Menopause Matters Forum
General Discussion => New Members => Topic started by: Annie0710 on July 03, 2016, 12:36:50 PM
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Hi, I haven't been on for quite a while
I'm still suffering, due to my hysterectomy 17 years ago I've always been on oestrogen hrt but since peri hit me 4/5 years ago the oestrogen therapy hasn't been enough, I sailed through those 13 years on it
Last year after joining here I was intently reading Hurdity's positive reactions to Estradot so have been on that since, I love it for the practical reasons but still feel poorly
I've always had this nagging feeling that there's more I can be given, that my hormones are out of whack, thinking logically (but perhaps I'm completely wrong) those years post hyster although my oestrogen level was very very low and then replacing it got me back on track I was still producing progesterone and testosterone
At the start of peri I went downhill, never having flushes or night sweats but pretty much everything else
Most troublesome are Recurrent herniated discs , my back is painful daily now, painful hip, terrible arrythmia, anxiety, continued hair loss, increased random allergies, loss of libido, crashing fatigue, bouts of nausea to name a few
My absence from the forum was more due to 2 factors, dr's repeatedly told me they can't do anymore for me hrt wise and also I developed double vision and identical symptoms to nocturnal ophthalmos which led me to research other conditions, although I attend regular hospital eye appts, they still haven't come up with a reason
I also tried utrogestan 100mg as the gynae I saw said he was happy for me to try progesterone cream which I felt OK on, so bought my own utrogestan to trial, again I tolerated it well and felt a little better, the sleepiness at night was lovely
Mid June I asked for estradot in 100mg instead of 75mg, and surgery said they'd agree only if I had a consult with nurse, so I met her. She's new, she's moved from the hospital gynae dept and we sat chatting, I explained some of the symptoms I have and she was amazed I've never had my testosterone levels checked, I explained I've asked numerous times but was refused. She's booked me in for the blood test mid July and asked that I stop utrogestan (which I've deteriorated since stopping it, more anxious and moody)
She said even if I'm borderline low on T she would fight my corner for a therapeutic trial
I'm so sorry this is so longwinded
Would members who have had/are on testosterone therapy give me feedback on how they felt/feel?
I'm so worried about trying it if it is offered making my hair loss worse but I've read a few reports that it can increase scalp hair growth
Annie xx
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Lovely to hear from you! All experiences shared may help others.
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Nice to 'see' you too CLKD!
Annie x
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The Change can throw all kinds of un-expected horrors can't it >:(.
Was it the GP/s that kept telling you that they can't do any more?
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GPs and a gynae they referred me too, he just said I'm going through 2nd menopause (1st was 6 months after my hysterectomy at 32) and 2nd menos hit harder and given the fact I've been on oestrogen since 32 there's nothing more that can be done
It was only this chance meeting with this new gynae nurse they've employed at the surgery that the offer of a testosterone test, and possible therapy has been mentioned
If it doesn't work out I'll get my pennies together and look into contacting prof studd
Do you know how much he charges for telephone consultations ? I've looked on his website and couldn't see
Annie x
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The advice you have been given has been rubbish :sigh:. Medical expertise moves on so fast that there is usually another route to take ! It might not be this year but next????
I am sure that someone will be along who has had consults etc. with Prof Studd.
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CLKD, you are right, Professor Studd would have a field day with this. Annie0710, am I correct in thinking you have had a hysterectomy but have kept your ovaries? If so, I can't think why you are taking Utrogestan, you don't need progesterone and all it will do is make the oestrogen less effective.
From what you have said, it sounds as though you have the same problem I had and that is you are not absorbing the oestrogen from the patches. Everything you have said suggests you are not getting anywhere near enough oestrogen. Therefore, the best next option for you would be to try Oestrogel which is, in my opinion and having used both patches and Oestrogel, a better and more flexible product. It is certainly more easily absorbed and the beauty is that you can adjust the dose either up or down - flexibility is key to all successful HRT regimes.
I think you could benefit from testosterone and I am very surprised that you have never been tested for your testosterone levels.
I recommend you have a look at Professor Studd's website, he has a section on HRT and hysterectomy. I'm afraid none of the treatment you have so far had makes any sense to me and if this level of treatment continues, I suggest you seek advice elsewhere with an expert like Professor Studd.
I hope that helps.
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Thankyou so much Mary !
Re: progesterone, it wasn't prescribed, gynae said I could use the cream, I think he said it to shut me up as I repeatedly asked "how do you know for sure this isn't a hormone imbalance I'm suffering from?" I got desperate with the symptoms and was trialling progesterone (stress relief, sleep aide etc)
This new nurse said the same, she's surprised I've never had a testosterone level checked as my ovaries went into shock at a young age after the hysterectomy, that is why she's ordered it and will fight my corner for treatment if it's still in range but low
I've had a look at Prof Studds website and if this test doesn't help I will contact him
Do you know what he charges for telephone consultations ?
Thank you again
Annie x
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Yes, Professor Studd does do telephone consultations and an MM member recently had a successful one with him but I don't know how much it costs. It might be worth ringing his office and speaking to one of his secretaries.
The gynaecologist should have realised why you were having problems, not just tried to get you to shut up, I despair.
Good luck and please let us know how you get on.
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Yes, Professor Studd does do telephone consultations and an MM member recently had a successful one with him but I don't know how much it costs. It might be worth ringing his office and speaking to one of his secretaries.
The gynaecologist should have realised why you were having problems, not just tried to get you to shut up, I despair.
Good luck and please let us know how you get on.
Thank you Mary
I'm getting quietly optimistic now, I have every symptom of low testosterone !
I just worry about it increasing my hair loss, but, it could actually be the cause of it, now that would be the icing on the cake if test gel cured that
Annie x
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Hi Annie0710
I started on Studd's regime three months ago (due to go back for the check up with him next week) and like MaryG am on Oestrogel (3 pumps daily), a very tiny bit of Testim (Testosterone gel) and Utrogestan (100 mg for seven days a month, which I use vaginally).
I was on Femoston 1/10 and experiencing all the classic signs of low oestrogen (thinning head hair, aches in my body, a lovely and luxuriant moustache, really brittle nails, eyes that looked like 2 dead oysters, etc.,) plus anxiety, low mood, feeling "unreal" and so on.
MY GP is a patronising 12 year old who suggested I "be weaned off HRT" and take liquid anti-depressants when I asked for higher levels of oestrogen. Personally I am no advocate of AD's although I recognise many women find them helpful
Had my blood tests done on the NHS and my oestrogen level was only 72, despite being on the crap Femoston! Less than most men's, so no wonder I felt so horrible for the past 3 years
Since being on Studd's regime, I can honestly say I feel better now than I have for years. Head hair is not thinning as much after three months, aches gone, skin and nails much better, and more importantly, my anxiety and low mood have significantly reduced to the extent I feel "normal" now with more energy and motivation.
It was £300 to see Studd in person but I don't know what he charges for a telephone consultation.
It was worth very penny in my opinion- otherwise I'd have spent the last third of my life being nearly bald, bearded, no fingernails to speak of, crap skin, aches and pains and feeling like the living dead.
Do get your hormone blood tests done on the NHS before you have your consultation. Saves a lot of money as compared to Studd's clinic doing it.
Good luck! x
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Hi Annie0710
I started on Studd's regime three months ago (due to go back for the check up with him next week) and like MaryG am on Oestrogel (3 pumps daily), a very tiny bit of Testim (Testosterone gel) and Utrogestan (100 mg for seven days a month, which I use vaginally).
I was on Femoston 1/10 and experiencing all the classic signs of low oestrogen (thinning head hair, aches in my body, a lovely and luxuriant moustache, really brittle nails, eyes that looked like 2 dead oysters, etc.,) plus anxiety, low mood, feeling "unreal" and so on.
MY GP is a patronising 12 year old who suggested I "be weaned off HRT" and take liquid anti-depressants when I asked for higher levels of oestrogen. Personally I am no advocate of AD's although I recognise many women find them helpful
Had my blood tests done on the NHS and my oestrogen level was only 72, despite being on the crap Femoston! Less than most men's, so no wonder I felt so horrible for the past 3 years
Since being on Studd's regime, I can honestly say I feel better now than I have for years. Head hair is not thinning as much after three months, aches gone, skin and nails much better, and more importantly, my anxiety and low mood have significantly reduced to the extent I feel "normal" now with more energy and motivation.
It was £300 to see Studd in person but I don't know what he charges for a telephone consultation.
It was worth very penny in my opinion- otherwise I'd have spent the last third of my life being nearly bald, bearded, no fingernails to speak of, crap skin, aches and pains and feeling like the living dead.
Do get your hormone blood tests done on the NHS before you have your consultation. Saves a lot of money as compared to Studd's clinic doing it.
Good luck! x
thank you Freckles, it's so nice hearing success stories
I've not been honest to the doctors about anxiety and feeling low as I know they'll try and palm me off with ADs, as much as I believe they have their place with emotional disorders I know what I'm feeling is as s result of something, and would rather treat the problem to alleviate the symptom of that makes sense
So re hair loss/thinning, are you saying it has reduced since your new regime ? Mine is more noticeable on top , scalp is showing probably because hair is thinner there but it's a diffuse loss, now I'm noticing it at temples, pony tail is ridiculously thin now, and I lose lots of strands drying my hair
My oestrogen levels are always good, having been on hrt for so long , prog near 0
I was thinking that too, get my results mid July from doc and if they don't help pay prof studd to help me
I really appreciate you ladies for sharing your experiences
Annie x
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Get your results and see Prof Studd ……… why wait. If it seems expensive to you, then maybe family have a whip-round: pre-C.mas gift ;-)
Once you get your regime sorted, maybe book yourself into a hairdresser for a re-shape?
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Annie0710, do you know what your oestrogen levels are? The reason I ask is because what is considered to be a good level for some women is no good for others and I need very high blood levels of oestrogen to feel good - the so-called normal blood range of oestrogen was completely useless for me. I don't think low levels of progesterone are a problem but it could be that you personally need to have high levels of oestrogen to combat your symptoms.
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Annie0710, do you know what your oestrogen levels are? The reason I ask is because what is considered to be a good level for some women is no good for others and I need very high blood levels of oestrogen to feel good - the so-called normal blood range of oestrogen was completely useless for me. I don't think low levels of progesterone are a problem but it could be that you personally need to have high levels of oestrogen to combat your symptoms.
Oestrogen was 774 April 2015 when last tested
2012 (onset of problems) was 400s
Then 1x600s and 2x 700s
I'm not sure what I'm better at Mary, whenever I seem to increase my dosage I don't feel well, have taken it off today for a few days to see how I feel
What I can't get my head around is for all those years I was great on 2mg elleste solo (Max dose)
Apart from progesterone the only other thing it can be is testosterone
CLKD, no hair dresser for me, my hair is awful and can only cope with being put up gently with those grippy clip things, it looks awful
Saw derm, she said a mixture of Seborrheic dermititis and female pattern hair loss just by looking at it, another specialist who wanted me in and out in no time, no follow up appt either
It's not the money that's stopping me contacting prof Studd, I've got a breakthrough in 2 weeks of the NHS testing my testosterone, so that day I'll ask for Oestrogel to try plus see what she says re testosterone, if it's a no, then I'll call prof studd and get it that way
I can't thank you all enough, I'm sick of feeling so lightheaded and disorientated amongst all the others
The eyes can wait, at least I can still see even it if it 2 of everything
Annie x
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Annie0710, that is a good level of oestrogen and you are obviously absorbing it well so that can't be your problem so it's good to have eliminated that.
Perhaps you felt good on the Ellesse because you still had some of your own oestrogen?
I imagine you have been checked for other problems so I think you have pretty much narrowed it down to the testosterone. As you say, it is best to wait for the outcome of the testosterone result and go on from there.
Good luck and please let us know how you get on.
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Thanks Mary
Yes I think after the ovaries not working properly and then going on elleste I did still ovulate every few months, as I'd get sore boobs every so often, I think that stopped coming up 2 years ago and bloods show levels consistent with post menopause
The only other thing could be thyroid, as the symptoms so resemble menopause and given that I developed this double vision dec2014, developed this nocturnal eye drying 5 months after then within weeks developed hair loss they all could be thyroid but I'll have to pay private for those tests as my last thyroid was 2.2 and in range, I got chatting to a lady who had Graves who's tsh was similar to mine but she tested positive on antibodies so has treatment, Nhs won't test for antibodies with that tsh level, as my optician says, 'something' has caused it and the docs/specialists need to find out what but they're confident it's not life threatening so aren't interested
Onwards and upwards
Annie x
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Annie, do you mean having T3, T4 open thyroid etc. checked? I always have the full set of thyroid tests as well TSH as of course. Perhaps you could push for it?
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Annie, do you mean having T3, T4 open thyroid etc. checked? I always have the full set of thyroid tests as well TSH as of course. Perhaps you could push for it?
Yes Mary plus antibodies, they only do tsh and ft4, but a lady I was talking to said hers were fine but tested positive on antibodies
I don't know much at all about thyroid panel but I've heard a lot that t4 converts to t3 so that at least should be included, I'll ask again
Annie x
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Sorry, me again
I've just been reading up on Estrogel and a common side effect is hair loss 😮
I don't know what to do now 😢
Annie x
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Annie0710
I can understand your anxieties but the possible side effects of Oestrogel, including possible hair loss at just that- general possible side effects and it depends on your other hormones results and how they interact. It doesn't mean those side effects will happen to you
It's about getting the right HRT for you, at the right dosage and the right method of application.
Guess you you have a couple of choicesSorry, me again
I've just been reading up on Estrogel and a common side effect is hair loss 😮
I don't know what to do now 😢
Annie x
I'd suggest you can do nothing and continue to suffer with the on going anxiety and the hair loss, and 'one size fits all' attitude of the NHS
Or see Studd and at least try his regime for 3 months. You have nothing to lose apart from the consultation fee. At least you'd be clearer where the hormone imbalance lies?
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That's see Professor Studd then :-\ :-X
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Annie0710
I can understand your anxieties but the possible side effects of Oestrogel, including possible hair loss at just that- general possible side effects and it depends on your other hormones results and how they interact. It doesn't mean those side effects will happen to you
It's about getting the right HRT for you, at the right dosage and the right method of application.
Guess you you have a couple of choicesSorry, me again
I've just been reading up on Estrogel and a common side effect is hair loss 😮
I don't know what to do now 😢
Annie x
I'd suggest you can do nothing and continue to suffer with the on going anxiety and the hair loss, and 'one size fits all' attitude of the NHS
Or see Studd and at least try his regime for 3 months. You have nothing to lose apart from the consultation fee. At least you'd be clearer where the hormone imbalance lies?
Freckles, I panicked when it listed hair loss as a 'common side effect' on Oestrogel , I was about to buy some online from a consultation I had a uk website until I can get these results in 2 weeks to give to prof studd, I can't contact him at the moment with no up to date results and no T results at all
I've been thinking about nothing else at work today, I'll definitely be contacting him the minute I get my hands on these results, I feel wretched, just how I felt 4 years ago when peri hit me, not sure if it's a bug or meno but I can't carry on like this
I've been sleeping well since stopping the utrogestan mid June but I've noticed a steady decline in everything about me since then
Because of how I felt on the 100mg Estradot these past few weeks I took it off yesterday and my goodness I had an awful sleep, probably coincidental but I was hot one minute cold the next, sweating then not
So, my plan of action is get my bloods done 14th July, get results then contact Prof Studd straight away and go from there, just hoping I don't go further downhill
As a side note, I browse another forum for women who have had a hysterectomy then gone into menopause and there's a few who have been prescribed progesterone by gynaecologists, not for any medical reason but because it was worked out that completed their regime in getting them back on an even keel
Annie x
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Well that's a positive plan of action!
It's shame the NHS lets down so many women by giving them either ineffectual HRT or worse, no HRT at all, so that we have to shell out our hard earnt money to get proper help privately.
It shouldn't be like that. It's frustrating when GP's don't listen or give poor treatment.
If you are getting your tests done in 2 weeks maybe ask when you can expect the results back, and in the interim book a consultation with Studd in advance of getting the results back?
Obviously take the printout of test results with you from the GP with you.
At least that way, you know it's organised ahead.
You can get blood tests done at Studd's clinic and the results are very quick, either hormone tests or the "all singing, all dancing" very comprehensive test of hormones, vitamins, cholesterol, thyroid, anything else you can think of, etc, etc, - £250 to £300. But I've had my basic hormones tests done on the NHS as I can't afford the extra cost.
I truly feel better than I have done for years on his regime and my head hair is noticeably better after 3 months, skins and nails so much better but more importantly, my anxiety and low mood have gone and I no longer feel "unreal" or "depersonalised". I feel I have finally got my life back
I fully acknowledge every woman is different and some HRT tablets/preparations work for some and not others. I can only say I felt like total crap for years on Femoston - it didn't work for me and my GP wasn't interested in other HRT options to prescribe, only AD's.
I know I sound evangelical but Studd's regime really has changed my life.
Keep us all updated- you have everything to gain and nothing to lose (except the fee!)
Freckles x
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Thanks Freckles, so much and I mean that :-)
Depersonalised, that's how I feel, I'm existing not living , I've given so much up for feeling so low and no esteem, I lost the energy and confidence to socialise, I gave up my career because my brain went to mush, but many of us here can tell a sorry story so I won't harp on, we're here because we've suffered
Does Prof Studd alter the regime from woman to woman ? Tweak I should say ?
I can't afford the tests from him unfortunately but I can definitely afford his consultation
Annie x
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Hi Annie
I would say from what I've read on MM from other women who have gone to see Studd he does prescribe according to individual needs- it's not 'one size fits all' approach
Obviously women vary a lot in their physical and mental health history, so have different HRT needs. Puddlesmum posted on here recently and after speaking with him, she said he definitely gave an individual prescription for her specific needs.
Plus you have to return to see him after the first assessment for a 3 month check up (with hormone tests) to see if anything needs tweaking or not. I'm off to see him for the 3 month check up this week. Then I think it's yearly, which I can put up with, cost wise.
I say to you - feel the anxiety but do it anyway!
He does know his stuff, was very nice and helpful to me and as I said he has changed my life.
You'll need to fill out a medical questionnaire before the consultation, so whether it's via telephone or in person, if you can scan any previous test results and the current ones and send/give to him that would help.
Good luck and let us all know how it goes! x
I didn't want to spend the last third of my life shuffling around like an escapee from the Eternal Twilight Home for Permanently Troubled and it was clear my GP didn't give a damn.
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I say to you - feel the anxiety but do it anyway!
What do you mean Freckles by 'feel the anxiety'?
I have hormone test results spanning over the last 4 years, plus an extra bonus is I realised my Nhs T test is next Thursday not the Thursday after so I've gained a week 😀
I spoke with my fiancé earlier and he's in agreement with me to get me better
Annie x
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Hi Annie0710
I have come late to this thread but you asked specifically about testosterone.
I did not have mine tested because I went to see Dr Annie Evans and she doesn't see the need for tests - instead going on symptoms. She also said the tests is not very sensitive because it is designed to differentiate between male T levels which are of course much higher. Ours are at the lower end of the scale.
My symptoms were very low libido, excessive tiredness and specifically exhaustion and muscle pains after exercise (I go to exercise classes). My GP was going to refer me for fibromyalgia - because they just don't recognise T deficiency at all. However having visited Dr Evans I started T last May (2015) and my response has improved enormously, but especially the muscle pain exhaustion thing has gone. I am still tired and sleep more deeply than I used to - not sure why this is - but I don't have that fatigue and pain I used to get.
You really do not need to pay to see Prof Studd!
It is amazing that your T levels are being tested and the NICE Guidelines do make provision for women to be prescribe T for low libido. In your case as you've had a hysterectomy you do not need progestogens so it should be fairly straightforward.
Your oestrogen levels are very high so it doesn't sound like you need to change your dose or method of delivery - so if you are happy with the patches then keep on with them. Maybe they are too high? However trying T gel may well be what you need.
re the thyroid - my TSH level was 2.97 and it is interesting that those who are on medication with a thyroid problem are supposed to aim for their TSH level to be much lower than this, yet the threshold for treatment is 4.5 or above! As with all things women will differ at the absolute level at which they feel well or not. Dr Evans suggested she would also try me with a low dose thyroid hormone if the T did not work, but as it has I have not pursued this.
Can you ask to be referred to an endocrinologist? - I know a tiny bit about the T3 T4 thing + antibodies through a friend of mine who had to go privately and ended up taking Armour thyroid in order to feel well, as she didn't convert T4 to T3. It is an under-researched and much neglected area I feel. Countrybumpkin is an expert on this.
Please do stick with what you are doing at the moment because all you will get from Prof Studd is a prescription for estrogel and testosterone - and looks like you may well be OK for this? Also there are other gynaes ( depending on where you live) who can prescribe similarly including NHS menopause clinics - although not all prescribe T.
I can dig out the bit of the NICE Guidelines if you like - where it suggests docs can prescribe it off licence.
Sounds like your practice is quite progressive.
Hope this helps :)
Hurdity x
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Thank you Hurdity for taking the time to reply
This is a new nurse, maybe the surgery realised they were out of their depth with lots of menopausal women? They created her post as Women's Health and she has come from the local Gynae dept at our hospital, she cares, and I think that is what struck me straightaway, no other professional has cared. And she said she'd fight my corner for a trial of T, after the appt I went straight to reception and told them how lovely she is, they said they've been inundated with this response from women
regarding Estradot: I went from 75mg to 100 a few weeks ago, anxiety and light headedness has been awful so I've cut it to approx 75 again, I may try half to see how 50 does for me, but I also have to be mindful of course that this might not be down to oestrogen at all, maybe I felt better on utrogestan because it lowered my oestrogen ? It all is above what I can take in most of the time, but I'm willing to try things
Testosterone: reading up the symptoms, I have the complete list so if Nhs can't help me I will have to look elsewhere, at to know I've tried
Thyroid: yes I hear this all this time from thyroid sufferers, that they feel their best at 1, I looked back on my thyroid results and remember a time I felt better than the rest over the last 4 years and at that time my tsh was 1.something. 2.2 is the latest and highest and I know it's not ridiculously high but like you say, we are all individual and feel better at our own level. I've ordered thyroid panel plus 2x antibodies from BlueHorizon today so at least that's another avenue I can explore/cross off my list depending what the results are
I've just picked my granddaughter from school and park right near but it's like my legs can't carry me, it's worrying, twice since January I've had 2 unexplained falls, no fainting just legs went and fell, only injuries were where I hit the floor, no twisted ankle etc where I could've tripped
I don't have depression but I do have low moments or phases, it's never day in day out continuously but I guess the hair loss doesn't help nor do these symptoms, it's hard to feel cheery and optimistic all the time when you feel so poorly
Annie X
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Hello Annie0710.
I just wanted to chime in and say I completely sympathise with your situation.
I am 59 and haven't had a period for six years. I have spent a lot of that time trying to 'fix' myself because something, somewhere often felt out of whack. There have been times when I have felt 'normal' and it's always been such a relief when it happens, like coming up for air. Unfortunately though the low moods etc return.
Like you I am now considering seeing a Gynae privately so that I can have an in depth discussion with an expert and hopefully move forward.
It's exhausting and worrying to feel so unwell and having to be pro active all the time is very draining.
Interestingly the journalist Mariella Frostrup wrote that one of the things she experienced with her menopause was despondency! We are not alone.
Wishing you well.
K.
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Bless you Kathleen, it's horrible isn't it ? Are you on hrt ? When I had my hyster at 32 I was fine for 6 months, then I started having bad night sweats and creepy crawly skin feelings, vaginal dryness, lots apart from flushes (still haven't had one) I had no idea what was wrong but my lovely doctor where I used to live knew straight away and fid bloods, my oestrogen was very low so she put me on oral hrt, it was heaven almost straight away but 2 weeks later symptoms returned so she put me on max dose, and then for 13 years I felt great and back to normal
Until peri hit me.......
Annie x
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Hello Annie0710.
I was 54 when my periods suddenly stopped in 2010 and I just battled through as best I could but after 3 years I noticed my main symptom of anxiety became much worse and I began experimenting with HRT. As I still have a womb I need both oestrogen and progesterone but I clearly haven't found the magic formula yet. My GPs have been helpful but they are not specialists and of course we only get a 10 minute appointment.
My main symptoms have been psychological and my flushes have been mild, even at night. In the past I have been guilty of lying to doctors and telling them that I do have night sweats and lots of flushes because that seems to be what they are looking for in the menopause and it means we can stick to the subject! I think I'll be completely truthful when I see the Gynae though!
Wishing you well and I hope you get the regime that works for you.
K.
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Thanks Kathleen, you too X
Annie x
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I posted a bit about thyroid function tests on here somewhere by James Le Fanu …….. can't remember where though :-\
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I'm more inclined to think my thyroid will be ok, it's just this double vision is bothering me, and the cause , 5 months after that started the 'through the night' dry eye started along with diffuse hair thinning/loss, all 3 could be linked to various conditions and I'm not getting any help from dr's as to why
The myasthenia diagnosis is still ?is it/isn't it? But neuro discharged me with instructions to book an appt if I deteriorate but I wouldn't class my muscle weakness severe enough
I don't think my eyelids are fully closing while asleep, which isn't a problem IF you don't get dry eye on waking up, but I get the dry gritty discomfort every morning and can't open my eyes without a fair bit of discomfort for about 15 mins
Plus @10llbs has crept on in the last year, and I can't seem to lose it
Annie x
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Could you use the spray-on eye 'drops' ? Or an eye mask?
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I've tried the gel drops eye clinic recommended (I'm a day contact lens wearer) but they didn't do the trick, still woke up with sore eyes but also had greasy eyes all the next day
I bought an eye mask and that didn't keep them moist either
I have dropped off to sheep a few times and woke not long after seeing a slit of light which makes me think the lids either can't stay closed or are turning up /inside out type of thing, I even asked my fiancé to try look while I am sleeping but woke frightened stiff when he was staring in my face so he didn't get chance to see
Annie x
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Do you have ingrowing eye-lashes which might cause irritation? Have a word with a local eye-test person [name gone ::)]
Mine have been itchy and gritty for years, fortunately they aren't too bad in the mornings.
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Annie, one of my very first symptoms of peri were dry eyes . One time they got so bad I couldn't keep them open. I think now this might have happened due to a sudden dip of estrogen which affects the meibonian glands (sp?). The doctors gave me eye drops to apply daily but what worked best are:
- very strict eye lid hygene
- warm pads on eyes evening and morning and as needed. These keep the lipids flow more easily;
- good Omega 3 supplement.
With these measures, my eyes improved within days. It is a very disturbing condition, wish you luck to overcome it!
And - contacts futher worsen this condition, can you stop wearing them for a while to allow your eyes to recover?
Milamam
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Thanks ladies
I don't have any dry eye (watery or dry at all day or during the evening)
However, if in the evenings (later) my eyes will dry if I'm playing on my phone (so my eyes are in down position ) so it seems it's a weakness/swelling (but not a visual swelling to me) if I don't play on my phone I'm fine until I go to sleep. No eyelash problem
I go to orthoptic at hospital every 6-12 weeks to monitor the double vision but to be honest I think they're giving up now with the double vision, they tested the serious things, tumour, diabetes but don't seem interested in looking for other reasons
Oestrogen is fine, 774 was last level
It literally is the period of closing them during sleeping that dries them out, googling the symptoms it's identical to nocturnal ophthalmos which 2 reasons are the most common : laser surgery which I haven't had, and thyroid
Annie x