Palpitations and feeling hot ....

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Please could someone confirm this is the peri menopause? I'm 48, always suffered with my periods - either heavy or not there! - have recently had a pituitary brain tumour removed and had to come off the mini pill. 7 days ago, I was allowed to go back on the pill (after hospital had performed various hormone tests) and now the past 2 nights I'm waking up every 30 minutes or so with heart palpitations and feeling hot - not actually sweating. Legs extremely weak and I just don't feel right. Anyone relate to this or should I be worried I have a heart problem? Many thanks xx

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  • Posted

    hello laura, sorry to hear your feeling bad.  I too have a pituitary tumour but as its only 4mm there is no suggestion of removing it, how big was yours and what effects have you been suffering from.  I get the palpitation and feel a little hot but dont sweat and my legs are always feeling weak and shaky. troday i have the shakes all over and feel like an ice block. may i ask what your tumour was related to but i quite understand if you dont want to say.  sending you a comforting hug x
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    • Posted

      Hi my lovely.  Thank you for your reply. I have no problem sharing my long story regarding my tumour.  I will try and condense it as much as possible.  Since my early 20's, I've been suffering from ME/CFS. Over the years, I flew back and forwards to the dr with various symptoms over the years only to be told it was to do with my ME. I've spent many weeks and months completely bed bound, have no energy, body aches and pains constantly, no libido, hair loss, weight increase, excess facial hair, skinny legs, largo torso and face, scant periods and more.    Roll forward to July 2012, I flew to Florida with my family. Upon landing, I had an excruciating headache with pains I've not experienced before.  The next day I realised my left eye sight was very strange - blurred, and like looking through a small tunnel. Various visits to opticians in USA, who scanned eyes and could find nothing wrong. I was safe to fly home, but must seek treatment and further scans once back I. England. Upon returning to England 2 weeks later, I did just that.  My local hospital did the exact same checks on the eyes that I'd had done in America!  I waited for nearly a year with just check ups on the actual eyes until I begged my own gp for a brain MRI scan.  Reluctantly, he agreed and so the tumour was found.  It was labelled a cystic mass 23x15x7 mm!  This tumour was pressing on my optic nerve causing the vision loss.  I was placed under the care of Kings College Hospital in London, and they have been excellent.  On 28th January, after lots of cancelled op dates, I finally had transphenoidal brain surgery.  The neurosurgeon performed op through my nose, into the brain. I'm due my MRI scan next week to see how much tumour is remaining.  Fingers crossed, there's none!  I'm still only 3 months post op and must admit I'm struggling with how my body has reacted to this op.  The pituitary gland is the master organ of your body and controls all your hormones.  Once it's been touched, it's very temperamental and causes lots more rubbish for you to deal with!  So, hormones or lack of racing cos of op, drs took me off mini pill so lack of hormones there, and then the menopause starts!  Triple whammy.  Drs are still performing various tests on me.  It's possible I may have Cushings Disease, or even cyclical Cushings. I'm having to take hydrocortisone at present, as my body isn't producing it's own, but hopefully this will not be a long term problem.  If you want more info, I'm very happy to share but don't want to overwhelm you.  Is your tumour being treated with drugs?  To finalise, I think I've had this tumour for years and that I was misdiagnosed as having ME.  I'm not the expert endocrinologist or neurosurgeon, obviously, but I do know my body better than anyone else and am very sad at the years I have possibly wasted with an illness that could have been dealt with years ago.  I doubt I'll never know the answer to that. Hope this info has helped, anything else I can help with, just let me know. Hugs, Laura xx

      Sent from my iPad

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    • Posted

      hello laura, so sorry its taken me so long to reply back to you after you took the time to share with me all you've been through but i'v got sinusitus and my head, eyes, jaws, teeth and feels like everything else hurts so much so as i'm not too bad at the moment thought it only fare to get back to you.  I feel like crying for you what you've been through. You have had to put up with so much and like you i had to wait to get diagnosed i went to a new lady GP in 2005 and with period problems and she was the only doc who looked right through my medical history and it appears i had a high prolactin before i had my son in 1995 which is why i couldn't get pregnant anyway the hospital should of recalled me after i'd given bith to see what my level was but i was never called hence a tumour developing, which has caused all sorts of other hormonal problems as you will know about. \it is very sad i know how you feel and we do know are bodies better than anyone but why won't the medical people listen to us. thanks so much for sharing with us, its important for us all to know about these things cos there'll be other that can relate to you.  enormous hug and love to you, your so brave. x 
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    • Posted

      Hello again and I'm sorry to hear you've been suffering with sinusitis. Hope you're on the mend!  Haven't we got enough to deal with? lol   Are you on medication for your tumour?  I think with prolactin one there are drugs available to shrink it.  Again, I'm not the expert, but you may want to look into this further. The Pituitary Foundation at pituitary.org.uk have some excellent information if you haven't already looked. I've had quite an ok day for me, am now shuffling up to bed, but have been able to sit in the garden today.  It's also day 5 of me not smoking so I'm pretty pleased with myself.  Any questions I can help with, just let me know.  Hugs and snuggles, Laura xx
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  • Posted

    Hi Laura..

    oh bless you ... your going through it... with peri... normally you have night sweats and wake soaked, legs wet through, hot flushes during day tend to come in a wave and you feel hot from within and out and clammy skin then may feel cold, this may vary abit women to women... palpitations are common in peri, but with me its doesnt last long .. thumping heart for a few seconds or so... hope that helps Jay ... xx 

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    • Posted

      Thanks Jay.  It's the palps that wake me and I'm not yet sweating, I just feel hot and flushed.  If you read my reply above to anxious face, you'll see a little of what I'm dealing with at present.  Hugs xx
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  • Posted

    Hi Laura,  It does sound like peri menopause kicked off by your op and/or the pill.  I think it never hurts though to check with your GP just to make sure your heart is okay.  GP's don't always get things right but if you can point them in the right direction I think they eventually diagnose or refer you to someone who can.  As you have found out!  At least now after misdiagnosing you for so longthey should treat you with some respect and not dismiss your concerns so readily.  I found having a dring of sage tea before bed helps with calming the flushes.  I also drink it during the day.  I just put 5 sage leaves into a mug cover with boiling water and leave it for 5 minutes to infuse.  Not the greatest taste but you can add other things to mask the taste.  I believe you can get sage pills from Health food shops and I am now giving maca powder (also from health food shop) a try which I must admit seems to be calming things a lot.  By the time I added B vits to the equation I am feeling much better.  This site has given me so much information and help.
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  • Posted

    I cannot help wondering why your Dr's would advocate a synthetic pill when you have had a tumour on the pituitary. Such hormones can contribute to growth of a tumour? Prior to having the tumour diagnosed did you take any type of synthetic hormone (the pill) and for how long? 

    I personally would not take any hormone replacement following such a diagnosis. Tumours can grow rapidly when hormone levels are high. I can appreciate you may have symptoms of the change, but many women do have those symptoms and prefer to go without hormone replacement because of the health studies and hazards... fif I'd had a tumour I would be all the more wary. 

    It can take a while for hormones to settle and rebalance. Presuming they didn't damage pituitary when they did the surgery, but as you've mentioned taking cortisol replacement I would also assume that ACTH production has been affected and that is why you're adrenals arn't making cortisol? 

    What doses of steriod are you on if you don't mind me asking because cortisol replacement in itself can suppress estrogen or other hormones and affect periods, depending upon the dose. My son was born with Congenital Adrenal Hyperplasia and has taken steriod replacement for life as his adrenals do not make cortisol or aldosterone. However, you only need "replacement" levels and should be tested to establish a baseline for a replacement dose. Otherwise you could have symptoms of under or over treatment. 

    Very easy to overdose and really your Doctors should be working hard to get your replacment dose for cortisolas near as damn it to the normal amout your adrenals would produce. Otherwise side effects can be cushings yet again, and low sex hormones. 

    It has always made complete sense to me that my child only receive what he needs and this entailed regular blood tests 3 monthly as he grew to ensure his GH hormones were not totally suppressed. As an adult it is easier to get to a good replacement dose, but some Doctors would rather prescribe "fake" hormones it seems than fine tune the steriod dose so that the patient has natural hormone production.

    Possibly after surgery on or around the pituitary ACTH production may have been temporarily affected? Who knows, sometimes the body reacts in mysterious ways in response to surgery... it's a big deal, have they said whether you will need cortisol replacement life long? Do you take aldosterone replacement also? Sorry to ask many questions but I was concerned at the mention of synthetic pill's after tumour removal. 

    By that I mean at any point in your future not just after they clear you from doing several post op tests. Dr's know relatively little about the long term side effects of such drugs enough to be 100% sure they are not doing you harm. Just my two cents. 

     

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  • Posted

    Additionally, how are they treating the cortisol deficiency? Hydrocortisone, prednisone, dexamethasone? All of them should be dosed differently where it comes to cortisol replacement, but some Doctors will prescribe doses and times as they are noted for inflammation and for temporary use in patients. 

    For example someone needing to take prednisone for only two weeks may be prescribed them either in the morning or at night and as they're only taking them for two weeks, the side effects of the dose if taken at night are only temporary. Whereas for someone on replacement cortisol, taking this medication at night for a long time can cause bone density and low hormone issues. So it is better to take them first thing in the morning only. 

    Do some research on the circadian rythms of cortisol production and you will possibly find some articles on how the adrenal glands produce it and when. Look for a graph chart which will show you that normal production of cortisol is highest first thing in the morning, and then it gradually lowers throughout the day until last thing at night where it is virtually not produced during sleeping hours. This is because cortisol is a stress hormone. Normally levels of cortisol should be virtually non existent during sleep because we are the least stressed there (unless we are sick and in that case the levels are of course higher).

    The dose is also very important. For example my son took dexamethasone which is the most potent of steriod medications. It's generally dosed once daily an we dosed first thing in the morning because when you dose any steriod last thing at night it's potency is increased many times more than if taken first thing in the monring. My son usually needs .5mg of dexamethasone as an adult, and the optimal dose is slightly less for just replacement therapy. If he get's more he has cushings symptoms and his moods are affected as well as his testosterone production or any of the hormones produced at night.

    The best way to think about it is that you're body produces sex hormones more at night than during the day... the levels are higher, and that only occurs when the cortisol levels lower when you're body is in a sleepy state. From 3am when the pituitary calls for cortisol to be produced, the adrenals start to ramp up and produce it, and it peaks in production at around 8am when we rise and jump out of bed etc. All the sex hormones and growth hormone then start to lower in response. 

    Cortisol is an antagonist to sex hormone production in a nut shell. Your Doctors will tell you that any hormone replacement treatment is extremely primitive and that they can only get as close to normal production for you. But sometimes Doctors are not the best at doing this and different doctors treat differently. I know this much as my sons Doctors have changed over the years. Some felt he should be run in slight over treatment to be on the safe side to prevent adrenal crisis. Others sought to run in practically in the red zone which caused a lot of other hormone problems (excess testosterone production and GH which can also affect growth deleteriously).

    My thoughts are that if you have had the symptoms of going into early menopause, because of the treatment with cortiso, replacement, this could well be the problem, and not the fact that your own ovaries cannot make estrogen. Or that your ovaries would function correctly if your dose where more finely tuned and you were taking that replacement more in harmony wit the way that cortisol is produced. e.g. high doses first thing in the morning and no later than 5pm in the evening to allow for cortisol levels to lower to the "normal" levels they should be in sleep.

    This is really important because bone repair and bone turnover mostly occur in sleep as does tissue repair etc when cortiso, levels are lower and sex homone levels are higher as well as gh.   

     

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  • Posted

    Sorry I meant to add to that last post that taking a cortisol replacement in high doses when you're body doesn't need that dose (days when you are not stressed) can effectively be like having a stressful day... what I mean to say is your body has no way of regulating an over dose or over treatment, and those levels are unnatural, so can have an impact.

    Just not feel like sex for instance when you are stressed out of you mind and going through extremely stressful periods, because your own adrenals are ramping up big time and producing very high levels of cortisol, the effects of taking too high a dose on your body has the exact same effects. e.g. low sex drive and libido, depression, low bone density, hormone imbalances etc. 

    It is therefore really important that you research this one area aloine and try to establish what "normal" replacement doses are for you as an adult. I know that most adults who have my sons condition seldom need more than he currently takes in dexamethasone and most if they are sensible never take the dose at night as the potency almost triples.

    You will find a lot of work on this topic written by a Dr Scott Rivkees. He treats children with cortisol replacement using only dex as this is better able to emulate normal production at the correct doses and only involves one dose a day first thing in the morning. 

    I am not a Doctor but I have dealt with my sons cortisol repalcement issues for over 23 years now and I just thought to let you know some of the possible pitfalls or problems that could be causing your hormone imbalances so you can work at getting better natural hormone production without synthetic hormones.

    If these issues have already been addressed fine. But do check your doses and get anal about it as it is extremely important to do so for you're overall general health and well being. 

    In other words, 

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