By way updates for those who've kindly helped in the last few weeks.....
Thyroid goitre confirmed on ultrasound- described as 'large' although I've no way of quantifying that description and it's pressing on my oesophagus causing some swallowing restriction.
TRab was positive for Graves at 10, although I don't have the range (NHS test in case that helps).
I've struggled to get to the right dose of carbimazole - initially T4 was 39 (9-19) which dropped to 30 on 10mg Carbimazole BD, and then climbed back up to 39. Carbimazole was increased to 20mg BD although I've only managed to tolerate 20mg morning and 10mg at night. T4 has now dropped from 39 to 26 in a week. I'm not being checked again for 8 weeks which feels really risky to me given that it's dropped by a third in just one week so I'm massively worried that I'll be over medicated in about 2 weeks time with 6 weeks still to go before they've agreed to check. Am I thinking this wrong??
My neutrophil count has also dropped from very bottom or range at 2.3 (2 - 7.5) initially to now 1.7. I know thyrotoxicosis can affect neutrophil count as can Carbimazole so obviously hoping that mine is thyroid driven and the Carbimazole will help it increase again but I'm obviously also worried about the risk of neutropenia. Any thoughts?
Happy to add more details if needed to make sense of advice. Thanks peeps 💜
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Someday_maybe
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Ok - so we now have a dose of the AT drug that is having some effect -
are you still taking the Propranolol as this beta blocker tends to slow the conversion of T4 into T3 - as it is too high a T3 that causes the symptoms being tolerated.
It is usual to have to wait 6-8 weeks after a dose adjustment for blood readings to have settled as blood test results tend to run a few weeks behind the symptoms being tolerated -
so yes, you may feel symptoms of hypothyroidism in this next phase :
There is an alternative AT drug Propylthiouracil - PTU - which I believe is prescribed when neutropenia is ' flagged ' :
Yes, still taking propanalol 40mg TDS - my heart rate jumps up to over 100 without it.
I'd forgotten about bloods running behind - thanks for the reminder. Do you think this means that the most recent bloods would have been ok without the increased dose (it was only 7 days in), meaning even more likely to crash to hypo shortly?
The threshold for neutropenia has been set at 1 so I've got to wait for the next bloods in 8 weeks unless I am ill before then I guess.
I'm sorry - but I don't know - guessing the TSH was still stuck and not moving ?
Give it a couple of weeks and see how you feel - it might be useful to track yourself on some physical symptoms such as blood pressure, pulse and temperature - am and pm -
If they show any marked differences talk with your doctor - also if you find this goitre creating more breathing or swallowing difficulties -
When self medicating and finding my dose of thyroid hormone I tracked these and whilst my blood pressure and pulse remained constant - I tracked my temperature slowly rise from 35.4 to 36.6 - which seems to be my ideal :
It might just help get an understanding of how your body is reacting while we wait this time out -
blood tests are all well and good for doctors as they are factual -symptoms need to be believed - but if we have this little chart of physical facts - it might show a pattern evolve :
Can I just ask - what do you mean when you type BD or TDS after doses - I'm at a loss !!
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