Possible graves

Hiyah everyone my lovely sister told me about this group. I've had a blood test today as my dr thinks I have graves . It's been a horrible ten years and I still have no clue as to what is going on. Change Drs a year ago and a routine check as a new patient had me sent to hospital with a heart beat of 162. But I've been like this for yrs. racing heart. Sweating all day every day. Pain in every joint I have and I lost all my hair. My eyes started sticking out about a year ago but like I said ex Drs were useless. I've been losing weight and constantly have dierrea and my legs have been giving way without warning. 10yrs ago my dr told me I had fibro after having an accident and hurting my back. I'm so confused and I'm now worrying about my results. What if my thyroid is normal. I honestly couldn't face my dr telling me it's normal and that's that. I also have a lot of problem with my throat. I can't eat certain foods anymore because I end up choking because I can't swallow it down and my memory is crazy. I can remember old things but new things just leak out of my head. Will these feelings stop X

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  • Hi there, I developed Graves Disease 19 years ago (which seems like a lifetime ago!). The symptoms you describe certainly sound similar to what I experienced, especially the fast heart rate. I felt like I was buzzing all the time - it was pretty horrible and quite scary at times - I was either on fast forward or asleep. There were many symptoms and sometimes I'd feel rather unwell.

    Your old GP clearly did you no favours by not investigating, and as worrying as it is, you need to await your test results. Even if you have no thyroid problems, at least your new GP is looking into it now, so you can concentrate on getting better. Keep strong and think how great you'll feel when you and your doc know what the issue is and can tackle it.

    All the best, Claire

  • Thank you so much. I think it was my eyes that made her think graves as they are quite far out and constantly ache. Sounds silly saying my eyeballs ache but they do and always dry. I just want to be free of pain and sleep at normal times. Thank you for your reply x

  • You don't sound silly at all - my eyes did exactly the same thing! I felt like EVERYTHING hurt at times, and when I managed to stop buzzing and lie down at the end of each day, I could literally feel the blood pumping around my head because of my strong and fast heart beat. Please believe me when I say that you are NOT going crazy and that you are NOT alone in your current difficulties 👍🏻

  • You need to be referred to an ophthalmologist for your eyes, sounds like TED

  • No you are not going crazy - I felt so ill - also totally nuts - like I was mentally ill, before I was diagnosed with Graves. My heart pounded all the time, I used to be able to put my hand on my stomach and feel my heartbeat. It was horrible.

    I used to feel as if I had lain down and someone had driven a bus right over me and I was SO tired all the time, I had very elderly friends who had more energy than me, yet I couldn't sleep at night and used to waken up dripping in sweat.

    I lost the strength in my thighs, if I got down to ground level I didn't have the strength to get up again, I thought I had too much in my backpack but it was really my muscles were useless. I lost so much weight too - trouble with that was I looked pretty good so no one thought I was as ill as I was.

    If your eyes are beginning to bulge it does sound like it could be Graves. If they are dry make sure you put in loads of dry eye drops throughout the day - try and get those that are preservative free, I found a facecloth squeezed out in hot water and held over my eyes felt really good. You can buy a special eye bag to put in the microwave and I've got one but I prefer the hot damp facecloth.

    Hopefully you will get a diagnosis soon. Once you start treatment it shouldn't be too long until you feel a lot better. Graves really is a miserable disease. Keep in touch and let us know how things go for you.

  • It sounds very similar to a Graves. Did you get a blood test? If so, please chase the results as the GPs don't contact you automatically if something is wrong as they used too in the past - at least in my area - even for cancer tests. Take care.

  • corny67 contact TEDct they are thyroid eye disease charity and are very helpful with graves/ eye problems/ myasthenia- gravis, weak muscles, swallowing, it was about 12quid membership when I was last on the charity and you get a monthly booklet with question s answers and help. and you need an endocrine consultant who knows about these conditions not just a gp.

    nhs.uk/Conditions/Myastheni...

    this is the thyroid eye disease charity corny 67 well worth joining.

    tedct.org.uk/

  • Hi guys thanks again for the comments I got my blood done yesterday afternoon and had a phone call this morning telling me I had an appointment at 4 today to talk about my results. I'm a little scared to be honest. I have so many symptoms that have possibly hidden what's really going on. The sweats were put down to the menapause as the had a full hysterectomy age 29 and for 8 years they left me with nothing no bone scans nothing to protect my bones nothing and to be honest I was too far down to ask. I have no body hair or eyebrows and very little head hair which I shaved off they told me alopecia ag e 21. , my aches and horrendous pain in every part of my body was put down to fibro even though I was never tested. I had an accident on a bouncy castle about 12 years ago and put 5 disks out but it took them a year to give me an Mri. In that time I'd lost my job and could barely move. So I'm now worried that my dr will say nothing's wrong just go home and get on with it 😢

  • Hope your appointment well and you get some decent treatment. It's not good that they dismiss genuine symptoms by saying it's the menopause or fibro. At least you have been tested now.

    I know I visited the doctor for ages with weird symptoms, the last visit just a month or so before I finally reached meltdown stage with the Graves. That doctor sat and looked at me like I was some kind of a nutter while I was telling her my symptoms - like I was some sort of alien come down and landed in her surgery - I could just see it in her face - and then she said 'I think you're needing your holiday'.

    I came out of that visit almost crying with frustration (and rage!) and said to my husband that the doctor clearly thought I was totally nuts.

    In actual fact it turned out that I was needing a good dose of carbimazole to calm things down followed by the best part of a year on block and replace.

    Anyway, hope things are good for you - actually being diagnosed is good - even if it is for something horrible like Graves - it's a foot in the road to your recovery.

  • Thank you so much and I'm so sorry you were treat like that it's not a nice experience. I hope your feeling better and I am glad I've finally been told why I feel like this. I'm not actually mad X x

  • Just to let you all know. I have graves. It's all brand new to me and I haven't got the results printed off but I will on Monday I'll get a print off. I have to see a specialist within the next 2 weeks and she's given me a 5mg dose of oh I've forgot it begins with c is it carbonizal sorry if that's wrong. What should I expect now X x

  • It is carbimazole. It's an antithyroid drug. You need to make sure you read the patient information leaflet carefully. If you haven't been given one by your pharmacist then you can google and down load one.

    You need to watch out for certain symptoms, you will see them on the leaflet, carbimazole can cause something called agranulositisis which is very serious and which means you need to stop taking it and get as same day appointment with your GP for a white blood cell test.

    When I started the carb my pharmacist came out and told me to take a high dose of vitamin C with it (afraid I didn't ask why - probably because I was we to it all) so I always took 1000mxg slow release vitamin C with zinc.

    There is another similar drug called PTU that you can take instead should you have any problems but hopefully you will be fine, I felt well when I was taking it - with block and replace I was taking 40mcg a day then after I saw my endo (took three months to get my appointment through) I added in the levothyroxine.

    I'd say read as much as you possibly can about the thyroid and about Graves in particular - ask questions - I kept a notebook where I wrote down all my test results - ask for them, you are legally entitled to have them and you need the lab ranges that are printed beside your results. I used to keep all my test results in my notebook, I used to write down any questions I wanted to ask my consultant too.

    I think it is a good thing to be as involved as you can in your treatment rather than it being something that is 'done to you'.

    If you look at the Thyroid.co.uk website you will find a lot of helpful and interesting information that is well worth reading.

    Even after starting carbimazole it took a few months before I felt really good. If you can possibly do it try to get as much rest as you can, you are really quite ill even if you don't look it. Don't worry about housework and be kind to yourself, just do as much or as little as you feel you can.

    Oh and I know it probably sounds odd but don't expect too much when you see your endo - I felt very flat after most of my visits - I don't know what I was expecting but I only found it on one visit - the rest were a bit of a let down. If you go not expecting anything then if your appointments are good it will be an added bonus - if not it won't be a surprise to you.

  • Thank you so much for your helpful information I really appreciate it. I'm used to not expecting much from specialist to be honest. I do want to take charge of my health and I want to be in control for one. Your right I was just the patient and they were the experts but that's not true. My sister has told me a lot more than they ever could. Looking forward to feeling normal and having a life again x

  • Hopefully these will help ease things my doctor has also put me on citilapram which is a mild antidepressant because my night sweats are so bad I take one in the morning and one before bed so if your symptoms don't ease up after a few months it may be worth asking your doctor good luck xx

  • One thing she wrote down for me was my T3 was 21.6 Is that high x

  • Good that you even had your T3 tested, mine was never done on the NHS! Eventually when I was signed off and told should my Graves come back again it was radioactive iodine for me I sent off and had my own thyroid tests done by Blue Horizon and I've been doing that ever since - I mean I couldn't believe they could even consider RAI on the basis of T4 and THS alone. It was the same for vitamin D - not a chance on the NHS, I eventually got my doc to test my B12 which only just scraped into the lower range but they were quite happy with that - even though I have a family history of pernicious anaemia. Now I just order a fingerpick home test and keep an eye on things myself. So good that you've had T3 tested. Good luck on Monday.

  • Thank you for your reply. I was a bit too hot to ask for a print out I needed to get out of there. I just feel more positive today and I feel like a huge weight has been lifted off my shoulders. I don't like telling my family how I feel because I don't want them to worry or get upset however I can honestly say on a few occasions I felt like I was dying That sounds over the top but it's true. Looking forward to feeling alive again x

  • No it's not over the top. People tend not to understand just how I'll you are feeling.

    When I told the kids both grown up and living away from home one said 'Oh ' and the other must have googled it because he came back with 'That's what Misssy Elliot has' and was ok about it.

    They were possibly concerned but I'm not sure they worried all that much.

    Glad you feel better today - I have to say I was seriously worried about my sanity by the time my Graves was diagnosed so there I was an elderly, totally exhausted and mentally unstable lady who felt like she was going to have a heart attack at any time soon.

    Seems hard to believe but you will get back to normal before too long. :)

  • So sorry to hear it's taken a new doctor to get things started I have had graves for five years now and after losing loads of weight through my thyroid going hyperactive it's now gone the other way but all the other symptoms you've mentioned are going crazy I can't stand the heat ,my heart races ,and I've had the hair loss as well as the problems with my legs and so the list goes on and as for my memory at the moment someone can tell me something and if they ask me an hour later it's totally gone !! So it definitely sounds like this is what you have xxx

  • Gosh, I'd completely forgotten I also felt like I had Alzheimer's as well as feeling nuts! That and forgetting what I was saying in mid conversation and having people look at me like I was a bit strange when I was talking to them. Graves has a lot to answer for doesn't it.

  • Thanks for the replys everyone. I'm looking forward to getting some normality back in my life. I literally have slept the last ten years away I would love to be sweat and shake free by the end of the month as my eldest daughter is getting married. I won't hold my breath but how fantastic would that be x

  • Graves certainly does have a lot to answer too. I'm exactly the same. I could remember my bank account details and phone numbers now I can't remember my grand childrens birthdays. Just an update. I'm going to see the specialist on Friday. What should I expect. I'm not expecting much but I don't want them to put me on a high dose of meds as my daughter gets married in two weeks x

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