update to graves disease

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 plea

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  • Hi there

    I started to have palpitations 6-7 yeRs before sjorgrens was diagnosed and after a variety of tests i was put on bisoprolol which has helped though still have irregular beats at times. Im hypothyroid so thats not cause, never did establish an actual cause. Sorry im not of much help, it is a disturbing sensation , and maybe stress may make it worse. I hope you feel better soon xx

  • Hi! How are you feeling these days? I am feeling better overall and trying not to stress and worry. Do you take that daily? The endo gave me a beta blocker but said to only take when I'm having them. so far it's only once or twice a day and it doesn't last long so I don't take it. I'm just trying to figure out if it is indeed a palpitation or something else. do you think you think it's your auto immune that causes yours?

  • I have this problem exactly as you describe but it is intermittent. I'm also hypothyroid and it did return when I was taking T3 with my usual Levothyroxine. The endo took me off it and raised my Levo dose and it's resolved again. I also had it really badly when I was on Amitriptyline and again when I was tapering off steroids. I wore a halter monitor for a week and was told I have ectopic beats. I conclude certain chemicals and stress or flares of Sjogrens trigger mine. Hope this helps. Twitchy x

  • Hi Twitchy! That does help to know other people have the same symptoms and I'm not crazy. :), I have read that people can get palps with both hyper and hypo thyroid. I'm sure it's even possible for my thyroid to dump excessive amounts of hormone and cause this but then it's working fine at the time of my blood test. One of my biggest problems is my need to know why, what, how and when. LOL I feel much better when I know why something is happening and know what the extent of the problem is. I have another appointment with my rheumy tomorrow. Hopefully, she will have answers for me. hope you are feeling better.

  • I take the beta blocker every day i have tried to reduce level once or twice but palps got worse. I never found the cause but maybe this is another question for the rheumy if it is related. I really hope you get some answers from yours that would definitely reduce the stress, good luck xx

  • Oh I so relate to the need to know why?! And so many doctors seem unable to grasp this and assume we are either overthinking and neurotic or else that we want them to cure it or appease the mystery symptoms with medications? It drives me nuts!

    If you have very bizarre and unpleasant symptoms that are a mystery to your doctors then the only rational thing to do is to search for answers. To just accept that we have these symptoms as part of an ageing process or hormones or whatever and just trust doctors to put us on drugs that can only ever mask these symptoms - now that to me is irrational?!

    I'm trying not to worry or be unduly disturbed by tinnitus just now. I've had it getting steadily worse for a few months and presently it's epic. So I know exactly how you are feeling. Have you had ECGs and other tests to rule out atrial fibrillation yet? X

  • I agree 100% with you! Is there treatment for tinnitus? . I haven't had any heart monitoring except when I went to ER. heart was high around 105 beats but I don't think I had any palps while I was there. I told both Rheumy and Endo about it and they both said thyroid causes that. I'll bring it up again and see what happens.

  • Yes I believe thyroid is one of the more likely causes. It definitely was for me last time the palps were bad.

    But some otherwise healthy people just do get palpitations as benign ectopic beats. I was told that everyone gets these extra beats but most people don't notice them. Once we are aware of them then we can't fail to notice them - especially if stressed out by other stuff or taking new medications - which might cause them to intensify.

    Nothing to worry about they told me - but this was after many ECGs had ruled out AF or other heart related issues.

    So I would go back to your doctor and double check. You don't want any more sinister arrhythmia overlooked and it is easy enough for them to give you a portable monitor.

    It's a horrid symptom but hopefully, once you understand it properly you'll find it less alarming. ER can only check then and there and problems such as Atrial Fibrillation need a 24 hour or even a week long monitor to rule out anything more serious. X

  • saw my rheumy yesterday and she thinks the palps and neuropathy are residual effects of the hyperthyroid rather than the Sjogren's. I hope she's right! She said if it gets worse then I do need to get a heart monitor but she thinks it should stop soon. She did confirm I also have RA and although my graves antibody test was negative, she said I present like a Graves patient to her. she said I may want to consider taking methotrexate. Right now I'm only taking plaquinil. I'm fearful of taking the new drug because of the other complications from it but I'm also fearful the damage the autoimmune is doing. Would you suggest I start it soon?

  • Methotrexate chased off my RA good and proper. I took it for two years - pills and then injections along with Plaquenil and my RA has never come back.

    But then my new rheumy said that it was Sjogren's mimicking RA he believes. I'm not so sure - he didn't see my hands when I was diagnosed.

    Are you in a lot of pain and have you a lot of swollen, hot joints? The thing is that if it's RA it could cause erosive damage quite rapidly so if the rheumy says you need MTX then you probably do. If it's Sjogrens mimicking RA then it usually isn't erosive and there's less swelling. That's what it says in my Wallace The Sjogrens Book anyway. With Graves, RA and SS you are having a really awful time - poor you lots of sympathy xx

  • thank you! as far as I know the only signs of RA is the knuckle on my right pinky finger has a swollen tendon and I noticed my other knuckles seem larger too. I have soreness in my hips and knees but no swelling other than my finger. My Rheumy said it usually starts in the hands. I know I read that SS can cause that too so it's so confusing but I think you are right. whatever it is, I'm getting damage so I should up my medicine to slow it.

  • Yes - I feel that methotrexate was very effective because I could barely write or do up my shoelaces or hold books or drive by the time I was diagnosed. It took 6 months to really chase off the synovial swelling and pain but it did . Now that my problems are all in my nervous system and are very rare and not easy to treat at all, I almost miss the RA and methotrexate days in comparison! I think you are doing the right thing. I have pain in my knuckles and one swollen finger joint - but it doesn't feel like RA anymoreso I think it's the sjogrens.

    Best of luck with the MTX- you will be well monitored on it. X

  • you no longer take Methotrexate? why did they take you off?

  • I am off all disease modifying drugs now. I had anaphylaxis from two DMARDs including Plaquenil - and Methotrexate made me really sick after a while. I tried Azathioprine last year and it gave me pancreatis. I'm highly allergic to the chemicals in many drugs unfortunately.

  • that's just awful. Is there anything you can take? What about new class of DMARD's? Have you tried those? I'd be afraid to.

  • I agree with twitchy i think it would be wise to see about a heart monitor. It would help in ruling out other things and hopefully leave you more at ease.

  • saw my rheumy yesterday and she thinks the palps and neuropathy are residual effects of the hyperthyroid rather than the Sjogren's. I hope she's right! She said if it gets worse then I do need to get a heart monitor but she thinks it should stop soon. She did confirm I also have RA and although my graves antibody test was negative, she said I present like a Graves patient to her. she said I may want to consider taking methotrexate. Right now I'm only taking plaquinil. I'm fearful of taking the new drug because of the other complications from it but I'm also fearful the damage the autoimmune is doing. Would you suggest I start it soon?

  • I have primary hyperthyroidism and they are scanning me soon to find the tumor/blockage...But I've been having chest pains/palpitations also the last few months.In Jan.2016 I became ill,and this is a new problem to my list of symptoms. I read that hyper and hypo can both mess with your heart.Doctor ordered me to have heart test to make sure.But some heart disease are linked to our thyroids causing damage.So I would have your heart checked! I've been frustrated also.If I over do it also,i pay.... trying to catch breathes and chest tightness😞

  • thank you for your advice. I agree I should have a heart scan. How do you know you have blockage? Is that causing the chest pain?

  • I'm not sure if there's something wrong with heart yet! But the Edo claims the chest pain isn't from being Hyper.I have read otherwise.It can cause Tachycardia/left ventricular hypertrophy.Hyperthyroidism can cause irregular heartbeat of the atrial fibrillation....Fast heart beats and pushing blood flow to fast.

  • True. I have hashimoto and graves disease. How I found out I had something wrong with me was a running heart..took the fifth time go Er with a heart running at 178 for them to find out I had Hashimoto and referred to a Specialist for Thyroid. The Specialist said I didn't need beta blocker anymore, boy was she wrong I was in the ER with my heart spiking up 5 times till I begged the ER doctor to let me take my heart pill(beta blocker) it went back down and didn't spike up anymore. I only take a quarter of the 5 mg since my thyroid pill was lowered to 5 mg. Really I don't know what to do with me taking the heart pill or not, since my Thyroid Doctor says to take it only if it starts to race..I sure wouldn't want that experience its horrifying. So I've been taking a quarter, then I skip a day of taking it then I'll take one the following day.

  • does your heart rate stay high? Mine is normal except for brief spikes. My Endo said If I take the beta blocker when my pulse is normal, it could go too low. so far I haven't had another spike.

  • I haven't took the beta blocker in three days. My medication was lowered to 2.5 and I asked my endo yesterday about my heart, she said I shouldn't be having any issues with my heart spiking up. So far its been normal. I have hashimoto and graves disease. How long have you had graves. I just found out in August 18 of this year.

  • Graves hasn't actually been confirmed. I have sjogrens and I had a hyper thyroid about a month ago and both of my eyes swelled and protruded. First time I tested my tsh was low but my thyroid went back to normal which has happened before and now all test are normal but I still have the eye problem so not sure how I couldn't have graves. I didn't know you could graves and hasimoto together.

  • Glad to hear that your in remission. I've never knew about thyroid conditions until what happened to me. Well my heart rate went up to 102 and didn't want to go down, I was asleep and woke up with my heart pounding, I checked it and it was 95, I was monitoring it but somehow I panic and misread my high blood pressure as my pulse I saw 157 and took half a pill of beta blocker...just when I swallowed pill I noticed it wasn't the pulse I was reading...I was upset with myself cause I was trying to see if my pulse would go down on its own without beta blocker...I'm just so sad now for panicking. And I read somewhere here about some lady adding honey into her eyes for protudeding, and she said if worked good on one of her eyes and still working to get the other back to normal. And no I don't have my eyes protruded, and two doctors don't think I have graves because I don't have my eyes protruded nor do my hands shake. I have both hashimoto and graves cause I was found hyper cause of TSH level but first diagnosed only Hashimoto, but Endo did another blood work and found both.

  • Do you have to take blood pressure medicine? My heart rate was around 110 and I didn't have any beta blockers so I just took deep breaths to try and calm myself down. I wasn't entirely sure it wasn't me having a panic attack at the time. Now I know it wasn't because it kept happening at random times when I was already calm. my blood pressure never raised that high though. 130/90 was the highest pressure. now I don't feel like my heart races. It's more like an irregular heart beat at times. Do you also have those?

  • No I don't take medication for high blood pressure. Just the heart medicine which the doctor gave me as samples, but it says its good for high blood pressure. She told me I didn't need the hear medicine, but why did my heart start racing like 3 weeks ago at the emergency. Well she still tells me I don't need it. I only take quarters and don't need them for two days, but then start feeling sick and my heart starts to beat fast, and I'm not thinking of anything to get my heart going, and its not an anxiety cause I know how that is, so as soon as I see it get to 110 I pop a quarter heart pill and my heart starts to calm and don't feel sick...I'm starting to wonder is it a withdrawal thing? I don't know...and this endo ain't much help.

  • do you see a cardiologist or just the endo? If the endo is saying it's not your thyroid causing the heart to race maybe you should see a cardiologist and make sure it's not something else. If there isn't any heart condition then perhaps a new Endo is needed.

  • No I don't see a Cardiologist. Need another endo after I get a new medical doctor who I will see next month cause this last medical doctor didn't want to prescribe me a heart monitor after the emergency doctor suspect something wrong with heart on the four valves. Let's see if I make it to next month on the 15 cause my endo ain't worried, she said worry more about thyroid getting better, then the heart...I'm like its really both but heart is main concern.

  • I can see her point if she thinks the heart problems are because of the thyroid but I'm with you that my heart is my first concern! Good luck and keep us updated. :)

  • Thanks ! To you as will.

  • Hi there

    Its hard to get answers sometimes!! My pulse rate has always been relatively normal , except form some irregular beats. The betablockers did not affect my pulse which stays at a fairly constant 60. If you have any worrys or fears go back to gp andget further tests . Its better to be safe 😀

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