I have just been diagnosed with a reoccurrence of Graves Disease after initially being diagnosed in 2017.
My T4 isn’t hugely out of range 20.40 TSH not detectable. I’ve been put on 5mg of Carbimazole while I wait for an app at endo.
I’m wondering is it safe for me to exercise? Say swimming or dance class?
My heart rate isn’t massively high but at times is slightly raised at around 100 beats per minute. I have been having some heart palpitations, which prompted the discovery of the Graves’ disease having returned.
Id really appreciate any advice, I only had a quick chat with my doctor and didn’t get the chance to ask any questions.
Thank you
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JenLois
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The FT4 may not be over range, by many ranges it isn’t.
Your FT3 may not have been tested so you’re taking a medication to lower what hormones the thyroid can make based only on TSH. There’s lots of reason for low TSH.
You do sound as of you have the symtoms but 5mg is a very low dose, if Graves has relapsed and you reach typical levels the carbimazole will need to be increased.
Standard to have test 6 weekly when starting carbimazole to check FT4 & FT3 and adjust dose. This should *not* be done based on TSH.
Do you have a fit bit type tracker? To keep record of heart rate? If you feel up to some exercise stay on the gentle not strenuous side.
Your last posts were over 5 years ago. Im not sure you were every given the advice to have thyroid antibodies tested.
Did you ever find out if you had high Graves' antibodies: TSI and/or TRAB? Reading through your past posts, what you have sounds more like Hashi's than Graves', but you need the antibodies tested to prove it and to know that you're on the right medication. Carbimazole is not the right treatment if you have Hashi's, and doctors don't tend to know the difference.
I had the antibody test 5 years ago and was diagnosed as Graves by the endocrinologist.
unfortunately it doesn’t look like my T3 was recorded this time. My TSH showed up as low back in Sept 22, but as my T4 was ok then nothing was done. I had it retested in Jan 23 and the TSH had risen slightly but still not in range. Again T4 was ok.
Now TSH undetectable and T4 20.
5 years ago my T4 was 35 and I had more symptoms than I do now, so was assuming it’s been picked up just as the levels were starting to go wrong again?
Thank You. I’ve looked back on my previous documents from the endocrinologist and have a letter that says Antibody TPO positive. Does that confirm Graves Disease?
TPOab (Thyroid Peroxidase antibodies) does signify autoimmune but will appear with Graves & thyroiditis. (Autoimmune thyroiditis (Hashimoto’s) can cause transient hyper ultimately the autoimmune damage causes low function) doctors just refer to hyper / hypo thyroid.
TGab (Thyroglobulin antibodies) also appear in both.
To confirm Graves
TSI - Thyroid-Stimulating Immunoglobulin & or TRab - TSH receptor antibodies (TRAb) is accepted as evidence of Graves.
do you remember how long you were taking carbimazole last time? Graves tends to need as least 18 months, longer in many cases.
When I had Graves’ disease I was beyond exhausted all the time. I went from being someone who did long distance coastal walks to being someone who did nothing and still went to bed utterly exhausted at 6.00pm
I did Pilates with a very good teacher who is a physiotherapist and she adapted everything so that I could keep going. I was also going to a medical referral class at my local gym, I loved the people in my group and kept that up by dialling down on everything I was doing. I did not want Graves to rob me of everything I enjoyed doing.
Unfortunately the long distance walking went out of the window. For a long time I just had no energy to do that and then one day I realised I wanted go do a coastal walk and off I went.
From my own experience I’d say just do what makes you feel good. I wouldn’t go mad and if what you are doing doesn’t feel good then don’t do it.
Thank you. I completely understand not wanting to feel robbed of things. I think that’s how I am probably feeling now.
I think I’m tolerating Yoga ok, but if I’m honest with myself I felt pretty shaky after a 20 min walk the other day. I guess it’s anything slightly cardio related.
I also relate to the exhaustion, but I’ve also had a chronic fatigue diagnosis before so put it down to that!
I’m glad you were able to resume your coastal walks 😊
I just want to reiterate the importance of correct antibody testing. I was initially diagnosed by my Endo as Graves, largely on symptoms (including weight loss, fast pulse, palpitations plus TED) but when encouraged by forum members to double check antibody tests, I actually discovered I have an underactive thyroid / Hashimotos.
I’ve always been very active, but when I’ve been unwell with thyroid symptoms, I’ve moderated my exercise routine accordingly.
Hello there, I have graves disease , diagnosed 2018.I had the usual treatment with carbimazole but decided to have a thyroidectomy last June.All the way through I just struggled to get through the day with increasing muscle weakness(legs like jelly) no energy and increased heartrate.I haven't done any excercise really since.I just try to keep active on a daily basis.I was worried about the effect on my heart.I think of it as being kind to my body and not putting it under any unnecesary stress.I am going through a dose change at the moment but once that is settled I would think gentle excercise will be the best for me.As you say swimming, yoga, stretching etc.Anything aerobic would be out for me.The main thing I would say would be to listen to your own body.You sound like you have always done these things so you may just have to make some adaptations.I never really excercised in that sense but was just active, walking everywhere etc.We are all different.Wishing you the best of luck.
I was diagnosed in my mid 20's with Graves disease and was on carbimazole for about 10 years before I had Radio Active Iodine treatment at 35. I was an active runner when diagnosed with Graves and never thought of stopping or advised to. I'm not saying it was the right thing to do, but I ran 4 marathons and thousands of miles in training (just for fun!) whilst on carbimazole.
I'm now nearly 66 and still active but now have an under active thyroid. Wish I had read the book The Autoimmune Solution by Amy Myers before my RAI as it might have been that a change of diet could have helped. I'll never know now.
I wish you well. If you feel up to doing some exercise then it's normally good for you, in my experience, both physically and mentally.
Thank you all for your replies. It’s really helpful to hear other people’s stories.
I have realised that I am feeling very fatigued and probably not up for Cardio exercise at the moment. I was quite shaky walking for 20 mins and my legs felt weak. I will stick to yoga for now and hopefully build up to cardio once I’m feeling stronger.
I was also wondering about others opinions of the impact of stress? My first flare up happened after being made redundant, the consultant didn’t think it was linked, but this time I’m at the end of a year long course and am in the process of an exam. It seems a bit coincidental?
Graves is an auto immune disease and there is no cure.
The thyroid is the victim in all this and not the cause - as the cause is one of your immune system having been triggered to turn and attack your body, rather than defend it.
Quite why this has happened to you, is the 64 million $ question and really only you know yourself well enough to try and understand your own ' triggers ' :
There could be genetic predisposition, bit even so, your body isn't at peace and your immune system needs calming down.
Graves is poorly understood and badly treated in mainstream medical precisely because no two people have the same symptoms, everyone's Graves is unique to them, BUT a very common factor is stress and anxiety.
You might like to read around Graves on Elaine Moore's Graves and AI Education Foundation - as Elaine has a section on life style balance and looking at more holistic and alternative treatment options and ways of calming down one's own immune system response.
I have Graves and went through RAI thyroid ablation back in 2005 - a treatment I deeply regret and became very unwell some 8 tears later and found little understanding or help in mainstream medical.
Elaine herself has Graves and only started researching for herself when left more unwell after RAI than before.
The most recent research is suggesting that the longer the patient stays on the AT medication the better the long term outcome for the patient.
I guess I’m probably stuck in a bit of a ‘why me’ place at the moment as it’s been a bit of a shock that it’s returned.
I’ve had quite a bit of trauma and stressful situations throughout my life, I have also been sub par health wise since contracting glandular fever age 16. It’s been a bit of a battle trying to stay well since then really.
I currently want to go and live on a desert island where I can do nothing and have no responsibilities!! But I know that isn’t possible. I realise I need to try and manage stress.
I learnt a lot from reading around on Elaine Moore's website and purchased her first book - Graves Disease _ A Practical Guide - ( quite technical - though I am dyslexic ) and only started all my research 10 years post RAI treatment for Graves when my health seriously declined.
I believe I was then dealing with a mixture of the long term consequences of taking RAI and not being on the appropriate treatment option for someone living without a thyroid post RAI thyroid ablation for Graves Disease.
Looking back I had always been undiagnosed hypo, from a child, and remember at 11 my hair falling out because of the 11 plus exams which I knew I would fail as I knew I couldn't read but this was never diagnosed, and I just compensated as best I could by developing my memory so to recall anything verbally taught at school.
The symptom that took me back to a doctor was insomnia and was diagnosed with Graves, prescribed Carbimazole which suited me very well and resolved the insomnia and thought that's that.
I was 55/56 at the time and my Graves triggered by being physically threatened and verbally abused by a man I employed as my assistant manager and was going through the disciplinary actions with a company who were as useful as a chocolate teapot.
There's likely a genetic predisposition with someone, maybe a generation away from you, with a thyroid health issue - but - yes, stress and anxiety seem common factors and of course we all go through a phase of ' why me ' and sometimes it helps some people to find cause/effect and get a better understanding of themselves.
At this point i time, as the research suggests, the best option is to stay on the AT drugs if your symptoms are alleviated by this method as more definitive action, and loosing your thyroid does not actually solve an auto immune disease and for many, including myself, living with Graves, without a thyroid, is no walk in the park, and not easily treated in primary care as mainstream medical hospital dogma would have us believe.
I am unfortunately struggling to get an appointment to speak to my GP about anything. I received a message saying I needed another blood test in 2 weeks and depending on the results she may need to seek advice from endocrinology. There is no mention of being referred to them. Is this normal? Can my GP just manage it?
The exercise question kind of answered itself as I’ve been feeling really unwell and not up to any exercise anyway. I’m extremely fatigued/feel very weak and ache everywhere. I’m not sure if this is normal when first taking carbimazole? I’m only 3 weeks in.
Hey there again - unless you actually reply to someone in particular and their name comes up in your reply - no one is alerted that you have posted anything and you are left likely feeling more isolated than previously.
So - I found the above simply by chance - I'm sorry you seem unable to contact and get help from your primary care doctor - and as I understand things, especially now, you can be managed in primary with your doctor taking instruction from hospital endo - and presume you are getting 6-8 week follow up appointments ay your surgery and dose adjustments to the AT medication as the T3 and T4 dictate ?
You have been here before and know it's not forever but sound really fed up with it all ?
I hope you have stopped thinking about any form of exercising as Graves can totally fatigue you while just siting on the sofa, though your brain is wired telling you to run a marathon which feels very much like just going up the stairs.
Are things any different this time around ?
When metabolism isn't running quite right for the individual either too fast as in hyperthyroidism or too slow as in hypothyroidism the body struggles to extract key nutrients through food.
So matter how well and clean you eat you may find your core strength vitamins and minerals have nosedived through the ranges and this can compound your health issues further.
So please get your ferritin, folate, B12 and vitamin D run next time you have a blood test and also ensure your T3 and T4 are run as hypothyroid symptoms - too low a level of T3 for you - can be just, if not more debilitating.
Do you have online access to your previous readings so we can compare the next set of results to previous ones and symptoms ?
Thank you so much for taking the time to reply to me.
I’m feeling a little better today, I think the fatigue was getting to me. I haven’t exercised at all apart from some gentle yoga and I’ve made peace with that for now.
I do feel as though I’m struggling more this time around, although last time I wasn’t working. I’m currently working full time in a mental health job and am just coming to the end of a year long course so have much more going on. And am older!!
Thank you for the information about vitamins. That makes sense as in Sept blood tests show I had low ferritin, which was the same time that I was subclinical hyperthyroid. My B12 and vitamin D were high.
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