Does everyone else feel like this?

I have to let out a long sigh before starting to write this because I don't know where to begin. I just need to know, are these symptoms in my head, is this Graves disease, or am I going crazy or something.

In nov 2010, I'd been with my boyfriend for 6 months, and I moved abroad for a job, and that is when I remember changing. I remember moving abroad (for work), and constantly crying. I blamed the move and being away from my boyfriend for this. I lived abroad for 2 years, and during that time I had a really short temper, people would just instantly irritate me and i couldn't calm down for hours. I always felt tired, gained around 1 - 1.5 stone in weight. I found it difficult to connect to people and make friends, and ended up spending a lot of time alone, and having bouts of crying and really feeling low.

In Aug of last year, the long distance and my quick temper and mood swings finally took its toll on my relationship and that ended, and i plunged into 2 weeks of (what i don't feel confident in calling) depression. Stayed in my bedroom of my flat, was signed off work, and didn't speak to anyone. Finally told my bosses that I needed to come back to UK - which they did within 2wks. I'm so grateful that they did!

From Sept when I moved back to Mar this year, my mood improved. But I struggled to do sport, and if I did 2 hours of basketball I would then have to sleep the rest of the day - just felt exhausted all the time. Felt kinda numb. Still spent a lot of time alone.

Went to the doctor in Mar who sent me for tests, and was diagnosed with Graves disease and started medication for hyperthyroidism with 80mg propranalol and 30mg carbimazol. I started off feeling a bit worse, but then had a good 1.5 month of feeling great.

Since moving back to UK, I haven't got a circle of friend and don't live close to family, so I took this opportunity to fire all barrels and do french class, work overtime, play basketball, do yoga. Plus, I recently was away for a conference with work for a week. Then this weekend, I felt terrible, losing my temper, constantly crying, really low mood, just feel trapped because I'm not enjoying life at all, and I just want to feel some peace. I feel so lonely, but I just can't stand to be around people - just makes me feel exhausted.

So... is this what Graves disease does? Is this what I should be expecting?

Anytime I talk to my family about this, I feel as if i'm making a mountain out of a mole hill, and they still tell me that maybe my mood is because of PMT, or they say that I should just perk up. But, saying that to me makes me feel like i'm wandering in the dark trying to find something that doesn't exist.

Should i just buck up? Is this really not that bad? Or maybe i'm crazy - just don't know what to think.

Would be grateful to hear anyone elses experiences.

sorry for the essay

15 Replies

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  • No you're not crazy. I know just how you feel, I was diagnosed with Graves in November last year, I found I could be in a room full of people and couldn't even be bothered to talk. I used to wonder what had happened to the me I used to be. When you say you feel lonely but can't stand being round people and you lose your temper etc - well that could just be me. I fell out with someone who has been a friend and colleague for a long time because I was so intolerant I spoke out about something I should probably just have ignored ( what I said was justified and true) my friend just didn't see it like that so end of friendship, I went prepared to apologise or back down and knowing her that is what would have had to happen, she went and took another friend etc so I lost out big time. I had a big bust up with my difficult to get on with arrogant brother, he said something terribly, terribly unkind and I had got to the point I wasn't prepared to put up with it any more. He is nuts but without the benefit of Graves :-) so between that and being able to sit in a room surrounded by people and not feeling like having a conversation. People really irritated me and I just couldn't be bothered with them, my husband used to (still does?) say I was cynical and somehow I suspect he didn't mean that as a compliment!

    I was so intolerant I even snarled at a bunch of (older) pensioners who stood around and didn't get on the bus we all seemed to be waiting for ' look, are you going to get on that bus or are you waiting for something else, because if you don't the driver will close the doors and drive off without us' . My husband was once again mortified, I could see him trying to look as if he didn't know me.

    Anyway, I went to my doctor one day, blood tests the next and day after that was told I had Graves, got Carbimazole, a consultants appointment was made as was ne to get more bloods one in three weeks. Did all that, had the carb doubled, then saw my endo's senior registrar at the end of Feb, had one underactive by then, started levo that day, saw my actual endo in April who was great, she REALLY understood how I felt which cheered me up so much and have been muddling along ever since. I found this site which is amazing and honestly even though you dont think you ever will, you will feel better.

    You're not crazy, even though you sometimes feel like you must be mentally ill or be developing some sort of dementia, you can't buck up either, but once you get treated and get more well you will gradually realise you feel a lot better than you did.

    You need to be really kind to yourself, just do the things you want to do and don't worry about the things you might think you 'should' do. I got really selfish and just refused to do anything I didn't want to do and I found one of the worst things was my other half saying he knew how I felt - he clearly didn't or he wouldn't have suggested I could entertain our neighbours at a day's notice over Christmas! He used to say things like 'you'll be fine' and I used to be so mean and say 'how do you know?'

    You're definitely not crazy, when you start to get better and look back you will realise just how ill Graves makes yu feel.

    Sorry about my essay too :-)

    (((Big hugs ))) Liz

  • Thanks Liz - It does sound really similar. Especially about blurting our a criticism that most people wouldn't say. I did that a lot with my ex. (although I don't think it was all down to graves, sometimes he was just a bit of a boob, which didn't help things). In fact, I've had a version of each of those.

    I will come back here more often and read more. I often feel like i'm being selfish for admitting to myself or others for having GD. I tell myself that there are other people with other illnesses worse than mine and so I really shouldn't be so pathetic or moaning about it. I feel like everyone thinks this too. Even now, i'm thinking that severe GD sufferers might be reading this, saying that i've no right to complain compared to them.

    Most likely no one is thinking that. But whether they do or don't, thinking about it only makes me worse. I do need learn to be easier on myself.

    Anyway, I won't go on. Thanks a lot Liz {{big hugs}} Laura

  • Oh. My. Goodness. Reading this has given me a bit of a Eureka moment. Both of your posts resonate with me so much. I recognise so much from my own situation over the years... Perhaps some of my problem could be Graves!! I was diagnosed hypo in September last year - but only 2 or 3 weeks ago was told that my antibodies were high - TSH <0.04 (0.35-4.0), FT4 15.5 (9-21), Total T3 2.4(0.9-2.5), Anti-TPO Ab 167.4 (0-6). I know almost nothing about Graves as I've been concentrating on learning as much a I can about hypo, but need now to do some more digging. Thank you both so much for this - I'm so grateful that you've posted this. It feels very familiar - I'm a 'blurter' too - and people always say that I say what other people only think!! Also, one of my sayings is 'oh, I just hate people' when I've been particularly intolerant... And I also feel that I'm staggering around in the dark, have been told PMS, 'buck your ideas up' by family ... Off to look up Graves. I'm seeing Endo on Thursday too, so may be perfect timing to speak with him... Thank you both! Karen.

  • Hi Karen, I'm not normally as fierce as I described myself above, Graves seems to have brought out my grumpy, intolerant side. And yes, I used to mutter 'Idiot' about people all the time.

    In my case I lost quite a bit of weight but I was doing Weight Watchers - normally with great difficulty - no matter how 'good' I was some weeks I just didn't lose anything, I've had weight problems in the past and I would have spells when I just couldn't get enough food to eat. Then I came back from holiday at my goal and I got the distinct feeling my leader was suspicious about how I had managed, I thought it was all the grilled food and salads plus masses of walking and cycling we had done - now I know better.

    Trouble was because had lost weight and was trim I looked better than I have ever looked people just couldn't appreciate how totally rubbish I was feeling. I worked on that too making sure that people knew that even though I looked ok on the outside I wasn't inside. After a while that sank in too. Fortunately Im way too old for PMS and no one had the nerve to tell me to 'buck up'.

    I was always so tired before I was diagnosed and never wanted to do anything, especially in the evenings, we have elderly pensioner friends who were more active and stayed up later than me, in that respect I used to go out at night just because I couldn't face saying 'I'm tired' yet again - it sounded so pathetic. Once I knew why I felt tired I was fine about saying I couldn't do things. I look back and can't imagine how I kept going for so long because I felt so ill for such a long time.

    I was so nervous and jumpy too - the absolute worst ever car passenger - I was a nervous wreck on motorways - always yelling 'look out!' and i hated it when my driver went faster than my body could cope with and that wasn't very fast at all.

    The August before I was diagnosed we drove to the south of France with me alternating between backseat driving fom the front and chewing Rescue Remedy pastilles and spraying Rescue Remedy in my mouth to try and distress myself. I realise now it was all down to Graves.

    If it is any help, I started off in November 2012 at

    TSH - < 0.03 (0.35 - 5.5 ) Below low reference limit.

    Thyroid peroxidase antibody level (XaDvU) 167. (0.0 - 100.0)

    Free T4 - 15.6. (10.0 - 19.8),

    no FT3 results - lab didn't do them!

    Good luck on Thursday, let us know how you get on,

    Liz :-)

  • stopthethyroidmadness.com/g...

    This is a good website based on the book "Stop The Thyroid Madness".

  • Thanks a lot for this page. This one really helps : stopthethyroidmadness.com/t...

    but i'm hyper not hypo. not sure what that means. have to read some more and bring up with endo - I see them again next week.

  • Hi Laus, yes, Graves has the hyper aspect. Read on.

    I can feel very dark when my thyroid is low. These days, people are fearful of strangers now with all these terrorists on the loose, it's difficult to move to unfamiliar places. Now I've probably made you feel worse, lol. Don't beat up on yourself, you are striving to get better!

  • I had Graves' from the age of 13, and it was horrible. I lost friends, every relationship broke down, I was a she-devil in human form. I lost a massive amount of weight with it and also had bulging eyes.

    Whenever I was facing a stressful situation it would get worse, It happened before my exams at 16, 18, before my college exams, whenever I had stress to deal with, I would all but break down and I had agoraphobia. I was unable to leave my home for a whole year. I had a partial thyroidectomy at age 18 and then I went to college 7 years later having been reasonably stable, and it all flared up again in the run-up to my exams, I passed them but truthfully I did not do myself justice. It seemed to settle a bit after my exams, but I was woefully underweight.

    Then I was teaching and getting along well, and it all blew up again, this time it was not going to be ignored! I had hallucinations and was sent to the local psychiatric unit but, to cut to the point, the rest of my thyroid was removed when I was 37 and from that time I have been on Thyroxine tablets.

    If I had not had my thyroid removed, (no amount of carbimazole controlled it) I think I would have been a loner all my life, despite having become a single mum at 20, 2 years after my first thyroid operation. As it is, I eventually married at the age of 47, and my husband thinks I have a truly gentle nature. Perhaps at last the real me was set free!

    Bucking up is not an option. Fighting active Graves' is not something you can do alone. You need to be treated and you need the support of people who can recognise that the abrasive side of your personality is the Graves' talking. The more stress is in your life, the harder it can be to feel positive and happy. It is not you, it is your disease.

    If you look on the main TUK Website there is a section on what NOT to eat if you have hypothyroidism. You can take note of those things, and eat them as much as you like. I am directing you to the section on overactive thyroid, but look at the pink drop-down menu and look around and learn.

    thyroiduk.org.uk/tuk/about_...

    If you post a question about the best diet for Graves', there are some on here who are trying to live with Graves' with diet and natural things. I'm not recommending that you should do that, simply that by getting in touch with them, you can learn and make more informed decisions.

  • Thanks marram - Very helpful. ;-) It's reassuring to receive this support.

  • Now I'm thinking that my nerves might be thyroid related. Tsh normal bp high . I worry a lot and am quite jumpy

  • Hi marram,

    you have done so well to have got through everything you have had thrown at you over the years, it is bad enough having it at my age (64) but when I think of you having it at 13 i really feel for the child you were, it must have been so hard. It is so lovely that your husband tells you you are a gentle soul. I like the idea that the real you has been set free :-)

    I'm sure stress plays a big part in Graves. It might not be the trigger but it sure doesn't help it. and I agree too that there is absolutely no way of 'bucking up' or 'snapping out of it', you are really ill and have to be fixed by a doctor.

    People need to be educated about how hard it is to have a thyroid condition and how much it affects every part of your life, as my lovely endo said ' no amount of reading about it in books or on the Internet can prepare you for how bad you will feel'

    Liz x

  • It's funny because, another reason why I sometimes wonder if I really have this (even though the test etc indicate I do) part of the reason I still try to force myself to think otherwise is that some of what marram said resonates with me. I remember my mum taking me to the doctor because I would want to sleep constantly and could never get up for school - the dr at the time just gave me iron tablets, and I used to have bouts of low mood. Dissertation for uni was a nightmare - my family thought I was having a nervous breakdown. I got a good grade....just! But like Marram, I knew that if I didn't feel so drained, I should have done better.

    But I never thought at any time when that was happening that I was sick.... and I'm wondering how long I could have had this for and not have know. I've had plenty of blood test over the years, would no one think to test for this and see it the same way my doctor saw it this time...?

    I'm inclined to think that this has only recently come on... but I wonder.....

    Also regarding the anxiety (and this will bring down the mood, so i'm really sorry, but I have to ask), I feel constantly worried about life. Just thinking over and over about why we are all here, and what is this all for, and worrying about when my time will come. I'm 29 year old, so I should be thinking other things, but I can't help it. That's what I really hate, as I just feel this fear following me around.

    Does / did anyone else have that?

  • Gosh - I was always going on to my husband about 'what was the point of this life' I felt a kind of 'hopelessness' about life in general and probably mine in particular and I certainly wasn't always like that.

    I have realised that I don't think like that now I'm being treated, even though I probably still need a bit of 'fine tuning' with my meds. I'm definitely not the gloom and doom queen that I was.

    I'm sure I have had this for a long time too, I remember about 12 years ago being tested to see if my thyroid was under-active and then seeing the doctor who seemed surprised said it was OK -, I wasn't under-active in fact I was actually 'borderline overactive'. Knowing what I know now, I should probably have been treated back then!

    You need to get yourself well, then you will stop being anxious and life will be good. Has your doctor referred you to an endo to look after your Graves? Where I live hyper-active thyroid patients seem to see an endo - certainly those with Graves do.

    Liz x

  • Thanks Liz. I've been seeing an endo. i have a blood test again tomorrow and endo apt next week. Hopefully he'll see that meds need tweaking as i've had enough this week.

    I'm very thankful to you, and marram, and heloise for taking the time to respond. Really makes me feel that at least someone believes me when i explain how i feel.

    {{hugs to all}}

  • Not only do we believe you - we've been there too and I for one am way too old for it to be PMT or menopause etc.

    I always write down bullet points of my symptoms / how I feel etc - I'd never remember them otherwise.

    Bye for now, (( more hugs)) keep going, you'll get there in the end

    Liz

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