Just got back from my second Endo specialist appointment and the antibody tests show that I have Graves, he said I will see them every 8 weeks following a blood test, this will continue for a year.
I am only on 5mg of carbimazole and before Xmas I had been feeling well again but the last week or 2 the headaches/agitation/palpitations and temperature problems have returned, I told him this but he has kept me on the 5mg. My question is, can my thyroid levels go up again despite being medicated?
He said that a % of people go back to normal thyroid levels but the other % will remain with Graves for life, has anyone out there returned to normal thyroid levels?! I am hoping so, feeling a bit fed up as I was hoping it was just a short term thing!
Written by
Ros05
To view profiles and participate in discussions please or .
Ensure you view copy of positive TRAb or TSI antibodies results confirming Graves.
A year may be rushing it for Graves and many do well remaining on low dose antithyroid for longer (years).
Drs seem keen to stop treatments sooner, then if you relapse definitive treatments (surgery or Radioactive iodine) removes the need to specialist monitoring as hypothyroid treatment a view as a GP treatment management - easier & cost effective.
Do you have recent TSH, FT4 & FT3 results? headaches/agitation/palpitations and temperature problems have returned so levels might not be quite right & it’s sounds like hyper symtoms but many experience similar symtoms when hypothyroidism too. I get higher frequency on migraines when hyper, but a constant background headache when hypo.
So can I just confirm - looking back at your first post from October within 3 weeks and 2 blood tests your T3 and T4 naturally reduced back down almost both back in range - without you taking and drugs ?
This does not read as Graves Disease ?
Do you have some blood test results and antibody readings from this initial episode ?
Do you now have and can share with forum members your current TSH+ T3 + T4 blood tests and the antibody blood test reading that is the medical evidence needed to confirm Graves Disease -
probably written as a TSH Thyroid Receptor and a single number and cut off range, or a TSI/TRab ?
Graves is an Auto Immune disease and as such - there is no cure and it can be a chronic, long term health issue -
Graves generally only gets diagnosed when the immune system starts attacking the thyroid and / or eyes and some people do have just one episode of Graves and given long enough on the Anti Thyroid medication Carbimazole or Propylthiouracil ( PTU ) their thyroid resets itself without the need for any drugs and have, for want of a better word experience just a ' blip '
Currently the NHS allocate around a 15-18 month treatment window with an AT drug and all this does is buy you time while we wait for your immune system to calm back down again.
The AT drug semi-blocks your own, new daily thyroid hormone production and it is important that regular blood tests for your T3 and T4 levels are monitored as if your T3 and T4 fall too low in the ranges you will start to experience the equally, if not worse disabling symptoms of hypothyroidism.
When the thyroid comes attack from the immune system there can be various sets of antibodies found in your bloods -
there are 2 AI diseases that initially present in the same way Graves and Hashimoto's -
the main difference being Graves is continuous and builds higher and higher T3 and T4 levels if not medicated -
whereas with Hashimoto's the T3 and T4 fall back down into range themselves and these spikes in symptoms transient and it is not medicated until such time as the thyroid becomes totally damaged and disabled with the patient then needing to be prescribed thyroid hormone replacement.
and why it is essential that we know which antibodies were found positive and over range in your blood - as Graves is said to be life threatening if not medicated and the only one treated with the Anti Thyroid medication.
We do now have research suggesting that the longer the AT drug is used for Graves Disease the better the longer term outcome is for the patient :
When I was being treated for Graves in 2012/13 I was treated with block and replace.
First three months (before I had even met my endo) I was on carbimazole 40 mg alone then I met my endo who prescribed levothyroxine. That was increased every 6-8 weeks, not sure exactly how often but it was about that.
I found that every time I was needing my levo increased I got hyper type symptoms again. At first I thought like you that I was going hyper again but someone on here told me I was probably needing an increase in Levo and sure enough an increase in levo fixed the problem until it was time for another increase.
I have no idea what happens if your hospital are treating you by titration but the bottom line is, yes you can get hyper symptoms again when your meds need to be tweaked - you are probably not becoming hyper again. If that makes sense.
As Purplenails says - a year isn’t a long time for treating Graves - watch out for doctors trying to push you into taking radioactive iodine it was always being suggested to me should I relapse but I saw it as a way to get rid of me be sending me out to a GP who may or may not have been able to keep me feeling well. I just kept saying ‘No chance!’ If I relapse I want to go back onto antithyroid drugs even if it was very long term. Fortunately so far I haven’t relapsed.
I was diagnosed with Graves in May 2023, Was on 10mg of carbimozle for about 1 year, reduced to 5mg for another 6 months. As my thyroid levels were near normal when they reduced the dose..So, after a full 18 months of treatment, I was in remission. All back to normal.Yay!
I am still being monitored every 8 weeks, not sure how long that will remain in place.
They might not change your medication until after your next blood test.
All the best, hope it works out for you too.
you can go into remission with Graves’ disease but unfortunately it is a life long condition. I have lived with it for many years and have had a couple of relapses. Some people are on carbimazole for years and have regular blood tests to check their levels. Graves’ is stress driven so try to live a stress free life if at all possible. Easier said than done and because of my work I have found it difficult hence the relapses. Make sure you are not low in any vitamins because having low vitamins can make Graves’ a lot worse. I would have an ultrasound of your thyroid to check for nodules because a lot of Graves’ sufferers can have nodules which can cause high levels and you can have trouble with swallowing if you have a large goitre.
Try not to worry I have learned to live with this disease and apart from some manic episodes I am doing okay.
Wendy Williams has Graves’. Here is a video where she discusses it
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Blindness from Graves
Graves disease
Graves and sore upper arms
