Random symptoms

[NewbieHyper]

Hi all,I was diagnosed with graves in November last year.

I'm now stable on 5mg carbimazole daily since December. I'm due back to my dr in mid April. My symptoms at diagnosis were feet swelling and heart racing.

Now I get random bouts of heart racing, crushing fatigue if I'm not careful to take breaks in the daytime or get enough sleep at night.

I thought being stable meant no more issues but it appears I have to keep stress free, rest often/ go to bed early and don't overwork. I've had to leave events early from just feeling exhausted when in the past I'd feel fine.

Is this how it's always going to be?

How do I cope?

[PurpleNails]

Are your levels right?

Doctors tend to leave people on 5mg as viewed as lowest dose, but some take every other day or halve pill.

What are you results?

[NewbieHyper in reply to PurpleNails]

Ui,Thanks for responding. My dose was lowered from 20mg to 5mg in November as I was trending hypo. Results in mid January were:

T4 11.97; range 9.01 to 19.05

T3 2.96, range 1.88 to 3.18

Tsh .72, range 0.35 to 4.94

I'm due to test again mid April.

[pennyannie]

Hello again :

All the AT drug does is ' buy you time ' while we wait for your immune system response to calm down and this drug should alleviate the worst if not all of the roller coaster ride of symptoms you may experience.

As your T3 and T4 fall back down into the ranges the AT drug is titrated down as otherwise you risk your T3 and T4 falling too far through the ranges and will then experience the equally disabling symptoms of hypothyroidism.

When metabolism is running too fast as when ' hyper ' or too slow as when ' hypo ' the body struggles to extract key nutrients through food no matter how well and clean you eat - and low nutrients can compound your health issues even further so suggest you ask for your ferritin, folate, B12 and vitamin D to be run - and we can advise where these need to be as some NHS ranges are too wide to even be sensible.

Quite why your immune system has turned and started attacking your body rather than defending it is the 64 million $ question and Graves is poorly understood as no two peoples journey is the same - however there could be genetic predisposition with someone in your family, possibly a generation away from you with a thyroid health issue and stress and anxiety do seem to be common triggers when dealing with Graves.

The NHS generally allocate a treatment window of around 15 - 18 months with the AT drug taking the view that if your T3 and T4 do not then stay in the ranges without the need for the AT drug definitive treatment either surgical removal or RAI thyroid ablation encouraged.

Quite what the treatment regime is where you are in the World is the next question ?

However the most recent research we have shows the longer the patient stays on the AT drug the better the longer term outlook for the patient :

pubmed.ncbi.nlm.nih.gov/338...

ncbi.nlm.nih.gov/pubmed/306...

Might make sense, in future, to post on the Thyroid UK forum as ultimately we all end up over there, one way or another.

For all things Graves Disease - elaine-moore.com