Hoping to see if anyone can share their story on their experiences with exercise, whilst treating Graves.
I play basketball on a regular basis, but recently my Graves relapsed and I’ve been back on medication, 10mg a day for about 5 weeks now. Around the 3 weeks mark, I felt a lot better, so I thought I’d give basketball a go… it felt okay, but I still didn’t feel like myself. A couple of days ago, I played around 20-30 minutes of basketball without any issues but soon enough I had reached my maximum heart rate of 186bpm, which was really scary. All signs show that I have tried to do too much, too quick.
If anyone in the forum is happy to share what their journey back to being active is/was like (exercise, sport, whatever it may be) or if you have any tips on recovery, I would really appreciate it!
Thank you 🦋
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Liiila
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It would help forum members understand your situation better if you would complete your profile page - or just reply on here with a bit more information :-
Such as where you live, when diagnosed Graves, what treatments have been prescribed and length of remission between further episodes.
If you also have your initial blood test results at diagnosis along with the antibodies found positive and over range that is useful as well.
Graves is a poorly understood and badly treated auto immune disease and something has triggered your immune system to attack your body, rather than defend it:
Graves is said to be a stress and anxiety driven AI disease and you read fully around all things Graves on the Elaine Moore Graves Disease Foundation - elaine-moore.com
I wouldn't suggest you enter into anything too strenuous at this point in time but can't say much more without further information.
The most recent research is suggesting the longer the patient stays on the AT medication the better the outcome for the patient .
Is the carbimazole at the right level? Being too low a dose will mean you are still hyper & having too high a dose can lower thyroid levels too much.
The strain of being at either end of scale can cause heart to race & palpitations.
Doctors tend to go by TSH and not FT4 & FT3 & as you have only recently resumed carbimazole you likely won’t know what affect the medication has has as yet.
Usually a repeat test is taken 6 weeks later - has that been scheduled?
10mg isn’t a high starting dose so it might be it’s has been caught early & you didn’t need a higher dose, or your thyroid levels may still be too high.
If heart rate is a particular issue some can be prescribed propranolol. but this only relieves symptoms not the source of issue - abnormal thyroid levels.
Propranolol also needs to be stopped slowly. & I still take a low dose years later as I found lowering it caused migraines. Many do stop without any issue.
It will take a few months for symptoms to settle, your thyroid level rising can have a lingering affect & can also deplete nutrients.
Recommend you get a copy of blood test results & track what’s being tested, what results doctors are relying on to judge your treatment. Then you can arrange tests for anything that hasn’t been tested. (Privately is necessary)
For full testing you need:
TSH, FT4 & FT3.
TPO & TG antibodies - TRab & / or TSI antibodies must be tested to confirm Graves.
Folate, ferritin, vitamin D & B12.
You need results & lab range. (ranges vary between labs so always needed). You can request a printed copy. You may have or option to set up online access to records. See if practice offer it. You are Legally entitled to result.
Gluten can often be an issue for thyroid autoimmune conditions. test for gluten allergy if not already done.If negative still worth trialling strictly gluten free as gluten intolerance won’t be revealed in test.
Thank you pennyannie and PurpleNails for sharing your knowledge and insight on this matter. I have updated my profile with some background on my GD journey so far.
I was diagnosed in 2011: I was in remission from 2014-2018, and again in May 2022-Feb 2023. I had changed from one Endo to another when I moved interstate (in Australia). Unfortunately, when I moved interstate, it was near impossible to get a referral for the first few years and I felt I was on carbimazole for longer than needed (5mg a day for about 3.5 years). Nonetheless, regular 6 months blood tests were done with a GP until I was able to find a new specialist.
I appreciate you sharing these resources with me, I recently downloaded Elaine Moore's book so delving into that as we speak! I have my appointment this Friday, so hopefully the blood test will shed some light on whether the dosage needs to be adjusted.
I have never done a gluten allergy/intolerance test before, but I have read that a gluten-free diet can help! Are these tests generally accessible through the GP?
In the past, I've never questioned anything the Drs/Specialists have said... but having relapsed again... I feel like there's gotta be more I can do to help my thyroid, and hopefully be able to feel like myself again on the court!
So grateful to have found this forum! It only took me 12 years 😂
No worries - I only found Elaine Moore and this forum around 10 years too late and post RAI thyroid ablation for Graves and very unwell and finding no answers from mainstream medical.
I thought maybe that Graves I had ablatio for in 2005 had come back, and purchased Elaine's first book, only to learn it never went away - as Graves is an auto immune disease for which there is no cure - yet :
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 happened and what has upset your immune system is the 64 million $ question and you know you best, so maybe take a look at Elaine's sections on alternative and more holistic treatment options and her suggestions on life style and work/life balance to a least try and mitigate any more repeat performance.
There can be a genetic predisposition to Graves, maybe a generation away from you with someone with a thyroid health issue. Once triggered, it's likely to reoccur but you can start to look to yourself and what's been going on that may have triggered your Graves again.
Graves can occur after a sudden shock to the system, like a car accident or unexpected death of a loved one - or can just seem to occur, totally out of the blue.
Looking back, as all my knowledge is back to front and post RAI thyroid ablation, and mostly picked up through Elaine Moore my Graves was triggered by being physically threatened and verbally abused by a man I employed as my assistant manager.
Managing Graves through Anti Thyroid medication takes much time and great skill - and sadly in the UK it seems encouraged by some hospital trusts to take the thyroid out as it is believed that primary hypothyroidism is more easily treated in primary care.
Well, it is not, as seem by the numbers of forum members we now have on this amazing forum, golly, it's now over 130 thousand - I'm sure there were ' just ' 15 K when I fell into here, some 7 years ago researching low ferritin !!
Please put country in profile, as many mignt not realise.
Lots of us post links on private companies for blood tests in UK & that’s not going to be relevant.
From your profile
TSH < 0.02
FT4 49
FT3 21
Add the range when you obtain them. I can see your TSH is extremely low the < indicates test minimum so it’s fully suppressed /undetectable.
FT4 & FT3 are very high by most ranges we see. I suspect 10mg carbimazole will have brought levels down but might not have lowered them into range as yet.
That doesn’t account for levels naturally lowering or increasing separately from carbimazole. Predicting levels should *never* be guessed, it’s important to test FT4 & FT3 to be certain.
Your doctor should be able to arrange a tissue transglutaminase IgA (tTg-IgA) which tests for gluten. They may not automatically test. Often it’s only arranged if you have reported gut issues, but gut problems are not always obvious.
In UK can you buy kits either online or from chemist which test with finger prick sample so there may be similar options near you.
I used to do a lot of long walks, I went to a gym several times a week and I did Pilates. That was my base line for exercise before I developed Graves Disease. I was treated with block and replace - it sounds like you might be titrating.
Anyway, exercise. I felt utterly wiped out in the beginning. I was utterly exhausted and wanted to sleep all the time. I had to stop the walking, I just had no energy to do much at all. I was working part time invigilating college exams and I felt so unreliable I cancelled the work I was booked for.
I kept going to the gym because it was a nice friendly gym, I used to attend the medical referral classes and it was a very caring group so basically I dialled down the effort required for all the machines I used and just ticked over. My Pilates teacher is a physiotherapist so she was able to adjust my floor exercises which was good. I didn’t want Graves to rob me of everything I loved doing. I took a term off work and went back a few months later.
For a long time I had no real energy - I think I was in my early sixties when I was diagnosed - think that is quite elderly for first time Graves - then one day I just felt like going for a *proper* walk and that was me back in a much better place. My treatment lasted exactly a year.
Couldn’t agree more with pennieannie in what she says about managing Graves being a skill.
I’d say you have to be patient and pace yourself, don’t try to do too much too soon, you will probably be very tired for quite a while but eventually you’ll get there with plenty of rest, good food and as the others say you want your vitamin and mineral levels well up in their ranges.
As well as reading as much as you can about your condition, keep using this site, you could also join TUK. You should keep records of all your blood test results etc.
Also make notes on how you feel - I used to relate mine to the medication I was taking - plus any questions that come to mind etc. and you can ask your consultant when you get to your appointment. My feeling is that it is good to look as if you are taking an active interest in your treatment rather than just letting the doctors *do it to you*. Your body, your health.
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