Never imagined I would feel like this at my son's wedding :(

Please feel free to ignore me but I'm struggling to look forward to my sons wedding this Saturday because I feel so ill. I can't really talk to anyone else about it as I would seem to be selfishly pouring water on everyone else's picnic. Just seen my GP my Thyroid Peroxidase Antibodys are still off the measureable scale. She increased my Levo. My thyroid is swollen and tender, my upper back and whole rib cage is painful ( can't sleep with it) it also hurts when i breath in. I'm so tired I could lay on a pavement and go to sleep. Have just had a posterior vitreous detachment in one eye so my vision is blurred and i keep falling over. i also have pain in my hands and feet. I know I'm just feeling sorry for myself but it is not how I imagined I would be at my only sons wedding. I have put on so much weight the outfit I bought in jan won't zip up. I went into one shop today and bought the first dress that fit me. So tired. I guess a lot of you here have had all this and more. I have had many years of fibromyalgia so I am used to pain and fatigue, this on top, is positively life sapping.

31 Replies

  • Hi Marie - so sorry to hear how awful you are feeling. I'm glad to hear though that your GP has increased your thyroxine - sounds like you need the increase, but it would be very helpful if you could please post your latest thyroid function test results and ranges? We will be able to offer better advice then.

    I haven't heard of a vitreous detachment - that sounds very nasty - do you know what the cause was?

    Hugs ((())) xxxx

  • Hi Clarebear. I have posterior vitreous detachment in both eyes. It is when the jelly in the eye is breaking up and pulls away from the retina. It can actuall pull the retina off and then you are in trouble.This could cause blindness. The symptoms of PVD are huge dark floaters and like lightening flashes at night. Not very nice! It's bad enough being hypo without all that.

  • hi bcdgn,

    when you say lightening flashes at night is this when you are trying to fall asleep? Ive had this on and off for 12 years now along with basically a permanent headache/ migraine. Been taking amytriptyline for sometime and that helps alot. Ive always told the doc/ specialists about the flashes and i think they have put it down to the headaches (they are pretty permanent). But now reading this im worried. what do i do to double check this isnt happening to me? I go to the optician every two years and when the headaches started all those years ago it actually started with my vision/eyes and i was checked by an optometrist (?) an eye specialist in hospital anyway, but think id better check again. any advice? xx

  • (((((((((((((((((((((((Marie)))))))))))))))))))))))) I'm sure we all know how you feel. I was so ill for the last 3 months of last year that I struggled to get enough strength to get out of bed and feed myself. It's so horrible when you want to be well for an event and you find yourself feeling so ill you can barely face it, isn't it? .

    Try and be kind to yourself. You've got a dress that fits, even if it isn't the one you wanted. There will be loads of photos for you to look at after the event, even if you can only take part in some of it. Do what you can and don't beat yourself up for what you can't do. I'm sure your son and daughter-in-law will have a great day and you mustn't worry too much if you have to miss bits.

  • Hi Marie

    I know exactly how you feel! I and hubby had a holiday booked to USA/Canada a three week trip. When I thought about it I panicked, knew I would never be able to go, because I felt so negative about my life and everything, feeling unwell and depressed,the clothes buying, packing, getting through the flight and all that flying involves before you even get on the thing! I kept telling my hubby, "we must cancel, there is no way I can cope with this holiday" "I feel soo ill and tired, anxious", I was so worried I would not cope. But....... I have just returned, I had a fabulous time, met lots of nice people, some, a lot worse off than me, and most of all I feel so much more positive about thyroid problems, we could have terminal cancer (God forbid). Life is just once, this is not rehearsal, ok we do not always feel A1, but then does anyone? Sometimes worrying about not coping with a situation is much worse than doing it! Enjoy your wedding, it's a once in a lifetime situation, go please, you will enjoy yourself. And once you realise you should not let thyroid problems ruin your life, you will do a lot more thingsxxx

  • Hello Marie,

    So sorry to hear how ill you are feeling. Life is so damn unfair at times, and this illness monopolizes everything. Firstly, can I ask how long you have been taking thyroxine and what your dose has been increased to? Also, whether you have ever tried stopping it for a few days?

    The reason I ask is because I have learned a valuable trick in trying to beat this b*****d.

    Whenever I have a special occasion coming up and am feeling truly hellish I come OFF my thyroid medication for a couple of days beforehand, and the improvements are remarkable. Now I have no idea what the mechanism is behind this phenomenon, but it works for me. The inflammation subsides along with the aches and pains. And even the debilitating exhaustion eases up. It is a temporary measure of course because as the days go by you know you have to get back on the hormones. Obviously everybody's physiology is different and it it may not be a valid option for some. I've read few anecdotal accounts from folks (not doing well on T4) who had immediate relief on cessation.

    I am not advocating you do this Marie, but I just wondered whether it was worth a shot? You deserve to enjoy your Son's big day instead of just going through the motions. It really does sound to me that levothyroxine is not 'doing it for you' though. Have you tried T3?

    {Hugs} Joan

  • a tube of Voltaren Gel and use it on all your painful Fibromyalgia bits. Be generous with it. There was a time when I used it as a body lotion - !! Well almost. It does help the pain and will enable you to enjoy yourself even more. it doesn't pass through your liver so you can still enjoy the champagne - better than painkillers.

    Have a lovely day .....

  • I do so know how you feel, Maria. It was much the same for me for my daughter's 40th birthday celebrations. She made a big thing of it and everyone looked so nice in their summer dresses. I was hunched in a corner, alone, in my usual black top and trousers because there's no way I can go shopping for a dress. I can't wear other colours, I feel exposed and vulnerable. And I'd been too ill to go to the hairdresser's so my hair was just scrapped back in an elastic band.

    But I'm sure you'll look much nicer than that! You have a dress for a start. Just take it easy, don't go leading the conga round the block! lol You don't have to talk to people, just smile and listen. I'm sure you can do that. Hopefully, there'll be a glass of champers to help you along. It does wonders for me!

    I'm so sorry you're feeling so ill for this wonderful event. It's such a shame, my heart goes out to you. I know how disappointed you must be. I hope you manage to enjoy it just a little bit.

    Much much hugs, Grey x

  • Poor Marie, it is so horrible, can just imagine how dreadful you feel. The dress must just about have finished you off, bad enough clothes shopping when you don't feel at your best without it being last minute and being in a 'state' too.

    I've had vitreous detachments, it is very annoying I could see the 'glittering' area where it detached for ages, eventually I realised I wasn't noticing it any more, have you seen someone and had it diagnosed as that? If it suddenly gets much worse then you need to do something about it fairly quickly - opththalmologist or hospital even but if it is definitely just a vitreous detachment the stuff that you are seeing will eventually go. I'm 64 and mine was last year - it's an age thing. Yet another age thing!

    Just get as much rest as you can before - and on - the big day then slap on a smile as best you can for the photos everyone will be busy looking at the happy couple. After that just go and sit somewhere people can come to you - although if you feel like I did I couldn't be bothered talking to anyone - I could feel alone in a room full of people.

    Good luck and big hugs


  • You are all so kind. I've had a good cry and I'm pulling myself together. ( sorry cant reply to you all individually) I was particularly interested in the short break from Levo Joan. I had already decided not to take the increased dose until Sunday as I have felt so ill since starting it 6 weeks ago. I will consider this. I'm also going to plaster on the Voltarol gel Marz, and some champagne! My PVD has been properly diagnosed Liz, but its apparently a large one with some bleeding into the eye. at the moment, i can see very little, but ive been told it will clear. interestingly, my optician says that he thinks there is a link with this to hashi's. I'm so glad this site exists, nobody else really understands, seems I'm not the only one who is dreading what should be a happy event. Oh well , a bit of boots number 7 and a good dose of brave face! I will post my full results after the weekend. Blass you all. Marie

  • My heart really goes out to you too. I think that's one of the big problems with this disease, it totally changes your life in so many ways, I found that I tended not to organise anything with anyone "just in case" I was having a really bad day. This in turn added to my anxiety and worry.

    Take as many meds as you can, painkillers etc to get through the day. All the distractions may help you and you may forget for even a little while how it feels to live like we do. Even if you get through the ceremony, that will be a great achievement.

    Repeat to yourself everyday "I am going to my son's wedding and I will have a good time and celebrate with the family on a positive and happy occasion". Even if you don't believe it will work, repeat it 10 times every morning and 10 times every night. It may just help :)

  • Thank you I will try that mantra!

  • I can empathise with this. My daughter got married last September. I worked and worked to lose some weight - spent nine months trying and after a supreme effort only gained 4lbs! I kept saying to the endos that I wanted the weight off and my hair back, but it didn't happen and no-one will ever see the photos of me.

    Having said that, I did enjoy the day, despite the panic attack in the church and I wouldn't have missed it for the world.

    You'll be fine on the day - honestly. I hope you enjoy it, I really do.


  • Glad you managed. I have tried to lose weight since October and gained just under a stone, despite virtually no appetite, it is terrible having no control over your body. I know I will enjoy the day when I get there, I just kept getting rising panic that I won't cope. It's not really so much about how I look ( I'm not that shallow) more about having the energy to get through a long day. Your reply is so much appreciated

  • Been out and just come back to this discussion. Must say I had a good laugh at Marz and her Voltarol body lotion - maybe we ought to write to them and suggest a new line.

    Glad your PVD is sorted too.

    That's the right attitude, a good cry now, then a bit of number 7 and a good dose of brave face and you'll sail through the day. Just remember we'll all be thinking of you.

    Liz x

  • Made me laugh too Liz, at one point I'm sure I was laughing and crying at the same time.

    I will go to bed now and mull over all this advice. X

  • Vitreuos detachment is probably unrelated, just coincidence. I had one - scary at the time.

    Apparently it really is an age thing, and short sighted people likely to get it earlier.

  • Hi Marie re the leaving off levo I did that on Dr Peatfield advice but he also gotme to take slow release Vit C at 2000 - Even if you dont go for stopping the levo may be a bit risky so close to the event adding in Vit C might help - it can give an upset tum if you take too much so maybe try on 1000. Might help those painkillers to work ?

    I have just managed my father's 80th birthday and gave a speech - scary ! as others say painkillers pacing and lots of sitting when you can, even a time out gap in a car.

    We parked our camper in the car park for my nieces wedding - bliss to lie flat for 10 minutes now and again - then I found a male cousin doing the same in another vehicle due to his very crazy diabetes. We were also pasta buddies - we both had some stashed as neither could wait until "The Meal".

    Let folks know you're not well then they can look after you a bit too.

    ( My mum was a Voltarol Queen swapped to it from Chanel number 5 in her 30's)

    Have super day X

  • Yes, I'm trying Vit c and the time out in the car might be useful. Never thought about food but I do go very dizzy if my blood sugar drops so I might stash that in the car too! Thanks for advice. X

  • Will do, wish I had a camper van! X

  • It is so dismaying to read of the treatment patients receive in the UK. You have every right to expose it and I am glad you are. There are so many ways to treat this disease, not one soul should be in the position you are in right now. If anything, no one has complained ENOUGH and quietly dispair and courageously try to carry on in spite of the neglect they suffer.

    In the future, perhaps you can find better treatment privately or better medication privately.

  • Hello Marie - Would a massage or facial at home help you to relax for your son's wedding day? Or perhaps ask a family member to give you a pampering session. Every bit helps. And remember we are boss, not our thyroids, so there! At the moment you are suffering a lot but it will not keep you from going to the ball! You will be there and that is what matters. Best of luck and enjoyment.

  • You are very kind. I am going to try and look after myself a bit, you're right. I think often the despair comes from feeling powerless. You hit the nail on the head there. Feeling a bit more positive today, though still in considerable pain despite the 'body lotion' suggested above. I'm hoping I will manage ok, unfortunately we have several hours drive tomorrow to get there before the wedding on sat. Thanks for replying.

  • This is an excerpt about antibodies I thought you might also look into.

    AVOIDING NDT BECAUSE YOU HAVE HASHIMOTO’S Sadly, some doctors will state that those with Hashimoto’s should avoid NDT because it can increase the attack. That has not been true for a large body of Hashi’s patients who report doing quite well with NDT. The key is raising faster than others to counter the initial increase in antibodies, being on selenium (200-400 mcg) which is known to lower antibodies, treating low iron or low cortisol, and in some cases, using Low Dose Naltrexone, which has helped those with more severe levels of antibodies.

    But forget all about this for the weekend and concentrate on joy and family.

  • most parents feel nervous about their childs wedding even those in good health can find it a scary and daunting day. your boy gets to marry the girl he loves let his happiness get you through when its all over you will be so pleased you went and you will have some great memories to keep you going

  • I'm thinking the wedding is today, so just wanted you to know I'm thinking of you and hoping you manage to get through the day.

  • the excitement of the event will take over and the adrenaline might just get you through for few hours.

    make like the queen keep waving and smiling and have a fab day.

    i've hit a low at the minute three months into a new job i was really enjoying so i sympathise

    Hugs xxxx

  • Well folks, I made it! It was a lovely day and, although I'm beyond exhausted since we got back, I did really enjoy it. I did use Voltarol gel like body lotion! And I also left off the Levo for two days, and I did feel better for it. I think the warm sunshine helped too. Thank you all for your advice, and just for being there. Marie x

  • Marie I've been following your comments. So glad you enjoyed the day it is so very special, and so are you Mum of the groom. If not for you he wouldn't be there to get married so give yourself a pat on the back for rearing a nice young man who fell in love. Now just look forward to the grandchildren that might arrive. You have the lovely photo's to look forward to as well and relive the day all over again. I do that when I'm having a low day with my Hashi's

    My Son was married last year at age 46. I thought he was never going to find the right girl. But she's great. I was so shattered I had the same stress about a dress but in the end I thought well it's what's on the inside that's important. So I slapped on the lippy and the perfume and a big smile and like you had a wonderful day.

    God Bless you

  • You are so right! I feel a bit pathetic really, I guess I just felt so ill I had a bit of a meltdown! What you guys on here gave me was a chance to keep all this Hashi mess away from the wedding. I managed to look serene and dignified! Bless you all

  • I am 4yrs post stroke really seriously ill youngest son getting married tomorrow haven't been able to get my hairdo or clothes have spacticity n severe stiffness I am really bad and I could not go to the wedding in this state pain is to much I feel devastated

    It's a register office later on a church blessing if I could get well enough for that would be something

    I know how my Son will feel and so will I,I wouldn't want to be crying in pain and spoil his wedding.

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