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  • #16
    I don't actually know if he has a supporting optometrist, I forgot to ask last time. His secretary is brilliant so I will give her a call otherwise I'll get Nurse-zilla calling me back at 5pm saying "do more warm compresses" blah blah blah.

    For the PRP they just said to keep them in the freezer up to 3 months, take 1 bottle out at a time and keep in fridge for up to 7 days. Two of the bottles had come away from the freezer block during transportation so I threw those out to be on the safe side. I've emailed Vissum for advice but no response as yet. They were brilliant when i was there so hopefully they'll come back to me.

    Was on and off the sleep meds until August this year so you may be right. I'm not taking any medication aside from Doxycycline now. My GP noticed my hair loss before I said anything but she just won't treat thyroid when TSH is 5, so I'm seeing the endo again. She said to make sure I eat lots fruit and veg to get right nutrients which i'm doing anyway so I don't think it's a mineral deficiency unless I'm not absorbing things properly. The endo is not particularly great I don't think but I should be able to get the antibodies test through him seeing as I'll be paying! I've been getting pain in both knees and elbows the past few weeks on and off. I'm worried it's Sjogren's but the rheumatologist ruled it out from negative ANA and RF plus low inflammatory indicators so my GP said to wait for a while before she'll refer me to him again. I know joint pain can occur with Hypothyroidism though (my mum had joint pain). I don't have a dry mouth at all. I've also been getting sinus pain mainly when I lay down but occasionally in the daytime, my GP said she's never heard of anything like that at all, I think she thinks I'm going mad, I feel like I am sometimes!

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    • #17
      Yes, we snack on nuts for minerals and dried fruit, plus I use only sea salt (small amount) in cooking. Not sure how that pans out on iodine though. Still like a good oil salad dressing.

      Good to try different things to heal the whole body. On coping, anxiety etc, I like Oliver Burkeman 'The Antidote' and Paul Gilbert 'The Compassionate Mind'. Hopefully people will post up some more recommendations.

      What has really helped on overwhelming anxiety is taking time out for 10 very slow and conscious breaths and concentrating on letting out what could be called 'toxic thinking' (you can develop to pranayama, as seen on YouTube, if you like that). Continue allowing thoughts to bubble up and leave. This can be a massive help to sort your head out if you are a 'high octane' personality and doesn't take long.

      If anxiety in consultations is a problem, you can train yourself to trigger the 'stepping back, relax the shoulders and clear your head' feeling during the breathing, eg I pinch thumb and 3rd finger on left hand together, which works for me for some reason. Some Neuros are actually quite into this, but are not allowed to say so at work, lol.

      I'm more slow-burn so random useful activity is my antidote, but the 10 breaths allows me to accept the magnitude of the problem and think more clearly about solutions. Quite difficult to find peace with all this going on, but if you can, it makes things more manageable.

      Hope your eyes feel better again soon.
      Last edited by littlemermaid; 11-Dec-2013, 07:23.
      Paediatric ocular rosacea ~ primum non nocere

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      • #18
        Originally posted by littlemermaid View Post
        Yes, we snack on nuts for minerals and dried fruit, plus I use only sea salt (small amount) in cooking. Not sure how that pans out on iodine though. Still like a good oil salad dressing.

        How difficult to get your eyes comfortable.

        Good to try different things to heal the whole body. On coping, anxiety etc, I like Oliver Burkeman 'The Antidote' and Paul Gilbert 'The Compassionate Mind'. Hopefully people will post up some more recommendations.

        What has really helped on overwhelming anxiety is taking time out for 10 very slow and conscious breaths and concentrating on letting out what could be called 'toxic thinking' (you can develop to pranayama, as seen on YouTube, if you like that). Continue allowing thoughts to bubble up and leave. This can be a massive help to sort your head out if you are a 'high octane' personality and doesn't take long.

        If anxiety in consultations is a problem, you can train yourself to trigger the 'stepping back and clear your head' feeling during the breathing, eg I pinch thumb and 3rd finger on left hand together, which works for me for some reason. Some Neuros are actually quite into this, but are not allowed to say so at work, lol.

        I'm more slow-burn so random useful activity is my antidote, but the 10 breaths allows me to accept the magnitude of the problem and think more clearly about solutions. Quite difficult to find peace with all this going on, but if you can, it makes things more manageable.

        Hope you feel better again soon.
        I don't really have an issue with anxiety, strange considering the constant pain I guess. I've had problems with sleep for 10 years on and off so that's what I needed meds for this year. Luckily that has got a bit better now. Will never take sleep meds again, definitely not right for me.

        I've always been a laid-back 'deal with anything' kind of person but it's hard to keep pushing to get answers when you are in constant pain and very few people understand the pain. I used to always be on the go but now if I'm not struggling through work I'm at home. I've stopped talking to quite a lot of friends because they don't understand why I'm not suddenly getting better. I just get comments like "i thought you were having treatment for that though" and "you must be used to it by now". I have sent articles on dry eye to a couple of friends so they can understand better but still get the "can't you use Optrex or something" comments.

        I think if I were to have normal eyes and suddenly wake up with this level of pain I would freak out but I'm learning to plod along and try not to talk about it all the time with family, colleagues etc.

        Today feels similar to when I had conjunctivitis once when I was a kid. Very sticky eyes which I never normally have. I want to stop the PRP serum for a bit but was told it takes at least 10-14 days to have any noticeable effect so if i start it again in a few days time i'll be starting from scratch. It feels like it's clogging the MG's up, not sure if that's possible.

        How do you learn to cope with a pain that is different everyday? It seems almost impossible. Sometimes I can go out for an hour or two and I get my hopes up that I'm turning a corner then the next day I wake up feeling with soreness/aching etc, I never know what i'm going to get each day. Everyone is looking forward to the Christmas break but when you don't get a break from pain nothing is that enjoyable.

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        • #19
          Ophthalmologist at my eye clinic called me back. Hadn't heard of PRP serum, knew what autologous serum was. Told me to stop using it if I think it's irritating my eyes, wait a few days and see if they are better. If I think i have an infection to use the chloramphenical I already have and to call again next week if not better. Not great when I have no idea what is going on with my eyes, they are getting 'gunky'. Will just turn up there tomorrow if it's not better. Wish my regular ophth wasn't away

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          • #20
            Liz

            I would consider myself a triumph allbeit very much still a work in progress

            I was in chronic corneal neuralgia pain caused by dryness in my eyes ( schirmer test 0 and 1.5 ) that no matter what form of treatment I took the intense pain would not stop day or night.

            I went over to Alicante in May and saw Doctor Alio at Vissum and have been back 3 times since.

            It took me 4+ months of taking the PRP Autologous Serum for the pain to really ease and for my eyes to start to feel more comfortable. But i have to say that the effect for me has been a dramatic improvement in quality of life. It took quite a bit of time to kick in and even now things have some way to improve as my eyes still feel dry but i need artificial tears a lot less than i used to.

            I agree that the PRP does cause crusting around the eyelids but ive had no eye infection at all even though i have blepharitis and rosacea and used to get infections all the time about a couple of years ago. Ive found using blephaclean wipes for the blephairitis a real big help as opposed to using the old fashioned Johnson baby shampoo treatment and belphaclean does help keep my eyelids clear of debris.

            I use each bottle of PRP for a maximum of a week once i take it out of the freezer and keep it refigerated. I had similar experience to you where i thought i had broken the cold cycle but Dr Alio emailed me back quite quickly to reassure me that as long as the drops had not been frozen then they were fine on the airplane journey back to the UK.

            But with eyes and medicine in general it does seem to be that we are all unique and what works for one of us does not necessarily work for all of us. Because of NHS funding issues i have not been able to try Autologous Serum but i would personally recommend Dr Alio and PRP if like me you have chronic corneal neuralgia and other treatments were not helping.

            Take care
            Steve

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            • #21
              Steveyez - I am hoping to hear back from Dr. Alio soon. I emailed him Tuesday morning.

              My Schirmer's is 0 and 1, my TBUT has been given anywhere from 3 secs to 15 secs in the past few months. I've had to stop using the serum. I'm going to try a new bottle on the weekend.

              I use blephasol to clean my eyelids in the morning and at night.

              I'd hate to think I've wasted time and money on something that should be pretty harmless even if it doesn't help!

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              • #22
                Originally posted by lizlou29 View Post
                I use blephasol to clean my eyelids in the morning and at night.
                Lizlou do you think you may be sensitive to the Blephasol? Have you tried just using plain boiled water to clean your eyes? I find my eyelids get very sore & red if I overdo the cleaning, even just with water, and this adds to the overall level of pain in my eyes. Sometimes when the skin is getting very sore I have a break from cleaning them for a few days - but I find that dandruff-y flakes develop, so I go back to gentle cleaning. For the last month or so I've been using very dilute tea-tree oil shampoo in the mornings (using a cotton bud to get right into the lash roots), and plain boiled water in the evening. My lids aren't quite as red as they have sometimes been (although still suffering with sore, dry eyes.. )

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                • #23
                  Originally posted by littlemermaid View Post
                  On coping, anxiety etc, I like Oliver Burkeman 'The Antidote' and Paul Gilbert 'The Compassionate Mind'. Hopefully people will post up some more recommendations.
                  I also loved 'The Antidote' - subtitled 'Happiness for People who can't stand positive thinking' -that's me! Oliver Burkeman a very sensible & intelligent chap.

                  A book which has been very helpful to me recently is 'The Relaxation and Stress Reduction Workbook' by Martha Davis et al. Lots of useful things here: visualisation, focussing, progressive relaxation, coping skills, mindfulness etc. It's putting it into practice which can be the hard part but it's useful to dip into when things are bad.

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                  • #24
                    Liz, are you trying the ice compresses yet? Is it helping at all? Although personal experiences vary, I will say that when my eyes were inflamed two weeks ago due to the sudden drop in temp and humidity, everything, and I mean everything, stung like gasoline. I had to use the ice before and after application of any drops, including serum, but after a few days I could tell that the inflammation was going down. Then, the serum drops were much more tolerable and I could go back to my regular frequency of dosing. I was also using the moisture chambers, humidifiers, staying away from bad food, and all the other regular things I do.

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                    • #25
                      Yes I am doing cold compresses - not ice cold as i feel they aren't good for my rosacea. My eyes are watering a lot more at the moment, not in a nice way, feels like lots of salty water in my eyes. I'm seeing an Optometrist later at my regular eye clinic for a consultation about sclerals. Luckily my brother is driving me there as eyes too bad to drive comfortably right now. I was going to see if someone cant take my upper punctal plugs out whilst i'm there and if things get worse I could have them put in next week again.

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                      • #26
                        Hi Liz

                        I didn't get on with the blephasol solution but blephaclean wipes seem to irritate me a lot less - you can get blephaclean wipes on an NHS prescription so if you've got a prepaid certificate then the wipes maybe worth a try

                        You mention saline regarding the PRP but I'm pretty sure the advantage of PRP over the NHS blood service autologous serum is that PRP contains no saline solution or anything else apart from your own blood which should mean we don't react adversely to it - the PRP doesn't irritate me at all whereas I feared the saline solution in Autologous Serum might.

                        Stuff like the UK version of Restasis - Optimmune I simply cannot tolerate as it irritates my eyes that much

                        My daily regime is as simple as blephaclean wipes, vismed gel unit dose drops and PRP serum - hope the info helps

                        Really hope you get on fine with the PRP - ive just got back from a night out watching a play at the local theatre - that's something that wasn't possible at the start of the year!

                        Steve

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                        • #27
                          Originally posted by lizlou29 View Post
                          NotADryEye - the endocrinologist I saw a couple of months ago (private not NHS) didn't think I should be on mefication as a fluctuation of TSH between 4.5 and 7 was 'normal'. I've had a letter from his secretary saying I should go for a follow up but I don't see what he'll do, apart from make money from me. He said my eye dryness would only be caused by hyperthyroidism not hypothyroidism and he'd only order a antibodies test if my TSH level kept increasing. Not sure whether to push my GP to do more tests as she wouldn't refer me to NHS endocrinologist unless my TSH was much higher or lower. I know there is something wrong as eyes worsening, hair falling out. I feel tired all the time, not physically but as if I haven't slept properly even when I have. My GP said she is running out of ideas and she is starting to go down the 'it's just stress' route. Yes I'm stressed because I don't know what is going on with my body.
                          lizlou29, I just received my latest thyroid panel results. TSH 7, in the US, is out side the normal limit. The normal range is 0.45-4.5. Something to think about if you are spiking to a 7. Happily mine is down to 0.88. Lower is better.

                          Also, I found this list of doctors who treat thyroid disease in the UK that you might be interested in. It was put together by a patient advocate in the US. You might find someone who is more open to investigating your condition. See link below. Best of luck.

                          http://www.thyroid-info.com/topdrs/unitedkingdom.htm

                          And how is your Vitamin D level? Has that ever been tested? You may have already told us, but I just don't recall. I ask because low Vit D can also cause hair loss.

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                          • #28
                            Steveyez, I will try and get some Blephaclean wipes. I tried a new bottle of the serum again yesterday and it just feels awful, as if I've got tiny pieces of glass scratching my eyes. I know this isn't most people's experience with it. I haven't heard back from Dr. Alio. I have emailed the general enquiries email address as well now. So frustrated that I can't use it.

                            NotADryEye. I would love to find a doctor to treat on symptoms not just numbers as I know some do. I got a hold of my old blood test results from the Health Centre I used to go to as I have had thyroid blood test a few times since I was 18 and was struggling to stay awake throughout the day. My GP always said it was borderline and I never asked for the TSH number. Turns out it was always between 5 and 10 and GP's here don't tend to treat a TSH between 5 and 10 so I will go armed to with these results when I see the endocrinologist on Tuesday. Don't think he's the best but I will definitely get another endo's opinion if he tells me everything is normal as he did before. He said only hyper can cause thyroid problems, my ophth disagrees but I get the impression he wouldn't want to hear that. My Vit D was 15 nmol/L (<50 nmol/L is a deficiency) a few months ago. I've been taking 5000iu Vit D per since then so this should be OK by now but my GP is rubbish with ordering follow up tests, she thinks if i'm taking supplements it should be fine. My skin has gone very dry as well, I am worried it is Sjogren's but I'm going to have to push for further testing as the rheumatologist said not Sjogren's from my blood test results but I'm learning that most people have more tests than I did. So tiring try to find answers especially with so many doctors unsympathetic to dry eye problems.

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                            • #29
                              lizlou29, between 5 and 10 is very high for TSH. If you have access to your earlier tests bring those to your next endo apt. Show them all. The endo is absolutely wrong that only hyper can cause eye problems. Simply wrong. That mistake alone would send me to another endo, along with being dismissive of TSH between 5 and 10, even 4.5 is the absolute high end here. Even my ex-GP who did not diagnose my thyroid disease would have taken notice of TSH 10.

                              Good that you're taking Vit D. Where it is not sunny deficiencies can be even more prevalent.

                              I wouldn't worry so much about Sjogren's just yet. Wait until you get the thyroid diagnosis.

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                              • #30
                                Finally had some correspondence with the Vissum Institute regarding the PRP serum. Not sure if they misunderstood but I said the serum was causing more (intense) irritation. They said judging by the colour it is still ok to use i.e it didn't get too warm and to only use it 3 times a day. I said I couldn't use it at all and they just said stop the Celluvisc at night and use only the serum. Well if I wake in the night or when I wake in the morning I can't open my eyes without the Celluvisc so I have to use it. Then I just got an email saying best of luck and report back in 2 weeks. Well I can't use it!

                                Had an appointment with an endocrinologist. Good luck I've developed a thick skin and don't look to most doctors for any sympathy! Had a thyroid antibodies blood test and he's started me on Levothyroxine again, just 25mcg so that's the plus side. We looked at my TSH results over a year and they've crept up. He talked over me all the time, hadn't heard of PRP serum (fair enough), told me not to waste my time of unfounded treatments "like the magical serum and naturopaths". He said that if my eyes were that dry I would have got autologous serum on the NHS. Said what 30 year old doesn't get tired easily. Almost certain that thyroid isn't causing eye problems and that it must be Sjogren's but to leave it a year or so until having another ANA blood test as result can change, until then i'd be wasting mine and the rheumatologist's time. He believed my joints aching is because I've read about Sjogren's and Hypothyroidism symptoms and sometimes the mind then plays tricks (it's real, i'm not crazy). Said my hair falling out and dry skin is likely due to stress at work or relationship, I said neither are causing stress, only eye problem is. He said I'm being treated for the eye problem so not to let myself worry about it, just focus on the good things and get on with life. I agree the thinning hair could be due to stress but I know why I'm stressed.

                                Apparently I ''appeared anxious'' when talking about my eye condition and to think how anxious a blind person would feel and it puts my condition into perspective. I don't know how many times someone has said "at least you have your sight" etc. Of course I'm grateful for that but why the need to compare one condition with another. It makes no sense.

                                He said that if my TSH is suppressed to between a TSH of 1 and 2 in 6 weeks time I can stop the Levothyroxine. I said if it helps shouldn't I carry on and he said only people with actual Hypothyroidism rather than subclinical should stay on it and why would I want to stay on medication when I feel better. I know this isn't right but could see where pushing the point would get me.

                                Just picked up VitA POS ointment to use at night. My ophth said I need Vit A for dry spots on the cornea but I thought Vit A deficiency was extremely rare in the UK, normally found in developing countries where rice is the staple diet as it doesn't contain carotene. Oh well will give it a go.

                                Eyes have been so bad this week had to keep leaving work early. Ideally I would have had a few days off but can't afford to and work is manic at the moment.

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