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[Pippa52]

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Re: Too much estrogen or not absorbing ?
« Reply #188 on: August 10, 2022, 09:20:28 PM »

joziel re your post ....''That's great Pippa! So, do you go back to see him in 4 weeks time? It must be really reassuring to have had someone tell you it's okay and although it feels bad and distracting, you're not going to collapse or anything...

How does he know that your blood pressure comes down soon afterwards? Are you measuring it at home? I feel like mine is constantly too high. My fingers feel tight, a bit like rubber gloves blown up a bit... my feet and ankles feel trembly and twitchy and I feel like there is something on my back or across my back, some constant pressure. When it eases, it is sooooo calming and relaxing and I think 'wow, this is how I used to feel all the time....'.  I don't think the heat helps either, I'm sure being hot increases your blood pressure and it was really hot today''

I was told to take my BP morning and evening before seeing him when I was not getting symptoms of high BP or fast heart rate to compare it to the episodes and also to take it when I feel it is high or if I am having tachycardia and monitor it over the next 10 - 15  minutes afterwards.  It goes up to 180/91 or so and once 190/91 but all times within 5 - 10 minutes it returns to normal (120/80 or lower for instance the other morning it was 111/60 - I have always had really good low BP which is why these episodes concerned me so much)  He explained to me this is not high blood pressure as such it is just the effect that the oestrogen changes are having on my body. Yes hot weather can definitely raise BP a bit and also in the heat the blood can get a bit thicker so harder for the heart to pump round which is why staying well hydrated is so important he said. xx

[joziel]

Very interesting! Although I am left thinking that they might not classify it as high blood pressure, but it's not possible to live like this permanently - whether or not any doctors appear to be concerned by it    So I hope you do see everything settling down now Pippa.

I don't know how you've managed to take your blood pressure so much without ending up a nervous wreck. I hate the idea. In fact every time I think 'am I still pulsing?' it's enough to make me poop myself...  Let alone that horrible feeling of the blood pressure machine tightening and worrying what the result will be and trying not to watch all the numbers, and then the stab of fear when you let yourself look and it is high  which causes a rush of cortisol and adrenaline, and then comes the frustration with yourself because that means it's only going to get higher    oh good lawdy.... who'd have thought how much I could overthink taking my blood pressure, I give up with myself 

I don't think mine is coming down, at least maybe it will now start to, since I stopped estrogen - but really it's just ongoing and constant now, which has been a change over the last week or two before which it seemed to be happening only at night.

I guess the good news is I don't have any low estrogen symptoms again yet   

[Pippa52]

Joziel …. I hear you I really do re taking BP. Over the years I never have taken my BP as like you it freaked me out same as heart rate. I truly did not have an option but to do it recently as the info was needed or I would have had to wear a 7 day machine thing plus it was suggested putting a loop under the skin which records it 24/7 with a procedure which I wanted to avoid at all costs if possible. Bizarrely now I have done it quite a lot the fear is dying down and also having been told by the consultant that I don’t have high BP I feel more relaxed about it all. I guess knowledge is power in that at least he has it all recorded on my notes as proof of the readings . I don’t have to take it any more now just have it checked at HRT check ups. That being said I totally understand how you feel about .. it is worrying and scary when you just don’t know what is going on with your body Really glad to hear you have no low oestrogen symptoms that is great news xx

[joziel]

Thanks Pippa. Hoping you have a good night and start to see the nightmare end 

I am still pulsing away, pretty constantly. For some reason I feel it now mostly in my feet which are tingling almost. It's actually hard to concentrate on what I'm doing with my feet tingling and pulsing like this! I end up jiggling them just because twitching them helps me be less aware of the tingling.

The estrogen most definitely has to have left my body by now. So this is not an on-off thing. However it didn't start instantly I started estrogen either so perhaps I have to give it some time.

I am loaded up on vitamin c 4x daily (natural antihistamine apparently), quercetin x2 daily (natural mast cell stabiliser), L-glutamine (natural anti-histamine) and have had 3x DAOs today before meals (extra help for processing histamine). Plus utrogestan is supposed to be an anti histamine and I have 2x of those every night    Surely that lot should do the trick!?

[joziel]

Arrrggg. This isn’t getting any better. In fact it’s just ongoing and constant. I am worried my bp is dangerously high especially at night.

Maybe I should phone the dr tomorrow and ask for some bp meds. Otherwise I don’t know if I’m going to end up in hospital to control this.

I don’t know how I can then tell if I’m feeling better due to meds or estrogen but perhaps once I’ve stabilised I can wean off again.

It’s all a nightmare. It used to happen only at night I thought but now I think it was happening during the day too just less so I wasn’t as aware of it.

I’m a bit worked that bp meds will have their own side effects. Does anyone know much about that ?

[Marchlove]

Hi joziel

So sorry you’re feeling horrid still. I’m not sure if your doctor will just give you blood pressure meds without out you monitoring your BP for a week.

It doesn’t sound like a histamine thing with the amount of natural antihistamine’s you are taking, so what is causing it!

I just came across this.

http://www.hormonesmatter.com/blood-pressure-progesterone-mineralocorticoid-receptor-mutation/

Apparently in some women with a certain gene mutation progesterone can cause high blood pressure.  I’m not saying this is you but it’s something to consider.

Are you taking it cyclically? In which case I wonder if your BP drops when you take a break?

Could you perhaps see the same cardiologist as Pippa, who sounds very knowledgeable and lovely.

M
x

[joziel]

Thanks march. I doubt I live anywhere near Pippa and at the moment the thought of just driving to the doctor is hard let alone flying anywhere.

I don’t think it’s progesterone reading that:

“For women who carry this gain-of-function mineralocorticoid receptor mutation, high blood pressure emerges early, before the age of 20 and, for all intents and purposes, is refractory to the normal lifestyle changes and many medications that reduce blood pressure, except perhaps diuretics. The high blood pressure often becomes severe during pregnancy. It may also become severe with any drug that increases progesterone or decreases aldosterone including with oral contraceptives, synthetic progestins (medroxyprogesterone, micronized progesterone, prempro and related), ”

I’ve never had ongoing high blood pressure before HRT. I’ve been on levonorgestrel and desogestrel almost all my adult life with no change in blood pressure.

I could stop utrogestan and switch back to desogestrel but im a bit reluctant to make such a big change  when I don’t seem to fit the above and body identical progesterone is much better for me. And when I ended up in my current mess of very low estrogen due to desogestrel. But I could try it for a few days just to see if this stops I guess. Although… maybe that would just be a coincidence and time would have passed. I’m not sure what to do.

[joziel]

PS I’d been thinking about the genetic thing but in relation to estrogen. My maternal grandmother lost many babies during pregnancy to blood pressure related stuff - not sure if pre-eclampsia - and estrogen is high during pregnancy.

It happened when I took a combined pill with estrogen at 21yo. But I didn’t take it very long because as soon as I felt like this I just switched to a POP.

I’ve taken HRT much longer and feel like my body has got itself into this state and can’t stop or get out even tho the precipitating factor has gone. But I was taking HRT for 3-4wks before this all started so maybe it will take that long to stop… I hope not.

I have a lot of other estrogen sensitive stuff like endo…

Although I’ve stopped the HRT my own body is now making estrogen again we know. But this is a good thing because I also need it!

And with the mast cells I think it can take a long while to quiet them down with all that, if it is histamine it again might not be as simple as just taking those supplements and feeling better a day later. I could add in some type 1 and type 2 anti histamines as Tina peers suggests….

[Marchlove]

Very difficult for you joziel.
I’m presuming then you are on continuous.
Perhaps it’s just the micronised progesterone your body doesn’t like, or even the fillers.
If it was me, I’d give it a go, or try 100mg for a few days first to see if anything positive happens.
At least you could rule it out. X

[Marchlove]

If, and that’s a big if, it is one of the fillers say, it might be the soy in Utrogestan

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1181821/

Or it might not be that at all x

[joziel]

I've phoned my GP and left a message telling her what's happening, which has been emailed to her. But she might not get it until Monday because she has a full surgery today apparently... In my message via the typing away receptionist, I asked if she thought it might be a good idea for me to have a referral to cardiology. I don't think they will put someone on blood pressure meds if they have had fine blood pressure all their life, are slim and healthy - and then suddenly acutely get what I have. And I don't think I want to consider BP meds at this point, long-term. That isn't treating the cause. So maybe checking my heart out and a chat with a cardiologist is a good idea.

I'm not allergic to soy in any other way, I've eaten it all my life. I've always eaten tempeh and soy products off and on.

I'm a bit stuck with the progesterone idea - I need progesterone to suppress endo. (Yes, it's continuous at 200mg.) So I can't not be on anything, or I will be hit by heavy periods and endo pains. If I go back on desogestrel (which I've been on for 9 years without this happening) I will end up with low estrogen again, although perhaps I could do it for a few weeks without that, just to test the progesterone theory. At the moment it's premature to change anything having only stopped the patch 36 hours ago.

Besides, it doesn't fit with the picture in the article marchlove, where they describe someone who has had high blood pressure from a young age who gets it worse if they take any progesterone or progestin, including utrogestan. Because I've been fine for 9 years on levonorgestrel and another 9 years on desogestrel and never had these blood pressure symptoms before.

I wasn't on any hormones for 5 years from 30-35yo and didn't have these symptoms.

The only time I've had anything like this, was on a combined pill - Microgynon. I was a uni student. I have memories of lying on my bed in my student accommodation, feeling like I was pulsing at night. And of sitting in the library, trying to write a paper on the computer there, feeling throbby and weird. I switched to a POP which had the same progesterone (levonorgestrel) as that combined pill. The blood pressure and pulsing stuff went away shortly after I cut out the estrogen. I can't remember how long it took to go, I really wasn't that bothered about it at the time because I knew it was the pill and that if I stopped, it would go away - and there are many other ways to not get pregnant besides a combined pill, so I didn't need it...

So I'm pretty sure it's the estrogen. With the HRT, the symptoms also got worse, the more estrogen I took - and better, the less I took. Until these last few weeks where my body has just gone into feeling like this all the time. Once I am through all this for now(!) I need to figure out what the heck is going on because at some point in the near future I will probably need estrogen again. I think I might need to be ridiculously gradual about phasing it in and perhaps never get higher than 25mcg or some low dose.

I am pretty angry about the gung-ho attitude from the meno doctor about just casually increasing it, even after I told her I went to A&E with these symptoms... These big fluctuations and (for me) huge doses have just created all this, I think.

[Marchlove]

As you say you haven’t been off the patch that long so worth waiting a bit longer.
I think a cardiologist would be a good idea, hopefully one with knowledge of sex hormones, though don’t expect there’s many of them about.

As you do rightly say you need to know the cause and not just have a sticking plaster with BP meds!

It probably it the estrogen as you say and taking a minute dose would be the way to go.

Just have a look at the other fillers in Utrogestan before you dismiss it entirely, to see if there’s any link with BP.

You’ll find an answer for sure x

[Pippa52]

joziel - whereabouts are you in the UK?  The cardiologist I saw is fantastic and works from London and Kent.   You  may well be the other end of the country but thought I would ask - feel free to pm if you want to.  Also just to say having seen the consultant although I am still getting  the symptoms it's taken the worry of not knowing why I was getting the  high BP spikes and other symptoms away which is definitely a big plus x

[joziel]

The lovely GP I saw called me back just now. She is going to refer me to the disrhythmia clinic. She also wanted me to do blood pressure readings 2x daily ARRRGGG     What time should I do these? And should I attempt to capture what is happening through the night??

The irony of all this is that no one is going to help me unless I prove I have a blood pressure issue (claiming pulsing hands and feet probably isn't enough  ) yet when I do the test and it is high, I freak out 

I do feel like the blood pressure is the main issue and the heart palps would go away if the blood pressure was normal. I think that because the Kardia device told me I had 'Sinus Rhythm with Wide QRS' and that one possible cause of that is high blood pressure....

I'm just a bit concerned no one is going to be thinking 'hormones' in all this.

[Pippa52]

The lovely GP I saw called me back just now. She is going to refer me to the disrhythmia clinic. She also wanted me to do blood pressure readings 2x daily ARRRGGG     What time should I do these? And should I attempt to capture what is happening through the night??

The irony of all this is that no one is going to help me unless I prove I have a blood pressure issue (claiming pulsing hands and feet probably isn't enough  ) yet when I do the test and it is high, I freak out 

I do feel like the blood pressure is the main issue and the heart palps would go away if the blood pressure was normal. I think that because the Kardia device told me I had 'Sinus Rhythm with Wide QRS' and that one possible cause of that is high blood pressure....

I'm just a bit concerned no one is going to be thinking 'hormones' in all this.

joziel - that's so good you re being referred that is great news.  I understand about taking your BP and how you hate doing it and why as you know but one option maybe could you get your husband to write down the reading for you when it is done so that way you won't have to see it at the time?  I was told to take mine morning and evening and 3 readings each time if that's any help.  I was really scared when I saw my reading of 190/91 having always had low blood pressure in the past so the relief of seeing the cardiologist and him assuring me it was not dangerous as it was only a spike has been amazingly helpful. It might be a good idea to capture a reading when you have symptoms at night - I did - as then they can compare them.  Anxiety does push it up of course too.  I was told to sit quietly for 10 mins each time before taking the readings morning and evening too and I did Kardia readings when my heart was going fast as well.  It appears my problems most likely are due to hormones plus the fact that he has seen several other ladies with the same problem since the HRT shortages and them having to chop and change medications and doses so it  means you could well be the same but so glad you are going to get it all checked out I honestly think it will really help you.  Knowledge is power as they say.  Fingers crossed for you. xx