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Author Topic: HRT Can sympthoms get so much worse before getting better?  (Read 8020 times)

Alicess

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HRT Can sympthoms get so much worse before getting better?
« on: September 18, 2019, 05:32:16 PM »

I desperately need some advice as I feel I can't go on much longer. Every time I try bioidentical hormones my symptoms are getting much worse. I've
tried patches and estrogel and every time my hot flushes,  sweating  and all other symptoms went through the roof. My French physician back then told me to increase to 4 x100 mg and  then 8 pumps of Estrogel but it didn't matter. Low or high dosages gave the same result. Last time on Estrogel I became very hot and sweating after only one hour after application. My skin started to feel extremely dry and burning. After stopping my hormone levels didn't return to before I started but remained low What frightens me the most is that it's aging me dramatically. Besides the sagging I have lost most of my subcutaneous fat ( and my theeth) I look like a zombie now. My face is constantly red and flushed and even my pores have sagged dramatically. My hands look so old. Sweat is dripping of my face.On some days in the cycle I have trouble speaking like my muscles around my mouth are not working properly  and my upper lip is hanging on my lower lip. Other days my face is cramping. Walking is difficult, muscles don't seem to work as well in my legs either. And then the anxiety, depressed feeling, brainfog, confusion and a feeling of derealization.insomnia etc, etc...

I've also tried Premarin ( didn't know it was horse urine back then) and Livial but to no avail. The only day I felt some relief with any treatment was around ovulation time.

I am 53 and I stil have a cycle with the same symptoms getting more or less on the same days. I'm afraid it has something to do with being on birth control from the age of 14 till I was 48 when I was put on bioidenticals. It put me straight into  the ER as my leg started swelling and it put me straight into menopause. In less then three weeks my breasts sagged and my ears started ringing. Then I lost 1 cm of hair along my frontal hairline and
half of my remaining hair on my head.  I need estrogen as I am my wit's end. I am responsible for my dad who has Alzheimer's so there isn't much choice then to keep going on but I am barely functioning anymore. I have to do something as the birth control I am on doesn't help at all anymore.

The last specialist I went to ( a professor at the university no less) asked me if I have ever tried a estrogen dominance diet and suggested a depro-vera injection ( without any estrogen alongside)

Could it be that I have to stay on the bioidenticals even if it gets so much worse? And  I need more time then usual before I find some relief Could. it be remotely possible that there is any truth in estrogen sensitizing progesterone receptors first before estrogen receptors? And that's what's going on? As you can tell I'm grasping at straws...

I'm sorry if I'm rambling, I'm so tired I can't even put on a straight face or pretend.

I would really, really hear your experiences.








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KiltedCupid

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Re: HRT Can sympthoms get so much worse before getting better?
« Reply #1 on: September 18, 2019, 06:03:00 PM »

Alicess - wow, you're really being put through the ringer!

I can't help much but it does sound like you're not absorbing the transdermals properly. Have you tried (other than Livial and Premarin) tablet Oestradiol? Livial is a very low dose anyway, although not Oestradiol, maybe the dose was just too low? It sounds like your body has literally been plunged from high synthetic oestrogen to virtually nothing. The synthetic EE is thought to be between 3-5 times more potent so even on a high absorbed dose of bio oestrogen, it'd be nowhere near what you were used to.

Dangermouse seems to have good knowledge on progesterone receptors, hopefully she'll see this and can help with that part of your query.
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Tracey E

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Re: HRT Can sympthoms get so much worse before getting better?
« Reply #2 on: September 18, 2019, 06:11:54 PM »

Hi Alicess, I've had to come off bioidentical HRT (Estrogel & Utrogestan) as it made me feel so ill. Palpitations, stomach upset, bloating which led to GERD. I was still getting hot flushes, dryness down below, fat deposits on my thigh, a achey feet/legs and hairloss. Not good for me at all, I've been off it since Saturday and I feel like a new person, my head is clearer, bloating is going and palpitations dissipating. I've not had any hot flushes during the day, just one at night. I have also lost 3lb in weight since coming off it.

I would never advise anyone to leave off HRT but when the negatives out weigh the positives maybe it's time to make a change. Take care. X
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Alicess

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Re: HRT Can sympthoms get so much worse before getting better?
« Reply #3 on: September 18, 2019, 06:38:32 PM »

Hi KiltedCupid, thank you for your response. Yes, I have tried oral tablets but I grew a beard! I think you are right that synthetic estrogen is much more potent and that's why I plunged so deep. I don't understand why the synthetic estrogen isn't working anymore..

Hi TraceyE,  yes, I have read your story and I can relate. Unfortunately, If I stop it gets even worse. It seems that I don't have much hormones of my own anymore as it's been surpressed for so long. Strange how hormones can make everything worse as it's suppose to add to our own hormones.
I wish you well x
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KiltedCupid

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Re: HRT Can sympthoms get so much worse before getting better?
« Reply #4 on: September 18, 2019, 06:56:09 PM »

Alicess - have you seen an endocrinologist? Your symptoms seem so drastic it might be worth asking for a referral.
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Alicess

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Re: HRT Can sympthoms get so much worse before getting better?
« Reply #5 on: September 18, 2019, 07:15:57 PM »

Yes, I have seen an endocrinologist but everything is fine. The couldn't find anything that would explain my symptoms. It's the extreme reaction that frightens me. I sometimes wonder if my body doesn't recognize bioidentical estrogen anymore as its been surpressed for to long. Or displaces them. Hence my question about progesterone receptors. I did have an urine estrogen metabolic test en there was a surplus of estrogen in my urine. As if my body is flushing everything out.
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dangermouse

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Re: HRT Can sympthoms get so much worse before getting better?
« Reply #6 on: September 18, 2019, 08:05:06 PM »

If you're still in perimenopause and oestrogen is making you feel worse then I would stop it and let it all settle. You could be having migraine type symptoms (it's often not about pain but odd neurological issues) caused by too much oestrogen that your naturally producing. If you get symptoms that feel like over stimulation then it's likely high or surging oestrogen that's the cause.

Too much progesterone would be more drowsy, depressed feelings.

There is a theory that receptors can naturally be put in a desensitised state when a hormone is too dominant, and then adding in the rebalancing one can cause an immediate reawakening and worsening of symptoms until they fully rebalance. This doesn't sound like your symptoms though.
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Alicess

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Re: HRT Can sympthoms get so much worse before getting better?
« Reply #7 on: September 19, 2019, 07:39:52 AM »

Hi Dangerous, I do feel drowsy and tired depending on the time in my cycle.  I feel it is lack of estrogen hence the sagging and aging so quickly.
I wonder if it could be that some women feel worse at first on estrogen because it's reawakening the estrogen receptors. According to a book I've read the estrogen peak around ovulation sentisizes progesterone receptors on cells all over the body getting them ready to accept progesterone (receptor anticipation).
I can't explain the worsening of symptoms as HRT suppose to add to are own hormones. I did stop HRT but my symptoms are worse then before I started. So something has changed.
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Tc

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Re: HRT Can sympthoms get so much worse before getting better?
« Reply #8 on: September 19, 2019, 08:56:52 AM »

Alice. I wish I could offer some advice but I am in a similar position to you. I am so sorry. I sympathise whole heartedly.
I could've written most  of the things,you have said 

I was put into surgical meno a year ago at 53.
Before my op. I had no symptoms of peri.  . It was thought that at my age  ovary removal should  not have the pronounced affect it would in a younger woman. But it did. . Immediate and very severe and pronounced symptoms, the whole lot on the list and more. So why such a huge crash.?  . It was mentioned to me by meno nurse that the ovarian cyst I had mightve been delaying menopause as some can produce hormones or interferes with ovarian function.  So the drop was from a greater height.   I mention this as I'm wondering whether you   being on the pill may have "masked" menopause which is  why you feel you went  into it overnight coming off the pill. So like me. You fell suddenly from a great height.
When this happens in younger Iwomen it is widely accepted  it leads to more widespread and severe symptoms which need higher doses of replacement  to combat than are needed in peri

So maybe this imakes replacement more difficult. I was allowed to crash and then given a 50 patch. I should have been started higher. .but I have got worse and worse on HRT. I'm now on 200 patch and tried eastrogel but I don't absorb. Plus , I have a very strong horrid reaction to oral progesterone. 

I can only describe how I feel as realy ill.   and the changes to my appearance over the last year have been many and drastic.  So i realy understand how you feel.  . It is overwhelming.

Blood tests show my eastrogen is  low. And hasnt gone up on high dose HRT. I feel as though I'm getting absolutely nothing from the patches. I have lots of symptoms of low eastrogen and it sounds to me as though you do too.

But is it as simple as "non absorption". ?
It's an interesting question you raise about whether some of our bodies dont know how to process  exogenous hormones. However identical they may be. It certainly feels as though my body either doesnt know what to do with the hormones I'm putting in or is rejecting them
 maybe as you say receptors come into play. But what can we do about that?

Sorry it's long and I'm speculating so much but your post realy resonated with me. I too am desperate for answers. I hope you get some. I will watch with interest.

Best wishes Alice. Xx
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Alicess

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Re: HRT Can sympthoms get so much worse before getting better?
« Reply #9 on: September 19, 2019, 11:05:53 AM »

TC, I really feel for you and I think you're right, we are in the same predicament. I don't mind at all if you speculate, please do! And I don't mind a long story either as it gives me insight in what you're going through and I think it will help us both not feeling so alone.
Contrary to you I immediately feel worse when I try bioidentical hormones. I did stop taking the pill before all this happened but it didn't make me feel this bad. I believe it has lowered my own estrogen level instead of increasing it. I sometimes feel that my body is seeing the exogenous estrogen from HRT as it's own and act accordingly if you know what I mean. It should add to my own hormones but it seems it's replacing them.  I find that very scary.
 
Yes, I firmly believe very low estrogen is causing our symptoms.. And progesterone, especially Urtrogestan, isn't making it any better in your case.

I'm losing hope. If always thought I could find a solution but nothing has worked, it only made it worse. I'm contemplating trying Patches and applying Estrogel on the vulva as someone had great results with that route. But what if everything gets worse again? Then, for me, there's no return.

Lke you I'm wondering if it's just non-absorption. Something else must be going on or you would feel some change, wouldn't you? If I remember correctly you're SHBG is also very high? But even if it's high there should be something left for your body to use. Oral bioidentical  tablets are also bound by SHBG and bioavailability is low, I believe, because of first pass through the liver. Maybe you could discuss low dose ethinylestradiol tablets with a progestin tablet as a possibility at your app.? Ethinylestradiol is more potent and isn't bound by SHBG.  Birthcontrol pills are usually to high and also the progestin in it is very high.  Don't lose hope yet, there are still options.

Alicess 🌷








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Tc

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Re: HRT Can sympthoms get so much worse before getting better?
« Reply #10 on: September 19, 2019, 03:00:37 PM »

Thank you Alice I will look into the ethinylestradiol.  Yes my shbg has gone up.

About it seeming like the HRT is  replacing  your own hormones, do  you mean sort of over riding them and just cancelling them out. ? I know the pill is strong enough to do that but I dont believe HRT is strong enough to override a natural cycle. I've often seen women on heer say it's the other way round. The natural cycle sometimes overrides the HRT in peri.

What were your last bloods? Have you had Testosterone tested?

I've never not been on hrt since  6 or 8 weeks after surgery so I dont actually know if Ifeel worse on it than I would without it.  Certainly I would feel better without progesterone. Hmm that's set me thinking but that's another post.

I'm a bit concerned about the idea of  using eastrogel on the vulva. I've never heard of this.
Do you know more about it?

I know what it's like to feel so desperate for something...anything to work.

Tracey. May I ask you a question please.
You said when you came of HRT dryness improved. ?  Do you think the progesterone made the dryness worse?

Hope you dont mind me butting I  with a question Alice.

Xxx
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Tracey E

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Re: HRT Can sympthoms get so much worse before getting better?
« Reply #11 on: September 19, 2019, 03:46:45 PM »

Tracey. May I ask you a question please.
You said when you came of HRT dryness improved. ?  Do you think the progesterone made the dryness worse?

Hope you dont mind me butting I  with a question Alice.

Hi TC, If I analise it I would say I was equally as dry on the Estrogel. Neither the Estrogel or Utrogestan improved that unfortunately. In fact I'm probably more moist since I came off both. I believe dryness is a side effect of the Estrogel. :(

TC how are you feeling today? X
« Last Edit: September 19, 2019, 04:35:36 PM by Tracey E »
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Alicess

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Re: HRT Can sympthoms get so much worse before getting better?
« Reply #12 on: September 19, 2019, 03:50:57 PM »

No, I don't mean that HRT is overriding my own hormones, as you've mentioned that's what the pill does. It feels like they are cancelled out. Otherwise I can't explain why my estrogen levels are lower and symptoms worse after I stopped HRT? Or it could be related to FSH not being surpressed anymore?
It's so complicated!

I don't know when your overaries are removed how it effects your FSH?  Should it be high or low?

My testosterone is very low, my SHBG very high > 200  so no free testosterone. I have tried testosterone but, again, made everything worse.
You've tried testosterone as I remember? Did you feel any benefits?

Did you ever try a progestin instead of Urtrogestan? Progestins can sometimes be a better choice as some of them have some androgenic activity while Urtrogestan does not.

I am rather desperate so willing to try anything, even Estrogel on the vulva.

https://www.menopausematters.co.uk/forum/index.php/topic,45128.0.html

Don't mind you butting in X
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AG

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Re: HRT Can sympthoms get so much worse before getting better?
« Reply #13 on: September 19, 2019, 07:35:27 PM »

Hi Alicess,

Reading your post, being in late peri with very irregular periods myself for about 2 years, about issues with walking etc I recognised symptoms I started getting when starting HRT myself a few weeks ago. Initially, I tried patches and Utrogestan, then Femoston 1/10 but have for now stopped with HRT since it made me feel much worse in many aspects. HRT helped with a bad patch of hot flushes and mood for me but I started getting lots of other things that worried me like the coordination completely gone, and similar stuff you described. My thyroid function is also borderline underfunctioning and I am going to see a specialist next week. If I get any advice what could be the cause of the coordination etc issues I will report back on this. I hope you find something that helps you will all these symptoms so that things improve. AG
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Hurdity

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Re: HRT Can sympthoms get so much worse before getting better?
« Reply #14 on: September 19, 2019, 07:49:34 PM »

Hi Dangerous, I do feel drowsy and tired depending on the time in my cycle.  I feel it is lack of estrogen hence the sagging and aging so quickly.
I wonder if it could be that some women feel worse at first on estrogen because it's reawakening the estrogen receptors. According to a book I've read the estrogen peak around ovulation sentisizes progesterone receptors on cells all over the body getting them ready to accept progesterone (receptor anticipation).
I can't explain the worsening of symptoms as HRT suppose to add to are own hormones. I did stop HRT but my symptoms are worse then before I started. So something has changed.

Alicess - my understanding is that oestrogen receptors are there all the time and are activated in the presence of oestrogen. However progesterone receptors (perhaps just in certain parts of the body?) are activated in the presence of oestrogen. Possibly just in the uterus - sorry a bit hazy on this. It would stand to reason re pregnancy though. The whole matter of hormone receptors is so extremely complex and involves very high level understanding of cell/molecular biology and biochemistry. The more I read the less I understand.

Sorry to hear you are feeling rough. Have you had hysterectomy and BSO? Also could it be tachyphylaxis rather than non-absoprtion - or have you had your oestrogen levels measured and confrmed as low. Sorry I've forgotten your story. I'm a bit confused as to where you are in menopause re natural periods if you haven't had hysterectomy?

Hurdity x
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