This is georgieb daughter.. please dont worry I am not writing this post because she was successful in what she set out to do last night. She isok. She has been for her appointment today and they again have fobbed her off. She was treated as just another sufferer.. its appappalling that she has built all her hopes on today only to be told that she has to have more blood tests. . As her only daughter it is heart breaking to know that she feels so bad. I only wish I could be there 24/7.. how can a woman who had so much life and all to live for now want to take her life so badly.. I know she is suffering and I wish someone out there would help her.. take notice of her. And make her feel a little normal again.. thank you all for your thoughts and your concern. And my only hope is that through this group she will find strength and hope to carry on... I just want her back and I know deep down thats what she really wants too.. thanks again carley

30 Replies

  • Thank you so much for this message Carley, we really appreciate it.

  • Thank you Carley, it is so encouraging to know that she has you on her side...take care

  • thank you we wish her well , xx

  • Having more blood tests is good I know it does not seem much. I have been down as low as your mum, depression is part of thyroid probs but also other probs that the bloods could be testing for . It's not easy as daily you grieve for who you were it's getting lost in the illness. Is she on antidepressant? I've now found some that takes the edge off but things still get me down. Give her a hug tell her that there a lot of people on here for her, we all walk on a similar path sometimes it's up hill and hard then it can be only a little easy. One day at a time. Hugs to you it's hard on close family.

  • Thank you Carley for letting us know,I'm so glad she has such a supportive daughter,I do so hope she starts to feel better soon and that she gets the support and help she needs and deserves,thinking of all of you xx

  • I was the 1st one on this site to hear her pleas, OMG, I'm so upset for her, you poor girl, having to suffer so much, seeing your mum poorly, I am totally with you, I have been there so many times, I gave very sever Graves Disease, Thyroid Eye Disease, nearly blind, high blood pressure and many many more serious illnesses, I get very little support but as least I am now retired , I worked for 42 years paying my taxes and NI, and receive absolutely appalling treatment I've had to be extremely strong, my friends have rune for cover, my family can't cope with me , my hubby keeps leaving me, then repenting....only to leave again.....I have tried to take my life several times, I have been ill for many many years....... Please be very strong for your poor mum.... Be there for her as much as you can....I know it's do hard but please be there for son love me too bits but lives 60 miles away and is in a very hight powered stressful job and can't come down too see me , he is so upset about my plight that he's having to see a counsellor, he hardly ever rings me cos it's too upsetting for us both....even when I pretend to him all the time that I'm doing fine...... I haven't seen him since Early July.....just after I was forced to have my thyroid gland removed..... And I was extremely poorly, going out of my head, no sleep, in total pain etc etc..... I'm now waiting operation on my bottom, eyes and my gallbladder..... Need I go on.... It's never ending.....death would be sheer bliss..... So be strong for for lovely mum she NEEDS your love, hugs, and cuddles more than anything else....big hugs to you and your mum.....God bless you both,.....I'm praying for you xxxxxx

  • I'm so sorry Nuttytish this all sounds horrendous, my thoughts are with you it really scares me reading these posts and think that could be me one day I hope not but my heart goes out to you. Best wishes xxx

  • Thank you for caring it means so much xxx

  • Hi Nuttyfish,

    You have an horrendous story too and I do hope that through this site you will get support and knowledge to make you well again.

    If you read down the page to Editfrmt's commentbelow I think it will help you.

    Best wishes

  • Thank you for caring it means so much xx

  • thank you for this message, hat off to you for being such a brilliant person xxxx

  • It's so unfair that people are suffering like this,I could cry when I read some of these posts!

  • love , hugs and prayers xxxxxxxxxxxxxx

  • Hi Carley. Thank you so much for updating us about your Mum. I'm glad she is ok.

    You must be having a very difficult time with all this too. Indeed, this illness can have a devastating effect on the whole family.

    It hasn't been that long since your Mum was diagnosed with Graves. I can vouch for the fact that it is truly horrible especially in the early days of treatment.

    I won't go into the fine details of my case other than to say I was so ill with a myriad of painful and distressing symptoms that I just wanted to die. In hindsight I can also say my behaviour at times was bizarre. It is ALL related to the condition.

    It doesn't help that the medical profession is totally ignorant just how dreadful Graves can be and they are dismissive of this and the side effects of the treatment. This is made worse by their ineffectual management of treatment. I'm sad to say her treatment today is the norm.

    One thing stuck in my mind during those dark days - it was another patient in the waiting room. He looked quite well. I noticed him staring at me repeatedly during the long wait. How I hated those appointments. My anger knew no bounds - I had an overwhelming feeling I wanted to kill someone but I was too ill to challenge or argue with any of them when they continuously and dismissively mucked up my treatment.

    This guy started to chat and I wanted to thump him. Then he said I used to be like you. I'm telling you that you will only start to get better when you are able to take control. Trust your own instincts - you are the only one who knows how you are feeling. You must challenge them. It took me several months but as I noticed tiny improvements I was able to take more control and adjust my medication dose to suit ME - not what those idiots said I should take. That was nearly 30 years ago. The recovery was slow but I and my family eventually led a normal happy life.

    Your Mum can recover from Graves. She needs heaps of love, understanding, patience and support until she can be your mum and you can be a family again.

    Wishing you all the best xxx.

  • Amen to that. It's only when you start to take control of your own symptoms and learn to listen to your body that you can relax a tiny bit. It's hard work and no one understands unless they've been through it. Thank goodness for HU.

  • Hi Carley, whatever it takes, get her an appointment with Dr. Peatfield. He has been a voice in the wilderness for many years challenging the ignorant establishment. He will understand her problem and work with her to improve her situation. People's problems are only made worse by a system that labels them, depressed, neurotic, etc and your Mother needs to know that she has someone in her corner. She needs to know that she can get back to the way that she once was. Good luck and best wishes x

  • Thank you everyone for for comments, for me ,GeorgieB and Carley,....I'm very ill today because of an extremely stressful Benefits meeting with ATOS, I end up a complete MESS, my poor Hubby had to help me out of the office....because of my Graves' disease any stress can be fatal for me, my muscles went to Jelly and my head was ringing, I was staggering, with my hubby holding me, and I completely keeled over.......I'm now sat in my comfy cuddle chair with my grapes and a cuppa tea, all alone cos he's gone back to work!!!!! So I'm going to chill all day, even if the house is a tip!!!!! I'm shattered.....and Carly I do hope your lovely mum is OK...Bigs hugs to everyone xxxxx

  • They just don't realise how much undertreatment/undiagnosed affects our whole life, between being too ill to work, stress/strain/worry plus the concern of our family members who also have to carry the burden. I'm glad you have a supportive husband.

  • Just to let you know, all he'll let loose this morning, so I've left him and Bradford, I. Going it alone and I'm in Whitby my fav seaside town tonight, I know it's going to be really hard to go it alone but I need my time and my peace without Mr Negative bringing me down, god bless xxxxx

  • Are you safe? Let me know. Omg please keep safe. What has happened x

  • I'm safe and back with my husband, funnily enough while I was in Whitby I received a text message xsaying my Dr wanted to see me urgently at 9 am Monday morning , so I no choice but to return home, so after long chat with Mr negative we are back on line again, for how long God alone knows!, anyhow trots off to see my Dr and sorted some stuff out there and he's prescribed my next 2 mths meds early, well yipeeee folks, he's allowed me 20mcgs of T3 for the 2 mths and 50 mcgs of my t4 so that means I can self medicate my combo a bit to see which suits me best cos my Endo prescribed only 10mcgs t3 and 50 mcg of t4 and I have lots of spare t4 so BINGO at last I can sort myself out yippeeeeeee oh and by the way the stupid so and so tried to tell me I was depressed cos I was angry about something so I accepted those drugs aswell just to shut the stupid nutter up... Doctors grrrrrrrr

    Anybody out there want some spare Mirtazepine chuckle chuckle xxxx

  • Good evening all, thank you for all your kindness you have shown my daughter and me. Lots of love georgieB xxxxxx

  • Georgie, I've been to hell and back with Graves'. It is such a cruel disease. I was put int a mental hospital because my GP refused to believe me when I said it was my thyroid - most of it had been removed 10 years earlier. He said it could not grow again. He should have read his books - it CAN happen - and did.

    In the end I had the rest removed at age 36 and I have been on Thyroxine ever since. It's not completely ideal, but compared with going out of one's head at regular intervals, it's a doddle.

    I hope you can get sorted out soon, my heart goes out to you. Please do keep talking to us on here, if it can help you. You WILL get better, and you will get your life back then.


    Marie XX

  • Hi Maram, thank u for writing what you wrote. I actually posted in the wrong spot. I was hoping for some advice.. I'm 37 and eRly this year I started suffering nausea, panic attacks ( never even knew what that was) it happened 3 times. I got my thyroid tested and my ft4 was high out of range but dropped within a week . I had a nuclear uptake scan and it indicated Graves. It took 3 endo's to believe me.. The third one said my results are identical to graves but he couldn't work out why my blood was behaving ... In normal range. I have most graves symptoms but not TED and have since our on weight. I cry all the time and feel emotionally disconnected and don't feel my happy lovey dovey self towards my my beautiful family .. I feel emotionally numb and unable to feel love and joy and am really paranoid as to why that I have started to question myself as to why I feel like this as the endo says my levels are normal so it doesn't make sense . I'm so upset as I used to be so vibrant , happy and in love with family and life and now I'm scared of the future as it's tormenting to not only think like but FEEL like this .. Plus the heart palps, weakness , chrst pain etc! Now I'm thinking of anti depressants but was against them . I'm on neomercazole low dose just as a trial to see if I feel better . I had improved slightly but silly me took a high dose iodine supplement and brought all this despair back. I actually have thought of going to a mental health clinic but feel it is not me .

  • The only real answer is to get the thyroid sorted out, no amount of anti-ds or mental health clinics are going to make it go away. I f you have Graves' the options are limited, either thyroid-suppressing medication ir removal of the thyroid by surgery or RAI if the medication does not work. The endo may say the levels are normal, but they may not be normal for you.

    It may be that your thyroid is just wild, that's what kept happening to me when I was a teenager. (Imagine feeling like that on top of the normal teenage angst! When people look back with nostalgia to their teens - I say NO thanks! Never again!)

    It seemed that no matter what they did, it would just do its own thing, and hence the first operation at age 18. It really helped for quite a time.

    In those days (Early 60s) there was no block and replace, that might be a possibility for you, suppress completely the thyroid function and replace with Levothyroxine. It could be easier to get you stable. Has that been suggested at all?

    XX Marie

  • Thank you for replying. Basically they are saying because my bloods are normal then they can't help me unless it goes out of whack. My gut feeling and I know this sounds silly I feel like my thyroid is going up and down but in normal range so they can never catch it .. This has never been my personality so I know it's not me... I'm so sorry you feel the way u did in your teens I can only imagine. I think I'll get another opinion and see what they may think. I know my scan showed " diffusely increased trapping typical of Graves Disease"' thank you this sight . I've read a lot of the posts and didn't realize how many of us suffer and want to be well. I just want to Be Me again for my family and work but family ...more than anything and I pray I get better soon as I would love to have another child one day ...

  • Sorry I meant to say thank u and God bless u Miriam for helping xxx

  • Not feeling too good today. You are all right doctors don't know what to do with any of us. Google graves it makes it out to be a walk in the park. Even my fingers hurt just writing this. Dreadful when your body and soul wants out.Think I will go to bed aint even got the energy to get out of this life. Lol. God blessyou all. talk tomorrow xx

  • Oh , GeorgieB, I was the very first one to hear your plea, God Bless you, I stay up nearly all night waiting for you to come back to us, I'm so pleased you are back with us, I've been in that horrible place many many times, and these lovely people here are so precious to me, please keep on posting , we are hear to help and listen to you , great big hugs xxxxxx

  • Georgie, I've just read your daughter's post then followed it. - I remember shortly after I was first diagnosed my fingers were agony. My nails had broken off right down to. The quicks and I could hardly touch things, they were SO painful. I treated my nails with OPI Nail Envy for sensitive nails and almond or any kind of 'light' oil I had around then when my levo kicked into the correct level for me they got better. It is hard to describe how painful they were at the time though - I mean who would ever expect their fingers to hurt when it is your thyroid that was the problem.

    Hope you are feeling much better now,

    Liz x

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