I was diagnosed with Graves disease 8 weeks ago I was put on 50mgs off propylthiouracil (PTU) a say which is making me sick,,,, blood noses, stomach cramps, back pain, trouble breathing, flu.
My doctor said to keep taking PTU and was wondering if anyone has had problems like this and does it get any better!! Iv never felt this bad and and hoping to get some feedback, thanks
hi Susan, PTU seems to no longer be the med of choice in the event of Thyroid storms after an alert a few years ago concerning the severity of potential side effects.
I would consult with another endo, and if it were me, with the side effects you mention, I would discontinue the threatment. There are other options available, and risks can be very serious . Did your doctor mention that agranulocytosis is one of them?
Thanks Tatiana I'm still seeing a GP and she told me yesterday there was Nothing else available to take and keep taking PTU I'm not happy with that!!! I'd rater stop and wait too see endo
Thanks
Susan where do you live? Doctors usually prescribe PTU only if a woman is pregnant or if the patient cannot tolerate Methimazole or Carbimazole. Is either of those conditions true for you? That's not usually the first drug of choice other than for the above mentioned conditions.
Hi Linda, I'm in South Australia, no I have none off those conditions, PTU is the first medication she has tried!! Saw her yesterday and she said that's all I could have nothing else available,,, and Not to stop taking it,,,, I have.
IV never felt this bad and think it's time to find a new GP
I agree. A second opinion sure wouldn't hurt and might help. Please keep us posted.
Dear Susan
Could you ask your doctor to change your meds to Carbimazole which might be better tolerated by your body .. none of us has liked taking these meds ... but they do the job ...
PTU Is not the only appropriate med to take ..
I had no side effects of note with Carbimazole ... but was very vigilant
Whilst taking .
and after your treatment you could then start a very necessary regime of taking a number of supplements ....... supplements that Graves disease has robbed our bodies of ... and it is absolutely VITAL for our recovery to replace them ...
Have you been referred to an Endocrinologist ... if not maybe you could see one privately he is better equipped than your GP to treat Graves'
disease ( hopefully )
Many doctors have very little knowledge on the subject.. do not allow yourself to be talked into RAI or Surgery until you have
Tried your meds fully and start to supplement Then you can make up your mind on THAT subject
Myself and many others here have done just that ... and we are now Euthyroid
I.e..... Normal 🦋
And you could be too .. very soon Susan
So get a printed copy of your blood results making sure you have the antibodies tested too ......Your doctor is obliged to give you these printed results !!!
If you print the figures on here and the ones in brackets as they are the ranges for your Lab .. lots of good people will explain them to you and you can take it from there Luvvie
Remember to rest ... LIE DOWN to rest and try your best to be in a relaxed state
Drink lots of water ...
Don't try to do too much excercise or work
as your body is likely to be exhausted and confused with what's going in with your Graves' disease .
Best of Luck Susan ... come back to us and share your experience with your meds
Google the alternatives to PTU
And research Everything you can about Graves' disease ... it's not your poor Thyroid that's causing your illness ... it's your immune system that's gone wonky
And there are certainly ways to calm it down ...
So don't be alarmed with anxiety
Live Mx🌹
Thanks Linda I will 🤞🤞
I would definitely discontinue PTU until you see an endo. And would do so asap. were you diagnosed with Thryoid storm or "just " Graves' disease?
Tatiana I was diagnosed with Graves disease, I have stopped taking the PTU! Hopefully I should get my referral to to see a Endocrinologist today 🤞
Thanks Madge!! 🌹 I hope when I get to see an endoc
Oops dropped phone lost my msg
I'm getting a referral to see an Endocrinologist and pray he or she can get me on the Right Meds!! I will keep you informed. And will except Any info that will help me through this.
Hi Susan
While I understand you don't like the meds, I am concerned about your abruptly stopping them and not taking anything. My concern is that you could have a thyroid storm which can be life-threatening. Are you on a beta blocker like Propranolol at all? There are some natural things you can take so I will email you privately about that. It's always a good idea to do your research and trust yourself to make the right choices.
Susan, obviously if you are having a thyroid storm ( ultrasounds would tell in edition to bloods) you would need to be on ongoing treatment,tovaoid life threatening issues- PTU seems to b ether wrong option nd could trigger very serious problems . I would definitely see an endo VERY quickly. Or go to a local hospital ER .
Please keep us posted.best wishes.<3
Hi Tatiana, my doc has referred me to an endo,,,,,, JUST waiting for then to give me an appointment umm I wanted to Stop taking the PTU but doc says No!! I'm scared both know if I'm doing right thing,, spends most days crying like a Big sook instead of getting my act together!! Tremors, sweating, pain allover, seem to have the flu all the time!!! So hope the Endo can help 😢
Hi Susan
I know you've stopped PTU
.. maybe I would have tried halving it first
....Particularly If you had no effects that proved you had a serious reaction to it.
......Like sore throat, liver abnormalities and others listed .
in which case , you should of course , have sought help from your local A and E .
Anyway, maybe you've made the correct decision for you... and I wish you well with that.
I'd keep harping on about changing PTU for Carbimazole which suits many people and hopefully , you too.
When I was struggling with my Graves I took 3 things which for me , were incredibly healing and calmed my dreadful anxiety.
Bugleweed
Motherwort
And
Lemon Balm (Sweet Melissa )
I bought them from Amazon online in the form of Tinctures
I mixed them all in equal proportions
Into a larger brown glass bottle with a dropper
And whenever I felt anxious or nervous I took approx 2/3 teaspoonsful
It worked for me pretty quickly
And I've suggested it to many people who have also had success with it
Now ... it would be most sensible if you firstly check each of those online
I.e. ...
google Bugleweed/ Motherwort
And so on ....
Just to assure yourself that they are suitable to you ... they may be the very things that keep you going in difficult situations
Or even along with your meds if yOur GP thinks it's suitable.
Good luck
Mx🌹
sorry ..l meant to say
ie Google Bugleweed / Graves disease
Motherwort / Graves dusease
Lemon Balm / Graves' disease
mx🌹
Hi Susan, I'm in NSW. I was put on carbimazole (brand name Neo Mercazole) in March but there was a problem with supply and I believe they sourced some from o/s so there may be a problem, with supply, just a thought. Your GP doesn't sound very forthcoming so you may be best to find one who explains things to you.
Also Susan, the symptoms you describe match my pre treatment symptoms so is there a chance your symptoms could be the hyperthyroid symptoms and not the meds? Or do you feel better after stopping the PTU? again just a thought. Good luck and hope you get sorted soon.
Hi Jennifer, I went to pharmacies here and ask if carbimazole was available and was told is hard to source but 1 had it in stock, my symptoms are the same now as when I was diagnosed with Graves except the blood noses, rash and severe back pain, so I feel it time for a change in Meds!! Im to see and Endo in three weeks so hope he can do more to help