I thought I would post an update to share my experience so far with Graves and pose a couple of questions.
I had positive Graves antibodies result in September 2023 / low TSH but T3 T4 in range. Radioiodine scan showed increased uptake / hyperthyroidism.
Started Carbimazole 5mg per day for 2 months. After the two months TSH was still undetectable but fT4 in the lower range and slightly lower than previous test. Endocrinologist prescribed Carbimazole for another 2 months (1 month at 5mg and following month drop to 2.5 mg).
I’m afraid at this point I took things into my own hands a little and tweaked my dose to half that (half a 5mg pill for one month and a quarter every other day for the next.)
Just had my follow up TSH /fT4 and endo visit at the 4 month mark from starting carbi and my TSH came up to just under range (up from 0.003 to 0.37 with ‘normal’ range of 0.4 – 4.5 and fT4 1.04 (range: 0.8 – 1.9). Endo suggested we discontinue carbi and check hormones in 3 months.
What concerned me was his statement that if remission had not been achieved and in 3 months levels are creeping out of range again that the only solution would then be thyroidectomy or RAI ablation.
I feel horrified at the finality of that conclusion and I asked if I could continue on a very low dose of carbi for the next 3 months to give a little more time for remission (having read here, thanks to all of you, that perhaps the longer the carbi therapy the higher the likelihood of remission).
I am basically stalling for time as I can’t accept either of the treatment options offered if I have not sprung into remission. So far I have been subclinical all along so I am fearful of rash and irreversible prognoses.
Forgive the long post but I would be interested to have any feedback from others regarding whether I might be right to continue the carbimazole for a while and what I should do in the event remission isn’t immediately achieved. The endocrinologist thinks that continuing on carbi at the moment will send me hypo (even though I have been taking a ridiculously low dose) and that if I haven't already achieved remission I am not likely to.
Any thoughts or similar experiences appreciated!
Written by
ElleBee99
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After 8yrs.treatment for Graves and currently weaning off meds to check for remission I wanted to share a few personal thoughts. I think your Endo is likely correct that coming off Carb. will send you hypo ( as your T4 is already low ) but wrong to suggest your only solution is Thyroidectomy or RAI. Your rising TSH may indicate AB’s are reducing ( they have an inverse relationship ) You are correct that the longer you are on Carb. the better the chance of a lasting remission.
In your situation I would continue on a low dose of Carb. checking for symptoms and bloods for signs of hypo. If this happens consider adding in a little Levothyroxine. Normally a Block and Replace regime involves higher doses of Carb. but for people like us who respond well I don’t think it is necessary and has certainly worked for me. Why take 20 mg. if 5 will do and there is certainly no need to rush things. Slow and steady is the best approach.
When you say 'coming off carb will send me hypo' do you actually mean staying on it will send me hypo?
I totally agree that slow and steady is the approach I want to go for but hyper/hypo symptoms can be so interchangeable so I don't really know what I should be on the lookout for if carbi is slowly sending me hypo. I have only been taking a quarter of a 5mg pill every other day for the last month so I am hoping that my slightly improved TSH means that things are slowly calming down!
Some transition from Hyper Graves to Hypo Graves depending on which AB'S are dominating stimulating , neutral or blocking. It can be permanent or transient and may explain your low T4. I have tended towards Hypo for many years now. I find my resting pulse a good indicator. Normally about 60 bpm it goes down into the 50's when Hypo and rises above 70 if hyper although I haven't been hyper for years now. To keep feeling well you have to adapt to whatever situation presents itself.
Thank you so much for sharing. All of you here have been a lifesaver in trying to understand a condition that is not even medically understood and treated via a set protocol that seems to me very rigid and narrow.
the fact that your TSH is moving is a positive step so what about asking for your Graves antibodies to be rerun before making any decisions ?
I am sure if this were this endo - as the patient- with the knowledge one hopes s/he has acquired in this specialised field - s/he would put themselves back on the AT medication, after all. we are looking at an Auto Immune disease for which there is no cure and for which mainstream medical have no answers. but definitely not the ' quick fix ' they wish we were.
The time line to successfully ' finding remission ' is different for all of us - but I'm afraid it's the hospital treatment guidelines that encourage a faster than preferred discharge out as Out Patient Waiting list waiting times are crucial measures of a hospital maintaining their productivity position in the league table of effective time/management.
Did you copy any of the research papers for your endo and was there any answers?
It was 'funny' actually... as I left the endo's office, he shook my hand and said 'thank you, doctor' as I had basically convinced him to give myself my own treatment plan which I don't think he could fault, for the moment.
How this specialised profession can be so ready to fire at the victim (being the thyroid) is beyond me, but anyway...
Which research papers did you mean?
There is no exophthalmus in my eyes but they are dry and gritty a lot of the time and eyelids feel uncomfortable.
I sent you a couple of research papers which you will find on your first post on this forum along with suggesting that you must use Preservative Free eye drops and ointments to relieve eye symptoms.
Just press the icon on this page saying Profile - on my laptop it's top right- and this takes you to all your have ever written on this forum and all your replies.
Yes, I did quote the research but basically made the decision myself to stay on the AT drug at very low dose and the endo did not argue against it for the moment, although my fT4 is already on the low side so I am a bit concerned about that with continuing the drug.
For the eyes I have tried a range of drops but they don't seem to help - perhaps they weren't really preservative free and I also tried Vits-Pos gel with Vit. A at night which is supposed to be very soothing but my eyes went bright red!
Well it should state on the packaging and on the actual product if Preservative Free and if not this will make your eyes worse as if ' with preservatives ' these build up ' at the eye lash base and block the tear drop glands and cause more issues.
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