new to Graves disease

Hi, I'm hoping for any insight on Graves disease. I was first diagnosed with Sjogren's 2 years ago and recently within a month have been having hyper thyroid and now left eye swelling. At the time I found out about my autoimmune results, my thyroid was also overactive but that seemed to go back to working normally or at least normally enough I didn't have anymore symptoms. Unfortunately over the last few weeks I was hit pretty hard with fatigue, fast heart rate, palpitations, hot flashes, muscle weakness and nerve twitches. now my left eye has swollen. I've had an ultrasound of my thyroid but I do not know the results yet. I have been referred to an endocrinologist and I'm waiting for an appointment to be made. At this point, I'm assuming this is Graves disease as I already have autoimmune issues. I've done a lot of research on treatments but as I am waiting to even be seen by a Doctor, I'm very concerned about my current symptoms and have many questions. At times, I do not feel so bad but then all at once, my heart races, I feel sick to my stomach, headache, hot flashes over my face and forehead with muscle aches in my chest, arms and legs. It's scares me but obviously physicians aren't as concerned as I am. does anyone else experience this and should I just try to relax and wait for it to pass? Once you are established on medications, do these awful symptoms come back? any comments are welcome. thanks so much.

update: not sure if editing my post will reach everyone or not. I had my appointment with the endo last week and he ordered more thyroid test. still waiting on one of them to come back but all the other test TSI, TSH, T4 and T3 were all normal. I believe the TSI indicates Graves? It's normal so if I don't have graves, what's causing my eyes to bulge? even CBC counts are normal. I did start feeling a lot better so I'm assuming my hyperthyroid was due to my Sjogren's. Even though I feel better I'm still having a lot of lymph node swelling, random muscle aches all over, still slight twitching in my hands and feet and occasionally what I'm thinking might be heart palps. I'm not sure though. What happens is I feel like my heart skips a beat or is off and I catch myself immediately trying to take deep breaths as if I can't get enough air. It passes in a few seconds and has been happening once or twice a day. I thought I was having palps because of the hyperthyroid but if that's returned to normal, what is causing it? Does it sound like a heart palpitation or something else? Could it be the autoimmune effecting my heart instead of the thyroid? any advice please...

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  • This is very interesting , my neice has just found out she has hyperthyroidism , with weight loss severe palpatations and generally ill. She is with the endocrinologist monday to see about radioactive iodine. She has another autoimmune disorder and there has been no mention of graves disease. She has had to take time off work as cant take some of meds for the palpatations. I really hope you get this under control as it is bad enough having 1 autoimmune condition without finding out you have another couple added on. If you are feeling worse i think you should contact your doctor as the symptoms you are having are very distressing. Take care xx

  • I'm assuming Graves' because of the swollen eye. As far as I know that doesn't happen with any other cause of hyperthyroid. did they determine the reason for her being hyper? I believe there are additional test to confirm Graves so maybe they've already ruled that out for her.

  • I didnt know graves diseease could affect the eyes until my sister mrntioned it could. My neice does not know reason for her hyper yet hopefully that will be discussed next week. I am hypo and my aunt had her thyroid removed , ithink it can run in families. Do you think yours is connected to the skogrens?

  • I hope everything turns out ok for your niece. I really don't know what's caused mine. I had a hyperthyroid 2 years ago when I was diagnosed with Sjogren's but it went back to normal so I suspect it has been that way this whole time but not enough to cause me trouble or maybe only flares up occasionally. I'm still waiting for my first endo appt. Are you on thyroid medication and does it keep you balanced? Is there any specific cause of yours being hypo?

  • Im on a relatively low dose of thyroxine and has been stable for about 5 year. Was just disgnosed with sjogrens last year but probably had symptoms for 5-6 years , also have joint swelling an pain and muscle pain.dont know cause of hypo. Its a bit like what came 1st the chicken or the egg! You look after yourself and rest plenty­čîĚ

  • Does she smoke

  • thank you! I'm trying. You take care and don't forget your bath water! :) :)

  • Hi this is a cut and paste I wrote for someone else the other day with edits just for you :-) I had Graves, Hashis, Thyroid Eye Disease (TED) and thyroid cancer. I had a TT in 2011 and I declined RAI.

    Welcome to the rollercoaster that is Graves and the circus that is the treatment!

    Sorry about the Graves, it's no picnic. First of all, what is your GP doing for you RIGHT NOW? Get copies of your blood results - specifically the TSH, FT3 and FT4 and post here if you can. If you have palps and fast pulse, you are going to the loo a lot and have fine tremors in your hands, anxiety, panic, and generally just feeling wired, you need to be on medication NOW. The very least your GP can do is put you on betablockers (these protect the heart and slow down T4 to T3 conversion) and also he should be on the phone to the endo immediately, regardless of how far away your endo appointment is and get you on some carbimazole NOW. Carbimazole (or anti thyroid drugs) slow down your thyroid, and it also tamps down antibodies. It's a powerful drug and needs careful monitoring but you need to be helped now.

    Secondly you need a referral to a specialist TED eye doctor NOW ... if you smoke, you must stop immediately as this will really aggravate your eyes. You must NOT be allowed to go HYPO at any point (easy to do on ATDs, they work fast) as this will vastly worsen your eye disease. If you are in the UK then Moorfield's eye hospital under Prof Geoff Rose is the best place for you. That needs sorting out asap. Meanwhile go to the pharmacy and get some lacrilube for use at night, and some eye gel, tell the pharmacist what your condition is and they should be able to prescribe some gel tears to keep your eye from feeling too gritty. Your eye doctor needs to work in tandem with your endo to ensure you are stabilised and brought under control. RAI is not recommended if you have eye disease as it can significantly worsen the antibody activity (this means they will push you for a TT, more on this later ... a TT is a very very last resort).

    As for endos, there is not a lot of love lost between most thyroid patients and their doctors, but there are some good ones out there. Main thing is that your doctor is LISTENING to you and is your partner. You want to ask about antibodies, and make sure they test the full panel, so TRAB (or TSI) - these are TSH receptor antibodies and are diagnostic for Graves, also TPO (60% of Graves patients have TPO antibodies, although they are usually found in Hashimotos disease) and TgAb (thyroglobulin antibodies) - if you have all three, you have hashis and graves which is harder to control, but important to know. You might find they are resistant to this idea as you have TED so they already know you have TSH Receptor antibodies (this is what happened to me, and I was left a long time feeling like holy hell as I had two concurrent autoimmune diseases going on, and also this is how they missed the cancer) but stick to your guns. You need to know. From here on out make sure you get copies of everything, and make sure all letters about you are 'cc the patient' - these people work for YOU and for YOUR welfare, all data pertaining to you, belongs to YOU.

    They might want to do a scan, an iodine reuptake scan where they use a tiny weeny amount of radioactive iodine (don't worry about this, it's a really small amount) to scan the thyroid and see if you have nodules and what is going on in your thyroid. This is a good idea.

    Also, remember that things going a bit 'too fast' in terms of your body and your thoughts, is part of your disease, it's not YOU, so important not to rush into irreversible decisions. Endos seem to be fond of removing the thyroid or Radiation and they are obsessed with 'remission' but there's no reason you can't stay on low dose anti thyroid drugs (ATDs) for years, provided you are stable and your blood results stay in normal range and your liver enzymes are normal - you might also want to look into low dose naltrexone, this might also be beneficial for your other auto immune issues.

    You need to be regularly monitored, with blood tests every two weeks ideally as it's easy to overshoot with ATDs and being sent hypO is no fun at all. Graves disease should be monitored by the FT3 result, not the TSH (as you have TSH receptor antibodies, so even if signficiantly hypO your TSH can remain suppressed, any doctor treating you by your TSH when you have Graves disease, run, run, run as fast as your legs can carry you!).

    You might want to ask about block and replace also, which is when they give you enough ATDs to shut the thyroid down, and then replace with levothyroxine, some Graves patients prefer this option.

    Also, as your digestion has been going too fast, and your body will have been using up nutrients and co factors too fast, it would be good if they test your iron (full iron panel), vit D, folate, B12, zinc etc as active graves can cause imbalances.

    You might also like Elaine Moore's website re Graves

    Write things down in the appointment as as your numbers fall you will find it harder to remember things. And remember, the victim is your thyroid, and the perpetrator is your immune system ... killing or removing your thyroid doesn't mean you won't have Graves, so perhaps looking into ways you can calm your immune system and reduce stress will help.

    But your immediate priority is to be safe, and your GP can help with that by prescribing betablockers and ATDs as an interim until you can get to the endo. You might also want to look into L-Carnitine, this slows down T3 to T4 conversion (again you need to monitor how long you stay on it, as it does work, and you don't want to push your body into hypO). Magnesium (I like mag chloride) is good for palps as is soaking in a bath with magnesium flakes. Take it very very easy, you are very seriously ill and the blase manner in which the illness is treated is a source of great annoyance for most of us.

    Keep us posted!

    Girlscout x

  • PS Graves disease affects EVERY system in your body, and really does impact the personality as the greatest number of T3 receptors are in your brain. Being awash with toxic levels of thyroid hormones (and then being crashed into hypO if you have a stupid doctor) really does affect how we feel on all levels. My doc made me have a post it on my mirror - 'the problem is the problem, and not ME'.

    I mention this because Graves really can cause havoc in our relationships and lives and can be the source of a great deal of regret and shame when we look back and realise we were running around with our hair on fire and we didn't know it.

    I'm being tongue in cheek, but now is not the moment to leave your husband, start an affair, sell the house, tell your boss you always thought he was a prat, or jack it all in to start an organic commune, or ANYTHING RASH. I once dragged my brother to Ikea and made him build six floor to ceiling book cases in an afternoon because I wanted a 'library' for all my books - looking back, I was manic but at the time it felt entirely sensible!!

    I've also said things that I cannot unsay because my stress tolerance was ZERO and I was just hyper beyond words. It's difficult for the people around us to understand that this is not US but our ILLNESS. Sometimes it's also hard for us to understand that we are poorly - I used to have horrible angry outbursts, and whilst I was genuinely angry the way I dealt with it was beyond my control, as my system was on overdrive.

    Don't do anything rash and that includes agreeing to any drastic, aggressive and irreversible treatments - wait until you are stable. :-)

  • thank you so much for your reply. So far my GP has done nothing but refer me to the Endo. I don't think they even know what to do. He first suggested I contact my Rheumy to treat it. I already had contacted her and she told me a Endo would need to get my thyroid under control and she would continue to treat me for Sjogren's. I had thought to ask the GP for a beta blocker but my symptoms get better then worse but both GP and ER doctors said I was stable. So far my first thyroid test report done at the GP on 9-16 said

    Thyroid peroxidase antibody result is 1 (range <9 IU/mL

    T4, Free result 1.3 (range 0.8-1.8 ng/dl

    THS result 0.23 (L) range > or = 20 years 0.40-4.50

    Anti-Thyroglobulin antibody result <1 range < or = 1 IU/mL

    I had a second thyroid panel done and an ultrasound of my thyroid at the ER after my left eye started to swell. My GP told me to go to the ER for this. The results are below.

    T4 Free result 1.28 ng/dl range 0.76-1.46 ng/dl

    TSH result 1.10 ulU/mL range 0.36-3.74 ulU/mL

    ultrasound of thyroid results


    Right thyroid lobe: 5.4 x 1.2 x 1.8 cm. No discrete nodule is seen.

    Left thyroid lobe: 5.3 x 1.3 x 1.8 cm. No discrete nodule is seen.

    Isthmus: 0.3 cm. No discrete nodule is seen.

    No obvious cervical lymphadenopathy is seen.

    Parotid and submandibular glands are unremarkable. (doesn't appear they found anything wrong)

    On my first thyroid test, GP said my THS was low but it appears on the second test done at the ER it's within normal range but I still feel the same. I go up and down with the same symptoms. I don't know what to make of it.

  • That's strange. Ok so you don't have hashis. Did they test the TRAB? (TSI)?

    The eye involvement would point to Graves but by blood (at the moment they drew it) you are NOT hyperthyroid and with positive TRAB you'd have a suppressed TSH. Yours is detectable and not suppressed.

    What country are you in?


  • I can't find any TSI results. The eye involvement and the fact that I've already had an autoimmune for sometime makes me think Graves and at first my TSH was low was but last test it was normal. Not sure what to think. What does the TSI tell you? I'm in the US

  • The last time my thyroid was hyper was 2 years ago and I had a normal ultrasound at that time and the symptoms stopped shortly after they began so my GP just did routine thyroid panel every so often and it was normal. Although I have from time to time felt the racing heart palpitations but that was only occasionally and then it started happening more frequently. At the moment, I just finished 2 weeks of steroids but I still have the swollen left eye and have also noticed swelling in both my left calf muscle and left shoulder muscle. For some reason, the swelling mostly effects my left side. I know all of these symptoms will add up to something but finding the one Dr. who can put them together seems to be a fairy tale.

  • It's weird. Is it afecting the skin on your shins?

  • no, nothing on the shins. My skin seems to be really sensitive but maybe that's just the weight loss. I don't look so good. LOL

  • With Graves TSH is undetectable (ie 00.01) as TSH Receptor antibodies bind TSH receptors and prevent the pituitary signalling the thyroid to stop pumping out hormones. This is why Graves patients are hyPER as the feedback loop is broken. If you don't have TRAB then you don't have Graves. Unless they are waxing and waning and have not been picked up.

    Very strange.

    You defo need to see an endo as inflammation in the Thyroid can cause intermittent hyperthyroid - but why the eye??

    It's a mystery. They should test TRAB (TSI and TBI).

    How bad are your palpitations? What other symptoms are you getting? Tremors? Too hot? Need to poop a lot? Weight loss?

    I've met one other lady like you with your other disease and she was also a mystery but you do need a doc who will figure it out with you.


  • very interesting. First over two weeks ago I first felt extreme fatigue, nausea to the point I could not eat and I lost about 10 lbs that week. Since then, I've lost another 5. I was very weak and having bad headache and sinus pressure. Also felt dizzy or off balance at times. I would get hot flashes like my forehead and face were on fire and I had some burning sensation in my arm, feet and hands. That's when I went to my GP and the first thyroid panel was done which showed the THS was low but all other thyroid test were normal except for 1 test which is still pending for some reason. I checked on it again today and they are trying to call the lab to see where it is. Not sure what test it is. Maybe the one you're talking about. During the next week, I began to get a sore throat, it felt tight and I got the racing heart and palpitations that lasted for a few seconds. that seemed to happen a few times a day. I started getting muscle aches and some swelling in my lymph nodes. Always on the left side. That's not uncommon for me though because I get that from Sjogren's. I started being able to eat again without feeling sick but I'm struggling to hold my weight. I have got some strength back and I think the heart racing and palpitations has decreased. My eye began swelling a week ago and that's when I went to the ER and they put me on a steroid to help control the swelling. Steroids don't have any effect on the thyroid, right?

  • Cortiosl is a co factor for thyroid - so we need sufficient cortisol for thyroid hormones to reach the cells so it's possible if you had a large amount of thyroid hormone in your blood it could have 'dumped' into your cells with the introduction of steroids but that wouldn't have continued for two weeks I don't think.

    There definitely sounds like there is something going on in your thyroid, and you possibly might have waxing and waning hashimotos antibodies or some kind of transitory hypERthyroidism.

    I have met one other lady with Sjogren's who also like you lost a lot of weight, but they couldn't find anything going on with the thyroid, but they sort of knew there was something. The tightness in the throat, the palps, and most definitely the EYE all point to some kind of thyroid / autoimmune thing but for Graves you'd have an undetectable TSH and TRAB (TSI) antibodies ....

    Just don't let them assume it's Graves, get them to test the antibodies. There is a thyroid eye disease charity in the UK also, I'm not sure if it'd be worth contacting them and asking them if they have any more information. For me I had the Graves first, and the eye involvement was the last step in the process (and was what got them to take me seriously) but some people can have the eye problems on their own.

    Have they tested your inflammatory markers (ESR and CRP)? Also an abnormally high ferritin can point to inflammation. My brilliant endo (the man who saved my life) said by the stage I was at, 70% of my symptoms were being driving by inflammation in my thyroid ...

    Sorry I can't be more helpful, it really is very mysterious.

    Magnesium can help with palps, and perhaps your GP would be open to prescribing a beta blocker for use as and when you get the racing heart?


  • I haven't had any other test besides the thyroid panel so far. I'm hoping to get in with a endo this week and I'm also going to call my Rheumy and have her run more test to try and get this figured out. I'll update when I learn something. Thanks so much for your help. It's very helpful.

  • Hi

    You are welcome, not sure I was actually much use. By the time my illness was found, it was a raging inferno, but I don't really know how it presents in the early stages. You do need a good endo who will work with you and help you figure it out and most importantly LISTEN.

    I also have a friend who was initially diagnosed with Graves (she went through a serious bout of hyperthyroidism, and I think she had low level TRAB) but was later diagnosed with hashimotos, and has high hashi antibodies, but weirdly, given she's now HYPO and on meds, she cannot keep weight on either, she's like a streak of wind she's so skinny ...

    I hope you get some answers. Might be worth investigating LDN as well and see what you think.


  • Is your pottasium high

  • Hi, I'm a former smoker but quit nearly 10 years ago and not around any smokers. Potassium is within normal limits on my blood panel. I don't think I'm Peri menopausal because I'm 42 although I don't really know what that means.

  • Are you peri menopausal

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