Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: Tempest on May 21, 2016, 11:46:41 AM
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Hi again ladies. I went away for a few days to try to calm down and just buckle down but the last 2 days have been hell!
Before starting the 2 pumps of Estrogel 44 days ago, I had very little anxiety. Now it is UNCONTROLLABLE. I wake up shaking, and am now in the last 2 days getting massive palpitations 3 hours after I apply the gel in the evening. I am literally on the ceiling! Also waking up with the shakes, which I haven't had for over a year since I had my surgery (I had this before in peri menopause).
This HAS to be too much estrogen, right? Shall I cut down to 1 pump tonight? Any advice is greatly appreciated. And sorry to be a pain!
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Hi sorry your feeling bad...I would go down to the 1 pump for a while till your body adjusts then try adding in a wee bit more in till you get to 2 pumps...building up slowly might be the answer...good luck xx
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Thank you keepgoing! I feel like I've literally thrown a bomb into the works! I think maybe going in at 2 pumps after having no HRT at all throughout peri and also over 1 year post BSO (I've also had TAH a few years ago) was just too much for my body to handle! I feel wired to the moon. I don't like this feeling at all! :'(
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Hi Tempest,
Sorry to hear you are not feeling so good! As I understand that you have had a hysterectomy and are on 2 pumps of Oestrogel? I have read somewhere else that ladies who had hysterectomies can benefit from adding progesterone to the equation and wondering whether you could benefit from a 100mg daily Utrogestan which may help with your anxieties. I was peri when I first started HRT so not too sure where I am in my journey (I have just turned 53) but am now using 37.5mg of estrodot and a daily dose of Utrogestan for me I take days 1-25 and then have a three day break to allow for the bleed but for you I guess could take them daily as you wouldn't have a bleed due to your hysterectomy. It's only a thought as my anxiety used to be bad before but I must say most days I feel really good! Massive hugs to you xxx :)
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Tempest, I also think this reaction might be from too much estrogen. The best way to find out is to go down to 1 pump /day and see whether you will feel better.
Keep posting! Hope you will settle soon.
Milamam
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Thank you Mother bean and Milamam! Yes, tonight I'm definitely cutting it down to 1 to see what happens. Horribly bloated too. Boobs are fuller but don't hurt, but definitely puffy in the face, feet and hands to a degree that i don't feel comfortable. It all reminds me so much of my peri days, and they were the worst! As I've said before, my anxiety went way down after I had my BSO, but was replaced after about 6 months with increasingly low mood, low energy and horrendous joint pains. If only I could find a happy medium! I guess that's why we're all here though, isn't it?
Hubby is at work today but we texted on his lunch, and he says that he has really noticed my anxiety has gone up, more so in the last few days. I thought I was doing a good job of keeping it to myself, but he's a good man and I think he notices things more than I realise!
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How were you on 1 pump and who suggested 2 :-\. If it ain't broke don't fix it ???.
24 hours without and then back to 1 pump?
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Does one need progesterone following hysterectomy :-\
I suggest doing a 'search' on this Forum for the product ! there are probably ladies with knowledge about the wheres/whyfores.
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One pump only tonight has to be worth a go. Good luck X
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Thank you CLKD and Trufflecat!
CLKD, it was the Consultant at the menopause clinic. She says I NEED to be on a 'substantial dose' as I can't possibly have sufficient estrogen due to going a year without anything following by BSO! My levels have never actually been checked. All I blinkin' know right now is that I never had this anxiety before! I'm going to cut it down to 1 tonight. Do you think I should miss a night, actually? I kinda feel that I want to just go down to the 1 pump without a break.
You see, I never actually had too many hot flushes in the first place! That wasn't my problem and why I wanted to try HRT. It was mainly the excruciating joint pains (which have improved on the Estrogel), and the low mood. I had a lift in my mood at first, but now it's gone out the other side and morphed into this incredible anxiety! Jitters, palpitations, feelings of going nuts, yes - it feels like peri is back again! And I'm LOVING the rapid weight gain! Not!!! I actually lost a decent amount of weight after my surgery, but now feel like a custard filled balloon (excuse the weird description, but that's what it feels like. I feel like a half set blancmange)!😭
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Sorry - what's BSO?
You may need oestrogen but go with how you feel, not what she thinks you ought to have :-\. Go on symptoms?
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Sorry, CKLD. BSO is bilateral salpingo oopherectomy. I have no ovaries, so all of the estrogen that I produce naturally comes pretty much from my adrenal glands. Tis not a happy situation!
I have hopped over to Hystersisters too and quite a few ladies there are coping ok on just 1 pump plus vaginal estrogen for their needs down below. I also note that in the US, the standard dose is lower at 1 pump, rather than the 2 we have as recommended as standard in the UK. Interesting!
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Hi Tempest - sorry to hear how you are feeling. I have never taken too high a dose of oestrogen so I've no idea what this feels like. It must be something to do with adding it exogenously ( ie from outside) rather than producing it yourself (endogenous) because during the menstrual cycle at ovulation levels are very high and likely to be much higher than from two pumps of gel - but of course naturally there are a whole lot of other hormones also churning about (not progesterone though at ovulation!).
Intuitively as you say and your specialist tells you that you would need a high dose because you've had BSO but perhaps in your case it might be instructive to have a couple of blood tests. In any case you have to go by how you feel. The other thing is to make sure your levels are high enough to help prevent osteoporosis - and I've lost track of how old you are (mid 40's?) - so a higher dose should be beneficial.
Maybe a patch would suit you better if you are getting a daily hit of oestrogen that is affecting you?
I am puzzled about the palpitations as I know that these are a sign of oestrogen deficiency - but maybe it's sometimes a heart stimulant too - although I don't remember reading this in the side effects. Does anyone have any information on this?
This is probably not much help as I'm just thinking aloud - sorry!
Hurdity x
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One pump works fine for me. I suffered from anxiety when on a higher dose of oestrogen and took it upon myself to try a lower one. I didn't feel amazing when I started with one but after a couple of weeks it was fine. It's a bit of trial and error to be honest but with the gel you can at least try different levels of the same product. After all we are just trying to get through the day feeling human
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Thank you again, Hurdity! I'm wondering if my problems could be because the the estrogen I'm adding in is unapposed as I am not adding progesterone? I know in theory it's not needed as I have had a hysterectomy also, but I've been doing my research a bit and it seems that it can lead to a situation of symptoms of estrogen dominance in ladies like me who have had TAH/BSO.
I did my one pump a couple of hours ago now and so far not getting that awful 'ramping up' feeling at the moment (fingers crossed)! The palpitations were hitting after about 3 hours, so we will see if that stays away. I do hope so! I'm off seeing my GP on Wednesday and he seems like a nice helpful chap who is new as a partner at the practice so I'll ask him to actually check my levels! I really feel it should have been done by now. Hubby is helpfully coming with me as he is off on Wednesday's from work, so he can support me as I feel a bit overwhelmed right now to be honest!
I'm actually 47, btw. I really do fear osteo. and want to try to do the best I can to protect my bones. One of the reasons I wanted HRT is because my energy levels had become so incredibly low along with the joint pain that I couldn't even take my daily brisk walking exercise anymore.
I'm also seeing the Consultant who did my surgery again in 4 weeks. I think he's going to go potty that I'm on HRT at all as he didn't want me on it. I got a copy of the letter yesterday from the Consultant at the menopause clinic that she sent to him, and she basically went at him big guns for not starting me on ERT post surgery, so I'm sure I'm in for a bit of a frosty reception! I don't really care though now as I have to live like this and surely deserve some quality of life!
I sent my email to Professor Studd btw at the end of last week and have yet to receive a reply after my request for a telephone consultation. I'm not holding my breath on that one!
I also read with great interest your reply to chattygal's question about patch vs. gel and dosage levels, and I'm thinking maybe I am one of the ladies who gets a LOT from the gel!
Chattygal - I'm very encouraged that you do well on 1 pump of Estrogel. I also, if my memory serves me right, think Dancinggirl does fine on either 1 or 1 and a half pumps? As you say, it's all about what gets us through the day!
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Just an idea- maybe 2 is actually not enough? You say you are a year post surgery, could it be that your levels have taken some time to drop to produce these symptoms and it's coincidence that you've recently started the gel? I'm only putting that idea out there in case backing to 1 pump doesn't help. You're "too much" symptoms sound very much like my "not enough" symptoms.
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I'm inclined to agree with Lizab. I was woken up with an electric shock type feeling this morning and my hot flushes are back. It crossed my mind that maybe I have become used to my 1 pump. Going to give it a few days and then may increase it.
Husband has a cold, so want to ensure that I'm not coming down with his bug before increasing.
How are your other symptoms?
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Tempest - in your case I do think blood tests may well be helpful because it is the only way to see how much oestrogen you are getting and because of your symptoms - which as Lizab says could be also be due to too little oestrogen. As I said before in your condition (total hyster with BSO) you should need a much higher dose due to the fact you are making very little of your own. One blood test won't tell you a lot as it varies according to time of day - but it would be a start especially as your levels should not be fluctuating. As it stands 1 pump isn't sufficient to protect against osteoporosis according to the general info (although of course every bit of oestrogen gives some bone protection).
The oestrogen dominance thing is an old chestnut not backed up by proper scientific evidence/trials. Its role in any quantity in post-menopause has not been established. Oestrogen "dominance" does occur during peri-menopause when there are anovulatory cycles ( no ovulation) - which can lead to heavy bleeding since progesterone is needed to oppose the oestrogen effects on the endometrium (womb lining). However the need to use progesterone to counter the effects of oestrogen elsewhere in the body is not consistently supported by evidence - although may help a very small proportion of women according to some sources. The information out there is usually biased and produced by those selling - guess what - progesterone creams - as in the link in the post below given by Mother bean.
I hope you're feeling better today :)
Hurdity x
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Tempest, I agree with Hurdity that blood tests would be a very good idea in your situation because you need to know how much oestrogen is getting into your bloodstream. I soak up the gel like a sponge and you could be similar but you need to find out first by having the blood tests because you then need to tailor your oestrogen dose. I need very high blood levels of oestrogen and have to keep it high all the time and you may also need to do this, particularly at your age. I very much doubt you need any progesterone but you might need to testosterone at some point in the future.
I think you might need to consider upping and splitting the Oestrogel dose to 1 pump every 12 hours to keep your oestrogen levels up - I have been doing this for a while now and it works really well. I certainly think that 1 pump of Oestrogel everyday is far too low.
Why on earth doesn't your consultant want you to take HRT, has he given you a very, very good reason? You are only 47 years old and have had your ovaries removed and he expects you to do what exactly? Live with all the debilitating symptoms for years on end and then end up with some dreadful condition caused by years of oestrogen deprivation? I don't get it. I thought the new NICE guidelines meant there would be consensus amongst medics but it seems we still have a very long way to on on this one.
Most importantly Tempest, please don't allow yourself to be taken off HRT by anyone and if necessary, find a doctor who will prescribe it for you. I know Professor Studd would happily prescribe it for you and your experience explains why so many women still have to go to him for help.
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Maybe the whole of the NHS has been advised to save money?
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I don't want to get into the whole HRT question because we have differing opinions. However when I had my hysterectomy there was a lady on the ward who had everything removed (including her ovaries). I can remember that she could not be discharged and had to wait until the consultant had signed off the prescription for her HRT patches. It was an undisputed matter of course because she had her ovaries removed. My neighbour also had everything removed shortly after her son was born and was automatically given oral HRT tablets before she was discharged from hospital.
It seems odd to me that nowadays women are having this surgery without the necessary HRT replacement being given. Without ovaries where are they supposed to get it from? ???
I only lost my womb and kept my ovaries so I did not expect to require it.
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Wouldn't it be lovely if, at the initial Consultant, that the Surgeon/Registrar talked to the patient about what follow-up treatments may be required - regardless of speciality? This to be discussed prior to the surgery? so that any questions that have arisen between the initial consult and admission can be talked through? Regardless of who will eventually pay for on-going treatment? What held up patient discharge in many instances was the need for notes to be written, prescriptions to be signed by the SHO/Registrar and the time it took for Pharmacy to dispense ::).
Of even further back than that: when a patient goes to the GP *they* discuss possible on-going treatments?
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Ha, when I went to my GP she said 'would you like a hysterectomy?' my reply was 'yes please'. 6 weeks later I saw the consultant who repeated the question and I repeated my answer. Job done.
Sorry Tempest, I have digressed this thread :-X
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Hi ladies! Thank you all so much for your help and support. Today has kinda been ok. I can tell my dose is needed though now at nearly tea time. I'm glad I dropped to 1 pump last night as I was fast turning into a gibbering wreck and I have been calmer today.
I have been discussing this with Hubby. We are going to insist on tests being done to check my levels. This guessing is just nuts! Apparently, this particular Consultant is a bit notorious for not putting ladies who have had everything removed on HRT. He doesn't like it at all! He actually told me if I walk enough, this should be sufficient to protect my bone density when I saw him in clinic at my 3 month review. I was rather dumbfounded to say the least.
When I had my surgery, it was all such a rush. I had the scan, and had the surgery 3 weeks later. To top it all, I had just buried my Dad a few days prior to getting the scan and was feeling really vulnerable emotionally. It all came as a huge shock all at once! I did have the presence of mind to ask both the Consultant and clinic nurse at that time about what would happen after surgery regarding HRT. The nurse I remember said 'ohhh, you probably won't need it'! I have no idea what kind of racket their running at that particular Gynaecology department but all I can say is that I had to self refer to the menopause clinic as the Consultant wasn't going to help, and my GP didn't have a clue about HRT - the lady GP I saw said she wasn't 'clued up' on starting doses in someone 'in my position. To say it's been a hellish year is an understatement!
MaryG, I think you're right about the dose you suggested every 12 hours. This is going to be my next step once ive had a few days to 'wash out' and calm myself a bit. I got the feeling that I was getting a big surge from doing 2 pumps at night, and then it was running out. The feeling was like being on a rollercoaster! I agree with you and Hurdity that 1 is very probably not enough to protect my bones etc.
I must admit, both Hubby and I are getting a bit emotional about all this now. He is seriously wanting to kick someone's backside, I can tell you! He's been brilliant the last year, but I know it's been tough on him too. He worries when he is at work if I am doing ok, and I've really been trying my hardest to cope and he says that he knows I have. He also says that he feels I have been made so anxious about going on HRT, that this might be a factor in how I'm feeling right now and I think he's right. When the 'expert' keeps telling you no, you wonder if you're going against them and it's a bad idea. I've been under this Consultant for 10 years, seeing him approximately every 6 months as I had a complex Gynae history due to previous surgeries, multiple complex cysts, extensive adhesions etc. I thought he 'had my back', but it doesn't feel that way now I must admit!
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Of course I don't know the full story but it sounds to me as though you have been let down quite badly :(
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That does sound awful. I had to leave my gynecologist group in the midst of all my issues, and I was hesitant because they knew my history, had already done some testing, and I didn't want to backtrack and have to go through the same tests all over again. And I had really likw my doctors there, but they weren't addressing my problems. I dealt with "This is what women have to go through. It's normal" for two years before I desperation and frustration drove me to my gp. Thank heavens I did. I can't imagine where I would be now if I had stuck with the gyne group. Maybe you should consider changing providers? I know that is scary when you are in the middle of an issue, but if they aren't helping, maybe another provider with a fresh perspective could help.
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Tempest, that all sounds pretty dreadful. You have been very badly treated by people who do not know what they are talking about and have very outdated methods. To tell someone of your age who has had their ovaries removed that they do not need HRT is a complete nonsense.
Why don't you email Dr. Currie and get her opinion?
I'm not surprised that you and your husband are finding this very difficult to cope with and on the back of losing your father too. You really must get some help from a sympathetic doctor who is up to date with the current thinking on HRT and please don't leave it too long. If all else fails, why not book a proper appointment with Professor Studd, I know he will disagree with your consultant. Perhaps you will hear from him next week via email?
In the meantime, I would try to do the split gel dose of 1 pump every 12 hours. I have to do this to keep my levels up but other women find that if they use too much gel in one go, it leaves them feeling wired and restless and they find it difficult to get to sleep.
Sorry you have been put through this hell.
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If a Consultant doesn't believe in the after care why is he/she in the job :bang: :bang: :bang: and why are the GPs local to that Consultant referring patients ………… :cuss:
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Thank you all so very much for your kind words. It really does mean a lot. :)
Just a wee update of what has been happening today. Well, for sure I know 1 pump isn't enough as I said today with sweats again and the brain fog and joint pain has returned. At least now I know for sure!
Also, today I attended the appointment my GP referred me for at the CMHT for assessment for CBT. This was before I started HRT, and before I self referred to the menopause clinic. The CPN I saw was very helpful and listened to my 'story'. After which she snapped her notebook shut and said 'you are a very well balanced lady who has been through a lot and needed help which you hadn't received with your hormonal needs. I really don't think you need to be here, but perhaps counselling might help after all you've been through'.
Hoorah! Affirmation at last that I'm not actually losing my mind. I'd had my doubts this last year, I can tell you! She has given me details of a private counselling service which isn't 'time limited' as it is in the NHS, and which charges a very reasonable fee. 'When you're ready', is what she said. I am pleased with this outcome!
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EEEMMM …….. you have been listened to, however, you should not have to pay for counselling services. There is a wait and your GP should have an idea as to how long that list is likely to be for someone recommending that you should pay for initial services :-\. I have no problems with paying for treatments but if she had a client unable to pay?
I would tend to go for the NHS version first and if necessary, pay for any extra if I felt it was helping, although it is nice to build up a working relationship too with a regular counsellor ……..
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Tis true, CLKD but I have to say that our local mental health services leave a LOT to be desired, so I'd actually prefer to pay a wee bit. By a 'wee bit', it's only a £5 nominal fee so I don't mind at all. And there is virtually no waiting list. I know for a fact in our area that there is an average 18 month wait for talking therapies. It's gone out of 'fashion' because it's too expensive for the NHS to provide when peddling anti depressants and mood stabilisers is so much cheaper. Sickening, but true I'm afraid! :'(
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Better than no treatment at all though :-\. When I had private treatment in the 1990s it was £75.00 per hour.
When I went into the NHS and required therapy it was an 18 months waiting list followed by a letter asking whether I still required it - well yes, as it happens >:(
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Hello again! Just wanted to pop in and say that I have now changed over to 1 pump am and pm. I don't want to say anything about how it's going just yet in case I jinx anything!
Off to GP tomorrow armed with the Hubby, to insist I get my hormone levels tested. I'll let you know how I get on. As you may know, sometimes you have a fight on your hands with GP's to get these tests, even if there is obviously a real need. Wish me luck!
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Good luck! X
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Good luck and keep us posted!
Milamam
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Hey Tempest - let us know how you got on!
Hurdity x
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Hi Tempest
Very best of luck.
One of your posts mentions the feeling of the gel running....I also get that feeling too. Along with the surges you mention - it's very good to know we're not alone.
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Hi everyone! Well, today has been hellish. I have switched for 2 days of 1 pump am and pm and my mood is so low, brain fog very bad, and joint pains are worse. I went to IKEA with Hubby before GP appointment and I actually thought I was just going to crumple in a heap in the store a couple of times! Also, the faffing with the gel is getting me down a bit. I'm figuring I might just as well go back to 2 pumps at night as it's much less hassle as I'm actually feeling worse! I'm not changing another thing until I see my Consultant who did the surgery in 4 weeks and the Consultant at the menopause clinic in another couple of months.😢
The appointment with the GP went ok though. He didn't have anything to offer as far as advice as he said he wants to leave it to 'the hormone experts', but has agreed to test all my levels so I am booked in next Thursday for fasting tests, as he said the Testosterone needs to be done as a fasting. This is something at least!😊
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Tempest I am sorry about all you are going through & I do hope that you get sorted, but I do find the title of your discussion rather blasphemous, sorry to have to say so, but its not easy on the eye at all....just saying.... :(
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I see nothing blasphemous about calling out to Jesus during all this.
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It did not come across that way Lizab but if so, I hope it helps.... :) not looking to argue just the way I read the title must be meno blues....
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I can edit it if it helps? Show me the way, and it will be done. The last thing I want to do is offend anyone.😊
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I know what you mean, Cassie. I was just trying to put a positive spin on it :)
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Blasphemy is the act of insulting or showing contempt or lack of reverence for (a) God(s), to religious or holy persons or sacred things, or toward something considered sacred or inviolable.
If someone can show me an insult or contempt here then please point it out. Answers on the back of a postcard as they used to say.
I see nothing other than another at the end of their tether and calling out for help.
If others want to put a spin on other ladies comments that are going through a difficult time then I suggest you discuss your issues on a religious site.
We are here for the menopause not the religion.
Thanks.
:-*
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I say God, Jesus and Christ all the time - I will probably burn in the fires of hell, but at least it will put me out of my misery..
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The original title was obviously written without intention to offend - but now members know that referring to God or Jesus in this way is upsetting to others, I wonder why people feel the need to continue discussing it. As Peegeetip says, this forum is not about religion - so why not just avoid writing something that you know is distressing to someone of another faith?
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It sure does Hasty that goes both ways, sadly she has left and she gave her reasons, I wish her well.
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Hi Tempest,
I'm in a very similar situation to you. I had a surgical menopause when I was 46 and did very well on oestrogen implants for 5 years then they were discontinued.
My gynaecologist then put me on 4 pumps of Estrogel and I suffered anxiety through the roof. I mean this was on a scale that I have never imagined. It wasn't only anxiety it was hypermania too. A terrifying experience.
I knew immediately that it was the Estrogel causing it so stopped it. After a few days the symptoms disappeared thank god.
When I saw my NHS endo who looks after my thyroid, he agreed that it was the Estrogel and said that starting me on 4 pumps was irresponsible. All HRT/ ERT should be started low and then go slow as you raise.
He then put me on 25mcg patches of EVOREL which I have subsequently raised to 50mcgs but this was done with an 8week interval. It would appear that I need to raise again but he won't do this for another 4 weeks. Even though I'm suffering I totally admire his responsible attitude. As for my gynaecologist.....I won't be visiting him again! Ever!!
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Joesmum it sounds like you have an endo like mine looking after you. they are worth their weight in gold.