Graves - regaining fitness and long term carbimazole

[SoozeJ]

Ive been diagnosed with Graves for approx 3 years now. I'm still on carbimazole (10 g daily at present - stable on this for about 15 months TSH is suppressed, T3 in range- that's all the info I have from my consultant) and hope that I can stay on that as generally I'm feeling okay.

I came off carbimazole for a short period of time about 18 months ago and immediately relapsed. One question I have is.... if the front of my neck is still tender to touch (as it has been since before diagnosis) does this mean I am still likely to relapse if I come off carbimazole. Is this tenderness indicative that something is still going on with my thyroid?

my other question is about getting back to fitness, I have been doing the couch to 5k and am nearing the point where I can run (albeit quite slowly) 5k, however the fatigue afterwards often has me floored... how do Thyroid levels interact/ impact excercise?

Any help or advice would be gratefully received.

Thanks

SJ

[Greekchick]

Hi SJ,

I have Graves and had a TT 4 months ago for a toxic multinodular goiter. I was on Tapazole for 2 years with no side effects and was in remission. My goiter was the cause of the surgery because it was crushing my vocal cords and trachea. I had borderline hyperthyroidism without Graves for 22 years.

For your case - if you have no side effects on carbimazole, is your MD willing to let you stay on it? My endo has a patient who has been on Tapazole for 11 years with no ill effects. It is likely you will relapse without the carbimazole.

The swelling is a concern - and if it is tender to the touch, I would say that is also a sign that something is going on. I would suggest the following:

1.Nuclear scan of thyroid

2. Ultrasound of neck

3. Do you have nodules? FNA biopsy.

If you post your blood results it would be helpful with your TraB antibodies.

About your exercise - any physical exertion with active Graves will cause you to become totally drained and exhausted. You get the initial boost of energy from the Graves, but then you deplete all your stores and become utterly useless. That happened to me - I would do my exercise - nothing like you - but also be very active - and I would collapse at the end of the day. I couldn’t even speak to my husband I would be so drained. I don’t have a good answer

[SoozeJ in reply to Greekchick]

Hi Green chick, thanks for your reply. I had an ultrasound scan of my neck about 2 years ago after I pointed out to the endo that she'd not even palpated to see if anything was going on there and I was concerned about the tenderness. The result from that was that it looked typical for someone with graves, with hotspots of activity, but nothing to warrant a FNA. I will raise it again when I have my next check up.

I haven't had any proper results since my bloods being ordered via the endo, they go straight to her and not my GP so can't access them easily, and neither can the GP. I could ring the endo secretary and ask for all blood results in full.

I have both TraB and TPO antibodies (I think! I can't quite remember). Defintiley TraB and another anyway! But I don't get any indication about those levels from my regular blood tests.

I'm definitely interested in other people's stories about exercising and graves. Your feeling of total exhaustion sounds familiar. I guess I just need to pace myself and make sure I get a good night's sleep too!

Thanks again

sJ

[Raali in reply to Greekchick]

Hi Greenchick I also had a partial lobectomy due to borderline hyperthyroidism. How are you doing after your total thyroidectomy? And how are your energy levels? I am not on any medication after my partial and feel super lethargic! Please I would really like to know what thyroid meds are you taking, and how you feel after surgery!

Thanks!

[Greekchick in reply to Raali]

Hi Raali,

I am doing reasonably well after my TT. I am still not completely adjusted to my meds yet - and have a ways to go before I feel myself.

My energy levels are OK - some days better than others. Some days I feel great and others I feel tearful and sad. What meds are you on and what dose? Can you post your latest bloodwork with your thyroid panel results and any antibody readings? That would go a long way to helping understand why you feel so lethargic. When did you have your partial lobectomy?

Wishing you all the best.

[Greekchick in reply to Raali]

I am on Synthroid (T4 62.5 mcg) and Cytomel (T3 7.5 mcg). I am still underdosed but am waiting to see MD before adjusting because I want an 8 week reading for bloodwork on a stable dose so I know where to go next. Forgot to answer you about that!

[Greekchick]

Sorry- hit return too fast - except to say you will have to pace yourself until your Graves is under control. Any stress triggers Graves - including physical stress. You may wish to consider staying on carbi and resting up i.e. not such strenuous activity- so that you can get back to normal.

Hope this helps and best of luck to you.

[Greekchick]

After 2 years I would think a neck ultrasound is in order particularly with swelling because you may have new nodules developing and you need to know that. The biopsy - they will decide once they see the results of the ultrasound. I would press for the ultrasound - and wait for the results before pressing for a biopsy.

It is my understanding that you are legally entitled to your bloodwork results in the UK - they cannot refuse you. Call your docs and get a printout.

Wishing you all the best and hope you feel better soon. Take it easy on the running for awhile and let your body heal a bit- you’ll get back to it soon.

[ling]

1) When you tried for remission, was your TSH still suppressed?

2) Before trying for remission, you should have your antibodies levels tested again. If they are still high, then no need to try for remission as likelihood of relapse is high.

3) Having TPO antibodies increases your risk of having Hashimoto's as well. Graves, Hashimoto's, these conditions are closely interrelated, so be watchful if symptoms start to become different.

4) You should get a copy of all your results to date. As the disease evolves, the results might come in useful as reference points

[Cica77]

Hi Soozej,

I can't comment to the neck etc but re exercise, try to focus on strength exercises rather than cardio. You still get increased heart rate etc but is much less intense. Yes, it won't be ideal for endurance but it won't wipe you out so much while still giving benefits.

Too many people (esp women) shy away from strength and weights exercises, worried about getting bulky (it won't happen because we don't have enough testosterone). I find it perfect with hypo - although don't get results anywhere near as easily as other people without thyroid probs. If you're doing it for weight loss though, use measurements to check progress rather than numbers on the scale.

[purple64]

Hi, I can't even imagine being able to run 5k 😂 No wonder you are exhausted, it's impressive though. I was only thinking the other day I have not had my neck checked since mu first visit in Sept 17. I would certainly ask for copies of your blood results to see what has been tested and the levels. Maybe your GP can refer you for another scan? If not they can email the hospital and ask. I've not had any tenderness so I can't comment but it would definitely need re checking. Keep us posted.

[Cat4health]

Hi SJ, well done you for achieving 5K!!I've had graves flare ups twice now and both times I worked out daily throughout it. I disagree with the person below who said exercise will cause it, excessive exercise perhaps, but moderate exercise has been shown to help the immune system. I also take immunomodulants (plant sterols) to help with the graves when I workout. I recommend reading Elainemoore.com about that and for more accurate information on graves disease.

I also agree with Cica77 about strength training, especially for graves disease, as it can help restore bone density which is threatened by having graves.

I also think you need your results ASAP. Endocrinologists will very happily over medicate in an attempt to get the tsh up or just to be safe when in fact having too low ft4 will cause your graves antibodies to increase and this could make your thyroid more tender (if its under antibody attack) and also perpetuate your flare up. My understanding is flare ups often last 2-4 years so it sounds like they took you off meds too early for you last time, or possibly had been over medicating you at that point also.

Best of luck and well done for your health efforts despite the difficulties 🙂