Graves disease

Hi, I have just Bern diagnosed with this disease. I am starting to take carbimazole. I am an emotional reck. I snap at husband d and son and I don't even realise it. It gets me down as I'm quite a happy soul. This has really knocked my confidence. Put weight and off. On HRT as I was going through early menopause. I get anxious and feel my heart palputaing. I'm 47 years old. My family lives in Spain and daughter is at University so have no female company at home. The lads find it hard to understand. Please any help would be gratefully dppreciated

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55 Replies

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  • Sorry to hear you are feeling so unlike yourself, I have been there too. The Carbimazole will help a lot of the symptoms quite soon, I felt much better in a few weeks. It does take time for everything to sort itself out though and I have not had your early menopause issues but other will advise. Lots of support and great listening here! It's hard for families as they are worried but adjust in different ways. Take care of yourself and hope you are more relaxed again soon.

  • Thank you for your feedback. ☺

  • Hi kazbar_70

    I totally agree with wobbly

    I started on carbimazole about 4 weeks ago my palpitations have stopped and I'm sleeping a lot better

    It's hard when you don't have any support can you join a support group in your area? Or do a new hobby walk/sit in the country side etc something for YOU to relax and lock after yourself, women look after their family's and forget themselves far to often

    Good luck for better health xx

  • Thank you. Yes sleeping is terrible. I look after nursery children so it's a physical job and I'm not getting any younger. I get brain fog alot which is so frustrating as I feel like I'm losing the plot. I've got a goiter too but donot know much about it. Need to get some information when I go bk. I always forget all the information the consultant tells me.

  • Yes I totally understand I do care work and I often come home and have an afternoon nap. I've just negotiated a later start (8 instead of 7) because I found the earlier start to much I'm also coping with a husband going through chemotherapy without any family support, life is horrid at times but try and stay positive it will get better, post about your goiter on here and any blood result people are really helpful and give really good advice with links etc

    You will get there honestly!

    Big hug 😀

  • 🤗😊😥

  • Sorry to hear you've been feeling so bad, as wobblyx said the carbimazole will start to take effect soon and some of your symptoms will get better.

    Have you shared any literature or websites with your other half so he can read for himself what happens when your thyroid doesn't work properly?

    It took a while for mine to get it and even now he doesn't realise sometimes that I'm "off" or "not myself" because my thyroid levels are off.

  • Read some bits and pieces and he trys to be understanding but I just think he really doesn't understand. I look ok in the outside but inside I'm all over the place. I get shaky with it too. Just have to be patient till the tablets start to work. Thank you for advice and help x

  • Hi I'm waiting to see a specialist! In July!!!!!! Total nightmare. How I'm still working I do not know. No sleep, anxiety like I've never experienced before. Specialist has advised my Dr to start me on 20 mg of Carbimazole and beta blockers. Totally freaked out like you. Scared witless. But take heart at least people on here understand. But I'm alone so could do with a friend at this awful scary time. I'm so scared to take any medication. Struggling to sleep wake up all night heart racing. Awful awful awful. Totally understand where you are coming from.

  • There's always someone on here you can chat with, please don't be too scared to try the meds they will honestly give you some relief from the onslaught of your thyroid. We've all felt like you at some point and I can honestly say it does get better x

  • Thank you. I'm at that stage where my life seems upside down and no one understands how I feel because on the outside I look healthy.

  • The other day at work someone asked me if I'd had too much coffee, they didn't realise what they'd said. Like any health issue we all have good days and bad days x

  • I've always been on the go but now I get these spurts of energy and people at work say slow down. It's hard to do when it appears. I feel I get patronised because they don't get it. Especially when she is a young teacher same age as my daughter. It really doesn't help.

  • I'm sorry to hear your in the same boat. I can't the beta blockers because I'm now asthmatic. I'm the same when my heart races it scares me. Sleep is the worst. I get you. I've been getting lots of messages which makes me feel better in a sense that I'm not going mad. Here is an example. I booked appt for blood pressure but when I went it was the nurse. I went to the reception desk to be told I had booked for blood tests not blood pressure. I was with my husband. I thought I was losing g the plot. I did however get to see the doctor. I went on about how I was feeling and that I am getting diagnosed at the moment which they think is graves. Anyway to cut a long story short. I still never got blood pressure done and that was the whole point of going. I broke down as I was leaving. I told my husband I don't understand what is going on in my mind. It really worried my which doesn't help because of the anxiety I get. Well see what the tablets do for me. I've been told it takes a few weeks

    Only been on them 6 days. Here for you x

  • Hey Kazbar

    I get it .. only too well and I m sure it all comes as a shock to you to be feeling this way .. but please try to stay strong and focused .. it's so good that your husband is with you on this ! Says a lot for him as others are not always so lucky

    And are never understood at home where it sometimes looks like we are malingering ! As if you would want this !!!!

    My husband helped me so much .. attended all my Endo appts with me .. mostly because I could hardly remember a thing I was so anxious !

    I could hardly string a full sentence together

    ( brain fog )

    You will , if you take the time to rest , start to feel a big difference really soon .. 3 weeks after I started Carbimazole I knew it was working . It was slowly dawning on me that something was easing ... and it did

    I had a lot of pain .. pain in muscles the big muscles in arms legs and shoulders mainly .. but my poor body ached.

    I had very many symptoms ...

    But slowly slowly and with the help of several supplements to replace the things that Graves' disease had robbed my body of .. I began to get my life back.

    Your thyroid Gland is precious .. it is the antibodies of your immune system that start to go wonky and begin to attack your Thyroid that's the issue .

    And since 80% of our Immune system is in our Gut .. then that is where we should address the issue ... in our Gut !

    I am now Euthyroid thank God .. and enjoying good health once again .. the pain was the last thing to go .. but I'm so much better and so much happier .. and Yiu will be to ... sooner than you can believe

    Empower yourself and read everything you can about Graves' disease and how you can keep it under control ..

    But right now it's important that you take take the time to rest .. every day , don't just sit , but lie down whenever you can , reserve what energy you have, even if it means that you only do one task a day !

    Don't worry ... rest

    Take care Luvvie

    Luv mx🌹

  • Thank you so so much for the advice and kind words. It means alot to me. I'm off work this week so intend to do just that. 🤗🤗🤗😘

  • Thank you and hope you get sorted quick. I totally get you too 😉

  • I used to be awake until 2/3 In the morning now I sleep for about 3hrs and am awake from 2am. Feel exhausted but can't even catnap. Can't get hospital appointment until September !!!

  • Oh no! Seriously? Sept? I thought July was bad enough! If you want to talk please do. Must be exhausting for you. Have you been given any medication to help? Please feel free to off load! 😀😥

  • I'm on Carbimazole which seems to be working. Had blood test today so see what happens.

  • Do you get angry at the slightest thing? Husband finished off some crisps from a family gathering at the weekend I didn't want them but got snappy because he had them 🙄no sense to it at all. Just made me angry it's ridiculous

  • Yes. I get that. At work I get so irritated with adults too. Frustrating isn't it x

  • Ha, ha yes. That was me. I was waiting in the rain for a P&R bus. A group of elderly pensioners were in front of my husband and I. We're pensioners too but not as old. Anyway, the bus arrived, people got off and the pensioners just stood there talking and playing with their phones etc until I said "Are you actually going to get on that bus or just stand here until it closes the door and drives off!'

    Husband just looked at me like he wished he was somewhere else and the pensioners stared at me and headed for the bus door and as I got on the guy I spoke to muttered something about people in a hurry. I imagine probably muttered back 'idiot'. Yes, I was grumpy and angry a lot at the beginning.

  • Such a relief to know that! I can turn suddenly for what appears to be no reason! Get so impatient in the shops as well. Can't stand grizzly kids either never used to be like this 😒

  • That's the hard part. It's not me.

  • Sorry got wrong end of the stick. I'm back in 8 weeks. Started on Carbizole. 6 days now

  • I'm frightened of everything at the moment. Keep fixating on things. I burnt my mouth a few weeks ago and it is taking ages to heal had to go to the dentist to make sure it's not cancer. Awful place to be mentaly.

  • I get days like that when you are frightened that somethings going to happen. Things like being on my own and dying 🙄why would I start thinking that

  • It's really hard. Your mind feels like your losing your mind. I'm on 20mg of Carbizole and after a few weeks now I feel am starting to feel a little better. Hope you get sorted. I've eventually come to terms with it which I found frustrating. Take care

  • GP has just cut mine back to 15mg. Got to wait another 3 weeks for blood test. Have to do most of my housework, shopping etc in the mornings as that is when I'm at my best. Are you sleeping any better? I still wake about 4am then just doze I and off after that. You are right it is hard.take care.

  • I've just started so my blood tests aren't for another 7 weeks at hospital. I sleep somewhat better but still wake up about 4am.

  • Take care x

  • Kind words that mean alot. I understand what

  • Kind words I understand the isolation to well. This is awful and a lonely experience. Even though your in Spain I'm here as it helps having others who understand. I have not been diagnosed yet. But I'm told they think it's Graves. NHS Drs are so vague.

  • Had a missed call from the doctor today. Anyway picked up voicemail had to go for appointment T4 has dropped to 6.7 and TSH is now 10 so Carbimazole dose reduced to 15mg repeat blood test in 4 weeks we shall see.

  • If it's any help my first post on here was to say "Will I ever feel normal again?" And the answer was "Yes" and indeed I do. I used to think I had lost the me I used to be and this strange angry person had appeared in my place.

    I started with 20mcg of carbimazole for four weeks, had a blood test and got a letter from my endo who I hadn't seen at that point. She said to increase my carb to 40mcg. I did that for the next two months, became hypo which wasn't much fun at all. I think I stayed grumpy and horrible and felt pretty rough - well very rough, until I saw my endo and was given levothyroxine to take along with the carb.

    Once I started on that, I saw my endo regularly and had my Levi increased until I was taking 100mcg, still along with the carb. When my doctors were happy with my bloods I stopped the lot and I've been in remission ever since.

    Eventually the palpitations settled down - a lot of people are given beta blockers to deal with the palps but I have asthma so I couldn't be given them and had to sit it out.

    You need to be really kind to yourself, you probably don't look it on the outside but you are really quite ill and that makes it hard for people to get into their heads. My husband and friend next door couldn't decide on a date for a Christmas get together with our neighbour's so he came in and said that he thought we could host instead! I was only diagnosed in November - well if I say I lost it that would be a complete understatement. I really lost it big time. I felt like I was turning into some sort of monster. I know he knew how ill I was feeling but I don't think he actually got the message even though he shopped and cooked etc.

    Anyway, I found this site and never looked back. Loads of people here who knew exactly how I was feeling. Loads of support.

    Make sure your vitamins B12 and D along with ferritin and folates are high in their ranges. My pharmacist came out when I started the carb and told me to take vitamin C with it so I always took 1000mcg vitamin C - mine had zinc in there too. I take CoQ10 as well. I cut out junk food and tried to eat well, lots of fish, fruit and veg. I was determined to do things I liked so I stuck with my gym because I liked the people I met there, I stuck with my Pilates but my teacher is a qualified physiotherapist and she really helped me.

    My GP and endo wouldn't test for vitamin D or B12 or T3, so when I discovered Blue Horizons accredited labs through TUK I had blood tests done regularly - I still do because I went totally gluten free over a year ago to see if that would help eliminate my thyroid antibodies (it did!!)

    It was a long time before I went back to long distance walking but I can do it now.

    I jotted down how I felt every day, just a few lines in a notebook. I also kept a note of all my blood test results and any changes of medicines. That was really useful, both when dealing with my doctors - I needed an increase in Levothyroxine and was able to use that to persuade my GP to give it to me, I don't think she wanted to interfere with what my endo prescribed. I used to jot down any questions I had for my endo. It was also interesting to be able to read back and see how much I had progressed over time.

    I'd say hang in in there, take as much rest as you possibly can, my husband did all the shopping and an awful lot of cooking when I was at my worst, just be very kind to yourself and time will help you, oh and keep looking on Healthunlocked TUK - TUK has its own amazing website thyroiduk.org.uk/tuk/index.... you will find loads of good information there too. Good luck, you're definitely not alone.

  • So tearful and frustrated at mo. Get hypo. Today husband went shopping. While he was gonever I cleared out two bedrooms with clothing I didn't want. Just want to feel normal. This is so hard. I feel.useless. I'm so independant and I'm the one that always looks after everyone first. He's hard to turn this around. I'm back to work with little onespecially tomorrow. I find it physically tiring and the teacher is only 23 and still learning. I get irritated recently which isn't me as I'm a patient person. This is bringing me down. Put weight on and feel crap. It's not a quick fix and that's what's in my head. Think I've been taking this lightly. This group is great because I'm learning and don't feel lonely. My mother lives in spain and daughter moved out with yrs now. Have two men in .your life at home but I find they u derstand to a point. Hubbie gets frustrated because he does thinks to help me but as soon as he's not there I go on a hypo. It's like having OCD a bit when this happens. Thanks x

  • Newbies together.

  • That is so helpful. I don't think people understand how I'll we can feel at times. I'm usually quite hyper in the morning and then it can take a nose dive. Hopefully after 4 weeks I shall be taking Carbimazole and Levo and shall be feeling better. Can't get Endo appointment until Sept . I start with good intention of eating more fish and beg etc but then find I'm too tired to be bothered. Wish my husband could understand it all. Trouble is we look ok and we are on our feet so therefor we must be fine !!!!! Get very dizzy as well.

  • This is tough. So much to learn but I don't want to be obsessive.

  • Did you feel better when you took a combination of Levo and Carbimazole ? Feeling very flat at the moment and tired. Find it difficult to make decisions. Can't think straight some days. Always asking what day is it 😄which is hard when you are so used to being on top of things.

  • Wow what amazing responses. I'm totally out of depth with this. Everyone can seem to read their results. I have not my even seen mine. 3 different Drs have told me different things. 1 told me my levels where just slightly over another said not very high another said they were not the highest she had seen but they were high! I don't even know what the hell has caused this all I know is after an ultrasounds stressful few months I came down with a cold last Novemeber and I have not felt well since. My depression at Christmas was awful but I thought it was because it was my first alone after my mum died and partner left at the same time. I just could not get on my feet I was really ill with a fever in March and then palpitations really kicked in April, just been crap. My ex said it's just hormones and you just need to get on with it. Easy to say when you don't work and have to drag yourself off out at 7.30am!!!!! Lol. Just feel I'm up to my neck in something I don't understand. I'm frightened and alone I'm petrified of taking the tablets I

    shake uncontrollably when I have to take one. Awful.

  • I knew the feeling. My palpitations are horrible. I can transfer take beta blockers as am an asthmatic now. Brain fog. Crying, mixed up, irritated, feel no one understands etc. I've been told my T3 is 20 but do you know what T4 is. When I go next time I need to write these down to understand what is going on. I had pneumonia back in February a d not been right sInce. I'm the

    Not the same. Enjoy person. This has worn me down

  • Its like finding yourself in the middle of nowhere trying to get back home without a map. Lol. My anxiety is what's getting me down. I have got beta blockers but I'm to scared to take them. This is why I'm not a drug addict😀 to scared. I'm dying for a glass of wine but I'm to scared to have one now I'm taking carbimazole. This sucks. How are you finding the carbimazole? Oh I'm not to worried about the brain dog I was like that before, as my boss would tesrify! 😁😕

  • I have found the Carbimazole has worked really well. The palpitations stopped the shaking stopped. It's not all rosy but levels have dropped and medication cut back. I've. Been put on citalapram for anxiety as I have been worrying about ridiculous things I gained 1/2kg and panicked🙄 Still not sleeping all night and am full of energy first thing then by mid morning it's gone. Will see what blood test brings in 4 weeks time.

  • I do not know what any of the numbers mean. I'm useless with numbers!!!!

  • I need to get used to all this. It's new to me too x

  • Hopefully the carbimavole will start to help soon. Have you been diagnosed fully?

  • Yes. I have hyperthyroidism in turn I have Graves disease with my blood results. Only recently. Just need more information about it all though. Trying to contact email or terms with this too. Just found out my prescriptionsc are all Free too when your diagnosed.

  • Even in Spain? That seems to be the same as me. Ive had such a good day today and now my anxiety and palaptationsn have kicked in just as I'm off to bed typical. Feel absolutely lousy and so frightend. My eyes are dry and itchy my hair feels bad and my skin is rough. Seems I'm gonna be so how for a long time looking and feeling like this. 😕😅

  • Enid1968,

    If your eyes are feeling dry get your self some preservative free eye drops - from your local optician - they are likely to have samples that you can try until you find one you like - or I sometime buy them from Amazon. Use them several times a day - not just once or twice and keep using them even when your eyes feel ok. I also have a thing called an eye bag that I heat in the microwave and lie down with it over my eyes, that feels good. You can use a hot damp face cloth but it cools faster than the eyebag.

    For my hair I used to use a Kerastase shampoo, can't remember which one but it was for scalp health, now I use Plantur 19 and I always use a serum and face cream. I like Lancôme, it's not cheap but it's my indulgence and I figure with Graves I need a treat.

    I boost my magnesium by bathing in magnesium flakes but I find it's quite drying. I discovered Aveeno spray body moisturiser (Boots) which I really like. I also love the smell of Nuxe body oil spray - the regular one, not the on with gold sparkles! (M&S and other places) plus it makes my skin look much less dry.

  • I understood that prescriptionswere only free with hypothyroidism. Are you in the U.K. ?

  • In the UK, you are correct.

    Full details here:

    nhsbsa.nhs.uk/exemption-cer...

    The only argument is when block and replace is used - we have seen it looked at both ways. Yes - it is covered. No - it is not covered.

  • I'm in the Uk.

  • **single

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