I have just had my second bloods back 4 days ago before the weekend, I am still waiting to hear from the hospital and my doctor hasn't rang me about the results even though I can see them on my NHS app. I have been on 40mg Carbimazole for the past month. Now seems my T4 is below and I feel uncomfortable taking such a high dose as I don't want to go into hypo as have actually been feeling really good. Do you think ok to half my dose while I am waiting to hear from the doctor?
Is it normal to have such low numbers after a short period of time?
thank you. in advance from a night worrier
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thank you so much! I’ve already asked twice for them to test vitamins but they’ve said no.. but got a number of a good private doctor now, as would be interesting to see what the antibodies are up too. Thanks again!
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In days before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12 if last test result serum B12 was below 500 or active B12 (private test) under 70
You can test Graves abs yourself if this is why you are thinking of seeing a private doctor - as I doubt a private doctor will stray very far off the treatment regime already in place -
and in fact all your blood tests if your doctor is unable to process same for you :
Please contact your doctor and ask that in light of your new blood tests can you please reduce your Carbimazole - or alternatively see if the hospital endo can advise by return - your doctor is likely working to hospital instructions anyway - though the system is slow and backed up.
Please ask again for the core strength vitamins and minerals - ferritin, folate, B12 and vitamin D to be run as when metabolism runs too fast as in hyperthyroid or too slow as in hypothyroid the body struggles to extract core nutrients from your food and low levels of the above co-factors can compound your ill health further than necessary.
Once with an AI disease the abs are rarely tested again as there is no cure for an AI diseases that may wax and wane throughout one's life and it's more about learning and managing ones own ' self '.
As you can see the Anti Thyroid drug has done it's job and your T3 and T4 are now lowered and glad to read that you feel more comfortable - and hopefully as the weather improves you will be able to return to your much loved gardening job - but no surfing yet.!!
So, yes, your dose of the AT drug now needs reducing down as we need to try and keep your thyroid hormones - T3 and T4 - in the ranges at around mid point -
where hopefully you will have minimal symptoms while we wait for your immune system to calm down again and hopefully your thyroid reset itself without the need for any drugs.
Your TSH still looks ' hi-jacked ' and stuck down by Graves antibodies at 0.01 -
so imagine Graves abs are still circulating in your blood stream and pushing down on the TSH Receptor sites causing excess thyroid hormone production and so we still need to be semi-blocking and dampening down your immune system with the Carbimazole.
Hello Pennyannie, thank you so much for your reassuring comment! It's been such a roller coaster just trying to get my head round all the info! thank you for laying it out so clearly for me x
Your TSH hasn't moved and is still stuck down at 0.01 so that usually means your immune system is still active.
We know your T3 and T4 are now too low - and maybe your initial start dose of the AT drug was too high but I would be cautious of stopping completely the AT drug as your immune system is still active and the AT drug also dampens down the immune system.
I think it would be prudent while waiting for an endocrinologist to get back to you that you take a small daily dose of the Carbimazole as ' insurance ' -
I do not know what size your tablets , you may need to chop them up a bit, but I was thinking of around a dose of 5 mcg daily ?
yeah my antibodies were pretty high so I imagine they're still having a party on my thyroid, I've also read that TSH is the most delayed to come up and I have only been on medication for a month. The consultant confirmed to stay off carby Z for a week and then try 10mg a day and retest in 4 weeks instead of 6. Curious to see how it'll go...
Thanks again for your advice, it's really good to have somewhere to vent
Is it normal to have such low numbers after a short period of time ?
Yes and my experience might be relevant for you. I started on 20mg. C. After a month I became very hypo. Over the next few months Carbimazole was reduced 15/10/5mg. but I remained stubbornly hypo. It was stopped for a month and restarted at 5mg. Finally, a year after being diagnosed I began Block and Replace -10 mg Carb. and 100mcg Levo. Slow and steady is usually best but with hindsight because I became so hypo so quickly, I think time could have been saved reducing to 5mg rather than titrating down. My results were normalising on 5mg and given a bit longer I might not have needed B&R. It would be interesting to measure TRAb which might still be high but with blocking rather than stimulating AB’s now dominating. Some papers on “ Hypo Graves”
Hi Asiatic, thank you so much for your reply, finally spoke to someone at the hospital this afternoon and expressed what was in your post, as this is one of my concerns. Seems if I am already down below average not to keep pummelling the thyroid with the dose I was on. They listened! Stopping my dose for a week and then restarting on a lower dose, they said probably a 5mg, but double checking through the consultant. Thank you so much for your comment.
That all sounds positive. Hope your levels stabilise. If you are still a bit on the hypo side you can try halving the 5mg tablet down to 2.5mg. which is still an effective dose. Good luck.
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