more flexible.

[Elliebee]

Olive have you had thyroid checked? Other things that can cause the symptoms you describe are low iron and ferritin, low vit D and B12.

Get these checked if not already done so.

[sheila99]

The NHS gets hung up about the amount that goes on your skin whereas the important factor is how much is absorbed. The guidelines may be right for most people but not if you're a poor absorber. Given the length of time you have to wait for an NHS clinic I would go private if you possibly can. Your oestrogen is way too low but tiredness can be caused by so many other things too so I agree with the recommendation above to get other possibilities checked out too. You would probably benefit from testosterone too but that needs a specialist and usually your oestrogen levels need to be optimal first.

[olive]

Olive have you had thyroid checked? Other things that can cause the symptoms you describe are low iron and ferritin, low vit D and B12.

Get these checked if not already done so.

Elliebee thank you for asking. Yes, all done repeatedly and all normal/good. On paper I'm ridiculously healthy. Sadly I feel the opposite!

[olive]

The NHS gets hung up about the amount that goes on your skin whereas the important factor is how much is absorbed. The guidelines may be right for most people but not if you're a poor absorber. Given the length of time you have to wait for an NHS clinic I would go private if you possibly can. Your oestrogen is way too low but tiredness can be caused by so many other things too so I agree with the recommendation above to get other possibilities checked out too. You would probably benefit from testosterone too but that needs a specialist and usually your oestrogen levels need to be optimal first.

Thank you Sheila99 agree entirely. I've already spent £000s over the past 5 years trying to find out what's "wrong" with me and after mapping everything out, it all points to menopause.

[CLKD]

Hi where did U spend the £s? 

[olive]

Hi CKLD

After my GP tested my iron (age 49 I said I'd been exhausted and 'off' for the past couple of years and couldn't think straight, but I knew it wouldn't be iron - I just didn't know what it WAS) it was clear we were done as far as she was concerned.

So I started doing my own research and paying for private tests, everything from cortisol to VitD, intestinal permeability (so-called 'leaky gut' which I was accused of in the annoying 'guessing game' often played by professionals), DUTCH test (don't! clinicians will dismiss it out of hand!), bone profile with vit/min analysis, worked with a very good nutritionist for 2 years with 4 rounds of personalised supplements to no avail, consultant endocrinologist with another raft of very expensive tests followed by a patronising pat on the head. The list goes on... NO one even raised the prospect that my problems could be menopause related. Given my age, that's astounding. Basically the only things out of whack on paper were sudden insulin resistance (I'm slim and eat low-carb so wtf?) and high cortisol (oestrogen plays a significant role in controlling both!). Otherwise it was crushing fatigue, early waking with palpitations, difficulty concentrating etc. which people kept blaming on me despite a super healthy lifestyle and no change in stressors. In my early to mid forties I was in a great place. At 47 I just started feeling like cr*p.

When I started hot flushes age 51 my GP did then put me on the lowest dose tablet. When I said it was helping with the flushes but nothing else, she said there was no other option on the NHS. I soldiered on. Cut to a couple of years ago and I finally found this forum and similar, thank god. At which point I realised it wasn't just me, I'm not a hypochondriac, and I had been thoroughly gaslit. Ultimately, after losing steam a few times, I sat down with it all and figured it out for myself. So while I'm still on a quest for the right formula, I'm hardened to the fobbing off now and won't stop pushing although it's still so draining. Ugh.

[bombsh3ll]

If you have already shelled out that much money on fruitless endeavours that are heavy on marketing and light on evidence, why not just see a private menopause specialist and get on the optimal treatment for you.

That way you will a) know what you need and b) be comfortable and have a good quality of life whilst battling it out with the NHS to get your treatment long term.

In some cases the NHS will not support the totality of treatment that someone needs, for example higher doses of estrogen, or testosterone. In this instance you get what you can on NHS prescription and fund the balance yourself

[olive]

If you have already shelled out that much money on fruitless endeavours that are heavy on marketing and light on evidence, why not just see a private menopause specialist and get on the optimal treatment for you.

That way you will a) know what you need and b) be comfortable and have a good quality of life whilst battling it out with the NHS to get your treatment long term.

In some cases the NHS will not support the totality of treatment that someone needs, for example higher doses of estrogen, or testosterone. In this instance you get what you can on NHS prescription and fund the balance yourself

Yes indeed bombsh3ll, that's the plan I'm now thinking of. I did actually see a meno specialist a few years ago but it wasn't a good experience - long story - so I gave up and went back to my GP. But there's a good private meno clinic a few miles from here. I spoke to them this morning and they were really good. They also try to work with GPs to reduce the cost by asking GPs for bloods if needed, and by prescribing only what's necessary to supplement the NHS prescription. I'm going to book an appointment. I have a Simply Health cash plan so at least I can get the cost of the initial consultation back.

Thank you so much to you and everyone else for weighing in on this. It's helped me though the sunk cost fallacy and given me the oomph to try again. I'll be back with an update - 15th time lucky?!   xx

[bombsh3ll]

Good luck and please do share your experience after you see them, it really helps others who are looking for good quality menopause care.

[orrla]

I am reading all this and thinking.. Why exactly NHS bothers with HRT at all...? Its recommended doses are neither here or there mostly doing nothing. What's the point of taking some drug that's is not doing anything?!

These doses they are so fearful to exceed do nothing, so what's the point in giving them to women at all?!

[bombsh3ll]

The microdoses prescribed will be having a placebo effect in a significant number of people.

We know that by the fact that whatever is being tested the placebo group also improves.

Also there is the dogma about it only being for symptom relief, to take the edge off a few hot flushes.

Plus the fact that many clinicians and women understand that estrogen is heart and bone protective etc but not that all these findings came from an era when physiological doses were used.

"Standard" doses have been progressively reduced to cater to all the fear mongering, without regard for whether these either effectively treat symptoms or provide health benefits.

The clinicians who used to prescribe therapeutic doses pre- WHI are all now retired. Nobody dared to even say "hormone therapy" for 20 years let alone prescribe it.

Generations of doctors came through without any training and no idea what a therapeutic dose is.

The move to transdermal also masked a significant reduction in what dose is considered "standard".

For example a 50mcg patch is considered equivalent to a 2mg tablet or 1.25mg premarin, when it really, really isn't.

[AngelaH]

Bombsh, when your time comes, you probably will be surprised. 

When I was in peri I had horrible symptoms, I had hot flashes and night sweats, insomnia, foggy brain, fatigue, joint and muscle pain, dizziness, anxiety and depression, itchy skin over my whole body…. list of symptoms too long… Simple mirena coil sorted all symptoms out just overnight.  “Heavy duty” HRT would kill me definitely.