Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: Tempest on November 07, 2016, 12:14:27 AM
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Hi Ladies,
I've not been around lately as to say that my Specialist's decision to put me on a 0.25 Estradot patch after using 3 pumps of Estrogel was a COMPLETE disaster is an understatement! I can't think what on earth her rationale was to switch over onto such a small dose of the patch. >:(
I managed 2 weeks, and then.......hormone crash. It's been a nightmare! Hubby rushed me to GP, who tried to contact my Specialist as an emergency and GP hasn't had a reply. So we have gone up to the 0.375 patch on GP's advice. I still feel awful, and the patch runs out completely half way through day 2.
To top it all, my Psychiatrist now wants me to start Mirtazipine as he thinks I have severe anxiety and major depression. I'm supposed to start it Monday night. I know in my heart the cause of this is all hormonal, but if I do indeed now have separate anxiety and depression, I'm convinced it's been brought on by the complete nightmare of the fiasco I've been through trying to get my HRT sorted over the last few months.
So - I'm trying to figure out a sensible dose of the patch, as I really can't go on like this. I was best on 2 and a dab of Estrogel (I'll settle for 2 for argument's sake) so is this nearer a 0.50 patch? If so, I'm going to try 2 of the 0.25's I have left. I'm stabbing in the dark here, as I am not entirely sure I'm going to do well on the patches as I seem to be sucking them dry very early, but I'm guessing if the dose is sufficient this shouldn't happen?
I'm pretty sure I'm now getting tarred with the 'nutter' label by my GP now that the Psychiatrist has diagnosed the major depression and anxiety and that my bargaining days to get effective HRT are coming to a close, especially as we can't get any input from my Specialist and I'm not seeing her until January. I was hoping to be half way stable by then and to ask for the Testosterone that I believe I desperately need, but that doesn't look like it will happen if I'm still stuck on an inadequate dose of estrogen.
I really thought I was going to get somewhere this time. It seems not. :'(
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I feel so sad for you reading this Tempest and really sorry you've had yet another horrid time
I have no experience of the equivalent of gel/patch but I'd guess you'd need at least a 50mcg and possibly higher when/if Testosterone is introduced
Again I have no experience with the patch's dose running out, it's fairly common that I forget on change day and go it the next day and can't say I've ever noticed a change in anything symptom-wise but I think it's obvious that your body is really needing the consistency of oestrogen and like you say uses it very quickly
The sooner your best dose gets sorted the better so that you can move forward and have a regime in action
I also, like you think it's obvious hormones are responsible for every single emotional and physical symptom you have, I'd say if there's any separate issue going on it'd be as a repercussion of the trauma you've been enduring which once again had hormones not played a part, you'd be as you were pre meno
Our knowledgeable ladies I know will be right here for you tomorrow to help and advise with your question but I couldn't just read and not pop in to let you know I'm thinking of you
Xxx
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Hi Tempest, Im so sorry to hear this, I have been wondering how you are getting on. After my 'crash' I started on a 50ug patch and finally settled on 75ug. On the 50, I was feeling very faint and was very weak. I stuck with 75, as still felt bad, but after a couple of weeks then started to have some normality back. We are no longer producing any of our own oestrogen, so may need that bit more then someone who still has ovaries. My specialist said that the 'norm' for ladies without ovaries is from 50 to 125ug!! In your case, 25 does seem very very low.
Hope this helps a little, all the best.
Rx
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Hi Tempest - fellow new patch starter, I wondered where yiubhad got to? I did suspect it might be a low patch issue that kept you away. How awful hon. Listen, I've got ovaries although no longer working and I'm on 85 patch. I know exactly what you mean with it running out, I get that too and was told to keep old and new patch on for 24 hours on changeover day. I'm so sorry you're bad hon, your bad, not mad! Up your dose and wait for specialist to get back to you. Although I too wonder what she was thinking with that dose!
Good luck hon.
Keep posting
Dxx
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Dear Tempest
I really feel for you and am sorry that you are no further forward.
I don't want you to think that I'm peddling drugs here, but why not take the Anti depressants? You've been through an awful ordeal and it will take a while to get the HRT doseage right and you'll need time for it to settle too.
As I see it, you're in a position and it doesn't matter what caused it, but you are left with the fall out; anxiety and depression.
I think Mirtazapine are good for sleep and anxiety, so you could give them a go and they may allow you some breathing space over the next few months.
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Sorry Tempest, I just want to qualify my last message! It does matter to us what caused the anxiety and depression, but in terms of the recovery, the AD's could help.
I think we are both in the same boat, i.e. Looking for stability and balance, but there are no prizes for getting there AD free.
Can I just when you mention a hormone crash, what do you mean? I feel like someone else! I live in a blur of total anxiety and deep depression, and can't get out of my head. A bomb could go off next to me, and I'd still be in my trance!
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Hi Tempest - I'd imagine you're completely fed up with people telling you what to do so I'm not going to do that. I just wanted to add that I've been through hormonal depression twice, after giving birth. The first time I took the anti d's, the second time, three years later post delivery, I was waiting for it to happen, and it did, but there was no bloody way I was taking those things again. I was HORMONE depressed and although it was tough, I waited it out and when the hormones levelled out, so did I.
Think carefully before succumbing to the anti d's hon, they're a devil to come off. If you can, try and talk to meno specialist before you make a decision on them.
Good luck.
Dxx
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Hey, try not to feel discouraged. It really sounds like you are still having very strong fluctuations/falls or are more sensitive to them, as in your autonomic nervous system is registering them as dangerous when they aren't. This will create extreme anxiety to alert you to the perceived threat.
I'm sure that in time your brain/CNS will become desensitised to the lower levels of hormones and will stop throwing you into this extreme anxiety. You're probably in the eye of the storm right now and every time you try to breakthrough to the other side you're met with a torrent of anxiety.
In the meantime the HRT may make the road smoother but you probably need to give it time to start to buffer the strong fluctuations you are having. I suspect the specialist didn't want to go too high with the oestrogen due to the higher falls it will bring but the low level is probably triggering a strong fall to start with.
If your instinct is that you need more then try that but see it all as an experiment which is only needed temporarily as things will eventually settle down, even with very minimal hormone levels. Go with the equivalent of when you felt the best and start from there.
I think most women with strong fluctuations causing anxiety are deemed as anxious at best and referred to mental health at worst. Be firm and tell them you know it's hormonal as the fluctuations in HRT, for example, trigger the anxiety. Yours is just a tricky case and they want to ensure you are supported, with ADs if necessary, whist you go through this volatile phase. It's completely your choice if you wish to take them though and I'm sure no one is giving up on you or discounting the hormonal cause.
Try to see every day as an opportunity to assess how you are doing and chart your results. If they are really bad then this will be a clue to what you need and easier to assess when patterns start to emerge - especially if your anxiety is higher at certain days in the cycle because, yes, you may still have a clear cycle going on in the background as you still have your pituitary gland remember! You can then show this to your specialist to help with next moves.
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Hi Tempest
Sorry to hear about your ongoing problems finding the right dose of oestrogen. From what I recall though - you yourself were concerned about high oestrogen, and I think also maybe you had a reaction to the sudden high of the estrogel which is why I imagine your specialist has started you on a low dose patch?
Patches do not run out of oestrogen as such (at least from what I've read) because they contain far more on them than can be released through the skin in the time they are on there. However if you find they are not eliminating symptoms then that means the dose is not high enough - but I can still see it's a good idea to continue with these and increase slowly.
There was a thread a couple of days ago about just this question in the other section here:
http://www.menopausematters.co.uk/forum/index.php/topic,33673.0.html
...and this is what I posted:
"I don't think it is possible to give an equivalence like that - all the serum estradiol levels are averages from a populations of women being studied and actual readings are hugely variable. With gel particularly I think there is a huge variation between different women in levels and I read in a paper about pharmacokinetics of HRT (roughly - what happens to the hormones from the external source, how much of it gets into your body and is transported/metabolised, as time progresses) that one of methods - can't remember if patch or gel - had a ten-fold difference between the highest level ( of serum estradiol) and the lowest in the women studied. Also some women absorb the oestrogen better via one mode of delivery than another as we have seen on here. The best way is just to look at the approximate strength of the dose ie low medium or high. The standard starting dose for patches and gel or at least for post-menopausal women - ie a medium dose, is two pumps of gel and 50 mcg patch.
From reports on here some women achieve far higher levels of oestrogen on 1 pump of oestrogel than a 50 mcg patch but others barely absorb it at all. It's probably partly to do with application method ( for gel) as this can make a huge difference in how much is absorbed, or skin type or what you put on the skin. Body weight will have a bearing as well - all other things being equal, small thin women will achieve a higher concentration of estradiol from a given dose than tall fat women!
You oestrogen level should not fluctuate with a patch - as long as it stays on of course - and even if it comes completely unstuck levels only decline over 24 hours so you do have a bit of leeway.
According to the Australian Menopause Society in fact 50 mcg patch or 1 mg gel is medium dose (1 sachet of Sandrena) which is between 1 pump estrogel (0.75 mg) and the standard dose of 2 pumps (1.5 mg), so it sounds from this as though 1 pump is more like 37.5 mcg "
You can get an idea of what dose is low medium or high for UK products from this website - although it does not state the relative strengths of estrogel doses.
http://www.menopausematters.co.uk/treatafter.php
Yes I would increase to 50 mcg (after having a week or two on 37.5 mcg - because didn't you react badly to sudden increases?) - and let your doc/specialist know.
I would resist the ADs if you can, as you yourself believe you still need to find the right hormonal treatment which you haven't yet managed to do since your op. I'm with Dawncam on this one. If you dull your senses ( and dampen your flushes) with ADs then how on earth will you be able to truly find the right hormone dose? However I am not you, so if in your heart of hearts you are no longer able to cope at all while experimenting with oestrogen dose still, then perhaps you should try the ADs - but from what I've read on here they can have side effects and can take a while to work too.
Take care and hope you manage to sort this out soon :)
Hurdity x
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Oh my goodness - thank you, thank you for all of your very kind and considerate replies! I'm sorry I'm only now just checking in to read them all, but it's been a very tough time just of late.
I have decided not to take the AD's - at least not Mirtazipine as it has a very well documented side effect of causing considerable weight gain and also leaving users pretty much zombified - I don't need that! I have persevered with the 37.5 patch and for the last 2 days things has looked up a wee bit - I even managed to go to an art gallery with Hubby yesterday which was lovely but I think I may have overdone it a bit and it was extremely cold here (we had snow)! I could feel as if I was still 'in there' if you know what I mean (I'm relating totally to what you are saying about your experiences, Dawncam)! This evening I'm feeling not so good, but tomorrow is patch change day and at the moment I'm definitely feeling it. :-\
Hurdity, your reply is invaluable! Thank you! The 37.5 feels like 1 pump roughly. I have some of the 25 patches left so my plan is to use two of these in a week or so to try increasing. If successful, I'll then return to my GP and ask for my prescription to be changed. You are right about sudden increases in my case! It's actually been something of a stramash with dose increases over the preceding month with my Specialist wanting me to titrate quite quickly at first (I think she thought I wouldn't have problems), so you are correct I think in that she is now taking a more conservative approach. I think I'll be ok going up by this relatively small increment. The trouble really started for me (aside from the rash I developed) after her asking me to increase to 3 pumps of the gel quite quickly from 2.
Dangermouse, your reply is very helpful. Thank you!! I never even considered the role of the pituitary gland before. You've given me a lot to think about there, especially with the reaction of my CNS to fluctuations (I'm guessing this is the key to what happens during the rollercoaster of peri for so many ladies here too)!
Once again, thank you all so much for taking the time to reply so kindly to me with your advice and well wishes. I hope one day soon I may be able to write a happy post to tell you that things are moving forward in a positive way. Both Hubby and I are so grateful to you all (he says thank you as it helps him to understand too from your replies, and he thinks you're all just wonderful, strong ladies)!
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Woohoo - you're back!
I'm so glad you're resisting the ad's for now Tempest. I really think you'll 'get there' when you're hrt dose is stable. I think, for the moment, you must put trust in your practitioner. Possibly helpful to have some point of contact with her (personal email?) for dire situations?
Good luck hon.
Dx
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Glad you've popped in Tempest
You're doing remarkable and it's really you that is strong.
Xx
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Good for you Tempest, glad you managed to resist the AD's. I wish I had your strength.
As others have said, they do have side effects.
Glad you've seen a glimmer of hope over the past couple of days.
All the best xx
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Hi tempest I must have missed this the other day, I cannot give any advice about doses. I am however on anti depressants and have been for years for generalised anxiety disorder. To be honest when peri hit me my doctor thought my ads had stopped working my anxiety was so out of control, so I don't know if they would actually help you. Hormones are so powerful when out of whack I think they override everything. I am glad your feeling a wee bit better today and hope you really get something that really works for you soon...your right about it being cold here but I'm actually enjoying it makes me believe my regime is working cause last year I never felt cold at all with my blasted hormones, I love the cold lol xx
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I too am really pleased that you have not taken the ADs. It looks as if things are slowly moving forward. Just to note, I had good and bad days while things were settling. The change for me from oral to oestrodot was like starting from scratch, the anxiety, very low mood was bad initially. Try to keep doing stuff like visiting art galleries etc to try to take your mind off, this is the way I approached it, felt dreadful some days but pushed on. Looks like you are doing the right thing by escalating dose very gradually.
Good luck!
Rx
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Hi Tempest - good to hear from you :). Glad things are looking up - even if just a little. Bit by bit things will improve. I hope you begin to feel even better once you are on 50mcg. I don't think you do have a cycle as such any more though do you as your ovaries have been removed, and therefore the main feedback loop is no longer there ie "the ovarian hypothalamic pituitary axis" - which leads to ovulation and menstruation?
Yes great idea to keep on doing positive things to make you feel good - and if you can get out in the fresh air and countryside (despite the cold) that will help enormously too. Do keep in touch when you can :)
Hurdity x
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Thank you so much, Hurdity!
I saw my GP yesterday who has now changed my Estradot to 50 - at the end of day 2 of the 37.5 I was getting a huge dip so we hope this will help.
Also, I'm seeing my psychiatrist tomorrow and my GP recommended that if he does suggest an AD that I ask for Venlafaxine.
Curiously, my GP also mentioned that Professor Lumsden has asked for permission to view my psychiatry notes and did I mind if she had access to these? I agreed but I'm a bit uneasy about this as not sure where this is going....... :-\ I'm trying to think positively that maybe it's to see if there is a pattern to my mental symptoms since my oopherectomy.
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I haven't been on for a while so only just saw this and just wanted to add my voice to those saying how strong you are and that you are doing amazingly.. I haven't got any helpful advice as am floundering in similar hormonal *****.... wondering if I will ever be normal again!
Take care xxx
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Hi Tempest
I'm like you, I overthink everything and the outcome is never good. Try and keep positive as you've done brilliantly so far.
By the way, if you need any advice on the venlafaxine let me know, i've taken it before and it was a damn sight better than the one I'm on now!
Good luck.
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Thank you so much, Abby! Your appointment with Dr. P is soon isn't it? I hope he has some answers for you and can work with you to help you feel much better. Hugs!!!! :)
Hi, Mis71Mum! Thank you so much for your kind words. :) Yes, any input on actual experiences of taking AD's would be greatly appreciated please in case it's needed! Did you have any particular problems getting off Venlafaxine? I know it's an SNRI, and we know from past experience that I absolutely cannot do SSRI's as my anxiety goes through the roof on them. It wasn't always thus, as I had Fluoxetine after I had my son for a while (there is definitely a pattern of us PND ladies getting worse mood problems in menopause, I feel)! Honestly, who would be female?!? :o
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Hi Tempest
I was on 37.5 mg twice a day of venlafaxine but then moved to the 75 mg extended release if I remember correctly. When I was ready to come off the medication, I moved back to the 37.5 mg twice a day and started to chip of bits of the tablet. I know for a fact that there's a well researched reduction plan on line too. I'm sure when I came to the last stages, I took fluoxetine for 5 days as a bridge and then I was off no problem. More importantly, I had no withdrawal effects after either. You do have to be careful of venlafaxine because of its short half life.
Just out of interest, did fluxoetine work for you? If so, would you not be as well to start on something that you have tried before? I'm annoyed that when visiting my GP, they have prescribed me Sertraline, Citalopram, Mirtazipine and Duloxetine....but never the one I had excellent results with years ago.
Good luck.
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You tapered sensibly, Mis71Mum! :)
I've read that fluoxetine is often used as a bridge for this drug, and I've also read a lot about what happens if you take a dose late or miss a dose too! It may be worth considering though in my case - I'm thinking the depression I have now is an extra 'add on' as well as hormonal now. :-\
I did try Fluoxetine again during the time when my GP was trying to fob me off with AD's instead of HRT after my surgery. That time around, it was a nightmare! Huge anxiety!! My psychiatrist says it's not unusual to not be able to tolerate SSRI's during or after menopause - he's seen it before in quite a few ladies. This is when he usually then goes for SNRI's or the older Tricyclics. I'll chat to him more about this tomorrow.
What have you found the best so far for you, Mis71Mum? I can't believe the rotters won't let you revisit a drug you know you do well on. If you don't mind my asking, what are you trying at the moment? As if the hormone juggling wasn't enough in itself, eh? Sheesh!!! :-\
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Hi Tempest
I take duloxetine at 40mg, its a SNRI. To be honest, I don't think it is a common one.
I couldn't take Sertraline as it made my BP go to 166/126! I'd go back to Venlafaxine if I was given the chance.
I'm not really sure how much of a difference it's made when I'm positive it all has a hormonal cause in the first place.
But I have slept a lot better since being on an AD.
Hope today goes well for you.