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Author Topic: Really struggling with extreme hormone sensitivity  (Read 2799 times)

LJB12

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Really struggling with extreme hormone sensitivity
« on: November 22, 2018, 05:04:00 PM »

I had a bilateral salpingo oopherectomy in Dec 2015 and treated with 75mcg Evorel patches, testosterone gel, mirena and vagifem. Until start of October this was fine but then fairly suddenly I started feeling terrible - a combination of anxiety and physical symptoms. Saw a specialist nurse in Mr Panay's clinic who immediately diagnosed low estrogen and told me to cut up a patch into 3 to get to 100mcg. This was Thursday last week. By Friday evening / Saturday morning I felt 250x better - "back to normal", and it was great. I was shocked at how quickly and dramatically the estrogen had worked. 

Yesterday afternoon I started feeling weird again but put it down to a bad day. Went to the gym for Personal Training and it got really bad - ended up nigh on in tears. Came out, shut down my Facebook and Instagram accounts, cancelled my gym membership and just felt so very very sad. Physical symptoms also back quite strongly. At 3am I woke up as couldn't sleep and I wondered if my patch had stayed on because I suddenly realised the symptoms were familar. This morning I got up and sure enough the 25mcg part had fallen off. I have replaced it but still feeling terrible now, physically and emotionally. 

I also expressed the upset to a "friend" before I had realised that it was likely the estrogen who told me I was overcomplicating my life and should basically just shut up. I feel so hurt. True colours, eh? 

Is it usual for estrogen to have such a dramatic effect? Anyone else so sensitive to hormones?
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Ladybt28

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Re: Really struggling with extreme hormone sensitivity
« Reply #1 on: November 22, 2018, 05:21:26 PM »

Hi LBJ12 - yes - it can be like going on a roller coaster once levels drop and they can drop quite dramatically and quickly.  However, although symptoms can subside quite quickly on increasing doses, the real problem is that it can take awhile for it to "level out" and for the dose to increase enough to keep the symptoms at bay on an ongoing basis without any dips. The see saw effect is quite common on starting a new regime or trying to balance an old one which seems to have gone out of wack.

The usual time frame for "settling" is always quoted as 3 months.  Some people respond quicker and others it takes much longer and it is so random because we are all so different. However, I would say that hoping that things would settle within a week or even 2 is unlikely.

You are probably going to experience the ups and downs for at least a month and possibly longer.  Losing patches doesnt help either - has that been common for you?  You have had them since December 15 - are they a rather "non-sticky" batch?
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Perinowpost

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Re: Really struggling with extreme hormone sensitivity
« Reply #2 on: November 22, 2018, 05:43:01 PM »

Hi LJB12

Yes.  I know immediately when my patch has run out and always feel better within 2 hours of putting a new one on x
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CLKD

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Re: Really struggling with extreme hormone sensitivity
« Reply #3 on: November 22, 2018, 06:11:39 PM »

 :bighug:
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LJB12

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Re: Really struggling with extreme hormone sensitivity
« Reply #4 on: November 22, 2018, 06:49:59 PM »

I seriously don't feel like I can cope and I'm panicking.

I'm so frightened. This is like pmdd all over again.
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Ladybt28

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Re: Really struggling with extreme hormone sensitivity
« Reply #5 on: November 22, 2018, 07:42:26 PM »

LJB12 - I know its horrible but please stop panicking (easier said than done I know cos I've been there) because panicking wont make the feelings go away and are likely to make it worse.  Unfortunately you cannot make the absorption of the oestrogen to get the levels back up go any quicker either but although you feel like you can't cope you most certainly will because it sounds like you have been through similar before

Maybe try a technique that CKLD talks about which is breaking your days into "small chunks" so think "I'm going to get to lunch time and everything will be ok" - then "if I can get to tea break - everything will be ok" - "its nearly bedtime - everything is ok".  What you really need to accept and try to persuade yourself is that the timeline for levelling this out is 2 weeks and that you have to stick with it because otherwise.. what is the alternative?  Stopping altogether is probably not an option you will feel much worse but you cant make the hrt work any quicker either - you have to give your body time to adjust.

Its a really nasty long tunnel but you need to get through it to get to the other side.  Keep posting here each day so that you can vent about how horrid it is - there is no need to be frightened though, loads of us have been there and we are all with you.
 :foryou:



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Rhiner

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Re: Really struggling with extreme hormone sensitivity
« Reply #6 on: November 22, 2018, 10:32:44 PM »

Hi LJB,
I too had BSO 2 years ago and around 6 months after settled on 75ug estrodot I too experienced very similar symptoms, anxious, feeling faint etc.  I rode it out and it took around 6 weeks to feel normal again. No idea why it happened and touch wood been OK since. At the time I changed from 2 patches of 50 and 25 which I changed on different days to a full 75, that is the only difference. So I am very sensitive to hormone changes too.
Rx
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LJB12

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Re: Really struggling with extreme hormone sensitivity
« Reply #7 on: November 23, 2018, 05:17:04 PM »

The specialist nurse said within a couple of weeks I'd have noticed an effect. Noticed the same day and was brilliant until 5 days later when I crashed to worse than I was before 😔
She said go to 100mcg from 75mcg, which worked for 5 days but is now not working too well - would you go to 150mcg to see what happens?
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Ladybt28

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Re: Really struggling with extreme hormone sensitivity
« Reply #8 on: November 23, 2018, 05:40:22 PM »

Personally I would wait 2 weeks at a time LJB12, some on here may even suggest a bit longer.  You do need to be careful because too much oestrogen can cause the jitters and so you need to increase gradually to find out where the balance point is.
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racjen

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Re: Really struggling with extreme hormone sensitivity
« Reply #9 on: November 23, 2018, 07:51:23 PM »

Yes, I definitely think that hormones can have frighteningly extreme effects within a few hours. I experienced significantly increased feelings of panic and depression within hours of having a Mirena fitted. And progesterone withdrawal can turn me from a relatively normal person to a weeping irrational wreck in the space of half a day. I haven't had that effect with estrogen (as far as I know) but I think generally the effect of hormones is massively underestimated - they are, after all, the body's messaging system, and messages need to get sent out pretty fast so the carriers are pretty powerful.
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Kathleen

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Re: Really struggling with extreme hormone sensitivity
« Reply #10 on: November 23, 2018, 08:31:39 PM »

Hello ladies.

The power of hormones is truly amazing.

I am trialling a longer cycle atm so I have been using Utrogestan vaginally for nearly twelve days but will be on Oestrogel only for the rest of the month. I have also just increased my pumps from two to three and will ask my consultant if I can go to four if necessary. 

I wish I knew which hormone was to blame for my difficulties and I am envious of  ladies who can distinguish between them. Up to now I have always taken a low to medium dose of oestrogen with continuous progesterone so this new regime may at least help me work out which hormone is the more problematic and if I am indeed progesterone intolerant.  Anything I learn I will of course report back. This whole thing is so exasperating!

 Btw I overheard a customer in  Boots tell the pharmacist that she is also very sensitive to hormones just like the previous female customer!  That's the problem in a nutshell I suppose, we are all very sensitive to hormones!

Wishing everyone well.

K.
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NorthArm

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Re: Really struggling with extreme hormone sensitivity
« Reply #11 on: November 24, 2018, 12:06:55 AM »

Hi LJB - is there any way you can be prescribed a 100mcg patch? At least that way you won't lose the other little bit and you'll be able to see if 100mcg is enough...

I'm sensitive like you too, when I recently went up to 75mcg from 50, I noticed the difference within an hour. And when I start the prog phase, I feel that hit very quickly too, within three days I'm a mess.

I'm trialling a longer cycle for the next couple of months, three and a half weeks in (no prog) and I'm finally feeling a bit more normal - ie the anxiety is gone, and I'm actually feeling something akin to hope xx

If I were you, I wouldn't worry about cutting patches into pieces, just get the script for the 100. If it's just trialling it for now, a clear surgical tape / cover such as opsite will keep it all in place - that stuff does not come off easily xx
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