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 put these further tests into context - sorry :
Multi vitamins are not recommended - it is suggested that we use ' A ' grade supplements with as few bulking agents as possible - and dose each vitamin and mineral so we have greater control :
There is an alternative AT drug - Carbimazole - but presume you were prescribed PTU as you are wanting to get pregnant - which I think, is probably best left now, until this first phase of Graves Disease is over.
Yes i was thinking should I switch to carbimazole for first phase. Im going to see how I get on.
Hi Kirsty,
I’ve not experienced aftertaste at all …I’m only on 50mg. Is there a reason you weren’t started on carb first? I thought that was first port of call. I was but I came out in a terrible rash all over, that’s why I’m now on PTU.
What were your symptoms? Mine was sweating and breathlessness that caused me to ring gp. I still feel utterly shit but my thyroid is in range now and has been for a while. So think it’s either side effects of anti depressants or menopause but I doubt it’s the latter as I’m almost ten years without a period. Good luck, hope you feel better soon
Hi Kiki, I want to try for a baby, I'm 38 and don't have time on my side so on PTU and Carb is not recommended in first trimester. So I called the GP as I was sweating and my hair falling out. I thought I was heading for menopause but bloods came back with Hyper. I also have a raised heartrate so on betablockers and just have 0 energy. It also has made my periods very light. My symptoms came on suddenly and I noticed quite quickly. I think mine was set off by a virus. I'm so sorry to hear you still having symptoms. How long did it take for you to get down to 50mg of ptu? this is the goal for me and then I am able to start trying for a baby. Consultant said it could take 6 weeks for my levels to become normal.
Oh right I see, ah best of luck with conceiving. I unknowingly went thru premature meno in my 30s thankfully I accidentally got pregnant at 30 - if I’d waited as I’d planned to it would’ve been too late for me as my periods finished at 39. Graves is a nightmare for me as symptoms overlap with other things for me. I take beta blockers too but just for anxiety.
I started PTU on 100mg but I was tingling from the knees down all the time so we agreed to try 50mg. But it turns out it wasn’t PTU causing the tingling, think it’s an anti depressant side effect, of ssri’s. As I’m still getting it now. But the 50mg still brought thyroid within range so sticking to that. It was pretty quick to be honest within a few months - hope yours is too I’m sure it will x
I took PTU and initially felt very well on it. However about 3 months in I developed vasculitis which was horrible. My steroids were doubled, I have other auto-immune conditions, and I was given various creams to help the rashes.
My face was swollen and red and my legs were shiny and itchy, the broken skin on one shin was about to develope into an ulcer.
My liver function tests also showed ALT was well out of range.
I was disappointed to stop the PTU, as the alternative is Carbimazole which I had taken before and had given me severe constipation. I am now back on a low dose of 15mg, Carb, 5mgs, a time over the week and I take Lactulose regularly. However, the constant stomach ache is so bad, I have reduced it myself to 5mgs twice a week.
My latest readings are promising even on the lower dose, although much is made of the TSH which has always been well under one, even when I was hypothyroid. Only T4 is slightly raised, T3 is fine.
My liver is back in range too.
I am seeing the endo next week, it seems I may be swinging back from hyper to hypo as my weight is going up again and I feel exhausted.
I was hypo for many years before becoming hyper and have antibodies for both conditions.
All drugs have side effects, so much depends on which ones your body accepts without harm, and what you can put up with.
Good luck !
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Sore throat on PTU/Carbimazole: agranulocytosis 
