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[joziel]

As some of you know, I’m on a high estrogen dose of 200mcg patches and 6 pumps of gel. This is doing amazing things for my sleep.

My worry is that, if I test with high levels (because I catch my own peak) I freak doctors out and they want to decrease this…

So I usually plan to test during my period and I have bloods booked in about 10 days time, which is supposed to be day 3 of my period.

However, my body has other ideas and I started to spot yesterday (day 18). I was hoping it was just because I ate a bit close to taking my P the night before and maybe didn’t absorb it. I increased P to 400mg last night (as usual for the last week of my cycle) but today I’m bleeding more, if anything.

My cycle has been a bit shorter than usual at 21-23 days occasionally but not at 18… Last month I got to day 26.

So now I don’t know where my cycle is or what the heck is happening. I’ve only been on this dose for 4 weeks so far and spotting or bleeding is normal in the first 3 months after increasing. So I’m not worried about that yet….

I just don’t know if I should go ahead with my bloods as scheduled - which could then make them at my peak - or if I should try to reschedule them for my next period (and how to avoid this happening again) 🤯 

The bloods are being done by my NHS GP ( free) although I’m with Newson. I get HRT meds from my GP & I don’t want her to freak out and stop following Newson advice… or refuse to prescribe this E dose etc. What do I do?

[CrispyChick]

Do you need to have the bloods this month?

Or, buy a medichecks or randox (£30) and do your own when convenient. Should still satisfy newson???

I'm.assuming it's Newson want the bloods, not the GP. In which case, I'd be inclined to keep the GP out of it. 

[bombsh3ll]

I agree with crispy, if your GP receives a high estradiol result it could compromise your access to the unusually high doses of estrogen that you are already really fortunate to be getting on the NHS.

Is it worth saving the cost of a blood test and potentially ending up having to fund your own treatment?

Leaving aside where you get the test, I have a couple of suggestions

1) would it help to do one cycle with just estrogen - no progesterone to muddy the water regarding when your natural period is?

2) what about buying some ovulation kits to check when this has occurred then you can anticipate a genuine period about 2 weeks later.

[joziel]

Crispy, no I don’t need bloods this month. The problem is it’s not just £35, to get T tested and SHBG/androgen index plus E - with a venous draw privately - it’s about £100. I could wait till Black Friday as there might be some deals then…

I had the same thoughts about keeping the GP out of it. Although she’s been very good so far and not questioned anything. But that was pre-Panorama.

Bomb, I’d be worried to do one cycle with no P on such a high dose of E. I’m not bleeding randomly I just think my cycles are getting very short. I also don’t know if I’m ovulating especially every month and on such a high E and P dose.

I now need to decide whether to keep taking P through this or to break and allow a bleed. Still not sure if this is mid-cycle breakthrough bleeding or my period....

[laszla]

The Randox female hormone test includes all of those - E2, T, SHBG, FAI - and a few more for 39 quid, have clinics all over the UK

[Moog77]

If there is a Randox near you I'd try them - they do venous blood draws and test SHBG and T along with E and P for much much less than 100 quid.

[Floo36]

Based on my own experience with spikes and fluctuations of estradiol I wouldn’t bother testing it at all. If you are peri then it won’t help working out what you absorb unless you are post meno or don’t fluctuate at all. I’m 56 and still have massive spikes, as an example on no Estradiol my bloods have been 650, 3400, 5200, 2600 pmol so no chance of knowing if absorbing apart from symptoms. Newsons don’t need bloods usually as they know in peri they are as good as useless and shouldn’t stop you receiving the right treatment, some meno specialists and GP’S however will use bloods against us to stop giving us the Estrogen we need.  Only based on my own experience.

[joziel]

I don't have a Randox anywhere near me. The nearest would be in Southampton, in the middle of the city, which is about 50mins away.

Newson do want me to test, since I'm on such a high dose of estrogen. My bloods have never been higher than 330pmol. (They also want a testosterone test from me as it's been more than a year.)

[bombsh3ll]

Can't randox send you a kit and you get a local phlebotomist and then post it back?

I've looked at them and I know they send out DIY blood taking kits (which aren't for me, I prefer venous) but if you can post that back I can't see why you couldn't post a venous sample back like with Medichecks.

[CrispyChick]

So, everyone's has a peak if cycling. As long as your peak is still within the limits - I can't see the problem.

If your level is over the limits - surely you also need to know this??? Being on super high dose is fine, if that's because that's what you need to absorb. But it's not fine for your body if it takes you over range.

I know you keep telling us you need these super high doses to achieve levels in the 300s. But if you're testing normally on your period, most people's E would not be in the 300s on their period.

All blood tests come with ranges specific to the time of month you test.

[joziel]

Not really on HRT, Crispy. The NHS pays no attention to when bloods are done if you're on HRT and get levels checked. They are not trying to get you within range for that part of your cycle.

And yes, I do need my baseline level to be high enough to even out the fluctuations. If my own body is creating peaks of 1500pmol and then it is cutting out to 50pmol, at random moments during the month (not correlated with the cycle, as that is what peri chaos is), then that is going to cause huge symptoms. Whereas if my baseline from HRT is around 450-500pmol, that prevents the dip from being too low. And no, I don't need to know what my levels are at their peak because that is short-lived and temporary (just like it would be in a pre-menopausal woman not on HRT) plus as I progress through menopause it's going to change a lot as I will stop making that much E as my own cycles cease, so it's chasing a moving target to even be interested in it.

Pre-menopausally, E would not be in 300s during someone's period, no. But I'm not pre-menopausal, I'm treating the hormonal chaos of peri-menopause so I need a higher buffer to negate those fluctuations. The levels for each part of the cycle are irrelevant once you start HRT. OR even once you are peri, if you test at any other time of the month - since you don't know how much is coming from you and how much from HRT. The only way to make sense of that is to test during your period to try to eliminate most of what's coming from you... otherwise it's a pointless test altogether.

By the way, when my E was around 330pmol during my period, I did not bleed when I withdrew P each month. I did not have enough E to even cause any build up at all. Only now I've increased E am I having something more like a normal period, although it's much lighter. And only since increasing E above that level has my heart stopped pounding through the night, and my inner tremors died down to a faint buzzing in my feet, and my sleep improved considerably. So I can tell that my body needs higher E.

bomb - randox don't do venous blood draw kits that I can see. It's finger prick or go to their clinics....

[bombsh3ll]

That's a shame about randox blood test kits, I wonder if it would be worth contacting them and specifically asking for a venous kit?

I do have one suggestion thinking back to my own experience during COVID when I couldn't get my usual pill;

I ended up on double desogestrel daily for menstrual suppression, which did shut my cycle down effectively and left me with a stable low level of endogenous estradiol (around 100pmol/L), no ups and downs.

Some patients with endometriosis are left on this for years, and I wasn't suffering in any way at that level of estradiol, however for long term health I wasn't happy to live with this and chose to go back on a COCP as soon as I could.

This could be a reasonable short term measure for you and not too expensive if you just test estradiol. You would do one test whilst shut down to check your baseline (as this won't be zero), then add your usual dose of estrogen and test again.

The difference between the two values is what you are absorbing.

[joziel]

Hmm, I'm a bit reluctant to mess around with shutting down ovaries etc just to get an accurate E reading from HRT.    I mean, it will be pretty accurate if I test whilst I'm bleeding... I might be contributing a small amount at that time but the majority of it will be from HRT.

I've never tested with high E ever. The highest I ever tested was 450pmol and that was when I was on only a 37.5mcg patch back at the beginning of all this, so most of that was from me - the test wasn't during my period because I hadn't figured that out then.

Weirdly, I have experience with desogestrel. I was on it for about 8 years from age 35 (after laparoscopy for endo) until 42 (when I began to get low E symptoms). I wasn't happy to be on it but I'd tried levonorgestrel POP before it and that hadn't stopped me bleeding slowly for months and months and months. I don't know why as 5 years earlier I'd been on levonorgestrel for 10 years without any bleeding issues, so why I couldn't go back to it I don't know. And I had to be on a POP it seemed, or I'd get endo symptoms. (I now think I would have been fine with body identical P, but no one knew about that then.)

Anyway, I've tried using desogestrel along with HRT back at the start of all this 3 years ago, to see if shutting my ovaries down would stop the fluctuations and the weird night time symptoms. But it didn't work. So....