Print

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

[Joaniepat]

pmol/l is the normal measurement for estradiol blood tests in the UK. Other units of measurement can be used for serum levels of other hormones. Also, other countries use different units of measurement (esp USA). So the one you want for your estradiol from a blood draw is definitely pmol/l. Hope this helps.
JP x

[Marchlove]

Yes Kathleen, it probably is the difference between venous and finger prick.

Symptoms are absolutely key x

[joziel]

OMG, my bad!!   

I just got out my results again to check this and I got the unit of the first test confused with testosterone - which is in nmol.

My 233 result for estrogen was pmol/l.

Well that makes even less sense really    Because it really does mean that I almost halved my patch and doubled my estrogen 

It must be my own ovaries. I don't get how they have done this but perhaps 200mg of utrogestan allows your ovaries to contribute more estrogen than the desogestrel POP does. And perhaps they have just taken a while to wake up fully after 9 years on the POP... like more than the 9 weeks I gave them before the first test. I can't think of any other explanation.

Also - y'all should beware of desogestrel if you're not on HRT. It causes low estrogen. If I hadn't been on it, I probably would still be fine and not have had low estrogen symptoms I reckon. On the plus side, I have discovered that I can use body identical progesterone to suppress endo in all this - I never knew that was an option before and doctors don't prescribe it by itself (without estrogen). So arguably it has all been a good discovery... (Might be a bit premature to state the last fact, will give it a few more weeks till I know for sure!)

[Pippa52]

Hi Ladies - sorry for radio silence recently.  Have been quite unwell.  Over the w/e my blood pressure shot up really high and along with fast heart rate and feeling off the scale anxiety and no sleep plus very shaky and light headed.  Spoke to GP who thinks there might be something else going on not just HRT issues so have been referred to see a cardiologist this week.  Dreading it in one way but obviously need to know what is going on as can't continue feeling this under the weather.  Hope so much you are all on the up.
Lillith - how are you doing?  the last time you posted you were not good at all hope so much you are feeling a bit better xx
joziel - hope all is going well on your 25 patch xx

[joziel]

Gosh Pippa, that sounds a bit scary. Hope you are okay. Let us know what the cardiologist says.

I'm doing much better at night on the 25 patch, but it's not totally normal. I mean, I still get the fluttery feelings and throbbing at night (which I think is high blood pressure) - especially if I wake during the night - I'm aware it's there, but I can now sleep through it. However, like you, I don't think this is 'normal' and it's not something I can accept long-term. So if it continues I will have to go back to my GP to investigate things more.

Meanwhile, having reduced to the 25 patch, a week later I had a flare of what I think is my VA. Only it involves the same glue-like thick pale yellow/clear discharge I had before starting HRT back in March - as well as slight burning in the vulva. I've very occasionally had a tiny bit of the discharge now and then on HRT, but nothing like this. So I don't know if this is just how VA manifests itself in me (it's not the normal watery VA discharge) and it's because I've reduced the patch - or if there is something else going on. But I had 2x swabs for thrush back in March and an exam where everything seemed okay. I've just made another appointment with a new GP at this new big practice I've moved to, for this Weds, for an exam.   

I'm not looking forwards to attempting to explain all the complexity of this to a new GP... I get a bit nervous about the responsibility and importance of me accurately communicating history and details in X minutes. I'm sure I come across as nervous, but I'm not nervous about having an exam or seeing the GP, so much as the pressure to get everything said and right in a few minutes    I wish I could just have one GP and some continuity, so I didn't have to explain things from the beginning - but I refuse to keep going back to a doctor I don't quite trust or one who I know is just plain wrong (ie telling me I can't have Ovestin AND Vagifem - as the last one!).

Meanwhile I've increased my Vagifem to every night and Ovestin to morning and night...

When is your cardiologist appointment Pippa?

[joziel]

I might be joining you at this rate Pippa. Lying awake here on my 25 patch with a fluttery heart palps and lightly throbbing feet this time.

I’m going to have to stop all estrogen and see what happens. It’s not good either way. If I don’t need the estrogen yet and my ovaries have sprung back after the desogestrel and started making my own again and the heart palps stop then I might be okay for a few more years. But at some point I’m going to need this estrogen. I don’t really want to have to take blood pressure meds just to be able to use estrogen 😔

If the heart palps don’t stop when I stop estrogen then I’m going to end up with a cardiology referral.

😕 But I think it’s reached the point of stopping estrogen to be able to diagnose what is going on now instead of just blindly hoping it’s going to magically stop all by itself.

Meanwhile I’ve got this VA discharge and discomfort to deal with. 😞 It’s all a nightmare.

[Pippa52]

joziel - oh nooo so very sorry to hear this.  It is all such a total minefield.  The most bizarre thing is that on both the patches and the spray I felt without doubt the dose was too high for me.  However back on Oestrogel as you know and for over 20 years I was on 3 pumps.  As you know I have been feeling beyond rotten so thought sod it I will just go for it and see and I raised my Oestrogel to 3 pumps yesterday as suggested by my GP  like I was always on before.  I have been putting it on twice a day 12 hours apart as an experiment to see if it was more level and lo and behold yesterday evening I started to feel almost human, I slept last night with only a few hot flushes but no palps and today I have really picked up.  Been out in the garden doing some gardening - can't belive it really considering I was supposedly on a lower dose with Lenzetto.  My mood is also back to normal happy yet with all the other types of HRT I never ever felt totally right....far from it apart from a few slightly better days which never lasted.  Its so true what suits one person doesn't another.  I have my cardiology referral tomorrow and am feeling a bit of a fraud as my blood pressure this morning was 119/20 so nowhere near high.  However last week it spiked at 190/91 which I have never ever had before so it all needs checking out I guess.  My GP is not convinced all this has been because of HRT but I think it most likely is - so many different types and doses in 3 months its not surprising my system is all over the place.  Are you going to stop your HRT today?  I understand why you don't want to take your BP I hate taking mine - maybe ask your Dr to take it for you when you have your appt with the new Doc?  They will probably want to take it anyway I would think just to check everything.  All I can say is I feel for you fellow HRT Warrior - this has all been beyond awful.  I see you posted at 4.52 am.  The nights feeling worried and awful are so so hard to cope with.  Sending love and empathy xx

[joziel]

Thanks Pippa, you know how it feels, I know  That is really interesting about your gel increase making you feel better. I wonder if it will stay like that, as it seems to take about a week before an increase has its full effect? I hope so for your sake!! Good luck for your cardio referral - that came through quickly!?

It's been weird these last couple days. Yesterday I got sharp pains in the ovary area (both of them) again, just like I did last time I stopped the desogestrel - both times we are now at 4-5wks after stopping, so clearly that's how long it takes for the ovaries to wake up    They are much better today though. I wonder if the ovaries are releasing more estrogen too, because my anxiety, high blood pressure pulsings, and just feeling pumped and on it has been all day now, today and yesterday - not just at night - and I'm only on a 25 patch. (And anxiety wasn't one of my pre-HRT peri symptoms!) I am trying to work at my computer and I feel like I am about to go in for an important test or something, really adrenaline-ised and cortisol-ed. It has got better this evening, thankfully, as I might be able to sleep...

I am now thinking - do I really need HRT yet, or was all this just caused by desogestrel suppressing my estrogen really low, after 9 years on it... My FSH was only 4 when tested last year, so I should still be producing estrogen and the ovaries should not yet have failed(!). I wasn't sure if the utrogestan at 200mg nightly would suppress them like the desogestrel - but maybe it doesn't. It would be amazing if it suppresses my endo whilst allowing my ovaries to contribute estrogen. (Unlike desogestrel.)

Of course, I should be able to use a 25 patch whatever - even if I have my own estrogen, it's hardly a high dose. But perhaps I am really sensitive and there is a low-ish range that I am comfortable in and my own estrogen is taking it too high with the patch as well now.

I'm going to keep the 25 patch on for the doctor's appointment tomorrow but then I might take it off and see how things go - and do a Medichecks test not on any estrogen except my own... (Although I know that can vary.)

I don't know if the doctor will take my blood pressure tomorrow, I was going to try to stay focussed on the VA symptoms because I will be talking for 5 hours if I try to tell her everything. My plan was to focus on the VA and get an exam and hopefully get her to prescribe Vagifem daily - and potentially return another day to address the estrogen side effects, heart palps and all that side of things. Meanwhile, to trial stopping estrogen... I haven't had any discharge today at all, these last 3 days with daily Vagifem has been a steady improvement again. So it is quite tempting to chicken out of the exam. But then I thought, just for my own peace of mind, maybe I should go anyway. I mean, women in the US have ANNUAL routine pelvic exams  They don't hurt me, but I do get anxious about the lack of control. (I'm a control freak.)

I will stay on utrogestan though, because it is working to suppress the endo so far. And I'd far rather be on that then synthetic progestin like desogestrel again. And any time I feel estrogen dipping, I can easily add a low patch in again...

[Marchlove]

GO Joziel Go! Try not to overthink it now and just go with the flow.
You will learn from the experience, the only thing to ask, as you say, is what is my priority for today.
Good luck xxxx

[Pippa52]

Yuck here I go again it’s 3 am and about an hour ago I was woken up with tachycardia and high blood pressure. I was so dopey it took a while to get the BP monitor on but it was 180/83 so pretty high but it went down to normal over the next three minutes. So I don’t feel a fraud  going to see the cardiologist now! I do still feel heaps better from being back on the Oestrogel  in between the episode today so maybe the GP is right and this is actually not linked to HRT at all.
Joziel… hope so much your doctor‘s appointment goes well and that the doctor is nice knowledgeable and helpful. Please let us know how it goes and I will do the same after my appointment today xx

[joziel]

Pippa, what you're experiencing really interests me because it's also what I'm experiencing. Even though I'm getting reasonable sleep at the moment, if I wake during the night, I'm aware that my heart is fluttering and I feel high blood pressure-y (pulse-y). A couple nights ago the pulse we have kind of between our lower ribs was beating really hard too. And my heart rate can also be much faster than usual. It can feel like there's something on your back, somehow. It feels like something that is being done to you, and not a normal response of your body to what's going on in your mind.

Then I will have times when I feel totally fine. And it seems to mystify every doctor I've mentioned it to. Which is why I'm really curious if you get any answers...

For me, this all started when I began HRT. It gets worse the more estrogen I have, and better the less I have. And it happened when I was 21yo and took a synthetic estrogen combined pill as well. So for me, it is a reaction to estrogen. I have no idea why it makes me react like this though, or what the implications of this are for me being able to take HRT. I am just hoping that if I stop the estrogen, this will go away as well. That might not be a great solution for the future but at least I don't then have a heart condition to treat...

I'm really interested to hear what your cardiologist has to say. I worry that there isn't a solution except being put on meds like beta blockers - and there can be side effects to those when taken long term.

[Gnatty]

I imagine you have both already tried this, but just incase not, what about magnesium? It does seem to help a lot of people with problematic heart beats.

[Scampidoodle]

Hi both, I’ve been off the site for a while. I know you were exploring histamine for a while joziel? Just because your symptoms are so similar to mine. I get the heart throbbing and fluttering. Always worse in the night and waking. Mines all down to histamine and mast cells. I can’t take estrogen as actually my own is what’s causing the problem! I mistook for peri a few years ago.

Have things gotten worse since coming off the pill or better?

Is coming off the E all together an option joziel?

And interesting what you said a while back Pippa about you were ok until oestrogel changed the formulation. I was ticking along on Estrogel (with a few what I now know as high histamine symptoms) but when I got Oestrodose from the pharmacy I felt absolutely awful. Mentally I was so depressed, anxious, jittery. Allegedly the same stuff but clearly there is a difference to those of us who are sensitive.

Anyway I went up to three pumps when back on the estrogel and then it all hit the fan and my histamine levels hit the roof. I’m now off all estrogen and probably never needed it as my FSH is low and actually estrogen (especially rising estrogen) is my enemy now! Not saying this is your issue but just some more info anyway x

[joziel]

Gnatty, already on magnesium bisglycinate 400mg/day.

Scampidoodle, my low histamine diet made zero change to my symptoms. I am taking quercetin 2x daily anyway, but I don't think it's histamine. Can histamine cause high blood pressure? Why would my REALLY STRICT(!) low histamine gross tasting diet not have helped?? I have some DAO but I haven't even tried taking it yet. Maybe I will start to take it before meals and see if it helps at all. (I do think I had a slight allergy to cow's dairy, since I have been on sheep and goats dairy only for a couple weeks and my runny nose and watery eye appear to have stopped - gee - how many suboptimal things do I have going on?? I thought that was low estrogen too, but turns out to be cows dairy - thanks Lara Briden for that one... )

SO - AN UPDATE!!

Today I saw this new GP and SHE WAS EXCELLENT!! She didn't have all the answers for everything I'm experiencing, but she LISTENED, she was quiet and attentive, she wasn't a big personality, and she really thought about things and we both sat there unable to make sense of my "why is this happening?" question.

As I said above, I didn't plan to tell her about the blood pressure and palps today - because I thought that would be too much to go into. But I mentioned it in explaining why I'd had to reduce my estrogen to 25 patch - due to estrogen side effects. And she wanted to know more.... So I told her everything.

She took my blood pressure which was 163/90 or something horrendous. She took it twice. The irregular pulse icon was on. I said that always comes on, when I use my home blood pressure machine too. She listened to my heart and said I have a lot of ectopic beats. She said that can be normal, but it's a lot. That's why the icon is coming on.

We talked about this all beginning since I started HRT in March. And that it gets worse, the more estrogen I take - and better, the less I take. And that the same thing happened when I was 21yo and went on a combined pill. We stared at each other in shared complete lack of comprehension about why this is body identical estrogen, the same stuff my own body makes, and I am only on a really low patch at the moment - and it's still happening. Even if I don't need this patch, I should be able to take 25mcg of additional estrogen without all this... it's very safe stuff(!).

So the upshot of what we decided was: I am to come off all patches/estrogen and see what happens. I have already ripped the patch off    I am to have a review with her in 4 weeks. If all this is still happening then, I need a cardiology referral. Because maybe it's just a coincidence that it is happening now, having started estrogen. Maybe I have some heart stuff going on.

If it stops and I don't need additional estrogen now (because my ovaries are making some, now I've come off desogestrel) then everything is great - for now. It's not going to be great when I do go through menopause and I do need estrogen... I might have to just accept I can only have a very very low dose of it and hope that is enough for SOME protective health benefits.

If the cardio symptoms stop and I get peri symptoms back and need estrogen now, then I need a referral to gynaecology who will help me - there are some other meds which can treat symptoms, although of course they won't have the same health benefits as estrogen.

And then... With the discharge situation, she said the pale colour was fine and she couldn't see any sign of LS or LP. She said the cervix and vagina looked fine. She did a swab for thrush and BV but she said she doesn't think it's either. She thinks it is probably just my own discharge starting up again now I'm on estrogen and have stopped desogestrel and maybe now my ovaries are being more active - even though I'm still on 200mg of utrogestan.

I'm not sure about that, because why am I getting burning and stinging in the vulva and why does the discharge feel acidic when it comes out... She didn't seem to know much about vaginitis-es and other things this could be. So we have decided I can have daily Vagifem for some months because it seems to be pretty much fixed with Vagifem(!), but if I need Vagifem daily ongoing then I will have a referral to gynae to be sure nothing else vaginitis-like is going on, and to approve that because it's off licence. Or maybe I can get an e-string.

Lastly she asked about my thyroid as a possible cause. And I told her I'd had TSH and free T4 done and that was all they would do. But I think I am now going to do the Medichecks 'everything' thyroid panel including thyroid antibodies, just to be sure.

So - no magic answers or solutions, but I've taken the patch off and now we shall see what happens. It might be a few weeks because the palps and blood pressure took about 2-3 weeks to start up when I began HRT, so it might not be a quick change...

[Marchlove]

That sounds like a very thorough consultation Joziel, you must be pleased.
Even though she didn’t have all the answers she listened as you say, which is half the battle. She sounds like your best doctor yet!

I had a consultation with my meno specialist today and we talked about bladder pain as I had a flare up yesterday. I do not have VA (as yet) but every now and then I get cystitis and intense burning.
When this happened yesterday I took 1/2 teaspoon of bicarbonate of soda and within an hour it had gone. I told her this and she confirmed that, yes if it feels acidic this is a good remedy, not to be used too often as your bladder needs some acidity to prevent infections. She has a patient who drinks alkaline water but she said b of c works just as well.

The cause is more difficult to establish, but I think it was because I hadn’t taken any zinc for 4 days which is unusual for me. I only take 15mg which I find is just the right dose. As with everything too much can cause the same symptoms!!

Anyway, that’s my two penny worth, but I’m really pleased for you that you have found a good GP at long last.

M x