Hi all, I’m on 300mg of PTU. The aftertaste is disgusting. How long did it take for your symptoms to improve? I’m terrified of liver damage or something happening to white blood cells.
I also take 150mg in the morning then 8 later another 150mg. Doesn’t say on box how long I should space apart. Is 8 hours ok?
Ive not had PTU but when I’ve split my antithyroid dose I’ve done it 12 hourly apart eg 08:00 & 20:00 so the gap is really even.
Dose can be taken just before food so something just after might help take after taste away.
Most find symtoms start to improve by 6 weeks the dose often needs adjust by this stage. Has a repeat test been scheduled? Symtoms can gradually improve once levels are at your optimal, it won’t be an overnight thing.
It’s natural to worry about the side affects but they are rare & being prepared by reading to patient leaflet so you know to watch out for is the best thing to do.
Thank you for your reply. I’ll do it ever 12 hours, thanks for the advice.
Im going back in 6 weeks and they told me to come in a few days before to get bloods before I see endo. I hope I start to feel better soon. I’ve read all what to look out for and being hyper vigilant.
I’m taking a multi vit too. I read should be after 4 hours after dose of PTU. Is that right? It’s not got Idoine in it but does have biotin? Is that ok? Forgot to ask dr
Multis tend to have low poor version of supplements. Always better to test vitamin level & supplement to right level.
Biotin can interfere with tests so stop a few days before blood draw.
thanks for advice
Test vitamin D, folate, ferritin and B12 at least annually
Multivitamins never recommended on here ……too little to improve genuine vitamin deficiencies and cheap poorly absorbed ingredients…..at best a waste of money
Hello Kirsty :
Graves is an Auto Immune disease and as such there is no cure - and generally only gets diagnosed when one's immune starts attacking the thyroid and or eyes.
When the thyroid is under attack from the immune system there can be some overlap in antibodies found in the blood -
but with a positive for Graves and having an o/range TSH Receptor reading - Graves treatment takes precedence as Graves is considered life threatening if not medicated.
The medication is an Anti Thyroid drug and all this does is ' buy you time ' by semi-blocking your T3 and T4 thyroid hormones rising higher and higher - while we wait for your immune system to calm back down again and hopefully your thyroid reset itself without the need for any drugs.
We do now have some research you may like to read :-
pubmed.ncbi.nlm.nih.gov/338...
ncbi.nlm.nih.gov/pubmed/306...
When metabolism start running too fast as in hyper or too slow as in hypothyroid - the body struggles to extract key nutrients from food - no matter how well and clean you eat -
so it is wise to get your ferritin, folate, B12 and vitamin D run as if any of these are low, though likely in the NHS range your health can be compromised further than necessary.
Ideally once on the AT drug there should be regular 6-8 week follow up blood tests and as your T3 an T4 fall back down into their ranges the AT drug will be titrated down accordingly.
The aim of the treatment is to try and maintain your T3 and T4 in the ranges on the least amount of AT drug, and with the least amount of symptoms being tolerated -
Aim for around mid point in the ranges for both thyroid hormones - as too low a level of either hormone - though in the range - will likely cause you to start experiencing symptoms of hypothyroidism which is equally, if not more disabling.
I found the most well rounded of all I researched that of Elaine Moore's books and now website - elaine-moore.com
Thyroid UK - the charity who supports this patient to patient forum hold much more information about all things thyroid - including a very comprehensive list of both hyper and hypo symptoms - which you might like to tick box - as you go through this first and hopefully only, phase of Graves Disease. thyroiduk.org
There is likely a genetic pre-disposition to Graves with maybe a family member - a generation away from you with a thyroid health issue and Graves can be triggered by a sudden shock to the system like a car accident or the unexpected death of a loved one - or seem to just occur totally out of the blue :
Graves is a poorly understood AI disease and everyone's journey with Graves is unique to them though we do know that stress and anxiety are common triggers.
Thanks for the info and will check out links. My vit levels have all been checked and prob the best they have ever been due to me taking a multi vit for over a year. My iron level is perfect and around a year ago before multi vit was under so that’s why I want to continue with multi vit but of course don’t want it effecting my PTU meds as I’m desperate to feel better. I can’t even clean my house without sweating like a pig and feeling light headed x
Just for reference optimal ferritin needs to be around 100 - folate around 20 - active B12 around 125 ( serum B12 around 500++ ) and vitamin D up at around 125.
I couldn't see a vitamin D and your ferritin and B12 need a little help in my opinion.
Oh really. Thanks so much for letting me know. The Gp said I was all good so really good to know
sorry Pennie one more question. Is folate my folic acid? That's over 20, right? has my active b12 been tested? and I take it my serum b12 is 422? I want to go back to GP and ask for vit d and b12 active? is that right?
The folate is written as folic acid and yes over 20 -
Active B12 is a better test as it shows what is biologically ' active ' -
whereas serum B12 also known as total B12 shows all forms of B12 in the blood.
You have stopped the iodine supplement haven't you - ?
and you need to be off all supplements you are testing for around a week before the blood test -
so we measure what your body is holding rather than that just ingested.
Biotin can influence blood test results as it ' messes ' with the assays used in some laboratories.
Your levels are not dire - do not start worrying over these results though a vitamin D reading would be good to know.
Thank you, appreciate your advice. Yes no longer on iodine. I have attached more results as few out of range and have no idea what it’s about. Again GP didn’t seem bothered. I know the top one is my liver and they said it’s up because strain of my liver from graves. The phosphate and Haematocrit are out of range.
I don't know enough to comment on these further tests - sorry :
How long to feel effects of NDT?
Overmedicated - best way to manage symptoms
Naturopath or private Dr - desperate, please help!
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Sore throat on PTU/Carbimazole: agranulocytosis 
