Medication I'm taking

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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

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19 Replies

  • Posted

    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?  

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    • Posted

      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

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    • Posted

      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.

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    • Posted

      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

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    • Posted

      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? 

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    • Posted

      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 🤞

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    • Posted

      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

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    • Posted

      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 😢

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    • Posted

      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.

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    • Posted

      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.
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    • Posted

      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
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  • 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🌹

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    • Posted

      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.

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    • Posted

      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.

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    • Posted

      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🌹

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    • Posted

      sorry ..l meant to say 

      ie Google   Bugleweed / Graves disease

                         Motherwort / Graves dusease

                         Lemon Balm / Graves' disease

      mx🌹

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