When will I start feeling better?: Hi, I have... - Thyroid UK

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When will I start feeling better?

lisbriamy profile image
15 Replies

Hi, I have Graves Disease and was just was diagnosed with hyperthyroidism for the 3rd time, three weeks ago. This time it is much worse. I went to the hospital 4 X's with A fib. Just had my test done after 3 weeks, TSH-.01 (normal 0.40-4.50), T4 free-2.2 (normal 0.8-1.8), T3 total 129 (76-1810 I still feel horrible, constant fear I will go in A fib again, very aware of heart, feel jittery, tired, and just all over bad. I have not been able to go to work either (tried twice but could only stay 1 hour). Any ideas on when I will start to feel better. I am taking 10 mg methimizole twice a day, 75 mg of metoprolol twice a day, 5 mg Eliquis (because of A fib) twice a day, and .25mg Xanax as needed (which seems to be 3 or 4 times a day).

Anyone else have trouble with A fib? Every time I have a flutter or palpitations I"m afraid A fib will start. Have to have another test in 4 weeks and they want to do RAI when levels are right.

Oh yeah, I am normally very active with walks, yoga, teach exercise classes. Can't do any of that!

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lisbriamy profile image
lisbriamy
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15 Replies
bantam12 profile image
bantam12

I had RAI for uncontrollable Graves 👍

lisbriamy profile image
lisbriamy in reply tobantam12

How are you now?

bantam12 profile image
bantam12 in reply tolisbriamy

Absolutely fine, I've been very well on Levo for 15+ years.

MrsGraves profile image
MrsGraves

Yep - I had AFib too with Graves and it is scary. I was advised that I would never achieve remission and my symptoms were dangerous / uncontrollable. I had RAI as soon as I could. Don’t regret it for one second - and I am doing very well on Levothyroxine .

lisbriamy profile image
lisbriamy in reply toMrsGraves

Did you have to wait until your numbers were in a better range? I was told have to wait till numbers are better and then they will take me off the medicine to do the RAI.

And how did you deal with all the symptoms?

MrsGraves profile image
MrsGraves in reply tolisbriamy

Yes I had to wait but I was only 6 months between diagnosis and RAI. My symptoms were such that I was taken straight to hospital upon diagnosis. Had major organ failure, A fib, fluid on my lungs, couldn’t walk couldnt eat / swallow, breathing was dodgy, weight falling off me.

My symptoms actually came on pretty quickly and stupidly I just soldiered on with my head in the sand. I too was very active and I didn’t do ‘being ill’. I put lots of the symptoms down to the menopause and thought it would pass! There was no way I ever wanted to feel that bad ever again so gladly had RAI and have been well since.

lisbriamy profile image
lisbriamy in reply toMrsGraves

So glad you're doing better.

lisbriamy profile image
lisbriamy in reply tolisbriamy

Were your thyroid levels normal when you had RAI? Do you go hyper again right after the RAI? Very stressed about what might happen. I just had another blood test yesterday and she told me if the numbers are better it might be time to have RAI. There was a possibility she would put me back on methimizole to make sure I would not go to hyper until RAI kicked in. Kind of freaking out about whole thing!

ling profile image
ling in reply toMrsGraves

Was that a thyroid storm?

Caesard profile image
Caesard

Hey there, I've been in your shoes. I remember that at that point I wasn't able to tell the full impact the disease was having on me, only to comprehend it better at a later stage, when I was getting better. Finally had to take on the surgery's offer due to TED complication of Graves.

The good news is that you are now in the middle of the process that will make you feel reasonably better. It's hard and possibly sometimes overwhelming but please be patient and understanding towards yourself. You will be better, have faith in that!

It's early now, youve just started your treatment, it will take time but you will slowly get better.

ling profile image
ling in reply toCaesard

"I remember that at that point I wasn't able to tell the full impact the disease was having on me, only to comprehend it better at a later stage, when I was getting better. Finally had to take on the surgery's offer due to TED complication of Graves."

So aptly put : )

Caesard profile image
Caesard in reply toling

I've tried, but my English is not native... I'm sure I would've done better if such was the case :)

ling profile image
ling in reply toCaesard

It's perfect : )

lisbriamy profile image
lisbriamy

Thank you, it can be frustrating.

Valarian profile image
Valarian

Your natural concern re the A fib won’t be helping your stress levels, and most of the hypers here will tell you that stress always makes their symptoms worse. If you have any techniques you use for dealing with stress, they would be worth a try - might yoga help, just doing it, not trying to teach ?

Do you know what your thyroid levels were when you ended up in hospital? It usually takes three weeks or so for antithyroids to kick in, as they inhibit production of new hormone, but cannot destroy whatever is already stored.

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